tag:blogger.com,1999:blog-18921340810497743862024-03-10T23:23:12.109-04:00Autism JabberwockyMaking sense of the nonsense in the world of autismM.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.comBlogger392125tag:blogger.com,1999:blog-1892134081049774386.post-90527725271092487452015-01-18T18:58:00.000-05:002015-01-19T08:24:05.866-05:00The End of the BeginningLast month marked an autism anniversary of sorts in that my twin daughters turned ten years old. When they were born ten years ago I knew almost nothing about autism and the idea that my children could have it never even entered my mind. Now, ten years later, I know more about autism that I ever wanted to know and it is front and center in my family's life. Because all three of my daughters have autism it impacts every single facet of our lives from personal to professional to beyond.<br />
<br />
I wouldn't give my children up for the world but if a cure for autism were discovered tomorrow I would gladly use it to cure my children of what is, for them, an extremely debilitating condition. I know that isn't a popular sentiment in a community where people like Jerry Seinfeld are applauded for reading a book on autism and deciding to diagnose themselves with the condition. But then again my children actually have the developmental disorder called autism and not some other random collection of perfectly normal and functional traits that the rest of the "autism community" have decided are a part of what they call "autism".<br />
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I entitled this post the end of the beginning because, with the twins turning ten, it sort of is the end of the first chapter of our lives with autism. We spend the first ten years pushing them and their younger sister as hard as we could and trying every reasonable thing we could find to alter the course of their autism. I firmly believe that what we did helped. <br />
<br />
The twins went being completely cut off from the world to being at least partially connected. They went from being completely unresponsive to speech and social interactions to having at least a rudimentary grasp of language and social situations. They went from having tantrums several times a day and being unable to regulate themselves to having barely a tantrum a week and a much better ability to control themselves.<br />
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The youngest has also improved greatly but she is another story entirely. She has always been more functional than her sisters but she is almost more limited by anxiety and hyperactivity.<br />
<br />
But at the end of ten years I don't known whether we have managed to do enough. I don't have any regrets about what we did or didn't do but it isn't clear whether we have been able to push them hard enough to achieve escape velocity from the deficits of autism. All three are still extremely young but, as the gap between them and their peers grows larger each year, it is hard to ignore the fact that the odds are not in their favor.<br />
<br />
So our focus has been slowly shifting to their future. Suffice it to say that the future for children with autism isn't the best. Our approach has always been to hope for the best but plan for the worst. The best outcome is that they will be at least able to support and take care of themselves and the worst, well. Lets just say that we will do everything we can for them as long as we can but we worry what will happen after we are no longer able to care for them.<br />
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Enough of the cheery stuff. I can't predict the future any better than anyone else and there is no way of knowing how far they will progress in the next ten years. After all, I hear that puberty is a blast in children with autism.<br />
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However, I do think that I am done writing here. As you probably noticed my output has dropped over the past year to barely a trickle so I think it is time to call it a day. But before I do I wanted to summarize (quickly, I promise) what I have been trying to say all these years -<br />
<br />
1. Your children are your children, your children are not "autism". "Autism" is just a word used to describe a set of behaviors, it is not something they can be. So love your children but feel free to hate "autism".<br />
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2. Not everything your children do is because of autism. Autism may be pervasive developmental disorder that has an incredibly broad impact but it doesn't cause every problem behavior does not it grant every area of talent. So if your child is good at something that is probably because they are good at it. If they have issues it could be something other than autism causing them.<br />
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3. Autism is not "genetic", at least not in the way that most people mean when they say "genetic". Genetic alterations do play a role in autism but autism is not solely (or even largely) controlled by our genes. So ignore all of the breathless announcements about new discoveries about "autism genes" because it is not going to be that simple. Autism (or more likely autisms) is going to look a lot like cancer when it comes to genes - there will be genes that increase risk but none that directly cause the condition.<br />
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3. Autism is an ongoing disruption of biological homeostasis. Your body is an exceptional machine that works extremely hard to keep things in balance. Autism, whatever it is, comes in and takes a sledgehammer to that carefully maintained balance and then keeps it out of balance. <br />
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4. Recovering from autism is a two step process. First you have to try and find and correct the underlying biological issues that are preventing progress and causing problematic behaviors and then you have to teach the skills that were not learned normally.<br />
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5. The number of people with autism is growing at an extremely alarming rate. You can argue about what factors are artificially inflating the numbers but at the end of the day you are still left with a substantial real increase. The rate of this growth shows no signs of slowing down. If you are not concerned about this then you are either not paying attention or are in denial. Autism is not the only developmental disorder growing like this.<br />
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6. The online autism "community" is largely filled with asshats pushing their own ideology. You can and should ignore most of them. Don't focus on an ideology but instead find the bits and pieces that work for your family.<br />
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7. Organizations such as ASAN are top 1 percent of the autism world. Yes, most of them have something that you might be able to call autism but it bares little resemblance to what the other 99 percent of people with autism look like. Their slogan might be "its all about us" but they really have no clue about what life is like for the other 99 percent of people with autism.<br />
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8. Parents, you need to achieve peace with your children having autism. You need to take time for yourselves and to find a way to relax and enjoy yourselves. If all you do is live and breathe autism 24 hours a day then you will burn out.<br />
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Take care and good luck.<br />
<br />
Matthew Joseph<br />
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P.S. Why was it so very hard for everybody to understand that M.J. was initials and not a women's name? I mean, really, if I had dollar for every time someone called me she...M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com9tag:blogger.com,1999:blog-1892134081049774386.post-51835895869587714042014-10-26T15:13:00.000-04:002014-10-26T15:13:03.651-04:00Neurodiversity : Biological Fact or Fiction?<div class="tr_bq">
I don't think it will come as a shock to anyone who has been reading this blog over the years that I don't care for the idea of neurodiversity. The core idea of neurodiversity - that everyone is different and should be accepted for who they are - is a pretty simple and obvious idea and one that I completely agree with. But the neurodiversity movement doesn't stop with just that simple idea and piles so much other crap on top of it that core principle is distorted beyond recognition.</div>
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You start with the idea that a person should be accepted as a person even if they are different and you end with with random people wandering the internet screaming at autism parents such as myself that they hate their children. For example, here is a recent example of a comment that one of these lovely people left here not too long ago -<br />
<blockquote>
I never get tired of allistic parents thinking they know more about autism from having young autistic children than actual autistic adults who have been autistic for decades. Really great. Love it. (All sarcasm, sorry.)</blockquote>
<blockquote>
It's not worth trying to convince martyr parents like this one, Anon. He's utterly convinced he's an authority while he continues to use functioning labels and make ableist jabs at an autistic person who disagrees with him. (Also seems to support Autism $peaks? Gross.) I'm so freaking tired of trying to Google helpful info about autism and getting only results from whiny parents trying to 'correct' their kids or whatever.</blockquote>
<blockquote>
Really, if this is how he reacts to actual autistic people who DO possess the ability to respond to him and voice our opinions, I can only imagine how nasty he must be to his kids, whether he realises it or not. </blockquote>
<blockquote>
Anon, if you wanna talk more about autistic stuff with actual autistic people who won't try to talk over each other, send me an ask (you'll need a tumblr account, sorry) at (REDACTED) and I'll give you my real URL once I know it's you and not OP or his gross curebie fanclub. </blockquote>
<blockquote>
Otherwise, yeah, don't waste your energy on this guy. I'm about to use my Google Blocklist to make sure this trash blog doesn't show up in the results for me anymore. </blockquote>
<blockquote>
Really sorry for OP's kids. We've all been there, but sure, of course he knows what's best even though we're expressly telling him he's wrong from experience, right? (more sarcasm, sorry)</blockquote>
In the interests of full disclosure, I did delete this person's (repeated) comments and simply told him (repeatedly) to go away. This isn't a woe is me or pity party post and in the not too distant past I might have engaged this person and tried to change his mind. But you can only have the same discussion so many times before it really just gets old.<br />
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The point is that attitudes like this are one of the comment end results of neurodiversity. You start with the idea that everyone should be accepted for who they are and end with people who think differently are not accepted. It never ceases to amaze me that none of the neurodiversity advocates recognize the inherent hypocrisy of their position.<br />
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So with that in mind it is interesting to look at where neurodiversity starts. One person was nice enough to perform, as they put it, a "public service" and give their opinion about what all of the terms surrounding neurodiversity mean. I would like to draw your attention to the basic definition of neurodiversity that was <a href="http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/" rel="nofollow">provided</a> since it is a common one -<br />
<blockquote class="tr_bq">
What It Means: </blockquote>
<blockquote class="tr_bq">
Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.</blockquote>
<blockquote class="tr_bq">
What It Doesn’t Mean: </blockquote>
<blockquote class="tr_bq">
Neurodiversity is a biological fact. It’s not a perspective, an approach, a belief, a political position, or a paradigm. That’s the neurodiversity paradigm (see below), not neurodiversity itself. </blockquote>
<blockquote class="tr_bq">
Neurodiversity is not a political or social activist movement. That’s the Neurodiversity Movement (see below), not neurodiversity itself.<br />...</blockquote>
I think the seeds of where the neurodiversity movement goes wrong are in this basic definition so lets break it down. Is an "infinite variation in neurocognitive functioning within our species" a "biological fact"?<br />
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The answer is no for a number of reasons.<br />
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The first reason is a rather pedantic but also important one. The word "infinite" has a very specific meaning -" limitless or endless in space, extent, or size; impossible to measure or calculate". The human brain is clearly not limitless or impossible to measure. In a more general sense you can't take something that is finite and get to infinite simply because there are lot of possible permutations. The number of theoretical combinations might be an very large number but it is still finite.<br />
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Maybe a better way of saying this is that you can't represent infinity in about 1.5 kg of tissue.<br />
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Its very romantic to think of the human brain as having infinite possible configurations but the word simply doesn't fit. There are going to be a finite number of configurations that your brain can be in, which leads to the next point.<br />
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Of all of the theoretical combinations that your brain can be in, how many do you think are valid state in which your brain would function? Just because the underlying biology can be put together in a certain way doesn't mean that brain would actually function in that configuration. By function I mean not only things that are outward behaviors but also little unimportant things like keeping our body running.<br />
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I don't have an exact answer to how many configurations are valid but basic biology tells us that our cells need very specific and narrow conditions to live. The body has many redundant systems whose purpose appear to be to keep the itself operating within parameters. I would presume the same holds true for how the brain wires itself. Just because a brain could be wired a certain way doesn't mean that way will produce a result that would actually do anything or be able to sustain the basic biological functions of a person.<br />
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I would estimate of all of the possible permutations of the human brain only an extremely small number of the permutations would be able to run the human body and produce a result that resembles anything even close to what we understand as a person.<br />
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So no, the "biological fact" isn't that "infinite variations" are possible. The "fact" is that while the number of possible variations may seem to be impossibly large to us, it is in "fact" quite a small range that will actually work.<br />
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A good analogy here might be how we think of color. The human eye can perceive what some might consider an almost infinite variation in colors. But in "fact" we can only see an extremely narrow range of the possible spectrum. The human eye is very limited in its range and yet to our narrow perspective the range seems impossibly large.<br />
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Once you leave the romantic idea, or "biological fact" if you prefer, of infinite possibilities behind you can start considering what the possible set of variations are going to be. Without getting too far afield, let's just assume that out of the possible set of configurations there are going to some that are more common than others. There is a substantial body of evidence that suggests that this is the case and there are many reasons why it could be true.<br />
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This common set is what most people think of as "typical" or "normal". Those words have a lot of extra meaning packed into them but the basic idea is that most people, for whatever reason, are going to be inside this range. <br />
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So what about the people who don't fit inside this "normal" range, the people that the neurodiversity movement is so concerned about? Going back to the basic idea you shouldn't assume that a person is somehow less of a person because they don't fit into some typical range. But this statement isn't an extrapolation of "biological fact" but rather an ethical one.<br />
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Neurodiversity is an ethical construct that is based on extremely human ideas and that is why it starts going so wrong at the very start. Neurodiversity conflates the ethical idea of a person having value because we have chosen to value people with the idea that all of the possible biological permutations have the same desirability or value.<br />
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Inside the limited set of permutations that can occur in your brain that will produce a result that is a "person" there are going to be some permutations that are more desirable than others. The limited human set still allows a wide variety - some permutations are going to give you the ability to function better than others while some permutations are going to take away abilities that almost everyone else has.<br />
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Ethics tells us that we value people because they are people. It does not tell us that value people because of a specific trait nor does it does say that not valuing a specific trait means that we devalue the person. <br />
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Ethics also tells us that we should help people who need help. It doesn't say that you look at a person and say, yep, there are permutation XYZ and it is wrong to try and help because that would "change" them in the same way that it wouldn't tell you that should leave a person bleeding to death on the street because that is an equally valid permutation of the human state.<br />
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Proponents of neurodivesity apply it to autism and value the difference simply because it is different and, as such, worth protecting. That leads to the end result of attacking people who try and alter the difference. <br />
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But the underlying ethical idea is that a person has value because they are a person and not the specific permutation or condition that they are in. That is one of the reasons why I always say person with autism rather than autistic person. The person is the thing with value not the permutation that is autism.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com9tag:blogger.com,1999:blog-1892134081049774386.post-79499252930400905322014-09-13T10:10:00.000-04:002014-09-13T10:10:04.867-04:00Research Shenanigans At The CDCUnless you have been hiding under a rock for the past couple of weeks, you might have noticed a little story going around about a "CDC Whistle-blower" or whatever you want to call it. Most of you probably know the story so I am not going to talk about the study, counter study, recording of secret informants, or whatever the current drama is surrounding the story. Plenty of other people have done that, and badly I might add (no, it IS a doctored picture of cell phone text message screen and I should know because I am a doctor).<br />
