Anyone who's been reading this blog knows that my son, TH, has been diagnosed with Asperger's. The way his autism has manifested has changed over the years, starting with a classic presentation of meltdowns, absent pragmatic language, obsessions over "abnormal" objects and subjects, flapping, lining up toys, and so on. I've chronicled his experiences here for several years, covering his days from public school kindergarten to being a fifth-grade homeschooler.
TH can talk. Sometimes, he makes a lot of sense and has insights that surprise us. Sometimes, he makes no sense at all. It varies from day to day. It varies from hour to hour. But he's verbal, and what I quote from him here comes minus his interjections and non-sequiturs, his loud, unmodulated voice, his grimaces, his flapping, his Eeeeeees. Those features I just described become more prominent in situations of excitement, novelty, anxiety, and fear, and lately, he's seemed to have more and more difficulty controlling them when we ask, as we do in restaurants and other public places. One reason we think this up-tick is happening is the onset of adolescence.
My son is a smart, autistic person. He does not appear to have a broad-spectrum intellectual disability, although he has some clear learning disabilities that we accommodate in many ways in our homeschooling. He's insightful enough about his autism to be able to articulate--with some quote-smoothing from his mother--exactly how he views autism and his expression of it.
But he's not intellectually brilliant. He has no savant skills. He's got some preternatural naturalist abilities, but that's related to his fine visual perception and discrimination and his early fixations--imprinting?--on the natural world.
The bottom line is, our son is an autistic person who is not intellectually disabled. He's learning disabled. Socially disabled. Communicatively disabled. But as far as cognitive abilities go, he's fine. Does that make him somehow not autistic enough? Why do I always see this question rising like a challenge from comments like the one below?
The movie review I mentioned above quotes Grillo as saying, "There are now 800,000 Americans with autism...most people on the spectrum of autism are NOT intellectually gifted Asperger-types. They will never function independently, requiring 24/7 care for the rest of their lives." (I corrected a few things in the quote).
Later, Grillo is quoted as saying, "In Fly Away, I chose to dramatize severe autism, unflinchingly and without sentimentality."
Reading these two quotes and seeing autism described in the review as an "illness," I had a reaction. My first reaction was to ask, Is it true that most people on the autism spectrum will require 24/7 care as adults? That's a serious question, and if anyone has data on that, I'd appreciate the information.
After the data-seeker in me was finished critiquing, my personal queries surfaced. In that quote, Grillo seemed to be linking "Aspergers-types" (what is that?) with intellectual giftedness. That's a stereotype that doesn't even fit the current DSM-IV description of Asperger's, and from what I've read, most people with Asperger's are of average intelligence. Not to hammer on Grillo personally, as she's by no means alone in bringing it up, I'm sick of that "gifted" stereotype; its effect is to both dismiss people with Asperger's as simply suffering from an overabundance of awkward brilliance and to dismiss them as not having "real" autism. The upcoming DSM-V would beg to disagree, rolling all spectrum diagnoses into one, under a single autism umbrella.
That decision makes sense to me. Autism is not a measure of intellectual ability. It's a communication disorder that can occur with or without intellectual disability and with or without intellectual giftedness. Not every autistic person is a savant, not every Aspie is brilliant, not every intensely autistic person will require 24/7 care for the rest of their lives. The one thing that they do have in common is that they all have a communication disorder called autism. Some may call it a difference. Some may called it a disorder. But I can't see it as a disease or an illness, both of which describe poor or bad health. My son is one of the healthiest people I know. Am I quibbling? I don't know. Is Down Syndrome considered an illness or a disease? What about Williams Syndrome, or Fragile X?
At any rate, my healthy autistic son is now becoming more aware of many things, one of which is this blog and the things that I write about him. He's a great child, but I can already see some things coming up, things that I'd love to blog about for insight from the autism community, things related to the confusion of puberty interacting with some of his autism-related differences. We're working very hard around here, but I can't provide many specifics, and as his issues emerge or if they continue to emerge, any crowdsourcing of insight or support will occur more and more behind the social scenes. Let's just say we've had a few instances, and I can clearly see the autism confusing what will already be a confusing time.
