My Speech at the Profectum Conference

I believe it is time to look at severe autism in a new way. The theories that determine treatment for young children are based on long held beliefs that autism is a processing problem of language and conceptual thinking.According to some theories we cannot recognize emotions, we cannot visually distinguish relatives and friends from other faces, or know right from wrong. Some have even declared that we even cannot recognize a human being from an object.That’s pretty bad, huh.

Is this iPad living, or an object? Maybe incessant drills on flashcards will clear that up. Perhaps I have been introduced to all of you by an object, not a person. How can I tell that a person is not a machine? The same way that all of you can tell.

I guess the solution for decades has been flashcard drills to drill on nouns, verbs, people’s names, commands, and on and on. It is a familiar start in life for a lot of us. But why should I be drilled on what I already know as well as everyone else? From my point of view, it’s a pretty insulting premise.

To base a person’s education on these assumptions is risky because a boring day of ‘what is the weather?’ drills, or touch your nose lessons, does not teach what one needs to learn. I suppose if people really don’t understand, or cannot recognize the difference between mom and dad, or mom and a table, these common methods might help.

But autism is not that disorder.

The autism I have is not a language processing problem or a lack of understanding anything. I want this point crystal clear. My mind is fully, totally intact. In fact, my experience is that most nonverbal autistic people have intact minds too.

Here is your challenge. Stop looking at our weird movements, blank faces, lack of speech, trouble handwriting, poor self control, and on and on, as proof of intellectual delay. It may look like it, but I think looks here deceive. Believe me when I tell you that if I could look normal on the outside I would do it immediately. I am normal on the inside.

That’s different than what people with Asperger’s say, or what Temple Grandin writes in her books. But that’s because Asperger’s Syndrome in severe form is not what I have.

I hope that’s clear because it confuses many professionals. Different neurological problems have the same DSM diagnosis. That’s confusing. I think it would be like putting AIDS and head colds under the same heading because they’re both viruses. Too much is covered under the heading, Autism Spectrum Disorder, and this misleads an understanding of what I have.

So now, let me tell you what I have. Autism for me is a severe problem.

How would you like it if your thoughts didn’t reach your body consistently? What I mean is that your thoughts are intact but internally neurological forces block them from your motor system so that messages get messed up, or ignored, or occasionally they get through. That can resemble not understanding, but it is not.

Nevertheless, the person cannot necessarily demonstrate intact thinking due to the motor issues that block speaking, handwriting, gestures, facial expressions, initiating actions, and more. So, smart intact people may spend years, or even their whole lives, in a body that traps them behind weird movements and unreliable, inconsistent responses. More than that, neurological forces may affect the sensory system, making sounds too loud or visual stimulation overwhelming. The frustration is compounded by autism experts who dumb down learning because of their belief that autism is a language processing problem.

When I was young I did ABA. No offense to any ABA people here, but for me it was a horrid experience. I found those early years of drills and reinforcements an exercise in boredom because I already knew the vocabulary they taught. I just had unreliable hands to point to the flashcards accurately. The baby talk, and most frustrating, the supervision sessions that never worked on my real challenges, made me feel frustrated and angry. Worse, the theories probably delayed my mom’s ability to recognize my true potential by several years, at least.

No offense to any Floortime people here, but I never got much out of my sessions because my play was so delayed when I was small. I craved more than the games I got. But my Floortime was minimal. I was drowning in ABA drills instead.

No offense to OT people here, but what I desperately needed was motor control and physical fitness, and I never got that. I got swings that spun me. Once until I barfed.

No offense to special ed teachers, but when I couldn’t show my intelligence, I still was thinking. But all I got was one plus one, ABC and the weather. My recommendation is to teach at least some age appropriate lessons and books, even before the student can express his thoughts. Who knows how much is locked inside?

My helpers were kind and well meaning, but the way I was taught missed my real needs for communication and motor control simply because the methods assumed I did not understand spoken language and therefore needed a rudimentary lifestyle.

What helped? Soma did. She gave me the ability to type on a letter board when I was seven through her method, Rapid Prompt Method, or RPM. This has progressed to a keyboard and ipad. Because of this, I am a general education student, college bound, on the high honor roll in AP classes and even learning a foreign language. I work out with a trainer and I hike and run and row on a machine at home. I also took piano lessons. These things helped me.

To all the professionals I offended earlier, sorry. I admire your devotion, compassion and caring. I challenge you to see your nonverbal autistic students differently and with high expectations for learning.

Parents, don’t give up hope. If you see intelligence, even if brief, then intelligence is there. It’s most likely inconsistent because of those frustrating neurological forces I mentioned.

Communication is a blessing. Lack of communication is a curse. Let’s give kids the blessing of communication and a real hope for tomorrow.

