Wednesday, July 28, 2010

Jabberwocky of the Day : Narcissism

Consider this post at Age of Autism - Brian Deer: Portrait of a Narcissist
... Even worse, there is likely no better example of one man’s online shrine to himself than – a cesspool of self-adulation. Nothing quite sums this up better than a particular webpage that reads “Brian’s pictures” at the bottom of the homepage. You’d think it would be the many different photos of news events from his journalistic exploits, but a click of the mouse shows that it is in fact – literally – all him.
Brian Deer has switched the page labeled "Brian's Pictures" to point somewhere else, but this is what the original page looked like as of Jan 12, 2008.  As AoA pointed out, "Brian's Pictures" is filled not with pictures his work or other pictures he as taken, but rather with pictures of of himself.

Thirty six of them to be exact.

I don't know about you, but assuming that anyone (other than your mother) would want to look at 36 pictures of you is a bit much.  I think it would be safe to say that, at the very least, Brian Deer likes his own picture just a little too much.

But Brian Deer has many faults, such as not respecting the confidentiality of medial records and blaming disabilities on the parents, and narcissism isn't going to make that list worse.  So I filed this AoA post under the "fluff" category and forgot about it.

That is, until I ran across this over at the "Countering..." blog -
Deer placing pictures of himself on a page called Brian Deer's pictures doesn't fit the definition of narcissism. I do begin to see the problem, though. The folks over at AoA must not have access to a dictionary or a good grammar book, either.

Narcissism (noun) - inordinate fascination with oneself; excessive self-love;vanity.

So if putting 36 pictures of yourself on a semi-professional website under the link "Brian's Pictures" isn't vanity or an inordinate fascination with yourself, I have to wonder what would be.  It seems like a pretty open and shut case to me.

People want to look my 36 pictures of me =  inordinate fascination with oneself; excessive self-love;vanity.

But the real irony here comes from the rest of the KWibbler's post when she takes the time to explain what AoA should be covering instead of posting this fluff.  I don't know what it funnier, the narcissism of presuming to tell another site what they should consider important what you consider important or the irony in complaining about someone else not spending their time properly while in the middle of wasting your own time talking about the presumably non-important subject.

I think the the KWibbler should take her own advice from the prior day -
Everyone needs drama-free days. Everyone has the right to have a day off from the incessant internet autism wars. And every now and then, perhaps folks ought to check themselves to make sure they aren't part of the problem.
Don't feed the fluff monster and, what ever you do, don't feed the KWibbler.

Saturday, July 24, 2010

Trace and Toxic Elements Related to Severity of Autism

Photo via Wikimedia Commons
Is there a relationship between certain trace and toxic elements and autism?

 I know this is one of those areas that gets everyone all riled up, but I ran across the a study earlier this month and thought the results were interesting and worth pointing out. Just a quick note before I start, if you are one of the people who see the M word used in an article about autism and get all bent out of shape, I would ask that you ignore that part of it and consider the other the other findings. So, without further ado..

The study in question looked for and found a possible relationship between the levels of trace and toxic elements and the severity of autism in children. The trace elements in question are copper, zinc, magnesium, and selenium while the toxic elements are lead and mercury.

The researchers looked at hair and nail samples from a total of 95 children. These children were divided into four groups - a typical (control) group with 50 children, and a low functioning group (LFA) with 15 children, a medium function group (MFA) with 15 children, and high function group (HFA) that also had 15 children. The children were placed in their groups by their score on the Childhood Autism Rating Scale (CARS) test, a older but still valid test for autism. Children in the HFA group had a score on the CARS of 15-30, MFA was 30-45, and LFA was 45-60.  The children lived in India and were between the ages of 4 and 12. The groups were matched on age as well as gender.

The researchers analyzed the samples and found that there were significant relationships between the severity of autism and the measured level of these elements. In general, children with more severe autism had higher levels of copper, lead, and mercury and lower levels of selenium and magnesium. Zinc was the exception as there wasn't a significant relationship between severity and the level measured. However, children in the LFA group did show a significant decrease in zinc when compared to the control group.

Since these relationships are easier to visualize rather than read, I am including some graphs below that show the mean values for each group for each sample type (hair and nail). Most of the values below reached the threshold for significance ( p < 0.01 or p < 0.001) but not all of them did (Zinc in hair and nails for MFA and LFA as well as lead in nails for MFA and HFA did not).

There are two caveats to keep in mind as you look at the charts.

First, these data points do not "prove" that autism is caused by any specific thing. They only show a relationship between the level measured and a severity of autism. Or to put it a different way, the relationship here is between the level measured in hair or nails and the score on the CARS test.  Although on the flip side, CARS is a decent test and can distinguish between autism and pdd-nos, so it should be an acceptable way of determining severity.

Second, there is no data about why the numbers look the way they do. All of the children were from the same general area but that does not mean that they all come from the social or economic background. It is also entirely possibly that these differences could be caused by differences in diet between the groups

However, it is my feeling that these results do reflect the reality of what can happen in certain children with autism. As a case in point, all of my own children show an elevated (almost toxic) level of copper, a low level of zinc (2 of 3 were zinc deficient), and low levels of selenium.


