Dentistry Gangnam-Style vs Native American (Papoose) - Style

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There have been previous posts in this blog about dental treatment for those with autism.  I am sure readers with older children have already found what works for them.  Many people are not regular readers, so there is some repetition in today’s post.

There is no single best solution for the dentist because your options are very different depending on where you live and your budget.

In the US you have the widest choice, but they are all pricey.

In other countries there are more legal restrictions. Some countries with universal healthcare have well organised free solutions for those with special needs, but you may have little choice.

In many countries all the options are pretty bad.

It looks like US dentists are taught two broad options: -

·        Sedation

·        Immobilization

I think they are often missing a missing a third option, D-Termined or similar, which I think is the best one.


Sedation

There are several levels of sedation, all the way up to deep sedation and finally general anesthetic.

There are legal restrictions on how far dentists can go with sedation and this varies widely depending on where you live.

Where we live the dental clinic can give you local anesthetic and no more. In the UK light sedation and moderate sedation is permitted.  For a higher degree of sedation, you need to be in a hospital, with all the emergency back-up.

Intravenous (I/V) sedation is quite common for those with anxiety, but you have to sit still while you are connected up.

General anesthetic seems to be very commonly used for special needs kids and I presume the adults they become, of whom we hear very little.

Immobilization

I had never heard of immobilization, probably because in many countries it is illegal.

In the US immobilization is widely known.  Some people think it is great and some people do not.

The patient is physically attached to the dental chair so that they cannot move.

Protective Stabilization for Pediatric Dental Patients

D-Termined or similar

There is a third option, which you might just call “good dentistry”.  I eventually found two dentists like this.  They break everything down into steps and make sure the child gets familiarized with each step, before moving on to the next.  They are not in a hurry and they try to make the experience as fun as possible, inflating surgical gloves like a balloon etc.

One US dentist developed his own system in the belief that most people with special needs can be treated conventionally and should not need to resort to general anesthetic.

Dr Tesini named his method the D-Termined program. More than a decade ago he made a training DVD for fellow dentists which was available for free, thanks to a supportive charity. Much more recently he published a peer-reviewed paper showing its effectiveness at reducing the need for general anesthetic.

D-Termined is ABA applied to dentistry.  Everything is broken down into simple steps.  Once you have mastered being able to sit still in the chair and keep your arms still, you move on to learn about all the gadgets the dentist can use.  Eventually, after a few visits, you move on to a simple actual procedure, like polishing/de-scaling teeth.    

Keeping you arms still is step our new dentist does not teach/insist on.  This is a mistake, since it can be taught and flapping arms can be dangerous.

I did acquire the DVD training by Dr Tesini ten years ago and tried without success to find a local dentist interested to apply it.

You might wonder while all pediatric dentists are not at least aware of the D-Termined program.  Apparently having learned with D-Termined most patients can successfully transfer to any other dentist.  This would save a huge amount of money in admissions to hospital for dental work.

Effectiveness of the D-TERMINED Program of Repetitive Tasking for Children with Autism Spectrum Disorder. 

PURPOSE:

The purpose of this study was to compare the effectiveness of the D-TERMINED Program with standard behavior guidance techniques (SBGTs) used for children with autism spectrum disorder (ASD) in a private dental setting.

METHODS:

A retrospective data analysis was performed from records of children with ASD who received treatment using either the D-TERMINED program or SBGTs at two private dental practices. Data were analyzed using chi-square, Fisher's exact, Wilcoxon Signed Rank, and Mann-Whitney U tests and logistic regression.

RESULTS:

Forty-four charts (22 in each group) were selected from office visits between 1999 and 2012. Children in the D-TERMINED group were significantly younger (P=0.01). There were no significant differences between groups regarding gender and dental care characteristics. Patients treated with the D-TERMINED program showed a significantly greater improvement in behavioral scores compared to the control group (P=0.03). Additionally, children treated with the D-TERMINED program had significantly lower referrals for dental treatment under general anesthesia (P=0.04).

CONCLUSION:

The D-TERMINED program may help children with ASD learn the cooperation skills necessary to receive treatment in a dental practice, which might impact health care cost effectiveness.

In Monty’s dental training program, we practised at home with an electric drill. Monty made a burning smell drilling into some old pieces of oak. So, he got used to strange sounds, vibrations and smells.  We practised with a syringe how the anesthetic is applied.

Costs in the US

A survey by TheWealthyDentist.com reports an average cost of $482 for IV sedation. General anesthesia can cost $300-$1,000 or more and averages about $600-$700, depending on the complexity of dental procedure.

Monty and the Dental Marathon

About a month ago Monty finished his dental marathon of fifteen visits to the dentist since March.  It was entirely successful but it did take much longer than I had expected.

I got to learn about restorative dentistry. In Monty’s case his decay was deep and could not be repaired leaving the nerve intact in a single visit to the dentist.  A live tooth has the nerve intact and has its own blood supply.  I wanted his two problematic teeth to retain their nerves.

The dentist drills out as much decay as possible and then adds layer of Calcium Hydroxide, which is very alkaline.  This then causes the nerve to withdraw slightly and slowly the pulp above the nerve is converted to dentine (so-called reparative dentine), you add a temporary filling and wait for 6-7 weeks.  Then you remove the temporary filling, drill a bit deeper, again avoiding the nerve, add a layer of calcium hydroxide and another temporary filling and wait another 6-7 weeks. The end result is that you can remove deep decay without removing the nerve.

On two rear teeth Monty had temporary fillings four times before he got the final permanent filling.  That means being injected with local anesthetic ten times and ten trips to the dentist.

