Tuesday, August 04, 2015

Surprise! A Meaningful Autism Disorder Study Provides Evidence of Autism's Harsh Realities

Autism is a disorder which, far beyond its core diagnostic criteria, brings with it higher than average medical conditions and psychiatric illnesses.   The health status of adults on the autism spectrum study confirms the harsh realities of autism disorders and should not be ignored or lightly dismissed by academics, mainstream media or professional "self" advocates who, despite their very high functioning levels, insist on burying the harsh realities of the severely autistic, like my son, in the mounds of autism ignorance they dump on the public landscape. As the study indicates autism disorders mean significantly higher than average psychiatric illnesses and medical conditions.  Not much joy to be found in those realities.This study though should be helpful in bringing a much needed dose of autism realities to the  public understanding of autism disorders and the harsh realities that accompany them.

The health status of adults on the autism spectrum

  1. Lisa A Croen1
  2. Ousseny Zerbo1
  3. Yinge Qian1
  4. Maria L Massolo1
  5. Steve Rich2
  6. Stephen Sidney1
  7. Clarissa Kripke3
  1. 1Kaiser Permanente Northern California—Oakland, USA
  2. 2Kaiser Permanente Northern California—Santa Rosa, USA
  3. 3University of California, San Francisco, USA
  1. Lisa A Croen, Division of Research, Kaiser Permanente Northern California—Oakland, 2000 Broadway, Oakland, CA 94612, USA. Email: Lisa.A.Croen@kp.org


Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations.


Roger Kulp said...

Saw this a few weeks ago.Article is behind a paywall.This should come as no surprise,except maybe to both certain members of the neurodiversity commmunity,and the most hardcore of the antivaxers like Anne Daschel,both of whom have their own agendas to push.Both agendas are just as inaccurate in their portrayal of autism,and equally political in their agendas.Both groups are very harmful to autistics,and a "third way" autism movement is desperately needed.

Daschel has been going on for years about how there are no autistics in their 30s,40s,50s and older with the severe medical issues "our kids" have.I have really come to hate that phrase.I have posted my story,in whole or in part,numerous times in the comments to various AoA posts,as have many parents of severely autistic adult children.Adult children with very serious medical issues.None of whom have been able to get the medical help and treatment I have.

None of this seems to phase Ms.Daschel in the least.Either that,or admitting that she was wrong in this,would be admitting she was wrong about there being an "autism epidemic" with severe medical problems.One of the big ideas pushing the antivaccine movement.If there was no "epidemic" of kids starting in the 1990s with autism and complex medical issues,if there were kids with autism and serious medical issues 40,50,60 years ago,then the whole antivax thing crumbles away.

The lies spread by people like Daschel,Bobby Kennedy,Jr.and the rest,are no better than the lies spread by Ari Ne'eman and the neurodiversity movement.That autism is not a medical or biological disorder,but a different way of thinking that only needs to met only with acceptance by society,and accommodations in the workplace.Neurodiversity ignores severe or low functioning autism,the part of the spectrum where the more complex,or more serious medical problems are.

The fact that all health care for autism in the last 25 years or so has been geared towards children is a disgrace.This would not be tolerated with cerebral palsy,muscular dystrophy,or any other disorder.It has been explained to me that one of the big reasons that you do not see older adults with more severe autism and complex medical issues,is that parents like my mother were very rare in the 50s,60s70s,,and early 80s.Parents that went against the advice of doctors,teachers,psychologists,etc to put their children in residential treatment centers.

I have only gotten the help and treatment I have through my own hard work and persistence.Every step of the way,no one has been willing to help me.I feel like the Little Red Hen in the children's story.Starting with getting a new autism diagnosis in 2008.My records of my original diagnosis as a child were destroyed years ago.Then getting a DAN! doctor to throw every test he had at me,and see what stuck.Then following these tests up to where I was able to get a diagnosis of cerebral folate deficiency in 2012,and be the first autistic adult ever seen at Arkansas Children's Hospital,in 2014.I am waiting on results of a Whole Exome Sequencing for suspected mitochondrial disease.

Many,including doctors,have told me there is no one else who has done what I have done.It has only dawned on me recently that I may have been a trail blazer of sorts as far as getting medical treatment for other adults.

Anonymous said...

Wish I could access this study... I wonder how many "medical conditions" are the direct result of the many medications (antipsychotics, and, yes, some AEDs)? The direct result of lack of physical activity? Lack of access to QUALITY care is certainly a problem, but the emphasis is on "quality".

Peter Lloyd-Thomas said...

Following on Roger's point about where are the autistic adults, where are the adults with Down Syndrome? I was shocked to learn that while people with Down Syndrome can live to their 70s today in the US, in 1970 the mean age at death was ten years old. Back then they were all put in iinstitutions and clearly left to rot. It seems that the cause of death was recorded at Down Syndrome. The is no such data for autism because autism is not seen as a cause of death. So its pretty clear that kids put into institutions with autism ended up like those with Down Syndrome. Hence not many old timers with autism in the 1990s and 2000s.

Unknown said...

Autistic adults have the legal right to live in the least restrictive setting. However, the real reason many parents place their autistic adult children isn't because they couldn't care for their adult child anymore, it's because the proper supports and services to care for their children at home (often the least restrictive setting) were ignored, downplayed and denied. Connor is so blessed to have you Harold. You and your wife has dedicated your entire lives to protecting and advocating for your son. Many would've thrown in the towel by now. I salute you and your wife, Harold. You are both amazing, loving and committed parents of an awesome young man.