Lakshmi Priya, M. D., & Geetha, A. (2010). Level of Trace Elements (Copper, Zinc, Magnesium and Selenium) and Toxic Elements (Lead and Mercury) in the Hair and Nail of Children with Autism. Biological trace element research. doi: 10.1007/s12011-010-8766-2.

Friday, July 23, 2010

Murder Should Not Be Used For Propaganda

Earlier this week a mother in Texas killed her five year old son and two year old daughter by strangling them with wire.  After they stopped breathing, she called 911 and confessed to the crime.  This event is a tragedy and I would offer my condolences to the family and friends of the victims.

On the 911 call, the mother said that she killed her children because having children with autism was too much for her to handle, she wanted "normal" children.  There are reports that the mother had depression as well as other mental health issues.

I know first hand that having multiple children with autism can be hard, even on the good days, and that when you have something like depression on top of that you get a bad situation.  But I think it goes without saying that there is no reason or excuse for what happened.

Autism is never a justification to murder your children.

I don't think that anyone, regardless of their beliefs about autism, would want something like this to happen.  And yet, there are those who seem unable to resist using this horrific event to further their autism agenda.

As was pointed out on Autism's Gadly, an individual by the name Sarah Pripas wrote about she thinks that events happened because of the negative talk about autism.  The post is short and to the point, but here are some highlights -
This is where hatred leads. A woman in Texas is believed to have strangled her two autistic children.  ...
 ... the underlying feeling of entitlement to a "normal" child, and the feelings of victimization upon having an autistic child, is a staple of autism rhetoric. This kind of rhetoric really is dangerous.
This is the reason why hateful representations from well-meaning people and organizations need to be firmly opposed.
Go read the rest of the post if you want to get your blood boiling.  I don't have any clue what the heck this person is thinking in writing what she did, but I have a few thoughts of my own that I feel the need to share with her.

First, foremost, and most importantly - we are talking about two children being murdered by their mother.  You DO NOT use the murder of children to make an ideological point nor do you sit around and basically say "I told you so".  You just do not do that.  Period.

Second, these murders had nothing to do with autism.  You might think it is about autism, but there are many parents whose children have autism and who don't think happy thoughts about autism.  But strangely, we don't go around murdering people because of it.  The problem here was not autism but rather what was going on inside the mother's head.  She decided that she did not like her life or her life with her children and took action to end it.  Go look up the narcissism if you hare having trouble with the concept.

Third, having one or more children with autism can be very stressful.  If you don't think that is the case then you are simply deluding yourself.  What do you think would happen to that stress if parents were forbidden by the laws of political correctness from talking about what their lives are like because of autism?  What do you think would happen if parents not only had to deal with autism but were forced by society to put a happy face on what can be a difficult situation and bottle up the stress and tension?  How well do you think that is going to work?  Autism can suck royally for both the parents and child and no amount of positive thinking or ignoring reality is going to change that.

Lastly, if you really think that those of us who have "hateful" (aka realistic) views of autism in any way shape or form provided a justification for murder or caused these two children to be murdered, then you can go to hell and take your idiocy with you.

The autism world doesn't need people who use the murder of children to prove a point.

Thursday, July 22, 2010

Biased Research on Perceptions of Autism

Over at Astrid's Journal, Astrid is talking about a recent study that claimed to look at "lay perceptions" of autism. While she does have a point that there is a divide in the autism community in how autism is portrayed, the study she cites is absolute nonsense.

The "study", and I use that term loosely, gave ten "lay" people (people not involved in the autism world) a "semi-structured" interview about autism and then looked at the data using "interpretative phenomenological analysis" and "discourse analysis". Yes, those are real things.

Based on their analysis, the authors came up with the following conclusion -
Participants demonstrated clear views (although not necessarily correct) about the nature, origins and manifestations of autism. They drew upon their understanding of normal child development to make these assessments and they made judgements about the ability of individuals with autism to attain social independence. It is recommended that interactions between lay people and people with autism may help develop positive conceptualisations of autism.
I have not read the study, nor do I intend to, because by the time you actually read the study (or the conclusion), you have missed the point. Where any discussion of this "study" should have stopped is at the point where they point where you see that the results are based on the opinions of just 10 people.

To be fair, Astrid does note that "the study group was very small (only ten participatins), so no generalizations should be made" but I think that is the wrong way to think about the "study". Ten random people cannot be representative of anything, especially a population as large as the "lay" autism population (think billions).

So, the question is then what are these ten peoples' opinions being used to represent? Or to borrow a line from the person who writes The Last Psychiatrist, what do the authors want to be true?

To help answer that question, I would direct your attention back to an earlier "study" written by the same two people that looks suspiciously familiar. In this "study" the authors gave a "semi-structured" interview to 9 young people with high functioning autism who were "capable of providing a verbal account of their perceptions of autism and diagnosis experiences" and looked at the data using "interpretative phenomenological analysis".

Notice the setup. Another infinitesimally small group whose opinions were analyzed and taken to mean something. The conclusion from this "study"?
In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration.
So, what do the authors want to be true? They want to people with autism (presumably the high functioning ones) be given a greater voice in describing their autism and "lay" people to interact with them so that they can develop a positive attitude towards autism.

