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.