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

Abstract

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.

Sebastien's Sad and Scary Adult Autism Reality in Moncton, New Brunswick

When autistic persons in New Brunswick turn 21 particularly severely autistic adults services many services will no longer be available. For severely autistic adults adulthood can be bleak, sad and scary. This is Sebastien's story, a severely autistic 21 year old from Moncton, New Brunswick ... as told by his obviously heartbroken and scared mother Lise.

Severe Autism With Intellectual Disability And Epilepsy Can Be Tough But It's Still a Wonderful World

My Son Conor Wore The Blue on World Autism Awareness Day

I understand some of the criticisms of the day and of thinking that

wearing a color in itself creates autism awareness but as long as people 

raise real autism awareness of the challenges of autism disorders and  the related 

conditions from which so many suffer including self injurious behavior, intellectual disability, epilepsy 

and depression;  that's all I look for and it is what I try to do  365 days a year.

Caring for, advocating for, fighting for my son with severe autism disorder, intellectual disability, tonic clonic seizures and life threatening adverse reactions to an ever changing seizure meds scheme will not bring me down. My son is worth every minute of my time and effort and at the end of each day I believe its a wonderful world and will do my best tomorrow to help my Conor enjoy it as much as I do.

Joy of Conor 2014

I will not pretend, I will never pretend, that autism is just a different way of thinking.  Heather and I love our son too much to lie to the world about the nature of his autism realities, his severe autism, intellectual disability and epileptic seizures.  Like many parents of autistic children I believe it is in his best interest that the world knows the realities  of the complex disorder he endures and that often causes him to suffer and puts his life at risk.  I can face his autism realistically while appreciating every ounce of the joy he himself  brings to our lives. I can marvel at his ability to laugh and hug and enjoy life even though I often see him in pain.  

Conor himself enjoys life and brings us great joy  and with his mother I will always try to return that joy.   I will fight those who misrepresent the disorder, and the at times very harsh symptoms, from which he suffers,  I will NOT back down and .... I will enjoy every bit of the great joy he brings us every day.

Here are some 2014  snap shots of the joy we call Conor.

New Jersey Dad: "Reality Of Autism Is Often Very Grim"

I chose the name of my email account "AutismRealityNB@gmail.com" because, from my perspective, the harsh realities of autism disorders are usually ignored or worse,  intentionally misrepresented, by the mainstream media, autism awareness organizations, some high functioning autism "self"advocates and even some parents and autism professionals.  An online friend of mine who shares similar perspectives, Roger Kulp, shared an article on my Facebook timeline yesterday which surprised me because it was a commentary published in the New Jersey Courier-Post which presented a realistic view of some of the harsher realities faced by some with autism disorders and their families.

James Terminiello is the father of a 26 year old autistic son.  His commentary, Reality of autism is often very grim,  describes in detail many of the harsher realities faced by those with autism disorders and their families and other caregivers. Terminiello pulls no punches and will quite possibly incur the wrath of those who wish to paint autism as a pretty picture of alternative thinking and unusual genius:

"In  the world of autism, the autistic who pens short stories, designs bicycles, plays a mean piano or builds his own advocacy website gets the lion's share of media attention. And it has gotten out of hand. As a result, in the public eye, what was once regarded as a future-annihilating, invincible condition has become just a quirky little detour on the merry road to success.

Very nice and very, very untrue."

I  will not re-post  Terminiello's entire commentary here but I strongly encourage anyone who wants a realistic view of autism disorder realities to read it on the Courier-Post. And the next time you read a feel good story about the wonders and accomplishments of the more fortunate with autism remember there are many, many more whose lives, and the lives of their families and caregivers are actually impaired, restricted and shortened by autism disorders.

Canada's Autism Awareness Month? Not Much Awareness Going On ... Once Again

October, for what its worth, is Autism Awareness Month in Canada.   You will probably see performances by persons with Asperger's or high functioning Autism.  There will be wonderful success stories and accomplishments shared to give parents hope, in many cases false hope, about their child's future. 

There will be little mention, if any, of the persons who suffer from severe, low functioning Autism Spectrum Disorder.  There will probably be little about such serious issues as sensory challenges, self injurious behaviors, meltdown, wandering resulting in injury and death, seizures and other challenges common to persons with autism disorders.   You probably will not be told that the World Health Organization estimates that approximately 50% of persons with an autism disorder also have an intellectual disability. Nor will you learn that approximately 40% of those on the low functioning, severe end of the autism spectrum will also suffer from epileptic seizures.

2 sides of Conor: his joyful personality and his autism disorder

Above Conor and Mom enjoy a walk at Halls Harbour Nova Scotia

Below Conor engages abruptly in self injurious behavior hitting his head

You will probably see lots of walks and parades and fun events "to support autism" whatever that means. There will be lots of feel good stories but you probably won't even hear that autism is ...... gasp ..... a disorder, a neurological disorder.