OK, fair enough, people with autism are people just like everyone else and have the right to have their voices heard. But what do we do with the vast number of children with autism who aren't able to communicate well enough to provide their perspectives of autism? Do we let the young, high functioning adults give a perspective for them?

Should we keep on ignoring their needs while singing kumbaya and thinking happy thoughts about autism?

The real questions are how did this nonsense get published in the first place and how did the authors get away with suggesting that they are talking about the other people's perceptions of autism. If they wanted to voice their opinions about autism, they should write articles that state that these are their opinions and publish them as such.

We don't need more junk pretending to be science.

References (and I use that term loosely)

Huws JC, Jones RS. Diagnosis, disclosure, and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism. J Intellect Dev Disabil. 2008 Jun;33(2):99-107. PubMed PMID: 18569397. DOI: 10.1080/13668250802010394

Huws JC, Jones RS. 'They just seem to live their lives in their own little world': lay perceptions of autism . Disability & Society, 25:3:331-344. DOI: 10.1080/09687591003701231

Wednesday, July 21, 2010

The Hidden Horde Still In Hiding

Last time I talked about a recent study that looked at adults with severe intellectual disability (ID) in a city in Iceland and found that a decent number of them had undiagnosed autism. The numbers are fairly small (25 cases) but then again, so is the city that we are talking about (population 70,001).

But still, if this many cases of autism were missed in a population that presumably receives a lot of medical care, does that mean that there would be an equal or greater number of cases missed in the general population? Is there really a hidden horde of adults with autism? The data from the last study doesn't directly answer this question but that hasn't stopped some people from speculating that this study helps provide the answer.

So lets look at what numbers to see what we can possibly gleam from the study. As you read the following, please keep in mind that most of this is speculative in nature and could easily be completely wrong.

Lets start off with some basic assumptions.

The study talks about "adults" with severe ID and autism, but what does the label "adult" mean here? It is always important to know how old the "adults" are and when they were born. Any adult population that you are looking at should have an autism prevalence in line with the rest of their generation. That means if we are talking about "adults" born after the mid 1980s when the autism rates started shooting up we could reasonably expect then to have a higher autism rate than "adults" who were born in the 1960s.

The study says that the age range of the participants was from 18 to 67 years old, but it isn't exactly clear what these ages are in reference to. In one location the study seems to give the ages in reference to the year 2000 but then the results were not submitted for publication until this year. I can't believe that all of the data collection was done in 2000 and it has taken ten years to analyze the data. So based on the dates, the youngest participant was born sometime between 1982 and 1992. When you consider the fact that the majority of the cases found were younger (under 32), that means we are likely looking at people born between the the mid 1970s to the mid 1980s.

The next assumption is how many people with autism we expected to find. Fortunately, we have a study that looked at autism rates in Iceland during two different time period - 1974 to 1983 and 1983 to 1993. During the first time period the rate was approximately 3.8 per 10,000 while during the second it was 8.6 per 10,000.

One thing to note here is that the diagnosis during the earlier time period were largely based on an earlier version of the diagnostic criteria (ICD-9 vs ICD-10). The earlier criteria did not have as broad of a definition of autism and focused more heavily on people who would have had cognitive problems in addition to autism.

So, with that in mind, we get to the first question.

Did the initial number of people with autism in the severe ID population agree with the what the earlier estimates were for the time period? We know that the prevalence was thought to be 3.8 per 10,000 in the "adults" born between 1974 and 1983 which means that we would expect to find a total of 26 people with autism. The study initially had 13 people with autism - 11 in the population examined (119) and 2 in the part of the population that was not included (if you care about the details, ask in the comments and I can elaborate).

There would be two other groups of people with autism - those in the population with mild ID and those in the general population who didn't have ID. I don't have an exact figure for how many people have ID, but an accepted range seems to be between 1% and 3% of the population. Based on some discussion on the study, I am thinking that number in Iceland is little under 1% or approximately an additional 444 people with mild ID.

We know that autism is much more common in severe ID than in milder ID and it was present in about 5% of the severe cases.  Lets assume that the rate is about half in the milder cases which would mean about an additional 11 cases.  That brings the total to 24, but we aren't done yet.

The last part of the puzzle is how many people with autism are expected to have a form of ID. Again, there are no good numbers here but for now I am going to go with a rate of 80% as we are talking about the earlier criteria (again, if you are curious about this number, ask in the comments and I will try to explain).

Given this 80% number there would be an additional 6 cases which would bring the total up to 30 cases. That number is higher than the 26 that we would have expected, but considering the estimations used, the numbers aren't too far off.

Which brings us to the next question - what does the increase in the number of cases in the severe ID group mean for the entire population?

Since the second part of the study only examined half of the severe population, I am going to use the 21% rate that the researchers gave for the severe ID group and about 10% for the milder ID group. Putting these two figures together means that we would expect about 100 people with ID to have autism.

