Pet Peeve #27

What I'm about to say is probably going to seem horrible to some, outrageous to others, but that's okay with me.

I am sick of hearing about "autism this" and "autism that" and how terrible autism is and how it is such a devastating illness with no cause and no cure and blah, blah, blah... Yeah, I get it. People with autism lead a spectacularly different life. But let's get something straight. I would trade my son's diagnoses for autism any day. It would take me about a millisecond to make that particular decision. Oddly enough, I think a lot of parents of autistics don't want pity; it's the autism fundraisers proclaiming what a blight this illness is upon the lives of beautiful children that get me.

Before you jump on the mommyblogger "she's bashing autism" bandwagon, take a minute to listen. I have no problem with the idea that living with autism is uncomfortable, strange, and confusing. But until your autistic son is specifically NOT invited to a family reunion because of his autism, don't cry to me about how devastating this autism thing is. Until you've actually contemplated the legality of future mandatory sterilization for your 12-year-old because the thought of him procreating scares the hell out of you, don't whine about how watching your autistic child struggle with making friends makes you want to cry. Until your autistic child cuts himself to see how it would feel, or tries to jump out his second-story bedroom window in a delusional manic rage, I don't want to hear about how terribly frightening autism statistics are. Autism, my friends, is like Bipolar Lite. All the quirky character flaws, none of the terrifying mood fluctuations. Count your autistic blessings. Count them one by one.

Social awkwardness? On the Bipolar menu, you get that plus a side order of frontal lobe impairment, which causes my child to actually act out or loudly voice his inappropriate thoughts.

Lack of or delay in spoken language? If your other option was a barrage of hate-filled vitriol possibly lasting for hours, then a tsunami of sorrow washing through, choking every word with despair and self-loathing, would you take that instead?

Little or no eye contact? I'd wet myself with relief if my child couldn't look me in the eyes when he tells me things I know for certain are not true, because it would mean he knew they weren't true, too. As it is, he is truly convinced of his own brand of reality, and it almost never matches the reality of the people around him. And he'll look you in the eye and tell you all of it, because it is his reality as his brain has processed it.

So, while I understand the discomfort and confusion surrounding parents of kids with autism, I don't feel sorry for them. Maybe I'm too busy feeling sorry for myself some days.

Comments

[zip]

You state at the beginning that it's the autism fundraisers that get you. But then, you go on with something that sounds like "autism isn't that bad, there's much worse". I agree with the second part of the sentence: yes, there is much worse, and I'm sorry that you have to deal with it day and night. But I don't agree with the first part. The fact that something worse exists doesn't make everything else negligeable. Saying "it could have been worse" doesn't make everything better. So, please do rant against fundraisers who are all looking in the wrong direction and concentrating on something that doesn't need to be concentrated on that bad. But please don't dismiss other people's troubles because they aren't as bad as yours. Autism can be much more disruptive than the examples you give.

[Lori V.]

Hi, zip! Thanks for pointing out what seems to be an inconsistency. However, both (a) and (b) are irritating to me independently and because of one another.

I think a lot of the fundraisers for autism out there today are out there simply because it is de rigeur right now, because it is the "pet disorder du jour."

Also, I'm sure that there are more unusual, disruptive examples; I'm just going off the Autism Society of America's website for symptoms of autism. I haven't read the entire site to look for deeper hidden fine print; I'm sure someone out there will be offended enough to do that for me, though! :-)

[Blue Like the Sky]

Let me take a crack at this one.

What offends me about the autism field day we seem to be having right now is the odd blend of - depending on how you look at it - celebrities using their position to elevate awareness and celebrities using their children's misfortune to generate publicity. I can't help but think there's a little of both.

Autism just isn't scary or threatening in the same ways that major mental illness is. People don't think of autistic children as "crazy." They feel understanding, sympathy, compassion. They see poster children. Maybe Bill Gates has Aspberger's (sp?)??? What about Temple Grandin? The concept of a "spectrum" is comfy.