<br />
Nor am I going to add yet another opinion to the ever growing set of opinions about what the data really shows or doesn't show because I am sick and tired of reading those myself. The data in question doesn't have the ability to give any answers one way or the other. <br />
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What I do want to talk about is the the underlying story that no one seems to be talking about - the CDC's reoccurring problem with its researchers connected to its vaccine/autism research. <br />
<br />
In the current situation you have a senior scientist at the CDC hiding behind lawyers and putting out a press release - that simple act should raise massive red flags about the situation. If there was nothing to the story there is no reason why a scientist should be responding to his critics via <a href="http://www.morganverkamp.com/august-27-2014-press-release-statement-of-william-w-thompson-ph-d-regarding-the-2004-article-examining-the-possibility-of-a-relationship-between-mmr-vaccine-and-autism/">press release</a> and absolutely no reason to involve lawyers. The gentleman hired lawyers for a reason and it wasn't because this is a simple scientific dispute about the interpretation of data. The fact that he admits committing research fraud in his press release only makes it worse -<br />
<blockquote class="tr_bq">
I regret that my coauthors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.</blockquote>
Since this statement made it into a press release vetted by a law firm you can assume that the truth of the matter is much, much worse.<br />
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The thing that bothers me is that if this study covered any other topic besides autism/vaccines the above admission would trigger the retraction of the study in question and intense scrutiny of every other study that this gentleman was involved in. Science is based on trust and here you have someone admitting that they lied.<br />
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However that wasn't the CDC's response to the issue - the CDC put out a <a href="http://www.cdc.gov/vaccinesafety/Concerns/Autism/cdc2004pediatrics.html">response</a> that basically said that they are standing by the study. What makes this worse is that this isn't the first time the CDC has stood by questionable research about vaccines and autism.<br />
<br />
Anyone remember the controversy surrounding <a href="https://oig.hhs.gov/fraud/fugitives/profiles.asp">Poul Thorsen</a>? He was involved in quite a few autism studies for the CDC and he stands accused of embezzling almost 1 million dollars from the CDC in connection with those studies. He is currently under indictment and awaiting extradition to the US on 22 counts of wire fraud and money laundering.<br />
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You would think that if a lead researcher embezzles money in connection with a study that you might want to question the study's results. But no, the CDC didn't pull any of the studies that Thorsen was connected to either.<br />
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Forget the whole vaccine/autism issue - that isn't the real story here. The real story here is how the CDC is handling problems with its research. By sticking its head in the sand and refusing to confront misconduct by its researchers head on it is weakening its own reputation.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com0tag:blogger.com,1999:blog-1892134081049774386.post-38188280307828424752014-03-30T09:42:00.000-04:002014-03-30T09:42:38.361-04:00Autism Rising : The Emperor's New Clothes<div class="separator" style="clear: both; text-align: center;">
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It's that time of the year again - winter is finally starting to fade, spring is in the air, and Autism Awareness month is right around the corner. Which means that it is time to play one of my favorite games - rationalize about the latest massive increase in the rate of autism.<br />
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In case you haven't heard, the CDC just this week released the <a href="http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm?s_cid=ss6302a1_w">latest</a> in its series of reports on autism prevalence. This new report which looked at children who were eight in 2010 found that overall 1 in 68 children had a form of autism - 1 in 42 boys and 1 in 189 girls. <br />
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Since a picture is worth a thousand words, here is what the CDC's autism prevalence figures have looked like over the past 10 years.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkiNDuvIyeVX9vG5Tc77hBqvbvLBOoFcTKTHBiNn-1o5scZPpqAOsvueFUi79ISxB1lQBAQrlx1yRsOasoAOlwEbrxkVOapPdpJzYCSX-G8fEzCxJizYv9evO5my2lUfbR6BZVG_cCq8c/s1600/CDC_2014.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkiNDuvIyeVX9vG5Tc77hBqvbvLBOoFcTKTHBiNn-1o5scZPpqAOsvueFUi79ISxB1lQBAQrlx1yRsOasoAOlwEbrxkVOapPdpJzYCSX-G8fEzCxJizYv9evO5my2lUfbR6BZVG_cCq8c/s1600/CDC_2014.png" height="240" width="400" /></a></div>
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As you can see the autism prevalence figures from just this one source have more than doubled in just ten years. I have to wonder how much higher the rate is going to have to go before public health officials and the medical community start taking the problem seriously. What does the number have to be before we stop trying to explain away the increase and start acknowledging that the increase just might be because more people are developing autism?<br />
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The CDC's explanation this year is a mixed bag of more children with typical intelligence being recognized, "better awareness", and, somewhat strangely, saying that even more awareness is needed in certain areas. Entirely missing from the explanation or interpretation is anything that suggests there might be a very real problem.<br />
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How can it be that after ten years of study the CDC can't figure out if the increase is real? How can they say in their <a href="http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5601a1.htm">2000 report</a> when the new, unexpectedly high rate was 6.7 per 1,000 -<br />
<blockquote class="tr_bq">
Studies of ASD prevalence in the United States during the 1990s have identified rates of 2.0 - 7.0 per 1,000 children, a greater-than-tenfold increase from rates of 0.1 - 0.4 per 1,000 children identified during the 1980s. [...] However, because the number of persons identified for services is dependent on multiple factors (e.g., changing eligibility criteria, increased awareness, and changes in service availability), aggregate data might underestimate prevalence and should be used with caution in examining population-based trends.</blockquote>
And now, ten years later, when the rate is 14.7 per 1,000, when there are more than 2 children with a diagnosis of autism for every one back then, they say -<br />
<blockquote class="tr_bq">
The global prevalence of autism has increased twentyfold to thirtyfold since the earliest epidemiologic studies were conducted in the late 1960s and early 1970s. At that time, prevalence estimates from European studies were one in 2,500 children in the population, and by the 2000s prevalence estimates from large surveys were 1%–2% of all children. Although the underlying reasons for the apparent prevalence changes are difficult to study empirically, select studies suggest that much of the recent prevalence increase is likely attributable to extrinsic factors such as improved awareness and recognition and changes in diagnostic practice or service availability.</blockquote>
How can the expected rate of autism go from 1 per 1,000 to 6.7 per 1,000 to 14.7 per 1,000 and the explanation stay the same? <br />
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To preempt any snarky comments, yes, there are some external social factors that can explain away some of the increase without their being an actual increase in the number of people with autism. But to suggest that there were 14 people with autism in the past for every 1 that was identified but no one noticed due to social issues is just absurd. It is very hard to miss a large number of children who have functional language issues, don't socialize well, have restricted interests, repetitive behaviors, sensory issues, and the tendency to meltdown on a regular basis.<br />
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The other part of the CDC's explanation, the idea that increase is bring driven by children with more typical intelligence, is complex one that would require its own post. But, suffice it to say, like last year's "<a href="http://autismjabberwocky.blogspot.com/2013/03/autism-rising-by-numbers.html">later diagnosis</a>" theory it doesn't hold up under close scrutiny. The increasing IQ numbers could easily be attributable to the increasing availability and use of early intervention services such as speech therapy and ABA. If you start increasing a child's receptive and expressive communication ability and teach them how to better self-regulate then, everything else being equal, they will be score better on an IQ test.<br />
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Besides which, since these numbers are in line with last year's NSCH increase but are based on one static age, how can you reconcile the current findings with last years? Especially since the median age of diagnosis did not change in the current CDC report from the one before? Oh wait, you try to do it like so -<br />
<blockquote class="tr_bq">
Comparison of findings from the ADDM Network 2010 surveillance year with results from the CDC 2011–2012 National Survey of Children's Health (NSCH) on parent-reported ASD prevalence (5) revealed some similarities. Collectively, these two studies used three complementary data sources: health (ADDM), education (ADDM), and parent-report (NSCH). The report based on NSCH data estimated ASD prevalence of 2.0% among children aged 6–17 years in 2011–2012. Like the ADDM Network, NSCH also found a large increase in ASD prevalence compared with its previous estimate, which was based on 2007 data. The NSCH attributed this increase to children who received diagnoses at an older age, with a greater proportion judged as having mild (less severe) ASD according to parent report. Although not synonymous with ASD without co-occurring intellectual impairment, the increased number of children with milder ASD diagnosed at an older age in the NSCH study parallels the increasing percentage of children with normal intellectual ability and ASD identified in the ADDM Network.</blockquote>
In other words, the NSCH report attributed the increase to increased number of milder, more intelligent children being diagnosed later in life (i.e. after age 8) and the current CDC report says that is comparable to milder, more intelligent children being diagnosed earlier in life (i.e before the age of 8)? Even though the NSCH data is more recent than the CDC data? <br />
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To leave you on a happy note, the most recent data from the CDC is already quite stale because it is talking about children who were born in 2002. It doesn't tell us what the rate of autism is in children who are being born today. Given that the rate has gone up considerably every time we look at a later birth year I think it is safe to assume that the rate for children born today is much higher than 1 in 68.<br />
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If you want to get an idea of what the numbers might look like for children born after 2002 you can look at the NSCH numbers. But the NSCH data contains a lot of extra noise that makes it hard to compare to the CDC numbers. However, if you take the data from the last three NSCH data sets, pull out the data on the children who were eight at the time, and chart it with the CDC numbers by birth years you get a somewhat clearer picture -<br />
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The numbers aren't exactly comparable because of differences in how they are derived. The NSCH data is based on parental report and might be overstating the rate. But the NSCH data also covers a much larger part of the country than the CDC numbers do so might be more representative of the country as a whole. <br />
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In any event, I think it is interesting that the two disparate data sets are showing the same trend. If you measure the same thing in two different ways and come up with a similar answer then that tells you your answer is probably correct. <br />
<br />
If the trend in the two data sets has continued to current day then the autism number for children born today will be about 1 in 25. Maybe in twelve years when the CDC releases data for children born this year we will be treated to explanations about how our awareness is so much better than it was today. Because, like ten years ago today, we would finally be seeing the half of the autism population that we can't see today.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com7tag:blogger.com,1999:blog-1892134081049774386.post-87262557965818308692013-12-22T11:17:00.000-05:002013-12-22T11:27:00.148-05:00ASAN on Non-Verbal Autism<p>Just in time for the holidays, the Autistic Self Advocacy Network (ASAN) has put out a new video promoting its views of autism. The video is pretty much in line with most of what they have said in the past but there is one very prominent theme that I wanted to talk about.</p> <p>So, first thing first, if you haven’t seen the video, go watch it <a href="http://www.youtube.com/watch?v=pZVccsyDqvg">here</a>. </p> <p>Did you notice how non-verbal autism was portrayed? If you missed it, here are a few lines from the video about what it means to be non-verbal -</p> <blockquote> <p>People know what "nonverbal" means: I can't speak, so I use my computer to communicate.</p> <p>Even though I couldn't talk, my parents believed that I could understand speech.</p></blockquote> <blockquote> <p>My parent's got me a computer so I could speak with them. Once I learned to type, I never stopped. Now I have conversations with my family every day.</p></blockquote> <p>The presumption in all of these statements is that, even though a person is non-verbal because of autism, their language ability is intact. That they can still understand language when someone uses it with them and will be able to demonstrate that ability if given the proper assistance.</p> <p>Unfortunately that presumption is badly wrong and, quite frankly, very damaging. When a person is non-verbal because of autism it is because autism is disrupting their ability to receptively understand and expressively use language. This disruption is pervasive and will likely impact their ability to use language in any form.</p> <p>What the video seems to be referring to is a form of verbal <a href="http://www.nidcd.nih.gov/health/voice/pages/apraxia.aspx">apraxia</a> which is another disorder that is sometimes (but rarely) co-morbid in autism. In this disorder the person has problems speaking, i.e. verbally using language, because they have problems producing speech.</p> <p>It can be difficult to tell the difference between apraxia and non-verbal autism because there can be so much overlap and only a specialist is going to be able to make a proper differential diagnosis. But there are few differences that you will typically see.</p> <p>People with apraxia will typically have the ability to receptively understand language and the ability to expressively communicate using methods other than speech. </p> <p>People with non-verbal autism don’t typically have a problem making the basic sounds of language or putting those sounds together to form words but rather are unable to use those tools to emit language.</p> <p>But perhaps the most important difference is that the conditions need to be treated differently. I don’t know that much about treating apraxia but I do know that to teach a non-verbal person with autism to communicate you have to try and teach them how to use and understand language.</p> <p>Over time you would expect, given the proper help, that people with either condition will improve and find ways to work around their disability. But if you are expecting a non-verbal person with autism to be able to suddenly one day type fluently with both hands and use perfect language to express complex philosophical ideas about why Autism Speaks doesn’t represent their views on autism, you are going to be disappointed.</p> <p>It takes a long time and a lot of hard work to learn to use language and it doesn’t happen simply because someone reads to them and they see letters as colors.</p> <p>I know from personal experience that my two mostly non-verbal twin daughters have made significant progress over the years. They can now understand simple ideas when someone talks to them, they can repeat most words, they can say simple sentences, they can write words, they can read aloud, and they can even type.</p> <p>But what they can’t do yet is use language in any form to express more than the simplest thoughts, hold even a simple conversation, or use language to learn abstract ideas. The disruption in their ability to use and understand language is profound and is at the core of their autism.</p> <p>The twins, along with their more verbal younger sister, fall into the part of the spectrum that involves severe language disruptions. This part of the spectrum makes up at least half of all cases of autism. </p> <p>One of the things that I have learned over these past eight years is that the one thing you can’t do is sit back and expect that the person understands language or is going to regain the use of language on their own. </p> <p>You can’t just “accept” the person is different and keep throwing incredibly complex language at them and hope they will learn. The available evidence suggests that doing so can hinder a child’s ability to learn to use language.</p> <p>The good news, if there is anything good about language issues, is that there are quite a few good resources for how to approach the problem. For example, <a href="http://www.amazon.com/Teaching-Language-Children-Developmental-Disabilities/dp/0981835651/">this book</a> covers the basics of how to work on teaching communication and, if you want a a primer on what is known about the language disruption in autism, I would recommend <a href="http://www.amazon.com/Developmental-Language-Disorders-Diane-Williams/dp/1597561894/">this book</a>.</p> <p>But keep in mind that with even the best methods and using a variety of supports and accommodations that is it going to take a while to overcome the non-verbal aspect of autism.</p> M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com4tag:blogger.com,1999:blog-1892134081049774386.post-42130759637225218482013-11-19T18:47:00.000-05:002013-11-19T18:47:08.439-05:00A Tale of Two CommunitiesAn inconsistency concerning Autism Speaks has been bothering me for a while now and, in light of the controversy surrounding the organization in the past week, I thought I might take this opportunity to write about it.<br />
<br />
There is this idea that I have seen repeated in numerous places online that the "autism community" isn't all that fond of Autism Speaks. Whether it is the "pro-vaccine choice" community, the "anti-cure" "just a difference" groups, the "independents" in between, or whatever group you want to talk about, everyone seems to say that they either don't like or are ambivalent about Autism Speaks.<br />
<br />
And yet Autism Speaks is the largest and most successful autism organization in the world both in terms of influence and broad financial support. I thought at first that this success might be due to government funding or the like. But no, if you look at the organization's <a href="http://www.autismspeaks.org/sites/default/files/documents/2012_audit_autism_speaks_and_subs_financials.pdf">audited financial statements</a>, you can clearly see that most of their funding comes from the walks and other retail programs. Or, in other words, Autism Speaks enjoys broad public support.<br />
