Why is the evidence for Early Intensive Behavioral Intervention for Autism so weak?

One to one autism therapy is pricey – is it worth it?

Only a handful of countries widely apply behavioral interventions to treat toddlers diagnosed with autism.  Behavioral interventions include Applied Behavioral Analysis (ABA), Verbal Behavior (VB), Pivotal Response Treatment (PRT) and the Denver model.

Even after several decades, the published evidence that these interventions actually work is quite weak.  This explains why most countries do not readily provide public funds for ABA.

In the US, efforts are being made to diagnose autism at younger and younger ages, because the child can then benefit from these “proven” interventions, that other countries do not believe work.  Who is right?  

You can read Manuel Casanova’s perspective at the end of this post.  He is not such a fan of expensive US developed therapies and concludes:-

"spending time with your children and group socialization, in my experience, have provided the most favorable outcomes"

Does ABA work?  If so, why can’t you prove it?

From my personal experience, behavioral intervention was very beneficial as a teaching method, but it does not make autism go away.

In today’s study the aim was to determine if behavioral intervention is cost effective.  The conclusion based on all the studies considered is that there is no conclusive evidence that behavioral intervention is cost effective.  So logically the countries that do not widely fund it, like the UK, can be reassured that they are on the “right side” of the argument.

My view is that is that autism is so heterogeneous you can prove almost nothing, with any degree of certainly.  It is always going to be a case of ifs, buts and maybes.  This also very much applies to clinical trials of drugs to treat autism.

Why did ABA ever catch on in the first place?  People want hope and the more expensive something is, the more people want it.  Forty hours a week of ABA is very expensive and nice to have, if someone else is paying.  

We saw in an earlier post that Lovaas (the founding father of ABA) later admitted to selectively retiring non-responders from his clinical trials, to improve the apparent success of his methods.  This pretty much means you have to ignore all his data and his papers should be retracted. 

Many parents want curative treatments for autism.

Lovaas claimed that ABA is curative and that the treated kids end up like typical kids.  Sadly, this is an exaggeration.

Is two years of ABA cost effective for severe autism?  I guess it depends whose money is paying for it.  Is two years of ABA going to be life changing for a person with severe autism?  Unfortunately, even after 20 years of ABA, that person will likely still have severe autism, if you have not treated their underlying biological problems.

Some parents rave about ABA and make comments like “after two years of ABA my son now makes eye contact”.  Great, but would you pay $120,000 of your own money for that?  I think not.  Should your local government regard that as money well spent?  I think they should be more demanding; the results of just $1,000 spent on the right personalized medicine will be much more impressive.

Today most people currently being diagnosed with autism have mild cases.  If they can talk and do not have intellectual disability (ID) / mental retardation (MR), they will likely see little benefit from 40 hours a week of discrete trial training.  It would be a huge waste of money and probably just annoy the child.  

Many children with mild autism need a different kind of therapy, they need to learn social and emotional skills they may not naturally possess - how to make friends, how to avoid making enemies and so how not to get bullied at school.  This will only be effective started very young, before being a victim becomes a badge of honour.

Interventions based on early intensive applied behaviour analysis for autistic children: a systematic review and cost-effectiveness analysis

Autism is a lifelong condition that affects how people understand the world and interact with others. Early intensive applied behaviour analysis-based interventions are an approach designed to help young (preschool) autistic children. This approach is often delivered on a one-to-one basis, for 20–50 hours per week, over a period of several years.

This project obtained and analysed the original data from studies of early intensive applied behaviour analysis-based interventions, to determine whether or not these interventions are beneficial. It also investigated whether or not the interventions represent good value for money.

The results suggest that early intensive applied behaviour analysis-based interventions may improve children’s intelligence, communication, social and life skills more than standard approaches. However, some results could be inaccurate or incorrect, and there was no evidence about other important outcomes, such as the severity of autism and where children went to school. Most studies lasted for around 2 years, which means that it is not known if early intensive applied behaviour analysis-based interventions have meaningful long-term benefits.

It was not possible to fully assess whether or not these interventions provided value for money, as the benefits of early intensive applied behaviour analysis-based interventions were unclear, although the available evidence suggested that they did not. Early intensive applied behaviour analysis-based interventions may, however, provide value for money if their effects were to last into adulthood, or if receiving early intensive applied behaviour analysis had a large impact on the type of school children attended.

Future studies of early interventions may be helpful, but should consider looking at which components of early applied behaviour analysis-based interventions are the most important, rather than at whether or not they work better than other interventions. Future studies should also follow best current research practice and evaluate outcomes that matter to autistic people and their families. 

