Monday, June 15, 2009

Where are all those darn adults with autism?

Looking at the age of autism blog, I see that Simon Baron Cohen, that paragon of virtue of scientific rigor, is at it again. He is calling for a study on the prevalence of autism in adults stating:
I agree we need a good prevalence study of ADULTS with autism spectrum conditions, and I haven't seen a study like this!

Anne Dachel, the author of the piece featuring SBC, makes the claim that because no one has done a prevalence study showing similar numbers of adult autistics with the 1/150 prevalence that has been cited for children in the CDC's two year old study that this somehow proves that this increase is real-that it was caused by vaccines or something else in the environment. If this environmental trigger could be identified future cases of most autism could be prevented. This could even lead to a cure for autism. There are a number of problems with this argument but since AoA has a well-known reputation for censoring comments that are not in agreement with their rather narrow view of autism, I will write a blog post here instead.

Actually I agree on the need for a good study on this issue IF FEASIBLE (with the emphasis being on if feasible) some time ago I wrote an article on this subject. However, I had another reason for trying to find the so called "hidden horde" of autistic adults besides from settling the question of whether or not there has been a true increase in autism prevalence. One other reason is that if we could locate autism in older people (let's say people over the age of 70) then we could perhaps persuade them to will their brains to science so postmortem autopsies could be done. To date, there have probably been less than three dozen autistic brains autopsied or at least studies involving cell counts in various nuclei or whether an autistic amygdala or cerebellum is different from an age and sex matched control have been few and far between. There are not really any adequate animal models of autism since animals can't speak or interact socially the way humans can. Also, since animals can't handwrite we can't know whether or not they have fine motor coordination problems similar to what I have. MRI's and fMRI's are very limited given the current state of the art in what they can resolve. Also, studies involving fMRI's and event related potentials of the type that Dr. Lindsay Oberman and company do on mu wave suppression are quite limited in that they can only be done on a subset of persons with autism, usually high functioning males as the lower functioning autistics would not sit still for the studies and artifacts would confound the readings so that valid results would not be able to be obtained. It is quite possible that post mortem autopsies are our 'ace in the hole'. This could likely help us uncover the etiology of autism. For example we know a great deal about the etiology of Parkinson's disease in part because persons with Parkinson's die from the disease so postmortem tissue is available for autopsy.

I met pediatric neurologist Margaret Bauman and asked her why we did not know as much about the etiology of autism as that of Parkinson's and If enough brains for autopsy were available would it be possible to have that same knowledge for autism. She agreed with me and explained that a large part of the problem was that persons with autism lived out their lives. In fact the persons first diagnosed by Leo Kanner are probably about 75 years old now, so given current life expectancies in the USA, we are not going to be able to find persons whose brains are available for postmortem autopsies very easily. If it were possible to find older people with autism in the same prevalence numbers that we have for children, this might be a possible solution to this dead end street for research.

There is a problem with this approach here which I will outline.

First of all, it could be argued that the burden of proof should be on those people who claim there is an epidemic of autism and in fact predicate various biomed treatments on just that premise. Not to mention the AoA folks and others have urged the government to spend money on "fishing expeditions" to prove that vaccines cause autism with study after study producing the same negative results. Perhaps they can show somehow that these adults with autism in the same prevalence numbers do not exist.

In fact, Mark Blaxill, one of the staffers at AoA, has attempted to do just that. He has cited two different studies. One by Nylander that was done in Sweden in which searches of psychiatric hospitals were done and the adults with autism were not found. Another study was done by someone named Bard in South Dakota in which a group of persons with autism was followed into adulthood and then upon looking for more persons with autism it was found that they missed only one or two persons with autism. Blaxill claims that these two studies are irrefutable proof that there is no "hidden horde" of adult autistics.

