Tag Archives: professionals

I Used to Believe…

The degree of arrogance displayed by more than a few who claim to be “experts” with decades of hands on experience in the field of autism is absolutely staggering.  Their arrogance is only rivaled by their mindset of assuredness. They are unwavering in their absolute knowing about a neurology that continues to baffle the best neuroscientists in the world.  These practitioners not only speak from a place of “authority” they are imperious, contemptuous and profoundly scornful of any who suggest they might want to consult with a few people who are actually living their lives with the neurology these so-called experts claim to understand and know all about.

We have run into more than a few of these professionals over the years.  These are the people who fill me with fear.  They come into contact with hundreds and thousands of children over their decades of “expertise” and it terrifies me.  They win grants and are paid to speak at conferences.  Their opinions are sought by a great many.  They swagger about with their self importance, wearing their years of working with the Autistic population as though it were a badge of honor.  They think nothing of grouping an entire neurology into a small, convenient box labeled “autism”.

They smirk and posture and plaster their walls with their many credentials and degrees.  They make sure everyone understands exactly how many years they’ve been working in the “field.”  They say things like, “autistic children are…” accuse those they disagree with of “falsehoods” and go on at length about how they know what “autistic children” want, need and care about.  They are profoundly dismissive of those who actually ARE Autistic and who dare question or disagree with them.  Instead of listening to the very people they claim to know so much about, they silence with words of contempt.  They attack.  They strike out, bring in reinforcements of like-minded colleagues.  Sometimes they even target someone, almost always someone who is autistic, and try to do damage to them by contacting their employers, or those they have professional contact with.

I used to be shocked that such people would choose to be in a profession where the people they are supposedly wanting to help, end up being the very people they silence and hurt.  It used to surprise me when I would read comments by people who have no trouble using language either written or spoken to get their point across, dismiss and question someone who does not enjoy the same ease with which they do, to communicate.  I used to be naive enough to believe those calling themselves an “expert,” and had degrees suggesting study and dedication in their given field was further evidence of their title.

I used to believe in a great many things.

*This post is not about any one person, but about the dozens of people I’ve met over the years who fit the above description.  There are many people, both autistic and non autistic, who have dedicated their lives to autism, who (thankfully) do not fit this description.  They are open to new ways of thinking, they are actively listening to those who have different experiences than their own.  All of them are engaged in learning, discovering, uncovering more information and examining what they think.  They are operating from a place of humility, and to those people I am profoundly grateful.

facts
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Cart Before the Horse Research ~ By Michael Forbes Wilcox

To Educators, Therapists & Doctors

You are the first people most parents meet after getting our child’s diagnosis.  Therefore you have tremendous influence on how we view autism, what that means or doesn’t mean, what services we seek, and how we then view and treat our child.

That’s a huge responsibility.

The onus is not entirely on you, of course, but don’t kid yourself, you have the power to change the course of a child’s life and their family’s with your knowledge and what you tell their parents.  If you don’t know the answer to a question, do not pretend you do.  Do not rely solely on whatever university you went to, or the medical journals you may subscribe to, the most recent statistic, medical study or your colleagues for information.

If you’ve been taught a particular therapy or  teaching method is the only scientifically proven method to “treat” or teach Autistic children, find Autistic people who were given that therapy or method as children and learn what they have to say about it.  If you find a number of Autistic people are speaking out about a specific treatment or method, saying they have post traumatic stress as a direct result, reconsider your position.  If you still feel this therapy is important to pursue, ask yourself why and at the very least, inform the parents who are considering this method that there are Autistic people who believe it was damaging to them.  It doesn’t matter whether non autistic people and professionals agree, you have an ethical obligation to tell parents that this treatment or method has caused damage to a great many.

If you think you know, if you are convinced you are right about some aspect related to autism, do more research and make sure what you think you know, is in fact true, if it isn’t or if it isn’t clear, then do not present it as though it is the “truth”.  I don’t care how well known or famous you are in the field of autism, if you are not engaged in reading and talking to Autistic people outside of a clinical setting, you have more to learn.  And do not be afraid to admit when you don’t know something or if you find you are wrong about something you previously thought to be true.  Most of us would prefer being told by a professional that you don’t know something or thought you knew something, but now realize you were wrong than to be given incorrect information.  There’s massive amounts of incorrect information out there.  Please.  Don’t add to it.

You have a responsibility, not just to Autistic people, but to those of us who are their parents and to your profession to read everything you can about autism and what it means to be autistic.  If you’ve never read anything written by an autistic person, now’s the time to do so.  If you cannot bear the idea of doing so, if you believe your various degrees are enough, if you feel annoyed, believe I’m being presumptuous by suggesting you do more, then find another profession.  You aren’t doing anyone any favors by continuing to pursue a career in a field that has so few concrete answers but that you are convinced you know all there is to know.

Even if you’ve read one or two books, maybe seen the latest documentary featuring one or two autistic people, it’s not enough.  You need to read blogs and books written by non-speaking Autistic people, there are more and more of them being published every year.  You need to read the writing of people who speak, can sometimes access language, access language all the time, but do not say what they intend, people who have intense sensory sensitivities, those who are hypo sensitive as well as those who are hyper sensitive and those who have a mixture of the two.

Examine your beliefs:  Do you believe that non speaking Autistic people cannot speak because they aren’t trying hard enough or because they do not have anything to say?  If someone’s facial expressions are hard to read, do you believe that means they do not feel emotion?  Do you think Autistic children lack empathy?  Are you convinced that Autistic people are unreachable?  Do you believe Autistic people have no desire for friendship, lack the ability to love, cannot understand what is being said and written about them?  Do you think that if an Autistic person acts more like a non autistic person they have “recovered”?  Do you believe this is a worthy goal?

Please.  Do all of us a tremendous favor.  If you are entering the field of autism or are an educator, therapist, doctor or professional in the field, in whatever capacity that may be, question everything, read, ask questions, examine your beliefs.  Learn what so many have gone through at the hands of well-meaning professionals.  Remain curious, stay open to new ideas and continue to adjust what you believe.

I was terrified when we received my daughter’s diagnosis.  I knew very little about autism and I looked to all of you for answers.  The answers I was given I’ve since learned were mostly incorrect.  Because of those answers, we made a great many mistakes.  Mistakes that hurt our daughter.  Other parents do not have to go through what we went through.  There is so much great information out there, but often finding it can feel overwhelming and impossible for parents.  You have a great deal of power to affect how families think about and respond to their child and their child’s diagnosis.  You can help so many families help their children in ways that are respectful, by honoring them and their neurology and not making them feel they are broken or are to blame for how society misunderstands and treats them.

To those non autistics who this letter does not apply, you who have dedicated your lives to helping children like mine, I thank you.

Rosemary Crossley, Soma Mukhopadhyay, Christine Ashby, Anne Donnallan, Douglas Biklen, Mary Schuh, Leah Kelley, Pascal Cheng, Harvey Lavoy, H. Markram, K. Markram, *Marge Blanc, Susan Marks,  Paula Kluth, Char Brandl, Cecilia Breinbauer, Phil Smith, Barry Prizant *do not have photos* and so many others, thank you.

Rosie Crossley

Soma Mukhopadhyay

Christy AshbyAnne DonnallanDouglas Biklen

Mary ShuhLeah

PascalHarvey LavoyH. MarkramK.Markram