Economic evaluation

Using National Institute for Health and Care Excellence decision rules to benchmark the results of the cost-effectiveness analysis and adopting a £30,000 (USD 40,000) per quality-adjusted life-year threshold, these results indicate that early intensive applied behaviour analysis-based interventions would need to generate either further benefits or cost savings to be considered cost-effective.

Implications for service provision

Although individual participant data meta-analyses have shown small to moderate improvements in child cognitive ability and adaptive behaviour for early intensive applied behaviour analysis-based interventions relative to treatment as usual or eclectic approaches, all of the identified studies were at risk of bias, limiting the strength of conclusions that can be drawn from these results. Furthermore, results from individual studies varied considerably, with some showing no relative benefit of early intensive applied behaviour analysis-based interventions. 

Conclusion

For cases of severe autism, if you can afford intensive (and expensive) 1:1 intervention of any credible kind (Floortime, ABA, Denver etc - whatever works best in your case) it makes sense to use it.  It should improve skill acquisition and will make the parents feel better.

None of these interventions are curative, the child will still have autism.  When you no longer pay for the 1:1 intervention, the effects most definitely will start to fade away.  Don’t mortgage your house to pay for ABA.

Nothing stops you making your own 1:1 intervention program using family, friends and volunteers.  This does not cost much and is sustainable over many years; it is likely to be much for effective that 2 years of "professional" therapy.

I do find it odd that in the US there is free early intervention for toddlers and then provision just stops, as if it suddenly is no longer needed.

If you use ABA to teach a child to tie shoe laces, he/she will retain the skill as long as you keep buying shoes with laces.  If you do not practice/apply the skill for 6 months, do not be surprised if it has to be re-taught.

Our final ABA consultant was very experienced, she worked for 10+ years in the US before moving home to Athens, Greece.  She told me that in her experience all children with autism benefit from ABA, but the level of progress they make varies widely.  If a child does not respond to ABA, it very likely is not being done correctly.  ABA should be seen as fun, not like a punishment. If your child hates ABA sessions, they have no chance of working.

I come back to my earlier recommended strategy. Find your most effective novel medical treatment, which will inevitably be a polytherapy and combine this with a method of learning that works best for your particular child.

Then just keep going and let time do its work.

In countries like the UK, with free health and education provision, the government does not generally pay for early intervention because their medical advisors do believe it to be cost effective, which really means they think it does not work and so do not want to pay for it.  The cynic might just say they do not want to fund it. 

The idea was supposed to be that by investing upfront in ABA during the early years, you save money later on, by having a more functional child and then adult who requires less expensive provision.  Unfortunately, there is absolutely no proof this is true.  

If you go from early intervention, to an ABA special school and then ABA college, things clearly did not work out.

In the US early intervention is assumed to be very effective and the current idea is that doctors should hurry to diagnose autism before 24 months so as to get into the intervention program as soon as possible.  Where is the evidence to support the US view?  Are US outcomes any better?

We saw in recent research from UC Davis that looked at outcomes over time in autism that the best outcomes are not associated with any particular therapy.  The best outcomes happen because of the biological characteristics of that child, rather than any amount of behavioral intervention.

I expected the UC Davis study to show a relative benefit for those who received ABA therapy, but it did not.  We do have to take note.  I am actually pro-ABA and have spent a vast amount of money on this kind of therapy and 1:1 instruction.   

Ignoring treating the biological dysfunctions in autism while spending hundreds of thousands of dollars on 1:1 therapy and special education does not make a lot of sense.

Here is a relevant excerpt from a recent post by the neurologist, autism researcher and autism Grandfather, Manuel Casanova, from his Cortical Chauvinism blog: -

AUTISM: HOW CULTURE INFLUENCES OUTCOMES

Despite marked differences in geography, non-Westernized countries see autism as a social responsibility rather than a medical condition.  These countries offer a collectivist perspective that downplays individuality and prioritizes maintaining relationships within a given group of people.  In this regard, I have often marveled as to how vastly different countries, like Colombia and the more desolate regions of Eastern Russia (Siberia), share similar perspectives regarding autism. Indeed, due to a lack of resources, interventions in these countries are usually parent-mediated and heavily influenced by cultural norms.  Lack of personnel trained in behavioral analysis has been supplanted by art and music instruction.  Classes are provided in group settings where outperforming other members is not seen as conductive to the overall benefit of the group. Members are encouraged to adopt the norms of the group while teachers emphasize cooperation and nurturing. Students arrive early to school to participate in team building exercises.