I used an 80% figure for the number of people with autism and ID in the earlier estimate, but for this estimate I am going to drop it. The reason is that we are talking about current diagnostic criteria which includes many milder cases of autism and we have some recent estimates from the CDC that we can use. The estimates from the CDC vary depending on the state you are looking at and how broad your definition of ID is. The highest estimate using the broadest definition of ID is about 80% while the lowest using the narrowest definition of ID is about 30%.

For the sake of simplicity, I am going to take the 41% figure that the CDC cites as an average. Using that figure, we arrive at a total of about 245 people with autism. This is a rate of about 35 per 10,000.

The final question is what would we have expected to find if autism is as common in adults as it is in children?

Looking back at some of the estimates from the few years, you would see numbers like 1 in 250, 1 in 150, and, most recently, 1 in 110. Those numbers translate into 40 per 10,000, 66 per 10,000 and 90 per 10,000.

So the answer is 35 per 10,000 compared to 90 per 10,000

Or in other words, the most recent estimate for autism is still 3 times higher than an aggressive extrapolation based on the data in the study.

The bottom line is that the hidden horde is still in hiding

Monday, July 19, 2010

Prevalence of Autism in Adults with Severe Intellectual Disability

One of the many unanswered questions when it comes to autism is just how many adults have autism.  While this may seen to be an academic question at first, the answer to the question is quite important.  The reason is that if we knew how many adults have autism it would give us a clue to whether autism is more common now than it was in the past.  If there are just as many adults out there are children, that would mean that autism is not becoming more common and it is likely that we are just better at recognizing it.  If there are not as many then that would strongly suggest that something else is going on.

Unfortunately, there have been very few (if any) high quality studies that have looked for autism in adults.  For example, the most recent study that looked for autism in adults in the UK came up with a figure of 1% but the study had major problems with how it was done.  As a result, we can only guess at how many adults have autism.

With that in mind, consider a recent study published that was recent published in the Journal of Intellectual Disability Research.  I wish I could say that it directly looked at the autism rates in adults but it didn't.  What it did do is look at how common autism is in adults with intellectual disability.

Intellectual disability (ID) is roughly defined as having an IQ under 70 along with potential problems with motor, language, and self help skills.  ID is thought to be fairly common in people with autism - estimates range from 20% all the way up to 80% when you include borderline ID.

In this study, the researchers looked at all of the adults (ages 18 to 67) with severe intellectual disability (IQ less than 50) who were registered for government services in in Reykjavik, Iceland in 2000.  The city had a population of 70,007 and there were a total of 256 adults were registered for services for severe ID.

The researchers sent out letters to all 256 adults and attempted to recruit them for this study.  However, only 119 of the 256 people elected to participant.  Those who elected to participant were significantly younger and more likely to live in group homes than those who didn't.  As you will see, this fact become important later on.

These 119 people were then screened (by psychology students working on their thesis) using a slightly modified Bryson scale followed by a the Childhood Autism Rating Scale (CARS) with modified cut-off point (26 or above instead of the usual 30 or above).  Afterwards, an experienced clinician administered an ADI-R to confirm that the person did in fact have a form of autism.

The overall results were not that surprising.  The study identified a total of 25 cases of autism, 14 of which had did not previous diagnosis of autism.  Seventeen of these cases were autism while the other 8 where atypical autism (think PDD-NOS).  I could not determine from reading the study what the exact breakout of autism vs atypical autism was in the initial 11 cases compared to the new 14 cases.  It appears that the 11 people who already had a diagnosis had a diagnosis of autism which means 6 of the new cases were autism while 8 where atypical autism, but I could easily be wrong.

The breakout of autism vs atypical autism in the groups may sound like a minor point, but it actually can help us determine why the cases were "missed" in the past.  One of the arguments against the rate of autism actually increasing is that the diagnosistic criteria have undergone major revisions over the years.  The earlier criteria were much more limited in what they would call autism while the most recent crieria have expanded their scope, especially in the area of atypical autism or PDD-NOS.  Therefore, if the newly diagnosed group were mostly in the atypical group, it could be argued that they were "missed" earlier because they would not have met the criteria for any form of autism.

But from what I can gather, it is a mixed bag with only about half of the newly diagnosed people falling under an atypical label which means that the change in the diagnostic criteria only played a partial role in the new cases.

Regardless, one of the other interesting points here is that most of the people diagnosed were relatively young.  The ages ranged from 19 to 63 with a mean of 32.56 and a standard deviation of 10.92.  The study does not give more of a break out of how these cases are distributed by age, but from looking at the statitics, you can tell that there are far more younger cases than older ones.  I don't know whether this age bias is a function of the subset of the population that responded (which we know were younger), or whether it is a function of autism becoming more common each year (younger people have a higher autism rate), or both.  I suspect it is both.

Going back to the population of adults with severe ID, the rate of autism in this group was about 21%.  This number is not surprising and, if anything, is on the lower side.  Other similar studies have suggested that the rate is higher, possibly around 30%.

But in general, the results of this study agree with earlier results and doesn't give us much new information.


