Aspirin plus omega-3 for gum disease — but why might it help some ADULTS with autism? Back to resolvins and FPR2

 

 

Sometimes the most interesting autism research isn't about autism.

One of the reasons I continue to read research far outside the autism field is that biology does not respect the boundaries between medical specialties.

A discovery in Alzheimer's disease can reveal something important about autism.

A mitochondrial study can suggest a new autism hypothesis.

Research into probiotics can uncover an unexpected signalling pathway.

And sometimes you have to read about gum disease.

A new clinical trial in severe periodontitis has caught my attention because it provides an intriguing piece of human evidence for a therapeutic concept I discussed in my recent post on FPR2 and inflammation resolution.

 

Epiphany: Edging closer to targeting neuro-inflammation in autism via FPR2

There is also already some autism-specific evidence involving both omega-3 and aspirin individually.

The interesting question is what happens when they are put together.

 

A brief recap of the FPR2 idea

In my recent post, I discussed a potentially important shift in how we think about neuroinflammation in autism.

Rather than simply trying to suppress inflammation, researchers are increasingly interested in the body's own mechanisms for resolving inflammation and returning tissue to a healthy state.

One of the key players is FPR2, a receptor found on immune cells as well as microglia, astrocytes, neurons and other cells in the brain.

FPR2 can be activated by naturally occurring specialized pro-resolving mediators, including Lipoxin A4 (LXA₄) and certain resolvins.

This was particularly interesting in autism because one study found lower levels of LXA₄ in children with autism, with lower levels associated with greater autism severity in that particular study.

I also discussed a new experimental drug called MR-39, which directly activates FPR2. In autism mouse models, MR-39 reduced inflammatory signalling and was associated with improvements in synaptic proteins, dendritic spine structure and social behaviour.

The important idea was therefore not simply:

"Autism involves too much inflammation."

It was:

"Could some autistic people have difficulty switching inflammation off properly?"

If so, stimulating the body's natural resolution-and-repair system might be a more sophisticated approach than simply suppressing inflammatory pathways.

At the time, MR-39 was an experimental research compound and there was no obvious practical way to activate FPR2 safely in humans.

But there may be another way of approaching the same biological system.

And this is where an unexpected paper about gum disease becomes interesting.

 

An unexpected discovery from dentistry

The new study was a multicentre randomized clinical trial involving 109 people with advanced periodontitis.

All participants received standard mechanical treatment to remove bacterial deposits beneath the gums.

They were then randomized to receive placebo, antibiotics, omega-3 plus low-dose aspirin, or both treatments.

The antibiotic group received amoxicillin and metronidazole for two weeks.

The omega-3 group received 3 grams of omega-3 per day plus 100 mg of aspirin per day for six months.

The patients were followed for a full year.

The researchers defined treatment success as having no more than four remaining deep periodontal pockets.

In everyday language, the results mean that roughly 6 out of every 10 people receiving antibiotics improved enough to reach the study's target.

But almost exactly the same proportion of people taking omega-3 plus aspirin reached the target.

The actual figures were:

• Antibiotics: 58.6%
• Omega-3 + aspirin: 57.7%
• Antibiotics + omega-3/aspirin: 57.1%
• Placebo + mechanical treatment: 23.1%

So about 6 people in 10 reached the target with antibiotics, compared with almost 6 in 10 taking omega-3 plus aspirin, while only about 2 in 10 reached it with mechanical treatment alone.

This does not mean that omega-3 and aspirin are antibiotics.

They aren't.

What is interesting is that the two approaches produced a similar clinical outcome while acting through very different biology.

 

The body has its own inflammation-resolution system

This brings us back to the FPR2 story.

We often think of inflammation as something that should simply be switched off.

But the biology is more sophisticated than that.

Inflammation is useful.

When tissue is damaged or invaded by microbes, the immune system needs to respond. The problem arises when the inflammatory response persists after the original danger has been dealt with.

The body therefore has an active system for resolving inflammation.

Specialized pro-resolving mediators, or SPMs, help coordinate this process.

They include:

• lipoxins
• resolvins
• protectins
• maresins

These molecules do not simply suppress the immune system.