I have often marveled at the achievements of troupes of autistic children performing autochthonous musicals and their accompanying choreography.  Adopting the norms of the group have served them far better than any Westernized behavioral intervention.  Participants in these groups seem genuinely happy; in part, given the sense of achievement at contributing to a piece of artistic expression.  In addition, the structured activities in such groups offer norms that minimize uncertainty.  Participants feel a sense of security in a group that fast becomes their extended family.

Autism is a medical condition but, without a cause that we can target, treatment options have remained symptomatic.  This is one of the reasons for looking at other countries and learning what has worked for them.  Indeed,  I believe that we can gain from adopting the cultural perspective of other countries to benefit our own children. Whether it is an improvisation on an autism chair, electroacupuncture, or using a zen bowl, spending time with your children and group socialization, in my experience, have provided the most favorable outcomes.

Manuel is one of a very small group of thoughtful researcher-clinicians, who have been working in the field of autism for decades, like Dr Kelley from Johns Hopkins and that psychologist Dr Siegel who wrote the Politics of Autism and revealed how Lovaas really did his "research". 

Manuel's researcher son-in-law is interested in precision medicine and drug re-purposing, I guess driven by his own young son's rare genetic "autism", NGLY1 deficiency. This very severe condition leads to the body not being able to breakdown and remove damaged and misfolded proteins.  You would think that reducing Endoplasmic Reticulum (ER) stress, that produces misfolded proteins, might be useful. This was covered here, along with a long list of possible therapeutics:-

https://epiphanyasd.blogspot.com/2019/12/er-stress-and-protein-misfolding-in.html

Some readers are following the details of the Covid-19 situation.

The Indian Experiment rather than the Swedish Experiment

A recent study suggests that more than half of the 6 million slum dwellers in Mumbai have had Covid-19; another 6 million do not live in slums. Government research showed that in the capital Delhi 23% have Covid-19 antibodies.

Mumbai slums have an extremely high population density, extreme poverty and so not much social distancing. So they show what Covid-19 does with no serious intervention, better than Sweden does.  Mumbai has reported 6,200 deaths in total.

You can extrapolate from the data (57% of slum dwellers and 16% of non slum dwellers with Covid antibodies) for the total 12 million population of Mumbai.  4.4 million had the virus and 0.14% died.  In the worst case scenario, when everyone finally gets infected in the next few years, there would be another 7.4 million with the virus and another 10,800 deaths.  The death/mortality rate for the city would be 0.14%.  (In reality it will probably be less than 0.14%, because some people will not get the virus)

The 0.14% Covid-19 mortality rate compares to the 2.5% mortality rate of the 1918/9 global flu pandemic; worse still that flu pandemic affected fit young people the most, making the demographic impact huge. 

The crude death rate from all causes in the US is around 0.8% each year (just 0.7% in India).  That puts the 0.14% from Covid-19 into some perspective. If Americans are as healthy as Indians and India did not under-report the number of Covid deaths in Mumbai (both are big ifs), you could apply the 0.14% mortality from Covid-19  to 330 million Americans and get 460,000 people. I think the realistic number would be higher, given deaths to date in the US.  

I think the world has been very lucky to have been affected by a pandemic that has such a low mortality rate.  It could easily have been 20 times worse, perhaps next time?  In the Middle Ages, the Black Death killed hundreds of millions of people - a truly apocalyptic pandemic.

There is no certainty that a vaccine is going solve the Covid-19 problem, indeed the UK government is buying 12 different vaccines, in the hope that one is effective.  Vaccines are often least effective in older people, who are main risk group for Covid-19.

If no vaccine turns out to be 90% effective, the Mumbai slum dwellers and the Swedes will have been the smart ones.


Controlled Infection vs Vaccination

If I was a dentist I would be seriously worried about Covid-19. I would favor a small infection today, caught from my party-going offspring, rather than in two year's time catch it while peering into a stranger's mouth during an hour long procedure, and get a huge initial exposure, leading to a more severe infection.  The fact that Mumbai policemen, London bus drivers and of course doctors and nurses without good PPE have had so many fatalities does suggest the amount of virus you are initially exposed to is a critical factor to the outcome.  This would be logical anyway.

I am really glad at least my older son and myself have had Covid-19.  If I was a dentist, I would be hugely relieved. A few months ago we assumed Covid-19 was both highly infectious and often deadly, now we know the reality.  If you are youngish, slim and healthy the risk is very low.  Many in rich societies are old, overweight and in poor health.

I did take my younger son Monty, aged 17 with autism, for a visit to the dentist two months ago and I really felt sorry for her.  She was wearing a mask, but that is no guarantee of her safety.  

    

True Self

I could have given this post and the above graphic a fancy name like "Psycho-neurobiological model of autism", but True Self seems more appropriate.