Saemundsen E, Juliusson H, Hjaltested S, Gunnarsdottir T, Halldorsdottir T, Hreidarsson S, Magnusson P. Prevalence of autism in an urban population of adults with severe intellectual disabilities - a preliminary study. J Intellect Disabil Res. 2010 Aug;54(8):727-35.  PubMed PMID: 20633201.
DOI: 10.1111/j.1365-2788.2010.01300.x

Thursday, July 15, 2010

Jabberwocky of the Day

I will be continuing the theme that I started yesterday later this week and will be talking about how parents choose treatments for their children.  But today, I am going to take a short detour with several notable bits of nonsense that I ran across today.

First up, from the "what does the word increase mean to you" department, is a document that I found on the National Institute of Heatlth's autism page. This document is an overview of what we know about autism and, in a section entitled "How many people have autism", I found this gem -
Some estimates of prevalence rely on previously published studies. Researchers review all the published data on a topic and take the averages of these calculations to determine prevalence. Independent researchers recently conducted two such reviews. Based on these studies, the best conservative estimate of the prevalence of ASDs in the United States is that one child in 1,000 children has an ASD
The document was published in 2005. Today, the conservative number is that 1 in 110 children have autism, a staggering 900% percent change from only 5 years ago, but we still don't "know" whether autism is increasing.  I mean with only a 250% increase over 10 to 15 years followed by a 900% increase in five years, it is very hard to tell.

Next, from the "ouch, you just hurt my head" department, we have Sullivan (of LBRB infamy) chiming in with the non sequitur of the day in his comments on OSR #1 controversy. His comment was made in reference to the allegations that OSR #1 is an "industrial chelator". The company that makes OSR #1 had this to say about the the claim -
OSR#1® as produced by CTI Science is not now and has never been marketed or tested as an environmental or industrial chelator. Nor has OSR#1® been tested in humans as a chelator by CTI Science, and no claims of chelation treatment use are made by CTI Science.
Sullivan, in all of this wisdom, came up with this response to the statements -
[T]his may have been addressed already, but CTI science has *not* stated that OSR is *not* a chelator. (Quoted text removed). They state it is not an *industrial* chelator. They state that it has not been *tested* as a chelator by CTI Science.  Mr. Haley’s company was originally called “Chelator Technologies”.  The chemical used is a chelator.
How does a company responding to a claim that their product is an "industrial chelator" by saying it is not an industrial chelator get changed into them not saying that is is not a chelator by saying that is not a chelator? Maybe the logic makes sense to Sullivan, but it just hurts my head.

But the funniest quote of the day comes from the Clay Adams as a response to me labeling him a notorious bully -
I see he calls me a “notorious bully”, for taking Jonathan Mitchell to task with satire. What he failed to read was that it was all “pay-back” for him bullying people I know and like on his blog.
Because you know, you aren't being a bully if you are only doing it for "pay-back".

Wednesday, July 14, 2010

The Start of a Parent's Journey

Flickr photo by oxherder
The day that your child is born is one of the happiest days of your life.  It doesn't matter if it is your first, second, third, or (God help you) tenth child, you are excited to meet them and can't wait to see what sort of person that they will become.  If you happen to be lucky (heh) enough to have multiple children at once, you will also have the added excitement of wondering what it would be like to be a twin or triplet and will be vaguely uneasy about the notion of caring for multiple newborns at once.

Soon you will become comfortable in your role as a parent and, while wondering what it would feel like to sleep through the night, you start thinking about what sort of future that your child will have.  What will they do when they grow up?  Will they have a family of their own?  What sort of person will they be.

But not too long after that, you may start becoming concerned that something is not quite right with your child.  They aren't acting the same as nor developing as fast as their peers.  A seed of doubt enters your heart and you start worrying that something could be wrong with your child.  Fast forward several weeks, months, or years and you arrive at the fateful day when a "professional" has agreed to look at your child and tell you if anything is amiss.

On this day, your life as you know it can change.  If you are lucky, the professionals will tell you that you are being paranoid and there is nothing wrong with your child.  If you are unlucky, you might join the growing ranks of families whose children have disabilities.

For my family, that fateful day came when my twin daughters were just 18 months old.  My wife was already carrying our third child on the day that the "professionals" walked into the room and cheerfully told us that they knew what the problem was - our daughters had autism.

We were given a brief overview of what autism is and handed a stack of papers to read about what could be done to help children with autism.  We were given a few phone numbers that we could call for help and then kindly shown the door.

In a way, we were lucky.  The "professionals" who changed our lives forever at least had the decency to give us a nice stack of papers to read before showing us the door and telling us to have a nice life.  Many families don't even get that amount of guidance.

But there are always the few medical professionals who will take the time and effort to guide you down an appropriate path.  We were actually very fortunate to find such a professional who, six month after the initial diagnosis, helped guide us to find appropriate treatments for our daughters.  In that we were extremely lucky and I doubt that one out of hundred families is so lucky.

I am not writing this so that you feel sorry for families with newly diagnosed children or for my family in particular, but rather so that you can understand where most parents are coming from.

Parents are left on our own from almost the first day and have to find their own way.  That initial period is what shapes our views and guides us as we try to find a way to help our children.

Tuesday, July 13, 2010

The Ugly Face of Acceptance

When you talk about autism on the internet you need to be prepared to deal with some unpleasantness.  As anyone who has participated in the debates surrounding autism would tell you, you have to be prepared to be called names and have your mother's integrity and your father's identity called into question.  That is par for the course and you have to expect some degree of unpleasantness if you want to participant.

