Saturday, June 23, 2007

Social Stories for autism professionals

Dr. Bombay (not his real name) wants nothing more than to help autistic children and adolescents learn how to fit into neurotypical society, so that they can achieve their goals of having jobs and relationships. He isn't all that concerned with making tons of money, but he would like to be known as the "go to" guy for parents who are concerned that their offspring might pick their noses in a job interview.
Dr. Bombay is a good guy, basically, and has many positive things to say about autistic people, and sometimes even remembers that many of us prefer "autistic" to "person with autism" and can explain why without even rolling his eyes.
However, Dr. Bombay commits a serious faux pas, when he lets it slip that autism is "no excuse" for bad behavior. The word "excuse" becomes a virus, quickly spreading throughout the conference setting. At every subsequent session, parents and professionals are hearing that we must not use autism as an excuse for failure, which is defined in various ways by the speakers and listeners.
Comments from the floor are presented in the same language. The next day, an autistic (adult) speaker continues the theme, and also paints disclosure as (sometimes) a form of or avenue toward the increasingly amorphous concept of "making excuses". The final straw is added as a much younger person "with autism" lets the parents in attendance know that they should not view their childrens' autism as an excuse for not trying. Now the whole conference is abuzz with the word, repeated echolalically, losing all meaning and context. Now anyone wishing to discuss accommodations in society and the workplace is looked upon with suspicion, and compelled to nervously tack on the now standard disclaimer.
What has gone wrong here, and what could Dr. Bombay have done differently?
Let us consider that perhaps there has been an error in perspective taking. Dr. Bombay is not autistic, which is not his fault, but does perhaps hinder his ability to define what any particular autistic individual can or cannot do. More importantly, though, he has failed to take into account that we have every right to choose not to exert our energies toward social niceties, that these monumental efforts are most often unrecognized and unappreciated by NTs who continue to find fault with our acting abilities, and most importantly, that however much employers and others may wish to have an army of identically behaving clones, this is not a thing which would ultimately benefit the species.
Dr. Bombay has failed to consider just how sick and tired an autistic person can get of hearing the word "excuse". This is a loaded word he has used. This is a very anger-provoking word, often used as a weapon by people who have no clue what being autistic is like. Dr. Bombay has forgotten to take into account the subtext, the possible connotations, the ignorance and hatred so often attached to this word.
Now I'm not going to tell you there is "no excuse" for not knowing the power of this word or any word to hold people down. I don't know your situation well enough to say that. I am going to ask, however, that in future presentations, you practice some perspective taking. You are a respected person, speaking to a group starved for information. The words you choose are every bit as important as the concepts you are trying to impart.
Yes, I know, this talk was not directed at us, but at those who must live and work with us. That doesn't help me one bit, Dr. Bombay. From here, these professionals will go back to their jobs in their cities and spread what they have heard to more parents who will then experience relief that they were right all along, telling their children, "No excuses!" And the children will push themselves harder, or not, and will take another hit to their self worth either way, and their future employers will feel quite smug in their conviction that no accommodations are needed, and nothing will change, again, for the better, and people behaving autistically will continue to be marginalized and blamed, and yes the run-on sentence is intentional, it goes to state of mind.
I will keep coming to your talks and offering my own viewpoints, which will continue to be disregarded as irrelevant by parents and professionals alike. I see it in their eyes as I hand them my flyer or raise my hand to speak. I see it pass through them like a storm. They see a person asking for recognition of rights and respect for autistic people. Just another lazy, impertinent nobody trying to make excuses.
Tomorrow (or, possibly the next day): A very positive encounter with a professional at the same conference. Seriously...I promise.


  1. Awesome post, Bev. Really.
    I am attending a conference the second week of July. I'm going to do my bit to spread the word as well.

  2. Bev, you are wonderful! I hate the word "excuse." It gets thrown around so easily, and it is so hurtful. Autism is an "excuse"; addiction is an "excuse"; depression is an "excuse"... They are not excuses, they are reasons.

    We all have limited energy, some things are harder than others. We each have to decide how best to spend our own resources. And sometimes we can use all of our energy and willpower and resources to try to do something and still fail where others succeed easily.

    We accept this so easily with physical limitations. Of course, I am not making excuses if I say that as a slightly overweight, nearly 40 year old stay-at-home mom with bad knees, I am not going to ever win the US Open tennis tournament. It's obvious that my body can't do it. But if I am making excuses when I accept my mental, emotional or neurological limitations.

    I appreciate so much what you are doing, because I do believe that it will lead to greater acceptance and understanding.

    I may have to blog about this myself...

    BTW, for any of your comment readers, I am the NT mom of an autistic son.

  3. It's possible that he might have meant something like "autism should not be stereotyped as inevitably resulting in bad behavior."

    But "excuse" was indeed a poor choice of words, whatever he meant by it.

    And of course, "bad behavior" is a subjective concept that can and does mean very different things to different people...

  4. Interesting cos this is part of what I wrote on my last blog

    "I am either considered too intelligent to use autism as an “excuse” or damned if I do for "malingering" and for wanting an easy ride out of the pit I have dug myself into, or then not even allowed to play the autism card at all because that would be considered to be patronising me. Well equality is not ignoring the condition, it is taking proper account of it and creating a "level playing field"

    And if I should ever encounter Dr Bombay and don't wait to be asked to interupt the presentation when he brings up the issue of excuses I shall no doubt need a better excuse than autism for that, will Tourettes do?

  5. I believe Tourettes would suffice for a simple interruption as long as you are sufficiently apologetic in demeanor. Coprolalia, though, would not be tolerated I am sure. May I reccommend a therapist who may be able through 40 hours of DTT per week, to replace some of your more offensive interjections with the word "kittens"? In that case, your questionable disability would I am sure be seen as quaint and forgivable.

  6. Thanks for writing this, and for trying to open the eyes of these people. It is obviously a hard thing to do, but there is a good chance that some people will read your flyers, will take notice and will change.

    I was thinking about 'excuses' recently and wrote a post on the subject too.

    As I wrote then;
    "I want to help prepare Duncan for society as best as I can, but also I expect society to broaden it's definition of acceptable behaviour. Acting autistic does not have to equate to acting badly."

  7. Ugh. It's especially hard when you're in middle school and you're being bullied and your guidance counselor tells you you have to expect that sort of treatment when you rock and have seizures and don't dress in the fashionable clothes. There's no excuse for me not changing myself no matter how impossible or taxing that might be! (rolls eyes)

  8. The tricky thing is that, unfortunately, some people DO use various diagnostic labels (not just autism) as an "excuse" not to try at all.

    But speaking as a person with attention deficit disorder, I do understand what you mean about how some people then use that to abuse the word "excuse" in a way that implies that every reason is necessarily meant to be an excuse.

    My terrible housekeeping skills, for example, are very much related to my attention deficit disorder. That doesn't mean that I'm trying to get a free ride for not even trying, but it DOES mean I have a legitimate need for more support than most people when it comes to housekeeping. For example, more reliance on professional housekeeping services. Or housekeeping advice that is tailored for the ADHD brain (and not devised on the assumption that it's just about exerting better "will power.")

    If my ADHD label is just an "excuse" for me then I'd like people to explain why I ultimately became MORE productive overall in the years AFTER my diagnosis (particularly once I learned better skills for adapting to it and learned to accept that certain adaptations I had already evolved were necessary adaptations and not just signs of laziness) then I was in many of the years BEFORE my diagnosis.


    (The 8 was a typo; I was going to delete it but then I decided that a certain person might like it :-) )


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