Today In Journalism: Autistic Adults Need Not Comment

I was browsing the New York Times Magazine online this morning when I saw a story in the sidebar, ‘When Autistic Children Become Adults,’ from the Motherlode blog. Hmmm, I thought. This might be interesting.

The article opens with a discussion of the rise in autism diagnoses over the last half of the 20th century, and points out that growing numbers of people diagnosed with autism as children are growing into adulthood, with an estimated 88,000 autistic adults in the US today and numbers that will only grow larger in the coming decades. All well and good, an interesting thing to talk about, but the sole focus of the article is on parents of autistic people.

What to do for the wave of children with autism when they grow into adults? There are an estimated 88,000 such adults today, and their parents all face the anxiety that hundreds of thousands more parents will confront in coming years.

Ah, yes, the parents. Yes, by all means, let’s focus on the ‘anxiety’ of the parents, because that is the important thing here; let’s not talk, for example, about the pressure to institutionalise autistic adults and what that means for actual autistic adults, no, let’s focus on what that means for the parents. Let’s not talk about lack of social equality for people with disabilities in general, about ableism and discrimination, about why it is that parents and caregivers are taken as authorities on disability over actual people with disabilities. Let’s not talk about the very real fears that people with autism have about being institutionalised and abused. The story links to a longer piece discussing the growing numbers of autistic adults, and again focusing on what parents are supposed to do, and concludes:

Then, those of you who are struggling with this question in your own life, please use the comments to discuss your plans and fears for your children — and let us know how the rest of us can “actively root” for them as they navigate the future.

Notice anyone missing from this statement? I sure did.

Despite discussing the fact that there are autistic adults right now, their opinions were not solicited, and parents were invited to tell readers how to support adults with autism. Parents. Not autistic adults. I guess we would have nothing of interest or relevance to say, eh? In the comments, which I do not recommend, an autistic adults did speak up, but not to challenge the narrative put forward in the article, that parents, rather than actual people with autism, should be the trustworthy sources of information on this issue.

Anna’s written here about self-appointed ‘advocates’ speaking for people with autism and all the problems embedded in that. This is a serious issue for many people with disabilities, but with autism, it is perhaps most stark, and most striking. We have major autism organisations without a single person with autism on their boards. Run entirely by parents, and sometimes actively rejecting input and requests for discussion from autistic people.

Of course, the comments exploded with a furor of ridiculousness as people demonstrated their ignorance about the deinstitutionalisation movement and other topics. Rank hatred oozed out of many of the comments, and if autistic adults hadn’t already been basically excluded already, they certainly wouldn’t have wanted to join in the conversation after scrolling through the comments to get to the submission box. The article made it crystal clear that commentary from us wasn’t deemed necessary or desirable, as did the comments.

It’s natural and understandable for parents to be concerned about the welfare of their children, and parents fighting hard to keep their children out of institutions and abusive situations most definitely have reason to be worried about what will happen when they die. I’m not saying parents don’t matter, but I am saying that it is not appropriate to position them as authorities over actual people with autism, including their own children. I am saying that people without autism should not be spokespeople for people with autism, that any conversation about ‘what to do with autistic adults’ should include autistic adults.

Yes, I would expect a parenting blog to focus on parenting, but an important part of parenting, to my understanding, seems to be supporting autonomy and self determination for your children, allowing them to speak for themselves, allowing them to become fully integrated members of society. This is most definitely an issue of relevance to parents, and part of parenting is knowing when to speak, and when to listen. It’s time to listen to people with autism, not their parents, and that includes autistic parents who may have some insightful input into this discussion; the underlying assumption in this article is that no parents have autism, and that is demonstrably untrue.

We want to talk about how to ‘support’ autistic adults? How about asking actual people with autism for their opinion on the matter instead of hosting free-for alls filled with ignorance and hatred in the comment sections of major newspapers?

About s.e. smith

s.e. smith is a recalcitrant, grumpy person with disabilities who enjoys riling people up, talking about language, tearing apart poor science reporting, and chasing cats around the house with squeaky mice in hand. Ou personal website can be found at this ain't livin'.

16 thoughts on “Today In Journalism: Autistic Adults Need Not Comment

  1. Thank you, thank you, thank you. I saw that and was seriously irritated, though not surprised.

    I actually once wrote an e-mail to the blog author, Lisa Belkin, after she published an incredibly demeaning article about autism which was the typical ableist parent narrative. I objected to that strongly, and Ms. Belkin was actually quite interested in my views. She published the e-mail with my permission. Many of the comments were…pretty awful. Standard tropes: I’m not really autistic (even though I have the exact same diagnosis as the child of the parent who wrote the original article), I’m ungrateful to my parents, it’s clear that I have no empathy, etc. Unfortunately, subsequent articles about autism (and disability in general) on that blog have been in the typical, ableist mode, and the majority of comments are no different. Just…urgh. I was happy to get a different view out there on the blog, but it seems to have made no long-term impact on either Ms. Belkin or her readers. A real shame.