They help tell it:

"The job is done. Stop fighting and start repairing."

That distinction is important.

The goal is to allow the inflammatory response to finish properly.

 

Omega-3 is already an interesting molecule in autism

It is important to make clear that omega-3 is not a new idea in autism.

There have been numerous studies investigating EPA and DHA in people with autism or ADHD. The clinical results have been inconsistent, so omega-3 cannot currently be regarded as an established treatment for the core characteristics of autism.

Nevertheless, there are several reasons why researchers have been interested in it.

EPA and DHA have important roles in the brain and are also precursors for specialized pro-resolving mediators.

So omega-3 is potentially doing something more interesting than simply acting as a conventional "anti-inflammatory."

It provides some of the raw material from which the body's inflammation-resolution system makes its signalling molecules.

Aspirin is also not a completely new idea

Aspirin is not being introduced here as an entirely new autism treatment either.

A 2024 study investigated chronic low-dose aspirin in rats exposed prenatally to valproic acid, an established animal model used to produce autism-like behaviours.

The researchers reported that aspirin:

• improved social behaviour
• reduced repetitive grooming
• reduced anxiety-like behaviour
• increased AMPK activity in the hippocampus.

The study therefore provides an autism-specific experimental reason to be interested in aspirin, although obviously a rat study cannot establish that aspirin improves autism in humans.

AMPK is particularly interesting because it is one of the cell's major energy sensors and regulates processes involved in cellular energy metabolism, mitochondrial function, autophagy and cellular stress responses.

So aspirin already has an independent connection to autism research.

 

So what is new?  The interesting part is the combination

What interests me is the specific biological reason for combining them.

And that reason comes directly from the FPR2 hypothesis discussed in my previous post.

 

Omega-3 provides the ingredients

EPA and DHA are precursors for several specialized pro-resolving mediators.

But aspirin introduces an additional biochemical effect.

Aspirin can modify the activity of COX enzymes and redirect some lipid metabolism towards aspirin-triggered specialized pro-resolving mediators.

These include aspirin-triggered forms of resolvins.

Some of these resolution signals can activate FPR2.

This gives us a potential sequence:

 

This is why the combination is more interesting than either component considered in isolation.

The hypothesis is not simply:

"Omega-3 is anti-inflammatory, so perhaps it helps autism."

It is much more specific:

"If impaired inflammation resolution is relevant to a subset of autistic people, could omega-3 plus aspirin increase endogenous pro-resolving signalling and thereby activate pathways such as FPR2?"

That is a testable biological hypothesis.

This connects directly to my previous FPR2 post

In my previous post I discussed research reporting lower circulating Lipoxin A4 (LXA₄) in children with autism, with lower LXA₄ associated with greater autism severity in that particular study.

LXA₄ is itself a specialized pro-resolving mediator and an important FPR2 ligand.

I also discussed the experimental FPR2 agonist MR-39.

MR-39 attempts to activate the resolution system directly through FPR2.

The omega-3/aspirin approach would be different.

Rather than directly activating FPR2 with a synthetic drug, it would attempt to increase the body's own production of pro-resolving signals upstream.

So there are now two conceptually different approaches to the same biological system:

MR-39 → direct FPR2 activation

versus

omega-3 + aspirin → increased pro-resolving lipid mediator production → FPR2 and related pathways

 

The latter is obviously much less specific than a dedicated FPR2 agonist.

But biologically, the two ideas converge.

 

Why might this matter to some autistic adults?

A treatment given during early brain development is not necessarily going to have the same effect in an adult.

However, the fact that autism is developmental does not mean that all associated biological abnormalities become permanently fixed once development ends.

An autistic adult can still have differences in:

• immune signalling
• microglial activity
• mitochondrial function
• cellular energy metabolism
• synaptic plasticity
• inflammatory signalling.

If persistent neuroinflammation or metabolic stress is present in a particular person, it is conceivable that changing that biology could improve how the existing neural network functions.

It might mean improving particular domains of function.

For example:

executive function

cognitive flexibility

social engagement

repetitive behaviour

Whether this actually happens in humans remains unknown.

