Please Don't Call Yourself an "Autism Mom"

"Is a man not entitled to the sweat of his brow?

... 'No,' says the man in Moscow, 'it belongs to everyone.'

I rejected [that answer]. Instead, I chose something different."

~Andrew Ryan, BioShock

There was an article that ran today in the Huffington Post. It's titled, "Why I Call Myself an 'Autism Mom.'"

A few paragraphs in I was already cringing. This mother starts off admitting she was told that the term "autism mom" is really offensive (and it is - I'll get to the reasons behind that in a minute). She acknowledged the problems...and then went on to argue that she should be able to use the term anyway because of what she thinks it means.

That's issue one. If you're trying to show support for a person or a group of people, and that group comes to you saying, "Please don't do that, it's harmful to us because [insert reasons here]"...the appropriate response is to apologize and not do it again. By persisting in calling herself an "autism mom," she's hurting the very group she's trying to support.

Issue two: She tries to compare it with calling oneself a "soccer mom." The problem here is that "soccer mom" refers to a mother whose children play soccer, and she tries to support their passion. It's not in any way equivalent to saying that "autism mom" means, as this mother argues, that she is "not afraid of the word 'autism'" and tries to support her autistic child.

Soccer is not a disability, and it's not lifelong. If your ten-year-old plays soccer, within a few years one of two things is going to happen. Either he will be able to pursue soccer without needing as much support from you (in the form of driving him to games, making sure he has time to practice, and so on), or he will simply get tired of soccer and move on to something else. Regardless of which it is, you will not be a "soccer mom" forever. Parents of autistic children aren't in that position.

The third issue is this little quote: "I never want anyone to assume that I somehow think my son's autism is about me." But, see, that's exactly what calling yourself an "autism mom" implies.

The community dislikes the term "autism mom" for two reasons. The first is that, plain and simple, you are not parenting a developmental disorder. You're parenting an autistic child who has complex needs, desires, thoughts, and feelings.

(What I especially don't understand is when you insist on referring to your child - as this author does - as a "person with autism," but then turn around and call yourself an "autism mom." Isn't that a bit contradictory?)

That leads into the second reason the community doesn't like this term. By calling yourself an "autism mom," you're claiming a term that isn't yours.

I have autism. I'm always going to be autistic. That means that when I walk into a room, my autism comes with me. I can't ask a babysitter or respite program to watch it for a weekend, a night, or even a few hours. When it was time for school, I didn't get to send my autism by itself and be away from it for 6-8 hours, five days a week, thirteen years in a row. And my autism will never leave for college, move out, or be placed in a group home one day. I will have it until the day I die.

I'm not denying this mother loves and supports her child. I don't know her. But I do know that there was a time in her life when autism didn't apply to her.

She argues that "neurotypical parents of children with autism need to be able to identify other parents in the same circumstances." I quite agree. You're absolutely, one hundred percent welcome to identify yourselves as just that - parents of autistic children.

But it's just not possible to respect your autistic children without respecting autistic adults. Autistic adults approached this mother to tell her that the term "autism mom" is disrespectful and hurts all of us - and she spit in their faces. She wrote this article to tell those autistic adults, in essence, that her opinion was more important than theirs.

So, to the author of this article, let me ask you something. Is that the way you want neurotypical people to treat your son when he's ready to advocate for himself? Is that the kind of response you hope he'll get?

If not, how would you like them to answer him?