Autism Families, not “Autistic Families”
From the November 25th Drudge Retort:
Clinton: Boost Autism Funding
Democrat Hillary Rodham Clinton on Saturday pledged to help autistic families [my emphasis] by boosting funding for research and education to $700 million a year. “I think it’s time we had a government and a president who recognized the seriousness of autism and addressed it head-on,” Clinton said.
Maybe it’s a small point, but I’m assuming that helping “autism families”—families with an autistic children—was what was meant. People who are diagnosed with autism are “autistic”; families that have an autistic child or other relative can be called “autism families.” (We don’t speak about “ADHD families” or “anorexic families”……..) Unless, of course, the Drudge Retort meant to write about “autistic funding.”
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20 opinions for Autism Families, not “Autistic Families”
chaoticidealism
Nov 26, 2007 at 4:06 pm
A little accuracy, Ms. Clinton!! It’s rather rare that the entire family has autism–usually, it’s just one child; and that child does not take over the whole family. That’s what counselors tell families with a special-needs kid all the time: He’s one of your kids, he needs more than the others, but the others are people in their own right too, and don’t you dare forget them or turn them into little mothers. And here she is, assuming that not only does this always happen in a family with an autistic kid (she doesn’t even consider autistic parents), but she seems to think it’s inevitable. Uh-uh. Nope.
My family is one example of an “autistic family”–both parents and two out of three daughters are autistic–but I doubt that’s what she meant. If she actually did want to help families like ours, that’d be nice–especially if it was by making sure the parents had jobs and the kids had proper education. But I doubt it. She’d probably want to “prevent” us.
Kristina Chew, PhD
Nov 26, 2007 at 5:14 pm
The radio host who interviewed me today initially referred to “autistic families” and quickly reworded this into something more along the lines of families with an autistic child. The idea that people do not want to “prevent autism” seems strange to most people—there’s a lot of work that needs to be done to get the word out that it can be otherwise.
theasman
Nov 26, 2007 at 7:46 pm
saw this on that drudge retort
It’s time for us to stand up to the autism companies and increase our use of renewable children.”
–Hillary!
dear god help us all
Cliff
Nov 26, 2007 at 10:29 pm
I see why the adjectival is used (”autism” is typically seen as a noun, so as an adjective probably catches anyone who sees it), though I also understand why that can be seen as describing the whole family (as it does, normally). And then, does “autism family” really ring differently than “ADHD family”? Would we use “anorexia family”?
Which leads to the more potent point; no one says ADHD family because, for various reasons, a term for an exclusive unit for families with ADHD individuals simply isn’t needed. Or perhaps I’m simply not involved in discussions regarding ADHD and anorexia. But it seems, at least to autism, that a standard usage for an exclusive unit for families related to an individual isn’t known to me.
Cliff
Amalthea
Nov 27, 2007 at 12:20 am
Blecch. That wording always reminds me of this one particularly aggravating site I stumbled across called “We Have Autism” which was inexplicably NOT by or for autistics at all but rather ’support’ for their parents and family members.
I’d initially been completely confused and irritated at the seeming re-definition of what it means to “have” something, but now I’m wondering now if that came out of the same sort of tortured logic that led to Hillary Clinton’s comment.
Kassiane
Nov 27, 2007 at 12:27 am
I absolutely hate that BS about “when one member of the family has autism the whole family has autism”.
Unless it’s like my friend’s family where they really ARE all autistic. But that isn’t particularly common, they don’t even like to let us grow up.
Amanda
Nov 27, 2007 at 1:25 am
My family is an entirely neuro-atypical family. Majority are also autistic, but the neuro-atypicality doesn’t end there.
I don’t like “autistic family” at all. I’ve written about that before.
I am actually not that fond of “autism family,” “autism mother,” “autism father,” etc., either though. Something about it smells wrong, but I can’t explain it.
I would prefer “family with autistic members,” “mother of an autistic child,” “father of an autistic child”.
They sound more real.
I can’t explain though why I don’t like “autism mother”. “Autistic mother” definitely bothers me more, but “autism mother” also bothers me.
My parents are not asthma parents, or hyperactivity parents, or learning disability parents, or hyperlexia parents, or migraine parents, or allergy parents, or hypermobility parents, even though some or all of their kids (as well as some or all of them) have those diagnoses. Those terms do not make sense. So why should “autism parents” make sense?
It seems like a rewording of a very similar idea, that an attribute of one family member becomes an attribute of another. I know you mean it differently but something about it rings false.
Every single one of us is asthmatic in fact, so we could be an “asthmatic family” and that’d make sense, but “asthma family” just makes me think of asthma-hound chihuahuas, and doesn’t sound right. And if only some of us were asthmatic we wouldn’t be asthmatic family but we wouldn’t be an asthma family either.
Furthermore, I’m female. I only have one female parent, not two, and that’s because she’s female, not because I am. Neither of my parents, however, is a femaleness parent, or a maleness parent for that matter.
So they’re not autism parents and there’s something about the term that bugs me (and while autistic family bothers me in a straightforward way in terms of word usage, autism family bothers me in a much less straightforward and more niggling way).
Kristina Chew, PhD
Nov 27, 2007 at 1:58 am
I actually feel a bit of a twinge when I write “autism mother.” But I think it’s become a familiar shorthand and therefore overdue for reconsidering—from a grammatical perspective, it’s awkward, as I’m using/forcing a noun to act like an adjective.
Cliff
Nov 27, 2007 at 4:35 am
I prefer the descriptive version, as well. But “families with members with autism” (or worse, the more general “families with members on the autistic spectrum”, or even worse, “families with a member/members on the autistic spectrum”. I’ve seen both used) is awkward when use frequently, so there is a desire for a generally short, understood label. Not that I agree on that point, but it is such that people generally shy away from it.