<br />
One of these things is not like another. <br />
<br />
Either Autism Speaks isn't being funded by the "autism community" but rather another group that cares about autism and yet isn't the "autism community", the "autism community" is not being truthful about its support for Autism Speaks, or the "autism community" that is talked about online is really only a small part of the actual community.<br />
<br />
If you have ever been to an Autism Speaks walk, I think the answer to the inconsistency would be clear to you. I have been to a couple of the walks and the overwhelming majority of people there were there because autism directly impacted their lives in one way or another.<br />
<br />
Just keep that idea in mind the next time you read about how "we" the autism community like or don't like something. The real autism community is much bigger than what you read about online. It may not be quite as vocal as the online community but sometimes, like when it comes to supporting Autism Speaks, it can speak volumes with its actions.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com6tag:blogger.com,1999:blog-1892134081049774386.post-55355844616977186922013-11-16T12:17:00.002-05:002013-11-16T12:17:33.576-05:00Missing the PointA couple of days ago an <a href="http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action">article</a> written by Suzanne Wright appeared on the Autism Speaks blog entitled "Autism Speaks to Washington - A Call for Action". The point of the article was that autism is not only a growing problem but one that needs a national response to solve.<br />
<br />
Parts of the autism community have been less than amused by the article. They are currently in the middle of having a collective conniption and declared that Autism Speaks is the new incarnation of the (insert your particular incarnation of ultimate evil here). <br />
<br />
While it is possible that Autism Speaks should have been more sensitive to the particular sensitivities of this small yet very vocal group, I don't think what they said was that far off base for most autism families. <br />
<br />
Since I might be the only one who thinks so, let me explain exactly what I see as the message in easy to digest points -<br />
<div>
<div>
<ol>
<li>The number of children diagnosed with autism is growing rapidly.</li>
<br />
<li>Autism is hard on families. Many families struggle on a day to day basis with autism and are doing little more than treading water.</li>
<br />
<li>Autism is extremely expensive in financial terms for everyone and in emotional and health terms for families.</li>
<br />
<li>The outcomes for children with autism are poor and taking care of someone for their entire life is pretty expensive.</li>
</ol>
</div>
</div>
<div>
So ...</div>
<div>
<ol>
<li value="5">We need a coordinated, national plan that covers everything from early detection to appropriate/best treatments to dealing with what happens when these children become adults.</li>
</ol>
</div>
<div>
None of those points should be controversial ... and yet for some reason they are. In my humble opinion, the part of the autism community that has an issue with these ideas need to get their collective heads out of their asses and start becoming part of the solution rather than being part of the problem.</div>
<div>
<div>
<br /></div>
<div>
The primary argument against these points seems to be that there was not sufficient language in the post indicating that the points don't apply to everyone with autism. My response is that that argument would apply to anything that anybody has ever said about autism. </div>
<div>
<br /></div>
<div>
There is not a single statement that you can make that would apply to everyone that has autism. There is not even one single trait that everyone with autism shares. So, by this logic, every single thing that anybody has ever said or written would need to be changed to indicate that they are only talking about a subset of autism.</div>
<div>
<br /></div>
<div>
For example, in his <a href="http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html">response</a> to the Autism Speaks post, John Elder Robison says - </div>
<div>
<br /></div>
<div>
"We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated."</div>
<div>
<br /></div>
<div>
Clearly he is committing the exact same sin that Autism Speaks did - he is making blanket statements about people with autism without quantifying that he is only speaking for some people with autism.</div>
<div>
<br /></div>
<div>
If there is one thing that drives me nuts it is hypocrisy. Another is pretending reality isn't true because you don't like it. So no matter how much Mr. Robison's royal "We" doesn't like hearing that they are part of an epidemic, the reality is that the number of people diagnosed with autism is growing rapidly for unknown reasons. Go look up what the word "epidemic" means.</div>
<div>
<br /></div>
<div>
Someone asked me on another blog if there is a way to have an honest conversation about autism and my answer was no. It is not currently possible to have an honest conversation because to have any honest, open conversation you can't start from the position that one side's view are wrong. <br />
<br />
When it comes to autism, you have to be able to be free to describe the problems associated with a medical label without someone taking offense because you said something that they don't like or don't want to believe.</div>
<div>
<br /></div>
<div>
More importantly, when you are talking about public health issues such as autism you either start your conversations based on reliable, accurate information or you don't. <br />
<br />
If you don't then don't waste anyone's time pretending that you are talking about anything other than your own ignorant opinion. If you do then start with the basics about the autism population as a whole. Start by answering some simple questions about autism such as -</div>
<div>
<ol>
<li>How many people are receiving a diagnosis of autism and how quickly is the number changing?</li>
<br />
<li>What are the known, proven causes of autism and the increase? Not the "we think", "it looks like", "it could be" but rather causes that can be demonstrated and can be shown in multiple data sets. For example you can't say its older parents without demonstrating empirically that the parents of children on the spectrum are in fact older, ruling out other possible related factors (i.e. the association between socioeconomic status and the age that you have children), and showing exactly how older parents lead to biological changes that lead to the behaviors of autism.</li>
<br />
<li>What are the typical impairments in communication and how severe are they? How many people have the ability to use functional communication at all, how many can carry on even simple conversations, how many can have complex conversations?</li>
<br />
<li>How many people are functionally impaired enough by their autism that they have or appear to have intellectual disability? How many appear as borderline intellectual disabled?</li>
<br />
<li>How many people go on to develop other, related conditions such as epilepsy that are much more common in autism?</li>
<br />
<li>As the children become adults, what happens to them? How many are able to live independently and hold down a job? How many are unable to take care of themselves? Where do the ones that are unable to take care of themselves live?</li>
</ol>
</div>
<div>
Start answering these questions for yourself from reliable, evidence based sources and ignore the autism talking heads. Don't take theories from people who have a stated ideology, whatever that ideology might be, at face value. And for heaven sake, don't assume that someone is an expert on autism because they have or claim to have autism.<br />
<br />
Go to the original sources and think for yourself.</div>
<div>
<br /></div>
<div>
If you do that and put in the time learning about the reality of autism rather than the feel good or doomsday nonsense that comes from so many sources then you might start understanding that the Autism Speaks post isn't that far out of line with reality. It isn't a pretty or particularly happy reality or one that I want to embrace. But the thing about reality is that it doesn't require us to believe it in order to be true. </div>
<div>
<br /></div>
<div>
As much as I don't like Autism Speaks, the post was right. Autism is a growing public health crisis and one that we ignore at our own risk. </div>
</div>
M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com7tag:blogger.com,1999:blog-1892134081049774386.post-34654929589057513992013-08-18T18:37:00.000-04:002013-08-19T17:54:48.031-04:00StimmingStimming is harmless, right? Maybe it is just me but it sure seems like many autism self-advocates think that stimming is something harmless or is only a problem because of other people's opinions.<br />
<br />
Here's one recent <a href="http://musingsofanaspie.com/2013/07/24/socially-inappropriate/">example</a> -<br />
<blockquote class="tr_bq">
But people tell autistic kids not to stim in public all the time. Again and again I see conversations and articles insisting that stimming–or if they’re trying to be politically correct, certain types of stimming– isn’t appropriate public behavior. </blockquote>
<blockquote class="tr_bq">
Really? And why is that? Who exactly does stimming embarrass? Not the autistic person who’s doing it. </blockquote>
The idea here is that stims happen, can't be controlled, and that the only reason that parents try to stop stims is that they are embarrassed.<br />
<br />
Here's <a href="http://www.thinkingautismguide.com/2011/11/on-quiet-hands.html">another one</a> that is so hyperbolic that it would be funny if it weren't so sad -<br />
<blockquote class="tr_bq">
Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you... </blockquote>
<blockquote class="tr_bq">
if you... </blockquote>
<blockquote class="tr_bq">
if you...</blockquote>
The overriding theme of this last one is that stopping or redirecting stims to tantamount to child abuse. Yes, the point is that the common phrase "quiet hands" is somehow taking away this person's voice. And here I was under the impression that it is autism itself that causes problem with expressive communication. Silly me.<br />
<br />
I could go on to point out other examples of this meme but I think you get the point - stopping stims is bad. <br />
<br />
As a parent whose children who have to struggle with autism, I couldn't disagree more. Stims are not some harmless thing that can be ignored. Stims can and regularly do stop a person with autism from being able to function or learn. And, in some cases, stims can directly harm a person or put them in harms way.<br />
<br />
Normally I would just let these things go and simply ignore what is being said. The people who are making statements like these presumably have a diagnosis of autism and know how their personal stims affect their daily lives. I might think that they take an extremely shallow view of stimming and what it is like for people who aren't quite so high functioning but I don't like to nitpick what people with a disability say about their disability. Especially since a lack of understanding of what others are thinking or experiencing is a large part of the disorder that they are struggling with.<br />
<br />
However, this time I ran across that first article because <a href="https://twitter.com/DrBrocktagon/status/361469252055740416">someone</a> pointed it out on twitter and highlighted it as a "great post and discussion". This person, in my opinion, really should know better and should understand the nuances and issues surrounding stimming in autism. <br />
<br />
But apparently that isn't the case. Apparently the idea that stims are harmless is gaining traction and acceptance even among people who should know better. So lets talk about what is wrong about that idea starting with a definition of what a "stim" is. <br />
<br />
A stim is any behavior whose purpose is self-stimulation. The behavior is typically going to target or involve one of the following things -
<br />
<ol>
<li>One or more of the five senses (sight, hearing, taste, touch, smell)</li>
<li>The vestibular sense (balance, movement, acceleration)</li>
<li>Pain or pleasure</li>
<li>Anything else that can induce a feeling or sensation</li>
</ol>
<div>
In one sense, everybody has stims because everybody has behaviors that are designed to stimulate themselves. But there are very clear differences between a "typical" person's stim and an autistic stim and these differences come down to a matter of choice and a matter of degree. A "typical" person can control their behaviors and can choose when and where to engage in them. They control their behaviors, their behaviors don't control them. </div>
<div>
<br /></div>
<div>
In autism, there is a definite lack of choice and a definite lack of ability to control the level or degree of the stimulation. Stims happen for a variety of reasons, some internal, some external but the person with autism doesn't necessarily have the ability to rein in or stop the behaviors even if they wanted to.<br />
<br />
So, the question is then why do parents try to get their children to stop stimming? If it stimming is really a compulsion that people with autism are being forced to do or a way of dealing with some external factor, why do mean parents like myself try to squash it?</div>
<div>
<br />
The short answer is that the cause, effect, and context of the stimming very much matters. Stims happen for a variety of reasons, have variety of effects, and both the cause and effect can change depending on the context of what is going on when the stim happens. You can't make blanket statements about a stim being good, bad, or harmless without considering the whole picture.<br />
<br />
Another reason to address stimming is to give the child the ability to recognize what is causing the need to stim, giving them the skill set to deal with the stim, and teaching them to better regulate themselves and their environment so that they can function better. <br />
<br />
Though the overriding reason, to me at least, is to give the person the ability and option of controlling their behaviors rather having their behaviors control them. <br />
<br />
Let talk a little bit about the cause, effect, and context of stimming and why it matters starting with some common causes of stimming. Here is a short list of some common causes -<br />
<ol>
<li>Sensory overload or underload. One of the things about sensory processing in autism that is often overlooked is that the sensory imbalances goes both way - there are sensory avoidance issues as well as sensory seeking issues. A stim can be caused by a need for more sensory input as easily as it can be caused by too much input.</li>
<br />
<li>An external factor that increases the person's level of stress, anxiety, fear, or some other mental state. This reason is really about a failure of self-regulation - something else happens and the the person has no way to cope with the situation and resorts to stimming to relieve the pressure.</li>
<br />
<li>An internal failure of self-regulation. This is an internal failure to self regulate some aspect of a life and this failure leads to stimming. A couple of examples would be not sleeping at night, not eating when hungry, or not stopping to rest when tired.</li>
<br />
<li>Biological imbalances. People with autism can (and often do) have certain biological imbalances that can lead to the need for stimming. For example, pica or mouthing can be caused by iron deficiency. </li>
<br />
<li>A compulsion for the stimulation, i.e. a repetitive behavior. Another way of looking at this is that the stim and resulting sensation is addictive - the person craves the sensation and doesn't feel right without it.</li>
</ol>
As you can see, there are many different and varying reasons for stimming. The above list is far from complete but each of the causes on the list needs to be addressed differently. You can't address a sensory issue the same way as you address anxiety nor can you address iron deficiency the same way as lack of sleep. <br />
<br />
The point is to properly evaluate and address a stim you need to get some idea of why it is happening, what a person is avoiding, or what they are getting out of it.<br />
<br />
Along those same lines, an increase in the number or types of stims can point to a some new problem or issue that needs to be addressed. If you are dealing with a person who is either non- or minimally verbal then this change might be the only sign of the problem. For example, my children are sensitive to noise so they have a "stim" where they hold their ears. However, if they start holding their ears more than normal than it can be a sign that they have an ear infection. Or it could be a sign that something else is stressing them out.<br />
<br />
Lets move onto the effects of a stim. Simply put, the effects of a stim are as varied as the forms of the stims themselves. But, in general, you have to consider the following questions when evaluating whether a stim needs to be addressed -<br />
<ol>
<li>Does the behavior interfere with the person's ability to function or learn?</li>
<li>Does the behavior interfere with another person's ability to function or learn?</li>
<li>Does the behavior harm the person or does the behavior pose a safety risk?</li>
<li>Does the behavior harm another person or does the behavior pose a safety risk?</li>
</ol>
The overall goal of addressing stims is to stop or redirect behaviors that stop a person from being able to function or learn. For example, if you have a child at school who can't sit in a chair and has to constantly move about the room and scream, then they are not going to be able to function and learn at school. If you put them in a mainstream classroom then their behaviors might stop the other children from learning as well.<br />
<br />
The goal is also very much about stopping the child from endangering themselves or others. Contrary to popular myth, flapping, spinning, and humming aren't the most common stims. There are quite a few others and many of them can be downright problematic.</div>
<div>
<br />
To give you an example, two of my daughters have a stim where they hit or push on their chins with the palm of their hands when they are either stressed or tired. If they are "just" pushing on their chin it isn't the end of the world but it certainly isn't good for them. However, it is a short step from just pushing to slamming their palm into their chin and that could cause some real damage. As a result, we do not tolerate that particular stim and stop them every time we see them start it.<br />
<br />
The last part of the equation is that the context of the stim can influence or change both the cause, effect, and acceptability of a particular stim. Some stims are going to be perfectly fine in one situation but very problematic in others. Take for example the common stim of flapping. Flapping comes in many forms, from a simple hand movement all the way up to moving the entire arm rapidly.<br />
<br />
Flapping is harmless, right? Well, yes and no - it all depends on where you are and how you do it. <br />
<br />
If the person is at home and relaxing them flapping is probably going to be harmless and shouldn't be stopped. But what if they are standing close to someone and their flapping involves their entire arms? What happens if the person is standing in a crowd of people and starts hitting people around them with their flapping arms?<br />
<br />
Taking it one step further, when a person is flapping they usually are paying less attention to their surroundings. So what happens if a person starts flapping while they are crossing a street or walking through a parking lot and stops paying attention to the cars going past?<br />
