On Education and Communication; A Message to Parents, Professionals and People with Autism

School is finished at last. The year was tough but I learned a lot. I read great literature. I loved US history and understand my wonderful nation better. Chemistry was fascinating too. Learning how our universe is composed is thrilling to me. Me gusta aprender español también. I learned a lot about math and animal science too. All this is thanks to my index finger and typing my thoughts.

I have the desire to pursue a college degree. One more year of high school and this dream will be a reality. Over spring break I visited many colleges with my parents. It will be different than all day, every day, of high school in one place going room to room. But I will have the opportunity to get more education in biology, neuroscience and other fields, and maybe I can help improve our understanding of autism in more ways.

I push myself to get good grades. It matters to me that my grades show my intelligence. My teachers were great. They pretty easily adjusted to my mode of communication and welcomed me warmly. My life is so rich now. I have friends in school. I love to go.

My message is to parents who wonder if their child can learn. Only the most determined parents will find out. If you are working with experts like those from my early life, they limit your child in low expectations. They tell you that being impaired in body is being impaired in mind. They let you work on skills that barely progress and tell you that your child isn’t advanced enough to write.

If you keep on listening to them they will keep low expectations for a lifetime. I know it is hard to be the parent who disagrees. I watched my mom try to deal with my ABA team when I began to communicate at seven. I have  watched our friends fight school district attitudes. They went through a big hard slog. They also got their kids typing and into general education. More than anything else, the parents believed in the possibility that their child had more in them than they were told. Parents, you have to trust your guts. You see your kid all day in real life. They see a drill or a lesson, and these moments where the motor issues of severe autism are at their worst.

Professionals, I have a message for you too. I used to think you were all clueless and control freaks. This is not to say that people were not warm or kind because I liked my clueless teachers as people but resented their attitude of certainty. If you work with autism, be prepared to accept that a degree in psychology or sociology or speech pathology or occupational therapy isn’t giving an insight into more than symptoms. My brain and how it’s impaired is a guessing game, even for neurologists, so I think the certainty that many practitioners have when it comes to autism is really puzzling. Being open-minded and admitting that the brain is vast and mysterious is required, in my opinion, by anyone who works with severely autistic people.

Now I have a message for people with autism who can’t yet communicate, and I ask parents to read my essay to their kids, Have hope. More than anything, have determination. Life outside your head and stims is really worth striving for. I believe soon there will be too many people with autism who type to keep insisting we are one in a million. I am fighting for your freedom and so are others. Hang in there.

20 responses to “On Education and Communication; A Message to Parents, Professionals and People with Autism

  1. Ido, keep up the fight and know that you are leading the way for everyone touched by autism. You have a beautiful heart and the clear insight that comes from an outstanding mind. Thank you!

  2. So very well put Ido. You are such an inspiration to our family. My daughter Emma also loved your post and wrote her comments on Emma’s Hope Book today.

  3. Ido,
    I work as an EA and have been working with a delightful, intelligent, soft-hearted young man who also happens to have been diagnosed with autism and has less verbal usage. I feel as though you have helped me to understand him, his brain. The voice (spoken or written) of one with autism speaks so much more purely than those of the textbooks, the therapists and other professionals. I look forward to reading your book over the summer break, and learning more at the school of Ido!
    Blessings to you this day,
    Carole

  4. Thank you, Ido. You are making a huge difference! We are striving and passing it on! Keep shining your light!

  5. Ido,

    Found your blog through Ariane’s latest post on Emma’s Hope Book. I’m glad I followed the link, because this is a wonderful post. Will have to check out the rest of your blog as well!

    So much wise advice for people.

    I wrote a poem on the weekend inspired by Emma and the difficulties she has with her body/mind disconnect, and having read the excerpts from your book that Ariane has put up in her posts on you (and your book), I was wondering how it might speak to you. If you are interested, it’s at For Emma: Words and Voices on my blog. [/end self-promotion]

    You and Emma are a look into our future, and it gives me a great deal of hope to read of you both. I do believe that the future of autistics is in good hands with you.

    🙂 tagAught

  6. IDA! I am a HUGE fan. I have a 12 year old with Autism and your writing is helping me help him. I would LOVE to put a link on my blog to your website, but need your permission first 🙂 also, take a peak at http://www.mypuzzlingpiece.com! My blog is geared toward newly diagnosed ASD parents, especially military families. I would LOVE any of your insight on ANYTHING because I think you are a genius. I am buying your book this week—after I read it I might pass it onto my son to read, too.

    More than anything—-THANK YOU. I would be honored to post a link to your website on my blog, so take a peak if you’d like 🙂

    VERY respectfully,

    Rachele

    • Of course you may link to my blog. Thank you! Please feel free to contact me with your questions. If you’d like you can write to me at facebook, idoinautismland.

