Whose Planet Is It Anyway?

Thursday, June 12, 2008

That Must Be So Hard

During the Good Morning America segment on neurodiversity, Kristina Chew corrected the interviewer's suggestion that she was suffering because she is a parent of an autistic child. "I don't feel that I suffer," she replied. On Kristina's blog, a commenter named Sharon discussed how widespread this view of inevitable suffering has become, and how often she, as a parent, has to deal with this assumption that she must be suffering. Sharon wrote:

I know when I tell people that my sons have autism, the look of pity on their face and they say "That must be so hard."

Reading that comment, I was reminded of a conversation that I had almost 25 years ago with an older white woman, who was generally a nice and well-meaning person and who thought of herself as tolerant, but who—like many of her generation—had more racial preconceptions than she realized. We were talking about an African-American woman who had a light complexion, and I mentioned that her children all looked very much like her husband, whose skin was much darker.

I wasn't thinking about it in racial terms and just meant to comment on the children's close resemblance to their father; but much to my surprise, the response that I got—complete with a pitying sigh—was "That must be hard for her." Not sure what to say to that, I just stammered something to the effect that I thought she was happy to have three healthy children, no matter what color they were.

Times have changed, and it's been quite a while since I heard anyone suggest that a person of color must surely be disappointed when his or her child turns out to be darker. Most people nowadays would understand that this is a prejudiced and mistaken assumption that shows disrespect for both the parent and the child; however, it seems that very few people realize the offensiveness of making similar statements about parents of autistic children.

Granted, there are some autistic kids who did not inherit their autistic traits from a parent; but familial inheritance accounts for a significant percentage of the autistic population. (I suspect that the actual percentage is considerably higher than the genetic studies indicate, as it's likely that many multigenerational autistic families are choosing not to take part in genetic studies because of the possibility that the research could be used for eugenic purposes.)

I don't mean to suggest that pity is ever desirable, because it's not; pity always objectifies and dehumanizes those who are on the receiving end of it. Still, it strikes me as particularly obnoxious when our society is so ignorant—and so intolerant of diversity—that many parents who are autistic themselves, or close to it, are being told that their lives "must be so hard" because their children are like them.

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  • I've had a weird experience a couple of times when talking to random people at autism conferences. I might say something about my ASD kid and they'll ask, "How old is your child?" And I'd say 25 (or whatever was my kid's age at the time). And the response I got was like, "Oh WOW! You're one of those who had to raise your autistic child in the DARK AGES! Before FEAT and before DAN! and before PECS... wow, that must have been haaard."

    Kids like mine (PDD,nos) weren't diagnosed as being on the spectrum back then. They were called "learning disabled" or something else, unless someone decided they were close enough to the then current autism category to put them in the autistic disorder category.

    My kid got special attention from me (early intervention... I taught the kid to read simple sentences before xe was 4 years old) and my kid was in "special ed" and mainstreamed throughout school. What we got was adequate, really OK, except they didn't know what to do with mainstreaming my kid in junior high... We got a little speech therapy and PT and OT. We did OK, thank you very much. I might have panicked if I had had a different agenda for my kids, if I had thought they needed to be future CEOs or engineers or something. Both of my kids did ok. They did better than OK in the area of honesty, morals and ethics and being kind to people, etc. which was my real focus.

    By Blogger Camille, at 5:34 PM  

  • When a friend of mine was having her son diagnosed, she said something to the effect that "it's OK. If Andrew is a garbage collector, it's OK." I told her that even without the autism he might be content to be a garbage collector and that you can't judge anyone at age 3 what their future holds.

    On another point, having boys with autism have happened to help me discover myself. I learned what makes me tick and why I do the things I do. Yes, I do think autism is inherited. Perhaps there are environmental factors making things worse, but I think genetics plays a large part in it all.

    By Blogger Sharon, at 6:11 PM  

  • oh Sharon, you make the memories come back /grin.

    When I was 4 I was absolutely fascinated by the garbage truck. All the moving parts and the 'Maw' eating up all that stuff!!!


    PS: Maybe I would be happier doing that now, but I'm ok with being a computer specialist, there's just too much production pressure.

    By Anonymous Anonymous, at 6:46 PM  

  • Yeah, my dad is undx'd on the spectrum and I'm official and we wouldn't take part in a genetic study (which believe me is saying a lot, considering how much autism and genetics fascinate me).

