Sunday, February 16, 2014

A Challenge to Autism Professionals



The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.

Whew. When I write that it sounds pretty bad, but I function adequately in this world. I am now 17 and I am a fulltime high school student in a general education program. I am in Honors Chemistry, Honors US History and Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight As. I work out with a trainer 2 or 3 times a week to get fit. I study piano. I hike, cook, and help take care of a horse. I am invited to speak at universities and autism agencies. I am the author of Ido in Autismland, and a blogger as well. I have friends.

I say this, not to brag, but to let you know that people like me, with severe autism, who act weirdly and who can’t speak, are not less human, as Dr. Lovaas suggested, and are not doomed to live lives of rudimentary information and bored isolation.( “You have a person in a physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense,” the late Ivar Lovaas, a UCLA researcher, said in a 1974 interview with Psychology Today).


I communicate by typing on an iPad with an app that has both word prediction and voice output. I also  communicate by using good, old-fashioned letterboard pointing. If I had not been taught to point to letters or to type without tactile support, many people would never have realized that my mind was intact.

My childhood was not easy because I had no means to communicate at all, despite my 40 hours a week of intensive ABA therapy. I pointed to flashcards and I touched my nose, but I had no means to convey that I thought deeply, understood everything, but was locked internally. Meticulously collected data showed my incorrect answers to flashcard drills, but the limitations of theory are in the interpretations.

My mistakes were proof to my instructors of my lack of comprehension or intelligence, so we did the same boring, baby lessons year after boring year. How I dreamed of being able to communicate the truth then to my instructors and my family too, but I had no way to express my ideas. All they gave me was the ability to request foods and basic needs.

Here is what I would have told them if I could have when I was small. My body isn’t under my mind’s complete control. I know the right answer to these thrilling flashcards, unfortunately my hand isn’t fully under my control either. My body is often ignoring my thoughts. I look at my flashcards. You ask me to touch ‘tree,’ for example, and though I can clearly differentiate between tree, house, boy and whatever cards you have arrayed, my hand doesn’t consistently obey me. My mind is screaming, “Don’t touch house!” It goes to house. Your notes say, “Ido is frustrated in session today.” Yes, frustration often occurs when you can’t show your intelligence and neurological forces impede communication between mind and body and experts then conclude that you are not cognitively processing human speech.

In my childhood I feared I would remain stuck forever in this horrible trap, but I was truly fortunate to be freed when I was 7 when my mother realized my mind was intact, and both my parents searched to find a way to help me communicate without tactile support.

Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.

11 comments:

  1. Ido, thanks for writing this. As a person who works with people experiencing Autism, it gives me a lot to think about and questions how I may approach the situation.

    Do you have any practical suggestions for professionals, to help us identify how to help a non-speaking individual begin to communicate? For example, I assume it's not as easy as presenting various communication methods in front of them and assuming that, if they don't use it, it doesn't work. I'd be interested to know your thoughts on how finding the right communication medium could be achieved. Thanks!

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  2. What a powerful article - I am so glad that you have written this book - I will be sure to spread the word so others can see and read it. Thanks again.

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  3. Thank you so much for doing this and be our kids' voice. Can I share this with other parents?

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  4. Dear Ido,
    Thank you SO MUCH for enlightening us! I want you to know that there is a small but growing group of professionals dedicated to doing just that: moving treatment beyond simple behavioral techniques to treat individuals with ASD as a whole person, with intact minds and emotions, challenged by very real "output" challenges. We are with you, and hope you can continue to teach us.
    Warmly,
    Mona Delahooke,Ph.D.
    The Profectum foundation

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    1. This is true Ido! I saw Ms. Delahooke speak this weekend! I learned a great deal from her talk and how I may better understand what my children may be experiencing. The Profectum foundation is part of a huge shift that I believe is taking place thanks to people such as yourself and Ms. Delahooke. Your voice is heard and your words are resonating with so many!