If you have ever read a book on autism by a psychologist, it is worlds away from the books by the scientific boffins.  In reality, the psychologists have a simpler job, since they do not have to prove their theories with biological data.

One interesting observation from psychology is the concept that the human body has two parallel control mechanisms, the nervous system and the hormone system.  The nervous system mediates immediate changes, while the hormonal system sets the background changes.

When it comes to fear and stress, there are measurable hormonal changes.  Using willpower or even singing, you can make your self feel better and make a measurable change in the hormone levels.  We saw this earlier with the example of singing lowering the stress hormone cortisol, as measured in saliva.

This NIKE (Just do it!) effect means that you can directly influence your own hormones.  By inference, if you have a hormone imbalance, as seems to be the case on some types of autism, you have some powers to modulate it yourself.  You could think of it as willpower, or mind over matter. 

I suggest that even instincts may fall into this category.  Just as soldiers are taught to react instinctively, without pausing for thought, it should be possible to teach young children to develop their instincts.  The apparent lack of gross motor skills in kids with ASD can often be overcome with practice and repetition (the foundations of ABA);  in effect you are teaching the child what is instinctive in other kids.  If you through a ball at a younger kid with autism, he does not react and will let it hit him.  He does not know what to do and he lacks the instinct to either get out of the way, or to catch it.

As part of a good ABA programme a lot of time is spent practicing both gross motor skills (ball play, jumping, dancing etc) and fine motor skills.  Then you have these skills, without the need to consciously think about them.

People do ask why ABA seems to work so well for some children, is it the child? is it the therapist? it is just the sheer amount of it that matters?  They tend not to wonder what the ABA is actually doing inside the child's head.

It is relevant to this blog, which is all about the biology of the brain.  We have a pretty good idea of some of things that are dysfunctional in autism and how some emerging drug interventions work.  But at the same time, there is this behavioral intervention that seems able to overcome some of these biological deficits.

The NIKE effect (Just do it) and the AVIS effect (We try harder) are extremely potent.  In reality, they are very much part of the body's nervous control system.  In some cases this training is so powerful that instead of being derailed by interference from ion channels and oxidative stress, all that matters is completing the task.

Some typical people's headaches are also caused by ion channel dysfunction; when it happens they might call in sick.  Another type of person is more driven, the fact they have some other obligations is more important than their headache, so they just press on.



The Faucet/Tap/Valve

A conventional faucet/tap might look like this old one on the left.

A so-called "in line valve" has a pipe on both ends and as you turn it, you gradually reduce the flow to zero

If you make a technical drawing involving a valve, there are various special symbols, but they generally look like this.  Sometimes if the valve is closed it would be solid black.






Why does drug intention in autism sometimes stop working ?

We have seen in this blog that several apparently different, but interconnected, conditions seem to mediate autism, at least in some people:-

• Oxidative stress
• Neuroinflammation
• Channelopathies
• Hormonal dysfunction
• Immune system "over-activation"

So if you now look again at the True Self graphic

Oxidative stress, if present, will manifest itself as stereotypy and in the graphic it will close the valve a little blocking the true self.  In hard science, the oxidative stress will also reduce the level of the thyroid hormone T3 in the brain.  We saw this in research from Harvard that showed that the oxidative stress reduces the level of the enzyme D2 that converts the pro-hormone T4 into T3.  So both the blue valve and the green valve close.

In similar fashion both neuro-inflammation and channelopathies affect both the nervous system and the hormonal system. 

This might explain the fact that sleeping patterns, appetite, emotions, empathy, self-confidence are all sometimes impaired in autism.  To some extent, these impairments seem to be reversible.

In the only real case of autism that I have to contend with, the most important factor seems to be, the sometimes over-activated, immune system.  I am presuming it is just affecting the nervous system.  In this case, the blue valve to the left can shut completely; the Observable Self is then a totally different person to the True Self.  It also means that even though the other valves upstream may be wide open, it is all to no avail.

So when my autism drugs "stopped working" it was because further down stream there was an insurmountable problem.  Even NIKE and Avis had little effect.   

In the children for whom none of these drugs show any effect, I suspect either the immune system is involved, or in their type of autism, there are other additional factors at play.


A Note on ABA


ABA (Applied Behavioral Analysis) is not the subject of this blog, but it would be more than worthy.  When well implemented, ABA is a powerful resource and not only for small children.  The general public perception of ABA rather misses the point, it is actually more a philosophy applicable life-long.

We once had an excellent young ABA consultant trained at the New England Centre for Children, in Massachusetts.  I was surprised to hear from her about the support still being given to older adults; the adult and their buddy (ABA assistant) would even go on short trips, like to Las Vegas.

