Asperger's Syndrome: What's It Really Like?

I was first diagnosed with Asperger’s about 12 years ago. At the time, I was at university and knew very little about it, apart from what had been studied in my psych class. After all, it wasn't a well-known syndrome and the internet was just a baby at the time - it’s not like I could just look it up in Wikipedia.

The second time I was diagnosed was about 6 years ago, and I scoured the internet immediately. Not a lot of info still, but enough. I wasn’t happy with the diagnosis, but, eh, what can you do? With something like this, there’s not much you can do anyway, as it’s more or less a personality thing.

I could give you a scientific rundown, but I’m not going to. I’m just going to tell you how this manifested with me, because my case went unnoticed until I was 19 years old. Hindsight being 20/20 I am now able to look back and see all the signs that weren’t seen at the time.

This is more for parents who are wondering if their kid has it, or for parents wondering if their kids “suffer” by having it. I certainly don’t feel like I’ve suffered and it didn’t get in the way of any of my dreams. Indeed, I suspect the reason I have my career as a professional singer is due to my extreme ability to focus. And my intensity for the things I choose to focus on.

One of the reasons I believe the speculation that Albert Einstein had Asperger’s is because he once said (and I paraphrase) that he was no more intelligent than his peers, but that he had intense focus. He could go and go and go without giving up. This is certainly the way I view myself. I’m intelligent enough, but my ability to succeed comes from a relentless driving of myself, even through sheer exhaustion or illness. It's like a physical need that can’t be turned off. And yet, it’s not an obsession. It’s difficult to explain, sorry. Certainly, being focused does not mean someone has Asperger’s, but, in my opinion, that is the mark of a person who truly has Asperger’s. If you aren’t physically driven toward something, you may have something else.

One note before I continue: It’s said that people with Asperger’s can’t read emotions in others. This is not always the case. I certainly can, but I do have tremendous difficulty reciprocating with facial expressions or physical gestures.

Keep in mind – this is just my experience; others may vary.

• So what is it?

We’ve all heard of Autism, right? And we know there are very high functioning Autistics. Well, Asperger’s is like one rung higher up the ladder. And it doesn’t always present the same way in each person diagnosed with it.

• How is it different from regular Autism?

The most obvious difference is that children with Asperger’s don’t have any cognitive delays.

• So these kids blend in with kids who don’t have Asperger’s?

Well, the mild cases do, yes. If you know what you’re looking for, however, kids with Asperger’s have different body languages and don’t show the same facial expressions. This last part they are unaware of and may think they are perfectly mimicking their peers. I thought this myself until I was in my 20’s and saw it in the mirror.

• Do they need routine?

Even the mild cases, like mine, need routine to some degree. And by routine, this could also be an object that one gets attached to. For example, I had a desk on the left side of the room when I was in 3rd grade. One day we rearranged desks and my new seat was on the right side of the room. I couldn’t function, I couldn’t pay attention, I fidgeted uncomfortably, had to keep getting up and walking around the room. I was almost in a panic. When the teacher asked what was wrong, I said I wanted my desk back. She was so annoyed with me by then, she let me move back. If she hadn’t, I’d probably have had a Rain Man fit!

At some point I overcame that type of behavior and no longer have to suppress Rain Man fits, because I learned how to deal - but only because society doesn’t allow for it, and I needed to be part of society to some degree if I was going to do the things I wanted to do. It probably would have been easier if someone had known I’d had Asperger’s back then, and made some effort to teach me how to deal with the change.

• Do these kids know they are different?

I certainly didn’t. All I knew was that other kids thought I had strange interests and they thought I was way too intense on some levels. So, in short, no – they don’t know, but they probably know everyone else thinks they might be. But they are intelligent enough to know they function, and therefore consider themselves to be just fine.

• So why don’t teachers help these kids adjust?

For all intents and purposes, there doesn't appear to be anything in need of serious help. I was always in the top 5, academically speaking, and was able to read, write and speak at a college level in 2nd grade. That’s the opposite of a warning sign for most teachers. If other kids don’t like you, they just figure that means you’re a brat in some way.

• Is it true Asperger’s kids are clumsy?

I wasn’t. I excelled at softball (I was great at pitching, thankfully, as the idea of playing a base was stressful -- too much to keep track of and not so easy to focus on one thing) and show riding. But it’s interesting to note, I only excelled where teamwork wasn’t required. I was actually quite bad at sports like basketball and soccer – not because I was clumsy, but I really couldn’t get the concept of having to work with and rely on other team members. I couldn’t “see” what I was supposed to do. That may sound like stupidity but I mean it very literally. If I had a focal point, I could do anything. If I had to play a part, I couldn’t perform.

• They say these kids lack empathy, right?

