Tuesday, April 30, 2019

The Concept of Cure and prevention divides the autism community: It should not have to.

Neurodiversity has completely taken over all facets of the autism discourse.  Autism speaks reversed itself saying they will no longer look for a cure or prevention of autism.  They appointed two neurodiversity proponents alleging to have autism to their board of directors.  One has said that autism is a superpower.  The other has said that autism is not a disability, but a strength.  The Simons Foundation's newsletter, Spectrum routinely publishes articles from some of the most hardcore neurodiversity proponents such as Julia Bascom, Shannon Rosa and Sara Luterman.  The U.S. Government no longer will combat autism and has appointed seven neurodiversity proponents as public members, six of them identifying as being on the autism spectrum.  As far as I know, they've appointed one anti-vaxxer, one or two parents who support the concept of prevention and cure and zero pro-cure, pro-treatment autistics, though two applied to be on the IACC and were turned down.  They also have multibillionaire George Soros on their side who has given over $300,000 to the autistic self advocacy network, the premiere neurodiversity organization in the United States.

Last, but as far as this post goes, not least, they have completely taken over the International Society of Autism Research.  Their president is Simon Baron-Cohen, a neurodiversity proponent.  On their board of directors is well-known neurodiversity proponent John Elder Robison who has recently called for an adult prevalence study and should be in the Guiness Book of World Records for writing a journal article with the most factual errors of all time.  Autism Research, INSAR's journal, published his article.

However, this is not enough for them.  In a redux of SB's BS, Simon Baron Cohen has published an article attempting to make a case for why neurodiversity is a legitimate philosophy and should not be controversial He gives a rehash of all of his old and ignorant talking points.

In trying to say that the autistic brain is a variation of normal, he again neglects to cite the findings of gliosis in Bailey's postmortem studies.   This is a response of glial cells to damage of neuronal cells, clearly a pathology and not just a different form of brain wiring.  He neglects to cite the work of Wegiel which finds heterotopias in four autistic brains and none of the controls.  This is where germinal cells fail to migrate to their proper spots during fetal development, causing seizures and other brain abnormalities.  It is no less of a normal variation than an ectopic pregnancy or inguinal hernia.

He goes on to talk about the superiority of autistics on the block design subtest of the Wechsler as showing autism to be a variation of normal, but neglects to mention the subpar scores on the comprehension subtest which results in autistics having severe social judgment impairments and getting into trouble in social situations.

In his statements about genetic variations, he neglects to discuss the research showing autism in a number of cases is the result of de novo mutations, such as the research of Jonathan Sebat demonstrates.  He neglects to discuss the evidence for environmental factors in autism such as the California twin studies and the work of Tanai in Japan showing much larger concordance in fraternal twins than in non twin siblings, even though they have the same genetic makeup. Not to mention thalidomide and various types of birth complications which have been found in association with autism.

However, these are old talking points of SB's BS and I've commented on them before

What's new is that he says the concept of neurodiversity should not be controversial, but apparently the concepts of curing autism and prevention should be.  This man who attempts to be the voice of reason  has stated  anyone who wants to cure and prevent autism is no different than a nazi or a member of the Ku Klux Klan,  Ergo, cure and prevention are controversial positions and neurodiversity is a benign thought that should have no controversy whatsoever.

He has admitted there are autistic people who can't speak and have other serious impairments.  Yet, the neurodiversity movement he emboldens has constantly insulted parents who want cures for their children or to prevent other children from going through the hell they have gone through.

Why should wanting to cure self-injurious behavior, seizures, etc. be controversial?

Even a cure for more mild problems such as the one's I've had with holding down jobs, fine motor problems, celibacy, etc is controversial?  Why should this be so?

Perhaps it's time to rethink what should be controversial and what shouldn't be in the field of autism.

Friday, April 19, 2019

a pet peeve of mine

There's a pet peeve of mine that I think of from time to time, but an urge to vent about this has come to me.  I tweeted a few tweets about it on twitter, but the character limitation and format of twitter really limit my writing about this. Facebook is another option.  But I'm pretty pissed off at FB for deleting a couple of my posts and banning my blog, so not sure I'm ever going to post anything on there again.

