Susan's Blog

Wednesday, November 29, 2006

Beware of Dogma

I just had an experience which only underscores what I have always believed E.N. (Era of Nat. Prior to Nat, I was W.C., Without a Clue). Beware of dogma. I am not referring to religious dogma; I am referring to life dogma.

I have come to understand that in this life, there are no hard-and-fast rules, except the obvious Ten Commandment sort (don’t kill, don’t make people suffer, particularly your parents, don’t order take-out when you have a perfectly wonderful husband menu at home, even when they offer free delivery, etc. ). While my pay-your-dues parents taught me that you had to follow certain prescribed tracks to get anywhere in life, they also taught me that I could do anything I set my mind to. When I was unhappy at college in my freshman year — (I went to Trinity in Hartford; what was I thinking? Only that it was pink and green, blonde and blue-eyed, so beautiful to behold, I must have thought: sign me up for one of those yummy preppy boys! Only to find that they were only interested in dating me at night, if you catch my drift. I was not at all like their Mummies, or their sisters named Muffy or SuSu, so there would be no bringing ethnic old me to the fraternity dance. I think I realized my mistake at last when one young man turned to me at a party and asked, “What does your father do?”
What does my father do? Hello? Why would a fellow 18-year-old want to know something boring like that?
“He’s a high school principal,” I answered. The boy turned back around and did not talk to me the rest of the party. Wrong answer, I guess. ) — I told Mom how sick I was of the loneliness and the snobby people. I wanted friends, a boyfriend, a group of boys and girls who go get pizza together and stay up all hours in their p.j.s discussing Marx. Why didn’t I have that?
“So transfer,” she said.
And I did. That spring vacation I took the train down to Penn and stayed in a high school friend’s dorm room. I looked at College Green, strewn with all types: hippies, princesses, frat boys, internationals. It was like a mini city. I fell in love. I wrote my essay on the train ride home and was accepted a few weeks later.

You don’t like something? Change it. You don’t know how? Find out. Many things are possible in this crazy and wonderful world of ours.

I learned E.N. that rigid beliefs in how the world works are your obstacles. Take the example of writing my book. I had no formal training as a writer. I am not a journalist by background. I am an essayist who has learned how to write what newspapers want (sometimes). I know what I want to write and I find a way to get a newspaper interested. Those are the only rules.

In autism there is a lot of dogma. A lot of people will believe that there is only one real way to teach a kid, and that if you don’t follow that to a T, you will not succeed. Some letters to the editor in yesterday’s Worcester Telegram made that point about me. This mom said that I did not try Nat on The Diet, so therefore I cannot say that it would not help him/cure him. True. I never gave The Diet a fullblown try. I did some of it. Nat’s behavior did not change. In my heart of hearts, I do not believe that it is his diet that is making him behave autistically. I think it is the way the nerve cells grow in his head, the particular deficits of serotonin, etc., that affect his ability to make connections about things he experiences. Maybe if I didn’t believe that so rigidly, I would see an improvement in Nat’s abilities through diet. Maybe. But I have to make choices and I can’t do everything that holds out remote possibilities. That is my own dogma, and it may be that it is a pitfall for Nat. But maybe it isn’t.

Worse dogma is the practitioners who can’t see the forest for the trees. One such therapist practically forced me to buy a DVD player for the therapy room so that Nat could take mini breaks watching DVDs. I told her, “He won’t want to do that. He likes to watch DVDs by himself, when he’s all finished. He doesn’t want minibreaks.” But she insisted that we get Nat to do this her way, that it would be so much better to have him watch a little and it would be a great opportunity for him to learn how to comment on what he sees on t.v.
“He won’t want to do that,” I said, hating to be a wet blanket, “He hates talking during a show.”
But she insisted we try it.

Of course it failed. Nat insisted that he “finish work” before watching anything. He used wonderful language, trying to force the therapist to take the DVD out and put it away! His favorite DVDs, too!

Other practitioners have insisted on one thing or another with Nat, simply because he is autistic and we all know autistic people all respond one way to certain things, right? Like the way some of them insist on visuals for Nat. He is not visual. He listens. He is a listener to noises. He memorizes songs, inflections. He gets distracted by the least little sound. If one more practitioner insists on Mayer-Johnson this or that for Nat …! He can read, for God’s sake. He doesn’t need a stick figure drawing of a bathroom, thank you very much!

But other kids do. So I would never say, “Oh, that visual stuff is crap.” It isn’t for some.

If Nat needs to learn flexibility and fluidity to get along in this world, so do the rest of us. It is only fair.

Please: Curb your Dogma!!


Susan, my Daniel’s most recent teacher sat me down and sang the praises of chelation (this was her first time ever teaching a classroom of profoundly disabled kids, and her experience comes from a mother she knows with an autistic child). Daniel doesn’t even have primary autism! He was born microcephalic and some of his behaviors are autistic-like. I am very interested in autism and have read lots of books on the subject, but also books on Rett Syndrome (which our beloved geneticist had him tested for even though it is an exclusively female disorder. There is a male version that’s very rare, but D doesn’t have it).