    When I was younger, every morning when the garbage truck came by I would run around the apartment in excitement, mimicking the truck's noises and saying "garbage truck".

    Also, something to note about predicting an autistic child's future career - at age 18 I am more significantly disabled by virtue of being autistic than my dad is (I don't think he's disabled at all), and yet he works a minimum-wage job and I'm on my way to being a physicist. So given that level of disability doesn't necessarily tell you about a kid's job or earning potential, it would be much harder to make such a call when the child is a toddler. Best to do what my parents did and just wait and see, encourage us kids to do our best but not by making it seem like success or happiness should be defined by if you go to college or how much money you make. (And that's a lesson many NTs would be good to have - some people just aren't meant for college or high-paying jobs, and there's no reason not to be happy with that as long as you've got a roof over your head and can feed yourself fine.

    By Blogger geosaru, at 7:01 PM  

  • Hard? Not at all. It is a joy. A gift from god. Every day.

    And BTW, I wish I made as much as the garbage collector does.


    By Anonymous Anonymous, at 7:30 PM  

  • Well, especially is you collect garbage/are a sanitation engineer in New Jersey.....I've actually that this would be a job for Charlie. Lots of physical activity---he already takes it out for us----he seems pretty tolerant of being out in cold and heat.

    When the reporter asked me that question, I knew I had to jump right in and make it clear. I added something about how Charlie has, too, helped me to "discover myself"---I gestured to the building around me (it was being filmed in my office, which is in an old house) and said that if we hadn't come back to New Jersey for Charlie, I would not have this job that I like so much, wouldn't have this good life.

    By Blogger kristina, at 10:03 PM  

  • I wanted to be a "garbage lady" from age 4 to about 6 or 7. Not sure what I was thinking now, after picking up after 2 wee ones and my husband. ;)

    I do agree, ABFH, about the inheritance of ASD. If I look at my family tree (and my husband's), you see flashes of ASD "traits." I have a cousin who would surely be dx with autism today, a nephew on the spectrum, and so on. I see that my husband and I came together (with all our "aspie traits") and produced two magnificent children. One who is labeled gifted (and as I recently posted, a lighter shade of violet, just off the spectrum!), the other labeled autistic. Both artistic, funny, and the two greatest gifts.

    I appreciate both my kids, for all their quirks & uniqueness. It gets, shall we say, interesting around here. ;) My husband & I always say how boring other people's lives must be...with their very "typical" children. :)

    I hate the looks of pity. It's always so damn awkward. People have no clue...they see "Autism Everyday" playing over and over in their minds. Our lives must be hell, 24-7, we have no future. I've had to assure people it was okay, that our life was good, that I am blessed. Oh yeah, that REALLY confuses the heck out of them!

    By Blogger S.L., at 12:15 AM  

  • I had a book called Someday Angeline as a youngster. One of the main plot points was the fact that the book's protagonist (who strikes me now as decidedly "spectrumy" now that I think about it) wanted to be a garbage collector (like her father) but people kept telling her she was "too smart", even while some derided her for being "immature" and naive.

    Sort of off-topic, I guess, but the comment thread discussion about garbage collection sparked the memory of this particular book.

    By Blogger AnneC, at 1:02 AM  

  • I had and still have my copy of that book. It's what I thought of reading comments here too. The author had come to my school as a kid.

    As for multigenerational families, that's why mine is not participating in genetic research: We have no desire for our genes to be used to eliminate people like us.

    By Anonymous Amanda, at 3:46 AM  

  • I'm sure they would love to see the generations of our family in research too, but I don't think it's likely to ever happen.

    I found garbage trucks interesting but never wanted to work on them. I always wanted to be an interpreter (though for a while I wanted to be a doctor or an illustrator), and now I'm a translator. I have a hard time working even in a small and very friendly and accomodating translation company.

    By Anonymous Norah, at 5:00 AM  

  • You should all check for the APO-E4 protein to see if your "genetic" autism is due an inability to get rid of mercury. Then you could cure yourselves and stop celebrating having mercury induced brain damage.

    By Anonymous Anonymous, at 7:51 AM  

  • Hey Foresam, you should embrace your inner autistic and admit that you want to perseverate on other things besides mercury. It's OK if you want to drive a garbage truck, John. Really.