But the alternatives are messy, as we can see. “Autistic” is inclusive, “autism” makes the oddity of sticking a noun in as an adjective, and then there’s the dreaded “those affected by autism” (what, really, does that mean? That’s such a large umbrella that it’s virtually useless).
But, as Kassiane points out directly, and I alluded to, there is an over encompassing need to include the family in the “autism experience” (for a complete lack of a better term, tacky as that sounds). This point is useful in degree to describe the situation of the family with an autistic member (which has influencing factors, to be certain). But this logic somehow makes the mistake of assuming autism itself is shared in that experience, and that’s not necessarily true at all (perhaps autistic tendencies could be promoted, so it’s not a complete statement, but even that is circumstantial).
To be honest, the terminology is not mainstreamed at all (though we all have particular usages). Actually, the use of the noun as an adjective regarding autism, for me, was first seen here. But that’s hardly criticism, because it seems that there hasn’t been much of a mind made up about that.
Cliff
Autismville
Nov 27, 2007 at 1:36 pm
Semantics … just not a big deal to me personally.
Eleanor
Nov 27, 2007 at 3:21 pm
“Autistic family” seems to me to be a useful term for describing families in which autism is prevalent, but that doesn’t appear to be the way it was being used here. And I think “hyperlexia family” (which my family certainly is) and even “ADHD family” are also potentially useful terms to the extent that they are used to describe traits that appear to run in families.
Leanne
Nov 27, 2007 at 6:05 pm
I think I’m going to give “family with an autistic member” a try.
Misha
Nov 27, 2007 at 11:32 pm
I’ve always said I’m a mom of an autistic son and we’re a family with an autistic member. I’ve never liked the other terms that are so commonly heard. To me, whenever I hear or read “autism mom” or “autism family”, I instantly get the picture of a mom or family that’s “devastated” by the disability. The focus shifts and is put solely on them and their “suffering” while the autistic family member is pushed to the background. Little to no attention is given to that person. To me, that’s not right. While it’s important to know what a mom and family deals with, what the autistic person deals with is IMO more important. To me, the terms take away from that and it’s something I don’t like.
Amanda
Nov 28, 2007 at 12:27 am
I agree with Misha, although of course if someone can’t think of any other phrase then any phrase is okay. I don’t think it can be reduced to ‘just semantics’ though, because people are saying something with this.
Personally whenever I hear “autistic parent” I think of someone like my father, who is a parent and is also autistic. It is confusing and somewhat frustrating to hear “autistic parent” refer to someone who is not autistic but is a parent.
Regan
Nov 28, 2007 at 12:51 am
Hmm.
I don’t think that I have ever thought of us as an autism family or an autistic family. On musing on it for awhile, I don’t think that I will use either term.
We are a family.
One of our children has been diagnosed with autism.
I can see that some kind of term might be useful as a shorthand (although the specific definition would be all over the map), but I don’t see the use of the label as helpful to us.
Kristina Chew, PhD
Nov 28, 2007 at 1:50 am
This discussion is leading me to think I’ll have to change the description of my blog:
“Mother of autistic son gets on her soapbox.”
“Mother of Charlie gets on her soapbox.”
Or, if I may evoke the “refrigerator mothers” theme:
“Mother of autistic son gets out of the icebox and on her soapbox”
Regan
Nov 28, 2007 at 7:10 pm
Kristina,
I like the “Mother of Charlie”.
(I’ll be the “Mother of Eleanor).
Doesn’t it throw the whole thing into focus when we use our kids’ names. Just from my own point of view, that is why I like your blog and other blogs that talk about the children as what they are–individuals in rich complexity.
cynthia
Mar 21, 2008 at 12:07 pm
My daughter is autistic and she just turned 18 this month. I wondering if there is anyone out there that can give me an advice about conservatorship. Some people tell me it’s not important some say I sould get it for my daughter. I asked about it to see how much it cost but I can’t afford it. So, I really want an honest opinion how important conservatorship is for me and my daughter’s future. Please advice.
Thanks in advance.
Teresa
Apr 13, 2008 at 5:56 am
My daughter went through open-heart surgery as a baby, and it was the most difficult time in my life, especially since I had two other small children in the home. There were many sleepless nights and countless trips to the hospital, and I just wanted rest and peace.
The following year, my husband and I started “All About Reaching Children, Inc.” (AARC) and started renting a 22-acre farm in Acworth. Since then, we have brought in over 600 children, anywhere from foster children to youth groups, homeschoolers, Brownie Troops, and even autistic children.
The common thread I noticed is how well children respond to animals, and how much fun they have in nature.
Our home is a nine bedroom, five bath home, and we’ve housed up to 37 teenage girls at one time! In fact, almost every week, we have anywhere from 5-50 people at our home at a time.
After speaking with a therapist who works with autistic children, she recommended that I open my home up to families with a special needs child to spend an entire weekend just to relax as their children got to explore, walk trails, fish and simply interact with the animals. We would take care of the rest.
If this interests you, please feel free to contact me at teresa@allaboutreachingchildren.org
As I think back to all those long days and nights with my own fragile child, my heart is to offer my home as a way of helping others find the rest they need in order to face whatever challenges lie ahead.
Thanks,
Teresa
CEO
AARC, Inc.
Kristina Chew, PhD
Apr 13, 2008 at 1:24 pm
@Teresa, thanks for writing here about AARC, and about your family—-my son is kind of wary of animals at the moment, but he loves, loves, to be outside. Very best and it’s a long road, but good to know so many others walk it.
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