Fourteen Things Not to Say to Dee (about Autism)

This is my personalized version of the “Fourteen Things Not to Say to an Autistic Adult.” I haven’t gotten all of these yet, but I’m fairly certain I will eventually.

1) “You don’t look autistic.”

What do I look like, then? What does autistic look like? The only time this phrase might be anywhere near appropriate is if you’re a neurology expert looking at my brain scan.

2) “You can’t be autistic because…”

You can’t be serious. Again, unless you actually have the qualifications…

3) “Don’t call yourself autistic. You’re a person with autism. You must use person-first language.”

I understand the concept and the reasoning behind person-first language, and I default to it when talking about other people. However, I’ll call myself whatever I damned well please, and respect other people’s preferences when referring to themselves. I know a woman whose daughter insists on being called Batman. Who am I to stop her? Until she says otherwise, she’s the motherfrakking Batman.

4) “Are you like Rainman?”

To quote Dustin Hoffman in that role, “I don’t think so. No. Definitely not.”

5) “You’re autistic? Does that mean you’re retarded?”

Excuse me while I throw the DSM-V at you. The term “retarded” is offensive as hell.

6) “You’re too intelligent to be autistic.”

See #5.

7) “You’re not autistic. You just have Asperger’s.”

I got that from a psychiatrist a couple of weeks ago, actually, so I’ll tell you what I told him:
There are two reasons I don’t have Asperger’s. First of all, Asperger’s is no longer a diagnosis in the DSM-V. It’s been wrapped up in the Autism Spectrum. Second, I don’t fit the DSM-IV criteria for Asperger’s Syndrome because I had a speech delay, and the definition of Asperger’s requires that you don’t have a speech delay.

Third, “just” have Asperger’s? Way to belittle millions of people!

8) “You must be high-functioning.”

It depends on your definition of “functioning.” There have been times in my life where I was very low-functioning.

There’s also the concept that functioning labels are all sorts of wrong. I’m not so sure about that right now; functioning labels are convenient for clinicians, at the very least. It’s like an obstetrician telling a midwife that a woman is at -3 station; it’s jargon that helps the physicians determine the appropriate treatment for a person and her situation. What I’m trying to say is that certain terminology useful when used correctly. Too bad it’s not always used correctly.

I also remember a time when my therapist referred to me as being high-functioning, though she was speaking in regards to my supposed bipolar disorder (a diagnosis that has since been ruled out). I just gave her a look, because to me, it was a phrase used to describe people with  DD (developmental disabilities), usually with mental retardation, and I didn’t think I was one of those people. I didn’t want to steal a term that belonged to someone else, so to speak.

9) “I know an autistic person, and you don’t act like he or she does.”

Let’s replace “autistic” in that sentence with practically any other descriptive term for a person, shall we?
“I know a Black person…”
“I know a blonde person…”
“I know a straight person…”
“I know an Indian person…”

I hope you can see how this could be problematic.

10) “You don’t act like you’re autistic.”

Why thank you; you have no idea how much energy and effort I place into seeming relatively ordinary.

11) “You’re just saying you have [autism] to get away with being rude.”

Nope. Life is too short for me to be intentionally rude. Also, if I were unintentionally rude, I’d want to know exactly how, so I can avoid it in the future.

12) “My friend’s/neighbour’s/second cousin twice removed’s child had autism, but they put him on a special diet and he got better.”

Good for that person!

13) “You can get over it. It’s just in your head. It’s not physical.”

Yes and no. It is in my head (studies show that the brains of people with autism are markedly different from other brains), but it’s also physical.

or,

You can get over being left-(or right-)handed. It’s just in your head.

or

You can get over having a stroke. It’s just in your head.

14) “You seem so normal!” “I can’t believe you have autism!” “You are doing really well, so you must be so proud of yourself.”

Believe it. Considering the tendency for girls to be under-diagnosed, the fact that I had a diagnosis at age four really says something. “Doing really well” is relative. One of the people at the place that gave me the diagnosis recently told me that I was so successful, most likely because I have a spouse, kid, and bachelor’s degree. However, I don’t feel that way because I don’t have a job outside the home, and am therefore not putting that degree to good use. I also don’t feel like I’m successful at my actual job of being a stay-at-home mom, because I often have trouble figuring how how to interact with my son, and I’m a horrible housekeeper.

As I said, success is relative.

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