  2. I didn’t see that blog, and I’m glad I didn’t.

    My son is 2 and a half, and we’re just setting out here. But the more I read and the more I learn, the more irritated I become at how many have some ridiculous assumption that autism doesn’t have its own voice. Give me a break! There are LOTS of autistic adults who are way more qualified than anyone else to explain their thoughts, feelings, and opinions on issues that directly concern them.

    When my son is able to speak for himself, I want him to have the opportunity. He has his OWN voice, and I want to hear it!

  3. Ah, so not surpririsng. I, as an institutionalized autistic, find myself alienated by both sides of the sitution: parents don’t want to hear my views because I am too “high-functioning”, and anti-institution disability advocates often alienate me with the conditional nature of the deinstitutionalization philosophy (I’m not saying the philosophy originally was like that, but it is oftenw orded that way).

  4. ” the wave of children with autism ” No, this isn’t the first time lots of children with autism have grown into adults, though it might be the first time that lots of children have moved onto adult with a diagnosis. A lot of older people were not diagnosed as children. Shoot, I’m 21 and I wasn’t. It’s not like I suddenly turned autistic at 20, if anything I am far more functional now than I was a decade ago.

    ” I would expect a parenting blog to focus on parenting, but an important part of parenting, to my understanding, seems to be supporting autonomy …” that whole section was dead on. Also, a parenting blog discussing adults with autism could actually discuss autistic parents.

  5. Anyone remember that whiney siblings piece they did a few years ago? They were all offended that non spectrum siblings suck too, adn that I had the audacity to tell them.

    If you’re up to it, write a letter to the editor (or maybe I will). They may publish it in the paper edition. Then don’t read the comments, bc people are jerks. But it’s a statement that we exist that NYT shouldnt be ignoring.

  6. I just wrote a blog piece yesterday about this very subject—namely the lack of empathy on the part of many non-autistic parents for the feelings, experiences, and thoughts of those of us who are actual autistic adults.

    I read so much about how terribly, terribly difficult it is to raise a child on the spectrum and so little from the very same people about how terribly, terribly difficult it is to be an autistic person and put up with a world that thinks we have no feelings and no empathy and wants to “cure” us because we’ve got a “disease” worse than….well, almost anything. It’s not that I don’t have empathy for the parents. I do. I’m a parent, too. I just wish that more of them had the same amount of empathy for us.

    And yeah, this “epidemic of autism” thing is such nonsense. Just shake my family tree and watch how many autists fall out! I was autistic 52 years ago, and I still am. My father was autistic, his aunt was autistic, and you’d better believe that we’re not the first ones.

  7. Your point that it’s time for people to stop putting parents over people with autism when it comes to dealing with advocacy issues is a good one. The difficulty I think (as a parent) is that for many of us, when our children were young, there were so few that understood the nature of autism or autism spectrum disorders. So like other parents you plod along and struggle to “do the right things” based on what “experts” tell you.

    When your child gets older this habit is hard to get out of.

    Particularly when the real expert is probably standing right in front of you.

  8. I hear this sort of thing regularly at meetings of organizations that are primarily run by parents who are not on the spectrum: “Please introduce yourself and tell a bit about your child on the spectrum.” It leaves the few autistic adults who attend completely out of the equation. Things like this are said even when the people saying them *now* we are at the meeting! I think it’s just a habit, but also it does imply, if not a lack of empathy, something to be desired in the “social graces” area.

  9. I’m an autistic adult, and I have a theory about the “epidemic” of autism. I agree with Rachel’s point that there have always been autistics–probably, our percentage of the population has remained consistent. I think, though, that our modern, fast-moving, clamor-filled society is far more disabling to autistics than any previous time in our history. That’s why I think autistic children–who, in a previous decade or century, might have been the oddballs who eschewed “society”, the eccentric scholars–are now spinning, rocking, head-banging, melting down and shutting down at younger and younger ages.

    I don’t think there has ever been such a sensory *onslaught* before as now exists in almost every workplace, business, mode of transportation–and most homes. There’s also the *pace* of modern life, and all the “activities” that many families engage in, especially if they have several children–drop off that one for practice, that one for lessons, go to the store, pick up the dry-cleaning. I also think–perhaps with good reason–that parents now are loathe to leave their young children alone and will pack them in the car and take them on errands. What does all that speed and rapid, repeated change in environments and situations do to an autistic child? When I was young (I’m almost 50 now), I had the run of my neighborhood as long as I was home for dinner–I was usually off by myself, exploring the tall grasses in an overgrown field. I can’t imagine how stressed I’d have been if forced to accompany my mother everywhere she went!

    I saw a study somewhere that stated that Amish communities have lower rates of autism than the general population. This was used as an anti-vaccine argument, but I think it might be due to the slower and quieter life experienced by Amish people.

  10. Rina, brilliantly said! I think you’re absolutely right.

    You and I are around the same age, and I remember a much slower, quieter, easier pace of life when I was young. I spent most of my time in good weather getting together with the other kids to play baseball, football, any game at all, which gave me the chance to burn off my energy and get lots and lots of proprioceptive input in the process. In the winter, I’d spent my days walking up hills and sledding down them. I don’t recall my mother ever driving me to a play date, or an activity at the Y, or to anything else in an enclosed, loud, stressed-out space, and I never felt overscheduled. When we went out, there were no televisions in waiting rooms or restaurants, and no loud music blaring from speakers in the shops. It’s probably why I coped as well as I did without all the interventions that are available to kids now.

