Chapter Forty-Nine: Telling Your Child They Have Asperger’s

Q:		I’d like some advice. I have a child/teen with Asperger’s Syndrome. Do you think I should tell them about it?
A:		Yes, absolutely.

As an adult who was diagnosed late, I often lament how much easier my life could have been had I only known about my Asperger’s Syndrome earlier and had time to get a good grasp on myself and my needs.

I think back to my first job and how I would probably have been allowed part-time work had I been able to justify my reasons for wanting it or the various other workplace changes that I could have asked for if anyone had ever pinpointed to me exactly where my difficulties lay. At the time, I found it so hard to put my finger on where this frustration was coming from. I sought answers but took years to figure it out by myself. I needed someone to spell it out.

“The cubicle environment is too bright and noisy. Having people wandering around and interacting with me when I’m trying to focus irritates and exhausts me. Networking and communication tasks aren’t a good fit for me.” And so on. And to think, all along, there was published material out there that could have helped!

I also think about how much of my life I’ve spent forcing myself to do things that were really not okay for me because they were the standard expectations of other people, going to functions or celebrations and trying to mingle for the duration because I was expected to be there (and it would be impolite to leave), doing workplace tasks such as calling around to chase up work, and networking with suppliers to “keep on top of new innovations.”

These jobs, to most people, aren’t a big deal, but for me, they require so much willpower to get into the high-energy concentrate-and-say-the-right-thing mode required. And having to do them in the daily work environment evoked a certain dread. But I was so afraid back then that people would think I was lazy or apathetic if I avoided work, so I kept beating myself up and pushing through it.

Imagine how that would have changed if I’d known about my Asperger’s then. Instead of questioning and criticizing myself, I could have been looking for solutions and explaining my needs to others. Maybe the people around me would have been okay with me avoiding some of the people-oriented jobs. Maybe I could have felt justified in changing tasks around a little or even saying no some of the time!

It could have made all the difference between me being okay and not okay. Perhaps my career could have turned out differently. I can be incredibly industrious when functioning at optimum levels. But instead, I was forever running on low, battling exhaustion, frustration, and a general urge to get out of there. What a waste of my talents.

Knowing there’s a real reason for my difficulties makes a lot of difference.

And going even deeper again, imagine going through life repeatedly at odds with people and never understanding where others’ negative reactions are coming from. Imagine all the horrible assumptions you might make about yourself in response to that.

I think most people with Asperger’s will experience other people reacting badly to something they did or said at least every now and then. And if you know that you have Asperger’s, you can dismiss it as Aspie behavior and misunderstanding. But when you spend a large part of your life having these experiences and never knowing why, it’s only natural to start to wonder what’s wrong with you. You begin to look for patterns and make assumptions such as, “There’s something wrong/bad/boring/negative underneath, and when people get to know me, they’ll see it and walk away.”

I remember a point in my life where I came up with a theory based on how frequently my friendships petered out. “It must be because after a while, people get sick of me and don’t want to spend time with me anymore. After all, I do tend to go on about things. I must just be an unlikeable person.” That was what my inner voice was telling me.

Just recently, a friend in my Aspie group, David N., was telling a story about a recurring dream that he has. It was something along the lines of being at a campfire or social gathering where people are laughing and socializing in a group, and he stands there in the background, a demented, grotesque figure hiding in the bushes. He wants to join in, but he’s afraid that if he comes out into the light, the others will see what a hideous creature he is, so he holds back.

This is a picture analogy for how he feels in life. He has explained before how he had formed an inner belief that there must be something wrong, bad, or ugly within, and when people get to know him, they start to see it and turn away.

This man is the most humble, considerate, kind, and nurturing person I’ve ever met. There is nothing ugly about him inside or out. He shows wisdom, intelligence, and a great deal of understanding toward those around him. He goes out of his way to be supportive and encouraging. I couldn’t think of anything further from the truth than his ugly vision of himself. But fifty-plus years of negative vibes from other people have cemented this idea in his head, and once such ideas are in your head, they’re hard to get out.

Sometimes I think of myself as part of a lost generation (or generations), the ones who had to go through life with Asperger’s unknowingly. And I’m hoping that in the future, with better education and understanding, the Aspie youth of the future will have a completely different experience.

I’ve read quite a few postings online from people who were diagnosed late, expressing how indignant and irritated they are that all the time, this was what they had and they never knew it. They felt irritated that the world never cut them a break and about all the instances in their life where, had others been understanding, things could have been so much easier. They’re perturbed by all the internal anxiety they’d put themselves through unnecessarily.

It’s a nice feeling—a relief—to finally find an explanation for all the confusion and difficulties in your life, but it would have been even nicer to have known it all along.

In a schooling situation, I think revealing one’s Asperger’s becomes more complex. Do you tell the teachers about it? Probably, provided they are good teachers. Is it beneficial to tell the other students? I’m not sure. I haven’t experienced being labeled with Asperger’s in a high school situation, so I don’t know if having the label and standing out would be more problematic than the symptoms themselves. Teenagers can be very cruel in taunting those who are different. If the teachers led by positive example and encouraged the right sort of attitude, I think it could work out well. But attitudes vary.

I don’t have the answers, but I do think that regardless of what you decide about the teachers and other students, it’s important to let the child know about their own Asperger’s. It enables them to understand themselves better and form the right sort of self-beliefs and attitude.

So my opinion is, do tell your children they have Asperger’s. Tell them in age-appropriate, positive ways. Let them know they have a special mind and that it comes with blessings as well. Because I think nobody should have to go through life with this syndrome not knowing what it is.