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.

38 responses to “A Challenge to Autism Professionals

  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!

  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.

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

  4. Thank you! How? How did your Mum and Dad help you to communicate? My little boy has so much to offer the world but HOW do you build that bridge??

  5. I have been reading sections of your book aloud to teachers working to get an Autism Authorization in the state of Callifornia as part of weekly class activities! It has been very powerful and a great opener for discussion for each topic.

  6. Ido in a Autismland

    Hi Nate,
    I recommend you check out Soma Mukhopadhyay’s webpage at http://www.halo-soma.org and look into her theories.

  7. Ido, this is quite possibly the best thing I’ve read. It’s poignant, concise and I just want to share it with everyone I know! You have no idea how your words affect change for those who still need a voice. I look forward to reading your book! I’d love to share your writing on my blog or vise versa. I’m so thankful to others who found their voice and paved the way so that I, as a parent, would know in my heart and mind that communication was possible. Now my daughter, Emma has a voice and honestly it’s because of people like you who share your story.

  8. Aimee Fernback

    Hi, Ido,
    I have a 10 year old son with severe autism, who has all the same stims and interests you describe in your brave, wonderful book. I read it and cried, realizing that my prayers to God of the last ten years for help in knowing how to help my son have been finally answered. Thank you so much for writing. I have always known that my son wanted to tell me something, and now I truly understand what his world has been like. I understand your frustrations and was mad at God for a while, too…but you need to know that God is using both your abilities and your autism to set other people with autism free. He cares about you and about my son, and now that we know these things about what it’s like to have autism, my son will have a meaningful life as you do. Thank you for allowing God to use your autism for good. You are an overcomer, and I am going to make all of my son’s teachers read your book and learn from it. My son can now write to me from his heart. He told me that he loves me, which is the best gift ever. Thank you so much for being an ambassador between those who have autism and those who love them and need to understand.

  9. Hi Ido,
    I am thinking about translating this piece. What do you think? I think it is a very relevant one (and would be very relevant to people working with autistic people down in Brazil as well).

  10. Hello, Ido,
    As someone who was an ABA therapist for 6 years, I’ve read your blog with great interest. Please know that many, perhaps most, ABA therapists do ABA therapy because they believe it to be the most helpful for people with autism. I never thought my clients were “dumb” and in fact, would often talk with other ABA therapists about how we could see intelligence in our clients’ eyes and wonder how we could help them to express it. The places I worked for were open to trying methods other than strict ABA, even though one of them was headed by someone who had studied under Lovaas. The vast majority of autism professionals that I worked with only wanted to help those with autism any way they could. I’m sorry that you have encountered others who were more concerned with their pet theory/ideology than with people with autism.

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  16. Hello Ido,

    My own autistic son is 20 and living in assisted accommodation. He has very limited speech and what we believe to be a either a speech impediment or a genuine inability to form the correct sounds (we’ll never know, as he obviously can’t be tested either way as he verbally just can’t comply). I spent years telling so-called “professionals” not to talk down to him as though he were stupid – he is fully aware of language and – like you – can understand every word. We have to talk to him in the third person if we’re asking him a question (“How is Rhys?” or “What has Rhys done today?”) because otherwise he isn’t quite sure how to respond (he’s echolaic, so we needed a way to communicate in which he understood he wasn’t being asked to repeat the words). He communicates with his very limited (often monosyllable) vocabulary, picture cards and gesturing, and has now learned to write a few basic sentences (I’m so proud of him!)

    Reading this has helped me to understand my son’s lack of speech a little more, and I think you are amazing. Keep on spreading your message!


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  19. I need help with and understanding my 19 (almost 20) year old son who is incredibly non compliant from time to time, may become physically aggressive, will not be guided to choose with the future in mind, yet is quite intellectually, athletically and musically gifted, has many social skills, and can be absolutely charming. The issue is that NO ONE can tell him what needs to be done and he will not do it unless he wants to. regardless of how reasonable the request. His autism is a sort of hidden autism but it is definitely there, and his anti social opposition is going to do him in, regardless of his many talents and positive qualities. HELP!

    • I think it is hard to help if I don’t know him. It is common for young adults to want to be independent and for teenagers to be oppositional. Maybe a book or class about working with oppositional teens will help you work with him.

  20. Maria Taheny

    I provide therapy for autistic adults and I can say from experience, this is pretty normal for any young adult, neurotypical or otherwise. Autism just makes the process much more scary for caregivers. The higher the IQ, the younger the process begins. Having autism does not mean they don’t have hopes and dreams. Rather than trying to get him to listen to your guidance, start asking him questions about those hopes and dreams. Meet him where he is. Be very cautious about not telling him what to do and avoid being negative. Instead, brainstorm ideas as to how he can achieve his dreams. It may require thinking outside the box but once he realizes you are on his side, he will come to you for guidance. It is never an easy process but the harder the process, the greater the reward.

    Maria Taheny, PhD

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  22. When and at what age were you introduced to an ipad or finger board pointing? I’m desperate to break through to my daughter whose autistic and about to be 5. She’s just not concerned with communicating it seems at all. I know she’s intelligent but explaining it to any professional or school setting is extremely difficult 🙁

    • Hi Craig,
      I was introduced to letter board at seven. IPad is a more advanced skill and comes later. I am developing an online course to teach you (the parent) the skills to teach your kids, and will let people know when it’s ready. Step one is to talk to her normally and to expose her to age appropriate books and spelling. I suggest you read one of Soma’s books too about the Rapid Prompt Method too.

