Settling into The Boy’s diagnosis of Asperger’s Syndrome has been like breaking in a new pair of shoes. Stiff and unfamiliar, at times rubbing uncomfortably, leaving a painful blister here and there. Now obviously, The Boy has not changed since the diagnosis. No, his personality, his struggles, his strengths, his weakness, his idiosyncrasies they remain the same. And yet something about the whole experience has brought something to the forefront. Something that always hung around in the periphery of my thoughts. Lurking in the shadows, just out of sight. But it wasn’t really hiding. In all likelihood, I did not want it to step out into the harsh daylight, forcing me to address it. This thing that I am now confronted with is my extreme concern over how others see The Boy.
I have spent the better part of the past nine years being The Boy’s buffer to the outside world. For every odd behavior, I had an explanation. For every social shortcoming, I was ever present - swooping in and smoothing over. For most any situation, I over-planned, over-analyzed, and micro-managed. I came prepared. I avoided. And for many years, my efforts paid off, as only those closest to us had any indication that The Boy was anything but “normal”. It was all-consuming, this attempt at keeping up appearances, and soon it so infiltrated my way of thinking that it simply became matter-of-course. But as The Boy got older, his peculiarities became more conspicuous. Behavior that may have been tolerated in a very young child were seen as odd, annoying, or rude in an older child. The Boy stepped more frequently into situations in which I was not present in to help him navigate. I felt my control slipping away.
The more the control slipped, the more the concern about the thoughts and opinions of others took hold. The looks of exasperation or annoyance, while usually lost on The Boy, were like knives to my heart. And so for a brief moment, this diagnosis brought with it some degree of relief. Now I could show people why The Boy does the things he does and acts the way he acts! The next time I saw that all too familiar look of annoyance on someone’s face, I would be ready. “He has Asperger’s,” I could declare…and the look would be replaced with one of understanding. Obviously, the comfort of these thoughts was fleeting. Of course I could not go around announcing to everyone that The Boy had AS. How insensitive and tactless that would be.
I think one of the trickiest things about Asperger’s Syndrome is that those living their lives on this little section of the autistic spectrum appear to most people to be “normal”. But their idiosyncrasies or way of relating to the world may get them labeled as weird, strange, or annoying. If The Boy’s differences were somehow physical, they would elicit responses of understanding and curiosity…but because his unique way of thinking and interacting with the world is not obvious, the reactions are often quite negative. And that is painful to watch. At times I still resist the urge to blurt out, “He has Asperger’s!” in an attempt to shift the attitude to one more of acceptance than judgment. But I can’t. So now I am confronted with the knowledge that The Boy is going to be seen as “different” or “odd”…at times, even “annoying”…and there is nothing I can say or do to change that. What I can do is adjust my own way of thinking. I need to take hold of the fact that the opinions of others do not define The Boy. It is these very differences that make him who he is. And I love who he is. I need to use that fact to insulate my heart against the pain of having my child be anything less than cherished and accepted in the eyes of others. It is not an easy task, but it is so necessary. How am I to teach The Boy to cope if I cannot cope myself?
10 responses so far ↓
1 // May 14, 2007 at 9:27 am
Hmmm…..
Wouldn’t you be doing a disservice to all by keeping his Dx quiet? I think you might be surprised about how few do really know what Asperger’s is; by educating people about it you’d be serving the whole community of those who have Asperger’s.
Here in the South there have been calls for schools to actually weed out those who are mainstreamed and put them in separate schools. (!!??!!) I suppose those kids are too “annoying” to the little normals and should go to ’separate but equal schools’. ARRGGGHH!
You’d be wiser and kinder to have people adjust to the Boy because there’s too many jerks out there looking to make it more difficult and worse for those like the Boy and those with other invisible conditions to make it in our society.
Turning back the clock is just plain wrong, so please consider moving yourself and your Boy forward into a less ignorant future. Do this by educating the vast majority of the unwashed ignorant about Asperger’s.
Please.
2 // May 14, 2007 at 9:54 am
Your writing is so touching and so pure. I feel honored to know your thoughts. Thank you.
