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.   

Non-verbal Autism

For people born around the year 2000, or before, and diagnosed before 4 years old, having autism very often meant being non-verbal. By my earlier estimations, about 0.3% of children are still non-verbal when their peers are already chatting away. Of that 0.3% some will spontaneously develop speech, some develop speech due to intensive intervention either by parents or therapists and some never develop speech.

Being non-verbal does not mean you cannot communicate; you can use sign language, you can write/type, you can use pictures (Picture Exchange Communication System – PECS) or you can use an augmentative communication device. Such devices used to cost a fortune, but now they are just apps you can install on a tablet computer or smartphone. These apps exist in numerous languages not just English, Spanish, German and French.

In 2007 we used PECS and started to use a special touch screen connected to a PC. Using special software, Monty could show that his vocabulary was much more extensive than we thought, even though he could not speak, read or write; it was all picture-based.

I just saw that one American study is suggesting that the incidence of DSM 5 autism is now 2.5%. I think this will inevitably mean less and less attention for those with non-verbal autism, which I suspect is still around 0.3% of three year olds.

Parents or the State?

Who should be doing something to help those who are non-verbal?

This question recently arose when I was talking to the family of an 8 year old boy with severe autism. He is non-verbal, but goes every day to a special school for autism. I asked if he is going to learn sign language, or is he going to get some other kind of means to communicate? Apparently not.  I explained about augmentative communication devices and suggested asking the school about them, or just go and buy one.  You do have to wonder what they are doing all day long in this special school.

There are many alternative methods to communicate, but they all require someone to teach them.

Whose job is it to choose a method and make sure it is implemented?

I guess this depends on where you live.

In my world, the proactive parent would start to do this by the time the child was three or four years old.  Given not all parents are proactive, you would think that at pre-school or junior/primary school “the State” would step in and take some action; apparently not, at least where we live.

So what happens to little kids who have no means of communication? They become adults who have no means of communication and, not surprisingly, they will have major behavioural issues.


Non verbal vs non conversational

Whilst on this subject, there is another important issue to highlight.  Even when some people with severe autism do start to talk, they very often do not become conversational. They can answer questions and make requests for items they want, but they do not become chatty like typical kids.

Some parents refer to their non chatty child with autism as being non-verbal, this really is not fair to those children who do not have a single spoken word.

Some children with autism can sing but do not talk. This may sound very strange but both Monty's assistants also participate in musical/theatrical group of kids with autism that puts on public performances.  They have such kids.

I think if you can sing, you can be "trained" to talk.  It is just requires a lot of effort by someone - parents, therapists or school assistants. 

Becoming more conversational is a continuing challenge in educating a child who was non-verbal. I have a big pile of books and training manuals on this subject and recently decided to re-emphasize this in Monty's daily schedule. We cut back on physical education (PE) at school and one after-school piano lesson.  We already cut out the two foreign languages at school to make time for 1:1 work with his assistants.

By encouraging longer answers to questions both spoken and written, there is also a net benefit to regular school work.  


Studying Severe Autism 

Researchers tend to avoid studying severe autism, which often also means non-verbal autism. Research is focused on what I would call Asperger's and what researchers would call level 1 autism; in DSM5 terminology there are 3 levels of severity.  Clearly it is much easier to study people who can hold a conversation and have a typical or even high IQ.  

There is an initiative, see below, to study severe autism, but for drug producers the big market is mild autism. You can see this by looking at the types of drugs currently in clinical trials.

What Can We Learn from Studying Severe Autism?

   

Promoting Speech in a 7 year old Non-verbal Child with Autism

I was recently asked if I would be happy to talk to the parents of a 7 year old non-verbal child with autism.  I agreed to share what I have learned so far from both behavioural interventions and more recently from drug therapy.  I decided that a dedicated post could also be very useful.

When Monty, now aged 10, was diagnosed with autism aged three and a half, he embarked on a home-based ABA programme, soon complemented by the use of PECS (Picture Exchange Communication System).  PECS is great, and when correctly implemented, clearly can work wonders.  Sadly, most people take shortcuts and just laminate a few pictures, stick them on the fridge and say they are “doing PECS”.

Click below to see short training videos:-

Phase 1 PECS

Phase 2 PECS

 

Once a non-verbal child has a communication system, be it PECS or sign language, then he/she can open up to the world.  Often speech then follows, but not always.