  23. Hi Ido
    Are you kindly able to confirm which speaking apps you currently use?
    My daughter is 6 years old & non verbal. However her vocabulary is amazing.
    Really appreciate this.

  24. Hi everyone,

    My name is Holly. I’m an MSc (pre-qualifying) Speech and Language Therapy student, and I’m trying to research autistic people’s experiences of Applied Behavioural Analysis (ABA). Please see https://twitter.com/AbAresearch for more information. Thank you.

  25. Hi Ido! What a valuable perspective you have to offer the world! I’m an RBT doing ABA therapy with kids. I feel it’s my duty as someone in such a trusted position to actively seek out autistic perspectives and pitfalls of the kind of therapy I’m doing. Thankfully from what I’ve read, all of the complaints about ABA I’ve read online are not at all applicable to what I do, nor what I was trained and taught by my company. (as I understand it, ABA is used as a blanket term to get insurance approval) anyway that was true up until this post. I’m fascinated to know more about what that pivotal moment was where your mother realized your mind is intact, how you were able to learn more sophisticated communication so quickly, and in general do you have any advice for me? I understand this is a lot of information to ask of you. If you could lead me to some of your other posts or books which may answer my questions I will certainly read them. Thank you for your advocacy

  26. Hey Ido, I tried to post a comment previously so, sorry if this is redundant. You have such an extremely valuable perspective which needs to be shared with the world. I’m so thankful that you have the motivation and the means to do so much advocacy! I am 21 and I’m an RBT doing ABA therapy with children with ASD, multiple of which are nonverbal. I have some questions which I hope may inform my improvement as a service provider. These are: 1: what was the breakthrough moment that let your mom know that you desperately needed more sophisticated tools of communication? What should I be looking for? (I do search incessantly for opportunities to “pierce the veil”) 2: What helped you to learn these more sophisticated tools of communication? What tools and teaching techniques do you think every NV child should have the opportunity to use? and 3: If I were to make a youtube video for other RBTs, ABA practitioners, and service providers (for those on the spectrum specifically) what would be some of the most important pitfalls to tell them to avoid? 4: I know this is a lot and you’ve probably already covered these topics. I do not expect you to repeat yourself so please direct me to yours or others’ blog posts and books that will answer these specific questions. If you also have any suggestions for less “babyish” games or tasks to try with kids aged 4-7 and or the NV demographic specifically please let me know. The rest of this comment is just me talking not asking for resources. I’m so sorry that your experience with ABA was unpleasant. I’m so sorry you were underestimated by the people who never should have done that. As a person with my job, I think it’s my duty to expose myself to autistic perspectives, complaints about ABA and scrutinize my own actions professionally. So far all of the complaints I’ve heard about ABA have been really not applicable to my work and how I’ve been taught and trained by my company. This blog post has exposed me to the first complaint about ABA that hits too close to home for comfort. I have always very much so treated my clients as if they are capable of so much more than they can show me at the moment. I know each of them truly are capable of more than I could know. It’s both the most hopeful and most tragic aspect of my work. This is why recently I’ve been somewhat struggling with striking a balance between pushing kids too much and not enough. I’ve always preferred to treat kids as being more capable than less capable. I want to avoid learned helplessness and like I said I know each of them are so much more capable than they are able to articulate. (by “pushing” I simply mean doing things like math or prompting independence, etc) I also want to mention that ABA is often used as a blanket term for all kinds of services just to get insurance approval. In my company we focus on empowering children to be independent and to be able to communicate. We don’t teach masking and we don’t punish. Thank you so much for your advocacy Ido. You are the living breathing example of what I want so badly for my clients, which is simply to be heard. Well, I mean it doesn’t have to be out loud vocal sound waves but… you know what I mean lol

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  30. Dear Ido,

    My name is Mackenzie. I really appreciate what you have done for your community by sharing your story. You are an astute thinker. A lot of what you have communicated is so downright “sensical.” What you have said shows so much insight into the human condition. An example of what I mean by downright “sensical” is conveyed by when you had mentioned, “…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.” I think it is your insight and awareness into society and yourself, and your interactions between society and yourself that show that you are astute and downright “sensical.” You are a strong individual for enduring all that you have, especially concerning what you have communicated about having been “trapped.”

    I have a question for you concerning ABA- first I’ll give a little background about myself. Unlike you, I haven’t had people question my intelligence, but I have had so many people question my emotional intelligence- so I can relate in that sense. I was diagnosed with PDD-NOS and later on as Asperger’s. I was diagnosed at a time where people thought that people with Asperger’s had a lack of empathy. While my empathy in terms of “flexibility” is a little bit low and needs improvement, my ability to empathize emotionally is high.

    I want to contribute to the relations, somehow, between people with autism and people without. As a starting point, I was considering becoming a RBT. I am still learning about ABA and have not decided as to if I am going to pursue being a RBT. If I do pursue becoming a RBT, are there ways to make someone feel dignified and respectful of their intelligence, especially while working with those that are nonverbal? Or would you have any ideas or resources that you would recommend, as a starting point, to helping people with autism outside of ABA? Ideally, I would want to start helping people with Autism, now, while not having completed my Bachelor’s, yet.

    Thank you,

    • Hi Mackenzie,
      There are many ways to contribute that are not ABA. I have seen people create fitness programs, work as tutors, become communication partners, and so on. There are many options if you are creative and meet more typers who can share with you what they want/need.
      Thanks for your kind words and best of luck in your search.

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