Filmmaker Elizabeth Horn Nelson, whose daughter is autistic, draws on the military metaphor of autism extensively in Band of Mothers, her piece in the April 11th Huffington Post. Nelson, who has produced Finding the Words—”a powerful documentary film…… about children recovering from autism”—-describes herself as on nothing less than a sort of campaign—-a crusade—with an “exponentially-growing army,” an “anti-autism army,” whose cause is the “controversial premise: autism recovery.”
While “autism recovery” is not at all my cause, goal, or, indeed, concern for my son Charlie, I nonetheless feel a kind of fraternity with Nelson and the “millions of women (and men) all over the world” whom she describes as being in this “Band of Mothers.” At the end of the day—at the end of the story—we are all parents, parents of autistic children, and there are a lot of common and shared experiences that we have all been through: The diagnosis. The search for “what to do.” The stares in the supermarket. Tough times; tremendous times.
Nelson refers to biomedical treatments such as those in the DAN! protocol but does not refer to education, to how autistic children can be taught and to how much they can learn. She does refer to herself as a “teacher” to her daughter and exhorts “educators,” along with researchers, big business, etc. “to give as many children as we possibly can the healthy lives they deserve”; autistic children, she writes, are “sick” and part of a “horrifying epidemic.” All right: Say a child has various gastrointestinal concerns that are ameliorated thanks to changes in diet. As those changes are being implemented, one presumes that the child is also in some kind of educational setting, whether preschool with an aide, a special ed classroom, a self-contained ABA classroom; whatever is appropriate for that child’s educational needs. One hears often of parents “fighting school districts,” of “warrior moms” “battling” for a “win-win IEP.”
If one is going to talk about “fighting” on behalf of one’s child, it is not “autism” that is the real “enemy.” There are plenty of others (school administrators; purveyors of hateful language and ideas) that I would rather rally against and, to invoke the other meaning of “band,” sing a song of protest against.
And if the choice were up to Charlie, it would be something from Jimi Hendrix, perhaps from some of the songs from “Electric Ladyland” that we listened to tonight—something about the rhythms and the guitars and the volumes appeals to Charlie, who has never really seemed to have sound sensitivities. (Sometimes I rather think Charlie revels in loud noises of a mechanical sort like those from an electric guitar, especially when the guitarist is left-handed playing a regular guitar.) Charlie jumped on my bed while listening, and smiling and sort of humming to the music; connecting.
You gotta love it.
Let’s stop the war.
“Thanks for the music tip, Kev”
Ha! Not sure it was a tip exactly ;o)
I love that sort of music and I’m thrilled Meg has progressed from Bryan Adams to proper metal but its not for the faint hearted, but if Charlie likes guitar then he’ll love it – just get the radio friendly versions for the (lack of) profanity.
Great post to follow up my comments on the previous thread, Kristina!
It’s strange though – talking of not fighting. The one common human instinct is to fight when threatened. Even those on the Spectrum aren’t immune to that emotion. I know I’m very bitter and I feel the only way to get what I need is to fight. Of course, it depends on how you fight. I have to be careful not to be self centred, but being an Aspie that’s almost impossible to avoid. Hence my commentary on education – getting other people to understand that.
I write music and lyrics, and a number of songs I’ve written are drawn from my negative experiences. Some examples of song titles;
Nobody’s Fantasy
Game Over (when I first put this on tape I had to hold back the tears on the final chorus)
Somewhere (there is hope)
Dreaming of the Future
The Road Ahead
I will not change
Insane
Of interest – most of these were written before I was DXed with Aspergers (only Insane and Game Over were written after).
On food – I’ve always been a fusspot. My theory with that is that my sense of taste is very sensitive. It could be that this is the case for most on the Spectrum. For example – never feed me cooked vegies, because it makes me throw up. One exception – potatoes. Now cold vegies (salad vegies) I’m fine with. My mother fitted in with that and developed a salad consisting on pineapple, carrot, celery and my favourite dairy food, cheese. Whenever I go “home” for Christmas that’s ALWAYS on the table!
I could say plenty about bananas – but I’ll hold my tongue! *LOL*
It’s often the unexpected that catches Charlie’s fancy…
No, they didn’t talk about gelastic seizures, they referred to those fits in the book as “maniacal laughter”.