But what I don't understand are those who feel it is acceptable to question a parent's motives or love for their child.  Especially when it comes from those people who claim to be all about acceptance of differences.

Take for example what Harold Doherty  wrote recently about how he does care for his child.  I don't know the circumstances of why he wrote what he did, but if you follow what he writes on his site, you would have no doubt that he is very committed to his child and cares deeply for him.  He should not have to defend himself against attacks that suggest that he doesn't care for his child.  And yet some person felt that they had the right to question that.

Or take the recent incident involving a post at Age of Autism that was written by Kim Stagliano.  Ms. Stagliano put up a picture of one of her daughters and suggested that it would be a more appropriate image of autism for Autism Speaks to use.  In this picture, her 15 year old daughter is standing in the infant toy aisle at Target and is transfixed by the toys.  It shows, in the words of Ms. Stagliano, "the pain of a stopped clock".

I think every parent out there whose child struggles with autism understands exactly what Ms. Stagliano meant by her statement.  We understand all to well the pain, the struggles, and the battles we have to fight in order to help our children overcome their disorder.  We have to push our children to work twice as hard as other children in the hopes that they will be able get a tenth as far.

The reason that we do is that we love our children very much and want the best for them.  We take joy in who they are and what they have managed to accomplish in spite of being limited by autism.  But sometimes, in spite of it all, our children do not manage to overcome autism and are, as Ms Stagliano said, stuck in time.

I firmly believe that almost every parent out there understands this idea and felt that way on at least several occasions.  If they say that they haven't then they are deceiving either you or themselves.

But then there are those who argue for "acceptance", such as Alan Griswold, who take exception to what Ms. Stagliano had to say.  I would not have had a problem if Mr. Griswold respectfully disagreed with Ms. Stagliano.   And actually, I wouldn't have had a problem if Mr. Griswold less than respectfully disagreed.  But he went much further than that when he not only disagreed but also insulted Ms. Stagliano and her daughter in his response.  Below are the main points of his post -
... would make an excellent choice for an Autism Speaks advertisement. All the essential ingredients are there:
A picture of a beautiful autistic child engaged in an interesting, meaningful and no doubt productive activity for her—clearly delighted to no end.
A hovering, disapproving parent describing the entire tableau as “pain,” bemoaning the family's autism fate to the entire world, and wishing for someone—anyone—to do something—anything—to bring this horrible ordeal to an end.
He finished by saying -
Now if we could only get Autism Speaks to sponsor some form of cure against the Ms. Staglianos of the world ... I might find myself supporting that organization's eradicating mission.
I had prepared some clever retorts to Mr. Griswold's statements, many of them involving profanity, but after thinking about it, I believe a more direct approach is appropriate.

First, perseverating on infant toys is not a productive or meaningful activity for a 15 year old.  To suggest that this is the case is both demeaning to her abilities and an insult to the person that she is.  Mr. Griswold looked at the picture and made a judgement that obsessing over toys that most of the world's population outgrows by the time that they are two is a meaningful activity for her.  I can't believe that someone who talks of acceptance and diversity and tolerance would degrade a young adult like that.

Second, if Mr. Griswold actually took his head out of his ass and took the time to understand what it is like to see your child have to struggle so much and how much we wish we could spare them their suffering, then he would not be able to say such things.  We don't attempt to treat our children's autism because we feel that they are defective or a burden but rather because we care for them and want the best possible life for them.

Lastly, as for the suggestion that Ms. Stagliano needs some sort of "cure" or to be "eradicated", well, if you think a mother's compassion and caring needs to be eradicated, then you really do have a problem.

In the end, I think we need less acceptance and more compassion.  Autism is hard to deal with for everybody involved, regardless of whether you are a parent or the person living with autism.

But most of all, I think we need a cure for the "acceptance" of people like Alan Griswold.

Monday, July 12, 2010

Neurodiversity's Hypocrisy

How many times have we heard from the neurodiversity movement that anecdotal parental reports are not valid evidence and should be ignored? After all, the parents often just imagine effects or are mistaken about what they say. Or perhaps you have heard the line that correlation and causation are not the same thing and just because there is a correlation does not mean one thing caused another.

Now, while both of the above statements are true - anecdotal reports are not strong of evidence and just because one event follows another doesn't mean that they are related - the ND movement likes to beat people over the head with these lines to the point of absurdity. In my experience, they will disbelieve every anecdotal report and will simply refuse to consider that a temporal relation can have any sort of significance whatsoever.

You think that your child regressed into autism immediately after getting a shot, you just missed the earlier signs.

You think that a diet helped your child, you are imagining things.

You think that a specific intervention really helped - you don't know what they would have done without the intervention, maybe they would have progressed naturally.

You really can't read anything that the movement writes for any length of time without running head first into some form of these statements. I think these are almost slogans for the movement, right after their autism isn't a disorder and acceptance rhetoric.

