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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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My first introduction to the idea that people with apparently severe autism could learn to type came from reading Lucy’s Story: Autism and Other Adventures when my son was five years old. Since then I’ve come across Tito Mukhopadhyay and then last year Carly Fleischmann.

My personal view is that there are probably many people with apparently severe autism who could learn to type in this way. The difficulty is finding methods to teach literacy or finding a way to shut off compulsions which seem to get in the way of everything.

On her blog Carly says “I think people get a lot of their information from so-called experts but I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.”  She makes a good point. The reality is that this particular group – those who are apparently severely autistic and who are non-verbal – remain almost unstudied. Research is almost entirely carried out on those who are apparently higher functioning. Very little is known about the non-verbal group at all and many of the comments made by those in this group who do have a voice  (such as Lucy, and Tito and Carly) has been ignored. If you look at the writings of all those with non-verbal autism  they share a lot of similarities  – in particular describing difficulties in movement and in controlling movement. Yet it is rare that this is taken into account when considering behaviours or teaching methods.

When I first read Lucy Blackman’s book I felt I was at last able to find out – from the horses mouth- a little of what it is like to live in my son’s world. It did change the way I responded to him, and it did alter my interpretation of his behaviours. It’s a book I re-read every now and then (along with Autism and the Myth of the Person Alone (Qualitative Studies in Psychology) to remind myself of  the view from his world.

If you haven’t already do watch the videos on Carly’s website. They provide a fascinating insight into non-verbal autism.

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I’ve just come across MouseTrial. It’s computer software that aims to increase vocabulary. Can be used for fun or as part of an ABA program.

We’re not running any sort of program at the moment, but my son has a slight (understatement) obsession with various household objects and would probably really enjoy this. I think it’s something that should be at the right levels as well. I’ll try him tonight. English accents too which is a bonus for those of us in England. It costs $29 or $10 for individuals modules and you can play online or via a CD. You can try it for free.

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Hiyah.net. Full marks for this one. Developed by the  ex-special needs teacher Mum of 2 autistic boys (one with severe and one with moderate autism) she has developed a series of computer games which can be operated using only the space bar. They are designed for children with limited language and are free, with no advertising on the site. There may be some Mac compatibility issues (there seems to be with mine), but hey ho I’m still impressed.

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I’m on a roll today. The Floortime Repository: I haven’t really had time to explore this website properly yet, but from what I’ve seen it looks good. It’s a place to find out more about Floortime, share photos and videos and make friends. If you’re interested in finding out more, or doing Floortime then check it out.

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ian12Archie’s busy sorting out his birthday present in the photo. A karaoke machine. He may not be able to talk, but boy he can sing; pitch perfect of course.  I didn’t take the photo to show that though, I wanted to grab a quick shot of his t-shirt. IAN- the interactive autism network aims to put USA based researchers and parents together. It’s a great site, and although people outside the US can’t participate in the research side, there’s plenty to read and forum to join.

Which brings me onto conferences. The t-shirt was given away free at IMFAR – the International Meeting for Autism Research. Organised by INSAR (the International Society for Autism Research), the 7th annual meeting was held in London in May.  This was the first time it had been held outside the United States and was a great success. Over 1000 people attended. I was lucky enough to be able to attend for free. I was presenting a poster (if you want a copy please contact me – the poster title was either ‘Interactions of children with severe autism’ or ‘Unexpected competencies of children with severe autism’ depending on whether you read the abstract or the poster) so my department paid.

 

Anyway, it was a fantastic conference. Really exciting. There was a lot of emphasis on gene-environment interactions and several of the talks I attended discussed potential environmental triggers. I had a number of very interesting conversations with Dr Derrick MacFabe, Director of the Kilee Patchell-Evans Autism Research Group in London, Ontario. I found his research interesting indeed and potentially very relevant for Archie.  I’m not going to attempt to summarise the research here but if you have a child who you think has gut problems I’d strongly advise finding out more. The Autism Canada website has a very accessible web video presentation by  Dr MacFabe:  ‘ The Self Centred Bug’  along with various papers and articles that can be downloaded.

I also met Adam Feinstein over lunch (a stand up affair with sandwiches served in brown paper bags).  He runs (or perhaps helps run) the AWARES series of online conferences. These are excellent. They take place once a year with additional seminars taking place during the year and allow direct communication with many autism experts. My first discussion with Donna Williams took place at an AWARES conference. Do sign yourself up. Highly recommended and the annual event has something for everyone.

IMFAR was followed by Autism One a US based conference aimed at parents. I didn’t attend, and managed to completely mess up listening to it by internet radio but the conference presentations are usually made available shortly after the conference. The powerpoints can  be downloaded for free with the audio or video files available to buy.  

 As a final comment on conferences that have finished the previously mentioned online Floortime conference and post conference workshop on sensory processing was brilliant. It was a very effective introduction to Floortime theory and practice. Apparently it will run again soon.

 The workshop on sensory processing reflected the growing awareness of sensory issues in autism. I think this is something that Stanley Greenspan who developed Floortime, has always recognised but perhaps others have been slow to really take board. The renewed interest in this area was evident at IMFAR with an invited educational symposium on sensory integration disorders and many posters considering sensory dysfunction.

 And finally – a future conference. The 20008 NAS Research into practice conference will take place in London at the Novotel West on the 19th and 20th September. It does look good but it’s rather pricey, even for NAS parent members.

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Today, something really rather good and…….. free! Having been in the autism world for getting on or 6 years I’m always stunned to find something free. And even better, this is excellent too.

Written by Portia Iversen, the author of the Strange Son book and founder of the Strange Son website it is a 73 page manual that aims to teach you how to get your non-verbal child pointing and communicating. It’s very clearly written, with lots of clear photographs. It’s a fantastic teaching tool in itself and used in conjunction with the website (where you can view videos of others using the method and take part in a forum dedicated to the method) it’s more than enough to provide confidence and lots of material to get started and hopefully up and running with the technique.

 To get your manual you just need to register with the Strange Son website (again free of charge), and then, there it is – yours to download. Very highly recommended, and very exciting, especially if you have a non-verbal child.

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