<br /></div>
<div>
Neither one of these is a contrived example - we have had both happen several times to the point where we have had to work on getting the kids' flapping under control - and flapping is a relatively harmless stim. There are stims that are far worse and more impairing than flapping.</div>
<div>
<br />
The final part of the puzzle is what you do about problematic stims and this is the major bit that self-advocates don't seem to get or understand. Children with autism do not learn like typical children. You can't necessarily just talk to them about what part of a stim is a problem or when it is or isn't appropriate like you could a "typical" child.<br />
<br />
At best the child with autism might have trouble applying what you saying when faced with the urge to stim, at worst they won't have the functional communication to understand what you are trying to explain. This is why many parents use one of the forms of behaviorism to help them teach their children.<br />
<br />
Two of the core ideas with behaviorism is that you have to be consistent and that you start with small, manageable bits of behavior and work your way up. You don't start with a problematic stim in the most stimulating and stressful environment, you instead start teaching them to control the stim in a more relaxed, less stress environment and work up to the harder environment. And, if the child doesn't have the ability to understand that different locations have different rules, you have to consistently stop or redirect the stim every time that it appears. Alternatively you establish one place were the stim is allowed and stop it everywhere else.<br />
<br />
I've really just scratched the surface of the issues involved with stimming in autism but I hope the point is clear. Stimming is not a one dimensional "the parents are just embarrassed" sort of issue and any discussion that just focuses on that is not a "great discussion" of this complex issue.</div>
M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com23tag:blogger.com,1999:blog-1892134081049774386.post-85454187021428235762013-04-07T10:54:00.000-04:002013-04-07T10:54:27.211-04:00Autism-Vaccine War Reaches New Height of StupidityCan the vaccine-autism wars on the Internet get any more absurd? <br />
<br />
Dan Olmsted - "<a href="http://www.ageofautism.com/2013/04/weekly-wrap-big-disconnect-in-autism-coverage.html">Non-believers are Nazi sympathizers</a>" -<br />
<blockquote class="tr_bq">
The report goes on to quote the DeStefano/CDC study about how the antigens in vaccines don't correlate with a risk for autism. Even in the self-protective annals of the CDC, this study is a stinker. </blockquote>
<blockquote class="tr_bq">
But putting that aside, the fact that Jalen fell off a developmental cliff TWO OR THREE DAYS after vaccination ought to make somebody in the editing room at that TV station, or some mainstream outlet somewhere, sit up and take notice. </blockquote>
<blockquote class="tr_bq">
This happens all the damn time, people! These kinds of parental accounts, combined with the $2 billion plus awarded in vaccine court, including to Hannah Poling; the known properties of vaccination, and the concommitant rise of mercury and vaccines with the autism epidemic, are far more than enough to start asking tough questions. </blockquote>
<blockquote class="tr_bq">
It's not going to be very PC to say this, but one of the most vivid images from the end of World War II is the Allies making local villagers walk through a newly liberated concentration camp. The message was -- how can you say you did not know?</blockquote>
Orac, aka David Gorksi - "<a href="http://scienceblogs.com/insolence/2013/04/06/can-antivaccinationists-knock-it-off-with-the-autism-holocaust-analogies-already/">You hate your children</a>" -<br />
<blockquote class="tr_bq">
It’s very clear that many antivaccinationists hate autistic children. The language they use to describe them makes that very clear. Such children are “damaged” (by vaccines, of course); the parents’ real children were “stolen” from them (by vaccines); they are “toxic” (from vaccines); the “light left their eyes” (due to vaccines). Autism is an “epidemic,” a “tsunami,” even a “holocaust,” with “denial” of that “holocaust” being equivalent to Holocaust denial. All of this likens autism to a horror on par with these calamities, and paints vaccines as the instrument of annihilation of antivaccinationists” “real” children.</blockquote>
Both arguments are full of it. <br />
<br />
Any possible connection between vaccines and autism is not straightforward and obvious. Yes, there have been some high profile cases of vaccines being implicated in autism but no one has been able to document a larger or more widespread relationship. Just because the average doctor, parent, or journalist follows the lead of the experts in the field - experts who have served them well - does not mean that they are akin to Nazi sympathizers.<br />
<br />
And on the flip side, the idea that talking about perceived damage to your children means that you hate them? I don't think I quite have the words to describe how utterly stupid that argument is. I'm not quite sure what sort of person hears a parent say that they think their child was injured and turns around and tells them that they must not love their child. <br />
<br />
I think this <a href="http://www.smbc-comics.com/index.php?db=comics&id=2939">comic</a> from SMBC sums up the current state of the autism-vaccine wars quite well and, if the above exchange is any guide, we might be close to the optimal solution in the final frame-<br />
<br />
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<br />M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com5tag:blogger.com,1999:blog-1892134081049774386.post-11180294412255695552013-04-01T04:00:00.000-04:002013-04-01T19:13:32.442-04:00For Sale : Extra Autism AwarenessToday, April 1st, I am holding a sale on autism awareness. As you might know, tomorrow, April 2nd, is the sixth annual autism awareness day. I find myself with some extra autism awareness, having accumulated the equivalent of over 50,000 days of autism awareness in just a few short years, so if anyone finds themselves a little short, I am willing to part with some awareness.<br />
<br />
If you are interested in some of my accumulated extra awareness, you will have the chance to experience, by proxy, the purely happy, wonderful little girls that are my children. You will be in awe of what they can do in spite of facing significant challenges from autism and how hard they are willing to work to get past their limitations. <br />
<br />
You will get to experience the joy when they manage to break through one of the limitations that autism has placed on them and be able to get to know them in a whole new way. You will have the chance to know that they are not defined by their autism and that they are their own individuals, whole and complete, even if they cannot always show it.<br />
<br />
You will have to look far and wide to find awareness of sweeter, more lovely, or affectionate little girls. Everyone who has ever worked with or known any of the three has quite literally fallen in love with them, for good reason, and you will too.<br />
<br />
However, there are a few disclaimers that I am obligated to include as well. <br />
<br />
You will come to know and love the slogan "sleep is for the weak". If you enjoy actually getting a solid eight hours of sleep a night or having the opportunity to have uninterrupted sleep more than once a week, this is not the awareness for you.<br />
<br />
If you are the sort of person who is unable to put aside your affection and love for your child and do what is in their best interest, then this is not the awareness for you. You will have to experience the emotional consequences for acting in a way that will best help your child while not wanting to do it at the same time. Remember, it isn't about you, it is about the children.<br />
<br />
You if would like to grow old gradually or gracefully and not start looking old before your time, then this is not the awareness for you. Seriously, when you get your hair cut the white hair will make it look like it is snowing.<br />
<br />
Most importantly, if you have dreams of there ever being a time when you don't have to worry about the future or having a time when the awareness can fade, then this might not be the awareness for you. I don't have any way of knowing what the future might bring or what the outcome will be, but there is a very real possibility that this awareness and the constant worry for the future will be with you from now until your last day.<br />
<br />
But don't let those few disclaimers get in the way of stocking up on extra autism awareness in time for tomorrow's awareness day. After all, the chance to get to know these wonderful children is well worth the the extra cost. All of the fashionable people will be sporting extra awareness and you should too.<br />
<br />
~~~~<br />
<br />
Hmm, you still here reading? Since this post is going to be up on autism awareness day, I guess there should be a serious point rather being rather flippant about the whole thing. OK, here is the little bit of the serious that I hinted at above, but I don't think it is going to be a popular point.<br />
<br />
There is a lot of talk in the autism community about how autism advocacy should be entirely about the people who have autism. After all, they are the ones who get to experience the joy of autism first hand. But the one idea that gets lost in all of the rhetoric of "nothing about us without us" and other feel good slogans such as "I shouldn't have to change" is the cost of autism to entire extended family. <br />
<br />
For every one person with autism there are typically going to be at least three, four, or many more other people who are going to be profoundly impacted by that person's autism as well. So, as unpopular as this idea is going to be, autism advocacy shouldn't be completely about just the people who have autism. <br />
<br />
Don't misunderstand, this isn't some woe is me rant from yet another parent. I am not saying that autism has ruined my life or any other such tale of misery. I actually like my children and enjoy spending time with them; as I said above, they are truly great little girls and I wouldn't give them up for the world. I may wish that they didn't struggle with autism but I certainly wouldn't trade them for other "normal" children.<br />
<br />
But, at the same time, living with autism - even if you don't experience it first hand - extracts a high professional, social, personal, and health cost and these costs are not limited to the immediate family. Everybody who is involved feels some of the impact of autism whether it be the parents who bear the brunt of the dealing with the joy of autism on a daily basis to grandparents to other family members and friends who try to help out. <br />
<br />
Anyway, that is the serious bit of awareness - the cost of autism to people other than those who have autism. So, if you happen to know a family whose children have autism (and given how common it is now, you probably do) try to be nice to them. They are dealing with a lot and can use any help you can provide.<br />
<br />
ThanksM.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com0tag:blogger.com,1999:blog-1892134081049774386.post-21896295519541408552013-03-30T19:30:00.001-04:002013-03-31T20:02:55.141-04:00Vaccines Exonerated From Being Involved in Autism, AgainYet another paper has been released that shows that, yet once again, vaccine have nothing do with with autism. This paper adds to the piles and piles of studies on this topic that are meant to reassure parents that vaccines have no relation whatsoever to autism. <br />
<br />
Unfortunately, this paper appears to be yet another paper that purports to dismiss a link between autism and vaccines without actually addressing the core underlying issues. Or, to be perfectly honest, I should say that it seems to be yet another paper dismissing the link because I only skimmed it and didn't analyze it in any depth. <br />
<br />
I only read enough of the paper to realize that it didn't tackle any of the questions that I have about a potential link between vaccines and autism and repeated some rather obnoxious speculations about how an infant could "theoretically could respond to thousands of vaccines at once" before I lost patience and interest.<br />
<br />
If you are interested, the full text of the paper is available <a href="http://www.jpeds.com/webfiles/images/journals/ympd/JPEDSDeStefano.pdf">here</a> and I encourage you to read it and form your own opinion.<br />
<br />
I don't think that anybody (rational) would argue that a healthy child *should* be able to easily take a single vaccine or even a few of them at a time, although I would not go anywhere near Dr. Offit's claims a child can handle the equivalent of thousands of shots at once. I don't think most (again rational) people would argue that vaccines aren't a good thing.<br />
<br />
Just to be perfectly clear here in case someone wants to try and misinterpret what I am saying, vaccines = good. You should vaccinate your children although you should do so in a manner that is consistent with your child's well-being and not simply because some schedule says that it must happen on this date. I will elaborate on that last bit in a minute.<br />
<br />
But getting back to the core issue, one that I don't think I have ever seen tackled directly by mainstream medicine, is whether there is something different about the children who (theoretically) develop autism after vaccinations or whether it is whatever else if going on at the same time or immediately after that causes the problem.<br />
<br />
Is it the stress of vaccination or the resulting fever on the body that exacerbates some underlying issue ala Hanna Polling, is it the constant use of acetaminophen to treat resulting fevers that depletes potentially scarce supplies of glutathione leading to other biological disruptions, is it the extra stress on an already disregulated immune system, is it a combination of all of these or something else entirely, or it just figment of parents' imaginations?<br />
<br />
I know from my own experiences with my twin daughters that medical practitioners sometimes seem more concerned with giving vaccines on a rather arbitrary and predefined schedule rather than when it is in the child's best interest. The twins, at one year old, had just both been through a rather nasty cold/flu, rotavirus, an ear infection, and several rounds of antibiotics within a few short weeks when they received the MMRV at a routine visit.<br />
<br />
Before this time period they were developing slowly but within normal parameters for twins but afterwards they lost some skills and their development stalled for years. I certainly don't think the vaccine "caused" their autism as their younger sister also went on to develop a milder form of autism but I certainly think it did add stress when they could least handle it. It certainly wasn't a medically prudent time to be giving them a vaccine.<br />
<br />
But here we have yet another paper suggesting that parents like me are just imagining things without actually taking the time to look at specific children to see what else might be going on that could change a routine, safe, and necessary medical procedure into something else.<br />
<br />
I am getting rather sick and tired of papers trying to absolve something of responsibility when we can't even be sure what the thing is. I completely understand that the existing body of literature shows that there isn't a simple causative relationship between vaccines and autism. But it is a large jump from that statement to the presumption that vaccines play no role whatsoever in autism. <br />
<br />
Before we can completely clear vaccines of any involvement in autism, we have to first understand what autism is and what can cause it. Only then will we be able to analyze whether there is some involvement or not.<br />
<br />
So how about we spend more time doing basic research into the biology of autism and investigating the scores of biological abnormalities seen in people with autism and less time beating a dead horse. The only way to convince people who have questions is to actually answer those questions, not to keep repeating the same thing over and over again.<br />
<br />
Sorry, I will get off the soapbox now.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com0tag:blogger.com,1999:blog-1892134081049774386.post-23282328951666813572013-03-23T10:32:00.001-04:002013-03-23T10:32:11.959-04:00Autism Rising : By the Numbers<div class="separator" style="clear: both; text-align: center;">
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As I talked about <a href="http://autismjabberwocky.blogspot.com/2013/03/autism-rising-here-we-go-again.html">last time</a>, a new <a href="http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf">paper</a> was just released that found the the prevalence of autism in school aged children was about 2%. This figure is (yet another) sharp upwards revision from last year's surprising 1.1%. It seems like every year or so we are treated to yet another vastly higher estimate of autism prevalence and every year we are treated to the same reasons for the increase.</div>
<br />
Well, the good news is that the increase shown in this years data is being blamed on something slightly different. The bad news is that this year's explanation doesn't hold up on close examination. <br />
<br />
The official line this years seems to be that the roughly 70% jump in the autism rate is mainly attributable to children with a milder form of autism being missed at a younger age and being "discovered" later on in life. Which is basically a variation on the "better diagnosing" line that has been used to explain away part of the increases for more years than I can count.<br />
<br />
The conventional wisdom before this paper is that most - but not all - children with autism will be diagnosed by the time they are eight years old and that children with a diagnosis at that age are more likely than not to keep the diagnosis. There are a couple of reasons for this belief, not the least of which is by this age most children have been in school for two or three years and that problems that their autism cause will be apparent to their teachers and when they are compared to their typical peers. It also doesn't hurt that that it has been demonstrated empirically by several studies over the years.<br />
<br />
This paper is seeking to amend the conventional wisdom to allow for a large number of "milder" case to be diagnosed at a later age and for this group to account for a substantial portion of the autism population.<br />
<br />
So, the question is then whether the data underlying this paper supports that idea or not. To answer that question I pulled the underlying <a href="http://www.cdc.gov/nchs/slaits/nsch.htm">data</a> from the 2011/2012 National Survey of Children's Health and did some analysis of the data.<br />
<br />
For the following analysis I am using the children in the NSCH data set that have a current diagnosis of autism. I will also be using the 1.1% (1 in 88) prevalence estimate that was published by the CDC last year and will also be making some brief usage of the data from the NSCH 2003 and 2007 survey years. These different data sets aren't completely compatible but they are good enough for my purposes.<br />
<br />
First up, lets consider the idea that a substantial number of children in the 2012 population came a diagnosis later in life. If the explanation offered by the paper is true and that a large part of the 0.9% increase is due to later diagnosis then that should be apparent by looking at the age when the children in the survey were diagnosed.<br />
<br />
