Was I misdiagnosed?

All my life I thought I was ADHD; now maybe I have Asperger's syndrome

Published June 8, 2012 12:00AM (EDT)

                                                                                                                                                                                                                                                                                                                                                                                                                       (Zach Trenholm/Salon)
(Zach Trenholm/Salon)

Dear Cary,

I was hoping you could help me sort through something. I'm sure others have had this same problem, but I've never found them, and I have no idea whom to turn to for this sort of thing.

When I was 6 or so, my parents took the advice of one of my teachers and had me evaluated for a learning disorder. After a battery of tests and differential diagnosis, the doctors finally decided that I had ADD (now called ADHD-inattentive type). For years I struggled with the effects of this disorder, which for various reasons could not be remedied with medication. It hasn't been until recently, when I completed my BA with the highest GPA I've had since elementary school, that I decided I was OK with who I was and how my mind operated. But now I'm wondering if the disorder I've embraced as a piece of myself is the wrong one.

ADHD was the disease-du-jour when I was a child, much in the way autism spectrum disorders are now. My mother, who has been working with special-needs children in one way or another for almost a decade, has told me that she's noticed similarities between me and the ASD children she's taught. If it were just a comparison between those children and the way I am now, that'd be one thing, but she's noticed things that actually correspond with my own development when I was growing up; her 3-year-old ASD student has some of the same traits I did when I was 3, her 6-year-old ASD student shows the same quirks I did when I was 6, and so on. She recently confided in me that she thinks there may have been a mistake, and that there's a possibility that I have Asperger's syndrome instead. It's something that I've suspected for some time as well, but I always dismissed it because I know how ridiculous self-diagnosis is. Now that someone else has pointed it out, however, I wonder.

I suppose the question I pose to you is, what exactly should I do about this? I've never had myself reevaluated to see if I have adult ADHD -- it's always something I've just assumed -- but I've been toying with the idea on the chance it could help to have it be official. Now that Mom's brought up the possibility that I could be on the autism spectrum instead, it could behoove me to explore that possibility thoroughly, as much as the idea scares me.

On the other hand, I have to wonder how much good it would do. I'm not a child anymore -- in fact, I'm almost 23, and well beyond the cutoff for early intervention or IEPs [individualized education programs]. Even if it's right, it won't go back and fix the hell I went through in high school.

There's also the irrational feeling that I'll be letting go of a piece of myself, as if letting go of my ADHD will be hacking away at the identity I've built for myself. I can't even begin to figure out how to handle that. I'm also at a financial disadvantage; I'm unemployed, and while I'm still protected under my parents' health insurance, I'm not sure how much it covers mental health, or how to find out that sort of information. (And on a less important note, I also know I'll have to suffer at least a little of my father's teasing: "Would you like some cheese with your Ass-burgers?")

Do the benefits of a proper diagnosis outweigh the negatives? How would I deal with letting go of a "fact" about myself if my suspicions prove to be true? And am I crazy for wanting to cling to a disorder just because I think I've had it my whole life?

Diagnosing My Diagnosis

Dear Diagnosing,

To answer your first question, it seems reasonable to ask how a proper diagnosis could help you. What would the benefits be?

Perhaps you could start there, by listing those benefits as you understand them -- both the tangible and intangible benefits. Then also list the negatives.

At least that would give you a picture of the situation.

For instance, if you have certain symptoms that treatments for Asperger's syndrome are known to alleviate, that sounds like a benefit.

What would be the negatives? Well, one negative might be that you would have to explain to people your new diagnosis and you would feel uncomfortable. There might also be unpleasant side effects of the treatment. Or the treatment might feel all wrong. This would really require some specialized knowledge. I'm suggesting a framework.

That is how I would proceed -- with specifics, weighing each one carefully, going slowly, knowing that you don't have to do anything, that it is in your hands, that it is your choice.

How do we take in new information about ourselves, and how do we resist it? How do we cling to what we have believed about ourselves? Is a diagnosis an identity? To what degree is the true self fluid? To what extent do we distort the true self by giving it static properties?

These questions rattle about in my head. Perhaps they will rattle about in yours.

I don't think it's crazy to cling to a diagnosis. A diagnosis helps us make sense of stuff. For instance, if there are times when you are not able to do what others do, or you do not respond to events as others do, you may say to yourself, Well, that's my ADHD. A diagnosis can be a comfort.

But it's important to remember that you are unique. You are not a collection of symptoms. You have a personality and an inner life. You have likes and dislikes. You are capable of many things. Your diagnoses are only a part of who you are.

To put it another way: What is your soul doing? What is your soul asking for? Are there longings and voices that you have inhibited or held at bay? Are there troubling or frightening sides of yourself that you would like to explore? What we are really asking is, What is it like to be you?

By the way, I'm no expert but when I read a brief description of Inattentive-Type ADHD, my immediate thought was, This is an introvert with ADHD, that's all! But I'm sure that's a great oversimplification.

My bottom line is that the self is not just a problem, but an expression of something greater. Our problems are not just problems: They hint at something greater. There may be lots of reasons why you did not fit in with the other kids. Something in your soul may have been saying, no. Did you ever think of that? Something in your soul may have been saying, None of this makes any sense at all. Great artists and thinkers might say the same thing.

Something in your soul may be saying no right now. It may be saying no to all diagnoses. It may be saying no to the whole prospect of having other people define you.

That is a larger question. But you are almost 23 and this is your life. So you might think about that. Perhaps you are exactly who you are supposed to be already.

By Cary Tennis

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