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  5. Hello Ido,
    I think your book should be required reading for all special ed teachers. It changes how people think about autism. My daughter, who has autism and is also non-speaking, has shared a similar journey as yours. The anguish of being misunderstood for years, finding and learning RPM, and now the elation of finally finding her voice. If you have the opportunity, please visit her blog at http://www.opinionslearnedfromrpmandautism.com . The purpose of her blog is to let everyone know that individuals with autism are smart. Keep up the great work of educating doctors, teachers and the many others who you have reached through your speeches, book, blog and facebook. You are making a difference!
    Sue Hamlin, Ann's Mom

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  6. Thank you a million times Ido. When I read your words about your childhood and experience with ABA it INFORMS all my decisions for my children. I do find it shameful that so many parents are NOT given a diverse toolbox when their kids get diagnosed. Nope, instead this idea that ABA is the only way to help is scared into us. My son, I believe, has many of the struggles you have gone through and you have given us a map to help him. So thank you Ido!

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  7. Ido, like your mom, I knew my son was cognitively capable of comprehending the world, even had an incredibly wry sense of humor (contrary to the APA dictates!) Because I knew better, I am in my final year of a PhD in Clinical Psychology and my dissertation is on the experience of children and their families with autism (I like to say in an autism culture) participating in a Catholic faith community. I am doing this out of frustration because, while I knew my son understood our traditions and practices, proving it to my priest was near impossible. I found that disheartening, and later discovered my son was not the only one, So many families seem to leave churches because they are judged, or their kids are judged. You guys (you and my son) both have to jump through hoops to prove you understand when there are adults who do not understand it, yet do not have to prove it. The differences in your neurological functioning are just differences. You function at a completely different level and method. That does NOT mean you are not valuable to this world or your family. It is the rest of the typically developing world that seems to have trouble understanding YOUR language. Hopefully, we can change that.

    I found your writing to be extremely helpful and I am using your experiences in your book in my dissertation work. Thank you for persevering. The gift you have to offer this world is so much greater than anyone possibly realizes!

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  8. My mistakes were proof to my instructors of my lack of comprehension or intelligence, so we did the same boring, baby lessons year after boring year. How I dreamed of being able to facebook

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  9. Ido thanks for sharing and writing this blog. It's a good thing that you share experience that will help the other people with the same disorder. Autism has a natural way to be treated. Naturopathy experts like Dr. Sundardas will help in diagnosing the causes of the health disorder and checked what nutrients is needed. They have heaps of assessments that will help in treating autism. We hope that you can visit our website at www.naturaltherapies.com or email us enquiries@sundardasnaturopathy.com, this the website of Dr. Sundardas.

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  10. Hi Ido, I am the mother of a boy with high functioning autism that has been mainstreamed in school, but has had terrible behavior problems. I had done a few months of ABA and noticed it wasn't working. It left me in tears feeling helpless to help my little boy, and it was akin to dog training imo. I have recently, in the last few weeks, been researching what people on the spectrum themselves have to say, and it's opened my eyes to what a terrible ordeal I have been putting him through! I am trying to better understand him and celebrate his gifts instead of focusing on making him act neurotypical. I love him so much, and if I'd have known better, I would never have listened to these so-called "experts" I have been talking with Kristine Barnett and getting tons of ideas on how to understand him better.
    So far, I have learned that I need to lighten up on the strict rules I had for screen time and iPad usage and just let him explore what he wants. I have been using visual drawings to communicate when he is stressed out. But I have so much more to learn, and everything I have been using has been the whole Autism Speaks approach. I'm done with that, done with people who try to tell me that I'm too passive to discipline him, and I'm now trying to advocate for him at his school without the arsenal of the ABA specialist in my back pocket. I feel like I am alone against an army of people, including my husband, who think this old approach is best (even though we've made no progress), and I need some resources and support on my side. Is there an organization of advocates that can help me navigate the IEP process with this new, less popular mindset? And is there tutoring or something that could connect him with role models who have gone through the same things he has? Any help you can offer me would be greatly appreciated!

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