Friday, March 12, 2010

John Elder Robison owes parents an apology

John Elder Robison owes parents whose children have autism an apology.

Mr. Robison, who is best known for writing book "Look me in the eye", was recently asked to serve on the board of Autism Speaks and he wasted no time before sticking his foot in his mouth.  The shoe leather incident happened earlier this week as he was responding to a comment left on the Autism Speaks blog by Harold Doherty. Mr Doherty asked the following question -
Mr. Robison do you feel that as a very high functioning person with an Asperger’s diagnosis you have any particular insight to offer on behalf of very low functioning persons with severe Autistic Disorder or should the persons who actually care for them and have legal guardianship speak on their behalf?
Mt Robison responded with -
I guess I’d counter with a question of my own. What makes you think a person who cares for a disabled autistic person is better qualified to speak on their behalf than me, a high functioning autistic individual?
Caretakers all too often have their own agendas at odds with the people they supposedly care for. They want to read a paper; their charge wants to keep practicing. There is always the temptation to do what’s easiest for the caretaker rather than what’s best for the care-taken person.
There are so many cases of caretakers abusing or neglecting their charges and forcing unwanted therapies on disabled people that I would not be so quick to assume caregivers should have the exclusive right to speak on behalf of the disabled.
That said, I know there are many loving caretakers out there who are truly in tune with what their disabled charges want and need. I would give considerable weight to their opinions if I were in a situation where that was appropriate.
There was more to the exchange, click on the links above to read the full comments.

Mr Doherty has responded to the comment on his site, but since the comment was directed at parents in general, I thought I would add in my two cents worth.  I posted the following response on the Autism Speaks blog but, as I don't expect them to actually publish it, I am including it below.


Mr Robison,

I think you mean well but your statements concerning caretakers of children with autism are completely out of line. As the father of three daughters who have to deal with autism, I can assure you that I am far better equipped to speak for their needs than you are.

I have spent untold hours working with them and helping them learn to communicate with the world around them. I have worked with their doctors and therapists to tailor their treatments to meet their specific needs. I have spent many sleepless nights reading the latest research on autism, searching for information that might help me better understand them or might suggest a new treatment that would help them better cope with the world.

I know many parents who do the same.

Autism is a disorder that encompasses a large range of functioning. From watching my twin daughters, I know that even identical twins can have different challenges from autism and the symptoms of their autism can be quite different. No two people with autism are the same, so the issues you have may or may not be relevant to all people with autism.

You don't know my children's name or any details about what their specific difficulties are. Yet you think that you, a complete stranger, might be better able to speak for my daughters needs that I would?

I find your assumptions that we caretakers "often have our own agendas" and the implication that we are selfish and take the easy way out to be insulting in the extreme. As most parents would tell you, we as a group will go to almost any length to help our children. Many of us completely rearrange and refocus our lives in an attempt to provide a better environment and future for our children. I don't think that we parents deserve any special thanks because this is what every parent should be expected to do for any child of theirs.

But we most certainly do not deserve to be called selfish or told that we don't do what is in the best interest of our children. I think you owe parents an apology. I suggest that you raise your awareness of exactly what parents do for their children because you do not seem to understand. If you did you would be working with us rather than calling us names.


  1. In spite of Robison's faux pas and appointment to a position at autism speaks, I don't think he will have very much, if any, influence at AS in terms of influencing their direction and research. His appointment to the board was merely window dressing for political reasons.

  2. This comment has been removed by a blog administrator.

  3. Clay, your comment isn't related to the subject of the post at all but was simply a link to your latest post. Hence it ended in garbage can like all spam does.

  4. Somehow, in pasting that quote, you missed my next paragraph where I state that I do not presume to speak for your kid or anyone else.

    Furthermore, at no time did I say that my challenge to the motives of caregivers was directed at parents or any of you specifically. Your own parenting and caregiving attitude notwithstanding, stories of bad caregivers are legion throughout the world of disability.

    Look at my brother, whose "caregiver" lost his medical license and would have gone to prison if the events happened today. My own experience with special ed caregivers was quite mixed as well. Like I said, I don't doubt your caregiving one bit but my life experience has shown me it's not all roses for some of us.

    All I said was that I bring my perspective as an autistic person with my level of functionality to the board.

    Make what you will of that, but it's not a comment at you personally because I don't know you or your kid. That said, I joined the board in hopes I can steer research in a direction that better benefits all people with autism today, which of course includes anyone in your family touched by this condition.

  5. That's okay, Mike, it was just an invitation. I know Jonathan already answered his.

  6. Jonathan, you may be right, time will tell. But if his comments weren't just an oops but reflect his true opinion towards parents, then I think that him being window dressing would be a good thing.

  7. Mr. Robison,

    I did read your entire comment, several times in fact. And if you notice in my post, I point out that what I quoted was not the entirety of the exchange and pointed my readers to the rest of it. Having said that, it does not especially matter whether you presume to speak for my children.

    The point is that you smeared an entire group, which includes me, as having questionable motives, being selfish, and taking the easy way out. Your personal experiences and stories you have heard notwithstanding, you are perpetuating a harmful stereotype about a group of people. I find it ironic that someone who spends their time trying to debunk stereotypes concerning autism would find it acceptable to spread his own.

    If I had said that people with autism tend to be cold and uncaring, I am sure you would object. If I then justified my actions by saying that I was not referring to you specifically but all of those other people with autism - you know, the ones you hear stories about - would that mollify you? Of course not, and nor should it. Harmful stereotypes are still harmful, even if you can point to a specific example where they might be true.

    In a similar fashion, you may not have intended to label me and my family specifically, but that is exactly what you did. So I am speaking for myself as well as other parents like me in saying that your statements are not acceptable.

  8. MJ..... I suggest you focus on your family rather than stir up a "witch hunt". I'm sure you have far better things to do with your time. John Robison..... I read your book and found it most entertaining and informative. You are a true gem.

  9. Anonymous,

    You are certainly entitled to your opinion but your comment is rather baseless.

    When an outspoken autism "advocate" who is, in his own words, very minimally impacted by his autism chooses to question the motives of parents whose children are actually impacted by their autism, then it is very relevant.

    You might want to ask yourself whose motives should be in question here - someone who makes their living from their "autism" and wants to tell you what it is like or a group of people who spend most of their time toiling in obscurity trying to help their children learn to deal with the world.