There is no one to blame, myself included.

In my blog post “15 Truths of Parenting a Special Needs Child” I touched on a topic I have been meaning to expand on for a while. It was Truth number twelve: “Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.” Mostly we don’t because we are too busy!

Tate and Sydney, Dec. 2014

My daughter’s disability was a direct result of her birth mother’s poor choices. Fetal Alcohol Syndrome is a disability a child is born with that is completely avoidable and caused by a pregnant mother’s alcohol consumption. There is a direct cause and we know what it is! Parents of children with autism do not have that. We do not KNOW and it is maddening sometimes. We have these little nagging doubts once in a while. Like: What if, someday it is discovered, taking ibuprofen while you are pregnant causes autism? I did that. I took ibuprofen sometimes. What if, research in the future tells us living near high voltage lines is the cause of autism? We built our home very near power lines. What if eating fish while you are pregnant is what causes babies to be born with autism? I ate an occasional tuna sandwich during those nine months. What if I did this to him? Most of the time those little nagging doubts are silent but once in a while they whisper to me.

I have read the newer research suggesting autism is genetic and begins in the womb and I believe it is an accurate premise. However, I live with one foot in the autism community where somewhere between 25% and 50% of parents believe immunizations are to blame. So, I hear it. A lot. And, although I know there is really no research to back it up and I do not believe immunizations are to blame…. What if? I know Tate was “quirky” from infancy, but he did regress at age two and sometimes, once in a while, this little tiny droplet of dissonance creeps in and whispers to me, “Maybe they are right. Maybe YOU did this terrible thing to your child. You may have saved him from polio, measles, mumps, rubella, and many other diseases but you caused him brain damage.” And then, the voice of reason drowns out the whisper and I know that there is no one to blame, myself included. 

We’ve come a long way since “the refrigerator mom” theory. Some of you might be young enough that you have never heard of this theory. A man named Leo Kanner wrote a paper in 1943 that blamed a child’s autism on their parents. He believed that a parent’s lack of love and attention (warmth) for their children caused autism in their children. Bruno Bettleheim jumped on board with Kanner and wrote articles in the fifties and sixties echoing the same theory. Bettleheim compared the parents of children with autism to guards in a prison camp and their homes to concentration camps. I have never for a minute believed poor parenting caused my child to have autism. Never for a minute. But, I am just the tiniest bit defensive about this because I am not sure everyone else in society understands that. You cannot love the autism out of someone! And by the way, you cannot spank it out of someone either.

Back when I first learned what autism is and before I had done much reading or research, I did worry and wonder a lot more often if I had contributed to Tate’s developmental delays. Had I given him enough attention? Maybe if I’d read to him a little more or taken his bottle away a little earlier. Maybe if we’d watched a little less television. Tate’s favorite show at age two was The Teletubbies. At one point I actually worried that too much Tinky-Winky, Po, Laa-Laa, and Dipsy had caused Tate’s autism. 

The tiny dropper full of occasional doubts and guilt I have over the cause of autism is usually silenced by reason fairly quickly. But there are others that badger me sometimes-- Things that are directly related to Tate’s autism. I think about the things autism stole from the other kids. Those three years of early intervention we did with Tate made me absent in my other kids’ lives for much of that time. I was here but I was not focused on much of anything besides helping Tate. They all understand how important the early intervention was. They all understand I would have done the same for any one of them. They never complained. They never rebelled. They were all helpful and supportive. I gave seventy or eighty percent of myself to Tate during that time and the other six kids shared what was left. This voice does not whisper as quietly as the other and does not listen to reason as well. Sometimes it talks in an outdoor voice and I have to get very stern with it. I reason, “What else could I have done? I am only one person. My baby needed me to help him. The kids understand. They are all turning out fine!” Then the nagging doubts and the guilt are quiet. For a while.

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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