Autism – Our story of recovery (Part 3)

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If you haven’t read Part 2 yet, you can read here!

Adventures with Behavior Therapy

Have you heard of this Autism puzzle? Yes, the puzzle is the symbol for Autism, probably because most of us don’t really know what is going on with these children. After our diagnosis meeting it was like somebody took all the puzzle pieces and threw them off a cliff. Our psychologist gave us several tips on what to do and what books would be helpful during that visit. One in particular was called “What You Can Do Right Now to Help Your Child with Autism”. She told us about the concept of “joining” and a wonderful program called the Son-Rise Program (which was the turning point in our journey and I will be discussing in a later chapter). It was a lot of information! I had so many questions and was completely overwhelmed. The mountain we were about to climb looked enormous. To complicate things she recommended something different in her report than what she had told us that day. The list of to do’s was long, including 40 hours of behavior therapy (also known as ABA), which later I found out was the very opposite of the Son-Rise Program. Very confusing to say the least and to be honest, looking back, most of what was on that report was just not helpful. But it was a start. At that time we followed it as best as we could.

leo_crySince ABA was the most popular intervention at the time (or so I thought), I talked to our lovely First Steps (you can read about this program on part 2) case manager and she found us a therapist right away. Alice was lovely. She was boisterous, bubbly and fun. She was also very honest and open with me. Even though Leo was non-verbal, she heard him babbling and said with confidence that he would talk again. She shared that she had worked with much older and more aggressive kids before and was excited to work with a 2-year old. In one instance she said one of the kids she worked with tried to hit her with a baseball bat and she was done working with older kids because of this. After her assessment, we got to see Alice 3 times a week for a of couple hours. I am not going to lie. In the beginning the sessions were grueling. Very lovingly and gently Alice would wrestle with our son; to get him to sit down for a little bit of time or to get him to follow a directive. He cried so much during those sessions. She explained to me that if I came to the rescue I would not be helping him. She assured me that as we did that he was going to come around and learn what he was supposed to do. In my mind she was the expert, so I sat and watched with a heavy heart. I was to learn all the techniques to help my child to behave the way society (or whomever came up with ABA) saw as appropriate.

Nobody wants his or her child to be rejected by society. That was my biggest fear. Today I can see most of the decisions I made during this journey that were based on fear did not work out. Alice told me that children with Autism were not capable to learn naturally and using the ABA method would help them learn to behave appropriately. There was a list of things ABA needed to address, especially the repetitive behavior that presents itself with kids diagnosed with Autism. In our case the spinning, the jumping, the hand flapping, (among other behaviors I can’t even remember anymore) had to be stopped.   Little did I know that those behaviors were my son’s way to cope with the world at that time, and later would become the bridge we would use to inspire him to connect with us once again.

Another very common trait in Autism is the lack of eye contact. So Alice would hold his face close so he would look at her. She would hold him down so he would stay seated when she asked him to sit in place. She would put her fingers under Leo_windowhis armpits to get him to stand up when his body went limp. Our son was very resistant to the Alice.  She loved him; I knew she wanted the best for him and the best for our family. Most people working with special needs children have love in their heart and want to help. Can you ever go wrong with love? In this case you can. The problem lies in the perspective a therapist, aid or psychologist is coming from. I have found that to them, teaching a child to behave by their definition of what was appropriate superseded the need to build a relationship with that child. Another problem I found was that ABA seemed to be focused on teaching a skill by having a child follow a drill over and over again. Because children with Autism tend to be more rigid in their routine and the way they behave, teaching them to learn a skill with drills seemed to accentuate our son’s rigidity. If things didn’t happen exactly the same way he expected, he would become unhappy and aggressive. In turn I would be unhappy and frustrated, adding more “fuel to the fire”. It was a very dark time in my life.

During our ABA days I would sometimes ask myself these question: What if a stranger came up to my son and told him to come with them? Would he do it? Or what if I asked my son to do something, would he expect a reward for performing a task every time? After all he was constantly prompted and asked to perform by every adult that approached him. Would he grow up as a person that would not want to connect with anyone because he had been taught to perform for everyone that approached him? I watched my son giving in and following the script. He behaved like a little robot, repeating his script word for word without even the basic understanding of what it meant. He was learning to do what he was told without question. Would he ever stand up for himself? When language started coming in, it was rote. I posed that questions and someone said that rote language was better than no language. But he was also becoming more rigid, tense and aggressive. I loved Alice and I cherished the somewhat dysfunctional relationship she had developed with my son. They now would play together and she would celebrate every successful request and drill he performed. But when she left we were left with an inflexible child that had no interest in connecting. He was tired and he was done with all that work.

Leo_window2Once our First Steps program days were over, it was recommended we place our son into early childhood education through our district and an ABA clinic. The ABA clinic was a new concept at the time in our area. The dynamic there was very different than the dynamic we were used to at home. The place had many young adults in training to do ABA work because ABA therapists were in such high demand. (Did I mention the cost was astronomical?) They seemed really fun and loving at first but I was no longer allowed to watch the sessions. Our son was taken into a small room filled with toys but no windows and worked with a few different people for 3-4 hours. The director of this clinic, a child psychologist, said that our sessions would be videotaped eventually but that didn’t happen during our time there. When I would pick him up I was given very little information on what went on during that time. I was told the clinic was still trying to get their bearings and protocols in place. It was frustrating but I still believed that was what was needed at that time. I once more didn’t listen to my intuition that was telling me that place was not right for us. Kids there seemed unhappy and so did the adults working with them. One day, at pick up, I noticed my son’s diaper was very heavy.  I worked on changing him right away and noticed that he had a dirty diaper for a while. He had a very painful diaper rash. It was a Friday and he cried a lot during that weekend. I called the clinic on Monday to tell them what had happened and asked who had worked with my son that day. The Director was not on my side and refused to tell me. She said she needed to protect her employee.

I was very upset with the ABA clinic, and also with myself, for not listening to my inner voice. But what happened was a clear sign it was time to get him out of that place. Better late than never. After a year of ABA there was still no eye contact and no interest to connect, the two things I would find later were the most crucial pieces for my child to be able to connect to others around him. But there was a big breakthrough coming! What I was to learn, as that chapter of our lives came to a close, would shatter my view of ABA therapy and Autism forever.

To read part 4 click here!

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