  7. Thank you, Ida. I too found your page via Emma’s Hope Book and I have now become a fan!

  8. Thank you for sharing this essay with the world, Ido! I’m currently working to overcome the misconceptions and myths too! As a neurologic music therapist, I have been learning to address the brain-body disconnect that is found in autism and the autistic clients in our practice are finding their voices and improved motor functioning. All of this is extremely wonderful for the person with autism, but quite difficult at times for others involved with the individual to embrace. I understand the paradigm shift that must occur, but don’t understand the reluctance of area schools to see non-verbal autistics from an assumption of competence. Since becoming trained in neurologic music therapy and doing professional supervision with experienced colleagues in this area Suzanne Oliver,Blythe LaGasse, and Michelle Hardy, I have had to forget everything I ever thought I knew about autism and approach it again with an open mind and a greater understanding of the neurologic differences – not the social, communicative, and sensory differences that were always the focus during my undergraduate training. I’ve learned to see that it’s all related and completely unrelated to cognitive ability.
    I’m excited to share with you about a new school I am starting to give our students and families a CHOICE when their current schools are unwilling to support the communication and sensory needs of their child with severe autism. Our ACCESS Academy (Assuming Competence Can Ensure Student Success) will support students to access general education while giving them communication and sensory supports by highly trained staff who are committed to a presumption of competence, despite what the students’ bodies can or cannot do. We started our 8-week Summer Enrichment Program this week and are thrilled with the response from our students! One student posted on Facebook after class on Monday, “I had a fantastic day at access academy. It is where I belong. I want a school like access. My body needs help. The people are awesome there. At access I am part of a new wave of thinking!” Another student who is also enrolled in a local ABA program stated, “I’m so thankful to be here.” And yet another communicated, “I don’t want to have to go back to my old school.” Thank you, Ido, for inspiring me and so many others to fight this fight and create a way for these students! Each of them are so worth it and they have so much to teach us… if only we will listen! For more information: http://www.optimalrhythms.org or http://www.facebook.com/optimalrhythms . We are a new non-profit organization and are looking for compassionate individuals who would like to see our school become a reality for these students this fall, with potential for our school model to be replicated in other communities once established. Please message me if you or or other readers are interested in partnering to increase awareness and give voices to our students!

  9. Dear Ido. I hope you will read my post and that you will find the time to answer. I am a friend of a non verbal autistic guy. He types, like you, but unfortunately we didnt have many chances to type together so I could never really get some answers from him. I’ve met him last summer, and we spent together at least one day pro week. I never felt so happy, and he is the only person I’m happy to spend time with. I always learn from him. He is so wise and strong and i admire him you can not imagine how much. Now I study abroad, so I see him whenever I go back home (every two months or so). I will go with him and his family in holidays in few weeks, for 10 days and I can not wait. the thing is that I know he feels everything. He feels what I feel. You can not lie in anyway because he knows whats inside yourself. I like him 100% and even though is hard to understand him, I try my best. I accept him from every point of view. little by little Im starting to know him. But I am developing a block lately. I know that he is a superior mind and a superior soul. He is highly sensitive and highly intelligent. My problem is that I can not say one word when I am in his presence. I am afraid to seem stupid. I am afraid also that he doesnt care if I speak about myself. I feel sometimes maybe is just useless. So we stay together, we run, walk, hand in hand, play, stay in nature. I try to do what he does. But I can not say one word. I feel so small when I am with him. Sometimes it looks like he doesnt want me around. Maybe he feels something about me that he doesnt like, maybe sometimes my energy is very low and im not very positive (especially now that I am having hard time with my life). How to behave? Do I have to talk to him? I could type last week just a sentence, I asked him if there is something he wants to tell me, or something he wants me to do, do I do something wrong, can he please help me understand. He just answered that he appreciates that I stay with him even though he can not speak. He wrote “come again” and also, that he likes our walking. You know, is impossible to type in privacy with him because when he types the parents have to be around. I would like to understand what to do for our friendship to become better. I really care for him and I want him yo be happy with me, I want to be a good friend. I hope you can help me! A hug and please keep be the wonderful and inspiring person that you are.

    • He is a person who can’t speak. Until he can communicate fluently it is not ok to guess his thoughts and feelings because often the guesses can be incorrect. Just be nice. Treat him like a normal person. He doesn’t read your mind, though he may be insightful.

  10. Ido this is a great post. Would you be interested in taking a look at my son Henry’s new blog? I feel you two are kindred spirits. He is a non verbal autistic and uses a letter board to communicate. I’d love to link back to your blog on his blog too if that’s ok. Great insights and meaningful encouragement here Ido, we appreciate it.

    https://rosesareredforautism.wordpress.com/

  11. Ido, your blog is incredibly inspiring and informative, especially for parents like me who are learning so much from older kids with autism.

    One question: it’s not possible for me to share links to your posts via Facebook because, according to them, your site *might be spam* (!). You might want to look into that, as I think your words need to be shared.

    Keep up the great writing!

    • Thanks for your kind words. We have been looking into the problem with facebook for a long time- even changed blog sites. Many letters have been written. Nothing has changed. The problem is McAfee. Any letters written to facebook or Mcafee would be appreciated.

  12. Ido,
    I’ve been following your blog ever since your LA Times article, and I think I’ve been forever changed! Thank you!! I am beginning a new career as a preschool teacher, and I’m taking a class on incorporating special needs children in the classroom. Any advice you can give me as a pre-k teacher?
    Blessings,
    Courtney

  13. Thank you so much for enlightening us Ido. This will help me tremendously with my own 2 ‘non talkers’ 😉 Please continue to educate the world, they need it badly. Congrats on your educational pursuits and many blessings for your future.

  14. You write so eloquently!

    What you say is very important.

    I’m so glad you are liking school now and and that your life is rich!

  15. I just love reading your words. i need to hear them. often! my son could be you one day. i need to keep fighting for his voice to come out in whatever form that he needs. thank you for your encouragement!! good luck to you and congratulations on all your success and hard work so far!!! keep up the good work 🙂

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