Four Myths about Autism You can Safely Forget

Autism is getting a lot of press this month, what with April being Autism Awareness month and all. What of this information is fact? What of it is myth?

Ellen of the awesome blog, "Love that Max," has posted an interview with Dr. Gil Tippy on truths and myths about autism that you won't want to miss. In case you haven't heard of Dr. Tippy before (as I had not), he is the clinical director of New York City's Rebecca School for children with autism. He also co-authored a book with Dr. Stanley Greenspan (a name you probably have heard many times) called Respecting Autism. After reading this interveiw, I'm eager to get my mitts on the book!

Go ahead and read it; Dr. Tippy's interview will open in another window and you can come right back here to discuss it together.

Ah, you're back. Great! Wasn't that an interesting interview? Did you agree with his point of view? Did it clash with what you've thought about kids with autism?

Just to sum up, here are the four myths his interview addresses:

     1) Autism is a disorder of memory;
     2) Kids with ASDs are not interested in communicating;
     3) Kid’s with ASDs must be taught differently, by giving them a reward to get them what we want them to do; and
     4) Kids with ASDs tend to be intellectually disabled.

Now, I've always admired Dr. Greenspan and his approach to working with children having autism. It just seems so, well...respectful. He would have us honor children's efforts to communicate and interact and learn and then draw out a little bit more. It's a "whole child" approach, and that is something that has always resonated well with me. It's pretty much a structured variation to the natural, "whole life" teaching style we used with our daughter. She has Rett syndrome, a disorder in the Autism Spectrum that brings with it a number of severe physical disabilities as well.

I particularly appreciate Dr. Tippy's comments on behavior as communication. Kids with Autism Spectrum Disorders do try to communicate with us; they just lack our conventions and and we don't know how to interpret their uniquely expressed messages sometimes. That doesn't mean they have nothing to say. It means we need to figure out what they intend and help them find appropriate conventions to share that.

Let me illustrate with the story of a wonderful 9-year-old boy we'll call Marcos (not his real name) who was severely impacted by autism. One spring I took a long-term substitute position in Marcos' special ed classroom. For the first few days, Marcos screamed in his corner doing his discrete trial tasks while the other students met with me at the table for math. His paraprofessional did all she had been taught to try to extinguish his shrieking and clawing. Both Marcos and Mrs. S. were miserable and mentally bruised (ok...Mrs. S might have had some black and blue battle scars, too).

When I looked over at Marcos, I noticed his gaze steadily fixed on the other students, as if longing to be with them. When the paraprofessional would block his view with her body to help direct his focus to the task at his desk, his screaming and hitting would intensify. Between his gaze and his frustrated outbursts at having his gaze blocked, there was a clear message.

Much to the horror of the aides that had been working in the classroom all year, the following Monday I brought him to the table at math time. They must have feared terribly for the safety of the other kids. But he was telling us something important with his lashing out...

I gave Marcos communication cards to which he could point so he had a way to communicate with the group. He shocked us all with the amount of knowledge he had gained by eavesdropping on the group lessons. Even more, Marcos amazed everyone in the room with his quiet and well-behaved demeanor at the table. He didn't hit or bite, he waited while others took their turns, he answered questions at his turn (correctly, I might add). While he still needed Mrs. S. to cue him, this child's behavior was absolutely appropriate while at the table.

It seems Marcos' message had been clear; he only needed a way to express it appropriately. I gave him a "group time" symbol card so he now could request to join the others. His violent behavior nearly disappeared for the rest of the school year.

This story also underscores the deep-seated reservations about ABA (Applied Behavior Analysis) I've had since my earliest days of Special Education teacher training. Something just didn't add up for me. It seemed artificial and, in its purest form, suggested to me a lack of respect for the uniqueness of the person sitting at the other end of our cup of M&Ms or sticker chart or stack of tokens. It was VERY afirming to me to read Dr. Tippy's take on ABA. Seems I'm not alone in my hesitations.