For this reason, I've decided to write a blog post on the subject, though I've not been blogging as much in recent years as in the past.

I'm fed up with people giving me easy/pat suggestions for what I can do to help my disability.

The first two that I've heard the most frequently I've written about previously. For those who aren't inclined to read the whole post, I'll recap.

 1. Because you get fired, tell employers about your disability. I tried it once, didn't help, I got fired anyhow.  I'm retired now, highly improbable I'll ever work again, so perhaps it's moot now, but the annoyance of having to hear this repeatedly has not gone away.

2. Because you can't find a girlfriend, find an autistic girlfriend.  No place to find one and I sure don't want a female ND. and contrary to ND mythology, there is about a 4:1 ratio of male autistics to females.  So if the girls were interested the odds would be good for them, but they're not because the goods are odd. 

In the above-linked post, I wrote that I think autism may have given me the savant skill of prophecy because I can so easily predict what people will say in response to these issues.

There are others I've heard, but not with the same frequency.

3. Try therapy.  Had 18 years of it.  Been there, done that.

4. get social skills training to enable you to find a girlfriend.  Problem is more complex than that, too difficult to explain in this blog post.

5. Go to church.  One person has told me an autistic boy whose parents have taken him to her church is doing a lot better now.  No thanks, I went to church with some people one time, took communion and it would appear I drank to my own damnation. 

6. Take SSRI drugs.  I did.  Two different ones, Prozac and Lexipro, no help there. 

7. Take Elavil to relieve depression.  This was in the mid 80s before SSRI's became available.  I'm depressed because autism has made my life so difficult, not because I have an affective disorder.

8. Go to an autistic social club to meet autistic women (I guess because I have little chance with a normal woman or I'm ill-suited for her).  Meetup shows where groups like this are.  This is a subset of item number two in the two most common suggestions I've heard.  But this means I'd have to go to the Los Angeles chapters of GRASP or ASAN and meet female ND's.  No thanks.

9. How do I expect autistic (ND) girls to like me if I'm going to have these attitudes.  I don't expect ND women to like me and if they don't it's fine with me.

10.  If I weren't such a jerk and did not talk about disgusting things like autistics who smear feces, women would not hate me so much. (this was at least by far the most amusing of the lot)

11. Get a typing tutor program so you can learn how not to make careless errors in data entry.

There are probably a few others, but I can't think of them off the top of my head.  I also think anyone reading this would get the idea by now.

I've lived with this disability for more than 60 years now.  I know what the situation is better than the person looking in, believe me.  I really resent people who know nothing about my life giving me pat advice.  There's really not a whole lot I can do about these problems.  Nothing's going to change the hopelessness of my situation and likely other DD persons who have to live with their disability.

But I know that this won't be the last I ever hear suggestions.  I'm sure I'll continue to hear the same tired old ones.  Especially the first two.  I'll likely hear a few new ones down the line also.  Just something I guess I'm going to have to learn to live with.

Thanks blog readers for allowing me to vent.

Thursday, April 4, 2019

Problems with Adult autism and Prevalence: John Elder Robison to the rescue

Within the autism community, there's a heated debate on whether or not the prevalence of autism has remained stable since Kanner first wrote about the condition in the early 1940s.  A few prevalence studies published between 1966 and 1985 estimated the prevalence at about 1 in 2,500.  Many years later, other studies have estimated a prevalence rate of autism at 1 in 100 or higher.  The latest CDC numbers are 1 in 59.   Some persons believe that the main reason for the increase is greater identification of individuals and change in diagnostic criteria.  Others believe there is some sort of environmental toxin or toxins, driving a dramatic increase in numbers in a short time frame.  There is no consensus on whether or not there are far less autistics born in 1970 and earlier than those born in 1990 and later. 

Autism is usually considered a disorder of childhood.  However, autistics are not Peter Pans who remain children forever.  Those of us with autism grow up into adults.  Assuming there's been a genuine increase in numbers, the huge increase started with people born in 1990 and later.  Many of these individuals are now adults.  Children age out of services provided by the IDEA when they turn 21.  Some state regional centers provide group home funding once the more severe individuals reach adulthood.  There have been published reports of autistics having severe health issues as opposed to the general population as well as much higher rates of suicide.  How can we identify these adults, find out what their issues are and help them?