The good news is that the 2012 survey has this data so we can directly look at the number of children diagnosed by age. I am going to used the following age ranges because they (should) be representative of the different times when a child might be diagnosed.<br />
<ul>
<li>Ages 0 to 4 are children who are not yet in the school system and represent the group that is picked up by early screening and early intervention efforts.</li>
<li>Ages 5 to 8 represent the children who are just entered the school system. Conventional wisdom tells us that most children with autism will be detected by the end of this period.</li>
<li>Ages 9 to 12 are children who have been in school for a while but have not yet experienced the higher social demands that comes with adolescence</li>
<li>Ages 13 to 17 are the children who are likely to experiencing the increased social demands of adolescence and where you would expect the children with the mildest forms of autism - forms that are primarily social in nature - to be detected.</li>
</ul>
Below is a chart that shows the percentage of the autism population that was diagnosed in each age range.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCe8ReVXMkgz3NGjhdSKTwpmOvWlZdBenpJjWuBE-SQx8CFtTBgYTcHx0MuTs2Y7eLrOTtIbnbT808Jfo8v_73pEIBg5E6t5ffjGqkw_nrxaMKJOOzcUt_ZKx6nGOGMmPe48D-iOZEvYg/s1600/rising_chart1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="291" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCe8ReVXMkgz3NGjhdSKTwpmOvWlZdBenpJjWuBE-SQx8CFtTBgYTcHx0MuTs2Y7eLrOTtIbnbT808Jfo8v_73pEIBg5E6t5ffjGqkw_nrxaMKJOOzcUt_ZKx6nGOGMmPe48D-iOZEvYg/s400/rising_chart1.png" width="400" /></a></div>
<br />
As you can see the majority of children, about 82%, were diagnosed by the time they were eight years old, as is expected. A simple back of the envelope calculation suggests that 1.6 of the 2% prevalence was diagnosed by age 8 which leaves 0.4% being diagnosed later in life, although that depends on what you mean by later in life. If later in life means older than 8 that means the 18% of the population but if later in life means the teen-aged years (13 and up) then that means only 4% of the population.<br />
<br />
Regardless, the idea that the majority of the 0.9 increase in autism prevalence is being cause by older children being missing simply doesn't hold water even under a generous reading of "older children".<br />
<br />
But that is across the entire data set. Lets do a similar analysis but break down the prevalence not only by the age the child was then they were diagnosed but also by the age that they were when they were included in the survey. The following chart does exactly that and charts the prevalence per 10,000 using the same age brackets as last time.<br />
<br />
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<br />
Now this chart shows a couple of very interesting things.<br />
<br />
Lets start with the most obvious thing - the age of diagnosis in the oldest children shows a different profile than the data set as a whole. In this group, the number of children diagnosed before the age of 8 roughly corresponds to last year's 1.1% prevalence and the additional increase of prevalence is coming from children who were diagnosed after the age of 8. Just as a point of reference, the children in this group are older than the children that the CDC's 1.1% estimate was based on.<br />
<br />
So in the oldest children, the paper's idea that the increase in prevalence comes from older children being diagnosed does hold up. The numbers work out pretty well too, you could attribute about 0.7 of the increase in prevalence to older children being diagnosed.<br />
<br />
But if you look at the younger age groups you see the bad news. Both of the other groups of school aged children have a higher prevalence than the oldest age group and both groups are made up almost entirely of children diagnosed by the age of 8. Or, in other words, the paper's idea falls completely apart and the higher prevalence in the younger children is not being caused by missed diagnosis of milder children when they get older.<br />
<br />
Then there is the other little disturbing trend that is visible in the data - the number diagnosed in each age range is climbing as the children get younger. Look at how the blue section (children diagnosed between 0 and 4) is larger in the 9-12 group than it is in the 13-17 and the 5-8 group is larger than the 9-12. The same pattern appears in the red section.<br />
<br />
Keep in mind when you look at the chart that some of the sections include the current age are going to be incomplete. So the green section in the 9-12 year olds is going to grow as this age group gets older as will the red section in the 5-8 year olds, as will the blue bar in the 0-4 year olds.<br />
<br />
There seem to be two trends in this data - there are children being diagnosed later in life (who are presumably milder) AND the actual prevalence of autism is growing per birth year.<br />
<br />
To illustrate this, lets look at the data from the 2003, 2007, and 2012 NSCH survey years. The earlier years don't have the age of diagnosis available and the 2003 survey didn't ask the exact same questions but it is close enough.<br />
<br />
The following is the approximate prevalence per age from all three surveys, the data from the earlier surveys has been shifted to the age that the child would have been in 2012 and I removed the 0-4 age group because, as you can see above, the detection rates are quite low in this group.<br />
<br />
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<br />
<br />
The same two trends are visible here as well - the prevalence for the specific age grows each survey year but the prevalence in children born later is higher still.<br />
<br />
I think this data makes the overall trend quite clear - the rate of autism is growing by each birth year.<br />
<div>
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M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com4tag:blogger.com,1999:blog-1892134081049774386.post-13676018307709604122013-03-20T10:37:00.002-04:002013-03-20T10:37:55.085-04:00Autism Rising : Here We Go Again<div class="separator" style="clear: both; text-align: center;">
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Ah here we are, another year, another autism awareness right around the corner, and yet another new estimate of autism prevalence from the Centers for Disease Control. But don't worry, the non-real "its all better awareness" increase is only about a 75% increase from the last "its all better awareness" increase.<br />
<br />
The new number, which seems to be based on yet to be released survey data from <a href="http://www.childhealthdata.org/learn/NSCH">National Survey of Children's Health</a> (NSCH) for 2011/2012, is that 1 in 50 school aged children (aged 6 to 17) have a form of autism.<br />
<br />
For comparison -<br />
<div>
<ul>
<li>The <a href="http://autismjabberwocky.blogspot.com/2009/08/autism-rising.html">last estimate</a> of autism prevalence from the NSCH in 2009 was 1 in 100.</li>
<li>The <a href="http://www.cdc.gov/ncbddd/autism/data.html">current estimate</a> of autism prevalence of children born in 2000 is 1 in 88</li>
</ul>
<div>
<div>
So the current estimate from the NSCH probably contains estimates for children born after 2000, possibly as late as 2005-2006, but the rates in these children are going to be diluted by the (again probably) much lower rates in older children. If I had to guess, I would guess that this most recent data shows an even higher rate than 1 in 50 in the youngest children.</div>
<div>
<br /></div>
<div>
I have to guess because no official study or data has been released yet. As is quickly becoming the norm, we first find out about major announcements like this from the <a href="http://www.bloomberg.com/news/2013-03-20/autism-diagnoses-rise-among-u-s-children-cdc-finds.html">mainstream media</a> before we have a chance to look at what the actual data says.</div>
</div>
</div>
<div>
<br /></div>
<div>
It will be interesting to see what the data actually shows when it finally gets released.<br />
<br />
UPDATED : The report from the CDC is available <a href="http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf">here</a>.</div>
M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com1tag:blogger.com,1999:blog-1892134081049774386.post-73979015623675684812013-02-02T12:58:00.000-05:002013-02-02T12:58:06.580-05:00The Autism Community's Response to Planned ViolenceI took down my prior entry about the post at Wrong Planet because it appears that the offending post was removed from the site and I don't want that person's words to live on at my site. But the post, and the way it was mishandled by Wrong Planet, reminded me of the much more worse incident in Newtown and how the autism community responded to that.<br />
<br />
I didn't write anything about the tragic incident in Newtown because there wasn't (and still isn't) much known about why Adam Lanza did what he did or whether his mental problems involved autism or not. I also didn't write about it because the incident hit a little too close to home. All three of my children are in a single elementary school and their autism would make all three sitting ducks if someone like Lanza showed up at their school.<br />
<br />
So I did what any sane parent would do, I stuck my head in the ground and tried to ignore that the incident happened. I saw the initial tentative link to autism, I saw the response from the ignorant public, and I was (for once) extremely glad that my children are disabled enough by their autism that the incident would pass by unnoticed for them. <br />
<br />
But what I saw of the autism community's response to the incident before I started ignoring it bothered me almost as much as the initial incident. Here you have a community who fights to get their disabled members accepted by society, who fights to break down the stigma associated with autism, and who tries to increase the general awareness of autism is and isn't and the almost universal response from this community was to throw people with other mental disorders under the bus.<br />
<br />
The community could have taken this tragedy as an opportunity to talk about the desperate need for more services and supports for all adults with a disability. The community could have talked about how there is a growing problem of young disabled adults who are utterly dependent on their parents for support and what impact the lack of supports has for these families. But instead of doing that, the autism community instead tried to distance itself as much as possible from the incident and draw a clear distinction between people with autism and people with other mental conditions.<br />
<br />
There were statements about how there is no scientific or systematic link between planned violence and autism which completely ignores the inconvenient fact that there isn't really a large association between most mental disorders and planned violence. Yes, people who do these horrific things tend to have mental problems (or at least we like to pretend that is the case afterwards) but most (i.e. 99.9%) of people with mental problems don't commit acts like this. <br />
<br />
But instead of working to get rid of the stigma associated with mental disorders in general, the autism community instead tried to separate autism from those other conditions.<br />
<br />
These statements also ignore the inconvenient fact that the first wave of the autism tsunami is just now reaching adulthood and we really don't know what they are going to be like. Regardless of why the number of people with autism has grown exponentially over the past twenty years, the fact remains that there are substantially more people with autism today than in the past. So the people in the past who were diagnosed with autism may be quite different than those who are today and the research into what they are like might not be quite accurate.<br />
<br />
Then there was a lot of pontificating about how autism is a developmental disorder and isn't a mental illness and while technically true, the point is rather moot. I don't think it really matters whether a person never developed a certain mental facility or whether they had it and lost it to a disorder later in life, the important point is that the person doesn't have facility or ability you would expect them to. So the goal here again was to separate people with autism from people with other mental conditions.<br />
<br />
But perhaps the most disturbing statements were from adults who claimed to have autism themselves. Maybe I am a victim of selective reading but I ran across numerous comments from high functioning adults with autism on all the major media outlets and many of them showed a complete lack of respect for people with mental disorders. <br />
<br />
As one kind comment from an aspie on CNN said (I am paraphrasing here), autism is just a difference not some mental illness. Those people with mental problems are sick and need drugs to help keep them from hurting other people.<br />
<br />
The hypocrisy of advocating for acceptance for your own differences and problem while at the same time condemning other people for theirs blows my mind.<br />
<br />
Or, in short, I was extremely disappointed that the autism community's almost universal response was to try and draw a line between autism and those other conditions. The autism community talks a lot about acceptance of differences but, when it was presented a chance to live up to its principals, the community came up short. Instead of standing up for people with all sorts of differences and working to build acceptance in general, the response instead was a divisive "its not us, its them; we're not like them".<br />
<br />
Regardless, the overall point being made by the community is a valid one. While there might be an association between autism and spontaneous, unintentional aggression, whether it be towards others or the person themselves, there is no known relationship between autism and sitting down and planning to commit a violent act.<br />
<br />
But then there was the threat of planned violence posted on Wrong Planet and it made me wonder. Maybe there isn't a direct link between autism and planned violence but I have to wonder whether there might be a link between social isolation and the willingness to commit horrific acts. <br />
<br />
If that is true then that suggests that society as a whole needs to do a far better job at helping people with all sorts of disabilities feel connected and suggests that ideologies that do nothing but divide people rather than bring them together are far more harmful than I thought.<br />
<br />
It will be, uhm, interesting (for lack of a better word) when and if we ever get a clearer picture of exactly what happened in Newtown and why Adam Lanza decided to do what he did. I suspect that we have not heard the last of autism's involvement in the incident and, if little bits and pieces of what I have read are true, well, lets just say that won't be pretty. <br />
<br />
At the very least, this incident should force this country to have a serious discussion on how people with mental health issues are treated and, just as importantly, on better gun control. There is absolutely no reason why someone like Lanza should have had access to the arsenal that he took with him and, without a doubt, the death toll would have been much lower if he weren't so heavily armed.<br />
<br />
Well, this has been a little too much reality for me, I think I need to go stick my head in the ground again and pretend that none of this ever happened. I just hope that if autism gets dragged back into the mess that the community responds better than it did the first time. <br />
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M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com4tag:blogger.com,1999:blog-1892134081049774386.post-4556419600968360252012-11-21T11:15:00.000-05:002012-11-21T11:15:44.147-05:00A Genetic Epidemic of Down Syndrome?Over at Left Brian Right Brian, Sullivan (aka Matt Carey) is <a href="http://leftbrainrightbrain.co.uk/2012/11/20/there-cant-be-a-genetic-epidemic/" rel="nofollow">attempting</a> to make an argument that there can be a genetic epidemic. He says -<br />
<blockquote class="tr_bq">
It’s a phrase that is heard a great deal in online discussions about autism: there are no genetic epidemics. Genes don’t change quickly enough for a genetic condition to see an increased prevalence over a single generation, right? Well, yes and no.</blockquote>
Before going on to suggest Down Syndrome might be a model for how a genetic epidemic might work. But while it is true that Down Syndrome is caused by an underlying genetic mutation and that the number of people with Downs is increasing, it does not classify as a "genetic epidemic".<br />
<br />
The main reason is that for the most part<sup>1</sup> Down Syndrome is not an inherited condition. A child does not have Downs because their parents passed along any sort of mutation. Downs is caused by a mistake in cell division during the development of the egg, sperm, or embryo. So while there is a genetic mutation responsible for the condition, the mutation is caused by some non-genetic factor.<br />
<br />
Down syndrome (again, for the most part) doesn't run in families. Having one child with Downs only slightly increases your chance of having a second child with Downs.<br />
<br />
And a person with Downs in unlikely to pass the condition along to another generation because most people with Downs have problems with fertility. Men with Downs are thought to be sterile and women are only fertile about a third of the time. Although, if a person with Downs has a child, there is a significant chance that their child will inherit their condition.<br />
<br />
So while Downs might be caused by genetic mutations (aka is "genetic"), it is not a "genetic epidemic" because the increasing number of people with Downs is not due to the mutations becoming more common in the gene pool. What is causing the increasing number of people with Downs is due to a few social changes.<br />
<br />
First, there is an ongoing trend for women to have children later in life and maternal age is a demonstrated risk factor for Downs (although, as a side note, I have never read a good explanation as to why exactly that is the case). The <a href="http://www.aafp.org/afp/2000/0815/p837.html">risk</a> of having a child with Downs increases with age, going from 1 in 1,600 when a mother is twenty to 1 in 1,000 at thirty and 1 in 90 by forty. <br />
<br />
Second, people with Downs are surviving longer. Down syndrome comes with a variety of related health problems and these problems can shorten a persons life. About eighty years ago, people with Downs often didn't survive past their tenth birthday. Over time that age has gradually increased so that today people with Downs can expect to live to 50 and beyond.<br />
<br />
Finally, people today seem to be more willing to have a child with Downs. Abortions of children with Downs is a contentious subject, but as life expectancy and quality of life for a person with Downs has been improving, there seem to be fewer abortions.<br />
<br />
These three factors can explain the modest increase in the number of people with Downs that has been seen over the past several decades. <br />
<br />
So, back to Sullivan's original argument, there is no "genetic epidemic" of Down Syndrome. There isn't really even an "epidemic" of Down Syndrome - the growth has been modest and is what would be expected given the social trends listed above.<br />
<br />
More importantly, there aren't that many similarities between Downs and autism -<br />
<br />
In autism, there is no single mutation that can account for more than a small fraction of cases and yet having one child with autism does significantly increase the risks of having another child with autism. Down Syndrome centers on a mutation on one chromosome while autism has been tentatively linked to many places across our genes. So, from the little we know about the genetics of autism, the underlying genetics of autism and Down Syndrome are quite different.<br />
