Most of what you can read on the internet regarding autism is parents writing about their young children, or alternatively middle-aged Aspies with their very diverging views (either self treating on Reddit/Longcity, or campaigning for no treatment at all, for anyone).
I don’t delve into Facebook and its often closed groups, that some people now want banned. Google has closed Google+, which did carry this blog.
Since teenagers and adults also have autism, you might expect them also to be a common topic. They are not.
Did the parents just run out of energy? Most likely the case.
Autism blogs do seem to just stop abruptly, rather than fade away gradually.
Hope springs eternalThe reason put forward for the mass use of ABA, but almost exclusively only in North America, is that parents really want to do “something”. ABA is "evidence-based", expensive, time-consuming and often you have to fight for it, so it ticks all the boxes.
As Agnieszka pointed out, it is shocking that all this ABA is based on much-quoted research that is well known to be fundamentally flawed.
But parents of toddlers want hope. Don't spoil it for them.
Over the next 10 to 15 years of parenthood, parents will adapt and get used to their new normal.
Along comes the next generation of parents and the story repeats. You would hope that things are getting better, but did anyone bother to check? By constantly broadening the clinical definition of autism since 1980, it is easy to paint a rosy picture that may be far from the reality.
It would be great to hear the experiences of parents of adult children, diagnosed with autism when they were 3 years old in the 1980s and 1990s, particularly of those living in parts of the US where autism interventions were advanced (California, New England etc). Was ABA effective? What happened at school? What happened at the dentist? What about tying shoe laces, riding a bike - was it ever mastered? Who learnt to drive? Who got a job? What about supported/sheltered employment? Who lives independently? Who lives in an institution? Who lives with parents? Dare I ask it, but what percentage are still alive?
It would be great to hear the experiences of parents of adult children, diagnosed with autism when they were 3 years old in the 1980s and 1990s, particularly of those living in parts of the US where autism interventions were advanced (California, New England etc). Was ABA effective? What happened at school? What happened at the dentist? What about tying shoe laces, riding a bike - was it ever mastered? Who learnt to drive? Who got a job? What about supported/sheltered employment? Who lives independently? Who lives in an institution? Who lives with parents? Dare I ask it, but what percentage are still alive?
Severe autism continues to be seen as the childhood condition it genuinely was until the 1970s, when big State Mental Hospitals gradually stopped being the repository for young children with autistic behaviors. People entered as a child and never left. You could only encounter very young children with severe autism (then officially called childhood schizophrenia), unless you worked in one of these institutions, where older children and any surviving adults remained. In modern times adults with autism are again nearly always Aspies, the severely affected have again been hidden away.
In the 1970s physicians still had to apply DSM2, published in 1968, where there was still no autism category, it was considered childhood schizophrenia.
Autism first appeared as a diagnosis in 1980 in the first version of DSM3, you needed to satisfy all six points:
A. Onset before 30 months of age
B. Pervasive lack of responsiveness to other people
C. Gross deficits in language development
D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal
E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects
F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.
Outcomes in severe autism often are not good
It is much better to see things as they really are, from day one, not to have false expectations and realize that, while much is possible, it is up to you to make things happen, otherwise the result will not be pretty.
But, people do not want to hear sad stories, however real they are.
They want to read uplifting stories like the New York Times best-seller, "The Reason I Jump". This book is claimed to have been written by a young non-verbal Japanese boy, by pointing at letters on an alphabet chart. Many people, like Dr Siegel in California, believe it was really his mother’s work.You can choose whichever version you prefer.
The Japanese handwriting system is extremely complex, with tens of thousands of characters, but all Japanese also learn Romanized Japanese which is used for computer inputs.
It would clearly be possible to establish if the author was Naoki Higashida, or his mother; most people would prefer to believe it was Naoki.
If today he writes his subsequent books alone in a room with his computer, or indeed a pad of paper, we would have the answer. If Mum/Mom has to be present in the room, I would have my doubts.
Ten years ago I used to buy ABA books and resources from a company in New York set up by an Autism Mom, who had struggled to locate the resources her adopted daughter with autism had needed. It still is a great one-stop-shop and the Mom is still a big believer in ABA, but her daughter went from living at home to a group care home, not the result she or her eager Lovaas-evidence-based new customers were/are hoping for.
The Mom does say that thousands of her customers have kids who were eventually "mainstreamed", but what does that tell you? I used to think that only quite functional kids were mainstreamed and only severely affected kids got special schools. In reality you have kids who cannot use the toilet mainstreamed and some very smart kids with Asperger's who have their own school. Whether a child is mainstreamed or in a special school depends mainly on what the parents want and where they live; the child's severity of autism has remarkably little to do with it.
