Facilitated Communication leading to Un-facilitated Communication?

I am surprised how many people with level 3 autism reach adulthood without a means of communication. By that I mean any means of communication, such as:

·        Sign language

·        PECs

·        Augmentative and Alternative Communication (AAC) devices

·        An iPad

·        Writing by hand

·        Typing on a keyboard

·        Talking

You would think that in special schools around the world children would all be taught some method of communication. After all, they have 8 hours a day for 12-15 years to do it.

I am surprised that even in the US and Canada this is not the case. In most of the world special education has much less funding and it is of no surprise that what learning does occur mostly takes place at home.

I was recently going through my book collection, making some notes for what might be useful for my own upcoming book.

When it comes to autism books, I have a couple written by doctors with their treatment ideas. I do like Dr Chez and did buy his book; some readers of this blog do consult him.

I also have a copy of Dr Bryan Jepson’s book, I only skimmed through it.  He has two autistic children, one adopted, and used to work at Thoughtful House in Atlanta, where Dr Wakefield took a position after quitting the UK.  I was curious what happened to Dr Jepson. He went back to being a regular doctor.  His two sons are now adults living at home with him, both are non-verbal and both can be aggressive.  In many ways that sounds like an aging parent’s worst nightmare.  The good news is that both learned to communicate, one can type his thoughts and the other communicates via an iPad.  What I found interesting was that the communication breakthrough did not come at school, but rather courtesy of Soma Mukhopadhyay and her facilitated communication program in Austin, called the rapid prompting method (RPM).  Many parents of kids/adults with severe autism really trash facilitated communication.

The point here is that facilitated communication opened the door to un-facilitated communication.  This is a key point.  If you can never fade the prompting/facilitation, it is not really communication, it is wishful thinking.

I was looking around the house for a copy of the Reason I Jump, this book was written by the mother of a Japanese boy with autism, based on what she interpreted him wanting to say by pointing at a letter board.

There is a follow up book to the Reason I Jump, but is it the mother’s work or her son’s? 

One of Jepson’s sons writes poetry.  Since he can now type, I assume this is 100% his work.  I guess this is in large part down to his work with Soma Mukhopadhyay.

 

Fading the prompt

Parents and 1:1 teaching assistants are naturally protective and this can end up with them giving too much help.  The learner then becomes prompt dependent.

If you never let the learner try a task unassisted, how will he ever truly master it?

I am trying to get Monty, now aged 19 with what was level 3 autism, to be more independent.

Recently I took him about 3 miles (4km) from home to a very familiar place.  He had his electric scooter and I asked him to scoot home.  He set off with me following on foot. I half expected him to stop at the first road junction and wait for me, but just scooted all the way home, crossing several roads.

I repeated the same exercise with different start points and each time he made it home with no problems.  I did observe how he crossed roads and he was very responsible.

Some people did think I was mad, but it turned out that I was not.

 

Teaching someone with level 3 autism to read and write

Learning to read and write is not a challenge for a child with normal IQ who already knows how to speak.  Teaching a non-verbal or minimally verbal child to read and write is usually a great challenge and not one to be left to school.  It can take a vast amount of time and effort. This is not something parents ever expected to be responsible for.  Some rise to the challenge and some do not.

I am sure there are some very good schools where they make huge efforts and achieve great results.  15 years ago I went on a 3 day course to learn how to teach the picture exchange communication system (PECs). There were a few teaching assistants in the group and a couple of parents, the rest were speech therapists and the like.

The thing parents do not realize is just how much time an effort it can take to apply these methods. An hour or two with a speech therapist is not going to make an impact. 

I just read about one parent saying that their speech therapist is trying to teach their child using picture cards. Can he reliably identify the card with a tree when presented with 2 or 3 alternatives? Why is someone paying $60 an hour for a speech therapist to do this?  It can all be done at home with a touchscreen and an app.  I was doing this early in the mornings 15 years ago when Monty with 4 years old.  We spent hundreds of hours doing exercise like this, practising nouns, verbs, categories and other exercises. Toddlers with autism learn by repetition, which can feel like a never-ending process.  The time invested does pay off.     

Once you have learned words using pictures, you can then learn to recognise the written words. These are like sight words.

Then you can learn the alphabet, phonics and spelling.

Then you have the task of putting all this together into actual reading and writing.

Once you can read, the question is whether you actually understood anything.

It can be a painfully slow process, but time is something you have plenty of.

 

Monty 

Monty reads almost every day for about 30 minutes. The long running question was how much he actually understands.

The same issue used to arise when he saw a film in the cinema, how much really had sunk in?

Interestingly, when Monty is asked to what he did at the weekend he makes only a brief verbal reply, but when asked to write about it, he will sit down and neatly write 500 words. If he went to see a film, he will now include a summary of the story.

 

Conclusion

Whatever method you chose that ultimately leads to independent communication was the right one.

If it works, it works.  Whatever anyone else has to say about the method really does not matter.