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Thursday, June 9, 2011

Suffering is Not Part of the Diagnostic Criteria

I apologise in advance for this rambling post. These thoughts have been bouncing around in my mind for some time so I am really just thinking aloud. This means I might not be coherent and may even be disrespectful inadvertantly. I welcome feedback in that case.
I recently read an interesting post by Emily at And once again was struck by comments suggesting if a child or adult meets a certain level of functioning, or functional coping,  they no longer qualify for the diagnosis of Autism. This idea of pure Autism versus 'not autistic enough' is one of many splits evident in the online ASD community. And one of the more confounding and frustrating for me. This perspective seems to say, if you are not suffering you are not Autistic enough to claim the diagnosis. If you were suffering in some way then you developed enough coping, life and social skills to get by then you no longer have the right to speak for those who continue to be severely distressed. I'm sorry but I find that incredibly unfair.

Do we tell people with paraplegia they are only disabled until they learn to overcome their initial struggles and move on to have a fulfilling and active life? Do we say to those with Downs Syndrome, youre too joyful and productive to be considered disabled? Does the mother with a child who is quadraplegic have a right to tell the mother of a paraplegic child, your kid isnt as seriously paralysed as mine, therefore I refuse to accept your child is disabled at all? Yes these are simplistic analogies, but they are examples of how all disability falls on a continuum of severity and subsequently how it impacts peoples lives.

There seems to be some within the Autism community that almost resent those who overcame the disabling features of their Autism to lead good lives. Rather than holding these folk up as examples of potential for all those on the spectrum, some shout out, 'don't you assume to speak for my child and his suffering'. 
This view dismisses the value that people who travelled a path towards greater independence and day to day functioning can offer all of us. As parents of young ASD children, as other people living on the spectrum, researchers, support services. Their views and insights are invaluable. Who best than those who struggled to overcome seemingly insurmountale obstacles to speak of the Autism experience? People like Temple Grandin, Carly Fleishmann, Tracy and Larry from These people were and continue to be deeply impacted by their Autism yet are leading, for the most part, fulfilling and productive lives.

None of the above can be dismissed as high functioning 'Aspergers types' who don't know what typical Autism is like, a comment I hear from time to time. I have a real problem with the suggestion that those with Aspergers are not really Autistic. The fact is the DSM criteria says yes they are. And the DSMV will be unequivocable about it. Yes many with Aspergers are of above normal intelligence, and use that gift to negotiate mainstream school and often employment, that does not mean they do not struggle as a result of their ASD. That they do not become overwhelmed, socially isolated, depressed, anxious, find it hard to hold down jobs. But as many do, also find a small group of friends, live independently, find intellectual and creative outlets and seek to help and motivate others. We can't tell those people they have nothing of value to add to the conversation of Autism now they are living productive lives. Who better to understand the suffering of Autism than those who have suffered because of their Autism? How can we tell those people once they overcome the biggest hurdles of their disability that they now have no right to speak for those who still cannot? Would we tell a slave who escaped from those who captured him he now can no longer speak for the suffering of the slaves who remain?

 I hear resentment and anger towards anyone who dares to share stories of hope and happiness. Perhaps it is a protective mechanism? Maybe there is fear that optimism will only lead to eventual disappointment due to the current bleak projection. But as Lisa Jo Rudy recently said, Autism is a diagnosis not a prognosis. It is not developmental stasis but delay that affects those on the spectrum, no matter where they sit. The evidence of this is everywhere you look in the Autism community.

Suffering is just that, whether due to severe anxiety, or to the frustration of being unable to communicate, or the myriad of other ways ASD impact one individual to the next. None of it is pleasant, much of it is distressing, but there is no way to measure whose pain is the greatest, and this would change every day for each person anyway. The degree to which a persons day to day functioning is impacted by their ASD is part of the new diagnostic criteria. It is a spectrum disorder.  How much each person suffers, or doesnt, because of that is not.


  1. Oh, I hear ya sister! Feeling exactly like this as Boy 1 blossoms.


  2. Mad mother is that you? Still anon? Thanks, and I'm glad to hear you can relate.

  3. Lots of thoughts there, lost of intertwined issues.

    The difference between "functioning" and "suffering"; the question of whether autism can ever be meaningfully cured; the problems with a diagnosis that depends on symptoms and their severity; the question of the relevance of the speaker's experience to their arguments and insights, etc!

    There will always be people who don't like seeing other successes, since they make them feel like failures, or remind them of how far they have to go. Sometimes the problem is it's interferring with their established world view (in this case about their own experiences and understanding of autism).

    Personally, I get annoyed when people with high functioning (excuse my terminology) ASD kids try to speak on behalf of all parents of autistic kids - they've got no idea what a hell it can be. But I also get annoyed when people with very and permanently challenged ASD kids, think they have the only "right" view. I'm always happy to hear about experiences and get insights from those, but when we take our experiences and decide they provide the basis for everyone's attitudes, that's when it goes wonky and gets upsetting, particularly with a spectrum disorder. That's why I always ultimately rely on science and sound arguments (checking for the factual premises and sound logic) to make my decisions and form my views. There is a place for experience - of course - it's insightful and informative, but it is not definitive or proofs of "right thinking."

    I hope that was clear! I was thinking and typing at the same time, distracted cause my son's due home from school soon :)

  4. I too would be annoyed if one person assumed to speak on Autism as if they represented the whole. Yet I am always interested to hear each persons experience of how they negotiate their disability. I also agree that many really dont understand or empathise with the truly difficult circumstances that many families find themselves in. I would hate to be seen to invalidate those experiences in any way by what is said here. But what I do ask is that those families who feel invalidated by the hopeful narratives dont project that back and then negate and invalidate what others have managed to overcome, and how they feel and think about that. This is proably asking more than what many people are capable of though, understandably. It just seems cruel to me to tell people, yeah you found a way through so now we dont care what you have to say.

  5. This is a great post, Sharon. There are a lot of stressed and angry people out there, and they take out their ire on people who are doing well. It's a mentality of scarcity, and it comes of scarce resources and nonexistent support -- for the parents and for the kids. It's understandable, but so destructive -- to individuals and to the community. It's as though to really be autistic, you have to be a victim. If you're an autistic person with dreams, determination, and self-respect, it's a no-win situation to be dealing with that kind of thinking.

    I have felt very pressured in the autism community to foreground my difficulties rather than my successes, and I've finally realized that it's crap. I'll never be "autistic enough" for some folks, and it doesn't matter to me anymore. These folks don't have any impact on my life, and when I hear them get angry, I just consider the source and try to have some understanding for where they're coming from. Sometimes, they have some understanding for me in return, and sometimes, they don't.

    As long as I stretch my awareness of other people's experiences, that's what really matters to me.

  6. Thanks Rachel, I agree with all you say. I think I understand what motivates people to lash out. And I agree the response is ideally to be compassionate, to a degree. You seem to be prepared to stretch your awareness far further than many.
    I dont think any one person can talk for the rest on direct human experiences (lord knows I am not interested in hearing what a man has to say about my lived experience) but I think people with Autism are the best advocates of people with Autism. And I think trying to silence their voices just becuase they do not meet a set personal criteria is unecessarily mean.