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Tuesday 15 November 2022

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.   





25 comments:

  1. Hi Peter

    My son learned basic speech quite quickly and by around 3 knew all 26 phonics sounds.

    I’m told that’s not particularly unusual with autism maybe due to premature brain growth?

    Then that’s as far as he got

    Age 7 now he’s not progressed beyond single letter phonic sounds despite myself trying different things.

    It’s likely there is some sort of biological barrier there too but
    have you heard any techniques available to teach reading skills with autism that might work?

    ReplyDelete
    Replies
    1. You have to consider both receptive and expressive language. You first work on receptive language to see what words he understands. You cannot usefully read words you do not understand.

      You can expand receptive language using picture cards or an app.

      Once you have a large vocabulary of words you understand you can learn to read them.

      There is a very good app called headsprout.com which helps children struggling with reading.

      When it comes to speech for some children with autism the problem is low cognition, this becomes a barrier. In some people cognition is not the barrier, the problem is biological. Some drugs like calcium folinate really do seem to increase speech in some people.

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    2. If your son can recognize single letters, then the jump to recognizing words shouldn't be impossible. Yes, it might be harder if visual perception isn't working well, a word is after all a bit more complex to see than a letter, but it should be doable. Unless you suspect severe dyslexia on top of autism.

      I find that whenever there is learning involved, motivation becomes extremely important. So whatever words you want to teach first have to be important for your child. This can be done in an infinity of ways, here are three examples:
      -Have three similar boxes, two empty ones and one with something nice in it (like a cookie or toy). Write a simple word or name on each box (Pete/dog/car/). Then ask for the word written on the box with the cookies in it. Open the box, and if correct, reward with the content.
      -Memory games with a written word on the upwards side, pictures down. Matching the written words makes it easier to find a pair.
      -Treasure hunt or hide-and-seek with post-its. Write a single word clue (like hall/dad/car) on a post-it to find something sought-after that is "hidden", maybe a certain toy or a sibling.

      If verbal output is not working at 7, I'd recommend to try an AAC device to be able to work on language development anyway. In some countries you can get a device funded by the state or by different pro-bono initiatives. If not, there's fairly priced applications you can use on a cheap tablet instead.

      /Ling

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  2. Peter, Glad to see you write about this. I learned about Soma’s method back in 2005 when my son was in first grade and limited by PECS. I taught him myself. If you don’t believe that your kid is capable, that you do not have the wherewithal to do it, that you need to pay someone $150/hr for it to work - then it might not work. There are so many doubters and negative commentary from groups that likely have no direct experience with it. I noticed NCSA felt the need to pick a fight with this approach. I couldn’t resist commenting on their post about it. Syracuse University has an entire center devoted to teaching independent typing. When my son was in school, I made instructional videos for teachers of me working with my son and him typing. A report from a therapist from Syracuse was included in his IEP. Like you say - if it works it works. As for the doubters: I can’t be bothered with them.
    ~Tanya

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    Replies
    1. Tanya, I also follow what is going on at the NCSA. It is good that they got set up; they have a difficult task to represent a group where life can be very tough. They do seem to overdo rebroadcasting all the very negative stories from around the world. Even in the dark sky there are some bright lights.

      Highlighting stories of success where parents have taught their non-verbal child with level 3 autism or IDD to communicate might be more helpful. They could ask for case histories from parents of adults who were successful, like you, as a means of helping the next generation of parents.

      People need hope, but they also need to learn that much of the outcome is down to them. Nothing comes easy and the amount of time required to achieve positive changes can be enormous. Every little step takes you closer to a better brighter place.

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    2. Any advice for making typing on a physical keyboard easier? And how to teach two-handed typing?
      We're at the point where she has started to use the letter buttons on her tablet to type approximations of words that are missing from her device, so she's already motivated. But to become faster and use both hands will be a big challenge motorically. I'm thinking it's better to start as early as possible.

      /Ling

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    3. Ling, I wonder if how teaching piano to a child could transfer to two handed typing skills? I don’t remember what that was like for my older (non ASD) son when he started piano at age 7. Maybe exercises at a piano where awareness is brought to non dominate hand fingers would help? My ASD son at age 23 still pecks at keyboard with one finger - I haven’t thought about two hands for him if he gets the job done fine enough with pecking. But I’m intrigued
      ~Tanya

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    4. LIng, there are alternative keyboard layouts that are more rational than Qwerty. Querty was designed to avoid typewriter key from jamming, so the most used letters are not close by.

      A common alternative is Dvorak, which is supported by all operating systems. Apparently it is much easier to use,

      The only issue is whether using a different keyboard to 99% of other people is a good idea. I would still suggest looking into Dvorak, try it yourself.

      I type like Tanya's son.

