The title of this post is a sort of summary of TH's take-home information from an episode at school. He has another child in his class with autism whose autism is, as TH puts it, "worse" than our son's. This child's mother, Ms. Grossmund, came to class to talk to them about her child's autism, a sort of circle of friends minus the circle of friends, parent letter, or, as it seems to turn out, accurate information.
When I picked TH up from school Friday, I got this sense that something was on his mind. He denied having anything in particular to talk about, but I IM'd his dad that I felt there was something going on. That night, at about 10 o' clock, TH came downstairs. He does this often in the late evening...sometimes, it's just to make a final connection with me, sometimes it's to take me into our home office so he can tell me something that to him is very personal, and sometimes, it's confessional to both Mr. DMFP and me. This night, it was this last.
He sat down, paused for a bit while I hugged him, and then blurted out, "Ms. Grossmund came to our class today to talk about (her son) and to tell us that he is autistic." Mr. DMFP and I locked eyes over TH's head. He went on to tell us that she had talked about her son in specifics about how he communicates and so on, and I asked, "Did you say anything?"
And TH said, "I raised my hand and then said, 'I have autism, too.'"
I've thought about this a lot since Friday night. Maybe it's misplaced. Maybe it's too soon. But I felt a flood of maternal pride and respect for my son, for his courage and for his capacity for self acceptance. First, he had the courage to raise his hand in front of a total stranger and his entire class. That's a big deal. And then, he manifested total acceptance of who he is, openly, without shame or embarrassment. This is a child who still has to take 15 minutes to get used to his grandmother's entering the house.
The story gets garbled from here. At some point, another child in TH's class--actually, his best friend--raised his hand and asked, "Is there a cure for autism?" TH, who still has no real concept of time or linear ordering of events, cannot tell us whether this occurred before or after he told the parent he has autism. But he was fully able to tell us what she had to say: Autism can be cured. Some people get "better" and will actually become like "normal" people.
I've never seen Mr. DMFP so pissed off, in his way, about something. We both explained to TH that what he has--which is Asperger's syndrome--is not a disease. It's not something that requires a cure. It's not something that we've ever thought needs to be cured. That there is no such thing as normal. Everyone carries with them things that are difficult, things that they have to work on, to try to improve. His suite of difficulties simply has a name: Asperger's. That doesn't make it a disease. He's just like everyone else in that some things are hard for him, and he has to work harder on those things.
Finally, I also told him that (a) we think he's incredible just the way he is and have never thought he needed to be "cured" from anything, and (b) people with autism don't get "cured." Like everyone else, as they develop and mature, they may improve or overcome some of the difficulties that come with autism. Not all, maybe, but some. But the things that make them autistic--the great things, the neutral things, the difficult things--don't all just "go away" any more than someone's tendency to anxiety or depression or manic behavior or impulsiveness or creativity or math genius or good comedic timing just "goes away."
Mr. DMFP and I talked a lot about this over the weekend. He worried that TH came out of that classroom experience with the impression that his Asperger's is something that people view as a disease, something that needs to be cured, or something that he should hope will just "go away" someday so he can be "normal." So, I asked him, "Did that make you feel bad? Do you feel like you need to be cured from your autism?"
And he said, "No," and expressed to me, in his way, that he's genuinely comfortable with who he is.
I believe that someday soon, TH will probably begin to have an even greater awareness of some of the disputes that take place in the world of autism. Diets. Cures. Chelation. Disease. Way of being. Acceptance. Rejection. Right now, he's eight years old. Right now, he's in third grade. Yet, already he's showing a maturity beyond his years, one that bodes well for what I've stated here before is my goal for my children: that they achieve true happiness by understanding and accepting themselves. Part of that will likely involve encountering and maybe even confronting misconceptions and misinformation about who they are. I simply hadn't guessed that the process would start so early.
15 comments:
My son also has Aspergers. We also tell him it's not curable, but it is treatable. Just like if you have poor eyesight, you wear glasses to help, there are things we can do to help the Aspergers.
In fact, when he made huge gains on the GF diet he was worried his Asp would go away because he knows there are parts of it that people enjoy and he didn't want that to happen.
TH strongly resists giving up his fisted grasp of writing implements because he says it's one of the things that makes him "unique."
I happen to be one of those that hopes the Aspies, NLD's and the HFA's that don't require supports are removed from the Autism spectrum b/c IMO they do not have Autism. If they did they would be dx'd like my youngest with Autistic Disorder. My eldest nearly 10yr old son has NLD... So I didn't want you to think I didn't see both sides.
My eldest son will lose the "autism" dx in Gr 8. Currently the paperwork reads "a mild form of ASD" b/c without the word autism in the dx we would lose the OT/social and behavioural programming under Ontario PPM 140. We were offered a re-dx last fall at the beginning of Gr 4 after the psychometric testing was completed and it came back "normal" with a twist. We've been working on the "twist".
I don't believe autism is a cutsie club. Anyone who functions "normally" IMO those that do not require outside services - meds or social services (speech, OT, PPM 140, disability funding) - does not have "autism" and claiming to speak for those that require those things is wrong.
My eldest son will be as "normal" as the next person, and passes for "normal" now. Our biggest issues are the anxiety and hyperactivity which it appears, we're going to have to put him back on meds for sooner rather than later. We also have some language issues but they are covered under the IEP as well.
He will never be told he has "autism". He will not be able to use it as an excuse, and for refusing to take responsibility for himself and his actions. Actually a year ago I was talking to my Mother and he over heard us. We were discussing his younger bro and he told me "I am not like R, I do not have autism".
My reply "no you do not".
