Sunday, January 18, 2015

The End of the Beginning

Last 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.

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".

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.

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.

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.

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.

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.

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.

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 -

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".

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.

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.

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.

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.

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.

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.

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.

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.

Take care and good luck.

Matthew Joseph

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...

Sunday, October 26, 2014

Neurodiversity : Biological Fact or Fiction?

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.

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 -
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.)
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.
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. 
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. 
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. 
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)
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.

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.

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 provided since it is a common one -
What It Means: 
Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.
What It Doesn’t Mean: 
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. 
Neurodiversity is not a political or social activist movement. That’s the Neurodiversity Movement (see below), not neurodiversity itself.
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"?

The answer is no for a number of reasons.

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.

Maybe a better way of saying this is that you can't represent infinity in about 1.5 kg of tissue.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Saturday, September 13, 2014

Research Shenanigans At The CDC

Unless 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).

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.  

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.

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 press release 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 -
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.
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.

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.

However that wasn't the CDC's response to the issue - the CDC put out a response 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.

Anyone remember the controversy surrounding Poul Thorsen?  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.

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.

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.

Sunday, March 30, 2014

Autism Rising : The Emperor's New Clothes

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.

In case you haven't heard, the CDC just this week released the latest 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.  

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.

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?

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.

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 2000 report when the new, unexpectedly high rate was 6.7 per 1,000 -
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.
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 -
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.
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?

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.

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 "later diagnosis" 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.

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 -
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.
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?

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.

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 -

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.

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.

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.

Sunday, December 22, 2013

ASAN on Non-Verbal Autism

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.

So, first thing first, if you haven’t seen the video, go watch it here

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 -

People know what "nonverbal" means: I can't speak, so I use my computer to communicate.

Even though I couldn't talk, my parents believed that I could understand speech.

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.

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.

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.

What the video seems to be referring to is a form of verbal apraxia 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.

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.

People with apraxia will typically have the ability to receptively understand language and the ability to expressively communicate using methods other than speech. 

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.

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.

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.

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.

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.

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.

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. 

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. 

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.

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, this book 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 this book.

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.

Tuesday, November 19, 2013

A Tale of Two Communities

An 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.

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.

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 audited financial statements, 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.

One of these things is not like another.

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.

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.

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.

Saturday, November 16, 2013

Missing the Point

A couple of days ago an article 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.

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).

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.

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 -
  1. The number of children diagnosed with autism is growing rapidly.

  2. Autism is hard on families.  Many families struggle on a day to day basis with autism and are doing little more than treading water.

  3. Autism is extremely expensive in financial terms for everyone and in emotional and health terms for families.

  4. The outcomes for children with autism are poor and taking care of someone for their entire life is pretty expensive.
So ...
  1. 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.
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.

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.  

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.

For example, in his response to the Autism Speaks post, John Elder Robison says - 

"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."

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.

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.

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.

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.

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.

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 -
  1. How many people are receiving a diagnosis of autism and how quickly is the number changing?

  2. 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.

  3. 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?

  4. 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?

  5. How many people go on to develop other, related conditions such as epilepsy that are much more common in autism?

  6. 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?
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.

Go to the original sources and think for yourself.

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.  

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.