Our last ABA consultant told us that Monty, the client she sees the least, is the one who improved the most. That is of course a nice thing, but I wanted much more for Monty. Put another way, ABA was good and remains good, but it is not enough.
Lovaas grossly exaggerated the improvement that is likely in severe autism (DSM3 autism/SDA). He excluded data from non-responders in his published results. This approach evidently continues to this day in some other autism studies I have read.
Kids with mild autism do not need intensive ABA with picture cards, it would be a huge waste of time and money. ABA principles can be applied to teaching emotions, empathy and other social skills to young Aspies.
Where do children with severe autism end up?
With all that Lovaas ABA behind them, these children were supposed to have become fully functional adults. Invest $200,000 in ABA in early childhood to save millions in future care costs; that still is the mantra in 2019.
Unfortunately, even after all this expense in childhood the end result still most often requires very expensive lifelong care provision, or the adult just stays at home with his aging parents.
Ten years ago I used to buy ABA books and resources from a company in New York set up by an Autism Mom, who had struggled to locate the resources her adopted daughter with autism had needed. It still is a great one-stop-shop and the Mom is still a big believer in ABA, but her daughter went from living at home to a group care home, not the result she or her eager Lovaas-evidence-based new customers were/are hoping for.
The Mom does say that thousands of her customers have kids who were eventually "mainstreamed", but what does that tell you? I used to think that only quite functional kids were mainstreamed and only severely affected kids got special schools. In reality you have kids who cannot use the toilet mainstreamed and some very smart kids with Asperger's who have their own school. Whether a child is mainstreamed or in a special school depends mainly on what the parents want and where they live; the child's severity of autism has remarkably little to do with it.
Our last ABA consultant told us that Monty, the client she sees the least, is the one who improved the most. That is of course a nice thing, but I wanted much more for Monty. Put another way, ABA was good and remains good, but it is not enough.
Lovaas grossly exaggerated the improvement that is likely in severe autism (DSM3 autism/SDA). He excluded data from non-responders in his published results. This approach evidently continues to this day in some other autism studies I have read.
Kids with mild autism do not need intensive ABA with picture cards, it would be a huge waste of time and money. ABA principles can be applied to teaching emotions, empathy and other social skills to young Aspies.
Where do children with severe autism end up?
With all that Lovaas ABA behind them, these children were supposed to have become fully functional adults. Invest $200,000 in ABA in early childhood to save millions in future care costs; that still is the mantra in 2019.
Unfortunately, even after all this expense in childhood the end result still most often requires very expensive lifelong care provision, or the adult just stays at home with his aging parents.
Having closed the big State Mental Hospitals in almost all countries, there is often nowhere for many people to go. Some rich countries have some provision to live in supervised care homes or treatment centres; in the UK these are reported to be sometimes worse than the old State Mental Hospitals. Personally, I would reopen a limited number of State Mental Hospitals, much better than having mentally ill people living on the streets.
It is time to recognize that you need more than early intervention, or lifelong ABA therapy, you need to treat the underlying biology. Ideally you would combine personalized medicine with early intervention.
It is time to recognize that you need more than early intervention, or lifelong ABA therapy, you need to treat the underlying biology. Ideally you would combine personalized medicine with early intervention.
“Dad … Where’s the Shaving Foam?”
An important take away point from Dr Siegel’s recent book (The Politics of Austism), that is not contentious, is that children with autism are often taught the “wrong things” during their 15+ years of education. Much time is wasted learning academic skills that are never mastered and not even useful, while basic life skills are neglected. Neglecting life skills is very easily done and this is why every family needs to have some outside input to their autism program.
Monty’s assistant at school in the mornings is currently teaching a group of older teenagers with autism how to tie their shoe laces. This is a skill that you really do need to eventually learn; if not at 16 then when? Typical kids master tying show laces by the time they are about 5 years old.
I still get asked who brushes Monty’s teeth and who ties his laces. He is 15 years old now, he does.
Recently, I was asked who shaves Monty. He shaves himself, as I was reminded this morning when I heard a shout of:
“Dad … Where’s the Shaving Foam?”
A year ago that could only have been big brother, but now it is little brother himself.
Headphones
The stereotypical image for a boy with autism often seems to include fancy noise cancelling headphones or just ear defenders, now specially made for little heads.
Getting used to loud noises is just like getting used to tying shoe laces. It is a skill you need to practise and eventually you will likely master it.