Yes, recovery is possible, that child has gone from non-verbal at 3, echolalia at 4, 3 word sentences at 5, to a B average (A in French, C's in English) in Gr 4... IMO that means living as an independant adult just like the rest of those that are "normal" which as we all know is only a setting on the dryer.
My son's "official" diagnosis is autism disorder, as per the developmental pediatrician who diagnosed him. He falls into "Asperger's" because his language development was "normal," although we know in retrospect that his verbalizations weren't used in the typical ways, at all; they were echolalia, non-pragmatic. My son has OT and speech support, an aide in the classroom, and supports throughout the day. I guess that means that he has autism, based on your definition. He never gets to use it as an excuse; it is instead a way for him to understand that with some things, he's got to work harder. He's lucky because his autism overlies very high-order cognitive abilities. Not every person with autism has this combination. That doesn't mean, however, that my son doesn't have autism. He just happens to be an extraordinarily intelligent boy who also is autistic.
I've never viewed autism as a club, cutesy or otherwise. It's a neural construct.
A progression through age of going from nonverbal to echolalia to sentences is not cure...it's developmental progression. I am glad that children show these progressions, and most do.
"That there is no such thing as normal. Everyone carries with them things that are difficult, things that they have to work on, to try to improve. His suite of difficulties simply has a name: Asperger's."
I love this, I'm going to steal it for dicussions with my son! My G is 6 and just started 2nd grade today. He has an educational diagnosis of autism with a 'high/probable' score on an evaluation for aspergers and is very smart but requires a fair amount of speech/ot/accomodations/interventions to get through his day. We've been collecting information and anticipating a formal talk with him about aspergers sometime this year. I wanted to wait until after school started since he already realizes he's different and I didn't want to increase his first day anxiety by giving it a name.
We've recently met a couple other families in our town whose kids are on the spectrum, and I'm trying hard to stick with a live-and-let-live attitude. My views are very aligned with yours, theirs are very aligned with the mom in TH's class. It would be very hard for me if one of the other parents taught the kids in G's class an unscientific perspective of autism.
Thanks for commenting...in fact, thanks to all for comments.
I guess I don't mind so much the unscientific part (well, I do, but not as much) as I do the part where TH came away with this concept that autism (*his* autism) was something that required a "cure" for him to be "normal." Man, but was Mr. DMFP ticked about that.
We've always been very open with TH about his difference. I think--I hope?--that our openness may be one reason he seems right now to be fairly comfortable about it, although I think that ebbs and flows.
I cannot add much to what has already been said. But hugs to you!
This my-son-has-real-autism-and-yours-doesn't stuff (as posted by farmwife) always depresses me. I mean, someone with Hodgkin's lymphoma has cancer and so does someone with pancreatic cancer. Hodgkin's has something like a 95% survival rate (i.e., it's "milder") while 95% of people with pancreatic cancer die (i.e., it's "worse"). Still, both patients have the same class of disease. That's not, of course, to compare autism to cancer, only to point out that everybody with a certain general diagnosis isn't exactly the same, and they are all "worthy" of the medical diagnosis they receive.
Perhaps the DSM-IV will clear some of this stuff up, but I've heard they may get rid of PDD-NOS and AS altogether and just use autism to describe all these kids. Perhaps designate "severity" with a number or something along those lines.
Also, Nonverbal Learning Disorder is not in the DSM and is not part of the autism spectrum.
Wow, I'm about to participate in a Circle of Friends type of group in my area, and your story is a big eye opener. Not all parents agree on how to explain autism to the public. We have to be very careful with how to present the issue in classrooms not only to avoid misinformation but also to make sure we respect and take into consideration the autistic child that is watching the presentation next to his/her neurotypical classmates. I'll share this post with my local group.
Thanks, SeaThreePeeO. Louise...yes, it will be interesting to see what the next version of DSM does say. One thing's a given...it will be steps behind the vanguard of whatever's current.
I'm always confused about NVLD. So many of the right-brained deficits it describes also cross over into autism factors. What we try to pigeonhole as entities are probably so much murkier.
Christophersmom--I'm glad you're participating in a Circle of Friends group! It was such a positive experience for us--I hope it translates that way for you and the group, too. The question about "cure" didn't come up when I presented about TH. I agree that we should strive to be careful and neutral when responding to this young and impressionable audience.
I've been thinking about this post since I read this this morning....wondering what the other mother's response was when TH spoke up (good for him).... I've been thinking, the situation is analogous, somewhat, to how I would have felt to have someone come into my classroom to tell me about "Orientals" (that never happened, fortunately).
Hi I came here from Kim's blog.
I think the bottom line of it's all that autism is more than diagnosis but it's an idenity and to invalidate that, is rather cruel.
Whew. I had not yet considered how the cure-vs.-acceptance split might play out as parents come to present their "take" to their kids' classes.
Thanks for the perspective.
Jeepers. TG the cure vs acceptance thing hasn't played out too badly here in Ireland.
I do however have direct experience of being "mentored" in the early days by a curebie- and feeling pretty darn alienated by the whole thing. Took me a while to find some acceptors to hang out with, smoke down the back of the bike sheds, and organise to get some moral support and evidence based therapy happening.
Farm wife: words fail me!
xx
This is a wonderful post Emily. I too have wondered what (and if) to tell my son. He has PROGRESSED along the spectrum from ASD to PDDNOS... he has not been CURED. And i would resent anyone going into a classroom and filling everyone's head with this stuff. While everyone is entitled to their own opinion on this and I do respect others opinions, I feel a talk to a classroom should perhaps be given by a Psychologist ie a Professional?? The responsibility of what other children are told should be that of a professional, I believe.
Well done to TH putting his hand up!! I may be robbing some of your ideas too! xx Jazzy
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