Thank you.

www.profectum.org

16 responses to “My Speech at the Profectum Conference

  1. Excellent article. Again, would you be interested in joining my son Ben as another participant with nonverbal autism in the Communication and Autism Research Project (CARP)? CARP is trying to arrange good scientific research of communication through typing for persons with nonverbal autism. Anyone else interested, including professionals and family? Arthur Golden at golden.arthur@gmail.com

  2. This is perfection Ido. I have shared this on my Facebook page as I feel everyone needs to read this. I want you to know that your book is the first one I ever read that truly resonated with the autism my son has. I am happy to say he is now flourishing through RPM, being supported at the public school, and making his voice heard everyday. He even has his own blog too. Thank you for speaking out and helping so many understand. Thanks especially for helping lead others to find the right help so their children could finally communicate too.

  3. just perfect. Thank you a million times for this. Now to get others to understand. You’ve changed what I see in my son. And continue to remind me to believe in him, more than what anyone else says.

  4. Hello Ido — Your post has some good points, especially the realization that “autism spectrum disorder” is a term that groups a whole gamut of differences or disabilities as if they were related and similar. I suspect one day in the near future people will completely rethink the definition of autism. I find your description of the motor disconnect between mind and mouth as one I’ve never heard mentioned or discussed. Would like to hear more on that. Thanks for the post — Mark

  5. Thank you so much for a beautiful written honest and so brave
    Statement would love to meet you in person
    All the best in your future and please keep up the
    Hopeful lessons all family’s want and need to know
    Much love
    May family

  6. I love this speech. This is how I understand my brother’s autism, but it is so hard to explain to other people. Thank you!

  7. Emma Cladiskaren

    Ido, really great job! Think I loved what you said. You represented us non verbal autistic people with dignity and respect. I am so glad you illuminated so many minds at the conference. Keep up this good sharing. See you soon.
    Love Emma

  8. Hello. You don’t know me but I have to tell you how much your book”Ido in Autismland ” has affected my heart and soul. First- THANK YOU!! A million times over. I am so grateful to your bravery and persistence of hope. I am a special educator and I have just been trying to teach myself the RPM after I watched a documentary called ” A Mother’s Courage: Talking back to Autism”. It showed Soma and her amazing method and I ordered her books so I can learn more and so can my aides. I am so inspired by you and want to do right by my students( not all have autism but most do and they are all seen as non- verbal and trapped in Autsimland) I am ashamed at not having done a better job teaching them things they need to know and am in the processing of trying to change that and figure out where to start for a true education. I know it is more important to begin rather than to know. I will learn to and your courage and honesty and beauty has inspired me. Thank you for helping me to wake up and be a better teacher. I have always wanted to help my students, of course, and now I believe and want to help them free themselves too. God- willing, I will progress at this and many more people with Autsim will be able to show others what they have inside and add to beauty of our world. Thank you for starting me off. I am grateful beyond measure.

  9. Pingback: What I’ve been reading — March 2015 | ASD Dad

  10. K.K. -I read your message to Ido and through the Communication and Autism Research Project (CARP) I hope we can work together help persons with nonverbal autism. Also, as a retired lawyer, I feel I should check with you that for your own protection that you are obtaining written informed consent from the parents before instituting RPM You can email at golden.arthur@gmail.com

  11. Ido, I heard your speech at Profectum two weeks ago along with two other moms from our sons’ DIR school in the Bay Area. Your words have enlightened us beyond words. Today we reposted your speech onto our Facebook page for every parent and teacher here to read. We thank you Ido. Our sons thank you!!!

    Maya

  12. Thank you for your poignant essay. I am a Marriage and Family Therapist who has had the privilege of working with many children and teens with ASD, and what was formerly called Asperger’s or PDD. I have worked with a client who used a letter board in session, and I have heard about what you describe in your essay. I am not trained in ABA nor Floor Time, so I cannot speak to those methods; however, I hope that all professionals take heed, listen to what you and others have to say, and continue finding ways to effectively facilitate communication. After all, you are the experts.

  13. Dear Ido,
    your book has been such a blessing and help in my life, and therefore in my son’s. Because of you the information about Soma’s method is spreading.

    I just learned about another extremely helpful approach and I wanted to share it with you and your many readers! I hope you and others will check it out!!
    http://www.nids.net/

    Thank you for sharing your story and your life! You are giving us hope!

  14. Ido,
    Just read this speech and loved it! Thank you for giving voice to much of what I try to explain but can’t. As Sam head’s off to college, I need to remember to refer others to your blog and Facebook page for increased understanding!

    You go gettem’, Ido!

    Kathy C.

  15. Thank you a thousand times for writing this! It’s exactly what I’ve been telling my sons teachers and therapists for the past 4 yrs since he was diagnosed. I’ve had to fight tooth and nail to get him educated. I ended up homeschooling because so many think so little of nonverbal Autistics. You help explain it all so beautifully. Thank u! Thank u! Thank u!!

  16. Fantastic letter I hope more people read it. Our friends son is autistic and has gone Kant things you went through. His parents went all over and finally found the answer . The young man is now in his late forties and is typing and he his brilliant… It’s sad that it took so long to help these children and adults with autism

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