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ASPartOfMe
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14 Apr 2019, 3:44 am

Adam Dreyfus column: Defeating the isolation of autism - one proven method at a time

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In the past several months, we’ve seen some lively discussion in our community around autism education. While I didn’t agree with everything I read, I always appreciate when the topic of autism comes up. I see it as an opportunity for me to listen, learn and engage on an issue near and dear to me as the director of the Sarah Dooley Center for Autism at St. Joseph’s Villa.

We know what autism is; we know how to treat it; and we can celebrate how these proven educational methods have made a difference in the lives of children, adults and their families.

Autism spectrum disorder is a developmental disorder that hinders a person’s ability to communicate and interact. The diagnosis includes the presence of repetitive behaviors that can further isolate the individual. These challenges with communicating can result in behaviors that are confusing and frustrating, but I have never, in all of my years working with students on the spectrum, met an individual who did not yearn to connect with other people.

One of the beauties of autism is that it’s very sensitive to expert intervention, and research-based early education strategies derived from Applied Behavioral Analysis (ABA) have proved to be effective. ABA and evidence-based systematic instruction are widely recognized as the gold standard for autism education. These standards have been codified for decades, and continue to guide treatments in autism schools across the country.

And these are the methods we are using at the Sarah Dooley Center. We believe that most of the behaviors that bring children to our doors are directly related to their lack of communication and social skills. These are very teachable skills. Last year alone, our students learned 10,000 new words! One of our parents shared a story about how she went shopping with her son and took him to the fresh pineapples. Her anxiety climbed as he shook his head. She didn’t know what to do. He loved pineapples. She said she thought he was going to have a meltdown, and she felt helpless. He took her hand and walked with her to the canned fruit aisle. He took a can of pineapples off the shelf, handed it to her and said, “I want can pineapples.” She cried as relief flooded through her. She didn’t know, until that moment, that he could articulate his wants so clearly. That simple sentence was the result of months of patient work by the staff at the Sarah Dooley Center.

While the Villa campus offers a wide range of resources, from sensory gardens to work training sites, we fully believe in the importance of getting children with autism out into the community. Community-based instruction is key in helping them integrate with society outside of school. Our weekly trips to local restaurants, parks, stores and farms provide an immense amount of therapeutic and educational opportunity for developing life skills, which families can then build on at home. When they’re out in the world, students are able to learn how to communicate what they want and advocate for themselves. The success story above would not have happened without combining intensive classroom instruction with real-world application. How else would he have known where the canned pineapples were?

Isolation can be one of the biggest fears parents face when a child is diagnosed with autism. But when we all come together as a community under proven strategies and open, meaningful dialogue, that isolation doesn’t stand a chance.

So typically smug know it all. Behind all the nice words is the same old, same old. Parents feelings are the only things that count, autism is a social communications “problem” as if sensory and executive functioning issues barely exist, that we want to connect with other people means we want to connect as much and connect in NT ways.

I said it before a number of times but despite all the hell of not being diagnosed until age 55, the damage from both the authorities in my life any myself being clueless about a fundamental part of who am, I still would rather have grown up when I did then have to go to school with such “intensive” therapies and administrators that thought like him. While that comparison will always be hypothetical every time I read an article like this I become more convinced my theory is correct.

Recently a poster was conflicted because she was becoming an ABA therapist and was seeing the problems. I did not know how to answer her because I can not remotely see how I could not be destroyed doing that line of work and since this way of thinking is so ubiquitous in American schools I could not see how Autistics entering the field could make a difference. Upon further thought just because I would be destroyed does not mean every autistic entering the field would be. I don’t think Autistics can make ABA a good thing, looking at the world the wrong way is fundamental to what it is. The reality is ABA is getting more predominate by the day so it is going to be around for the foreseeable future. Enough Autistics entering the field can lesson the damage, individual autistic ABA therapists can help or at least lessen the damage to their client and that is more then worthy.


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magz
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14 Apr 2019, 5:07 am

There have been a thread on this before: ABA is just a method of training. It can me applied with different goals.
Unfortunately, at least in the US, it's typically aimed at making children appear less autistic to please their anxious parents (why did no one ask about the anxiety of the children?).
The same methodology could be used with more useful goals.
It's just a tool.
The problem is with philosophy behind using this tool.

Quote:
How else would he have known where the canned pineapples were?
Lol, you would be surprised! Just like Carly Fleischmann's parents were surprised when it turned out she could type :D

By the way, the mother from the story seems a very poor communicator. When a child drags me to something at a store, it seems obvious to me to suspect they want it. Didn't it occur to her because he was autistic? Why did he need to go to canned fruit shelf before she understood? Why did she get it only after he spoke? I don't get it. And they dare say autistic people lack in nonverbal communication.


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14 Apr 2019, 11:28 am

I agree with you ASPartOfMe. I am glad I got through school and life without services. I agree the goals are to force austists to behave in NT ways. It is disturbing to observe.


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ASPartOfMe
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14 Apr 2019, 2:13 pm

blazingstar wrote:
I agree with you ASPartOfMe. I am glad I got through school and life without services. I agree the goals are to force austists to behave in NT ways. It is disturbing to observe.

To make that statement that I am glad I grew up in the 60s and 70s rather then now makes me sad, angry, and frustrated because my school years were bad enough that it left lasting damage. There is still some residual issues from that era. We are supposed to make progress not go backwards. While there has been important progress in some areas that we are forcing this on people in their formative years of there life is disgusting.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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14 Apr 2019, 2:37 pm

I generally agree with your statement. Fortunately I grew up in a time before the term Aspie or High Functioning Autism was even mention, diagnosed or treated. The problem is stress not behavior. If you solve the stress component, you will relieve the behavior component.


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14 Apr 2019, 7:56 pm

NTs attempting to eliminate the unique behaviors of autistic people through ABA is plain wrong. It reminds me of that old Japanese proverb: The nail that sticks out gets hammered down. In other words, be the same or be exterminated.

I really don't get why ABA supporters are enforcing sameness when they don't want US to be engaged in sameness (e.g. routines/schedules). It's rather contradictory. Think about it: will NT society be happy if the world's population is nothing but a bunch of clones of the same person they think is ideal for society's survival? That's the kind of message I get from the very philosophy of ABA.


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19 May 2019, 8:06 am

I was diagnosed late so I wouldn't have gotten services anyway but from what I understand of ABA, it seems to be very inflammatory to autistic people