So, imagine my surprise when over at the neurodiversity blog, we have statements by Kathleen Seidel using anecdotal parent reports from message boards as some sort of "proof" that OSR #1 has side effects -
Contrary to Prof. Haley’s suggestion that there have been no “severe” side effects associated with OSR, and contrary to Dr. Kartzinel’s assertion that adverse events have been “rare,” as soon as OSR went on the market, numerous anecdotal reports of side effects began to appear on online discussion groups frequented by parents of autistic children — most notably the 6,465-member ChelatingKids2 Yahoo! group. The volume of these reports slowed after the establishment of several new restricted-membership groups for discussion of OSR were established in the Spring of 2009, and since ChelatingKids2 was suspended the following August. Notwithstanding the slowing of open public discussion about OSR by its purchasers, the informal reports that have accumulated since its introduction into commerce provide compelling indications of OSR’s potential to significantly, unpredictably alter human fluid balance, disrupt mineral metabolism, and negatively affect gastrointestinal, respiratory and immune function, and should give pause to anyone tempted to trust the safety assurances of those who stand to profit from its continued sale.
You have got to be kidding me, parental reports are now a compelling indication? What the hell, have these people never heard of intellectual honesty? If you are going to take an approach, then at have the integrity to stick to your beliefs and not flip flop at a moments notice. Parental reports can't be a valid source of information on one hand and completely disregarded on the other.


The Autism Spectrum Dichotomy

One thing that I am constantly reminded of when I read about autism is how very different autism looks in different people. There are some at the extremely high end of the spectrum, who you would have a hard time telling apart from an average person, and then there are those are the extremely low functioning end, who have a hard time doing pretty much everything. And then there is everybody in between.

One of the ways that we attempt to deal with this difference is by using functioning labels, as in that person is high-functioning or low-functioning. Some people object to this use of labels but in general, it helps to give you an idea of what type of autism we are talking about. I find it helps to remember that a person is not limited to being the label but rather is capable of functioning better (or worse) depending on the exact situation that we are talking about.

The important thing is that people who are high-functioning are very different from ones who are low-functioning and need very different things.

It is my opinion that there are more children at the lower functioning side than the higher functioning side, and data from the CDC seems to bear this out. According to the CDC, approximately 41% of children with autism have an IQ less than 70 which means that 41% of children with autism have an intellectual disability in addition to autism. Also according to the CDC, about 40% of children with autism do not talk at all. There are other statistics available from a variety of sources, but as they are equally depressing, I am not going to point them out.  In general, children with an intellectual disability or who can't talk would be considered lower-functioning.

On the flip side you have adults with autism who are just slightly socially quirky and like to claim that autism gives them special intellectual gifts. They also like to diagnosis important historical figures with autism and pretend it was their autism that made them important.  Or they like to serve on governmental committees and pontificate about what people with autism need.

To give a more concrete example, below is the difference between low and high functioning.

From Astroturf, I mean "The Thinking Person's Guide to Autism" where "informed decisions are made with love", we have an adult talking about his Aspergers -
When I was diagnosed with Asperger’s syndrome in 2003 at the age of 25, I had already pretty much given up hope of ever finding and getting a job that was right for me. All I had to show for my job skills was a high school diploma with a lousy grade average, and a few exams which I barely passed when I tried studying to become a school teacher and when I tried getting a bachelor degree in English at the university, neither of which I finished.
You can read the rest at the link above. It is pretty standard stuff from someone who didn't find out until they had a form of autism until later in life and whose main issues are social.

On the other side, we have this piece from the Center for Autism & Related Disorders (CARD), that talks about attempting to teach children how to deal with an unknown question -
In a recent study, Ingvarsson and Hollobaugh effectively taught four children with autism spectrum disorders (ASD) to use the phrase “I don’t know, please tell me” in response to unknown questions. ...
Two of the participants quickly learned the verbal response and were able to generalize the response across various questions. The other two participants required implementation of individualized behavioral techniques in order to learn and generalize the response.
You are reading it right, there are children with autism who don't know what to do when asked an unknown question and have to be taught (and those are the ones that can talk).  Some researchers have figured out a way to teach children who would otherwise have no response to an unknown question what to do.  If you are unfamiliar with ABA and how it is used to teach children with autism, let me just say that this is a little bit of a feat.

The thing that jumps out at me is the difference between these two scenarios. One one hand, we have someone who was able to function well enough to graduate high school and make an attempt at college but needed assistance finding and holding a job (which is, sadly, a common problem for a lot of high school graduates in this country).  But on the other hand we have children who don't know how to respond to a simple question and need to be taught a canned response.

Both would have autism but both are extremely different from each other.

And yet, one of these groups feels the need to speak on the behalf of the other and say what they do and don't need. One of these groups feels they have the right to challenge what parents are attempting to do to help their children.

So the next time you read something about autism, just remember - we aren't all talking about the same autism. Your form of autism and what you need might be quite different than what my children need.

Saturday, July 10, 2010

Left Brain Right Brain : The Bullies On Bullying

Over at Left Brain Right Brain, Sullivan has gripping post about what constitutes a blogger "bully".

The main event that is he is talking about is a rather minor one where an individual, Rebecca Fisher, attempted to get an event with Andrew Wakefield canceled. It is hard to say what really happened, but there is no doubt that Ms Fisher did contact the hotel hosting the event and did attempt to pressure them into canceling it. Whether you call that being a "bully" or not depends on your definition of the word.