Monty learned to talk using ABA, PECS and special computer software.

With what I have since learned about the possibility of safe and effective drug therapy, I would do things slightly differently.  I would keep all the ABA and PECS and just add Bumetanide, NAC and Atorvastatin.  I can never know if Monty would have then spoken earlier, but I am pretty sure that would have been the effect.

 

Science based, not “Biomedical”, not Complimentary Medicine and not DAN!

Just in case you are wondering, my findings are based on reading the scientific literature on autism and its comorbidities.  I decide what research looks sound and what looks dubious; I draw my own conclusions.  “Biomedical” is a word that has been hijacked to apply to therapies that we would like to work, but usually lack a thorough grounding in science.  DAN seems to stand for trying everything, “Biomedical” and more.  Nonetheless, within the hundreds of DAN therapies are at least one or two that do stand up to scientific investigation.  

By applying a very blinkered view to the existing research, the Medical Establishment’s general view continues to be that autism is pretty much untreatable.  Having accepted this view myself for several years, I have learned that this view is fundamentally flawed; you just have to objectively follow the science and do a little research yourself.

 

7 years old and non-verbal

The longer a child remains non-verbal, the more challenging it becomes.  After a long period of time a child will just not see the point of changing.  It may cease to be a biological problem and become just a behavioural problem.

My combination of Bumetanide, NAC and Atorvastatin is as close as you can ever get with drugs to being risk free.  This has been a prerequisite of mine.  If after 7 years my child was non-verbal, I would probably be willing to take additional risks, but still nothing without clearly understood boundaries.

For the last few years we have had a little box in our kitchen drug cabinet marked “emergency asthma drug, one a half tablets”.  We have never had to actually use this drug.  The drug is Prednisone and it is for use when an acute asthma attack does not respond to the Ventolin “rescue” inhaler.  Prednisone is a corticosteroid, widely available, cheap and saves lives; but long term use can have major side effects. 

Prednisone lowers the body's immune system.  The science suggests that the overactive/damaged immune system in autism is a factor behind the autistic behaviours in children with ASD.  It would seem logical that temporarily lowering the immune system might trigger behavioral change in autsim, such as regaining lost speech or initiating it.  The most serious doctor I could find who is knowledgeable about this subject is Dr Michael Chez, of the Pediatric Neurology and Autism Neurodevelopmental Program, Sutter Neuroscience Institute in Sacramento California.

 

He wrote a paper I have already referred to in this blog called:-

Immune Therapy in Autism: Historical Experience and Future Directions with Immunomodulatory Therapy

In that paper he talks of his knowledge of the effects of prednisone on children with autism and he mentions the dosage used.

. Treatment was usually prescribed with daily prednisone doses of 2 mg/kg/day for 3 to 6 months. Limitations to therapy were usually Cushingoid side effects. As in other chronic conditions requiring steroids, pulse dosing was tried with steroids in the form of prednisone or prednisolone at 5 to 10 mg/kg twice per week.  

Long-term success with no dependence or minimal Cushingoid effects has been noted in several hundred patients treated in this manner (Chez, unpublished data, personal communication).

In all, 17 of 32 patients showed response to prednisone after 2 to 4 months of  treatment (53%). Improvements were seen on EEG and  in language skills of the patients. Other steroid treatment series of regressed language in autistic spectrum patients diagnosed with LKS variant showed improved language with pulse-dose steroids.

Going to California is not an option for most people, but if I had a 7 year old non-verbal child with autism and ABA/PECS did not help initiate speech, then I would certainly read up on what he is suggesting.  I would still focus the time and effort on ABA/PECS and just hope that the drugs provide a little extra push.





 

Finished switching ears off!

I had another surprise a couple of days ago; I was standing with Monty outside the entrance to a very noisy ice-cream bar.  There were babies crying, a lady begging rather aggressively and an orderly queue to enter the shop.  Finally, the noise abated and I heard Monty say:-

“Finished switching ears off!”

Is there more to this than the emergence of spontaneous and appropriate speech?

Selective Hearing, Elective hearing and (S)elective mutism

I once did a course called Noise Control as part of my Engineering degree.  I recall that at the start of the course, the Professor confessed his desire to be able to turn his hearing on and off; clearly there were some noises he would prefer not to hear.