We are now using ABA to develop conversational skills.  An example is giving Monty, aged 10 with ASD, the task in break time at school, to go and initiate five conversations with the potential reward of his favourite candy.  This might sound very staged, but he goes around the school looking for kids to talk to, some of whom he has never spoken to before, initiates the conversation, looks over his shoulder to check his assistant has noticed, plays a bit and then finds someone else to talk to.  He did not take the easy option and just find the nearest five kids and say "Hi, how are you".  I was surprised how well this worked.

Later you can fade the reinforcer, so that he works for praise and not candy.  You can also gradually increase the target of five conversations.  You can then also extend the requirement to have more stages to and fro, in the conversation.  It may sound very odd to do this, but the end result will be learning to make social conversation, which would be natural in other kids.  

What people do not realize is just how much ABA is needed and that it is not just like having a music lesson, it is more like a religion.  If everyone who interacts with the child consistently applies the principles, much can be achieved.  If ABA is just a lesson the child goes to and then comes home, it is not a surprise that very much less is achieved.

If you talk to the parent of a child who has persevered with ABA for years, you will see just how committed they became.  If you prefer sport as an analogy, it is just like a would-be professional tennis player, who practices every day from the early hours.  It is an obsession, but if you want to compete at a high level, you just have to do it.

Where we live there is no ABA school, but there is a Novak Djokovic tennis academy, in fact they came to visit Monty's school last week.  I think Novak would definitely understand the NIKE and Avis effects, he probably would not think ABA was odd at all.









 

Ambitious about Autism? All roads lead to Las Vegas

There are many odd things in the world of autism. One is ABA (Applied Behavioral Analysis), the gold standard therapy in North America, where it is seen as evidence-based.  In the rest of the world there is very little ABA and that same “evidence” is not seen as conclusive.

Raymond in Las Vegas with his “assistant” Charlie

In the US, Federal Government funded very early intensive intervention is available to anyone under three years old with an autism diagnosis. The “evidence” shows that such very early intervention can change the outcome.  But why stop at three years old? What is magical about 36 months of age? After this age some people continue to get intensive intervention and some do not; it all depends where you live and who wants to pay.

If the evidence is so strong that very early intervention is so effective, why do rich European countries leave it to far older than 36 months to even diagnose autism?

Much does not add up in the world of autism.

Personally, I am a fan of ABA as a teaching method, but only when done in a fun way, which is how our US-trained Behavioral Consultants practised it. Lots of high fives, “good jobs”, smiling faces, tickling, dancing and generally a good time; no tears and no stress.

I cannot see why you would stop your intensive intervention so soon after starting it and I really doubt you make a life-changing difference very often, by 36 months of age.

One of our Behavioral Consultants came from the New England Center for Children and I recall asking her, “so when do you stop with your therapy?” She told me that they have people in their 60s still in therapy and they might go on a trip with their assistant to Las Vegas (yes, just like in Rain Man).   

There are many special schools in the US using techniques like ABA. Because of the high ratio of staff to pupils, these schools are very expensive and somebody has to pick up the bill.

In Europe there are very few ABA schools, one of the first is called Tree House and was established in London.  It was set up by a charity called Ambitious about Autism.  This school is very expensive and the idea is that the municipal authority where you live is supposed to pay the fee for you. This would come out of their budget for special needs kids, so the more money they spend on such private schools the less money there is left over for the kids with less demanding parents, who do not advocate for their kids.

Anyway, I recently came across the fact that Ambitious about Autism has gone a step further and now runs Ambitious College for people up to the age of 25.

This made me wonder if you go to the ABA school from 4 to 18 years old and then go to the ABA college until you are 25, when does it end? Perhaps with a trip to Las Vegas? 

ABA as a treatment or a teaching method

While I see ABA as a (highly effective, in the right hands) teaching method, the ABA specialists put if forward as a proven treatment, meaning you should get better. 

Ambitious or Realistic?

When treating a three year old with autism I think you have to be ambitious, optimistic and hopeful.

At some point I think you need to be realistic.

Day care and activities for young adults with severe autism is a great idea. Including them in activities with non-autistic people would be even better.

With people living longer there are many activities for retired older people, which are entirely suitable for adults with (non-violent) severe autism, or indeed with Down Syndrome.  Why can’t the 25 year old with severe autism play table tennis with the 70 year old retired teacher and go to the same keep fit class?  Last year Monty, aged 14 with ASD, was in Shanghai and when he saw a large group of older Chinese people doing their group exercises in a public park; he joined in. Everybody enjoyed it. 