 

Perhaps omega-3 alone is not the whole story

There have already been numerous studies of omega-3 supplementation in autism.

The inconsistent results are interesting.

Perhaps simply supplying more EPA and DHA is not sufficient.

The important question might instead be:

Can the individual efficiently convert those fatty acids into the pro-resolving mediators needed to terminate inflammation?

If the bottleneck is downstream of the fatty acid itself, increasing omega-3 intake may have limited effects.

Aspirin could potentially change the metabolic pathway and increase formation of certain aspirin-triggered pro-resolving mediators.

The dental study provides an important human clue

This is where the periodontitis trial becomes relevant.

The researchers were not trying to treat autism.

They were trying to treat severe gum disease.

Yet omega-3 plus low-dose aspirin produced a clinical result remarkably similar to the antibiotic treatment.

That does not prove anything about autism.

Periodontal inflammation and neuroinflammation are obviously not the same thing.

But it does provide human evidence that manipulating the body's resolution pathways can produce a substantial clinical effect in a chronic inflammatory disease.

That makes the underlying concept more interesting.

And the fact that the treatment did not appear to provide additional benefit when simply added to antibiotics is also intriguing.

The omega-3/aspirin intervention was not just acting as another antibiotic.

It appears to have been addressing a different part of the disease process.

 

Who might respond?

I would not expect every autistic person to respond.

If the mechanism is correct, the likely responders might be people with some combination of:

• persistent inflammatory signalling
• altered immune regulation
• oxidative or metabolic stress
• impaired inflammation resolution
• altered lipid mediator profiles.

That immediately suggests a precision-medicine approach.

Rather than giving the treatment to everybody with an autism diagnosis, identify people whose biology suggests that this particular pathway is abnormal.

 

An important warning about aspirin

There is an obvious reason to be cautious here.

Aspirin is a drug, not a nutritional supplement.

It affects platelet function and can increase bleeding risk. It also has important age-specific safety considerations.

In particular, aspirin should not routinely be given to children or teenagers because of the risk of Reye's syndrome associated with aspirin exposure during certain viral illnesses.

The discussion here is therefore particularly relevant to the question of adult autism, and even there it remains a research hypothesis rather than a treatment recommendation.

 

Why reading outside autism matters

This is perhaps the most important lesson from this whole exercise.

The autism research gave us one piece:

reduced LXA₄ and the possibility of impaired resolution

The FPR2 research gave us another:

direct activation of an inflammation-resolution receptor can improve inflammatory and synaptic abnormalities in autism animal models.

The aspirin/autism animal study gave us another:

low-dose aspirin can alter AMPK signalling and improve autism-like behaviours in rats.

And then a group of researchers studying gum disease unexpectedly supplied another:

omega-3 plus low-dose aspirin can produce a clinical outcome comparable to antibiotics in severe periodontal disease.

But biology does not care whether a paper is published in a dental journal, an autism journal, a neuroscience journal or a mitochondrial journal.

The same molecules and signalling pathways operate across different diseases.

This is why I think anyone seriously interested in autism needs to read far beyond autism research.

Occasionally, it is in a paper about gum disease!

For the moment, I would regard omega-3 plus low-dose aspirin as an intriguing hypothesis for a subset of autistic adults, not as an established autism treatment.

But given the existing evidence for omega-3, the experimental evidence for aspirin, the FPR2/LXA₄ hypothesis, and now the unexpected human findings in periodontitis, I think it is a hypothesis worth testing if you want an OTC anti-inflammatory therapy.

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Many parents want curative treatments for autism.

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

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

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

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

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

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

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

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

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

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

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

Economic evaluation

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

Implications for service provision

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

Conclusion

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

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

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

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

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

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

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

Then just keep going and let time do its work.

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

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

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

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

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

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

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

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

AUTISM: HOW CULTURE INFLUENCES OUTCOMES

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

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

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

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

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

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

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

The Indian Experiment rather than the Swedish Experiment

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

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

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

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

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

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

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

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


Controlled Infection vs Vaccination

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

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

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

    

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