<br />
Autism does not automatically come with medical conditions that shorten life expectancy. And there is no prenatal test for autism<sup>2</sup> and so there are no widespread abortion trend that is reversing.<br />
<br />
Autism is growing much, much faster than Down Syndrome. Over a <a href="http://pediatrics.aappublications.org/content/124/6/1565.long">twenty four year period</a> (1979 to 2003), the number of people born with Down Syndrome grew by 31.1%. Over the same time period, the number of case of autism grew from about 2-4 per 10,000 to 66 per 10,000 or about 1500%<sup>3</sup>. If you take a more conservative time period (2000 to 2008), autism has grown about 160%. Anyway you slice it, autism is growing significantly faster than Downs.<br />
<br />
The only real link between Downs and autism is parental age, and that is a nebulous one at best. Some studies of autism involving parental age show a small relationship with maternal age but not paternal age, some show a relationship with paternal age and not maternal, some show a relationship with both, and some show no relationship to either. <br />
<br />
At the present time, the best that we can say is that there might be some relationship between maternal or paternal age and risk of autism. Compare that to Down Syndrome where there is a clear link between maternal age and the risk of having a child with Downs. <br />
<br />
So, not only is Sullivan wrong to suggest that there is a "genetic epidemic" of Downs Syndrome, he is wrong to suggest that there is any epidemic of Downs at all or that this tells us anything about what is going on with autism. <br />
<br />
1. There are actually three different known types or styles of genetic mutations that can cause Down Syndrome. The most common one, trisomy 21, accounts for more than 90 percent of cases and is almost never inherited. Another form, which is almost not normally inherited, involves a mutation of chromosome 21 where only some of the cells have the mutation and others don't. The final form, called translocation Down Syndrome, can be passed from carrier parents to children. However, only about 4% of Downs cases are these type and only about half of these cases involve inheritance. <a href="http://www.mayoclinic.com/health/down-syndrome/DS00182/DSECTION=causes">Source</a><br />
<br />
2. Well, technically, there are prenatal tests for some known genetic forms of autism, such as Rett Syndrome and Fragile X.<br />
<br />
3. A large part of the growth in autism from the 1980 to 2000 is probably due to the condition being added t the DSM III and then its changes in the DSM IV.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com1tag:blogger.com,1999:blog-1892134081049774386.post-67580831170616487632012-11-17T10:58:00.001-05:002012-11-17T10:58:52.856-05:00Diabetes More Common in USIn health news that is not related to autism, the CDC has published a <a href="http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6145a4.htm?s_cid=mm6145a4_w">report</a> that the prevalence of diabetes in the United States has risen sharply over the past fifteen years. This report estimates that 8.2% of the adult population suffers from diabetes in 2010, up from 4.5% percent in 1995.<br />
<br />
Yes, you read that figure correctly - roughly 1 out of every 12 adults in the US now has diabetes.<br />
<br />
The CDC gives a few possible reasons for the increase -<br />
<ol>
<li>Improved survival of people with diabetes. Deaths among US adults with diabetes declined substantially over the same time period.</li>
<li>An actual increase in the number of cases. </li>
<li>Changes in diagnostic criteria, demographics, and lifestyle.</li>
<li>Enhanced detection.</li>
</ol>
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The report also notes that the increase of diabetes coincides with the increase in obesity across the United States, although it does not draw any firm conclusions from the association.</div>
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And just to drive the point home, here is a chart of how the prevalence of diabetes has changes over the past 15 years. I think the trend is rather clear, don't you?<br />
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M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com2tag:blogger.com,1999:blog-1892134081049774386.post-74007325166601601922012-11-15T14:30:00.000-05:002012-11-15T14:30:02.749-05:00Study : Fecundity of People With Mental DisordersAccording to a recent study, people who have schizophrenia, autism, and anorexia nervosa have fewer children than the general population. This isn't a particularly happy topic or one that I enjoy dwelling on, but it is a rather important topic to think about when trying to understand whether autism is becoming more common.<br />
<br />
One the one hand you have the idea that autism is strongly genetic and runs in families but on the other you have the inconvenient fact that having autism greatly reduces your chances of having children. You would think that those ideas aren't compatible, that the families who have a higher than normal number of members with autism would not keep going generation after generation as they would be "strongly selected against".<br />
<br />
Of course the issue isn't really that simple as that. There are many other factors involved that might be contributing to these families staying around such as extremely mild symptoms of autism, recessive traits, the relative rarity of autism, and the like that could explain both facts. <br />
<br />
But still, even if both ideas are true and autism is strongly genetic and "strongly selected against", you would, at best, expect it to stay about the same prevalence. It would look more like schizophrenia which is "genetic" (and environmental), runs in families, and is "strongly selected against" and still manages to stay at a relatively constant 1% of the population.<br />
<br />
Yet with autism we have three ideas that really can't go together - that autism is strongly genetic, that autism makes you a lot less likely to have children, and that the number of cases of autism is growing fairly rapidly. Although to be fair, all three of these statements are gross oversimplifications of the complex realities of autism.<br />
<br />
Just food for thought. The abstract of the study is below.<br />
<br />
<b><u>Fecundity of Patients With Schizophrenia, Autism, Bipolar Disorder, Depression, Anorexia Nervosa, or Substance Abuse vs Their Unaffected Siblings</u></b><br />
<b><br /></b>
<b>Context</b> It is unknown how genetic variants conferring liability to psychiatric disorders survive in the population despite strong negative selection. However, this is key to understanding their etiology and designing studies to identify risk variants.<br />
<br />
<b>Objectives</b> To examine the reproductive fitness of patients with schizophrenia and other psychiatric disorders vs their unaffected siblings and to evaluate the level of selection on causal genetic variants.<br />
<br />
<b>Design</b> We measured the fecundity of patients with schizophrenia, autism, bipolar disorder, depression, anorexia nervosa, or substance abuse and their unaffected siblings compared with the general population.<br />
<br />
<b>Setting</b> Population databases in Sweden, including the Multi-Generation Register and the Swedish Hospital Discharge Register.<br />
<br />
<b>Participants</b> In total, 2.3 million individuals among the 1950 to 1970 birth cohort in Sweden.<br />
<br />
<b>Main Outcome Measures</b> Fertility ratio (FR), reflecting the mean number of children compared with that of the general population, accounting for age, sex, family size, and affected status.<br />
<br />
<b>Results</b> Except for women with depression, affected patients had significantly fewer children (FR range for those with psychiatric disorder, 0.23-0.93; P < 10-10). This reduction was consistently greater among men than women, suggesting that male fitness was particularly sensitive. Although sisters of patients with schizophrenia and bipolar disorder had increased fecundity (FR range, 1.02-1.03; P < .01), this was too small on its own to counterbalance the reduced fitness of affected patients. Brothers of patients with schizophrenia and autism showed reduced fecundity (FR range, 0.94-0.97; P < .001). Siblings of patients with depression and substance abuse had significantly increased fecundity (FR range, 1.01-1.05; P < 10-10). In the case of depression, this more than compensated for the lower fecundity of affected individuals.<br />
<br />
<b>Conclusions</b> Our results suggest that strong selection exists against schizophrenia, autism, and anorexia nervosa and that these variants may be maintained by new mutations or an as-yet unknown mechanism. Bipolar disorder did not seem to be under strong negative selection. Vulnerability to depression, and perhaps substance abuse, may be preserved by balancing selection, suggesting the involvement of common genetic variants in ways that depend on other genes and on environment.<br />
<br />
<br />
<b>References</b><br />
Power RA, Kyaga S, Uher R, Maccabe JH, Långström N, Landen M, McGuffin P, Lewis CM, Lichtenstein P, Svensson AC. Fecundity of Patients With Schizophrenia, Autism, Bipolar Disorder, Depression, Anorexia Nervosa, or Substance Abuse vs Their Unaffected Siblings. Arch Gen Psychiatry. 2012 Nov 12:1-8. doi: <a href="http://dx.doi.org/10.1001/jamapsychiatry.2013.268">10.1001/jamapsychiatry.2013.268</a>. [Epub ahead of print] PubMed PMID: <a href="http://www.ncbi.nlm.nih.gov/pubmed/23147713">23147713</a><br />
M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com3tag:blogger.com,1999:blog-1892134081049774386.post-11478826780144893692012-10-31T00:02:00.000-04:002013-01-27T08:32:26.731-05:00What's Wrong With Diagnosing Yourself with Autism?Self-diagnosis is the process of identifying a medical condition in oneself. You look at signs and symptoms that you have and try to match them to a medical condition. This process is prone to error under the best circumstances and potentially dangerous under worse ones.<br />
<br />
In the autism community, there are some number of adults who have self-diagnosed themselves with a form autism. They may refer to it using other phrasing, such as ASAN's "self-identif[ied] with the Autistic community", but it is really the same thing. These people have looked at themselves and decided that, based on their behaviors, they have some form of autism.<br />
<br />
The people will typically say that the self-diagnosis was a wonderful thing for them or how it <a href="http://autismjabberwocky.blogspot.com/2009/02/congratulations-youve-got-autism.html">changed their life</a>. And while, at first glance, it might seem like there is nothing wrong with this practice, it has been my experience that self-diagnosis is almost never a good thing for anyone involved.<br />
<br />
In my opinion, if a person thinks that there is something wrong with them, they should not try and guess what it is themselves. They should instead go talk with an unbiased professional who will be able be able to help them. This is true for strictly physical problems and is doubly true for profound mental problems such as autism.<br />
<br />
There are many reasons for this as a general statement, but here are some specific ones for autism.<br />
<br />
1. Everybody has strengths and weaknesses. Everybody has things that they are good at and other things that they struggle with - this is "normal" and expected. So just because you have problems or struggle in some areas does not mean that you have a mental disorder. Mental disorders are defined by their extreme behaviors - behaviors that are so far out of the realm of what is typically seen that they cause problems. <br />
<br />
Autism is (currently) defined by profound impairments in three areas - communication, socialization, and repetitive/restricted interests and activities - that must appear in early childhood and that must act together to impair every day life. <br />
<br />
For example, the ability to focus on a subject and become extremely knowledgeable is well within what is considered "normal". You don't have autism (or a "trait" of autism) simply because you find a subject very interesting and can spend a lot of time learning about it. It is only when the ability to focus turns into a constant fixation or obsession that you go from what is "normal" to something that isn't.<br />
<br />
So, to be perfectly blunt, just because you are don't relate well to others and have some strong interests does not mean you have autism. Along the same lines, just because a person is a "geek" or in some other technical profession doesn't mean that they are automatically on the spectrum somewhere. <br />
<br />
It means that you have areas that you need to work on and improve in, just like everybody else.<br />
<br />
2. It is hard enough for a "typical" person to objectively and accurately analyze and understand their own behaviors. If you do actually have a mental disorder then that means that your ability to understand and objectively analyze your own behaviors will likely be impaired. This is true not just in autism but most of the other major mental disorders such as ADD, schizophrenia, depression, and addiction, to name just a few.<br />
<br />
To put that another way, if you are relying on your own opinions and observations about your behaviors and you do actually have a disorder then you will most likely be getting it wrong.<br />
<br />
3. There are very few "objective" measures of autism and all of the reliable ones require a trained professional. But there are some rather crappy ones that are promoted online by various that will likely give you the wrong idea.<br />
<br />
Probably the most well know and most abused of these is the <a href="http://autismjabberwocky.blogspot.com/2010/10/think-you-have-autism-dont-take-quiz.html">Autism Quotient</a>. The AQ is a meant to be used as a screening test in an appropriate setting with appropriate supports in place. It is not meant as a test to see if you have autism. Even if you get an extremely high score that will only raise your chances of having autism to like 1 in 10. And the AQ <a href="http://autismjabberwocky.blogspot.com/2010/11/hazards-of-self-diagnosis.html">cannot tell the difference</a> between autism and other conditions such as schizophrenia.<br />
<br />
I cannot count the number of times I have run across people who have decided that they have autism based on their own observations of their behaviors and their score on the AQ. Some of these people might well have a form of autism but the numbers suggest that most would not.<br />
<br />
4. Even if you do have some profound problems in the three core areas of autism, that does not mean that you have autism. There are several other conditions, such as ADD, <a href="http://autismjabberwocky.blogspot.com/2010/11/hazards-of-self-diagnosis.html">schizophrenia</a> and <a href="http://www.ncbi.nlm.nih.gov/pubmed/23084795">OCD</a>, that overlap with autism and it can be difficult to tell them apart. You have to consider the complete picture of all of the behaviors that a person has, when those behaviors appeared, as well as what behaviors are missing to be able to tell them apart.<br />
<br />
This is why an objective, unbiased professional is critical to the process. They should know not only what the different conditions look like and what the signs of each are but also how to tell them apart. They will know the little things like an AQ isn't a diagnosis and that a high score could mean schizophrenia or autism.<br />
<br />
Accurately determining what (if any) condition you have is absolutely critical for the next point.<br />
<br />
5. You have to make sure that any treatments are appropriate for your condition. If you taken it upon yourself to decide that you have a condition then you may use treatments that are completely inappropriate for your actual condition. More importantly, if you have decided on the wrong condition, you could miss out on treatments that could really make a difference in your life.<br />
<br />
If you have decided that you have a form of autism but also decided that you don't need any form of treatment, then I would ask why you think you have a disorder in the first place. The point of a medical label is to identify a condition so that you know what you are dealing with and how to treat it. A medical label is not an identity.<br />
<br />
(And no, "the rest of the world needs to just accept who I am" is not a treatment. Not that acceptance itself is bad or unneeded, but it will rarely be enough to give you back the ability to function in the world. More on this in a bit.)<br />
<br />
6. You have to ask yourself what a self-diagnosis of autism will actually do for you. While at first glance it might seem like the label can help you make sense of your life, it really can't. The autism label might provide a plausible sounding rationale for your behaviors but the label alone doesn't necessarily help you deal with or improve those behaviors. For that you need an objective person who will be able to consider all aspects of the behaviors and help you arrive at an appropriate strategy.<br />
<br />
And if you are just looking to use the label of autism as an ongoing justification for your actions and are refusing to change yourself in any way (i.e. you are in the "autism is just a difference camp"), then I have two little words for you - grow up. You are supposed to change and adapt your behaviors in response to your environment, even when you would rather not and it is uncomfortable to do so. <a href="http://autismjabberwocky.blogspot.com/2009/06/autism-is-not-excuse-for-behaving-badly.html">Autism is not an excuse for behaving badly</a>.<br />
<br />
Just to be perfectly clear here, if you are disabled by a mental disorder then you are entitled to the same rights that everybody else is. You are not less of a person simply because you have a disability. You have the right to expect that others will still treat you as an equal and you have the right to expect that accommodations will be made to help you function better. <br />
<br />
But if you have the ability to change and improve yourself but choose not to because you think that you are defined by a medical label then you really do have a problem. And the problem isn't that you have autism.<br />
<br />
Which leads to the last and very unfortunate problem.<br />
<br />
7. There are certainly many people in the world who do have autism, who struggle because of it, and who are able to speak about it publicly. These people provide an invaluable service because they enable the rest of us to better understand what it is like to have autism. I applaud their courage to speak out about their condition and am extremely grateful for the insight they provide.<br />
<br />
But then there are a number of people who have self-diagnosed with autism and then rush to tell the word "what it is like" to have autism. These people often spread inaccurate information about what autism is and what effects it can have on a person. These people cause direct and lasting harm to people who actually do struggle with autism by giving a false impression of what autism is and by drawing attention away from people who are actually disabled by their autism and truly do need the help.<br />
<br />
These people often encourage other people to self-diagnosis or "look into it" for themselves. They are often the people who use autism as a justification for their actions and claim that it is the rest of the world who have a problem and not them. These people certainly do have issues but, in my opinion, that problem is rarely autism.<br />
<br />
So, for these reasons and quite a few others, if you think you have a serious mental disorder such as autism, please don't try and diagnose yourself. Instead go get the help you need. There is no shame is trying to get help when you need it and you have everything to lose and very little to gain from diagnosing yourself.<br />
