a parliament of owls

life with asperger's

Tag: identity

Advice: A Teen Asks Why Asperger’s Isn’t an Excuse

This teen’s question on a public Asperger’s forum touches on one of my anxieties about upcoming generations who have had the benefit of early diagnosis. Those of us who grew up without one had the difficulty of learning to compensate because we had challenges that were not made sense of by a diagnosis and usually received no support for these issues. In some ways, this made us strong. We pushed through, when we did, and made it work. So, too, do many younger Aspies who have been diagnosed and received supports. But then there are others who take the diagnosis as an excuse not to force themselves to do difficult or uncomfortable things or to practice self-control. As parents, teachers, mentors, and friends, we must ask that Aspies who receive early diagnosis continue to push themselves so that they can, as much as possible, become independent and contributing adults. Temple Grandin often talks practically and compassionately to Aspies and their parents about the importance of this.


“My parents tell me not to use Asperger’s an excuse to misbehave. I don’t understand that. I am not a neurotypical. I feel that my Asperger’s defines who I am. How come it’s not an excuse for misbehavior at home?” [In a follow-up discussion to a different reply, the writer added that the misbehavior at home was refusing to do last-minute chores and being disrespectful to his parents in the way he declined.]

My Reply:

I agree with your parents to some extent. I am autistic and so is my son. If you are high-functioning, then you can be expected to take care of your hygiene, eat properly, pick up around the house (to contribute your share of the work in living there), perform in school, and, as you age, support yourself with a job. The world, even your parents, do not owe you a free pass / a living. You can learn to compensate for aspects of your diagnosis that make some of these things more challenging.

In turn, your parents should help you learn to compensate, such as by explaining ways of managing a schedule or doing tasks without getting sensory triggered (I provide my son with kitchen gloves for tasks like taking out the garbage and allow him to put away clean dishes since he hates touching dirty ones — I do that part instead). They should learn the importance of providing you with advance notice of having to do things (like do a chore or go on an outing to the store or a relative’s). If they forget, do as they ask but also request (politely) advance notice in the future to help manage your stress. Keep in mind that when you enter work life you will get last minute requests, too — you need to train yourself to tolerate this as much as possible. I know it is stressful — I have the same issue.

I’m not sure in what other ways your parents might think you are misbehaving. If it’s something like focusing on your interests (what some people call “indulging”), I would say that is self-care and not misbehavior. You need to do this to stay well emotionally. In that case, stand up for it. Your parents may become more accepting of this if your other behaviors fall into line with what should be expected of all capable adults or forming adults. If it’s for being irritable or rude, then apologize (even if, yes, this is attributable to your diagnosis), and try to do better. It’s not fun to live with someone who hurts your feelings, even if there’s an explanation for it.

TLDR: A high-functioning autism diagnosis does not excuse any of us from being responsible for ourselves or contributing to the world, even if some of that is more difficult for us.

[Question edited for consistency of spelling and concision.]

So You Say You’re Autistic

So you say you’re autistic, or have Asperger’s, or whatever. Well… You don’t look autistic. You look just like anyone else. You make eye contact. Plus, you seem to be able to hold up your end of a conversation. There doesn’t seem to be anything wrong with you, as far as I can tell. I mean, true autistics can’t talk. They hit themselves. If that’s autistic, you aren’t autistic.

Okay, okay, maybe you’re autistic in some way, but how autistic can you be, really? And what do you want me to do with that?

I mean, let’s say I accept that you’re autistic. Does that mean you expect special treatment? Like what? Am I supposed to ignore every time you’re rude to me or embarrass me in public? What about when you’re late all the time? You knew when we were supposed to be there at Y:00, but it’s like you just don’t care. You get involved in doing something on the computer and next thing I know you’ve lost all track of what you’re supposed to be doing. You’re an adult for Christ’s sake. You can get places on time.

And it’s like, you have no awareness of when you’ve driven a topic into the ground. You go on and on about X in the most excruciating detail. I mean, you don’t even realize I stopped listening 20 minutes ago. Or that other thing you do. You switch topics right in the middle of a conversation. No warning, no context, nothing. And then even if I am listening, I have no idea what you are talking about.

Yes, a car alarm just went off outside. Calm down. It’s not like the house is on fire. Stop that. Stop covering your ears. You look ridiculous. It’s just a car alarm. I don’t like that sound either, but you don’t see me covering my ears.

Back to what I was saying. Look, you have to get used to going out and talking to people. Real people, not people online. Yes, I know that takes a lot of energy for you. Not everyone’s social, but it’s important to be social, you know? You need to learn how to interact with other people and get along with them. Sure, they ignore you sometimes or act like you’re weird. I mean, you’re a little different, okay? I’m not going to lie, but so what? Everyone’s different.

Don’t try changing the topic. No, I don’t smell anything. I already took the garbage out; I told you I did. No, I did not wash out the can. I’m not going to wash it every time I take it out — nobody does that. That’s why it has a lid. Then turn the fan on. Point it away from your face if you don’t like the air hitting your face.

For crying out loud, have you ever tried living with yourself?

On Identifying as Autistic

Not long ago, I was talking about being autistic with a woman who became angry that I was identifying with a medical label. She (a non-autistic) found this dehumanizing. I explained to her that some self-identifications, such as this one, can provide a helpful way of organizing a particular understanding of oneself and others. I argued that we (all of us) should be allowed to choose our self-identifications based on which ones seem most useful (and to provide a contrast I explained that I do not much identify with being a woman or a mother because I don’t find those identifications helpful or interesting, which further unsettled her).

Today, when watching fellow autistic John Elder Robison’s Switched On book talk with his Beth Israel Deaconess neurologist (via C-SPAN), I learned that some high IQ, high functioning autistics’ brains have measurably more plasticity than average. Dr. Alvaro Pascual-Leone said that this enables them to master new domains of knowledge so quickly and well that it is akin to a “savant” ability. I had to pause the program. For many years, I have tried to explain this quality of my mind, but did not have a conceptual basis or a language for it. I immediately recognized myself in what Robison and his doctor described. I am able to immerse myself in new fields of knowledge so rapidly and thoroughly that switching industries and editing in disparate disciplines has been relatively easy for me (with the only restrictions being mathematical and spatial reasoning, where my abilities are just average). Robison said that throughout his life, this made him feel like a fraud–that he was faking his moves into new industries (classic imposter syndrome). Actually, Dr. Pascual-Leone said, Robison’s ability to understand and master new domains on his own is evidence of his gift.

And this is why being able to identify as autistic is so important for those of us who do. Because we don’t come with an owner’s manual and because most other people we encounter do not operate in the same way, we need to have a way to achieve better self-understanding. This will, in part, be through a medical construct–because there is a biological basis for our developmental differences–but it goes beyond a medical construct in describing cognitive, psychological, and social differences that follow from but are not entirely determined by it.