When Hillary Clinton ran for president in 2016, she proposed doing an adult prevalence study on autism.  

IACC public member John Elder Robison has written a take on this topic.

In short, JER has addressed the problems of health issues and suicide, etc. in autistic adults.  He proposes to spend millions of dollars in taxpayer money doing an adult prevalence study to identify this population and find out what their issues are.

He proposes to combine methodologies of two prominent studies to find the prevalence of autism in adults. First are the reports delivered every two years by the autism and developmental disabilities network monitoring which assesses prevalence in autistic children every two years who are 8 years old at the time the survey is carried out.   The second is a survey carried out by T. Brugha, et. al. that assessed the prevalence of autistic adults (16 years and older) in the UK.  They found a nearly 1% prevalence, which was about the same as had been reported in autistic children at the time.  You can read the survey in its entirety here.

How valid were these two surveys in assessing the prevalence of autism in children and adults respectively?  Will Robison's recommendations help us find a valid adult prevalence?  Do his talking points have any credibility?  I will attempt to answer these questions in this blog post.

On careful scrutiny of Robison's talking points, it seems he's made many factually inaccurate statements.  He appears to have not even read the primary sources of the articles he cites.

Robison states:

Brugha et al. [2011] found very high rates of autism among older adults previously diagnosed with learning disabilities, and they found alarge number of autistic people living in group or institu-tional settings. Neither of thosefindings are surprising.

Actually Brugha et. al found 19 cases out of 7,461 persons surveyed in the first phase of his study in a country of 30 million population.  Based on a statistical analysis, which at best was educated guesswork on his part, he surmised that there were an additional 55 cases on top of the 19 that were assessed using the ADOS to diagnosis their autism that were in the survey.  Most of these had intact intelligence though there were some who responded to the survey by proxy due to being too disabled.  These persons did not live in institutional settings but in regular households.  I realize though JER's standard for "very high" might be different than mine.   

According to Brugha et al. [2011], with our current bestestimates of prevalence, roughly one in 50 men, or onein 75 people of all ages are on the autism spectrum. Thisis consistent with contemporaneous prevalence estimatesfor children, such as the 1 in 56 reported by the CDCsADDM (Autism and Developmental Disabilities Monitor-ing Network)

Actually Brugha found not one in 75, but 98 out of 1000 or slightly less than 1 in 100.  The CDC's 2018 report found  26.6  in 1000 boys or one in 38, rounded to the nearest non-decimal number. /The CDC's number in 2018 was actually 1 in 59 not 1 in 56.  These might be considered minor factual errors, but I feel as an autism public policy advisor at taxpayer expense, Robison should get these figures right. 

He uses the study by Lisa Croen to state that there were only less than one tenth of the adults there should be in that survey.  I don't believe a sample of the general population and a selected sample of people in the Kaiser insurance program is an apples to apples comparison, as there would be selection bias as to who would have this insurance or wouldn't.  Adults outside the Kaiser system might have MediCal  and seek health at other providers or not have insurance of any kind.  Another possibility is that there is not a 1% prevalence or higher in this age group as has been found in children.    

 Robison states: 

 With some autisticadults described as tech geniuses while others require24/7 support for basic living, parents rightly wonder whatthe future holds for their autistic children. We owe it tothem tofind some answer

How can an adult prevalence study predict what the future holds for autistic children?  How will spending taxpayer money in this manner do this? You don't need a multimillion dollar taxpayer financed study to know that the prognosis for most autistic children is very poor.

In conversation with autistic people, I have often beentold that adults deliberately keep their autism diagnosisout of the medical record, to avoidhaving it usedagainst them.Perceived threats include higher lifeinsurance premiums, higher health insurance premiums,and possible denial of professional licenses or even jobs.Those are all valid concerns and suggest there may be agood number of autistic adults who are aware of theircondition but choose tofly under the radar.

