a parliament of owls

life with asperger's

Tag: disability

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.

Question:

“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.]

Responding to /Neurotribes/

I’ve just finished reading Steve Silberman’s Neurotribes. This book creates the first comprehensive history of autistics, linking us to our progression of diagnosis and treatment in the West and to other cultural groups including the disability activist movement (within autism, first dominated by parents and then taken up by ourselves) and electronics / computer / ham radio / internet and sci fi-fantasy fandoms (which gave us a home among other eccentrics — my husband and I have long called sci fi-fantasy fandom our “tribe”). The first third or so of the book hit me hard — it was difficult to get through — because of the misunderstanding and mistreatment of people on the spectrum (dehumanization, extermination, institutionalization).

The overall narrative moves from how we were defined by others, through the lens of pathology, to become defined in cooperation with others as well as by and for ourselves. Some of the writing is feel-good glib (too neatly concluded, too optimistically joined — he loves a hero narrative) and the author definitely takes sides on some of our internal controversies (sides I usually agree with, but sides nonetheless). For example, not everyone diagnosed with autism feels comfortable with its being understood as either a major filter for our perception / cognition or as the/a crucial dimension of our subjectivity / social identification.

Why does this matter? Because, by extension, not everyone diagnosed with autism wants to be part of a community of autistics or wants to belong to a cultural group identified with autism. Even those of us who do have our limits. Silberman seems to think that these are by default good things, empowering things — he has an extrovert’s bias. Community is always already positive, desirable, even to the point of nostalgic fantasies of autistics meeting in conventions and grokking one another, sleeping in public near one another, stimming together in hallways — I can’t tell you how uncomfortable these descriptions of communal experiences made me (head for the hills!).

Despite discomfort with the rather emotional and physically embodied models of community Silberman evokes, I spend hours each week giving anonymous advice online to other autistics and their loved ones and benefit from feeling a part of that community because it has helped me to understand and accept myself. At the same time, my son would rather not be part of the community, or even think of himself primarily as autistic, but pass as neurotypical because that helps him to feel unremarked and capable. Both can be decent options as long as the clinical label isn’t used to exclude, reduce, and deny (as it has too often in the past and sometimes continues to do in the present).

But Silberman also champions the cause of neurodiversity and its value to society. Although that is often reduced to its practical benefits (ala Temple Grandin), maybe that is a start to others accepting that humanity benefits when we broaden our sense of who matters (all of us) and how we ought to treat them (with kindness and inclusion). For this and for the comprehensive history of autistics told here for the first time, this is truly a valuable book, one that expands our potential for understanding difference along a different vector than we usually think of and are more familiar with as a general society or as academics (race, gender, class, sexuality, religion, etc.).