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, entitledCan 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.

11 thoughts on “To Tell the Truth – Asperger Mom”

    Comments

    • J4RV15 on February 15, 2015

      thank you, my son is also 10 and I relate to so much of your post x

    • SteveBorg on March 4, 2015

      As a therapist working with parents and kids on the autism spectrum, I appreciate your input. I, too, have been leaning much more toward telling kids about their diagnosis, over time, with supportive materials.

    • NoGyroApproach on March 30, 2015

      I think this is a very well written and thoughtful blog. I relate to the simple, yet to the point, wording you used about the smart part of the brain needing to teach the the other part with challenges.

    • kissoon on May 1, 2015

      I am really sad that you view this as a disorder , your son is blessed, by you awakening him at such a young age he will certainly move forward and outperform his silly peers.

    • JacquieC on May 7, 2015

      Thanks so much for sharing your experience. Am about to share with my own child. Reading this has given me a new strength and determination, instead of being scared. Cannot thank you enough!

    • Dominique22 on June 9, 2015

      How did you let his peers know?

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    • djgrrrl on December 30, 2015

      Thank you for this. I was on the fence about telling my son but I need to. He is 12.

    • Sjero on January 1, 2016

      I wish I had known earlier. It would have saved me from a lot of self-hated and acceptance of shaming from peers and family.

    • Kms52 on January 7, 2016

      Thank you for this post. We also shared our son’s diagnosis with him. And sometimes discuss it again when his feelings of not liking himself arise. Despite social pressure to be the same, different is not bad and can be very good. My son feels so strongly the emotions of others, which makes him amazing with babies and others who are nonverbal. Yet those who are unkind and inconsiderate to others though with more developed verbal skills are more socially accepted. It really is odd.

    • kalmrain on April 13, 2016

      My son is only 6, but his differences are so obvious that his cousins have asked more than once (who are all around his age, one only three months apart) why he’s so different or does or says weird things for years. At first, I wasn’t sure what to say, but I started with the whole his brain works differently thing. My son is kind of oblivious that he’s different at the moment, so there hasn’t been much discussion with him. Although, I wouldn’t hesitate to tell him, because it doesn’t give him a label, it tells him the ‘whys’. He hasn’t really even reacted to being bullied, albeit, I have. From what my mom and dad have told me, he’s almost exactly like me, except I could talk earlier. I’ve always felt like I don’t belong anywhere, no matter what anyone says, never realizing I just needed to accept myself the way I am, quirks and all. I am hoping that awareness early on for my son will help him to understand this sooner than later so as to not go through as much pain for not ‘being like everyone else’. I’m glad that you told your son and it’s helped him to know that he’s different, and that’s ok. =)

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