Showing posts with label ABA. Show all posts
Showing posts with label ABA. Show all posts

Tuesday 29 September 2020

Is the Door about to Close on Alternative Medical Treatments for Autism in France? Plus, more on Dravet Syndrome and RIP Charlotte Figi


I was talking to the organizers of an autism conference in the US and one question that came up was, do I know a clinician who prescribes potassium bromide (KBr).

It is a question that illustrates the problem in treating autism. In Germany, Austria and some neighbouring countries KBr is an established treatment for pediatric epilepsy and particularly some specific conditions like Dravet sydrome. Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy which begins in the first year of life.  It is one of those conditions where parents in the UK are begging to use cannabis. Dravet syndrome may be accompanied by an autism diagnosis.  In the US KBr is currently only used for canine epilepsy.

Regular readers of this blog may recall that Dravet syndrome responds to potassium bromide (KBr) and should respond to low dose clonazepam (it works in the mouse model).

I proposed KBr as an autism therapy and even found an “autism” case history from 150 years ago. KBr was the only effective therapy for epilepsy back then, so a child with epilepsy and severe autism might be lucky and get KBr prescribed, as in the case history I highlighted.  It worked well for that little girl and she developed the ability to play appropriately with a doll - that is what caught my attention.

Is KBr a widely used autism therapy in Europe?  Definitely not.  Only a handful of people use it for autism, but it is an approved safe therapy for pediatric epilepsy.

KBr will have a similar effect on GABA as bumetanide, but via a different mechanism, (some Cl- gets replaced by Br- inside neurons, this lowers the Cl- concentration and so changes the effect of GABA).

The drawback with KBr is bromo-acne, or spots.  I suppose if your child has Dravet Syndrome, or very severe autism, you will not be bothered by some spots. 

150 years ago they used a potion containing arsenic to treat the spots, this was a very bad idea. Arsenic is poisonous.

Charlotte Figi, who was the inspiration for the popular medical cannabis strain called Charlotte's Web, had Dravet syndrome. She died this year, aged 13. 

I am told that you actually need some THC, rather than just CBD (cannabidiol), to be effective, but over time Charlotte’s commercial product contained less THC and I am told lost its effect.

Stiripentol, a positive allosteric modulator of GABAA receptors, is an approved therapy to treat Dravet Syndrome. 

Dravet syndrome is usually caused by the ion channel Nav1.1

You might wonder why does a sodium ion channel cause a defect in GABA signalling.


Delayed maturation of GABAergic signaling in the Scn1a and Scn1b mouse models of Dravet Syndrome

We found that GABAergic signaling remains immature in both DS models, with a depolarized reversal potential for GABAA-evoked currents compared to wildtype in the third postnatal week. Treatment of Scn1b−/− mice with bumetanide resulted in a delay in SUDEP onset compared to controls in a subset of mice, without prevention of seizure activity or amelioration of failure to thrive. We propose that delayed maturation of GABAergic signaling may contribute to epileptogenesis in SCN1B- and SCN1A-linked DS. Thus, targeting the polarity of GABAergic signaling in brain may be an effective therapeutic strategy to reduce SUDEP risk in DS.


SUDEP is Sudden Unexpected Death in Epilepsy and this is what is likely to occur in about 1 in 5 children with Dravet Syndrome. These deaths would appear to be, to some extent, preventable if you read the science and apply it.

This takes me to France where well-intentioned Autism Moms/Mamans are seeking to rein in 50 French doctors thought to be prescribing autism therapies off-label to 5,000 children.

Are these crazy therapies? or beneficial therapies? or perhaps a mixture of both?  For sure they are unorthodox therapies.

Olivia Cattan thinks French Moms/Mamans should be using behavioral methods (ABA, TEACCH etc) because they worked well for her young son.  Her charity, SOS Autisme, is trying to stop French doctors treating other people’s children with autism. 

