Tuesday, February 17, 2009

Absurd Social Models of Autism Ignore Severe Autism Realities

Restigouche Regional Hospital, Campbellton New Brunswick

Centracare Long Term Mental Health Services Center, Saint John New Brunswick

As the father of a severely autistic boy I am repulsed by attempts to redefine autism from being a medical concept, a neurological disorder to a social model based on variations in personality and modes of thinking. At its most benign the social models of autism are inherently self contradictory. People who have received a medical diagnosis of autism wish to be thought of as autistic, they are proud of their autism, BUT they do not want "their" autism to be known as a medical condition. Autism, however, has no meaning other than as a medical disorder. A person acquires the label autistic because they have received a medical diagnosis. They received the diagnosis because of significant behavioral, communication and social deficits. At its worst though the social model of autism is a dangerous delusion.

The social model is dangerous because it requires that we close our eyes to the realities of autism, particularly the more severe manifestations of autism. There are many persons with high functioning autism and Aspergers for whom it is fine to ponder autism as a social construct. After all many can attend university, have careers, get married and otherwise function independently in society.

For many low functioning persons with autistic disorder life is quite different. For them the future is one of dependent living in group homes and institutional facilities. For some lower functioning autistic persons language is a severe deficit. Not just speech but understanding or using language by any mode. For some, intellectual deficits accompany their autistic disorder.

Here in New Brunswick I have been involved with autism advocacy since my son's diagnosis 11 years ago. With many other parents, I fought for pre-school autism intervention and autism trained teacher aides for autistic students. These resources have been helpful for many New Brunswick children with autism disorders including some with Aspergers. These special resources were dedicated to helping these children because they needed the extra resources, the specialized intervention. They needed these interventions because of the deficits which defined their medical disorders, their autism spectrum disorders.

I have also fought alongside other parents for the continuation of a tertiary care program for autistic children which had been threatened with termination. The plan to close the program arose not because it was unnecessary, quite the opposite. The autism pediatric tertiary care program was being closed because it was placing such demands on the resources of the facility which provided the program that it was threatening other programs. The announced closing prompted a strong reaction from parents of autistic children. The program, with the involvement of the facility's professional staff, and then Health Minister Brad Green, was saved.

I have also visited two mental health facilities where some autistic adults in New Brunswick live. New Brunswick has a privately operated group home system badly in need of many improvements. For some autistic adults though even a group home is not the reality. Some are too severely autistic, present too many complex challenges, to live in a group home. For some institutional care is the future.

I visited the Centracare facility in Saint John several years ago with a friend, a father whose adult autistic son was living in the facility. At the time my son Conor was only a child. Last week I visited the psychiatric building of the Restigouche Regional Hospital in Campbellton. I was particularly interested in the treatment of the autistic adults living there. The people from the hospital were competent and caring individuals. They do what they can for all their residents including the autistic adults. For me it was reassuring to meet such people but it was still disturbing to see what may be my son's future.

Conor is older now, he will turn 13 this Thursday. His future is much closer. His future may well mean life in a group home, or in an institution like Centrcare or the Restigouche Regional Hospital. For me it is impossible to cling to the outrageous idea that autism is not a medical condition. Reality is far too close at hand for such a dangerous delusion.

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Claire said...

Oddly enough, I am in the middle of writing a post about the effects of the "social model" concepts on physical/cognitive disability. May I please quote you from time to time on these matters? Thank you for your insights.

Unknown said...

Feel free to quote me as you wish Claire.

SM69 said...

Good post, very sensitive. These issues you raise are real. Even Simon Baron Cohen who is a psychologist with a traditional view on autism was recently been caught by the media saying autism is a medical condition. This is quite amazing, I thought it must be a missed quote but apparently not. Regarding the issues you raised, the future for our children becoming adults is quite daunting. I am constantly worried about it too and like you I have visited many placements for autistic adults. Too often I am involved in the care of adults who have been highly medicated for years. I have yet to find a psychiatrist with suitable understanding of the condition and of the origin of behavior. Often a challenging behavior is treated with what they call here “detention”, being sent to a locked padded room under CCTV surveillance, this can last for 4hr at a time. A non-verbal person with little independence being sent to receive this type of treatment, what the hell is going on in the psychiatric services? The alternative choice is sedation and medication. I have not heard anyone asking the simple question: why did he do it?. Not once. With heavy and multiple medications, there is a progressive loss of function, globally, and the answer to the decline is yet more medication. This is incredible, in my opinion a crime. Schooling is important but it will last only till age 16 or 18, maybe a few more years if lucky, but after this, what is there? This is an area I want to focus on as soon as I can as I have always been “behind” in setting up the resources my son needed. As I identified the needs as we faced them, one after another, it always took way to long to remediate effectively to his needs. If I had caught him in time for example, when he suddenly lost all his skills, I would have known right away how to investigate this medically and I am almost certain we would not be where we are now. Like you, I know autism is a medical condition, there is little doubt about it. It is well substantiated in the medical and scientific literature. People who refute this are either Asperger or HFA and they dislike the idea of disease and they are not even aware that their own behavior, cognition, sensory functioning, socialization skills, as well as everyone’s behavior as a matter of fact are highly related to physiology, nutrition, the state of functioning of the immune system as well as the digestive system. The rest of the people who do not see autism as a medical condition are made of psychologists and psychiatrists who actually have not learned about autism from the broadest academic perspective as well as from a practical point of view. These are the worse people, because they tend to hold key positions and prevent knowledge and effective alternative measure to be put in place- why would that be? Because they are not needed, because they are afraid of things they do not know. Autism is a dirty business.

shakingsystem said...