I am not sure creating a “College” for people with severe autism is helpful. Helping people with autism go to a regular college, by giving them an assistant, is a good idea.

If it really is day care, why not call it day care?

If it is about preparing for life in the real world, what was happening at the ABA school from 4 to 18 years old?

ABA Strikes Again

This blog is mainly about clever pills and potions that may improve some people’s autism, but I do like to remind people of the power of behavioral interventions.

Monty, aged 11 with ASD, has had three behavioral consultants since we began his home ABA program when he was aged about four.  Since there are no ABA consultants in our part of the world, we have to fly them in.  We have our local therapists/assistants, who then work with some support from the foreign consultant.  The net result is a mixture of approaches, which admittedly becomes more “ABA” when the consultant comes to visit.  We now have a vast collection of ABA books, manuals and training materials.

Last week our excellent American-Greek behavioral consultant came for a two day visit and so it was a good opportunity to look at progress.

Monty went to the airport to wait for her and then we went home for some discussions and Monty showed off his piano playing.  Later everyone went out to a pizza restaurant; all went well and Monty quietly devoured his full-sized margarita pizza.

The next day the consultant went to school with Monty and his assistant, to see how things are handled there.  The last time she came, she pointed out that there was little interaction with the other kids.  Now things are much better in that area.  In class, she noted than he can now sit attentively and follow much of what the class teacher is saying/doing.

Then back home to see Monty’s afternoon home program with his other assistant.

Another school visit the next day and the visit was over.  Now we wait to find the suggested items to work on at home, as we work our way through one of the ABA bibles, which in our case is:-

Behavioral Intervention for Young Children with Autism

We have lots of other material, but we still often use this book.

Academically and socially we have moved on a fair way since the last visit.  Back home our consultant runs more intensive clinic-based ABA programs and she was wondering out loud how come we are making all this progress.

“Our other kids have six times as much intervention”; I am not sure exactly how the six figure was picked, but I do get her point.

Near the end of the visit she did ask “are you giving him any drugs?”

The answer was “yes, but not any ones you will have heard of”.  I did then give a brief explanation of my "extra-curricular" activities.

I have learnt it is best not to mix messages with different audiences.  ABA people are great, but do tend to think nothing else can help.  Equally, people convinced that the problem is candida or vaccines, have also already made up their minds.

It is, of course, not a good idea to compare one child with ASD’s performance against another, but everybody still does it.

It looks like the kind of people our consultant works with now and encountered at a leading center in the US, where she trained until 10 years ago, are generally more affected by autism than Monty.  Most of the people I read about today with “autism” (mainly from the US) are clearly much less affected than Monty.  This does rather suggest that what passes for “autism” there has really changed a lot in 10 years.  Now that Asperger’s has ceased to exist in the US, under their latest DSM, this process will continue yet further.

Conclusion

My conclusion is that ABA works great and so does the Polypill.

Hopefully, next time we go to the airport to meet our ABA consultant, or even drop by her in Athens, we will again have moved forward nicely.

For now everyone is happy.

Wombles and Music Therapy for Autism

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Instead of giving you my rather heavy post about epigenetics and autism, today’s post is much more down to earth.

Medical opinion in North America has long been very much in favour of ABA (Applied Behavioural Analysis) as the only “scientifically proven” therapy for the core symptoms of autism.

This evidence is actually quite flaky, so much so that in the very "evidence driven" United Kingdom, their highly regarded National Institute for Health and Care Excellence (NICE) does not even mention ABA, let alone endorse it, in their guidance note in how to manage autism.

The management and support of children and young people on the autism spectrum

ABA is a potent tool to manage autism and provides a flexible framework to teach people who do not respond to traditional teaching methods.  However, it is no cure for autism and the old studies suggesting that almost 50% of kids going to an intensive ABA program will lose their autism diagnosis after two years are nonsense.  They just serve to over-extend the expectations of parents entering ABA therapy and increase guilt among those not able to afford it.

All of our ABA consultants to date have agreed with this view.  In highly intelligent kids with mild autism, maybe 50% can improve so far to lose their diagnosis; but maybe they would have done so after two years without ABA?

Selective interpretation of evidence

A therapy that is sometimes included alongside swimming with the dolphins, as being non-evidence based, is music therapy.

Music and dance is used extensively with many typical kids of kindergarten age, mainly as a fun activity.

I myself would have previously thought that was all there was to it.  But after several years of observing the effect of lots of music on Monty, aged 11 with ASD, there really is much more to it.  

Monty’s original assistant was (and remains) really into music, and so he had lots of music and dance from a very young age.  A few years later we bought a piano and he started piano lessons.