The same thing happened a few years ago in the UK. A lone UK doctor was prescribing drugs to children with autism, word spread and other doctors reported him the medical regulator, who banned him from seeing patients with autism.

The US is the Wild West by comparison – anything goes.  A doctor can tweet "vaccines DO cause autism" and there are no consequences. Today, governments around the world are buying up future Covid-19 vaccines for their citizens and one factor in agreeing the price is whether the government indemnifies the producer for legal claims due to vaccine side effects. Rare side effects are possible even with a "good" vaccine.

I did ask Dr Frye about MAPS doctors getting into trouble with the authorities.  He told me the big issue is the occasional divorced spouse who objects to a child’s therapy.

France probes doctors prescribing antibiotics for autism

French prosecutors said Thursday that they had opened an inquiry into dozens of doctors prescribing antibiotics and other drugs as a purported treatment for autism in children, potentially endangering their health.

French prosecutors said Thursday that they had opened an inquiry into dozens of doctors prescribing antibiotics and other drugs as a purported treatment for autism in children, potentially endangering their health. The investigation comes after an alert by France's ANSM medicines watchdog that doctors were prescribing long-term courses of antibiotics and drugs against metal poisoning to autistic children. According to Olivia Cattan, who heads the help group SOS Autisme and has written a book on the practice, some 50 doctors in France are thought to be treating up to 5,000 children this way. Such prescriptions have been linked to controversial ideas from Nobel Medicine Prize laureate Luc Montagnier, honored in 2008 for his co-discovery of the virus that causes AIDS, but frequently dismissed by the medical community for his unconventional ideas in recent years.

The Paris prosecutor's office said its public health department has been entrusted with the probe into charges of "endangering the lives of others" and "offences related to research involving human beings." On Tuesday, the ANSM said it had referred the matter, flagged by Cattan, to prosecutors after collecting evidence including parents' testimony and prescription sheets. The watchdog said the children were prescribed antibiotics, anti-fungal, anti-parasitic or anti-viral drugs, as well as treatments for heavy metal ingestion that are normally reserved for use in case of poisoning. The ANSM "formally advises against these uses, for which these drugs have not shown to be effective and which put these children at risk, particularly with prolonged use." Effects can include digestive, cardiovascular and skin disorders, while misuse of antibiotics can lead to drug resistance that undermines the effectiveness of future treatments. The ANSM has also alerted French doctors' and pharmacists' associations. 

According to SOS Autisme:-

L’autisme n’est pas une déficience mentale, ce n’est pas une maladie, ce n’est pas une fatalité, et cela peut toucher tout le monde.

Aujourd’hui, grâce aux méthodes cognitives (ABA, Teach, Feuerstein, Pecs…). tous nos enfants peuvent progresser et devenir des êtres autonomes, des citoyens qui fondent une famille et qui travaillent.


Autism is not a mental disability, it is not a disease, it is not a destiny, and it can affect anyone.

Today, thanks to cognitive methods (ABA, TEACCH, Feuerstein, PECS ...). all our children can progress and become independent, people who start a family and who work.


The highlighted part in yellow would be great if this was true, but it is not.  Tell that to the Paris Prosecutor.

All these behavioral therapies can help, but go and look at autistic people born in the 1990s in the US, who had rich parents and who used ABA, TEACCH, PECS etc, for two decades.

Are they all now independent people who started a family and who hold down a meaningful job?  No.

Sadly, they are either still living at home with Mom and Dad, or they got packed off to live in a group home, or some other sheltered living accommodation. Life expectancy is short and parents are likely to outlive their child.

If you want to know autism reality to adulthood, go and talk to old hands with no vested interest like Catherine Lord, Bryna Siegel or even Manuel Casanova. 



There are many obstacles to treating and educating a child with severe autism and this is clearly reflected in the outcome in adulthood.  

Where you live can matter much more than how much money you have.

Yes, there are some crazy sounding autism therapies.