    By Blogger abfh, at 10:46 AM  

  • I think raising children, period, must be "so hard." I don't know why raising an autistic child would be any harder than raising any other child. My sister is raising a karate star-- that's hard, especially dealing with her after she broke her arm skiing and couldn't practice for three weeks, which made her very irritable. A seven year old fussing over how her reaction time to punches is going to be lowered by three weeks of missing her workouts is hard to handle.

    A friend of mine is raising two little girls as a single dad after their mother died of cancer. They are acting out in school and at home from their grief. That's hard.

    A woman I know has three adult children from 18 to 22, all still living at home for one reason or another, and showing no signs of becoming gainfully-enough employed to move on, or going to college. All are bright kids, all are good citizens and hard workers, but none seem interested in becoming self-supporting. That's hard.

    Parenting is hard, period, and I think parents of neurotypical children would be very surprised if they could walk a few miles in the shoes of a parent of an autistic child, in that there are struggles, different struggles, but not MORE struggles than parenting any other child brings.

    By Blogger Veralidaine, at 1:36 PM  

  • Agreeing w/ Veralidaine.

    The key is: being a good parent is hard. It is a huge responsibility and if the job is done right, IMO, it comes with many chalenges.

    I have seen the looks of pity -- I have had people say "oh I'm sorry" when I tell them Pete's dx. I just smile and tell them not to be sorry -- I adore my son and our life is really good.

    By Anonymous Anonymous, at 10:42 AM  

  • "I suspect that the actual percentage is considerably higher than the genetic studies indicate, as it's likely that many multigenerational autistic families are choosing not to take part in genetic studies because of the possibility that the research could be used for eugenic purposes."

    And also because many autistic parents of autistic kids weren't diagnosed as autistic, because the diagnostic criteria of autism have changed and broadened so much. In the UK, Asperger's only started to be a commonly used diagnosis under 20 years ago, and before that, those with cognitive profiles roughly similar to mine would probably have got diagnosed with bipolar, schizophrenia, avoidant personality disorder, or not diagnosed at all. Even stuff i read as a kid about autism (and i'm only 26) made me think that i couldn't possibly be autistic, because i had a high iQ score annd could speak.

    My dad has some distinctly Aspie traits, and i'm certain my mum is dyspraxic, although neither of them has any kind of diagnosis. I reckon i basically inherited the neurodiverse traits from both of them, but "multiplied" rather than simply added, and thus intensified (possibly also amplified by my difficult forceps birth).

    I've also noticed examples throughout history and literature of families with numerous "odd" members sharing neurodiversity-like traits (the Fawley family in Hardy's Jude The Obscure springs to mind). People have been noticing inheritance of neurological difference for millennia...

    By Blogger shiva, at 6:39 PM  

  • I must admit parenting is hard. Its not horrible though. It takes a tole emotionally since I am so sensitive to worry about everything. I get tired real easy. But I dont see how that is any different than any other parent really. I prayed for my children and god gave me to gifts to cherish. I do the best that I can but I admit its tough at times. As far as what others say. I get those that ignore and pretend we arent there. We got those that are really nice and understanding. There are those that act like its contagious. Then those that do not have a clue but speak to me like they know it all. I give them kuddos for trying but if your going talk know exactly what your talking about. And on the topic of garbage man. From the time my children were young my mom would call the garbage man Joe. So at that point my kids are in awe that my mom knows the garbage man. She of course made this up for entertainment purposes. But that is so cool to them lol.

    By Anonymous Anonymous, at 6:56 PM  

  • I have often gotten the pity response too. I think many people feel they need to say something and they are just not sure what they should say about it. Ironically enough, I have gotten it from parents of children who I was pretty sure were on the spectrum but were not diagnosed. Try to keep a straight face on that one!

    I also have found that parents of newly diagnosed children are still in shock/denial and they probably respond to the pity response. So then people assume that we want their pity. I am so matter-of-fact about it that I find people quickly become very comfortable talking to me about my son's challenges as well as his wonderful qualities.

    And I agree with what others have said, parenting is just a challenging job. There are many days when my 7 year old autistic son is much easier to deal with than my 11 year old "typical" daughter.

    By Anonymous Anne, at 11:25 PM  

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