When it comes to adolescence, no one can say what will happen, whether there's autism or not. I know parents whose neurotypical adolescent children have proved to be raging, hormonal nightmares. I know parents of autistic teens whose experience with their adolescents was relatively harmonious, but I also know autism parents who, with their autistic teens, had an unpredictable, horrorshow existence, parents who have made the wrenching decision depicted in the film of having to place their child in a residential facility. Read to the end, and you'll see why I think a movie like this may help exactly such parents...and how Grillo and I agree precisely on this point.
But one more graf o'complaining. Watch Grillo's previous outing as an executive producer on Autism: The Musical, and you'll see even among that small group of autistic children a variety of personalities and behaviors. Not all autistic children or adolescents or adults rage. Not all people with intense autism are intellectually disabled. While I appreciate Grillo's film as I've seen it described and her goal of showing unflinching reality, I'm concerned that her comments about the film, as given in this review, will close minds that may have been opening to some of the unexplored possibilities of what's happening in the minds of autistic people.
My reaction to Grillo's comment was chaotic. I have now hurled up this long, possibly equally chaotic blog post as catharsis. It doesn't help my attitude or my perspective that Grillo blames vaccines for her son's autism. The thing is, though, she's a woman with a plan. Yes, that plan is to donate some proceeds to Autism Speaks, which she joined as a board member back when it was Cure Autism Now. But her reasons for having made Fly Away go beyond what the review quoted. She's sketched them out here. While I have a minor concern that such films will reinforce autism stereotypes, I hope right along with Grillo that for autism parents who have these toughest of choices to make, Fly Away will show them they're not alone. For them, that stereotype is reality.
In journalism, you're not supposed to cherry-pick quotes to drive truth in one direction or another, but here's a quote from Grillo, commenting on her film, that I choose for my lowly blog:
I’ve also watched parents unable to place their children in full-time therapeutic residences, when it was clearly needed. While such placement is not best for all or even most children on the spectrum, it’s tragic when parents are too plagued with fear and guilt to make the choice when it is. If Fly Away eases the pain of even one parent’s torturous decision, or if it expands the heart of even one person untouched by Autism to accept our children and appreciate our struggles, it will have been well worth making.
As with so many things in the autism community, while I've expended hundreds of words here rambling on about where I disagree with someone else, these few words on which we agree are the ones that matter.
7 comments:
Hi. I'm Lydia. I'm 23. I blog over at Autistic Speaks (www.autisticspeaks.wordpress.com). I'm not a super-HF-Aspie-type, and I'm not "locked away in my own world forevermore," either. I'm somewhere in the middle of the spectrum.
When I tell people I have autism, which is rare, but nonethelessd does happen... I get two common responses.
1. "YOU can't be autistic, you're so smart!" or "But you talk" (sometimes, mind you, not always)
or 2. So what's your special talent?
Now, I have an IQ that hits test ceilings... but you would never know it. I'm partially verbal, make no eye contact, flap, toe walk, hit my head, bite, melt down with the best of them... you get the idea.
There are so many misrepresentations of what ASD is and isn't out there, and it's maddening. All we can do is share our own stories, and hope someone's there to read them.
To reply to the "isn't autistic enough" my reply would be "yes". I have a son who's nearly 12. One that was dx'd at 2.5 with mild non-verbal PDD. Who learned to speak btwn the ages of 3 and 8. Who's had social skills and behavioural expections drilled into him since he started slamming his head off of things at 18mths and finally around the age of 8 we got under control with the help of using Risperdal - which rebounded and he's been off of meds since 8.5yrs. He has short term auditory and visual recall issues, yet is hyperlexic so we've worked hard at reading and listening to deal with these issues. He has a full social, behavioural and communication plan under Ont PPM 140 (ABA for schools) and he's learned everything from working in groups to playground survival. He has a fusion at school and they've put in for a laptop. He has severe claustrophobia and with the OT there is a plan in place so it doesn't give him issues in class.