Yes, there are some people seeking to make a lot of money out of gullible parents.

Yes, there are labs overcharging for "special" diagnostic tests.

But, that is not the complete picture.

There are also some therapies that might look bizarre to a lay person, but if you read the science, they are very well founded.  They are experimental therapies.

The risks of not treating severe autism are huge; death due to seizures, drowning and accidents are very common and according to the Karolinska Institute such people have a life expectancy of under 40 years.   Too many continue to die in childhood. 

I am no fan of DAN doctors, but it looks like only one death has ever been associated with their treatment.  In 2005 a British boy was given intravenous chelation in a clinic near Pittsburgh; he went into cardiac arrest and died.

The French lady behind SOS Autisme is a big fan of ABA and I hope her son is fully functional when he reaches adulthood. Most children with severe autism become adults with severe autism, regardless of how much ABA therapy they receive, they are just more functional. Their life has no fairy tale ending.

For a transformative effect on outcome, you have to address the biological problems.  By all means, combine this with whatever educational therapy works for the child.   I am also a fan of ABA, but a realistic one; I continue to see its benefits. But, no amount of ABA could teach my son even basic mathematics, I know, I tried it to the age of 9.  Now he can do algebra and solve equations, sometimes better than his NT classmates. I am delighted to contradict SOS Autisme - autism is a mental disability and it is a disease, but it is treatable. 

Personalized therapy / precision medicine does not lend itself to clinical trials with thousands of participants, by definition you are treating a rare combination of dysfunctions. 

The important thing is that personalized therapy must be both safe and effective.

No progress without some ruffled feathers.




Monday 3 August 2020

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.

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. 


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: -

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:-

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.  


Friday 26 January 2018

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?

Sunday 20 September 2015

A New School Year – Still keeping up

Before I return to the science-heavy posts, this is another post to encourage people not just to read about autism, but to treat it.  No pseudoscience or great expense is required.

After close to three years of using biology, rather than just behavioral therapy, where have we got to?

Acquiring new skills is effortless for clever typical kids; we have also got one of those.  For kids with classic autism, even the most basic skills need to be taught and taught again, until eventually, they might sink in.  I do not think this has anything to do with permanent MR/ID (mental retardation/intellectual disability), although I can see why it often gets diagnosed as such; it turns out to be treatable.

In the race to keep up with the typical kids, or at least keep them in sight, we started with ABA and about 1,800 hours a year of 1:1 time with an assistant.  After a few years the typical kids had pulled far ahead.

At age 9, I started to correct the underlying dysfunctions, first with Bumetanide, using very recent findings in the scientific literature.  This coincided with the decision to change his (neurotypical) peer group at school to those 2-3 years his junior.  Time was reset.

We still had the 1,800 hours a year of 1:1 time with an assistant, half at school and half at home.

At age 12, the original peer group is now far out of sight, but after three years we are still keeping up academically with the new “friends at school”.

Monty, now aged 12 with ASD, is in the same small mainstream international school he has attended for eight years.  Three years ago I held him back two years, since he was becoming completely “un-includable”.  So we went Year 1, Year 2, Year 3 then back to Year 2, then Year 3, Year 4 and now Year 5. 

Since most readers are American, where school starts one year later, to convert UK school year to US grade, just subtract one.  UK Year 5 = US 4th grade.  In the US you finish in 12th Grade whereas in the UK system you finish in Year 13, both typically in your 18th year. (so in the US system, he went K, 1st, 2nd, then 1st, 2nd 3rd and now 4th)

Many kids with autism are now “included” in mainstream education, but in reality some are just having a private 1:1 lesson with their assistant at the back of the class. This is not a good idea; for the last three years Monty has been able to follow the teacher.  If you cannot follow the teacher, you really should not be in that class.

We have a new class teacher, an American, he has been teaching for 15 years, but has never had a special needs kid before; that in itself tells you something.  Now he has Monty, aged 12 with “treated” classic autism, something he probably will never see again.