I politely smiled and told her that there are a lot of therapies and interventions out there, some of which we’ve tried, but with Daniel it seems to come right down to simple repetition and working on the “right stuff”. Such as walking and tolerating food.

Don’t let the fanatics get to you. My ex-husband is fanatical about the gluten free diet because he has celiac. I fed my daughter GF for the first few years of her life, but so far she tests free of the disease. Daniel was gf for many years. Now I’m letting them experiment with anything he’ll allow at school. That includes pasta.

I wonder why the autism world is so fiercely competitive about therapies and belief models. I don’t find it in other disability circles. Interesting.

— added by Carolyn Murray on Wednesday, November 29, 2006 at 1:09 pm

I wonder why the autism world is so fiercely competitive about therapies and belief models.

There is some of that with other disabilities, e.g. HBOT for CP. But probably not as much.

One reason might be that autistic kids look physically unremarkable, so people assume they must really be normal except for something easily fixable. Even Dr. Down in the late 1800s noticed such differences in the way autistic kids were viewed vs. kids with physical signs of a neurological disability.

— added by Joseph on Wednesday, November 29, 2006 at 2:51 pm

Very true, Joseph, and it brings to mind the whole “Patterning” debate in CP circles as well (it’s an intensive–all day, everyday, form of physical therapy). You’re right, points of argument there, but they are perhaps not as heated (or maybe I just haven’t stumbled onto those blogs/lists).

I get asked a lot when we’re out and about if Daniel is autistic. He stims by holding his fingers close to his eyes and sort of rolling them. He flaps some, and doesn’t make eye contact.

I took him for a haircut the other day and the stylist said she wouldn’t have thought there was anything different about him other than that he looks around 3 years old (he’ll be eight in December). I would disagree with that, but it was a friendly comment.


— added by Carolyn Murray on Wednesday, November 29, 2006 at 4:22 pm

I agree. These kids are all different. My kid is autistic but can be very social and can talk to people (about what he wants to talk about.) One size therapy does not fit all. I would also venture to guess that one type of therapy might work better for my child when he was a younger child and a different type of therapy might be more effective now that he is a little older. Flexibility is the key — being open-minded but trusting your own instincts and beliefs.

— added by Anonymous on Wednesday, November 29, 2006 at 6:43 pm

*applauds* As usual, I find myself agreeing with you. 🙂
I am so tired (even after only a few months in the system!!!) of being told “Oh! This is going to fix it all!”
I was told emphatically that PECS would prevent Alena from talking. Well, when I poo poo’d that by doing it myself, she learned four new words in a month!
I think more parents need to grow a back bone when it comes to their kids and stop letting themsleves get pushed around by a system who doesn’t spend all day with these kiddos.

— added by Anonymous on Wednesday, November 29, 2006 at 7:46 pm

This is exactly why I read your blog everyday. You are one of the few voices on the Internet that doesn’t have a soapbox and push it exclusively about autism. I parent Jared the same way….by researching on my own and understanding what my child needs. I think the autism community can be so harsh in different parents pushing their own “agenda”. We need to treat each other with as much understanding as we ask everyone to use with our own kiddos. And btw, my young son has made excellent progress without the special diet and chelation.

— added by marlene on Thursday, November 30, 2006 at 8:35 am

Sue, you mentioned that Nat is a listener. I don’t know much about it, but perhaps you could try Auditory Integration Training…some kids have done very well with it. Also, Nat tolerates wearing headphones well, and likes music.

— added by Candy on Thursday, November 30, 2006 at 8:59 am

Ah..a post that touches my heart and mind.

You’ve hit a lot of points in this, one being parental doubt (if I only did X, my child would be “better.”). There is no point torturing yourself or your child. Trial and error, experience, knowing your child and above all, respecting your autistic child so that nothing harms their health or self-image is important. There are too many dangerous “therapies” to “try” because parents are full of self-doubt and self-blame.

There is no blanket dogma, cure, therapy, for any one person. For heaven’s sake, we don’t fully even understand autism yet!

Respect autism, respect the child and don’t do any thing could endanger your child’s health.

— added by Estee Klar-Wolfond on Thursday, November 30, 2006 at 12:42 pm

can anyone say: S P E C T R U M

Don’t do the Dogma, do what is right for the individual(s) involved; the parents, the siblings, and ofcourse and foremost, the Autistic child. Error in their behalf, through being open and trying what works for them. Pursue.Evaluate. Adjust.Learn.Live.

Susan, you are the nucleus for many….what a mind, soul and spirit! Dogma is dead.

— added by Anonymous on Thursday, November 30, 2006 at 2:44 pm

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