This report summarises the problems with FC (facilitated communication) and it is cases such as those described in the link that have led to organisations such as Research Autism describing it as  a potentially hazardous intervention. Certainly it can be and it explains the approach taken by families such as Carly Fleischmann who has only ever typed independently. 

However, there are  non-verbal adults now typing independently, Lucy Blackman  for example, who state that without having a period in which they were supported physically they would never have learned to type. Certainly the movement difficulties experienced by those with autism (particularly non-verbal) are poorly understood. I've noticed when working on typing with Archie that some days he can type completely independently and other days he needs his arm supported. Our typed communication doesn't extend much beyond asking to go on a train or to a beach so the issue of competence has yet to arise (he has demonstrated in multiple ways that he is quite capable of asking to go to the beach or on a train). 

Portia Iversen who promoted the Informative Pointing Method emphasises the need to move towards independent typing even though physical support may be needed initially in order to avoid these sorts of controversies. As technology advances this becomes easier. Archie, for example appears to find typing on an iPad far easier than using a keyboard. He also finds rearranging letters from a selection on a touch screen easier than any form of typing although he may need some verbal support to stay on task 'what's next?' etc. With apps and the iPad can explore typing as a means of communication, while encouraging independence and hopefully not running into too many issues around proving competence. 

'I came to language late - about twelve years too late. ' (Lucy Blackman, Lucy's Story)

I've read a lot of books on autism. This is my stand out favourite. I was given it as a gift seven years ago when Archie was five and it changed the way I understood autism and how it affected him.  An autobiography by Lucy Blackman, it  tells how she learned to communicate via typing.She describes her understaning of the world and her sensory experiences and movement difficulties in detail, it really is a true insight into apparently severe autism. Weirdly Archie's development to date has matched hers and she provided us with explanations of why Archie wouldn't walk underneath trees and why he gets stuck in particular movement patterns. They even both used to sing Old MacDonald had a farm when cross.

This book should be better known as it challenges our assumptions about non-verbal autism and provides a detailed description of living life day to day with severe autism. Lucy learned to type via Facilitated Communication, a highly controversial technique, and I suspect that may in part explain why her story is not better known. However, today she types independently and her autonomy cannot be  questionned even by the most cynical. Lucy herself has said 'I find it difficult to understand why other people are more interested in the process of what I produce than the content'. Indeed

Freedom isn't a word I'd usually associate with autism. Severe autism leads to high fences, locked doors, shut windows and constant one to one supervision. But sometimes it allows a freedom of movement denied to the rest of us as we conform to social norms and expectations. 

A friend said to me recently 'it must be quite nice being Archie, you can do what you want'. I had just told her how he likes to touch the surf instructors as they're getting changed to see whether their skin is cold and he'd just  been raiding her fruit bowl, organising her washing and rummaging through her cupboards. 

We're all working hard at the moment to try and improve Archie's literacy, particularly as he is now showing an interest in typing. If you can't speak or sign very well then typing is probably the next best thing. It's not all that easy to teach reading and writing when you can't speak and your language is limited. Louis  my six year old son brings home books from school which he reads to me - this isn't really an option for Archie. So we look for alternatives

A lot of early literacy apps use very babyish images, no good when you're working with a 12 year old. Or they use a lot of language. One of my favourites so far is ABC Magnetic Alphabet available from the app store for £1.19. School discovered a couple of years ago that although Archie pretty much refused to use a keyboard he would happily rearrange letters on the smart board, and that's how I use this. Drag out a bunch of letters and get him to rearrange into a word. 

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learning-to-read-write-when-non-verbal-magnetic-letters-dEBnGdpxlzgaBHnpqcsj.zip (70 KB)

When you start talking about communication with people with severe autism and severe learning disabilities the issue of competence soon arises. Especially when you start talking about people apparently and outwardly severely affected by their autism typing.

I found this out the hard way. In the UK it's common for services such as NHS hands on speech and language therapy (SALT) to be given hands on only if a service user is deemed likely to make an improvement within an allotted time frame (6 weeks seems to be common). So if your child (say) has complex needs they're unlikely to be provides with hands on SALT. If you're lucky you will meet with a SALT a few times a year and he or she will act in a 'consultative' role - i.e. dish out photocopied sheets a.k.a a communication progamme giving advice on how to work with your child. It's a fairly hopeless situation to be honest. Years ago this was the situation we found ourselves in - it was frustrating because Archie was able to work well at home and I felt his complex needs left us floundering and yes I attempted to secure more hands on SALT from the NHS. I was told at the time that he couldn't have SALT because 'he's not capable of anything is he' and I argued (politely but firmly) against this less than helpful point of view. We didn't get anywhere and ended up employing an excellent private SALT to work with us.