Political indifference to a national crisis must no longer be tolerated.The current patchwork of provincial programs are unacceptable.The "epidemic" of the frightening statistical numbers rising each year is an all too familiar "tune" being echoed day after day year after year.The "epidemic" of some government officials who stand by and do nothing to support or help the families in financial and emotional crisis is also unacceptable.
The reality facing many government officials is that they should get on the "ball" for the creation of a National Autism Strategy.Bearing in mind the overwhelming numbers of children with autism,the government should react immediately.The big picture will not be a pretty one: "Pay now or pay Later."

Training and certifying people as health-care professionals(to be capable of working with mild to severe autism) would be a good start. Sensitizing and making medical professionals aware of the different degrees of autism,should better prepare them to be accomodative to the specific needs of each individual case.Also making government aware of the specifically tailored needs of individuals with autism,within a facility or institution would give them a better idea of how to better budget these establishments.

If governmnent decides to "snooze" on these issues,they will have to deal with serious issues such as: the exponentially large numbers of individuals not properly accomodated into properly administered facilities.For many parents the future is right around the corner.Having peace of mind for the well being of their child should not even be questioned.What we should be asking ourselves is what are we doing as individuals to awake the government from his "Woody Allen Sleep?"A good "shake" is what's needed.Remember that change will come, only when there is strength in numbers.

Stephanie said...

The absurd social model is a severe problem for the rational people with HFA/AS. I've actually had doctors fall into the trap that autism is NOT a disorder but a DIFFERENCE, thus I (and many others) receive very little, appropriate, treatment. People with HFA/AS already have difficulty finding treatment and with these ridiculous "social models" we will soon be left without any treatment since, apparently, people with HFA/AS can function perfectly well and don't need any help.

If that is the case than why do so many with HFA/AS live on disability? They propose these "social models" while living on disability because they are unable to hold a job, which they attribute to society not "accepting" them, not themselves, and thus attempt to change the world, not themselves.

Sadly, they have been somewhat effective. But, I think, in the end, logic will win.

farmwifetwo said...

Having one on either end of the scale, I think I should be entitled to an opinion on this... and of course I have one.

NLD is not a "way of being" or a "way of thinking", at the very least it is a learning disability. No, I don't have any urge to change my eldest's personality... but he needs to be educated to master the learning disability. The difficulty in mastering tasks, planning his day, Language Arts, behaviour and social skill mastery, independance. Yes, he "appears" normal... but his Dx should get him services. He only gets them b/c of testing (psychometric/language) that show the medical diagnosis is correct.

I also hope he and his other high functioning peers are removed from the ASD spectrum. That to receive services, their dx are treated as a medical condition and proper "how they learn", "where is the LD and how do we help" testing is done automatically.

I'm tired of the fight to get proper services for my elder son. The ND crowd is doing him no favours. Instead they are implying he's "just fine" and doesn't require support.

There is a private school nearby that is going to start offering the Arrowsmith program. I am seriously considering that option closer to highschool.


Anonymous said...

Although my son is considered 'high functioning' simple tasks in life can be torturous for him. There has never been a moment where I could swallow the 'social model'. Few ideas make me angrier than the thought that his autism is simply a social difference. What a luxury for experts to be able to ponder such stupidity. My son's autism is not a part of his personality, instead he has to struggle to make connections and navigate through his painful reality to assert his personality. I miss him. I miss the little boy that I knew prior to his MMR at age 2.5
The 'social model" diverts focus from the issue of the causes of autism. Someone can be held responsible for a medical epidemic but nobody can be held responsible for a social difference.
Thank you for writing about this subject.

Anonymous said...

I found the many comments posted here very interesting, particularly the ones made by parents of children with autism. Im not advocating for either model (social or medical) but I have to say after working in residential settings for adults with ASD for 12 years - I found the staff who were trained (many to degree level) in the Social Model of care to be incredibly intuitive, creative and had an ability to look past labels/diagnosis and see a child/adult for who there were. Their indept understanding that in many instances the environment and how society is structured is problematic for a person with autism was very interesting. With this knowledge they were able to support people with ASD in many community settings - just by being creative with their knowledge (both medcial and social) Unfortunately I found many of the Medical/Clinical staff obsessed with labels and on deficits within the person - which not to disregard as this information is crucial in supporting a person - but it is only one side to that person. The way I see it is - I have many faults but if you asked me to give an overview of myself here - I would only portray maninly my positives. I find in many instances people with ASD are described by words such as "challenging", problematic", "severe", "profoundly disabled", "communication deficit" - which may be true - but all very negative and only one side to the person. When asked how did I find working with people with autism for twelve years I say it was a fun time with many challenges. I got to know so many unique personalities and gifted people who interacted and communicated very differently to me. Often people look at me very confused and say "but i thought people with autism were...... and the negatives pour out - such a pity that the sole focus is on peoples deficits as opposed to their likes, dislikes, gifts and talents - I believe a happy medium needs to be reached with both models

Anonymous said...

There are some very interesting comments here on the social model of disability and autism. I agree that there most certaintly is a place for the medical model in the diagnosis and treatment of children and adults with ASD. But what really gets to me is the following - once the medical label has been attached to a child its seems to be the bee all and end all - there is much more to a child than a label of ASD - I have worked with kids with ASD for years and have seen some wonderful happy children with great personalities and great sences of humour. Sometimes when new staff start they can be very focused on the 'negative' aspects of ASD and the medcial diagnosis. I always say as support staff we can't change people with ASD and its not even our jobs - what is key is that we get to know each individual at a very deep level and provide a service that is suited to their individual wishes and needs