20 Jul 2006

Not a novel treatment for autism

A few days ago, I listened to the BBC Radio 4 programme, My Brilliant Baby; a discussion about hothouse parenting versus benign neglect. One of the contributor's said she and her husband had started out as laid-back parents, but when they realised their son had autism and his special-needs nursery was inadequate, he started 4 years of intense behavioral therapy. She says about her son;
His play was terribly repetitive and obsessive and he wouldn't really communicate with others. If he was going to learn and grow up as a whole person and happy person, Sam was going to have to be actively taught all the things that other children just absorb naturally (snip)

Sam underwent 40 hours of lessons a week with a team of behavioural therapists (snip)

Everything in Sam's environment became super-controlled. His favourite toys-his beloved dinosaurs-which he would arrange in circles again, and again, and again, and again-they were all put away and he was only allowed to play with them for half an hour every day.

He had to learn everything. He had to be taught to look at people and recognise emotions. He had to be taught not to grimace weirdly and not to walk away while someone was talking to him.
She then refers to some books they made including one which began;
'I must not talk all the time about dinosaurs, bugs and death.'
(said in a monotone, to the merriment of the other guests.)

She mentions that when they were out for a walk she thought;
'Oh good, he's generalising social skills', for as Sam was gradually becoming human, I was becoming a creep.

We kept on Sam's therapy for 4 years. I think it was pretty successful, though of course as he doesn't have a twin, I can't really tell how he might have shaped-up without it.

Sam is 10 now, and although he is still a difficult boy and needs support at school, he has genuine friendships with other children and he also doesn't seem strange the minute you meet him.
They gave up the therapy after 4 years because 'Sam needed to have a life.'
He now says rather poignantly, 'When I was young, you ever let me play with my elephants, and there were always these ladies everywhere. I never had any space.'
I thought this was a interesting interview. The mother obviously wanted to help her son, but the piece included many autism cliches that I believed for a while when Duncan was diagnosed. It's sad that she felt she had to fill his days with so much therapy and restrict his access to his favourite things.

I heard this programme on the same day as I wrote my post A novel treatment for autism. It describes the opposite approach to that we are taking with our son. Duncan plays with trains a lot, or with his little Zeebad figure and paper tube characters. His play looks repetitive, but I wouldn't think to restrict his access to those toys. I also know him to be fully human already, even without such training as she describes. Although I have no way of knowing whether this is the right approach, I would imagine than when he is 10, he will be happy in his own skin, perhaps he'll have one or two good friends but he will seem strange to people who meet him. About that last part, so what! As my children are learning, different is good!

10 comments:

Bonnie Ventura said...

How very sad, indeed. Kids can learn so much through their interests. When my son started school, he was fascinated with volcanoes and castles, but he wasn't very motivated to learn reading and writing. His first grade teacher, who was a very nice lady, encouraged him to imagine what would happen if his class went to see a volcano or a castle and to write and illustrate stories about it. This was very helpful in developing both his reading skills and his interest in writing.

4 girls and 3 boys said...

My youngest was in a SEN assessment nursery for 6 weeks ( we pulled him out) and part of the "training" was not only taking his favourite toys off him like his trains but also his clothes like Thomas socks and jumper. I think it was cruel and said so at the time when I found out.( they took his clothes off him and put theirs on so I didn't know cos he couldn't tell me). He doesn't bother with Thomas anymore of his own accord and has moved on to other interests. Amazing considering he has 6 train sets from my First Thomas right through to the latest. All ASD kids do move on if left to let go of something gradually - also what is wrong with them enjoying certain toys? I think the fact they don't always generalise often mean they get very, very good at one particular thing they can use for a job when they get older. Like my eldest has.

r.b. said...

Good post!

It isn't giving up on your child...it's giving in to who he is by nature.

I always did the things I wasn't supposed to do, like giving up on fixations. For a good 4 years it was trains, then it was radio's, then cars, then camera's, now remote controlled airplanes and cars and motorcycles.