Of course Sullivan also wrote about the outrage over the recent attacks against Dr. David Gorski, aka Orac, aka smearblogger extraordinaire. For those of you who don't know, the crew at Age of Autism attempted to get the good doctor in trouble at work for failing to disclose possible financial conflicts of interest. While I don't condone the sort of behavior, I can't help feeling that it is somehow poetic justice. Using his alias Orac, Dr Gorski has launched many, many, many, many, many, many personal attacks against other people and has smeared other doctor's reputations. His writing is littered with insults against his opponents, belittling their ideas and impugning their character. Or in other words, Dr Gorski is one of the bigger bullies out there.

Finally we have the subpoena against blogger Kathleen Seidel. This is the same Ms Seidel who is involved in the OSR #1 controversy and wrote to the university that Dr. Haley is associated with and attempted to get him into trouble. Wait, isn't it "wrong" to do this? It certainly was, according to Sullivan, when this happened to Dr Gorski, so I have to wonder what makes Ms Seidel's actions different.

But the thing that bothered me most about the entire post was the shear audacity it takes for LBRB to talk about bullying with a straight face. LBRB is known to harbor notorious bullies, such as Clay Adams, and the comment section on the site is filled with attacks against those who don't drink the kool-aid. Back before they started censoring my comments, I was the target of many attacks and bullying attempts (well, I say target but I mainly just laughed at the attempts).

And lets not forget that the site itself also engages in bullying. There have been a quite a few incidents like the one last year where LBRB ran an article featuring the actions of an anonymous stalker. This anonymous stalker had, well, stalked a mother online and then wrote a lengthy article belittling her attempts to help her child who has autism. It that isn't bullying, then I don't know what is.

Bullies don't get to complain when their victims fight back.

Thursday, July 8, 2010

The Rhetoric about the Pertussis Epidemic

A few weeks ago, an epidemic of whooping cough (Pertussis) was declared in California. As of June 30th, five infants have died and a total of 1,337 cases have been confirmed. The majority of these cases (89%) have been in infants less than six months old. As the number of cases is well over the number of cases that had been seen at this time last year in California (258), an epidemic was declared and health authorities are actively trying to encourage vaccination in an effort to curtail the spread.

First let me say that the death or illness of any child, especially when it could have been prevented, is a tragedy and my heart goes out to those families that have been affected.

I would normally not write about a subject like this because I feel it is crass to talk about a family's tragedy.  However, there are certain other parties who don't seem to feel the same and are using this epidemic to score rhetorical points against the so-called anti-vax movement. Some of these people are suggesting that the deaths of the infants are because of the fear of vaccines while others are just suggesting that the current epidemic was worsened by this movement.

I think that using this outbreak to further your propaganda is quite simply wrong, especially when you don't even bother to get the facts correct.  So, to set the record straight, I wanted to point out a few simple things.

According to the CDC, pertussis outbreaks follow a cyclical pattern with larger peaks happening every three to five years. In general, the number of cases of pertussis have been on the rise since the 1980s  and outbreaks like this are not uncommon. The last peak was in 2005 when approximately 25,000 cases were reported in the US and 3,000 cases in California. As of June 2005, there were 1,261 cases in California which means the current outbreak is just sightly ahead of 2005.

The majority of the people who are getting pertussis this time are too young to have received the vaccine or to be fully vaccinated. Or to put this bluntly, the majority of the cases were not directly caused by parents refusing to vaccinate their children.  In children old enough to get the vaccine, the rate of vaccination in California is high, somewhere north of 95%.

That means that the problem is the people surrounding these very young children, these are the ones that are passing the illness to them. When there is a population that cannot get a vaccine for one reason or another, the goal is to vaccinate enough other people around them to prevent the illness from spreading - this is called herd immunity. This is an area where we will have to wait for data from CDC to be certain of what is going on, but I can make a few educated guesses.

First, the current vaccine does not provide long-lasting protection as the immunity gained from vaccines gradually fades over 6 to 10 years. This means that the majority of teenagers and adults do not have protection against pertussis making these populations the perfect staging ground.  And in fact, the majority of the cases over the past years have been centered in these groups and there is also some evidence that pertussis actively circulates in these populations in a milder form that might not be as readily noticed.

Second, according to the CDC, the current vaccine might not provide as effective as older vaccines were at providing immunity. To further complicate matters, the pertussis bacteria might be mutating into forms that are not covered by the existing vaccine.  There is a new version of the vaccine that was approved earlier this year that might help this situation.

Third, there are some hints that this outbreak is mostly impacting a population that, for social reasons, might not have as good vaccine coverage as would be expected.

When you put these facts together you are left with an illness that is increasing and has regular outbreaks and a vaccine that does not provide lasting immunity while at the same time loosing effectiveness in the cases that it does cover. I don't think it takes a genius to see what is happening here and it isn't that pesky "anti-vax" movement.

But, if you live in California and are around young children or other vulnerable populations and have not had a recent vaccination against whooping cough, now might be a good time to visit your doctor.