Most folks have never seen a bipolar adolescent go from zero to enraged in two seconds (we were having dinner at some friends' house several years ago when Small Child was a baby when their daughter, a girl we'd know since she was two and who at that time was about to go off to college, misunderstood something and nearly overturned the dinner table in rage. She weighed 98 lbs.). It's not pretty, and you don't forget it.

These kinds of stories don't usually end in warm, fuzzy ways that make good People magazine covers.
You can't fix them with fad diets. Or structured schooling. Or physical therapy. You often can't fix them with the world's best medicine, either.

Bipolar Disease just doesn't lend itself to dressing up in a ballgown and eating fancy food and dancing all night. But maybe it should.

I thank the universe every day it doesn't live in my home, and I send healing thought every day to yours.

[ali]

Autism is a lot more than what you are talking about. There is a spectrum and there are some high functioning people on the spectrum. But there are also people with autism who will never speak, or be able to care for themselves, etc. There's no medication that they can take, therapy is difficult especially when the child is non verbal and can barely express a yes or a no.

Autism is sort of the disease of the day that's true and other diseases aren't getting their fair share.

And before you think I'm someone who doesn't understand, I have bipolar disorder. I've had it my whole life and it didn't get diagnosised until I was in my late twenties (I'm in my mid 30s now I was diagnosised when I was in the hospital after attempting to take my life). While I haven't been as severe as your son is, I will say my mother has worked first hand with autistic children in the whole range of the spectrum and she knows it first had experience.

I will tell you this. I would never, not in a million years, trade my bipolar disorder for autism and I know my mother would never want me to have autism. Even with the childhood I had.

I hope and pray that your son can get to the place that I am and that medication and therapy work for him.

[Lori V.]

Hi, Ali, thanks for visiting! Yes, I agree there are some extremely severe cases of autism which are every bit as devastating as my son's bipolar. I guess I didn't make clear enough that it's the whole "disease du jour" mentality that irks me. It's THE cause to back right now. The number of activists seems to be rising exponentially in relation to the newer, mild cases of autism being diagnosed; where were these activists when autism was *actually* mostly the difficult cases, the ones you've spoken about? It just seems to be a bandwagon, and I'm too busy patching my son together with atypical antipsychotics to really jump on. My friend Blue up there (hi, Blue!) expressed it ever-so-eloquently, as per usual. :-)

On a happier note, I'm glad you are at a more stable place right now. It always gives me hope for Youngest to see an adult who is stable.

[Blue Like the Sky]

Thanks, LV!.

And, you're right, Ali. Autism can be devastating. In the interest of full disclosure, I should also mention another family with whom we are friends. Their son, now approaching 20, is on the "autism spectrum" at a point that, while not as shut down as you describe, is harrowing to behold at times. It was one thing to control a 9 year old who would shut down - or totally freak out - when sensory stimuli became overwhelming in a public place. But what happens when that 9 year boy has grown into a 6 ft.3 in. 210 lb. man? What happens when he flaps his arms? Covers his ears and cowers and howls?

The People Magazine stories of pretty blond boys in their mother's arms don't always tell the whole story, and I think that's one thing we can ALL agree on.

A giant cheer to your mom, Ali, who is doing unsung and important work. And an even bigger one to you. Your perspective is one to honor and celebrate.

[RedMolly]

Lori, I'm so sorry. I really don't have anything substantive to contribute, but I understand what you're talking about, and I can only hope that by some miracle things will get easier for you soon.

[Sarah]

It sounds like you and your child are really struggling. This is hard, but there are a lot of people struggling with various illnesses or diagnoses and it's really upsetting for me to hear such a dismissal of their situations. I work at a school for kids with behavioral problems and I see kids on the spectrum and with bipolar. Neither of them are easy.

Please consider the feelings of those who read this. I don't even have children, but I care deeply about those I work with and this really upset me. I can't imagine how it would make a mother feel.