<br />
P.S. The practice of diagnosis shopping, i.e. going to multiple professionals until you find one that agrees with your self-diagnosis, is almost as bad as diagnosing yourself in the first place. There is certainly a time when a second (or third or fourth) opinion is certainly a good idea but there is a clear difference between trying to find a professional who can help and going to multiple professional until you find one that agrees with you.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com29tag:blogger.com,1999:blog-1892134081049774386.post-38683146601522396852012-10-22T13:24:00.002-04:002012-10-22T13:24:31.913-04:00Temple Grandin: Autism Is Not My IdentityTemple Grandin on autism as an identity -<br />
<br />
<blockquote class="tr_bq">
I am a scientist and college professor first and a person with autism second. Autism is an important part of me, and I do not want to change, but my career is my identity, not autism.</blockquote>
<blockquote class="tr_bq">
I get concerned when young kids come up to me and all they want to talk about is “their autism.” I would rather talk about their interest in animals, science, or history. They are becoming their label.</blockquote>
<br />
Go read the <a href="http://www.takepart.com/article/2012/10/15/temple-grandin-autism-is-not-my-identity">full article</a>, there are many good points in it.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com1tag:blogger.com,1999:blog-1892134081049774386.post-86644989652904015382012-10-20T18:15:00.000-04:002012-10-20T18:15:06.016-04:00The Sum of All GeneticsA interesting paper was published a few days back on the genetics of autism that suggested that the genetic component of autism is made up of not one or two large mutations but rather many small mutations that add together to increase risk.<br />
<br />
As the paper put it -<br />
<blockquote class="tr_bq">
For simplex families, who have only a single affected individual in multiple generations, approximately 40% of liability traces to additive effects whereas this narrow-sense heritability exceeds 60% for ASD individuals from multiplex families.</blockquote>
Or to put that another way, you can only blame genetic mutations for roughly half the risk of autism. This idea isn't necessarily new but it is the first time that I have seen it presented so openly in a paper with the names of so many prominent autism researchers attached.<br />
<br />
I'm not going to dig into the methods used in the paper because, quite frankly, I have no real understanding of the methods used to arrive at the result and so I don't have an opinion on whether the results fit the data. If you want a good summary of the results in the paper, I suggest you read the write up over at <a href="http://questioning-answers.blogspot.com/2012/10/autism-sum-of-its-snps.html">Questioning Answers</a>.<br />
<br />
What I am going to point out is the excellent background section at the start of the paper. The <a href="http://www.molecularautism.com/content/pdf/2040-2392-3-9.pdf">paper</a> is open access, so I if you are interested in the genetic of autism I suggest you read at least that section. I also wanted to point out two little bits from this section -<br />
<blockquote class="tr_bq">
Beliefs about the genetic architecture of autism spectrum disorders (ASD) have changed dramatically over the past few decades. Early twin studies produced heritability estimates approaching 90% and, while no specific risk loci were known at the time, it was believed that liability was conferred by a handful of genes of large effect. Later, data on the distribution of ASD within families, together with results from linkage analyses, were interpreted to mean that liability arose from many genes. Recent work has definitively demonstrated the substantial contribution of de novo variation. Indeed multiple studies of rare single nucleotide and copy number variants (CNVs) have suggested that 15% or more of liability traces to de novo mutation, effects that are genetic but not inherited.</blockquote>
and<br />
<blockquote class="tr_bq">
[D]espite a near-consensus that common and transmitted variation must confer liability, multiple genome-wide association studies have so far not revealed replicable common polymorphisms associated with ASD, and studies of rare structural and sequence mutations have largely failed to account for the anticipated risk associated with transmitted variation.</blockquote>
I may be reading too much into these statements, but it almost seems like the paper is admitting that the assumption that autism is primarily an inherited genetic disorder is flawed. Of course, the data in the paper tries to save the idea by suggesting that the genetic risk for autism comes from tens, hundreds, or thousands of small inherited mutations which, when acting together, give a greater risk for autism.<br />
<br />
And who knows, that idea may actually be true. Maybe the genetic side of autism does in fact come from many small mutations acting together. But here is the thing about science - it is all about the evidence. An estimate from applying some fancy algorithm to an already over analyzed genetic data set doesn't tell us anything new.<br />
<br />
Despite a "near-consensus" that there have to be common genetic mutations that are passed from parent to child that increase the risk of autism, the fact is that after years upon years of looking no one has found them. All that has been found are some relatively rare inherited conditions and a bunch of non-inherited mutations that, when taken together, make up the minority of cases of autism.<br />
<br />
In fact, I would say that the lack of findings despite the efforts to date make a pretty convincing case that such common mutations do not exist, the evidence of twin and other studies notwithstanding. Maybe it is time to start looking in more promising areas such as epigenetics or the biology of autism?<br />
<br />
<b>References</b><br />
<br />
Klei L, Sanders SJ, Murtha MT, Hus V, Lowe JK, Willsey AJ, Moreno-De-Luca D, Yu TW, Fombonne E, Geschwind D, Grice DE, Ledbetter DH, Lord C, Mane SM, Lese Martin C, Martin DM, Morrow EM, Walsh CA, Melhem NM, Chaste P, Sutcliffe JS, State MW, Cook EH Jr, Roeder K, Devlin B. Common genetic variants, acting additively, are a major source of risk for autism. Mol Autism. 2012 Oct 15;3(1):9. [Epub ahead of print] PubMed PMID: <a href="http://www.ncbi.nlm.nih.gov/pubmed/23067556">23067556</a> DOI : <a href="http://dx.doi.org/10.1186/2040-2392-3-9">10.1186/2040-2392-3-9</a><br />
<br />M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com2tag:blogger.com,1999:blog-1892134081049774386.post-20755856622581604742012-10-18T21:52:00.000-04:002012-10-18T21:52:42.871-04:00Genetics, Twins, and AutismI think I may have mentioned this once or twice in the past but, at the risk of repeating myself, let me say it again. I am somewhat skeptical about the idea that autism is a primarily genetic disorder consisting of hundreds of extremely rare mutations. <br />
<br />
I understand the evidence that suggests that autism is "genetic". I understand that twin studies suggest that something about being a twin greatly increases the risk of autism and that the risks are greater for identical than fraternal twins. But what I don't understand is why the presumption is that genetics is the cause of the greater risk. I don't understand why the other things that twins have in common - such as a shared prenatal and early childhood environments - are often ignored or overlooked.<br />
<br />
For example, the existing evidence suggests that a fraternal twin has a greater risk of autism if their twin has autism than other, non-twin siblings do. Fraternal twins are no closer genetically than other other siblings so the increased risk over non-twin siblings has to come from shared environmental factors.<br />
<br />
And then there is the little fact that the genetics of even identical twins isn't as straight forward as you might think. Yes identical twins start off with identical genetic material at the moment of conception, but after that point things can get a little murky.<br />
<br />
As I think I have mentioned in the past, my identical twin daughters who both have autism each have their own set distinct set of mutations. Under the standard assumption that identical twins are always genetically identical that shouldn't happen. But clearly someone forgot to tell them that they shouldn't be like that.<br />
<br />
Just because identical twins start out with the same genetic code when they split from each other a few days after conception doesn't mean they will still be identical when they are born. But if my little anecdote doesn't make you say hmm, then consider the following abstract of a study that was just published -<br />
<br />
<b><u>Monozygotic twins discordant for submicroscopic chromosomal anomalies in 2p25.3 region detected by array CGH.</u></b><br />
<blockquote class="tr_bq">
Although discordant phenotypes in monozygotic twins with developmental disorder are not an exception, underlying genetic discordance is rarely reported. Here, we report on the clinical and cytogenetic details of 4-year-old female monozygotic twins with discordant phenotypes. Twin 1 exhibited global developmental delay, overweight and hyperactivity. Twin 2 had an autistic spectrum disorder. Molecular karyotyping in twin 1 identified a 2p25.3 deletion, further confirmed by FISH analysis on leukocytes. Interestingly, array-CGH was normal in twin 2 but FISH analysis using the same probe as twin 1 showed mosaicism with 1/3 of cells with a 2p25.3 deletion, 1/3 of cells with a 2p25.3 duplication, and 1/3 of normal cells. Genotyping with microsatellite markers confirmed the monozygosity of the twins. We propose that the chromosome imbalance may be due to a mitotic non-allelic recombination occurring during blastomeric divisions of a normal zygote. Such event will result in three distinct cell populations, whose proportion in each embryo formed after separation from the zygote may differ, leading to discordant chromosomal anomalies between twins. We also discuss that the MYTL1L and the SNTG2 genes within the reported region could probably relate to the phenotypic discordance of the monozygotic twins.</blockquote>
Makes perfect sense, right? <br />
<br />
OK, the text is a little bit dense, so lets break it down a little bit. In this study there is a pair of four year old identical twin girls who have different but related developmental disorders -<br />
<br />
Twin 1 -<br />
<ul>
<li>has global developmental delay (intellectual disability)</li>
<li>is overweight</li>
<li>is hyperactive</li>
<li>has a deletion at 2.25p3</li>
</ul>
Twin 2 -<br />
<ul>
<li>has autism</li>
<li>did not have an overall mutation at 2.25p3</li>
<li>but did show signs of <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002294/">mosaicism</a>, meaning that roughly -</li>
<ul>
<li>1/3 of her cells had a 2.25p3 deletion</li>
<li>1/3 of her cells had a 2.25p3 duplication</li>
<li>1/3 of her cells had a normal 2.25p3 gene</li>
</ul>
</ul>
If that last bit about one twin having a deletion at 2p25.3 while the other has a partial deletion and a partial duplication of the same gene leaves you confused, you aren't alone. I had to read the abstract a few times and look up what some of the terms meant before it started making sense to me.<br />
<br />
I haven't read the full text of the study but there are a few things that jumped out at me.<br />
<br />
First, genetics - even in the case of identical twins - is not simple. Most people hear the word "identical" and jump to the conclusion that identical means exactly the same. But as this abstract and other results have shown, identical twins aren't exactly the same. You cannot assume that because one twin has a certain genetic mutation that her twin will have the same.<br />
<br />
Second, just because you can point to developmental differences between identical twins and can find a mutation in one twin does not mean that the mutation is automatically the cause. There has to be a mechanism related to the mutation that could cause the differences.<br />
<br />
Third, when you find differences in the genetics of identical twins, the fact that there are differences might be more important than what the actual differences are. Any mutation that is not shared has to happen after conception but before the fetus gets large enough that a mutation wouldn't be able to spread to the entire body. <br />
<br />
Since these mutations cannot be inherited there has to be something in the prenatal environment that causes them (and please don't say random chance). It seems, at least to me, that any factor that is strong enough to cause permanent genetic change would also be able to play havoc with the delicate developmental process of the fetus.<br />
<br />
Finally, you have to look at the overall picture of the twins to see if the mutation is important. In the study the twins both have different yet related developmental disorders - global developmental delay and autism. Since these conditions are so closely related and since it can be difficult to tell the difference between the two (especially in four year olds), I think the fact that both twins are both developmentally delayed is more important than the subtle differences between the two. <br />
<br />
The bottom line here is that presumption that autism is largely genetic rests heavily on twin studies but the genetics of twins isn't as straight forward as you would think. When you add in the facts that there isn't an "autism gene" or even a small set of "autism genes" but rather hundreds of mutations that might each account for a very small number of cases and that even identical twins don't always share these rare yet presumed causal mutations, the genetic presumption starts to look a little weak.<br />
<br />
<b>References</b><br />
<b><br /></b>
Rio M, Royer G, Gobin S, de Blois M, Ozilou C, Bernheim A, Nizon M, Munnich A, Bonnefont JP, Romana S, Vekemans M, Malan CT. Monozygotic twins discordant for submicroscopic chromosomal anomalies in 2p25.3 region detected by array CGH. Clin Genet. 2012 Oct 15. doi: <a href="http://dx.doi.org/10.1111/cge.12036">10.1111/cge.12036</a>. [Epub ahead of print] PubMed PMID: <a href="http://www.ncbi.nlm.nih.gov/pubmed/23061379">23061379</a>.<br />
<br />M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com2tag:blogger.com,1999:blog-1892134081049774386.post-3177588277415219422012-10-11T12:15:00.002-04:002012-10-11T12:15:20.127-04:00State of Pennsylvania Backs Down on Autism Income TaxOn Friday of last week, the State of Pennsylvania backed away from from implementing its controversial autism copayment requirement for Medical Assistance. In a released statement, Department of Public Welfare Secretary Gary D. Alexander said -<br />
<blockquote class="tr_bq">
Oh shit, that didn't go over well.</blockquote>
Ahem, seriously, what <a href="http://listserv.dpw.state.pa.us/scripts/wa.exe?A2=ind12&L=NEWS-RELEASES&P=69756">he said</a> was -<br />
<blockquote class="tr_bq">
The department has always preferred the option of applying a premium to this program and will be working with stakeholders who have come to us in support of a premium as opposed to the co-payment. Therefore, we have decided to delay the co-payment initiative, and families will not owe a co-payment for any services until further notice.<br />
<br />
Stakeholders have clearly indicated to the department an understanding of the need for families to contribute to this program. With the delay, there is an opportunity to work with stakeholders to continue to pursue the premium from the federal Centers for Medicare and Medicaid Services. We look forward to working with them in achieving this shared goal.<br />
<br />
Once a decision is reached, we will immediately inform any affected families.</blockquote>
Even though there is a bunch of nonsense in there about "stakeholders" <strike>begging</strike> asking to pay a premium instead of a copayment, the message is clear. The copayment that would have caused economic hardship and potentially a loss of services for many families in Pennsylvania whose children have autism was stopped in its tracks, at least for now.<br />
<br />
If you are living outside of the State of Pennsylvania or aren't a part of the informal parental networks in the state, you might wonder why the proposed copayments only lasted for about two short weeks before being yanked. <br />
<br />
The answer is simple - the measure was stopped dead by the combined voices of thousands of families across the state. Once the parents, families, and professionals who would have been impacted by the copayment became of aware of what was going on they mobilized and attacked the issue head on. There was a march on the capital, a bill introduced in the PA House, calls to elected officials, and organized meetings about how to tackle the problems.<br />
<br />
I think once the State of Pennsylvania figured out how seriously the autism community was taking this issue they decided it wasn't worth the fight. It probably didn't hurt that elections are literally right around the corner either.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com0tag:blogger.com,1999:blog-1892134081049774386.post-17452688414837472422012-09-30T12:37:00.000-04:002012-09-30T12:37:10.308-04:00State of Pennsylvania Imposes 5% Autism Income TaxFamilies who have children with autism and live in the state of Pennsylvania have had a pretty good deal for a while now. That's because Pennsylvania is one of the few states that has provided free medical coverage called Medical Assistance (MA) to children with severe disabilities, such as autism, regardless of parental income. The really nice thing about MA is that it not only covered normal medical expenses but also paid for evidence-based autism specific treatments such as speech therapy, occupational therapy, and (most importantly) ABA.<br />
<br />
The MA program isn't perfect by any means. It involves a lot of paper work, a lot of red tape, and the only real way to navigate the system is by talking to families that have been in the system longer. And when it comes to the autism specific therapies, another related group gets involved in managing your child's treatment down to having to approve each goal and method on your child's treatment plan. So it isn't like MA is some sort of all you can eat buffet - each and every autism specific treatment has to be medically necessary, completely supported by the available evidence, and you have to be a strong advocate for your child's needs.<br />
<br />
Then, each and every year, you have to reapply for the benefits and most years you have to provide a new medical evaluation proving that your child still has autism. Even though managed care side requires periodic evaluations and treatment plans and is almost involved in the day to day treatment of your child. So once a year you have to spend several weeks trying to get a hold of the person assigned to your case (who changes constantly and is virtually impossible to get a hold of) and making sure that they have all of the paper work they need, haven't misplaced anything, and will process it all before the date when the services will be cut. <br />
<br />
Or, in other words, the MA program is exactly like most other bureaucratic government run programs. But by and large the system generally works. It can be a little bit of a pain to navigate, but once you learn what you need to do it works decently well. After dotting each i and crossing each t, jumping through multiple hoops, and standing on your head while rubbing your stomach, you can access some rather decent services for your child and the only cost is your sanity.<br />
<br />
