Monday, April 21, 2014

DSM or ICD, Either Way Autism is a DISORDER, or Group of Disorders, Not "Just a Difference"


There are a number of very high functioning persons claiming to be autistic or claiming to have a "syndrome" or "different way of thinking".  Autism is a difference not a disorder they cry out in anger against all efforts to find treatments and cures, such efforts usually led by parents and family members of severely autistic children and adults.  The great mystery to me is why they embrace the term "autism" to describe their "difference" but reject the label as representative of a medical diagnosis or disorder.

In my humble opinion it is very unfortunate that both the DSM-5 and the ICD-10 group the former Autistic Disorder, PDD-NOS and Aspergers Disorder/Syndrome under one label Autism Spectrum Disorder.  It if unfortunate that the differences between extremely high functioning, successful academics and business persons are grouped together with the 50% of the "autism spectrum" who suffer from intellectual disability many of whom will live out their lives in some form of adult care from group homes to psychiatric hospitals. 

One of the unfortunate results of the combining of these neurodevelopmental disorders, which actually began in earnest in the DSM-IV, is that some of the very high functioning persons, usually with Aspergers, attack all those including parents and other family members fighting for treatments and cures for their own family members with severe autism disorders.  These high functioning "auties" and "aspies" as some like to be called make good spokespersons for governments and organizations seeking to downplay the very severe challenges faced by those on the severe end of the autism spectrum.

One of the most puzzling aspects of the spectrum is the earnestness with which some of the anti-cure, anti-treatment, anti-family high functioning autistic persons claim that they do not have a DISORDER. It is puzzling because autism exists as a medical diagnosis, referred to as an Autism Spectrum DISORDER under BOTH the DSM-5, the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, and the ICD-10 Classification of Mental and Behavioural DISORDERS.  When and why did these individuals come to call themselves autistic if it was not done pursuant to medical diagnosis under one of these two leading diagnostic manuals or predecessor editions?

When my son with a severe  Autism Spectrum Disorder intentionally puts his hand through a glass window pane as he did last week, and has done in the past, it means that his autism is a disorder, not just a difference.  When my son goes from enjoying his activity on a swing set to hitting his head repeatedly, and with force, as he has done on many occasions it  means that his autism is a disorder not just a difference.  I have seen this lack of understanding and compassion and lack of respect for the views of parents and other family members who care for severely autistic loved ones from some  high functioning autistic persons for over a decade of autism advocacy.  I do not expect them to change, to abandon their adoration for the label autism. I do not expect them to recognize that those with severe autism actually suffer from a disorder.  My discussions with such individuals has given me no indication they would ever change their views on this subject.

What I would hope is that some day, academics and practitioners who have promoted the careers and perspectives of high functioning autistic persons and trivialized the challenges faced by those who suffer from severe autism disorders will start showing some integrity and professional responsibility whether they live in Montreal, Canada, New York, USA or Sydney, Australia. What I hope is that all academics and professionals will stop trivializing the severe challenges faced by so many with autism disorders and tell the world the whole truth about autism DISORDERS.

Autism is a disorder or group of disorders. Your professional and academic associations have said so and if you don't agree at least don't worsen the lives of the severely autistic for whom you lack interest or compassion; stop misrepresenting autism to the world as a gift or "just a difference". 

8 comments:

Anonymous said...

The high functioning part of the disorder with its association with average to above average intellect has made this very popular with the general population.
Unfortunately this pushes low functioning autism to the fringe that gets little attention in the general media.

Ed Danneberg said...

It is so much more comfortable for society to deal with the high functioning individuals on the spectrum, they don't want to see the individuals who struggle with their disability. If your average person could see the blood, shit, and chaos that many of our kids and families deal with every day - and often all night, they might change their minds about how "neat" and "interesting" autism can be or those who live it.

VMGillen said...

Amen.

Roger Kulp said...

Harold,I wonder what you think about people like myself,or Johnathan Mitchell,who got our autism diagnosis long before the DSM-IV,when the standards were stricter.Who may not be able to function as well as an Ari Ne'eman,or a Dan Akroyd,but are still able to function well enough not to be in a group home or psychiatric hospital.

H L Doherty said...

Roger, I appreciate input from you and Jonathan Mitchell even if I have a different perspective on occasion. You are both courteous and respectful. Although we have never met in person I believe, based on your commentaries, that you are both very good people.

I do not object to persons diagnoses even the Ari Ne'emans, Michelle Dawsons. What I object to is persons who are clearly high functioning objecting to the use of labels like "disorder" or otherwise trying to glorify autism and trivialize the limitations imposed on my son's life, and those of others with severe disorders, be their autism. Ari Ne'eman has absolutely NO experience on which to understand my son's condition or those of others severely affected by autism disorders. He has no right to attack people and organizations because they describe the harsher realities of autism or because they seek treatments or cures that might help those with severe autism disorders.

To my knowledge neither you, nor Jonathan Mitchell, attempt to glorify autism disorders or deny the realities faced by those more severely affected. I am glad to have your contributions to this blog, on Facebook and on Twitter should you decide to use that last mentioned social media.

Anonymous said...

It is easy to not define autism as a "disorder" if you are on a place on the spectrum where it doesn't define your day to day existence. But as a father with FOUR boys with a diagnosis on the spectrum, I KNOW that there is a range, and there needs, abilities and challenges are all different. No not all of the people on the spectrum are Sheldon Coopers, nor are they Rainmen.

Mommie that Gets It said...

I have a son who is very high functioning on the autism spectrum. He asked me not long ago if he had autism. His doctor told me to describe it to him as "just a difference". Which I did. In my son's case, he has a few social issues, motor skill issues and a speech delay. He believes everyone with autism is Einstein, I explained to him that is not the case. I also told him that there are people that have severe autism. I want him to know and understand that not everyone has PDD-NOS or high functioning autism.

Paul said...

Hi Harold

I have Autism and I am in firm agreement with you, what you have said is real and from the heart, it is sad fact that people trivialise, glamourise and promote very damaging steryotypes of autism. What you have said is real. :-)

As a speaker I make a point of this is my reality of Autism and I cannot speak for others realities with autism.

I thank you. :-)

Kindest regards

Paul Isaacs