In addition, he has visits for fissure sealant to be applied on the remaining teeth.

Our original “nice dentist” from 4 years ago went on an extended maternity leave and it was toothache that prompted the need for a different one. Fortunately, we found a nice new dentist who in the last couple of years developed an interest in treating autistic kids. Even she was not keen to work on the rear teeth.  She can only give local anesthetic; she cannot use US-style physical immobilization. Her suggestion was to make an appointment for dentistry under general anesthetic.  So off we went to the local University hospital where, as expected, they wanted to extract both teeth under general anesthetic, all they do is so-called “radical dentistry”, but even for this option you wait 3-4 months for an appointment.

I asked why can you not save the teeth?  Like with a typical child.

I was told that Monty would struggle with local anesthetic, the rear teeth are particularly difficult.  Some kids with autism can struggle with the loss of sensation and end up biting themselves quite badly.

I said not to worry about the local anesthetic, we would easily get him through that part.  Yes, he has autism, but he is no longer typically autistic - he is now "different".  We do not avoid challenges; we try to overcome them.

Our new dentist basically said she would only try and repair the teeth if there was a plan B for emergency extraction.  Such an extraction is not possible at the government hospital and she would not be able to do it either.

More than 10 years ago when Monty needed emergency dental work, we had to take him to a neighbouring country where it is legal to have general anesthetic in a dental clinic.

Fortunately, a local private medical clinic that does minor operations has recently started doing some dentistry and they can offer general anaesthetic.  So off I went there to see if they would help.  I met a very pleasant dental surgeon who had just relocated home from Chile and he also thought teeth should be repaired and not extracted.  He was happy to provide the plan B.

Feeling much happier, our dentist agreed to proceed and our dental marathon began.

We started in winter, so no allergy-affected behaviour, and things went very well.  The dentist told me “it was exactly as you said it would be”, Monty could comply with treatment like any typical teenager.  Anaesthetic no problem, drilling no problem.  Monty get to choose the music during the dental procedures.  It was stress free.

As we moved to spring and then summer, compliance did fade slightly.  The worst day and in fact the only really tough visit was the for the final drilling and filling on the lower tooth.  The anesthetic did not seem to have gone in exactly the right place, Monty was not happy, the anesthetic was repeated, to no avail.  I had to keep him and indeed the dentist as calm as possible.  I had to stand in front of the dental chair and talk to Monty the entire time, reassuring him, counting up to 20, down from 20, having him pick the number etc to distract him from the procedure.

  

That was a visit the dentist will not forget.  Monty on the other hand got out of the chair as if nothing had happened.

For dental visit number 15 and the final drilling and filling on the upper tooth I had started to use DMF and Azosemide; there was no anxiety, everything was like in the winter.  Monty was a model patient and the dentist was sad that we had finished our marathon.

Dentistry is not expensive where we live, so our 15 visits probably cost about the price of one composite adult filling in the US.

Gangnam Style

Monty became very comfortable with his visits to the dentist, getting the dental assistant to put his favourite music to play. For his final visit getting permanent filling number two, he requested “Gangnam Style”. With his mouth full of cotton wool (saliva absorbers) I had no idea what he was saying, but the dentist understood and it was time for K-pop.

Papoose Board

Until very recently I had never heard of the Papoose Board and its use in dentistry; where I come from it is actually illegal to use it.

A papoose means a native American child. A papoose board is like a straight jacket, but it immobilizes the entire body, including your head.  It is like being encased in Velcro straps.

During my many visits to the dentist I learnt that a common problem treating children with autism is that they do not sit still in the dental chair and they flap their arms about which can make it difficult to get any work done.  It usually requires the help of the dental assistant so that the dentist has two arms available for her work.

So, you can see where the idea if strapping the child to the chair comes from.

Personally, I cannot think of anything worse during visit to the dentist than having my arms strapped to my body for 30-60 minutes. What if you want to itch your nose? You are non-verbal so you cannot ask the dentist to do it for you.  That is just me.

There are horror stories in the US media about the use of a Papoose board, but there was a recent post on the NCSA website saying how great it was for one child with severe autism.  It is a case of finding what works for your n=1 case.

In Dental Care for Severe Autism, a Papoose Board Comes to the Rescue

Conclusion

Finding dental care for someone with autism is very often a huge problem.  In some countries you get free care that is well organized, but you may not get any choice as to what is done, or indeed how.

Many people with autism routinely have all procedures using general anesthetic, that is OK if you have a qualified anesthetist monitoring the situation.  It must be better to learn how to sit in the chair and have regular dentistry using local anesthetic.  It is much cheaper and much safer.

I personally think Gangnam style dentistry is much more preferable to the native American style.  Yes, it will take longer, at least until the first filling has been completed successfully.

There clearly are people with autism who accept being strapped to the dental chair with Velcro and some who enjoy it. Temple Grandin is a big fan of squeezing/pressure therapy, so I expect she would enjoy being strapped to a Papoose Board.

Another thing I came across was that parents in some countries are not present while the child is having the dental procedure. I came across one lady furious to find out that her child was strapped up in a Papoose board, she was totally unaware it was being used, until she left the waiting room to look for her child.  I suppose it depends if having the parent present is helpful, or just adding to the stress - both cases are possible.  

An old post from 2014:-

       A Surprise at the Dentist

Dad ... where's the shaving foam? and Fun at the Dentist

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 all the young kids with autism “get better”? Sadly, not the case.

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 eternal

The 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? 

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.

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.

“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!