  11. Those numbers sure are wonky, aren’t they? There are about 310 million people in the US, so that means there are about 3.1 million of us on the autism spectrum. Three million! It’s a huge number. Roughly 3/4 of the population are adults, so that means there are about 2.325 million adults on the autism spectrum right now in the US alone.

    And yet we can’t be included in discussions of our collective future, because there is no such thing as a good autistic adult. If we require daily supports like group homes, we are too disabled (and “retarded,” often) to self-advocate. If we don’t require daily supports then we’re faking it. If we require some supports and not others, we’re faking it. No matter what we do to help ourselves and fill each of our individual potentials, we are wrong.
    Ali´s last blog post ..and I will wait

  12. Thank you for this well-written post! It has always amazed me that people just cannot seem to grasp the concept that people should be consulting with autistic adults before making decisions about them. Common sense is just not very common in our society, is it?

    Yes, parents should have a say, but I’m growing increasingly infuriated by how *much* rides on what parents say and how no opinions are asked of autistic adults or youth.

    Research studies always seem to be focused on the parents. Articles are focused on the parents (and sometimes the siblings if the journalists really want a sob story about how horrible it is to live with an autistic person). No one seems to even want to consider that autistic adults might have something valuable to say on this issue of *their own bodies, their own minds and their own well being*! No one seems to think that some of us might be offended by the constant barrage of doom and gloom that gets published about us all the time. The ad campaigns, the newspaper articles, etc., are almost all negative. How can one live with this kind of rubbish bein spewed out about them day and night? It’s not a nice world to live in!

    If I were to write an article about how much people in Spain like ice cream, would it not make sense for me to ask people in Spain how they like ice cream or do a survey among people in Spain? Would it make any sense for me to make an assumption about how much people in Spain like ice cream by surveying or asking people in Italy or England and not asking the people in Spain? No, it would not. My article would be thrown out and/or laughed at!

    Yet this kind of (poor) standard in journalism, research and medicine is perfectly ok with regard to autism. It would not be acceptable with any other subject. Medical journals would write off an article as being invalid if it was written about anyone except the subjects of the research; unless it’s about autism.

    I’m sorry if I offend any parents, but my parents had, and still have, *no* idea about what was going on in my body and mind! How could they? They are not me! I love them dearly and I know they did thir best and that is ok. They are only just starting to see how damaging some of the things that were done to me as a child in Lovass style ABA were for me. They are only now acknowledging the physical pain I had to go through with the ignored medical issues that almost killed me 11 years ago. (They saw that and it scared the bejeebers out of them!)

    Trust me when I say that parents should not be the only source of information. They do what they can and they love their kids with all their hearts, but they can only know and do so much. Just like I could not posibly know what it’s like to NT, a NT cannot possibly know what it’s like to be autistic. That is just the way of things.

    There needs to be a more balanced approach, in my opinion. Why not ask autistic people *and* parents?

    That just might make too much sense… *sigh* Oh well, one can continue to hope an try to make the change from within.

    On another note, some societies are starting to listen to people on the spectrum. Well, one in my locale is because I got voted on as Chair of the Board of Directors for an autism agency just last year and I am loving it! Our agency has grown so much in the last year and has actually improved its services to families. I only hope this trend catches on – imagine what would happen if all autism societies had autistic people on their Boards! :^)

  13. Arak, I found your comment really powerful and well written, but I want to dispute your claim that only autistics are treated as inferior sources of information when parents or other family is available. It seems that this also applies to any other developmental disabilities and with diseases or disabilities that begin in childhood. Sadly, we are but a fraction of the overall group that is ignored in favour of talking to families and friends to learn about us.

  14. That number makes me dubious. 88 thousand – in the US, I assume? That’s what this sort of number usually means – seems far far FAR too low. If this is just diagnosed adults (STILL seems low) I’d expect at least a nod at the fact that it is extremely likely there are huge swathes of nondiagnosed autistic adults out there.

    I have a pretty knee-jerk reaction against this stuff because, well, I had a lot of difficulty with my family wrt autism. They denied there was a possibility I could be autistic for years, it felt to me as if I dragged my mother into believing I was kicking and screaming and although post-diagnosis I’ve tried making them understand what this means for me some of the comments I’ve received have made it clear that they really don’t get it. (“oh, but you have AS, you’re not like those AUTISTIC people!” “what do you mean, it offends you when we act as if someone calling you autistic is slandering you horribly?”) The idea that there are people out there who would not only consider my parents “autism experts” but would take their word over *mine* makes my blood boil.

  15. Oh yes, want to add my voice in with Ali’s – the way autistic people get treated in terms of having their voices denied is flat-out horrible but let’s not play Oppression Olympics. A lot of other disabled people aren’t treated any better in that regard.

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