Our kids do PLAY, too! It's just not recognized as such. Most kid's play centers around language, more difficult for our kids so they find their own way.

Jannalou said...

All kids have obsessive interests, too. I worked with one of my clients in a preschool where one of the other students was obsessed with Batman; another with Spiderman; and the girls all wanted to be Disney princesses.

It's the nature of childhood.

Carol said...

Well written post. And I agree, they need to be left alone to play and be however and whoever they like. How very cruel that parent was, albeit inadvertantly. I cant believe it didnt break her heart to deprive him of the things he loved.

Alyric said...

That was the BBC interview that Phillip cited on Michelle Dawson's QT board? Very intersting. I got the distinct impression that the ABA was oppressive - though she said it was successful, everything she actually said about it was negative. The poignant moment was her son describing how when he was alone with his Dad (who "didn't buy into this as much") he was allowed to play with his dinosaurs. He remembered that as a wonderful thing. How sad.

Sharon said...

I too think that all children have things they are particularly interested in at different times. For Lady, right now, it's everything to do with Harry Potter. I've let her indulge in this interest and she has listened to the audio-books over and over and plays out scenes and wants all her birthday presents to be HP themed. One of her best friends is into all things Narnia related. They're not autistic, so their play isn't described as 'repetitive', nor their interest as 'obsessional'.

It's clear that children learn so much through the special interests they develop, and like R.B. said, they change interests eventually too. I'd love to see Duncan get interested in dinosaurs. But right now it's mostly 'The Magic Roundabout' and 'Snow White' so we'll work with that!

Ruth, I agree about specialisation being a good thing. Your eldest son has just had great success in his history course as it's been his passion for years. What could be better than to earn your living doing what you love.

Alyric, it's the same show Philip wrote about on Michelle's board. I thought it was funny to listen to on the same day I had worked out and wrote about helping Duncan to thrive. I was touched by the part where the boy's Mum described his eyes shining with joy when remembers trips to the Natural History Museum with his Dad, who, as you say, wasn't as sold on the treatment. The boy obviously learned and benefited far more when his interests were indulged.

CyberScribe said...

I thought you might be interested in this article by Dr Michael Fitzpatrick entitled
The trouble with autism-lit
"A spate of new books confirms that making autism ‘fashionable’ is not making life any easier for the parents of autistic children".

Jules said...

I enjoyed that post, thought provoking.

Elder Faery said...

A very interesting post Sharon. It reminds me of that indian lady doing the 'Rapid Priompting' thing with her son (google the phrase)..which was basically nagging him non stop. I tickled me the way she'd react to his 'stimming' "Hey! Stop that! What are you doing? Stop doing that with your arms!!" We had a humerous half assed day trying the rapid prompting with Willow, but nobody noticed anything different in my behaviour or approah *humpph!* I do admit to using the phrase: "Stop with the noises already!" rather too much...but y'know, sometimes it has to be said.

We also went through an intensive period of 'curing' Willow which was brought about when he went into the Steiner school. They wanted him in curative Eurythmy every day for an hour and over to the Waldorf doctor for (expensive)treatments and there was this constantly updated conversation going on all the time with stuff like this: "You must remove all plastic objects from his sleeping environment" "He must be dressed in snug fitting clothes" "You must not give him white bread" "You should try to do the same things every day at the same time" etc etc. They were always suggesting 'cures' for him. Basically the aim was to make him into another boy. The one time the school teacher showed pleasure in him was when he had about two weeks when he was very distant and slow (probably due to all the wierd remedies) and the teacher came up to us smiling and said how wonderful it was and that others had commented that he was like 'another boy entirely'. They wanted another kid, not Willow:( Alarm bells went off in my head..and it was shortly after this I told em all to stuff their remedies and cures up their watchmacallits. I don't want to cure Willow. He is whole. If anything needs to be cured it is my irritability and concern about outside opinion. But the lad? He's fine and we love him:) Thanks for your post, Sharon, it was very thought provoking.