In my son’s case it happened two or three times during car rides (while he was totally awake) and a couple of times while he was dreaming in the middle of the night. In between his laughs, he would say “Streeeeeeetch!” just like the guy doing the voice over for the baby on the Huggies Diapers commercial (the baby that works out). There was another thing from TV or a DVD that made him laugh like that but I’ve forgotten what it was.
Leila, I’m remembering now the part when Seroussi mentions bananas—maybe in regard to “gelastic seizures”? Charlie has certainly had sudden “episodes” of laughter that seemed to start from “nowhere”; on more careful reflection, I have realized that something may have been going on that led to him being over-stimulated. I’ve also learned that sometimes these sudden “fits” of laughter have been followed by distress and nervousness—from one “extreme” to the next.
Charlie does not like bananas; any food often seems to lead to him getting (momentarily) excited.
I can just hear it — New CD! Protest Songs for Autism Awareness! Okay, readers, let’s see your videos on YouTube.
Livsparents, I’ve said in my previous comments that I agree that many autistic children are prone to food allergies and other problems in their metabolism. However some parents tend to attribute ALL autistic behaviors to gut issues, and that’s when it becomes almost comical, if it wasn’t in fact sad.
I’ll have you over when I allow my 3 NT kids to eat their entire chocolate bunnies, then we’ll see how funny having having neurological and physical reactions to foodstuffs is!
I personally think that types of foods MAY have the ability to cause mood swings, or at the very least, having a food that did not agree with them could impact their ability to function. But that’s NT OR ASD. I’m still on the fence as to whether thier is an ASD specific ‘gut’ reaction to types of foods in some cases…
Meanwhile:
Increase the Peace, Wage Peace, Fight the REAL Enemies, all that sort of thing…
If I’m not mistaken the banana thing was on Karyn Seroussi’s book, but you can see comments like that all the time on the GF/CF or biomed lists.
My son had a couple of episodes of hysterical laughter, and I could tell exactly what he was thinking of… Some particular scene of a video or commercial that he thought was hilarious at that time. He wasn’t hallucinating or anything like that, and there hadn’t been any changes in his diet. He was just doing what many autistics do… Playing that fun movie on his head while there was nothing else better to do (in the car, for instance).
Now, I just wanted to get back to the topic of your post… My previous comment was more based on Elizabeth’s question “If other children can get better, why can’t my daughter?” I agree parents have to do the best to help their autistic children learn how to navigate on this NT world, but while some kids are able to improve tremendously with lots of adequate therapy, others will plateau at some point. So far there’s no magic bullet, and I believe that what mostly determines how well a child will develop is already written on their genetic makeup.
I also believe that educational/playtime/behavioral therapies are the most important. Drugs and supplements are necessary if the child is indeed suffering from allergies, diarrhea and self-injurious behavior. I would not go to a DAN doctor for biomedical treatment though, even if my child had those problems. I would go to a good, mainstream pediatrician who would not try to sell me snake oils or use my child as a lab rat.
Thanks for the music tip, Kev–
The banana comment got me laughing too and no I did not just eat a banana for lunch.
ROFL. Leila’s Banana comment made me laugh out loud!
You know, the other day I was playing with my son… what HE wanted to play: we each had the end of a scarf, and we were both wiggling it… this would be considered “bizarre” by many… but tossing a baseball back and forth endlessly somehow is “normal?” My son will spin and jump… but if it’s done on a SitNSpin or a trampoline then it’s “normal?”
“Sometimes I rather think Charlie revels in loud noises of a mechanical sort like those from an electric guitar..”
Megan’s favourite band at the moment? Slipknot.
A lot of parents believe that autistic kids can only get better through diet changes and chelation. If the child is upset and aggressive, they blame something the kid ate, or yeast… If the child is laughing non-stop, it’s because they had a banana. I mean, this whole DAN movement is making parents forget that autism is mostly genetic, and that autistic behaviors originate in different wiring of the brain, not on their stomach. I do agree that some autistic kids are prone to “gut” issues and a weaker immune system, and this needs to be addressed. However, no matter how relentless a mother can be in providing the best possible treatments -educational and biomedical- some kids just won’t turn out to be fully verbal and independent. We as mothers need to be prepared for this reality.
That would be something to sing about—
Heck yes! I can’t tell you how sick I feel when I see these violent metaphors used against children. My boy is not sick- he needs love & acceptance, not fighting!