To Tell the Truth – Asperger Mom

Joanne Houldsworth is the parent columnist for WrongPlanet.net. She covers autism through the perspective of a mother of a young son with Aspergers Syndrome. She writes a weekly blog, entitled Aspergers: A Mom’s Eye View, where this article was originally posted.

“Greg, the doctor has discovered that your brain does not work the same as most people’s…” That is how the discussion with my 8-year-old started…

There is much debate about the age at which your child is ready to learn of his diagnosis. After all, you want your child to have good self-esteem and a carefree childhood; why worry him already? Since every situation is unique, there is no ‘correct’ answer to this valid concern. But I believe that everyone manages better when they understand what they are dealing with – and that goes for children as well as adults…

If your child is old enough to be aware that “he is not like other kids”, then you are not protecting him from pain by keeping him in the dark about his disability. You are in fact, increasing his sense of isolation and poor self-esteem by negating his feelings and not acknowledging his difficulties.

For years, my son Gregory was dragged back and forth to various types of doctors, undergoing numerous tests and evaluations, in an effort to identify why he was struggling so much socially, emotionally and physically. I tried to be vague and upbeat in response to his questions about why he had to go see another doctor, but I never specifically identified to him where the areas of concern lay. I didn’t want him to label himself, or to feel like he was somehow ‘wrong’ ….surely ignorance is bliss, right?

But as time passed, Gregory began to tell me that some kids didn’t like him or thought that he was ‘weird’. He would tell me that kids didn’t want to sit next to him at school because of his ‘noises’ [tics]. And one day, when he was 8 years old, he announced to me, with a sort of thoughtful self-revelation, “You know Mom, I’m not like other kids.” Pressed for more, he responded, “We just don’t think the same.” But my heart nearly broke when Gregory, beside himself with self-condemnation and frustration, sobbed uncontrollably, “Nobody understands me! I just can’t….can’t….can’t help it!”

In fact, the kids (and perhaps teachers and other adults) had already unofficially ‘labeled’ Greg in their minds, based on his strange behaviors….I don’t blame them for this – his behaviors were definitely odd. But more importantly, Greg had also already labeled himself as strange and different – an outcast – and he blamed himself for it.

So, when we finally confirmed the diagnosis of Asperger’s Syndrome with a pediatric neurologist, I decided to share the news. I first shared the diagnosis, along with some educational material, with our family and a few close friends. I didn’t know yet what AS might fully entail, but I wanted to help them better understand and accept Gregory. I also knew that Barry and I could definitely use the emotional support of our relatives and friends!

After thinking long and hard about it, I also shared the news with Gregory. Although he was still so young, based on the feelings of inadequacy and isolation that he had already expressed, I believed he would find the information comforting, rather than disturbing. I hoped he would be able to redefine himself from being ‘weird’ to being someone with AS. So, I took him aside and calmly discussed his diagnosis in terms that I hoped he would understand and find reassuring:

“Gregory, you know how we’ve been taking you to lots of different doctors lately? Well, Dr. SyTe has discovered that your brain does not work the same as most people’s.” Greg looked shocked, but since I was calmly smiling, he was open to hearing more. “That is good news and bad news,” I said. “The good news is that one part of your brain is really, really smart. The bad news is that the other part of your brain has some trouble, which is why you have difficulty managing your emotions and making friends sometimes.” Gregory nodded his head, acknowledging these troubles. “So,” I continued, “we need to work really hard to get the ‘smart’ part of your brain to ‘teach’ the other part of your brain the things it needs to learn.” Then I asked him if was willing to work hard to help his brain and he enthusiastically answered, “Yes!” with a great big smile! Phew!!! I then presented him with a cute little book for kids, entitled “Can I tell you about Asperger Syndrome?” so he could learn more about the disorder.

To be perfectly clear here, most people do NOT have this discussion with their young kids. I later learned that we are in a small minority of parents who inform their elementary-school-age child of his disability. But I am convinced that it was the right thing to do for us. Gregory handled the news very well, and I believe, was greatly relieved to find a logical explanation for what he was going through. It validated his feelings and provided him exclusive membership in a special group of people. And then, as I provided him with more information about the disorder and talked to him about some famous people who also have AS, he began to take it on, as almost a badge of honor. Greg began to understand his strengths and challenges, and why they existed, and was therefore willing to accept that he needed to work to change his behaviors. We no longer heard the distraught, “I can’t….can’t….can’t help it!”

Coupled with our family’s growing understanding and acceptance of his issues, Greg’s knowledge of his condition allowed him to take control over himself, and gave him some ownership of his progress. We would talk about his challenges (and strengths!) as a family, so that his siblings understood the issues and what we were trying to accomplish together. And when we worked on social skills, and other topics at home, ALL the kids got into the act, and I feel that each of us benefited. Greg is no longer stigmatized, but accepted, understood and valued, so that at least under his own roof, he has a safe place to be ‘just himself’.

Over the last two years, we have continued in this pattern of openness with Greg, his siblings, his peers and teachers, and as a happy result, his support circle of acceptance has expanded exponentially. That acceptance, along with numerous programs, has enabled Gregory to grow into himself. He is now relaxed and happy – most of the time! He is a beautiful, bright, talented, funny 10-year-old boy. And oh yeah, he also happens to have Aspergers Syndrome.