Exponentially nonexistent

Today, I want to talk about this article, published recently on CafeMom. CafeMom can be a bit of a cesspool of ignorance and downright terrible pieces, from ridiculous gossip about celebrities to even telling people to have compassion for a supposed mentally ill mother who murdered her disabled child (not like we haven’t heard that before, but it still is shocking every time I see it).

Really, in all reality, this isn’t the worst piece that has come from the site. But I am, again, feeling like I don’t exist, on many levels.

The myths being dispelled are good, of course. No one wants more than I do to see the world rid of articles suggesting that autistic people don’t have empathy or that vaccines cause autism. I am glad that good information like this exists, and I recognize at least one person quoted in the article, so that’s good, at least.

What I don’t see is anything that makes me believe that autism is anything but something affecting only children. I’m certain that even if we interview people who are parenting autistic children, that there has to be a couple of mothers parenting adult autistic children. But if I were a novice, if I knew nothing about autism and I read this article, I would assume that the problems subsided once a person became an adult.

Why were no adult voices considered? Even if they weren’t quoted, they could very well have been myths dispelled, like “you aren’t like my child. You can do x,y, and z and my child can’t.” Well, no surprise there, because 30 year old adults and 3 year old children rarely have much in common. That is a big myth that could have been tackled, and it wouldn’t have detracted from the tone at all.

Most of the response to such criticism that adults weren’t considered was met with disdain. “This site is for mothers,” they said. “There’s nothing wrong with reaching their target audience.”

Ahem. I am an autistic mother, who is parenting autistic children. No, not an “autism mom”, but a mother who is autistic. If CafeMom is for moms, where do I fit in? Do I even exist at all ?

I wonder sometimes. Every time I hear “where are all the autistic adults”, “but girls are so very rarely diagnosed with autism”, and “disabled people, especially autistic ones, can’t make good parents!”

I feel like I get smaller and less significant every day.

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18 thoughts on “Exponentially nonexistent

  1. Talking about Autistic adults doesn’t take away from the focus on mothering at all! It is important for mothers to be reminded that Autistic children grow up to be Autistic adults. How else will mothers have perspective about what sort of things they need to work on preparing their children for or what elements of society as it stands they need to be concerned about and try to change so that their children will grow up into a world that will be better prepared for those children and better able to treat them with dignity, respect, compassion, and acceptance when they have grown into adults!

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  2. Dude, you know my feels about “autism moms.” Which is technically gramatically incorrect. Are they parenting autism or a child? You are parenting an autistic child. You are not an effing “autism mom.” And as soon as someone says “autism mom” you can almost guarantee that the next thing out of their mouth will be offensive and stupid.

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    1. It’s so true. The ones who tend to not identify that way tend to be the ones who listen and we’ll, are the “presume competence” sort. Brilliant comment, as always. (I also get a bit pedantic about the grammar fail in the phrase)

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  3. You are correct, of course. There should have been an autistic perspective here. I know that both contributors to the article have spoken with the author and are making sure she understands how important that is.

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  4. Last night when I was having insomnia, I started thinking about the “autism mom” phenomenon. And, my conclusion was that there really is no such thing as an “autism mom.” I know. Shock! What there are is moms who have Autistic kids. That’s it. Joining together to offer mutual support and comfort for whatever is human nature. But many of these autism mom sites are really short on long-term perspective and not accepting of the very people their kids will grow up to be. I think many of them are thinking 1. Their kids will be “cured” by then or 2. Their kids won’t grow up, somehow.

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    1. Yep, I agree with this. Most of the “support groups” (ugh, I know moms need support, but these were just ableist and awful) I went to before I received my own diagnosis (and I suppose, I was probably read as disabled but not necessarily autistic) focused on the latest “treatments”, on what doctors to go to, on how to get your insurance to cover a naturopath, etc. I sat in one where an author (whose son’s voice is included as part of her book) talked about her new book and one of the parents asked “yeah, it’s rare to talk to someone who knows an adult autistic. Where are they all?” This was when I knew I was autistic but had no professional diagnosis. I turned to the woman who asked the question and I said, “Right here. I’m right here.” She kind of stammered and again reiterated that we are rare. After that, I stopped receiving the notifications for those meetings, and I don’t consider that to be a coincidence, but I do think I’m better off without the negative messages.

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  5. I just happen to be a mother of a wonderful son who is autistic. From the time of his diagnosis, I never ever treated him like less than. I told him immediately about his autism and from that time on, I have raised him to be proud of who he is, Autism and all! I also immediately sought out autistic adults to talk to, and have made great friends with them. Thing is, many of my friends have said that maybe I’m on the spectrum too. I look at my life and really I think that I may be. It would make alot of things from my past and how I am now make sense. but I have never called myself an Autism mom. See, even though my son is autistic, that is not the first thing I see everyday. I see a very bright, handsome loving young man who hopefully will grow up and be a loving, wonderful, successful man one day even with his autism. I have taught him that his autism is a gift even with some of the downfalls. I see so many moms just not get that. It really annoys me that autistic adults are ever rarely even talked to when these articles are done. It’s almost like they purposely do it, in fact, I wouldn’t doubt it’s on purpose. Because why show regular autistic adults who DO get married, DO have kids, DO go to college and become successes and live everyday lives just like NT’s do.

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    1. Good for you, Tina. I mean that with all sincerity and hope that didn’t come across sarcastically.

      One word of warning – I did have to read this a couple of times to ensure rhat you weren’t trying to say that he’s fantastic in spite of being autistic, which is a thing that some parents say that raises my hackles. I think we are awesome because we are unique individuals (like everyone is!) and autism is a part of that. Not necessarily because of, and not in spite of, either, if that makes sense.

      Thank you for your comment. It truly makes me feel hopeful that not everyone wants to make their autistic kid into a neurotypical one.

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      1. yes i read it over and hoped you wouldn’t think I was saying “inspite of”. really it is part of who he is, and I wouldn’t have it any other way. I, myself, have never felt typical. In fact, I’d like to ask you how you went about getting evaluated and then diagnosed? I have suspected for a while now that I am on the spectrum too. I was misdiagnosed with many things over the years and when I read up on women and how the possibility of autism is often overlooked. I’m almost 43 yrs old and like I said, so much of my life would finally make sense. I don’t believe in self diagnosis, but I’m betting I very much could be on the spectrum. They say autism is genetic. so, I just would like to know. Thanks for having such a great blog. I agree with so much of what you have to say whether I may be on the spectrum or not. Autistic people exist and should be recognized, not treated like objects or as if they are invisible.

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  6. Hi! When Landon over at ThAutcast re-posted this article, I was one of the commenters who said, “Consider the audience for CafeMom.” I want to apologize to you for sounding disdainful and making you feel small. What I meant to respond to was the idea that a short post about parenting autistic children made sense on a parenting site. What I did *not* mean to excuse was leaving out any input from autistic adults. What I failed completely to realize, until reading your essay, is that leaving out any mention of autistic parents (not autism moms, I’ve always hated that too) is yet another disservice. Thanks for teaching me something today, and here’s to feeling and living large!

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  7. Yes many autism moms do seem to believe their child will be cured before reaching adulthood. I’m glad to see one of the commenters acknowledge that because it is a sad reality. That is why many parents don’t make good advocates because they are really focused on some magical cure.

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