If you have children you will have discovered “selective hearing”; whenever you want them to come for a meal, they just do not seem to hear you.  If you offer ice cream though, they will hear the first time you call.

There is also the relatively common case of selective mutism, in people with anxiety disorders, they lose the ability to speak in stressful situations.

I think that many non-verbal autistic children probably have elective mutism; they just decide not to speak, or perhaps there is a barrier inside them that they just cannot get over.

Many people with autistic children initially go through a phase of thinking their child is deaf.  I know a child who lost his hearing and then a couple of years later regained it.  I met him just after his hearing was restored and I was convinced he had autism; he had all the characteristics.

Maybe some autistic children have elective deafness and/or elective mutism and perhaps a little pharmacological intervention could actually help them overcome this barrier?

For Monty, thankfully, these problems are in the past.  For him ABA and PECS did the job.

 

 

 

See you in Hell then.

Does religion have something to do with treating autism?  It should not have, but actually it does.

 

Depending on where you live in the world, you may come across a lot of religious intolerance.  In Iraq, Muslim Sunnis don’t seem to care for Muslim Shias, in the Indian subcontinent Hindus for Muslims, in Northern Ireland some Protestants for Catholics, the list goes on.  To an outsider, the differences between the competing teachings may seem marginal, but to an insider it can even be a reason to go to war.  It has often been the case that some of those going to these extremes, do not even really understand the competing teachings of their own religion.

 

What you might ask does this have to do with Autism and the subject of my blog?

 

If you have a child with autism, or you work full-time as a carer or therapist, you will likely have experienced emotional stresses that would destabilize all but the calmest of souls.  If you are new to the subject of autism you will probably skip over this part, if not, it will surely resonate deeply.

 

As will become apparent in forthcoming posts, this syndrome is very relevant when sifting through the research papers.  Acronyms are very popular in the literature of Applied Behavioural Analysis, neuroscience and psychiatry. Being a mixture of engineer/strategy consultant/PR consultant and aspiring entrepreneur I often struggle with spelling, let alone remembering what all the acronyms mean.  In this case, I will make an exception.  I will term it Autistic Stress Syndrome (ASS) and define it as when a sufferer loses all, or part of, their rational objectivity and becomes obsessive, close minded and  perhaps judgemental themselves.  A professional suffering from the syndrome will be lovingly termed “a smart ass”.  There are of course very many well intentioned smart asses and indeed some of the most useful people you can know will be smart asses.

 

This blog is all about science.  To be a good scientist you have to rational and objective.  To be a great scientist you also need to challenge accepted wisdom, realize that you do not (yet) know everything and sometimes you might just have got it wrong.

 

In the field of managing/teaching children with autism there are several schools of thought, some of which overlap.  Here is a short list:-

 

1.    Applied Behavioural Analysis (ABA) / Lovaas / Verbal Behaviour (VB)

2.    Floor time / Greenspan

3.    Hannen

4.    Occupational Therapy (OT)

5.    Picture Exchange Communication System (PECS)

6.    Speech  & language Therapy (SLT)

7.    Structure, Positive, Empathy, Low arousal, Links (SPELL)

8.    TEACCH

 

It is striking is that in many cases a professional specialized in one of these areas will not even want to discuss there being any merit whatsoever in the others.  As with religion, if you advocate a mix and match approach, rather than accept a one size fits all approach you will be consigned to purgatory or even hell.

 

When it comes to the field of Complementary and Alternative Medicine (CAM) the religious fervour grows even stronger and science goes completely out of the window.

 

 From my own biased experience of behavioural intereventions, here is what matters:-

 

·         Earliest possible start of intervention

·         Consistency 24/7 among care givers / therapists

·        Superhuman effort to provide near constant, stimulating, one-to-one contact during waking   hours for as a many years as it takes

 

I looked into all methods and found that the choice of ABA/ VB was a no brainer.  VB is just an approach within ABA that prioritizes speech.  PECS is a communication system for non-verbal kids, that is based on the principals of ABA.   Before the child is verbal, Hannen and Floor time are very useful approaches to encourage interaction. SPELL and TEACCH have lots of good methods highlighting the need to have structure, employ visual cues etc.  If the speech therapist (SLT) can teach you and your non-verbal child PECS that would be great.  Motor skills and play skills are a key part of an ABA/VB programme; they are also part of Occupational Therapy.  The OT therapist is probably using ABA without even knowing it.