3 // May 14, 2007 at 1:35 pm
I can relate in only a small way to this because my daughter does not have AS. However, she is different from alot of kids. I haven’t had her “diagnosed” or put under a microscope long enough for them to label her. I think in some ways this is always good to know what your dealing with, but in my case, I just feel like it would be another hinderance put on her. Plus I’m hoping she grows out of most of it. But I think she is ADHD without the hyperness. She has trouble focusing and paying attention. She gets hung up on many small things and I hate that I have to explain it to anyone. I too feel alot of times I have to guard her, keep her from being judged. It’s hard to always be the protective one. At some point I think I need to just let her go in a sense. I need to let her be and learn to deal with judgements and harsh words that may come her way. After all, when she’s in the real world without her MOM to protect her, she’ll have to know how to do it too. I don’t know all the details to AS, but you probably know more than most about your son. You and the boy can both go through this together and learn about it together and let go together. It’s a process. You recognize your shortcomings and his, but it isn’t all in vain. I think we learn from those shortcomings in our lives. I hope you will find your way through it too
4 // May 14, 2007 at 6:36 pm
I kinda know how you feel… I was diagnosed with Aspergers (later changed to ADHD) when I was in my early twenties, and my immediate reaction was, “Finally people will stop staring at me like I’m crazy! They’ll know there’s a reason for it! I’ll be able to fit in!” For a while I even wore an orange wristband that was meant to signal to people that I was an “aspie”, and I made an informational sheet to give out to people, with my name, photo, diagnosis, symptoms, doctors’ info, emergency info, etc, to hand to people when needed. (It actually helped me out of a jam a few times when I handed it to police officers or medical personell who were certain I was on drugs!) But as for telling everyone I came in contact with… it didn’t work! as well as I thought! People either thought I was weird for disclosing something so “personal”, or they thought I was using it as an excuse. I dunno… I guess you just can’t win!
Another thing weirdabout having Aspergers is that you DO appear “normal” and can act “normal” in certain situations. For instance, I work with kids with special needs, and people rarely know that I actually AM someone with special needs! It often feels like I’m invisible or know something everyone else doesn’t! And then, sometimes, when I slip up and do something “odd,” I think, “aw hell, the jugs up!”
Oops, why ARE my comments so long????
5 // May 14, 2007 at 8:29 pm
I think it is a wise decision on your part not to immediately announce Matthew’s diagnosis to everyone you meet. As much as you don’t want him to be looked down upon, you also don’t want him to be pitied. Matthew is a special sort of person who may be irritating to some, but has such enthusiasm and vibrance that there will certainly be plenty of people who not only accept him dispite his condition, but love him because of it. As long as Matthew knows that other people’s sour faces do not actually make him a lesser person, and as long as he knows he can talk to you and get help interpreting the world around him, he will be fine. As much as it would comfort you, there is no way that you can shelter him from everything for the rest of his life, and the most healthy thing you can do is let him have experiences now while you are available to help him understand them so that when you are not immediately available, they won’t be as new and scary. He will have some experience with the world that doesn’t understand him, and it won’t hurt as much when he is reminded that it doesn’t.
I also fully agree RosieS that it’s a good idea to educate those around you about AS, but maybe not as an exuse for your son’s personality. His individuality may require some explanation, but never an excuse.
Best of luck to you with everything, and thank you so much for sharing your thoughts with us.
6 // May 15, 2007 at 11:25 am
I don’t know you or Matt. But the world is a judgemental and cruel place at times. Maybe, by not protecting him (and yourself) all the time from the judgement of others you’re helping yourselves learn to cope with what comes in the future?
7 // May 15, 2007 at 5:00 pm
There are some good resources/programs for kids with social/cognitive issues out there. Both for the AS kids and the ‘neuro-typicals.’ I don’t know if you’ve had any experience with them.
Two writers/presenters that I like a lot are Marcia Garcia-Winner (I think she’s in CA) and Jed Baker (in NJ).
Your writing about AS and it’s complexities, as usual, is so true and straight from the heart, echoing the experiences of so many that I know. The kids I know with AS, as they get older, perceive these differences themselves and it often helps them immensely to understand the origins, etc. as being neuro/bio vs. personality (they aren’t ‘weird,’ their brains work a little differently)–as well as to know that they can learn to think in a more social-savvy way, when/if it becomes important to them.
I know that this is so much unsolicited info that you may not even want. Please just disregard if I’m overstepping, Mel. I am wishing you and the boy the best.
8 // May 16, 2007 at 6:45 pm
The Boy has limited control of what he is doing. I feel like I have something wrong with me. I’ve got weird habits and a few unidentified learning disabilities.
Learning to deal with them is difficult, es specially if you can’t i.d. the root. Think about what he’s doing, try to figure out a way to change or ‘correct’, in a positive way, it.
Best of luck. It will be trying, but if it wasn’t we won’t be able to grow and become better people.
amy
9 // May 18, 2007 at 6:02 am
This post brought tearsto my eyes. There are days when I want to get my son a shirt with “I have Aspergers” printed on it just so that everyone will know and be more gentle with him. I struggle with how much to tell people and when to tell people and if I even need to tell people at all.
This post so perfectly put into words everthing that I battle with on this issue.
10 // May 18, 2007 at 10:36 am
This is very interesting. We got The Biscuit’s diagnosis when he was 3 days old, so have known that he has Down syndrome longer than we’ve known his personality and idiosyncrasies. I have taken the path where I plainly state that he has Ds (he has “soft” features and people can’t always see that he has it). It was my way of learning to say it without crying and freaking out I think. Also I wanted him to just accept it and not get hung up on “why did this happen to me” — it just is who he is.
I wonder now if I would have had the same instinct as you if he had been older when we found out.
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