John may not be aware of this, but under the health insurance privacy protection act, it's a federal offense for a hospital or doctor to share medical records without someone's consent.  Very few autistic people have children so life insurance would not be a concern.  Because of lobbying from autism speaks, insurance now pays for many autism treatments, but it did not in the past, so it's unlikely an autism diagnosis would result in higher insurance premiums for a pre-existing condition.  This is even less of a concern since the affordable health care act was passed.  Very few autistic people will become eligible for any type of professional licensing.  A prospective employer is unlikely to ask someone for their medical records and again under HIPPA it's illegal for a hospital or insurance company to produce these without the person's consent.  

A few years ago, researchers believed most autistic peoplewere intellectually disabled. That belief was founded on alimited understandingthey only recognized a small part ofthe autism spectrum as we know it today. Now that our sam-ple is larger, we understand that the average IQ of the autisticpopulation is much closer to that of the general population

Actually only 1% of the population has an intellectual disability, whereas probably at least one in three autistic persons has one.  It is probably closer to 40%.  This includes findings from the ADDM surveys that Robison takes such high stock in.  

In addition to the 1% prevalence of adults in the Brugha study just being a guess, this survey has other problems.  It turns out the AQ-20, an abridged version of Simon Baron Cohen's AQ test, was a very poor predictor of who is and who isn't autistic.  The blogger autism jabberwocky wrote about this so it would appear the Brugha survey, admitted by the author himself, has no credibility whatsoever.  

The authors divided their prevalence data into three age groups, stating there was no difference in prevalence between the groups.  But with a sample of only 19 people it does not really have the statistical power to say this.  

It appears John Robison just read portions of the abstract of the study without reading Brugha's work in its entirety.  

John Also wants to use the ADDM reports as a model for his plan to assess adult prevalence.  These reports, published every two years cost the American taxpayers 5 million dollars a year.  The reports only cover a cross section of the entire USA.  They use states such as New Jersey each year, which as a more generous service delivery, providing an incentive for the parents of children to get an autism dx.  This state only has a fraction of the population of the entire USA and thus skews the average.  Just a small percentage of the united states instead of the entire country is used to assess these prevalence numbers.  Also, a significant percentage, maybe as much as 20% in some years of the autism cases are not actually diagnosed.  Rather the epidemiologists who are not trained clinicians and have never even seen the actual 8 year old children rely on health and school records to come to the determination that these children are autistic and provide them as part of the prevalence numbers.  

To me it is worrisome that JER can get articles such as these that pass peer review in journals of questionable quality.  It troubles me that he can carry out his activities at taxpayer expense. 

Another point to ponder is whether or not JER's motivation in making this proposal is to actually produce data that will be of use to service providers and others to help autistic adults.  Hillary Clinton's proposal of an adult prevalence study came after a conference call with ASAN.  The neurodiversity movement has insisted that autism is a natural variation and 100% genetic.  This is despite evidence of studies of fraternal twins showing higher rates of concordance than non twin siblings as well as environmental insults such as thalidomide showing to cause autism.  These argue against an exclusively 100% genetic component.  If a neurodiversity sponsored study found an adult prevalence rate identical to those of children born in 2000 or later, this would certainly bolster their hypothesis.  John has an intimate friendship with Alex Plank and other ND extremists.  If you go on his twitter and look at his tweets and replies, you can see some of the most radical ND proponents who block those who disagree with him are having dialogues with him.  Could this be at least a factor in his desire for an adult prevalence study?     

My own take on an adult prevalence study is that it's like looking for a needle in a haystack.  Adults don't present to special ed schools, clinics etc.  So it's impossible to do the aggressive case finding that the CDC does to find people over the age of 21 who are on the spectrum.  I believe the question on whether or not there are just as many autistics born in 1970 or earlier as opposed to 1990 or later will never be resolved.  I don't believe a valid prevalence study is possible to do on this group.  There is no point in spending American tax dollars on this endeavor that the British did on the Brugha surveys and study. 

Are JER's proposals to spend millions more on taxpayer dollars, based on a model of two different troubling epidemiologic studies worth it?  Is this a person who should be making policy recommendations for autism at taxpayer expense?  Autism's Gadfly does not think so.