After a couple of weeks, his conclusion is “he can read nicely and do the exercises”.  This makes it sound rather a non-event.  A few short years ago, his school teachers were rather stunned that his 1:1 assistant got him to read very simple words.  Now he can read aloud from “chapter books” to the rest of the class.   

When they had a spelling test (words like graduate, icicles, sausages) he got 18/20 and one of the new girls in class told her mother how clever Monty is.  When told he has “special needs” and an assistant, she replied “special needs … no special needs”.  That was nice, but Monty does still have plenty of special needs, but for three years he has been able to move forward academically at a similar rate to his classmates, albeit that they are all 2 years his junior.  That progression is quite extraordinary, if you know about outcomes in classic autism. 

Having been using ABA for five years prior to starting with the biology/pharmacology, and seen steady but slow progress and so falling ever further behind his peers, I never expected to be here in 2015 with Monty being able to subtract 7,794 from 9,621, or add up 8,756 + 4,326 + 7,832, interpret data from graphs and use x,y coordinates.  Until five years ago he did not even attend numeracy/math classes at school, because we had to focus on basic speech, basic reading and things like standing in line and changing shoes.

I have no idea how far he can go. I was expecting by now to again have to repeat a school year, but it has not been necessary.

Behavioral problems (SIB, anxiety, aggression etc.) were generally rooted in biology and have been more than 90% treatable.

With neither behavioral, nor pharmacological intervention, it would not now be a pretty sight.

It is sad that almost nobody treats Classic Autism pharmacologically; there are so many unnecessary, unhappy, consequences, lives sometimes lost to what can be a treatable condition.

It also appears likely that by treating the dysfunctions in Classic Autism, you may avoid the possible later progression to epilepsy/seizures and all the problems that may cause (even SUDEP, drowning etc).  This was something we had been warned might develop, but now looks much less likely.  For some people, seizures are a bigger issue than their autism. Some data, for those interested:-

This is among the largest studies to date of children with ASD and co-occurring epilepsy. Our sample includes 5,815 participants with ASD, 289 of whom had co-morbid epilepsy. Using statistical modeling in this well-powered sample of patients we have made several important observations about a contemporary group of individuals with ASD and epilepsy. We identified several correlates of epilepsy in children with ASD including older age, lower cognitive and adaptive functioning, poorer language skills, a history of developmental regression, and more severe ASD symptoms. Through multivariate logistic regression we found that only age and cognitive ability were independent predictors of epilepsy.

The average prevalence of epilepsy among children aged 2 to 17 years in our population-based sample, the NSCH, was 12.5%. This estimate is comparable to a recent report of a 15.5% rate of epilepsy in another population-based sample of children with ASD. While the prevalence was 10% or lower in children under 13 years of age, by adolescence it reached 26.2%. Therefore, the best estimate of the cumulative prevalence of epilepsy in ASD through 17 years of age is 26%. Our study replicates findings from prior studies that have followed children with ASD into adolescence/early adulthood and reported epilepsy prevalence rates from 22% to 38%

Note that Classic Autism accounts for about 30% of ASD; it is not hard to guess where you would find most of the 26% with ASD who later develop epilepsy.  

Odd epileptiform activity (seen on an EEG), falling short of epilepsy, is common in young children with autism and I think might be considered as pre-epilepsy.  Just as someone who has prediabetes has the chance to do something about it, before it progresses to type II diabetes, unusual EEG activity should prompt consideration of a treatable excitatory/inhibitory imbalance. 


At least I have treated the only autism case I am responsible for. I encourage others to do the same; it is never too late, even in adulthood.  We have one reader, Roger, who got his core biological autism dysfunction diagnosed and treated in adulthood.

If you prefer to wait for 100% FDA-guaranteed solutions, you will wait forever.  

Thursday 22 January 2015

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:-

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.


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.

Saturday 5 April 2014

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.