Seriously, I don't have any major complaints with the system besides the bureaucracy and I am extremely grateful that it exists. We would not have been able to afford even a fraction of the life-changing therapy that my children have received over the years without this system. And just to be perfectly clear here, we have good private health insurance that covers a lot of my children's medical needs and I make a decent living. So it isn't like we simply lack the means to provide these therapies but rather that these therapies are so expensive (40k+ per year per child) that even fairly well off families have no chance. <br />
<br />
But now, in an effort to save a couple of bucks, the State of Pennsylvania has decided to impose a copayment on certain services provided by MA to families that earn more than 200% of the federal poverty level. This copayment will be up to 20% of the cost of the services and capped at 5% of a families gross monthly income. Since the base price of autism specific services is so expensive, all but the wealthiest families are going to hit that 5% cap. <br />
<br />
At first glance this copayment might seem perfectly fair. After all, no one really has the right to expect certain services from the government and most families whose children have autism receive far more benefits from the state than they pay in taxes. But in reality what this copayment is going to do is mean that many children with autism are going to lose services because many families are not going to be able to afford the copayments.<br />
<br />
Lets consider a few examples. <br />
<br />
A single mother who has one child with autism will be hit with the copayment if she makes more than 30,260 per year. At that level of income, she would be expected to pay about 1,500 per year in copayments or about 120 per month. A family of five that earns more than 54,020 would be expected to pay 2,700 per year or about 225 per month. <br />
<br />
I don't think I need to explain to other autism families about the financial burden that having a child with autism can cause. Even if basic medical costs and the core autism specific treatments are covered (as is currently the case in PA), there are still very substantial out of pocket expenses that directly relate to autism each and every month. <br />
<br />
And that doesn't even begin to take into account the financial opportunities that are lost to autism. There are many families where one of the parents has to forgo working to take care of the children and there are many parents who are unable to take advantage of professional opportunities because of the limits that autism imposes.<br />
<br />
I don't want to sound like I am complaining but this is reality of having children with autism. I wouldn't trade my children for anything (except maybe versions of them that could talk and slept at night) but providing appropriate treatments and supports is very expensive to begin with.<br />
<br />
So when the State of Pennsylvania comes in and tells me that they want 5% of my annual gross income because that's my "fair share", I just have to laugh. My family, like most other autism families that I know, is already spending more than we can afford in an effort to give our children the best possible future. <br />
<br />
No, what this new copayment is is basically a new income tax on families that can't really afford it. To put this new tax into perspective, the existing state income tax stands at 3.07%. This new income tax is going to more than double the effective state income tax, raising it to 8.07%.<br />
<br />
If this new charge was really meant to be a copayment rather than a new tax then, it should work like other copayments work. If any other insurance company came in and charged a premium for the plan and then, when asked about copayments, said "it depends, how much do you make" then they would likely loose most of their customers.<br />
<br />
Lets not forget that the purpose of health insurance is to spread the cost around to everyone that participates in the insurance pool. Everybody pays a premium, everybody has the same copayments, and the pooled premiums are used to pay for the health expenses. Some people will have very few expenses and will pay in premiums than they get back in coverage and some people will have extreme expenses and will get far more back than they put in. <br />
<br />
As a tax payer, I already pay my premiums on both the state and federal level (the MA program receives money from the federal government) in the form of income tax. I am not against copayments as long as the amounts are reasonable and applied fairly. But the way that this copayment is being implemented (more on that in a bit) makes it clear that it is a targeted charge on a very narrow group of people.<br />
<br />
Of course the counter argument here is that I always have a choice and don't have to pay the copayment. I could choose to not have the services for my children, I could choose to go with less expensive services, or I could choose to go with a different type of health insurance. <br />
<br />
But all of these options are just illusionary and there is no real choice. <br />
<br />
As a parent, I would be negligent if I did not do everything in my power to provide medically necessary services for my children. As a consumer, I have extremely little ability to change the cost of services or to pick less costly services. When you have to spend your time fighting to get any services let alone appropriate services, you have no ability to haggle over the price. And as for a choice of health insurance, there is no choice. The choice is between no services or Medical Assistance.<br />
<br />
So basically the "choice" comes down to not having medically appropriate services for my children or paying an extra 5% of my gross income to the state every year.<br />
<br />
The end result here is going to be one of two things. Either a family will be able to afford this extra tax and continue services for their children or they will be forced to cut services for their children. My family may be able to cut enough other things that we will be able afford this new tax and continue services but I suspect that many other families won't be able to do so.<br />
<br />
I am sure that the State would disagree with me characterizing this copayment as a new tax. In fact, they say that "<a href="http://listserv.dpw.state.pa.us/scripts/wa.exe?A3=ind12&L=NEWS-RELEASES&E=quoted-printable&P=421216&B=--_000_64A4DD4C1638A24BBE1084C4F8828824C97980401EENHBGMBX09PAL_&T=text%2Fhtml;%20charset=us-ascii">targeting co-payments based on ability to pay will ultimately protect the safety net and allow us to continue to effectively serve Pennsylvanians now and well into the future</a>."<br />
<br />
The problem is that the State's own numbers belie their own assertion. <br />
<br />
According to the numbers that they provide, providing these disability specific services costs taxpayers "approximately $700 million a year". But the potential savings from this copayment are approximately $4.3 million per year or about 0.6% of the total spent. <br />
<br />
When you put these numbers in terms of the entire yearly MA <a href="http://www.dpw.state.pa.us/publications/budgetinformation/index.htm">budget</a>, the result is even more absurd. The MA program cost $16 billion for fiscal year 2012-13, of which roughly $8 billion was spend on people with disabilities (all disabilities, not just autism). So terms of the amount spent on all disabled people we are talking about 0.05% of the budget. In terms of the entire budget we are talking about 0.03%.<br />
<br />
I don't see how pushing 0.03% of the total expenditures back onto families will "ultimately" protect the system. If the goal is to protect the system you might need to start were you actually are spending a noticeable amount of your budget.<br />
<br />
But I can see how pushing that amount back onto families who are already financially struggling will result in a loss of services to disabled children.<br />
<br />
And then there is the matter of how this copayment was <a href="http://www.pabulletin.com/secure/data/vol42/42-32/42-32.pdf">announced</a> (see if you can find it in there), how public comments on the copayment were basically <a href="http://services.dpw.state.pa.us/olddpw/bulletinsearch.aspx?BulletinId=4855">ignored</a>, the extremely short time period between announcing the copayments and them taking effect (about a month), and the fact that other ways that the State <a href="http://pennautism.org/uploads/Copay_Facts_Concerns_Summary.pdf">could better offset the costs</a> that are already active. For example, PA Act 62 requires certain private insurance to pay up to 36,000 per child per year for ABA services. If that act were actually implemented and fully enforced that could save the State over $30 million a year.<br />
<br />
There is also the little matter of implementation. This copayment is supposed to become active on Monday, October 1st (yes, tomorrow) for new families and a month later on Nov 1st for existing families but there is almost no information a family can use to figure out how much of a copayment that they will be hit with. Under the new system, each provider will be responsible for independently collecting the copayment for their services and there is some magical and yet to be determined method for coordinating charges across providers to make sure that a family isn't overcharged.<br />
<br />
My children have services spread out across three or four providers and I have absolutely no information about how they bill for services, how much of a copayment will be charged for each service, nor is there any system in place for me to question the charges. So when (not if, when) I receive bills that total more than the 5% of our monthly income, do I pay the bills and try and get the money returned in the future or do I try to dispute the charge and constantly risk service disruptions and my credit rating?<br />
<br />
In theory I could contact the state department that is responsible for the program but since they can't even get their phone system working well enough for me to be able to reach them via phone and the chance of an email or regular letter being answered is about a million to one, I am not going to hold my breath. <br />
<br />
And even when you do get a hold them their idea of customer service is somewhat lacking. I once had the person assigned to my children's case tell me that she gives priority to children who have "real problems" and since my children just have autism they would just have to wait for her to get around to their case.<br />
<br />
In other words, the actual implementation of this new copayment is likely to be a complete and utter mess and it is going to take a substantial amount to keep track of it all. And that's just want families whose children have autism need, one more large problem to deal with.<br />
<div>
<br /></div>
M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com1tag:blogger.com,1999:blog-1892134081049774386.post-71648413975376280962012-09-14T11:37:00.001-04:002012-09-14T11:37:49.365-04:00Revisiting the Rhetoric About the Pertussis EpidemicA few years back, <a href="http://autismjabberwocky.blogspot.com/2009/05/study-watch-parental-refusal-of.html">I</a> <a href="http://autismjabberwocky.blogspot.com/2010/02/parental-refusal-of-pertussis-vacation.html">talked</a> <a href="http://autismjabberwocky.blogspot.com/2010/07/rhetoric-about-pertussis-epidemic.html">quite</a> <a href="http://autismjabberwocky.blogspot.com/2010/08/pertussis-outbreak-in-california.html">a</a> <a href="http://autismjabberwocky.blogspot.com/2010/08/pertussis-outbreak-in-california_19.html">bit</a> about how pertussis (aka whooping cough) was becoming more common again and what the reasons for it might be. Back then, the <a href="http://autismjabberwocky.blogspot.com/2010/10/media-bias-and-pertussis-epidemic.html">reason du jou</a>r in the mainstream media and certain parts of the autism world for the epidemic was that the more and more parents were refusing to give their children the pertussis vaccine which was leading to a decrease in herd immunity and allowing pertussis to make a come back. This was the reason used in spite of the fact that there was <a href="http://www.cdc.gov/eid/content/16/2/297.htm">evidence</a>, even back then, that other factors played a larger role in the pertussis epidemic.<br />
<br />
Well, lets fast forward to today and a study<sup>1</sup> that was just published in the New England Journal of Medicine that suggests that the main cause of the pertussis epidemic is that the vaccine induced immunity doesn't last nearly as long as was previously thought.<br />
<br />
The old idea was that the vaccine induced immunity gradually faded over the years so that a person who was fully vaccinated would only need a booster shot every 8-10 years or so to maintain their immunity.<br />
<br />
The new idea is that the vaccine induced immunity starts fading quickly after the last vaccine dose. According to the study, the odds of contracting pertussis increased an average of 42% per year. So instead of needing a booster in ten years to maintain immunity, this finding suggests that the immunity is almost gone ten years out. <br />
<br />
But that ten year figure assumes that the vaccine is at least 97% effective in the first year. If, as other recent results have suggested<sup>2</sup>, the vaccine is much less effective than previously though, the immunity would fade even faster. If the vaccine were 90% effective to start that would mean the protection would be cut in half in about four years and largely gone in six years.<br />
<br />
These numbers are just approximations and are going to vary based on a large number of factors but I think the overall point is clear - the current pertussis vaccine isn't nearly as long lasting as was previously thought. The data from the outbreaks going on around the country also supports this idea. I'm not going to go into details but, as an example, roughly one third of the cases in outbreak in California in 2010 were in mostly vaccinated children from 5 to 7.<br />
<br />
So the main reason that pertussis is becoming more common isn't that parents are refusing the vaccine but rather that the vaccine doesn't work as well as it was thought to. While this reinforces the idea that vaccines play a critical role in protecting the population from serious illnesses it also serves as a reminder that vaccines aren't sacrosanct. A vaccine should not be assumed to be safe and effective just because it is on the vaccine schedule.<br />
<br />
This also serves as a reminder that we should wait for actual data and not jump to conclusions.<br />
<br />
If you are interested in further reading on the subject there is the study abstract <a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1200850">here</a> and there are articles in <a href="http://healthland.time.com/2012/09/13/whooping-cough-vaccine-wanes-over-time/">Time</a>, <a href="http://children.webmd.com/news/20120912/whooping-cough-vaccine-protection-wanes-fast">Web MD</a>, <a href="http://online.wsj.com/article/SB10000872396390443696604577647992435770620.html">The Wall Street Journal</a>, <a href="http://abcnews.go.com/Health/whooping-cough-vaccine-protection-short-lived/story?id=17221497">ABC News</a>, and <a href="http://www.cbsnews.com/8301-504763_162-57511663-10391704/whooping-cough-vaccine-found-to-wane-in-effectiveness-after-age-6/">CBS News</a>.<br />
<br />
<br />
<b>References</b><br />
<br />
1. Klein NP, Bartlett J, Rowhani-Rahbar A, Fireman B, Baxter R. Waning protection after fifth dose of acellular pertussis vaccine in children. N Engl J Med. 2012 Sep 13;367(11):1012-9.<br />
PubMed PMID: <a href="http://www.ncbi.nlm.nih.gov/pubmed/22970945">22970945</a>. DOI: <a href="http://dx.doi.org/10.1056/NEJMoa1200850">10.1056/NEJMoa1200850</a><br />
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2.Witt MA, Katz PH, Witt DJ. Unexpectedly limited durability of immunity following acellular pertussis vaccination in preadolescents in a North American outbreak. Clin Infect Dis. 2012 Jun;54(12):1730-5. Epub 2012 Mar 15.<br />
PubMed PMID: <a href="http://www.ncbi.nlm.nih.gov/pubmed/22423127">22423127</a> DOI: <a href="http://dx.doi.org/10.1093/cid/cis287">10.1093/cid/cis287</a>M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com0tag:blogger.com,1999:blog-1892134081049774386.post-41782575224015202402012-09-08T10:59:00.000-04:002012-09-08T12:14:15.721-04:00Rare and Potentially Treatable Form of AutismA group of researchers has identified a possible biological mechanism that might be responsible for a rare form of autism. In these cases, mutations of the <a href="http://www.genecards.org/cgi-bin/carddisp.pl?gene=BCKDK">BCKDK gene</a> inactivates an enzyme that is necessary for breaking down certain types of amino acids. These essential amino acids cannot be created by the body and can only be absorbed from food. <br />
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It isn't clear exactly how the absence of these essential amino acids leads to autism however there is some limited data from mice and anecdotal data from parents that providing appropriate supplements can restore the normal level of these amino acids and lead to improvements in the symptoms of autism.<br />
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If all of that sounds a little confusing, think of it this way. A small genetic mutation prevents you from absorbing critical substances from your food and the long term lack of these substances causes autism. <br />
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If you are interested in more information about the subject, there is a good write up over on <a href="http://questioning-answers.blogspot.com/2012/09/bckdk-mutations-treatable-form-of-autism.html">Questioning Answers</a>, there is an <a href="http://www.nature.com/news/amino-acid-deficiency-underlies-rare-form-of-autism-1.11375">article</a> in Nature describing the finding, as well as the <a href="http://www.sciencemag.org/content/early/2012/09/05/science.1224631">actual paper</a>. There is also some details about what the the BCKDK gene does and prior links to autism <a href="http://www.ncbi.nlm.nih.gov/sites/entrez?db=gene&cmd=retrieve&dopt=default&rn=1&list_uids=10295">here</a> and <a href="http://omim.org/entry/611913#reference7">here</a>.<br />
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At the risk of sounding like a <a href="http://autismjabberwocky.blogspot.com/2011/06/what-if-autism-isnt-neurodevelopmental.html">broken</a> <a href="http://autismjabberwocky.blogspot.com/2012/07/read-between-lines.html">record</a>, I think it is going to become increasingly clear over time that many, if not most, cases of autism are going to caused by a process like this. We are going to find that there are disruptions to critical biological processes that lead to the symptoms of autism and that by correcting these biological disruptions we will be able to help people recover from autism. <br />
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We are going to find that the behaviors of autism are a side effect (co-morbid, if you will) and that the real problem is the biological disruption and the damage that causes. So instead of the brain being wired "differently" because that it is written into the person's genes, it wired differently because some process is preventing it from developing normally.<br />
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However, as I said before, a critical part of a model like this is that recovery will be a <a href="http://autismjabberwocky.blogspot.com/2012/02/autism-recovery-two-step-process.html">two step process</a>. Simply correcting the underlying disruption will not instantly remove the symptoms of autism. It will take time for the body to recover from the damaged caused and it will take time for old behaviors to be unlearned and new skills to be learned.<br />
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But the important part is that autism can be successfully treated. The key is going to be finding what the disruptions are in a specific person and finding a way of correcting those disruptions.M.J.http://www.blogger.com/profile/12033918835169823548noreply@blogger.com0