Last year at the ASA national conference I heard a speech by Bryan Jepson, practitioner at The Thoughtful House in Texas which uses various biomed treatments. Dr. Jepson is also author of the book Changing the Course of autism. He had claimed in his lecture that there were several studies done in the USA that had tried to find autism in adults with the same numbers as children, but none of them had done so. I was fairly certain that no study besides the Bard study had ever attempted to answer such a question (excluding the Nylander study which was done in Sweden) so after the lecture I asked Dr. Jepson which studies they were. He immediately clammed up and basically said he was not sure but the studies had been done and that Mark Blaxill was a good person to consult on the matter. So basically the attempts to study this question have been very limited. There is a probable reason for this which I will go into later.

First, there are some problems with Blaxill's conclusions. When I was in email correspondence with Blaxill five and a half years ago he cited these two studies to me. Blaxill also stated that one point of evidence for an autism epidemic was that the increases in autism were geographically specific to various parts of the world. There had only been increased prevalence in the USA and the UK but not other geographies. This would be inconsistent with using a study done in Sweden since it is the geography that Blaxill is claiming is irrelevant. One also wonders what the probability is of an autistic adult presenting at a psychiatric hospital especially if they are higher functioning. One can look for gold in a salt mine but not have much chance of finding it. So I don't think the Nylander study really proves anything. The Bard study is also problematic in that it only covered a very rural part of South Dakota. Looking for high autism rates in rural rather than urban areas has certainly been shown to be problematic. This is borne out by the fact that the oft-cited 1/150 CDC study was an average between various parts of the USA. The rates in New Jersey were much higher than the rates in Alabama. Also, the various California reports have shown much higher rates of autism in Los Angeles than in rural areas of Northern California. From this I conclude the question of whether or not autism exists in the same rates in adults as it does in people born in the late 1980s and later has never really been studied satisfactorily at all.

One wonders about the feasibility of doing these sort of studies. Most have heard the old saw about looking for a needle in a haystack. This analogy might be applicable here. In the two CDC studies done showing high prevalences of autism in children in certain ages one reason such high prevalence rates were found was that the CDC has legal power to force people to comply with surveys. Most of the children found in the study with the average 1/150 prevalence were found in special education settings. Because of the IDEA law, special education students will be motivated to get an autism diagnosis because of services, therefore this makes children much easier to find. The California report seems to show that persons with autism are becoming much higher functioning as measured by IQ tests with the percentage of those with retardation and seizure disorders decreasing greatly. I seem to remember Fombonne has found similar things in his studies (someone correct me if I am wrong).

Persons over the age of 22 are aged out of the special ed services and after that point are either considered as recovered or as write-offs. So, where are these adults going to be found? How can Baron-Cohen or any other autism researcher do such a study and find the adults in the same number. Particularly the many higher functioning autistics and those with Asperger's syndrome and mild PDD's who were counted as "autistic" in the CDC prevalence studies? They will certainly not present to special ed settings as most of the CDC's 1/150 did. They will not likely be found in group homes at the same rate as in special ed settings. Since there was no IDEA when some of them were in school, they might not be able to be found or not found. So, it might be difficult to prove or disprove the hypothesis that autistic adults don't exist in the same number as children. Also, since they are not eligible for special education services, there won't be a lobby for federal funding of such a study and the CDC might not be motivated to do it. This does not mean they are not out there and that they don't exist. I know that I exist. I know that my friend Russell who I knew as a kid existed. I know that the kids I was in special ed with in the early 1960s, some of whom today would likely be diagnosed as autistic existed.

I say the onus to prove that these people exist should not be on me. It should be on Anne Dachel, Mark Blaxill and others who think the way they do to prove that they don't exist. I wish them luck in that regard, but for the above reasons I don't think they will ever be able to deliver.

On the other hand if anyone does have an idea of how these people could be located so we could persuade them to will their brains to science so the autopsies that might prove to be so useful could be done I would certainly welcome those.


farmwifetwo said...

I doubt you will find as many adults with autism in the general population as you do children at the age of 2, which wouldn't surprise me is where the 1:150 number comes from.

A diagnosis is for one thing and one thing only - SERVICES - (or in some cases thinking it's cool to join the new "club" but I digress). There are probably MANY autistics/apsies out there that no longer require the diagnosis to live independant lives and have set it aside for personal/insurance/employment reasons. There are probably others that have no idea they have or had the dx in the first place. How many people have you heard say "I had difficulty in school", "I spoke late", "I.....".