Autism awareness in Canada, like the US April version, is little more than a month of feel good cliches and buzz words about the joys of autism and stories.  There will probably be few mentions of harsh realities like the information provided in the 2007 report of the American Academy of Pediatrics,  Management of Children With Autism Spectrum Disorders:

Associated Morbidity and Mortality

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs,^89–91 and available data suggest that mortality is increased as well (standardized mortality ratio: 2.4–2.6).^92,93 The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy. Cases of suicide in higher-functioning individuals have been reported.⁶

^{Others may do and say as they wish about autism and pretend their child's autism is a  blessing. I find great joy in my son every day and love him dearly.  I love him too much to pretend that he does not suffer from his severe autism disorder, intellectual challenges and seizures.  I love him too much to hide his harsh realities under a blanket of feel good autism "awareness" cliches.} 

Joel Rubinoff's Angry, Ill Informed, Misleading Autism Rhetoric

Conor Doherty on World Autism Awareness Day 2014,  as I tried to take a "selfie" of the two of us wearing blue, gave his old Dad an unexpected hug. 

As in this pic, Conor brings us great joy but his autism is a disorder 

which restricts his life and causes him harm. 

Joel Rubinoff father of a high functioning, smart autistic son is angry  and he is using his position as an arts and entertainment columnist to tell Canadians that parents and organizations who disagree with his feel good views of autism need "attitude adjustments".  In Joel Rubinoff's ill informed view of autism  people should not discuss autism like it is a ... disorder.  They should not talk about any of the serious, sometimes harmful, sometimes deadly deficits that actually restrict the lives of many with autism disorders, a group of neurological disorders marked by heterogeneity, complexity and variation. (See for example, Lynn Waterhouse, Rethinking Autism: Variation and Complexity). 

Autism for Joel Rubinoff is Temple Grandin, Darryl Hannah, Einstein, Mozart, Bill Gates and Susan Boyle.  Forget for the moment that Einstein and Mozart lived and died before autism was a recognized disorder and that any speculation that they were autistic is exactly that ... speculation.  Rubinoff, like any of the autism is beautiful crowd that have fought against recognizing the harsher realities faced by many on the autism spectrum of disorders, likes to equate his son's autism with very smart, talented people.  Rubinoff's son is, by Rubinoff's evidence, very intelligent and  high functioning with good communication skills:

"But did you know that half way through senior kindergarten, he's already learning to read. That he can do puzzles with almost 100 pieces. That he's fascinated with space and science, and can name all the planets. That if you tell him it's Hot Dog Day at school he'll squeal with delight. "I'm so excited, Dad — I can't wait!"

Joel Rubinoff's son, like some on the high functioning end of the autism spectrum of disorders is very intelligent.  I am happy for him and his son.  My son, now 18 lives on the severe end of the autism spectrum of disorders.  He has an intellectual disability and suffers from seizures, like many on that severe end of the autism spectrum.  My son brings us, and everyone who has worked with him, great joy but his disorder limits his life severely in the ways described by the autism advocates that Rubinoff despises. 

Mr. Rubinoff appears to be unaware of sources like the World Health Organization which, in September 2013,  stated that approximately 50% of persons with an autism disorder also have an intellectual disability. Joel Rubinoff may not realize that many autistic children are prone to wandering and some lose their lives as a result. Some engage in very serious self injurious behavior as my son has done at times. 

If Mr. Rubinoff doubts what I am saying I would be happy to take the time to provide him with sources pointing to the very harsh realities facing many on the autism spectrum of disorders ... if he would start acting like a reporter/journalist and read and report to Canadians that autism is far from being about undiagnosed historical geniuses.  Nor is it only about actually diagnosed, highly intelligent children like his son.  For many including my son Conor Doherty, autism is a complex, serious disorder.  I love my son dearly and I know, contrary to Mr Rubinoff's "reporting" that my son's life is very restricted  and his future as an adult whose parents will not always be with him is very bleak. 

(For Mr. Rubinoff's benefit I am the father of a severely autistic son and I have been involved in autism advocacy for 15 years in New Brunswick where, together with fellow parent advocates, we were able to establish a model early intervention for autism program, obtain some autism educated Education Aides and Resource Teachers, and successfully fight the closure of the Stan Cassidy Centre Autism Team which treats and helps many children and young people with serious autism disorder issues, the kind of issues Mr Rubinoff appears to be unaware of.)

Autism Reality Check: Autism Is Not A Person - It Is A Disorder, A Group of Disorders or A Group of Symptoms

Autism is not a person.  

Autism is defined by some authorities as a disorder, by others as "autisms" or a varied group of complex heterogeneous disorders and by still other authorities as a group of symptoms which together have come to be referred to as "autism".  Autism is not, however, a person and because of that indisputable fact it can not sign petitions lobbying government institutions to abolish legislation passed to fight autism.  Autism can not oppose the rights of actual persons to be cured or treated for autism and can not oppose the rights of parents and other legal caregivers to seek treatments and cures for those actual persons with autism for whom they love and for whom they are responsible to provide care for and who actually do provide such love and care along with the best lives they can within their means and abilities. 

cc: Alleged "Thinking" Persons Guide to Autism

      Alleged Autism "Self" Advocacy Network

Autism Parents Are Not Unbreakable

  

The allegedly UNBREAKABLE blade of my window ice scraper snapped off under the strain of several days of heavy ice scraping in this December's cold and snowy Canadian winter weather. In fairness to the manufacturers and distributors of the "Unbreakable" ice scraper blade I have used it well past the 3 year limited warranty and it has seen lots of use in previous Canuck winters. People, including parents of severely autistic children, can also break particularly if they face other socio-economic and/or family and health challenges.