We recently visited the noisy waiting room at a paediatric dental clinic and the two very nice dentists we came to meet immediately asked if Monty would prefer to wait outside, away from the noise. I said that years ago we might have needed that, but now it is not a problem, even screaming babies can be tolerated.I recently bought a new vacuum cleaner and this prompted our cleaning lady to recall how Monty used to hate her vacuuming and she had to do it when he was not at home.
Monty has learned to accept noise by being exposed to it. We did not hide him from noise, although the cleaning lady did. He does have sound sensitivity like many people with autism, but he has learnt to control it.
In a recent post I mentioned Monty’s new job washing cars.
He insisted at the weekend that he would clean the interior of my car, having already again cleaned the exterior.
“Dad’s car is a mess”
This translates to “now I want to clean the interior”.
Having carried the new vacuum cleaner to the garage, Monty turned to me and said -
“The vacuum cleaner will be very noisy”
Yes, but we don’t even think of walking over to where my power tools are kept and pick up the ear defenders. Noise is a part of life.
Autism friendly cinemas, theatres, even shopping
In developed countries there all kinds of adaptations being made to help people with autism. That is nice, but ultimately people with autism have to adapt to the world.
Testing limits and moving boundaries
We all have our limits and our comfort zone. Growing up typical people test their own limits and stretch their boundaries. This is one great benefit of sport, either team sport or individual pursuits.
Young children with severe autism have a very narrow comfort zone and will let you know the second you take them out of it. The natural caring reaction of parents ends up reinforcing these restricted boundaries.
Typical children are (sometimes literally) thrown in at the deep end and have to sink or swim, hopefully swim. This goes on through adolescence and the final result is a well rounded successful adult.
If you are allowed to stretch your boundaries, make failures, fall on your face only to get up and continue, you will achieve your potential. Just think about typical people you met growing up, or now see growing up, overly protective parents do not do their typical kids any good.
When you are an autistic child, with all the issues that brings, you start with very tight boundaries and a big effort is needed to widen them to engage with the world. If the boundaries are further reinforced by the upbringing, the child is losing their chance to engage with the world.
These issues all apply to typical adolescents. They usually figure things out for themselves, but a lot does seem to depend on their peer group.
At the moment I am moving Monty's boundaries to accept a lengthy dental intervention by a very nice dentist. I am also trying to move the dentist's boundaries of what is possible, so she is not worrying too much about what might not be possible. We have found a good plan B, for what to do if it is not possible to complete the job with just local anesthetic.
In most of the world dentists are no longer allowed to give general anesthetic (GA), or even I/V sedation, unless they are within a hospital. This is because years ago too many serious accidents happened at the dentist. Ten years ago, the last time Monty has real dental work, it was under general anesthetic (GA) at a private dental clinical in a neighboring country, where they brought in an anesthesiologist just for him. When I was a child in the UK, there were one million general anesthetics administered by local dentists every year, this fell to 300,000 in the mid 90s and just 57,000 in 2000. In 2002 local dentists were banned from giving general anesthetic. From then on you had to do to your local acute hospital. The result may be less convenient, but people no longer die at the local dentist from mistakes with general anesthetic.
It looks like US dentists still make extensive use of sedation, I do not know about general anesthetic (GA). One common sedative used by dentists is intravenous Valium. That would not be a good idea in someone with bumetanide-responsive autism.
Our local University hospital offers dental work under GA, but you may need to wait 2 months for an appointment and they only do "radical" procedures, meaning they just pull out teeth. They offered to make an appointment to extract Monty's tooth that I want to repair. Our plan B is a small local private hospital that also does some dentistry and offers general anesthetic. This is an option most local people were unaware of and is much cheaper than going abroad.
Having a plan B, means that proceeding with plan A is less scary for all concerned. It is also scary for the dentist, which you might not have considered, but I think it is the reason that many dentists would not even try and treat a child with more severe autism.
I did discover 10 years ago a training program for dentists called D-Termined. It is available on DVD and the originator, Dr Tesini, now has a study to show its effectiveness. Back then I could not find any dentist interested to learn how to treat difficult patients without general anesthetic.
The DVD used to be free, it has been updated but only the second part seems to be available to view online. Click the link below.
Familiarization and sequential tasking in Dentistry for patients with autism
The study is below.
Effectiveness of the D-TERMINED Program of Repetitive Tasking for Children with Autism Spectrum Disorder
In essence, it is step by step dentistry aimed at making children eventually treatable by a regular dentist, who has had no training. It is ABA applied to the dentist. You do need numerous visits to the dentist, getting comfortable with all the individual steps needed to complete a dental procedure.
Monty's new dentist is actually doing this, but based on applying her common sense. She seems most worried about the local anesthetic causing a bad behavioral reaction. When you lose feeling in your mouth/jaw some people with autism can react very badly and then the dentist has to stop and take cover. That is why you need a Plan B. I thought the injection and the drilling would be the problem.