After all, how does ABA support that child who lacks the physical ability to perform as directed? Or the child too distracted by some sensory confusion to perform? Or the child who gets the bigger picture and who wants to move on to rich and meaningful experiences instead of sticking to isolated performance tasks? What happens to a child's initiative when they come to us trying to express something they feel is important, and we stifle that for the sake of performance?

Do you see the common thread of performance running through those questions? This bothers me terribly.

Children are children, not circus monkeys. I don't want my kids to perform. I want them to feel valued, to love learning, to see connections with both the detailed eye and the grander view.

I'm not saying kids can't learn through ABA. They can and they do. I've met some pretty amazing kids that have learned heaps through ABA. There are some truly awesome ABA providers in this world who do believe the best of the children in their care. But, but, but... the children learn richness and beauty and feel appreciated for the unique and wonderful things they bring to the table? Do they thirst to learn more? Do they learn "how the world works?" I daresay that generalizing a skill should not merely be learning to perform it in a new environment, but rather understanding how that skill fits into the fabric of life.

Can kids having autism or other related disabilities learn through methods outside ABA? Absolutely! My own daughter is a testament to this. Her yearning for knowledge all through elementary and middle school is something she could only have gained through being encouraged to explore and discover and reason. Her imagination is rich for all the creative play and extensive reading of fiction. Mind you, the bulk of this was something we had to physically create and lead her through, but it can be done with kids having some pretty severe impairments (if you want some ideas for this, take a look at the incredible blog, Adaptions4Kidz).

"Marcos" is another testament. The discrete trial task he was protesting was one-to-one correspondance of objects to the correct numeral. Yet when brought to the table, he demonstrated that he had not only perfectly mastered this skill, but could count up correct change using real coins. This knowledge was something he had picked up through observing lessons directed at other students from a distance. He understood a much bigger application of the small skill that was being drilled and wanted a way to apply it meaningfully in a social context. 

I know Dr. Tippy's point of view--and mine--isn't going to sit pretty with some members of the ASD world. There are also some Rett parents who are staunch supporters of ABA who disagree. And that's okay. The important thing is that every child is given a method to learn that fits them. My guess is that there are a lot of children who could thrive on teaching methods that are naturalistic and respectful. We owe it to them to learn about these methods and provide whatever fits best.

So I'll jump off my soapbox...what kind of reaction has this discussion stirred in you?


vlmaples said...

Amen, sister! Preach it! A little respect and a lot of open-minded observation go a long way!

Rose-Marie said...

Boy, Valerie, isn't that the truth?

One of Ellen's readers at "Love that Max" made a great comment about how the principles of respectful teaching and observation go far beyond kids with autism to us ALL. I sure do appreciate that perspective!

By the way...any puppy updates? I'm dying to hear!

Emma said...

This discussion has made me even more confused than I currently am (to be absolutely honest !). I'm about to put my daughter (with Rett Syndrome) into a mainstream school next year when she starts Grade 1 and I have been having a mental battle with myself about it and whether it's the right place for her. She will not have the amount of physical support she needs to access the curriculum but at the special school she will be segregated from the mainstream students and not have access to what is a real normal social life. There is nothing in Australia that supports a child with severe physical disabilities and with intellectual capability. I like this idea of supporting a child who wants more but with a child with severe physical impairments how do you help the teacher find out...

Rose-Marie said...

Emma, this is a tough situation you are in. You will probably have to offer the school lots of encouragement and hands-on support to make the curriculum accessible, but the mainstream placement has potential to be fabulous. We LOVED our daughter's first grade class; the teacher's can-do attitude made it nothing short of amazing. Outside the presence of a 1:1 aide to push her wheelchair and provide eye gaze choices for response, there were few other accommodations. Still our daughter was able to stay right in the middle of the pack of her typical peers.

If you want to contact me privately, I would be happy to walk you through some of the things the teacher (and we) did to make that Gr. 1 experience a positive learning experience. There were up years and down ones in the mainstream placement (teacher attitude was 90% of the success or failure, with aide attitude the other 10%), but it worked well most of our daughter's elem and middle school years.

Hang in might have to show the staff that they can be successful in creating access for your daughter. I'm happy to help you with that.