My nephew is a wonderful young teen with autism. He is an intelligent, interesting, and caring person, and his parents (with the support of the rest of us) are doing an outstanding job of getting him the therapies and assistance he needs to learn the stuff that’s less intuitive for his brain wiring than for mine.
So what’s the problem? The problem is that my mother keeps referring to him as having Asperger’s. Even before they stopped using the Asperger’s diagnosis, it was never my nephew’s. He was diagnosed with autism. But Mom keeps saying Asperger’s – I don’t know why. I think she thinks there’s less stigma? (But there will continue to be more stigma if people don’t see that bright, funny, sweet people like my nephew are, in fact, what autism looks like.) Or maybe it’s that it sounds higher-functioning? (But…my nephew has the brain he has. Difficulties and joys and all. Just like the rest of us.)
I wouldn’t worry about the label – Kid is Kid, no two autistic people are the same.We work with how Kid is and not a label – except that Mom seems to come home from their house to say things like, “Kid wasn’t on great behavior today,” or, “I didn’t see a lot of maturity from Kid this visit.” Like any person, Kid has times when he’s a jerk or immature – but most of the stuff Mom is talking about is not actually him behaving badly, it’s him being autistic. So I’m concerned that her use of a label that isn’t accurate for him is feeding into her not perceiving his behavior accurately. She’s very patient and loving with him when she’s been saying these things to me, so I’m not concerned about how she treats him, just about her perceptions and how she passes them on to the outside world. How much should I push back on this? How should I push back on this? I know she just wants him to be as okay as possible, but he IS okay – just not the same okay as I am.
Dear Ally Auntie,
Wow. There’s an awful lot packed into this letter.
First, for those reading this unfamiliar with some of this terminology and the history of it, here it is in a nutshell: autism is a neurological variation that occurs in about one percent of the population and is classified as a developmental disability. It affects a person’s instinctive ability to communicate with, understand, and interact with others. It also includes some sometimes seriously disruptive sensory integration issues such as intense reactions to loud sounds, bright lights, and certain tactile experiences. These characteristics can combine to create some behaviors that seem antisocial or immature as well as some intense outbursts.“Asperger’s” used to be a sub-classification of autism for those displaying fewer autistic traits, a designation that was artificial and simply based on the name of a researcher. Therefore, the Diagnostic and Statistical Manual of Mental Disorders (DSM), the standard classification of mental disorders used by mental health professionals in the United States, recently revised their guidelines for the autism spectrum, categorizing it all as autism spectrum disorder (ASD) and removing “Asperger’s” entirely.
Autism and Asperger’s – in case you have been living in a paper bag under a log in a cave behind a waterfall for the last ten years – is also surrounded by stigma, confusion, misunderstanding, and a fair bit of apoplexy in our society at large. Autism and Asperger’s has been blamed for mass shootings, sociopathic behavior, a lack of empathy, and even the inability for certain misogynistic nerds to get laid.
Because of the complexity of this difference/disorder, the fact that it affects different individuals in varying degrees (that’s why it’s often called the autism spectrum, or autism spectrum disorder), and the stigma, there is a great deal of emotion surrounding autism, autistic people, and the language we use.
The way I described autism and autistic people (not people with autism) above, for instance, is a very specific political point of view based on social theories of disability. I believe from the wording of this question that this letter-writer and I share the same basic framework of understanding for autism.
But it sounds like, Ally Auntie, your mother does not have the grounding in these issues that you and I do. I’m guessing that she, like many people, has the mistaken impression that autism = rocking in the corner, nonverbal, and Asperger’s = lovable mathematical nerd genius who needs to take classes in order to make small talk.
It also sounds like, since you’re writing me instead of talking directly with her, that she is not the kind of person you can look dead in the eye and say: “Hey, Mom. Quit saying he has Asperger’s. He has autism. Using the wrong terminology is not only medically inaccurate, it’s damaging to people’s perception of autism, and I think you’re expecting too much of him with this idea in your head that he has Asperger’s. Double-you tee eff.”
So here’s what I suggest: the next time she uses the word “Asperger’s,” stop her and say: “Mom, can you explain why you use the word ‘Asperger’s?’” This can start a conversation instead of a lecture, and it may give you a chance to educate her on this topic in a back-and-forth chat. I think during this talk it would be great to work in that neurotypical relatives of autistic people often have to function as Autism Ambassadors to the world, and that you would love to talk with her about how autism affects maturity levels and behavior.You can even, if you think she’s receptive, talk about the importance of fighting stigma itself instead of trying to help individuals avoid it by being ‘stealth autistics.’
It sounds like she is a very loving grandma who might just need some more education on the effects of autism, but also on the sociopolitical implications of how we use language relating to autism. I think the best place to turn for learning about this is to autistic people themselves, and an excellent place to start is the Autistic Self-Advocacy Network, run by and for autistic people.They do a really great job defining autism and advocating for autistic people, which is what I believe you are hoping your mother will start to do.
Good luck! You are a very good Auntie.
This letter originally appeared in bitterempire.com on May 8, 2015.