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Posts Tagged ‘non-verbal autism’

I made a few mistakes watching this film. I watched it the day before Archie’s birthday, while alone in the house with a bottle of wine, having not had much to drink for six months. I then decided it would be a really good idea to post a sort of running commentary on Twitter. You know, just to ensure total public humiliation. Oh how I laughed the next morning.

Anyway all that aside this is an incredible film. A documentary narrated by Kate Winslet it tells the story of Margret who travels from Iceland to Europe and America in an attempt to better understand and help her severely autistic son Keli. Along the way she meets  Temple Grandin, Simon  Baron-Cohen and  Catherine Lord as well as families living with non-verbal autism who are using typing and letterboards as a method of communication. Towards the end of the film Keli is introduced to a letterboard and now is able to write poetry.

Kate Winslet was so touched by Margaret’s journey that she started The Golden Hat Foundation   ‘a non-profit organisation dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable’. The name for the foundation came from one of Keli’s first poems:

This boy had a golden hat.
The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.
end

Keli Thorsteinsson

If you watch one film on autism this year make it this one. Although I howled my way through the diagnosis scenes this is a film that sends a strong message of hope.  It’s not yet known how many non-verbal people with autism have the potential to type as it’s not something that’s really been tried, indeed it has been discouraged.  The prevalent view of severe autism is still that if you can’t talk you have nothing to say. More that that, you are not capable of having anything to say. Films such as this challenge this view while organisations such as The Golden Hat Foundation provide us parents with support as we explore our children’s competencies and potential. Important stuff.

A challenging film, it’s also quite a challenge to view it in the UK. Currently you need a multi- region DVD player.

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I can’t tell you much about this film/documentary except that from the trailer it looks brilliant. It’s narrated by Kate Winslett and shows children with severe autism typing. Judging from chosen clips it shows all sorts of other more typical behaviours that go with severe autism as well. It’s changed its name since I first came across the trailer on YouTube; from ‘The Sunshine Boy” to “A Mother’s Courage: Talking Back to Autism”.  I think I preferred the original. Hey ho.

It looks as if it will go straight to DVD (following in the footsteps of The Black Balloon which deserved a general cinema release in my opinion, but didn’t get one). You can register to pre-order a DVD here, although it’s not clear whether that will be for a US or UK version.

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Sorry I can’t really review The Center for AAC and Autism yet as I haven’t had a chance to look at it. I’ve glanced long enough to get very excited about how interesting it looks. I remain very interested in how AAC can be used to help those who remain non-verbal and feel it’s something we haven’t really yet got to grips with using as well as we should be yet.

My son is pretty flexible in the way he communicates these days, he’ll use photos, pictures on the wall, dragging, reference objects, PECS, the few signs he has, anything really. He recently produced his first word combination that just about represented a sentence.  Non verbal of course, but there to be encouraged. Recently a lot of people have commented on how much he is trying to communicate and I feel we should be doing more to help him.

I was reminded of this yesterday. Yesterday was a Thursday. On Thursdays my Dad usually comes in and makes buckwheat pancakes for all the kids. This is a longstanding tradition dating from the time when number 1 son didn’t eat anything. However, Grandad had things to do yesterday so didn’t come in and I started to cook a big family meal of  spag bol instead. A few years ago this would have been met my much screaming I guess. But instead number 1 son appeared next to me with a pancakes PECS symbol in his had. He then pointed at the pan I was using. I don’t think he really wanted pancakes; he actually prefers spag bol these days, he wasn’t using his PECS symbol to request. He was telling me that I’d mixed up my days and it was pancake day. I just explained that no, Grandad wasn’t coming in today and he was quite happy. No complaint, accepted the explanation and off he went.

Edited to add: I’ve had a look in further detail at the website now. They use an approach called LAMP – Language Aquisition Through Motor Planning – this interests me a lot as it takes into account of the motor issues that  I believe many children with severe autism have. Something that many people forget or underestimate. Unfortunately it looks a little difficult to access training from the UK. I will try and contact the center though to find out. They also use an AAC device that looks absolutely fantastic, but it is thousands of dollars. It’s probably a fair cost given the limited market and costs in designing the device, but it just makes it unaffordable for most.  They do give advice on funding sources (for those in the US), and there are UK funders available (weirdly social service can be a resource for this sort of thing) but I personally would be concerned about spending that much on a device -even with funding-  without knowing in advance whether it was going to work for us.

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