Not all parents break in the face of the challenges and fears that haunt many parents of severely autistic children but some do.  All of us know that it is highly unlikely that anyone will provide our autistic children with the love and care, the security and the enjoyment of life, that we have provided our children.  Some of us, not all, but some of us, break under the pressures of those facts.  Some parents rather than leave their children to a world that they know will not care for them kill their own children and take, or attempt to take, their own lives.

The world of "autism" awareness is  cursed by a group of fellow parents that attacks these parents for any effort to treat their own children, who do nothing to help those parents and their children in any meaningful way. They most assuredly will not provide any meaningful assistance to the children whose parents they condemn for trying to end their existence to prevent their adult autistic children from suffering lives on streets, hospital wards, jails and mental health institutions. They do not realize that those parents are broken, just broken, by the realities they and their children face and the children will face after their parents are gone. Yes, they are broken by the realities their children will face after they are gone; NOT by people talking about those realities as some erroneously claim.

These alleged thinking persons who purport to offer guides to autism and who attack all parents who do not drink from their "autism is a gift kool-aid" do nothing because they too are broken, their common sense is broken, their ability to see autism realistically is broken, shattered under the weight of their irrational belief system.

We are all people. Ultimately our bodies outlast our limited time warranties. None of us can  dare  claim we are unbreakable.  The alleged thinking persons would do well to remember that reality as 2013 slips away and their own children age and move closer to their own very uncertain futures.    

THIS Is Autism, Conor's Autism Reality, Self Injurious Behavior

Suzanne Wright's recent honest and courageous statements in support of a National Autism Plan in the United States has attracted the wrath of Neurodiversity cult members and they will not relent. All the usual suspects  have been voicing their irrational outrage Emily Willingham, Shannon des Roches Rosa, John Robison etc.  In their modern version of the "Cold Mothers Cause Autism" non evidence based, fantasy, attack on parents that caused so much pain they condemn parents and family members for telling the world the unspeakable truths about autism: autism is a disorder, or group of disorders, harmful disorders that can inflict pain and suffering on those who suffer from them.  Following is a a comment and set of pictures I posted in May 26, 2012.  They show my son's joy turning to pain in a flash on the swings of his old grade school.  My Canon camera was set on "sports" mode to show several action shots in sequence and captured this harsh autism reality ... the kind of autism reality that you will not see on "feel good about autism" group sites and blogs.

Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash

I have never accepted, and have in fact been openly contemptuous of, the view that autism is a joy, an alternative, even superior way of thinking.   My son's autistic disorder diagnosis accurately describes autism as it really is ...  a disorder, one that  impairs the lives of those, like my son Conor, who suffer from that disorder.  In my view those who promote autism as anything other than what is, who portray autism as a feel good alternative way of thinking delude themselves and ill informed members of the public. In societies where the public participates in a democratic process to determine what services and interventions will be made available to help those in need the light and fluffy portrayals of autism do a serious disservice to those with severe autistic disorders who require help in living and enjoying their  lives.

In the picture above, and most that follow these comments, my son is shown enjoying time on the swings at the neighborhood grade school he attended several years ago.  We arrived early and no one else was present on the grounds. There was no sensory overload.  It was overcast and mildly cool but very pleasant. We made no demands on Conor and let him enjoy his time on the swings which, for the most part, he did.  We were there only  a few minutes though when, quite suddenly and with no discernible external causal factors, no external stress factors, he began hitting himself on the head.  There was no apparent internal cause for his sudden shift to self injurious behavior either.  He had enjoyed breakfast and had visited our washroom facilities for personal reasons.  He showed no indication of discomfort whatsoever prior to switching suddenly from enjoying the swings to self injury. 

Conor's sudden shift from enjoying the swings to self injury suprised me only because it was so sudden and occurred while he was thoroughly enjoying himself.   After 16 years of 24/7 caring for my son I have no idea what caused this specific outburst of Self Injurious Behavior (SIB) any more than most similar incidents where there were no obvious external or internal causes.  What I do believe, and believe fully, is that such sudden SIB's are a result of his neurological disorder, his autistic disorder.  I don' t give a darn whether any autism experts accept my anecdotal evidence or not.  Conor's SIB is part of his autistic disorder.  The many well intentioned autism researchers who gathered in Toronto for the IMFAR convention might wish to consider spending more of their time, resources and intellects reseaching Self Injurious Behavior in persons with Autistic Disorder or Autism Spectrum Disorder as it will be officially known after May 2013.