It appears that for some people, singing is easier than talking, or perhaps it is that music encourages communication.  We saw in a post long ago that singing lowers your level of cortisol, the stress hormone. 

Music (and dance) appear to unlock something deep within. (Perhaps the music gene)

Who are the Wombles

The Wombles are furry inhabitants of a burrow on Wimbledon Common in London, England.  They live by collecting up and reusing all the rubbish humans leave behind.

The Wombles were created by British author Elisabeth Beresford, and originally appeared in a series of children's novels from 1968. A stop motion animated series of five minute episodes was made between 1973 and 1975.  A new TV series, with CGI animation, is in production, along with a movie.

Wombles on Sunday Morning

Last Sunday morning, when half the house was sleeping, Monty was sitting in the kitchen with his iPad; then he selected his Wombling song on Youtube.  He then started singing his own mixture of the original lyrics and his creation, at full volume.  Listen a bit harder and he was singing in two languages.

Given most kids with classic autism really struggle to communicate, this is quite remarkable and light years ahead of where he used to be.

I am a convert to both ABA and music therapy, but I do not think you can prove the effectiveness of either.  Anecdotal evidence, but lots of it, is as good as it can realistically get.

The moral of the story is that if you set the bar too high, you will reject valid therapies alongside all the quack therapies. 

Also, you may have to persevere for a long time to kindle that interest in music; but as our ABA consultant commented recently, the biggest problem her older clients have, is that they have nothing to do – no hobbies, no interests.  Keep up with those lessons.

  

Education and Autism

This blog mainly concerns personalized medicine, which is a therapy targeted to a specific person, or sub-group.  Personalized medicine can include drugs, OTC supplements, diets and, importantly, non-drug medical therapies like vagal nerve stimulation.  Some non-drug medical therapies were covered in previous posts and others will be covered in future posts.

The other part of the bigger puzzle can be called personalized education; anything from ABA to music therapy to what you do at school.

Eleven years ago, when starting with our first ABA consultant, just about his first question was “are you following any special diets or biomedical therapies”. He was clearly against such therapies, seeing them as a big distraction from the all-important ABA and Verbal Behavior (VB).  He did indeed have a point, you do have to focus your attention on multiple tasks and avoid being obsessed with vaccines, gluten or candida, as some people appear to be.

ABA does have its limits, as our first ABA consultant found with his own son. In the case of severe autism it may well help a lot, but it usually is not enough. Rather ironically this ABA consultant eventually came back to me years later to ask about personalized medicine.

Some people report terrible experiences with ABA and, if these are genuine, I think there must be some terrible ABA therapists out there. We had very positive experiences with ABA consultants and our home-trained therapists. 

Education

In the case of Monty, aged 15 with autism, he started with very personalized education and only much later, at 9 years old, did we add personalized medicine.

It is pretty clear than in cases of severe autism you need all the help you can get and so as to achieve a  relatively good life (the palm tree by the beach, in the above graphic); you need personalized education and personalized medicine.

Education of typical children

For some years I was a school governor at an international school and so I got to know many different teachers, different educational systems and curricula.

When schooling kids with autism the choice is normally between mainstream school, special school or home schooling. In some countries home schooling is illegal.

Mainstream schooling varies greatly from country to country. Most active autism parents seem to be North American and they likely do not realize how lucky they are to have a pretty easy school curriculum, which lends itself to less able learners.

In some other countries the standard of maths and science is very much higher and school is really geared up to benefit the most able. Anyone of average ability, or below, very often gets left behind.

The level of selection in schools is also important and highly variable. In some countries kids get separated at age of 10-12 into those who are expected to do well and becomes doctors/scientists/ lawyers and those who will end up with vocational training rather than a degree.

In other countries you get a genuine mix of abilities all the way up through high school.

Poor Learners

I had a visit recently from a friend of mine who runs an organisation in Austria that tries to attract top achievers from university to spend two or more years teaching in the country’s worst performing schools, before starting their intended high-flying careers. It is part of an international group doing the same thing across the world. They seem to be doing well and the schools perform much better with their energetic young teachers.

What was interesting to hear was just how bad the standards are at some of these schools.  A significant minority of 12 years old kids are functionally illiterate. One reason is that they have many immigrant children who do not speak German at home, did not speak German in Kindergarten and now sit in a class that is 80% non-native German speakers. The end result is that they cannot write a sentence in German, even though they might have lived all their life in Austria. So much for inclusion/integration.

