Thursday, February 20, 2014

16 Years After Conor's Autism Diagnosis: Lots of Conor Joy But No Progress in Autism Research

Yesterday was Conor's 18th birthday. Today is exactly 16 years after his autism diagnosis, received the day after his second birthday and after several months of testing and observation. Conor, now a young man, is still the happy boy that brings joy to his Mom and Dad, along with many serious challenges, challenges that restrict his life. Here in New Brunswick, Canada, some progress was made by a commitment to evidence based intervention by a determined parent advocacy movement. In the big picture though there has been no meaningful progress and in fact there has been very substantial regression.

The regression has occurred with the creation of the Autism Spectrum Disorder diagnostic category in the DSM-5, unifying into one disorder several categories at a time when the incredible variety and heterogeneity of the autism disorders, the "autisms" as US NIMH Director Dr. Tom Insel has described these conditions should be crystal clear.  At the same time the masterminds who crafted the new DSM-5 ASD still describe groups of disorders such as "autism" intellectual disability and epileptic seizures as co-morbid conditions implying that they are separate conditions appearing together coincidentally when in fact their frequent appearance together clearly indicates they are part of one disorder, condition or subset of symptoms which most likely share common causal factors.  

Whatever way one looks at it autism research will be set back by creating a different condition to compare to earlier versions. The autism research community really has few successes, since Lovaas and those who confirmed and expanded on his work, and few causal factors have been identified with certainty.  Now the autism research community that has failed so miserably will face an additional hurdle ... comparing apples to oranges ... DSM-5 autism cases to DSM-IV cases and adjusting their results to accommodate the differences.  Good luck with that.

DSM-IV or DSM-5 the autism research community still clings tenaciously to the belief that with respect to the autisms "it's gotta be genetic".  While lip service is paid to the concept that autism results from the interaction of genetic and environmental factors research dollars still flow overwhelmingly to genetic based autism research.  Calls for an environmental autism research strategy by respected authorities  like Grandjean, Landrigan and Birnbaum are largely ignored.

Convenience and the false belief in a "pure" autism also continue to strip autism research of any value.  Autism research subjects tend to be high functioning autistic persons who are easier to work with in conducting studies. The exclusion of more challenging lower functioning participants from autism studies is justified by the non evidence based belief in a pure autism.

The truth is autism research has produced nothing of significant value in the 16 years since my son's autism diagnosis 16 years ago today.  The autism research community failed persons with autism and their parents and families when they twiddled their thumbs while the cold mothers fantasy was allowed to prevail and cause harm to all touched by autism. Since then there has been many dollars spent on autism research with precious few results to show.

I am being realistic about the state of autism research over the last 16 years just as I am being realistic when I describe the great joy that our severely autistic son Conor has added to our lives.  To Conor I say thanks Buddy.  To the autism research community I say get your acts together, start producing some results. 

Conor at age 2 loved his cake and icing and that is still true today.  He was 
and remains a happy, joyful blessing in our lives despite the many 
serious challenges that his autism disorder and "co-morbid"
 intellectual disability and epileptic seizures present. 


Roger Kulp said...

It looks like this post was written while you were very angry.It's kind of hard to follow.But here a few random thoughts.

Dr.Insel has spoken out against the DSM-V,as strongly as he can given his position.Clearly he thinks there needs to be a better way to describe,and sort out the different types and severity levels of autism.

I hope you read the blogs you link to every day.Much of the time I come here every day,is to look at the blogs you have under favorites.The blogs Questioning Answers,and asdresearchinitiative in particular.You may notice I comment frequently at Questioning Answers.A frequent subject at both of these blogs,are newly discovered types of autism.Many involve metabolic diseases,like today's post about branched-chain keto-acid dehydrogenase complex diseases.Most of this in connection to autism was not known eighteen years ago,not even the connection to mitochondrial disease.

There have been a few hundred individual metabolic disorders found to cause autism.About two dozen associated with cerebral folate deficiency alone.
Most either were not known to exist or not known to cause autism twenty years ago.

I am sure most autism parents have never met anybody,adult or child,who has been diagnosed with one of these metabolic forms of autism.But since signs of one of these diseases were found in the very first group of tests ever done on me,I can't be sure if these diseases are truly rare,or just not tested for.

I also have never really learned if most children regress only once,or regress over and over again,like those of us with metabolic based autism do.

Being able to control autism with medication and diet is the most incredible thing in the world.Even if it means you still have many of the medical problems.I only wish more autism families could experience it as well.

The same goes for autism related to diseases like PANDAS that can be treated with IVIG.

These diseases may only represent a small portion of general autism population,but it is wrong to say no advances have been made.

Unknown said...

Thanks for you comment Roger. I always appreciate your input on these issues. I am not angry but I am frustrated and disappointed, very disappointed, with the lack of progress in autism research. If the same attitudes and approaches continue there will be little or no progress for the next 15 years. Even accepting your summary of the progress to date I find it, with respect, to be very minimal.

I read Questioning Answers and refer others to read it and the comments of Paul Whitely who I find to be exceptionally well informed and courteous. When autism, a medical condition or group of conditions, is reinvented every 15 years, when potential environmental factors and triggers are ignored by the mass of autism researchers, when "autism" research continues, as it has for decades, to focus on the high functioning end of the autism spectrum of disorderS (plural) and the world believes that the results of such research actually applies across the entire autism spectrum it is difficult and I believe irrational to think anything different will occur in the next 15 years.

I believe a reassessment and course correction is needed with respect to autism research ... so that progress, real progress can be made.

farmwifetwo said...

If you read the books on the V by those that made the IV they admit they created a false epidemic of autism, adhd and child bipolar. Now the V is creating other "epidemics" and they are changing these to reflect better the actual symptoms.

It is not a science book.. not even close.. and the V, is worse than the IV at being able to dx anyone with anything.

There are a number of studies out there and yes, genetics are in some, IBS (gut bacteria) is others, and drugs in others... all 3 types are being done in Ontario. I don't know what's being done, elsewhere.

I'm pleased they are trying to correct their mistake and I "swatted" a child psych yesterday about "curing".... was fun :)Dang, over educatedThis concept that it requires a brain transplant and my eldest's personality has changed over the years (duh... no it hasn't) is annoying especially from those that should know better.

Anonymous said...

Happy birthday Conor.
I feel that the DSM V is intended as a tool to determine who gets government or insurance resources.

Unknown said...

Another problem is a 'culture' has developed that actively fights against research and possibly even a cure. Looking around online just for a bit and you'll see if anyone even mentions 'cure' and 'autism', they get treated like dirt and possibly even receive death threats.

In all truth, this is the FIRST blog after looking for more than a year that has a reasonable stance and has been around for a while. You have every right to be frustrated and very disappointed. You have to keep with a disabled child while having to deal with people ready to leap down your throat for considering him disabled.

I can't think of any other mental illness in the world that harbors that kind of insanity. It's a disability, but shouldn't be treated like one. They act different but don't you dare even think they're different. We want all the treatments for having a mental illness / disability but don't you dare use those words.

It just doesn't make any sense.