We have now completed our first procedure that included local anesthetic, a fair amount of drilling and then filling. Strangely enough Monty enjoyed it; who else would have fun at the dentist?
Hopefully the rest of the work will go as smoothly.
P.S.
Where's the toothpaste?
This stopped being a question a few years ago, when Monty figured out what to do when he could not squeeze out any more toothpaste. Go find a new one!
Testing limits and moving boundaries
We all have our limits and our comfort zone. Growing up typical people test their own limits and stretch their boundaries. This is one great benefit of sport, either team sport or individual pursuits.
Young children with severe autism have a very narrow comfort zone and will let you know the second you take them out of it. The natural caring reaction of parents ends up reinforcing these restricted boundaries.
Typical children are (sometimes literally) thrown in at the deep end and have to sink or swim, hopefully swim. This goes on through adolescence and the final result is a well rounded successful adult.
If you are allowed to stretch your boundaries, make failures, fall on your face only to get up and continue, you will achieve your potential. Just think about typical people you met growing up, or now see growing up, overly protective parents do not do their typical kids any good.
When you are an autistic child, with all the issues that brings, you start with very tight boundaries and a big effort is needed to widen them to engage with the world. If the boundaries are further reinforced by the upbringing, the child is losing their chance to engage with the world.
These issues all apply to typical adolescents. They usually figure things out for themselves, but a lot does seem to depend on their peer group.
At the moment I am moving Monty's boundaries to accept a lengthy dental intervention by a very nice dentist. I am also trying to move the dentist's boundaries of what is possible, so she is not worrying too much about what might not be possible. We have found a good plan B, for what to do if it is not possible to complete the job with just local anesthetic.
In most of the world dentists are no longer allowed to give general anesthetic (GA), or even I/V sedation, unless they are within a hospital. This is because years ago too many serious accidents happened at the dentist. Ten years ago, the last time Monty has real dental work, it was under general anesthetic (GA) at a private dental clinical in a neighboring country, where they brought in an anesthesiologist just for him. When I was a child in the UK, there were one million general anesthetics administered by local dentists every year, this fell to 300,000 in the mid 90s and just 57,000 in 2000. In 2002 local dentists were banned from giving general anesthetic. From then on you had to do to your local acute hospital. The result may be less convenient, but people no longer die at the local dentist from mistakes with general anesthetic.
It looks like US dentists still make extensive use of sedation, I do not know about general anesthetic (GA). One common sedative used by dentists is intravenous Valium. That would not be a good idea in someone with bumetanide-responsive autism.
Our local University hospital offers dental work under GA, but you may need to wait 2 months for an appointment and they only do "radical" procedures, meaning they just pull out teeth. They offered to make an appointment to extract Monty's tooth that I want to repair. Our plan B is a small local private hospital that also does some dentistry and offers general anesthetic. This is an option most local people were unaware of and is much cheaper than going abroad.
Having a plan B, means that proceeding with plan A is less scary for all concerned. It is also scary for the dentist, which you might not have considered, but I think it is the reason that many dentists would not even try and treat a child with more severe autism.
I did discover 10 years ago a training program for dentists called D-Termined. It is available on DVD and the originator, Dr Tesini, now has a study to show its effectiveness. Back then I could not find any dentist interested to learn how to treat difficult patients without general anesthetic.
The DVD used to be free, it has been updated but only the second part seems to be available to view online. Click the link below.
Familiarization and sequential tasking in Dentistry for patients with autism
The study is below.
Effectiveness of the D-TERMINED Program of Repetitive Tasking for Children with Autism Spectrum Disorder
In essence, it is step by step dentistry aimed at making children eventually treatable by a regular dentist, who has had no training. It is ABA applied to the dentist. You do need numerous visits to the dentist, getting comfortable with all the individual steps needed to complete a dental procedure.
Monty's new dentist is actually doing this, but based on applying her common sense. She seems most worried about the local anesthetic causing a bad behavioral reaction. When you lose feeling in your mouth/jaw some people with autism can react very badly and then the dentist has to stop and take cover. That is why you need a Plan B. I thought the injection and the drilling would be the problem.
We have now completed our first procedure that included local anesthetic, a fair amount of drilling and then filling. Strangely enough Monty enjoyed it; who else would have fun at the dentist?
Hopefully the rest of the work will go as smoothly.
P.S.
Where's the toothpaste?
This stopped being a question a few years ago, when Monty figured out what to do when he could not squeeze out any more toothpaste. Go find a new one!
