celebrate autism?

Tate, age 3

I just don’t get it when I hear a parent of a child with autism say they “celebrate” their autism. I have heard parents say, “I wouldn’t change anything about him.” What are they thinking? I’d change Tate in a heartbeat if I could and I have been doing everything I can since he was a toddler to minimize as many of the stereotypical behaviors of autism that I can. 

Here are my black and white thoughts…. If your child was paralyzed and you knew he’d be able to walk with a surgery or a special piece of equipment, would you say, “I accept his paralysis and will not seek help or a cure?” If your baby was born deaf, would you “celebrate” his deafness or would you seek a physician that was able to repair his ears and give him the ability to hear? There is no cure for autism but there are many ways to minimize the behaviors that will cause that child to miss out on opportunities. If you truly celebrate the child’s disability and accept it then would you be asking therapists for help, reading to find the latest research, and seeking the advice of specialists in the field of their disability? 

I met a parent many years ago that told me she had a son with autism and wouldn’t change him for anything. In the same conversation she told me about all the therapies and programs he was participating in. ???? Wait a minute? Didn’t you say, you wouldn’t change him? I’d do ANYTHING I could possibly do to give Tate a better life, a life free of autism. I’d let them take the brain from my own head and give it to him if it would mean he could live the rest of his life without autism. I do NOT celebrate autism. 

Does that mean I have less love for Tate than the parent who says they “celebrate” autism? I think not. I actually have a hard time believing that anyone really celebrates autism. I would believe they have come to ACCEPT autism, as I have, and what they celebrate is the love they have for their child. I love Tate with all my being but I HATE autism. Autism has stolen the REAL Tate from me. He will never become the person he should have been.  What? You think I have it backward? You say the Tate with autism is the impaired Tate. If he had been born blind and I found a doctor who could give him sight, would I have been wrong to do it? Would I have been a bad parent for not accepting the blindness and the “real” Tate? If a person has a life-long disability (deafness, blindness….) they learn to live with it and their parents accept it and they love that child, disabled or not. BUT, they give that child every opportunity available. They teach them sign language, how to read Braille, or anything else they need. I somehow doubt they ever celebrate the deafness or blindness. I do NOT celebrate autism. I do NOT celebrate his sensory issues and I try to help him overcome them. I do NOT celebrate his inability to communicate well and he gets lots of teaching and therapy. I do NOT celebrate his social deficits and we work on them constantly. I do NOT celebrate autism…. But I DO love Tate. Tate is a blessing to me. Autism is not a blessing for Tate or for me either. 

See this post for more about this topic: Is autism a disability?
And PLEASE, if you are an autism parent or a person with autism who feels very differently than this, read this post before you comment: What did I do to deserve this?  

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What is discrete trial training?

As soon as I discovered that Tate had autism, I began researching treatments. There are so many ideas out there. I wanted to find a treatment that was proven to have results. I wanted a “cure” for autism. I read the book "Let Me Hear Your Voice" by Catherine Maurice. In her book she told of the huge differences between her children before and after the therapy she provided. I wanted recovery for Tate! The only research based treatment I found was called Applied Behavior Analysis (ABA) therapy. This was the same therapy that Maurice had talked about in her book. The initial research was done by Dr. Ivar Lovaas and published in 1987. Lovaas had made great gains with the children he had worked with.  “Best practice” was 25-40 hours a week of discrete trial. Discrete trials are well-defined tasks with a beginning and end. Big tasks are broken down into small steps and are taught systematically. The end goal might be for a child to be able to recognize and match shapes, but it would be broken down into very small pieces. It might start with the child holding a card that had a black circle on a white background. The teacher would give very simple instructions, often just one word like “match.” The child would need to match the card he was holding to a card in front of him. There might be only two cards in front of him at first: one with a square on it and one with the circle that matched. When he mastered that task, a third card would be added to the table, then a forth card, making the task harder. When the child was able to match the circle correctly after five consecutive trials, the task might switch to matching squares. After all the shapes had been mastered, the teacher might introduce matching a blue square to a red square, showing the child that shapes were still shapes, no matter what the color. After switching colors and mastering several shapes in a variety of colors, we might try having the child match a three-dimensional shape, like a square block, to the card with the square or a ball to the card with a circle. There would be many small steps mastered so that the child with autism could see the much bigger picture. All these kinds of things are learned by the typically developing child during his regular play. It doesn’t take hours of sitting with a teacher to learn simple concepts. This discrete trial method of teaching is how Tate learned almost everything. It took many hours and it was tedious. The end results were worth every minute we spent doing these discrete trials. 

In my constant search for ways to help Tate, I read of many therapies that did not have research to back them up. I read about diets, vitamins, use of steroids, holding therapy, animal-based therapies, music therapy, and several other things. I was willing to try almost anything to help Tate, but nothing had research results behind it except the ABA. I do believe some of the other things help some kids. Swimming with dolphins would be a dream for a lot of kids and it might even help a child with autism in some ways but it is not a valid therapy in my mind.  Music therapy would be very valuable to the child that likes music as well. I know it would not have gotten the results we got with ABA and discrete trial though.    

I have had a few people try to convince me to take Tate off milk and wheat. There are about a dozen foods Tate will eat. If I took him off milk and wheat then there would be almost nothing left for him to eat. I know Tate well enough to know he would probably go for days without eating before I gave in and let him have his crackers, bread and milk back. If I really thought the diet would “cure” Tate’s autism then I’d throw out every last cracker and piece of bread in the house. The kids that I know on the diets, still have autism, most of them are lower functioning than Tate. They feel better on the diets and Tate probably would too. If you feel better then you behave better and can learn better, I am sure.  I just do not think the benefits, if any, would outweigh the difficulty in our home. There are few studies I've seen and no real research to back up the diet therapies that I've seen.  

When Tate was waiting to be diagnosed by a professional, I sent out a letter to our relatives and some close friends. We didn’t want to make dozens of phone calls, answering all the same questions over and over. I explained what we were going through.  We had already decided we would be jumping into ABA therapy with both feet. I asked my friends and family to support us in our decision and not to buy into all the theories about “cures” they would hear about. There were no cures and only one research based therapy we were going to use. Immediately, I started hearing back from people with the suggestions I had specifically asked them not to give me. I heard: Tate needed to be going to a chiropractor, begin homeopathic treatments, use vitamins, take him off milk, and sign him up for horse-back riding lessons. Lots of people were just sure the government gave grants and all kinds of money to parents to help kids with autism too. 

I am very happy with the outcome of the early intervention program we provided for Tate. I am confident he benefitted a lot from the things we did. I don’t think I will ever look back and say I should have done anything differently. Had I hoped for a complete “recovery” from autism? Yes. Is it realistic to hope for such a thing? Probably not. Did God answer my prayers for Tate? Absolutely! 

Also by this author: "15 Truths of Parenting Special Needs Kids."

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