I have a LOT of difficulty with "Aspie" level parents who don't push. This child has been in swimming lessons, karate, goes to Scouts, he goes camping over the weekends and like the rest makes his own food over the fire. He's been taught, taught, taught, retaught... I had the neighbour who's known us for ever say to me "I thought you only had one with autism" (his severe ASD younger bro) and to me that's a HUGE compliment.
Behaviour in restaurants, behaviour in outings isn't allowed for either of them.
We had to go and get meds so he could cross TO to Jamboree next weekend and to ROM in TO in the middle of the month. Traffic jams + claustrophobia = panic attack.
We take his autism seriously. His current dx would be mild NLD but the school system doesn't recognize it as an "exceptionality" so the words "autism" remain. He passes for normal and he's off this summer for a week of social skills camp to fine tune some of those skills he still has trouble with. BUT, he's going to be an INDEPENDANT adult. He's getting A's and B's in school. He has no savant skills but he will be INDEPENDANT and make his own way in the world.
IMO, anyone else on the upper end of the spectrum that doesn't have severe ID handicaps, that can learn.... can do the same....
Autism is a disability and needs to be overcome. The reality is, that most people with autism are disabled and the ability to know if they are ID or not cannot be determined due to the severity of their ability to communicate. It is necessary to write films about the realities of many with autism. Those of use on the severe end of the spectrum get tired of the "feel good" Aspie versions after a while. Although my youngest is low behavioual... most aren't. My youngest will never live alone but compared to others with his dx... they tell me his ability to read/write etc shouldn't be possible... I refuse to believe the words "impossible" and "can't" exist for either of them.
BUT, in the end... you and I have to live with the choices we make and IMO... the upper end of the spectrum isn't "autistic enough".
What a wonderfully powerful piece, Emily. And thank you for the links; I will be looking for the movie to learn, learn, learn and learn some more.
As you say...at least it gets people thinking and talking and realizing.
@Lydia...Thanks so much for reading and posting. It's insight from adults with autism that interests me most because someday, the Fates allowing, my son will be one. It's not that I think all autistic adults are the same, but I want to hear from people and about their experiences.
@FW2...thanks, as always, for posting. We don't cut our children--any of them--any quarter. We have very high expectations for them. Indeed, I think that my very high expectations for my son are a contributing factor to how well he's doing. His behavior in restaurants has simply become more difficult for him to control lately. We constantly receive compliments on how well behaved all of our children are when we're in restaurants. In fact, we received such approval yesterday when we were out eating breakfast.
As to whether or not he fits your "autistic enough" criteria...the actual diagnostic criteria, either DSM-IV or DSM-V, disagree with you, so I'll have to go with that. By your description of your own son who is doing so well, he doesn't sound autistic enough based on your own criteria.
@Royal...thanks. I'm looking forward to the movie, too, although I'm not looking forward to how emotional I will feel on behalf of many friends of mine. That, and, as my son's elementary school counselor pointed out in considering complaints parents were making about my son's "getting to have" therapies, etc., at school, we're all just one traumatic head injury away from being best friends with someone like her who will advocate for our children and their needs into adulthood. Autism isn't the only thing that can lead someone to an adult life requiring 24-7 care.
So glad you have (mostly) survived the big move. Especially glad to "hear" your voice again online.
Thanks for this post. As one whose child falls somewhere between the two extremes, it's a difficult prospect to face the possibility of a future in which my son may *not* be able to care for himself. For now, though, we continue to treat him as though he will and to have high expectations based on where he is *today*. It's all we can do.
@niksmom I think it's important never to rely on expectation of limitations. I have a friend whose son has Williams Syndrome. Although in the past, I think the perception was that Williams kids would require residential facilities as adults, not attend college, etc. This family has rejected all of that and fully expects their son to attend college. While he did stay back a year for an early grade, he is currently on target with his academics, reading, writing, etc. He has many skills that I think might have gone unnoticed had his parents not had these expectations of him.
While TH will likely be able to take care of himself in a sort of general sense (minus backwards, inside-out clothing, etc.), our concern is that without some guidance, a certain naivete and lack of social insight may lead him into difficult or even dangerous situations, as will a certa lack of self-care and time-management skills. We'll see. It's just going to take some work.
Thanks for this great post.
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