I don’t think this is always correct and it was never the case with me. I do, however, suck royally at expressing empathy. This may be the case with others as well, so don’t take this to mean they aren’t crying for you on the inside, they just might be. Let me try and clarify what I mean. You tell me something awful, and I feel for you. I feel really intensely, as a matter of fact. I want to hug you and make you feel better. But.. I can’t. It’s not inhibition, it’s not psychological damage. I just can’t. In your eyes, it will appear as though I’ve listened to what you’ve said, and didn’t care at all – not even a little bit. You’ll think I’m cold and uncaring, but it’s only because you can’t see or feel my reaction as I feel it inside.

• Oh, that’s just an excuse! You could do it if you really wanted to!

I’m not an idiot and I have no desire to be socially inept or hurt other people’s feelings. Believe me when I tell you this one little inability sufficiently screws up 99% of all relationships someone with Asperger’s will have. If it were as simple as ‘just doing it’, it would be done.

• Is it true you can’t read other people’s body language?

This is often the excuse given for those with Asperger’s who just keep dominating a conversation, even when the other person clearly isn’t interested and wants to walk away. Let me just say, I recognize body language and always have. I can read it very well – but there are times when I just don’t react to it and keep going. It’s a matter of being on focused on what you feel the need to express at that time.

So, while many with Asperger’s can't recognize this – some of us certainly can.

• I’ve read there’s a correlation between over-vaccination and Autistic disorders.

I’ve read this as well. I’ve no idea what the answer is, but I can tell you I was definitely over-vaccinated as a child in the late 70’s. My parents both work in medicine and I was vaccinated twice for some things, and thrice for others. Today we know this kind of thing creates problems, but back then.. well, back then we thought smoking during pregnancy was ok, too. I’m not saying the correlation exists, but I’m certainly an example of someone who was over-vaccinated and has it.

• Give me an example of this focus in kids.

Kids with Asperger’s often manifest focus via some obsession. Such as collecting things which don’t really mean much to them. For example, I was obsessed with books when I was a kid. I had to have them everywhere. In my bed, next to my bed. I used to sit on my floor and pile them up all around me.. and just sit and stare at them. While they were closed. For, oh.. I dunno.. 3 or 4 straight hours?

Now, I know what you’re thinking.. I write books professionally as an adult, so this was just a sign of an early love for books. No, it wasn’t. I did not like books as a child and I hated reading. It bored me to no end. In fact, the books I piled around me, I had never even read and had no interest in doing so. I just wanted to have them. To a lesser degree, I still have this.. um.. issue. I buy loads of books and love to look at them in a row on my shelves.. but have no desire to read them.

My main focus, however, switched to blues music when I was 8 years old and it continued until I became a successful blues singer. There was nothing else I thought about, nothing else I listened to in my spare time, from 8 years old until my first gig. And it did not slow down. In fact, I didn’t realize my obsession was unusually intense until famous musicians I knew remarked on how remarkable my focus was – and they couldn’t believe it started when I was that young.

• Sounds like OCD to me…

In a way, it does – but it’s not. Unfortunately, many with Asperger's are misdiagnosed with OCD.

• What about hypersensitivity?

Loud noises, especially doors slamming and dogs barking, can really make me want to scream with pain. It’s such an awful feeling I can’t verbalize it for someone who hasn’t experienced it. It’s like nails on a chalkboard to the nth power. Same with bright lights and fluorescent lighting. I’m also highly sensitive to clothing – I really can only wear jersey material or some variation in shirts, or I go mad at the feeling on my skin. Many with Asperger’s experience this, but not all.

• Do these kids grow up to make anything of themselves?

Well, if Einstein really had it, I’d say they can turn out ok. Me, personally, I’m a professional singer, published novelist and sex columnist. That said, my personal relationships usually suck, but I prefer to blame that on the men I’ve dated. (Grin) Because Asperger’s is so “new” it’s hard to know how many famous people had it – but the growing list of those who do have it includes Nobel laureates and Pulitzer prize winners, so these people can certainly achieve like anyone else can.

• Einstein? Really?

Well, who knows. Some speculate he had it, others say no, cos he had a good sense of humor, which people with Asperger’s don’t often have. Alls I can say is I have a pretty good sense of humor and I have it. Why couldn’t Einstein?

• Who else is thought to have had it?

Again, all just speculation here, and not everyone agrees:

Lewis Carroll

Mozart

Thomas Jefferson

Sir Isaac Newton

Andy Warhol

W. B. Yeates

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At any rate, Aspergers is not something I’m unhappy about having. In fact, it doesn’t bother me in the slightest. The important thing is you raise your child to view it as a difference and not a defect. It’s just a different way of seeing and thinking, really, and there’s nothing wrong with that.

xx Isabella