Category Archives: autism perceptions

Some Thoughts to a Thought Provoking Post

This post from Emma’s Hope Book blog indicates the stress of parents by a system that makes it harder for them to relate to their child. In my opinion, the list of symptoms reduces people to behaviors and makes it harder to see the person’s personhood. It is ironic because a symptom of autism is to play with part of a toy, but what about professionals who focus on part of a person? If I liked to look at letters it was bad. If they like to look at only symptoms, it’s treatment. This is hard on parents because, “Hands down,” “Hands quiet,” and on and on, become the key of interacting.

I remember hugging my mom when I was young and an expert remarked, “Wow, he sure stims on you a lot.” So in the symptom-based worldview even hugging my mom was a sign of my inability. Of course, if I didn’t hug I would have been declared distant and disinterested in people. Experts should be really wary of assuming they know, when they really don’t know yet, what is in the heads of severely autistic kids. In these cases it is like putting words into someone’s mouth–all ten of them.

The point Ariane makes of seeing the child less pathologized is spot on. Let’s listen to people with autism who can communicate to be partners, guides, teachers, role models and proof that though we may look or act autistic because of having autism, we are fully human, fully intelligent and deserving of peoples’ respect.

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.

The Courage to Hear, to Learn, to Change

Guts means the courage to change. My book, my speeches, and my efforts have challenged people who have gotten accustomed to seeing severe autism in a traditional way. We need rudimentary lessons. We need drills to learn words, understand emotions, recognize the people in our lives, notice gender. We need baby talk because we don’t understand English or speech. We need M&Ms because we have no motivation. It is an illusion to imagine we can be more.
So, I am honored and amazed when parents and educators write to me that my explanations changed this thinking after years of seeing it one way. One person said it “hit him like an anvil on the head.” One described how he was, “shaken to the core.” One mom wrote a long letter about how she had always believed that the potential for her son to type was “delusional,” but after reading my book she understood how he could be smart but trapped internally. Now she types with him freely. He is 20 and finally able to communicate his ideas and finally is seen as intelligent. Brave moms, Brave dads, because they now have to face systems that have to look at why their methods could not see this possibility in the person with autism.
“I now speak normally with my son and it has changed everything,” I hear over and over. “I see my students differently,” I hear as well. One brave teacher wrote that she now wonders if she has been going at it wrong for decades. Kudos to them for thinking openly. It is guts.
I will tell you one lady with guts is my old teacher from when I was small. I write in my book how I loved her in spite of my frustration and boredom in her class due to babyish lessons and repetition. Fate has plans and recently my mom ran into her many times after years of no contact. After several weeks she told my mom she would like to read my book. I knew it would be painful for her because I talk about her- not by name, but she would know. I wrote her a note. After reading my book she came to my mom with a letter for me. She wrote that she tried to read it through my eyes. She was powerfully impacted and was determined to teach differently, to see her students differently too. She has been teaching a long time. This is guts and I admire her.