Interestingly, my friend told me that in Austria, almost no one knows that Hans Asperger was an Austrian.  I did not mention that some Americans are worrying about whether Asperger was a Nazi.  Andreas Rett, another Viennese doctor, whose name was given to Rett syndrome by the English-speaking world 17 years after he described it in the German literature, is another forgotten Austrian. Rett actually was a Nazi, so I suppose some people will want to rename that syndrome, when they figure this out. Leo Kanner was really Austro-Hungarian, being born in Lviv. Kanner was Jewish, so definitely not a Nazi. So many Austrians connected to autism and yet nowadays the German speaking world contributes almost nothing to autism research. I will leave you to draw your own conclusions.

How Austria can restore its status as a center of autism research

Back to education.

The top performers educationally are usually Singapore, where they practice old-fashioned education and Finland, where they follow a very enlightened non-pressurizing Scandinavian approach and where school starts at 7 years old.

The maths curriculum and the workbooks from Singapore are widely used by home schoolers around the world and I bought them for my son. 

A suitable learning environment for someone with severe autism

In many developed countries education authorities believe that children with severe autism can be educated in both mainstream classrooms or in special education.

Given just how variable mainstream education is, we should not expect consistent results. For some children inclusive education will work well and for others it might be a disaster.  A lot depends on what you are being included into and you have to be “includable”.

Small classes, with up to 12 kids, that include all abilities and only one special needs learner give the best chance of success, in my opinion.

Classes with 30 kids including 2+ special needs learners are a recipe for failure for all 30 kids.

Special education varies from large groups and a single teacher in some countries to tiny groups and where each child also has their own 1:1 assistant. There is no normal or typical special school.  There are some very good special schools in the United States, but they must cost someone $100,000 a year.

Home schooling is only as effective as how good the “teacher” is.

Parents need to think long and hard about how to educate their child with severe autism and not assume the State will provide them a perfect solution.  The better the education is for typical children, the greater chance you have of good special needs provision. Not surprisingly, special education is good in Scandinavia and terrible in most poor countries.  One of Monty's assistants moved to Norway to be a special needs teacher.

Some people with severe autism will struggle to learn anything, anywhere. These people need personalized medicine or else their 15-18 years spent in “education” is just day-care and a prelude to institutionalization, perhaps with a nice name like a group home.                                      

Personalized Education combined with Personalized Medicine

At the age of 8, after 4 years of intensive ABA-inspired intervention, Monty could not grasp the simplest elements of maths; I mean single digit addition or subtraction using the number line. Language and cognitive function appeared to be immovable barriers to progress.

December 2018 marks six years after starting personalized medicine, and I just learned that Monty’s grade for Maths this term is B+. He could handle the algebra and trigonometry in the end of term test, without any prompting from his assistant.

The addition of personalized medicine has had a transformative effect on cognition.  This continues to surprise people even now. 

Equally encouraging is that Monty has taught himself to swim "properly", he has long been confident in a pool or in the sea, but now at school they go to swim in a full sized pool and get timed swimming laps. Today he was the fastest of two combined classes, that is something else that would not have been expected. 

One autism Grandad we know regards Monty as "80% fixed", but "some problems will always remain"; that is quite a nice summary. It is all relative to what you know, this Grandad only knows really severe autism.  I think many of the parents of the 1 in 40 now diagnosed in the US with "autism" would regard Monty as far from "fixed", but then their kids are fully verbal and have few challenges.  

People with severe autism inevitably plateau at a low cognitive-equivalent age, but it does not have to be like that, if you can treat the underlying biology.  

If you start by treating the biology and fine-tune brain function to the extent that is possible, then you should benefit greatly from all that costly personalized education, that you may or may not get someone else to pay for.

Conclusion

If you have a child with severe autism, life may become a huge challenge. There are all kinds of horror stories you can read about - I suggest you do not dwell on them.  Everyone has options, whether to rely entirely on what you get for free from the State, or whether to apply other methods.

In a resource unconstrained situation, the best outcome is likely to come by combining personalized medicine with personalized education. I can only say that this combination has worked well for us.  In terms of money, it has clearly cost much more than having a typical child, about twice as much. 

If money is tight, start with personalized medicine.

People tend not to put a value on time, but for many time may be the greatest cost. You typically cannot leave a person with severe autism unattended and if they have a complicated schedule, somebody always has to be there and to be able to step in when something gets cancelled, or someone is off sick. 

Until the 1970s, medicine did have a strategy for people with severe autism. It was diagnose, institutionalize as a young child and forget. The Germans added their own variant to this.  Having shut down all the big residential hospitals for mental conditions, there is now often a big gap in provision.  Where do you put adult-sized people with severe autism?  It may not be a problem for those who are docile, but what about those who are not?