Foresam said...

Now that the APA has plans to lump all types of autism under the heading PDD, the phoney autistics who claim to have Asperger's will meet the critieria and the hidden horde will be found. Of course, nobody at AOA is the least bit interested in this because their mission is to waste everyone's time demanding studies so they can help Pharma sweep the low functioning autistics under the table.

Roger Kulp said...

That isn't true of course. Autism isn't some medical mystery that's always been around but we just haven't been able to get a handle on.

Where are all the autistic adults who were missed in the past--in the days before all the better diagnosing?

Show us the autistic kids from the 1980's who are now the autistic adults in their twenties and thirties at the same rate as children with autism today. Where are the forty, fifty, and sixty year olds with autism at a rate of one in every 150?

What are they doing?
No, autistic children haven't always been with us or called something else any more than the toxins that are causing this environmental neurological disorder have always been with us in such great amounts.

We don't exist Johnathan.

jonathan said...

Nope, Roger, I guess we are a figment of someone's imagination *I am a computer program, mumble*.

Roger Kulp said...

Geez farmwifetwo,I thought you knew better than to sink into the stereotype/trap of "all adults are aspies who can live independently". I'm sure that would come as a great shock to my 80 year old mother who I still have to live with.Tell her that when I am going through an especially severe bout of head banging,and only able to make unintelligible mumbling sounds.

But you do have a point about services.I might not have agreed to have my autism reevaluated last year,had it not been to get a diagnosis for mitochondrial disease.
When I was reevaluated,I had to start a fight with people at a hospital,who thought my autism was so severe,that I needed to go into a home.I have a lot that I would lose if I did,that would bring my quality of life to zero.

I have been following some of what is happening with the DSM-V,too Foresam.We will need to wait and see,if aspies are indeed no longer classified as having a form of autism.If this will,indeed be the case,it will be a great day for the truly autistic,and will give neurodiversity the discrediting it has needed from day one.

Then the fun starts.If aspies are removed from the spectrum,does that mean that those,like myself,who have all of the symptoms of autistic disorder (LFA),except for intellectual disability/ retardation,will be considered as having the "mildest" form of the disease?If aspies are factored out,how would this change the "epidemic" numbers?

I don't think there has been an adequate effort to take a census of all autistic adults.Especially those in group homes,institutions ,and living with parents.I think if we did,the numbers would shock some

Perhaps Professor Baron Cohen ought to consider starting such a program.

I don't see any effort by AoA to "sweep the low functioning autistics under the table".They don't really seem to care much about low VS high functioning autism.They seem to be too busy saying everybody is a shill of big pharma if they don't admit all autism is caused by thimerosol.

They do hate neurodiversity,and don't believe autism is a mental illness.That's two points in their favor.

Foresam said...

AOA came out in support of the high priestess of Neurodiversity last year. They use lots of weasel words and delete comments from people who write the truth about the Neuronitwits.
They allow Kirby to mangle the truth and do nothing but waste time.

Jake Crosby said...

I'm sorry, but I'm afraid the burden of proof that the proportion of adults with autism are the same as they are for children is on those making such a claim, no matter how difficult it supposedly would be. I'm 20, and I have not seen anything that suggests that there is even an equivalently high prevalence of autistic people my age, much less older populations.

Stephanie Lynn Keil said...

Baron-Cohen will just go to some engineering school for his "proof" of autistic adults.

And I agree with farmwifetwo, a diagnosis is useful only for services. I recently saw a psychiatrist who decided to label me with Asperger's because with my autism label no one would treat me. AS has a much better prognosis and medical professionals are more receptive to it.

I might actually get help now that I have an AS label. I have classic autism but I keep getting put in the "hopeless" pile with that label. If I have to have an AS label to get help than I'll take it.

Foresam said...

Will they treat you with a behaviorist and a witch doctor or will they try a medical approach?

Stephanie Lynn Keil said...

Probably a combination of both: behavioral stuff and medication. I don't really know yet.