I didn't think much more about this - we got on with working on language and communication and the years passed. Fast forward to the term before he was starting school. His first placement was not at the wonderful special school he now attends. He was a at a regular mainstream school and the relationship with staff was something that required some work (on both sides). I was horrified therefore to find out via a friendly professional then working with us that the school had phoned her to ask whether I was 'realistic' about Archie. They had been informed by a SALT who had never met me and had never met Archie that I was 'well known for being a mother in denial'. Thinking back I realised this must have stemmed from my argument with the local SALT service about their lack of hands on pre-school provision.

Apart from being livid that someone who had never met us was doing a good job of spannering my working relationship with the school before we'd even started there I also found the idea that I was in denial rather amusing. I was the first to suspect autism in Archie (at 17 months) and had a year and a half trying to persuade professionals to assess him. At that stage he was diagnosed with 'mild language delay' (and no doubt I was diagnosed as an over-anxious mother - it's fun being a Mum). I do believe in where possible working with professionals, they can help and we now really have a great team of people working with Archie who do understand him and believe in him and listen to us - and helpfully view us as relatively sane.

I  learned the following from this episode:

• If you are working with professionals who only see your child in an artificial clinic setting they may find some of your descriptions of your child's achievements hard to believe. Be careful how you phrase them.Some people will find competence in those with severe autism hard to believe. Any competence.
• If you want to work on something like typing at the moment it is hard (not impossible) to get professional support. More on that and suggestions on where you can find support and advice in future posts.There are however a lot of families beginning to work with things like typing or getting older children who are non-verbal talking - YouTube is a great place to find some.
• Don't get too upset if you become labelled 'in denial' or 'over-anxious' - this seems to be pretty ubiquitous. When I meet other parents we now swap the labels we have received, it's all good for bonding.
• Finally - and this is the big one if your child is doing something really rather clever (typing/writing/some speech - whatever) don't bother telling people (especially professionals) video it and SHOW them. It's your best safeguard against the silly in denial nonsense. I use video a lot now and haven't had a raised eyebrow look in years.

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Surfing.zip (237 KB)

When Archie was first diagnosed we could only think about life in neurotypical terms. Everything we did was with the aim of working towards normality, and a life we recognised as worthwhile. We researched (and tried) therapies, we read up on ways to encourage speech, to work on language to search for the answer (we thought there was one).  As the years passed it became obvious that normality really wasn't going to happen. Archie is 12 now, still non-verbal and still requires a lot of day to day help. 

By the time Archie was 8 it was becoming pretty clear that his life is likely to be a severely autistic one and we needed to start living it. We needed to deal with the fact he was severely autistic and stop waiting for him to be magically high functioning enough to suddenly be able to access mainstream activities. We also began to understand that a life doesn't have to be so-called normal to be worthwhile - he has a good life now and there's no reason that cannot continue. And so since then, slowly, we've increased the activities we do. It seems like a small thing, but when I became a Mum I imagined doing things that were fun with the kids, not hours of autism therapies and so we began to drop those and focus instead on experiences. After all isn't this is what life is about - a series of experiences?  

Which brings us onto surfing. With Archie being non-verbal with challenging behaviours  and limited awareness of danger- surfing didn't exactly leap out as a potential activity. We'd never have tried surfing with Archie  without the surfers going out of their way to encourage participation. Initially he was able to go on a few trial sessions at an annual event called Breaking the Barrier - which to our surprise he loved, now he goes out regularly with a local surf school, and occasionally even with me (yes, the surf school has been giving us lessons). 

Sometimes he rides on a an extra long board and the surfers can pull him up to standing, other times he goes out on a 9 or 10 foot board, gets pushed into the wave and then is on his own. He's quite happy to scoot along on his tummy or kneel and with a lot of encouragement and yelling from us will occasionally try to stand. 

He gets a real buzz from it. These days  I tend to think his autism isn't such a problem in itself, it's a pain when it stops him being able to do things, especially fun stuff-of-life activities, so surfing is one of the things that has made a real difference to his life and all our lives.  

We've been surfing this morning, and life is good.