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    5. Tanya, Peter - thanks for comments!
      The piano idea is good for many other reasons, not just typing and fine motor skills. And you are right, maybe it's not such a big deal to be able to write with two hands. But I'm picturing this will be the primary way of communicating with others, and speed will help that interaction. Especially other kids don't have much time to wait for an answer.
      I'll check Dvorak as well, and maybe those keyboards where left and right side are separated.
      /Ling

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  3. Dear Peter, and everyone else….My daighter always had sound sensitivity. With Ponstan it is greatly reduced. What this enabled her (and us) to discover is her love and capability in music. She spends a big chunk of her day playing with various instruments. She is going to drumming and keyboard lessons, which she loves. Through some circumstances we learned that she has perfect pitch (any note I play whole she is turned away from the keyboard she will instantly recognize and play). She can also harmonize her voice to the played note but she doesnt know that she is doing this so we can’t instruct her, she only does it playfully on her own.
    Its wonderful to see her discover all these skills and enjoy herself learning - something she never did. Thanks to all the immunological therapies but also Ponstan, we got here.

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    Replies
    1. Great news, I hope more people try Ponstan. It is a remarkable drug, in older people it should protect against Alzheimer's , but in many countries it is just another cheap pain medication. It is OTC in many countries.

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    2. I am trialing ponstan for sound sensitivity. It is helping in some other ways too. The only setback is his hyper activity increases a lot. I am using 500 mg a day divided into two doses.

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    3. I suggest you try 250mg once a day.

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    4. Peter, I contacted Kunt through email and he was kind enough to respond. He said Ponstan may not offer much help for my 4 year old son for speech. He also said that for a mom of a 2 year old son, Ponstan did not have any lasting effect on language. Maybe I can still try it for sound sensitivities which my son still has.

      Anonymous, wonderful that Ponstan helped your daughter with her music skills. Feeling encouraged to try it on my son as he used to respond to and enjoy music a lot when he was 2 years old but it all faded gradually. It's funny my NT daughter also has perfect pitch which she started showing when she was 4 years old by playing random tunes on piano. It took 2 years for us to find out that she had that skill as we had no clue about it.

      akhdan, Knut mentioned in one comment for mutism the dose is 6 mg/kg 2X a day. Not sure if it is a good dose for other ASD issues as well

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    5. Peter, are you still doing ponstan for your son or did it change the sound sensitivity ?

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    6. Yes, we still use 250mg once a day. It only affects sound sensitivity if you keep taking it. There is also a positive effect on speech and other less specific benefits. It has had no GI side effects at this dosage. It is well worth a trial.

      Delete
  4. Peter- I came across this-


    https://holisticgear.com/product/suramin/

    Have you had anyone attempt this type of suramin with success?

    ReplyDelete
    Replies
    1. No, I have not heard of anyone having success with something claiming to be Suramin. It is available as an expensive research chemical, which will be genuine.

      Delete
  5. Hello Peter, I've just read this, might be interesting.
    All the best to you and Monty!
    Eszter

    https://read.qxmd.com/read/36364000/repurposing-sglt2-inhibitors-for-neurological-disorders-a-focus-on-the-autism-spectrum-disorder

    ReplyDelete
    Replies
    1. Thanks, Eszter.

      Another family of Type 2 diabetes drugs that might be repurposed.

      Delete
  6. Hi
    I had written to you regarding my son's urine incontinence after 5 years at 10 yrs.After 1 year of nothing working,Dr prescribed him Fluoxetine.
    It has stopped his problem from the day he started it but the bad thing is he keeps on repeating can i go potty non stop.Dr had prescribed him Fluoxetine
    as he things it might be ocd.All blood trsts and kidney us are normal.

    Any idea how to stop him from saying
    Can i go potty all the time

    ReplyDelete
    Replies
    1. The first thing is to gradually fade away the Fluoxetine/Prozac and see if the incontinence stays away, which it should.

      You now have a behavioral issue and to solve that you need to consider the exact circumstances. Only you can do this, because you know all the details.

      Odd repetitive speech is a common feature of autism. In the case of scripting, it is the repetition of phrases from a favorite cartoon or just words that are somehow enjoyable to repeat.

      In your son's case the need to urinate frequently has past, but the need to talk about it has not. One obvious question is what you do/say when he asks to use the potty. He may well enjoy your response, even if it is an angry one. Try making no response.

      You could redirect his potty interest to a toy. For example, find a favorite teddy bear and a potty/bowl.

      When your son talks about the potty, but does not need to urinate, you can pretend to misunderstand and say:-

      "Hurry, hurry teddy needs his potty."

      He goes to find his teddy and potty, maybe you need to prompt him.

      You say "well done, teddy was really bursting to pee - good job !"

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  7. My son started seeing Soma when my son was 8 in 2015. We were lucky to live in Texas at the time so we could see her rather frequently. She’s the most brilliant yet humble person I’ve ever met. She gave my son a voice beyond just “manding” for preferred objects. It was a thrill to finally learn his favorite color, favorite song, what he wanted to be when he grew up. It wasn’t all overnight. We worked with the letterboard a lot at home and I transitioned him to a QWERTY keyboard after years of using the letterboard. He’s now 16 and independently typing. Can’t imagine what life would be like if we hadn’t met her.

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    Replies
    1. Thank you for the comment; it is so helpful to hear the long term result from parents of children who are now much older.

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    2. We never got to see Soma. When my son was 7 he was signed up for her camp (this was back in ‘07) but he ended up being diagnosed with a cancerous tumor and was recovering was an intensive surgery when the camp date arrived. The clinic wouldn’t refund our deposit which was $400 at the time. Nevertheless I bought her tapes (VHS at the time ha!) and did it all myself. It can be done by a parent - absolutely.
      ~Tanya

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