nonverbal autism

Nonverbal Autism and Making the Right Decision

| 9 Comments

Lately I have been struggling with knowing what’s right for my son. We are lucky in Minnesota to have many therapies available for kids with autism, but not all are the right fit. You see, my son has nonverbal autism and that makes things tricky.

We’ve tried early childhood special education, Fraser, and in-home applied behavioral analysis (ABA). I liked things about all of them but have had some issues as well. My son is on the “severe” side of the autism spectrum.

Though I hate to use that word when talking about my son, it’s hard to describe how autism affects him without it. He is sweet. He is loving. He tests at low developmental ages, but we know how smart he is. People, even those who should know better, tend to overlook intelligence in kids that are nonverbal. He understands, but he can not make his body show you that he understands. One book that gives great insight into the world of nonverbal people with autism like my son is The Reason I Jump by Naoki Higashida.

The insight this book gave me guides my choice of therapies, and how they address my son’s ability to communicate. When he started his current speech therapy, they wanted to start with signing. This is a common tool used to help nonverbal children bypass the difficulties of verbal speech and communicate with simple sign language. But my son had been working hard on PECS (picture communication) for over a year and was making progress.

I had my doubts but ended up relying on their expertise to know what was best for my son. We tried signing. Nine months went by without my son picking up a single sign. Obviously, this was not working. So I went against their recommendation and bought him an iPad.

We’ve seen so much progress with it. He started communicating wants and expressions, and showing understanding of what others were saying to him through the app – Proloquo2go. So his school therapists decided to try it. With them, progress has been slow, with months spent on one picture. Not a series of one picture communication at a time, but one picture. Total. He spends all day at school pushing a picture of popcorn for every kernel of popcorn he gets. This does not reflect my son’s true ability.

At home, we started with a field of four pictures strung together. He does great with it, crafting complete thoughts. After all, our goal is to teach him to communicate, not to push pictures in order to get a reward.

So I decided to talk to another speech therapist to see if this was a typical way to teach communication on an iPad. Immediately, I could see we were on the same page. She told me the first thing she would do was have a salesperson come out with a bunch of Augmentative and Alternative Communication (AAC) devices and pick the best one for my son, ones that insurance would cover. Then she would start teaching things one step above where he is at to get him to learn how to open folders and navigate the iPad. Clearly this will achieve our goal of teaching my son to communicate, freely, using this adaptive device.

But I am concerned that the team at his ABA school will not collaborate with another therapist. I don’t want to see him stuck, spending his days pushing pictures on an iPad to get rewards from his teachers. That’s not functional or building life-long skills.

I’m lost. I want to follow my intuition, believing in my son’s abilities and choose the tools that will truly help him. Finding a support team that can see the potential in a nonverbal child with autism is difficult. Too often we sell our kids short and teach down to where we think they are, instead of where we want them to end up.

It’s so hard to know what’s right for your child. But you never know what your child is capable of until you try. I will keep leaping and have faith in my son.

Author: Jessica

Jessica Jenness parents three kids and has been practicing yoga since her first pregnancy nine years ago. Since her son's autism diagnosis she sought out ways to bring the healing techniques of yoga to her son and others living with autism. She's passionate about bringing these techniques of calming, relaxation, focus, and balance to all children with autism.

9 Comments

  1. You definitely are not lost. YOU, in fact, see quite clearly what works for your son. You want to continually raise the bar for him and have seen the success that that brings. Trust your gut. My son is 20. We did ABA starting when he was three, continued the very structured practice of it (discrete trials, etc.) through second grade, and followed its principles through all of his schooling. I was his first home teacher. I was (still am) an ABA devotee. It doesn’t mean I didn’t challenge the system. Again, go with your gut. You’re his mom. YOU know. Best of luck!

    • Thank you Lisa!! You are so right, I will keep going with my gut 🙂 Do you have any advice as to how to keep up the principles through schooling. I feel once my son enters the school district (in a year or so, he’s almost 7) I fear they will not push him to his potential. I like ABA for how well in uses motivation. But it just hasn’t worked as well for communication. Thank you!
      Jessica

  2. It would be so nice to call non-speaking autism just that. Calling it “non-verbal” includes the assumption that people on the spectrum who do not /or do not reliably speak- “have no language” which in turn makes us talk to them in short phrases only(shoe on, go potty, good job) and will prevent us from ever exposing them to higher, or more age-appropriate, language, thus in effect making sure they never learn (so convinced are we, from the start, that they would not understand anyway).
    There are more and more people proving this assumption wrong.
    Please check out what Soma Mukhopadhyay’s Rapid Prompting Method has to offer(halo-soma.org). You can learn it yourself;there is a highly qualified provider in Green Bay (Erika Anderson) and I am here- qualified in spec ed and in ASD -and qualified to work one on one with students using RPM.
    But as I said-many parents work at home-learning the system themselves. It is the best chance non/less/unreliably speaking kids have at learning academics and at slowly learning to communicate messages THAT THEY THEMSELVES GENERATE (without depending on stickers, velcro or others to tell them what to say).
    But no matter what you do-good luck. Your child knows you are working for him!

    • I have been very interested in the Rapid Prompting Method for my non-speaking 11 year old autistic son. Is there a way to connect with you directly for more information?

      • Nicole, I’d be very happy to get in touch-I am in the regular phone book(still have a land line :)). Please feel free to call. Then I can also give you my e-mail of course. Thank you!

    • Hello Alexandra (Sandy) I would love to get more information. I have looked up some stuff on RPM after watching a documentary that Soma was in. Do I need to fly to TX to get trained? Thank you I am excited to learn more about RPM

  3. Jessica, what a wonderful article on your son. He is SO lucky that you are listening to him. Your concerns and worries for what will happen are well-founded. Trust what you know to be true for him.

  4. My 9 years old in non-speaking too, we did all what you did for your son. Years of speech therapy with no result, iPad (Proloco 2 go & Speak for yourself) and sign language with very minimal progress. Recently I got her AAC device (Nova Chat 7) and we are doing Rapid Prompting Method, we are having some progress she is able to communicate some of her needs.
    If you want to try the AAC device, you can have a free loaner device for one month from the Minnesota Star program http://mn.gov/admin/star/. You can try as many devices as you want till you find the appropriate device that work for your son. Contact me if you need more information about AAC device or RPM

  5. Hi Jessica, To get a thorough understanding of Soma’s Rapid Prompting Method-a camp is recommended at her clinic, you are right, for you and for your child to learn.
    But many parents work on their own, using the (really no-nonsense and to the point) guidance found in Soma’s books (on her website http://www.halo-soma.org) and on the facebook support website.
    Some local parents work with Erika Anderson-who is the highest qualified-after Soma, visiting Green Bay periodically or having her come(they share costs with other families). there are also more providers that travel(and are authorized to give workshops).
    Some local families, I work with-and I am surely not bad at all :), I have parental and student experience with RPM and have gone through the training I mentioned earlier in 2009, I am a licensed ESL, special ed and ASD teacher-but have not pursued a higher qualification in RPM (therefore am authorized to work 1;1 but not to give workshops). Soma rightfully wants to make sure that when RPM is implemented-it is done right!
    Feel free to contact me anytime-I am in the phonebook(Alexandra Oppenheimer) and no matter which way it goes, always eager to help a family get started-because the kids and the families deserve it!
    Bests of luck

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