Having More Say in Our Lives

My hope is that one day autistic people will be taught to communicate as young as possible. It certainly would be interesting to see how life would be if instead of drills and remedial lessons kids got lessons in age appropriate lessons, typing for communication and exercise specifically to awaken the mind/body connection. In my opinion, it is likely that the severe autism symptoms might be lessened because the urge to escape a frustrating reality will be less intense. One day I hope to put my ideas into a program for other people with autism. It will be the world’s first program for people with autism run by a person with autism.

Isn’t that pathetic?

How many autism organizations have people with autism consulting them or on their boards? If inclusion and diversity are important, why do so many autism experts fail to consult people who have autism? If I had an organization for blind people, I think consulting with people who are blind would be valuable. If I had an organization for people in wheelchairs, I think understanding their experiences would make treatment better suited to real needs. Must those of us with neurological issues be isolated from our own treatment options? My hope is to change this discriminatory practice.

16 responses to “Having More Say in Our Lives

  1. Thank you Ido! I am an educational consultant and you have already made a difference for me in my work. Best to you as you pursue your future goals and bring your passion to more communities.

  2. Yes, Ido. Please do put together a program. I would surely be interested in checking it out. And keep writing, because it is great to hear your perspective. Thanks.

  3. Ido,

    This blog entry is very timely. Based on the instructions from my 42 year-old son Ben, with nonverbal autism who communicates through typing, we have started the Communication and Autism Research Project (CARP) and would welcome your advice. As I commented on another public blog over 2 weeks ago, ” I am personally arranging funding for a study of another method of independent communication through typing other than FC or RPM which I hope will be shown to have overcome the limitations of FC and RPM. This other method is from a non-English speaking country and has been discussed in the US with at least one leading opponent of FC.” If you or others are interested please email us at golden.arthur@gmail.com

    Arthur Golden of Jerusalem Israel

  4. Right on! Completely agree. Let us know how we can support your worthy goals.

    Clarissa Kripke

  5. Also, the Autistic Self Advocacy Network (run by and for autistic people) is working on these issues. Are you a member http://www.autisticadvocacy.org? I know they will be working on a toolkit on behavioral health soon which will address some of your concerns.

  6. I agree with you 100%. My son had the same teacher from K-6. She “got” him and even though they continued with preschool type curriculum with him, (oh my poor child) she’d treat him age appropriately and constantly was looking for clues into the students minds and their physical needs. When he changed schools and started jr. High I was flabbergasted. His new teacher was great, did all he could think to do but this was only his second year teaching in this class and really needed help from the IEP TEAM. This is when I found out that the IEP team was clueless and unwilling to listen. That was last year. Now I have him at home trying to learn RPM. It seems difficult for me, which then I think makes him feel uncomfortable. He is almost 14 and still hasn’t be enable to unlock his voice. Gosh I feel for him, we will continue, together… we will continue.

  7. Dear Ido,
    There needs to be change and I applaud you for stepping out and fighting for that change. In my small way I am learning to hear the children i work with and ask them what they want rather than their parents or carers. I need to do a lot more work on how to listen properly though! Any pointers for where I can go to get the true information about what is best will be highly regarded. There is much that needs to change.

  8. I like. Fabulous post…

  9. Also to Clarissa Kripke – thanks for the link.

  10. I think that’s a wonderful ambition, Ido!

  11. First I want to say thank you Ido for opening my eyes to what I am possibly doing to my non-verbal 3 year old. She already hates when people speak to her like they do to her baby sister (who is 1). My 3 year old only says maybe 1 or 2 words here and there but it never stopped her from expressing needs or being the unique and funny little girl she is. I would love to see the lesson plans you have in mind come true someday soon. I have my daughter in a preschool class that is a mix of neuro-typical children and special needs. She has already mastered things that the neuro-typical children are doing and more. We plan on getting her a Naubi so she can start typing. Would you think 3 is too young to start typing? Any recommendations to help her?

    • If she cannot express her thoughts except by typing she should start young, even if her typing is that of an intelligent three year old. It is so important that our kids have a way to express themselves.
      Tracy (Ido’s mom)

  12. YOU’RE A REAL SMART GUY, YOU ARE BRILLANT, start consulting with these autism centers, they need you!! for real
    They need your experience, ideas, creativity

  13. Ido, I think your thoughts on this are dead on. I wanted to let you know, that the Autism Treatment Center of America (http://www.option.org) has a senior staffer who was severely autistic! There are no drills in what they do either. And they very much respect the autistic individual and the ism. Just thought you might be interested.

  14. Hi Ido,

    Could you consider writing about the mind body disconnect? I would love to know what exercises or programs help your mind body connection. I really appreciate everything you do for the Autism community!

    • I recommend walking, running, gym work, stretching, rowing, sit-ups, push-ups, and so on.
      I address the issue in a few essays in my book. Also, my trainer, Mike Ramirez, did a guest post on fitness and autism here awhile back that may be helpful.

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