Friday 26 November 2021

The Cost of Autism


 Trivial autism can sometimes bring huge benefits,

but severe autism always brings huge costs.


Some readers of this blog are involved in public policy relating to autism, which is very much concerned with how public resources are allocated to both health and education.

Today’s post is about this big picture rather than the very specific case each family is dealing with. 

On an individual basis some people are spending nothing on autism, while others, mainly in North America, are spending/consuming several hundred thousand dollars/pounds/euros a year.  Wherever you live the process is often far from equitable.

All the interest groups have their own particular agendas, often completely at odds with each other.

As various factors continue to combine to increase the prevalence of autism, it is important to consider who is going to pay for it, where indeed there is any cost attached to the diagnosis.  For example, the new gender-confused type of autism is something very different; indeed such people likely do not see their autism as a neurological disorder. Wanting to be a non-binary they/them/their person is fine, by why seek to add an autism label? 

When it comes to other common neurological disorders, some are dealt with in a matter-of-fact way like Cerebral Palsy (CP), where there are estimates of the additional cost incurred and also analysis of the cost effectiveness of therapies. In the case of Down Syndrome nobody appears to dare investigate the full costs, it seems to be a taboo subject.

CP is rarely genetic and is nearly always caused by a chance event, like hypoxia during birth. CP has a very wide spectrum with severe mental and severe physical disability at one extreme, and limited physical disability at the other.

Down Syndrome (DS) is caused by an extra copy of all, or part of, the 21st chromosome and is often routinely tested for during pregnancy.  In Denmark 98% of pregnancies with a Down syndrome diagnosis are terminated, while the figure is 67% in the United States. DS is also a spectrum, but much narrower than CP, or autism.

The cost of living with a medical condition is important to quantify, when you need to assess the viability of extremely expensive potential treatments. For example, all single gene autisms are potentially treatable by gene therapy, but it would be hugely expensive. Such therapy would be based on technology similar to that use to make the most modern covid vaccines and we saw how fast that was applied - in months not decades.

Even polygenic autism can benefit from gene therapy, but it could only correct one downstream dysfunction. For example, some Italians I contacted last year are developing a gene therapy to do the same thing as bumetanide and reduce chloride levels in neurons. They can reduce the expression of the NKCC1 transporter that lets chloride enter neurons by targeting the SLC12A2 gene. But, at what cost?

How much would I pay for an SLC12A2 therapy?

1mg of bumetanide costs 10 cents.

50 years of therapy would cost EUR/USD 3,650

So, if the Italians charged EUR/USD 500,000 for a hopefully one-off injection, I doubt public health would ever pay for it.

How much would I pay for it? Certainly, much more than EUR/USD 3,650

A therapy targeting the MECP2 gene would treat girls with Rett Syndrome and might be hugely beneficial, if given extremely young. It would have a value in the millions of dollars and I suppose public health would pay for it.

A gene therapy for Down Syndrome would need to target 300+ genes. A big job, but theoretically possible, we know exactly which genes to down-regulate. The big advantage is that you could give the therapy before birth, since you usually have plenty of advance warning of DS, and so the impact could be really profound.


Back to autism and the real world


Costs in early childhood

Only in North America is expensive, one-to-one, early intervention very common.  In other countries people get by with much less costly approaches.  Is the end result any different?  How about some evidence?

That “evidence” has been rather cherry-picked and quoted so often that most North Americans now believe that early intervention is transformative.  This drives the desire to diagnose at ever younger ages.  The reality is somewhat different, as we saw when we discovered that Lovaas “cheated” in his clinical trials of ABA, by simply excluding those who did not respond during his trials, as set out in Dr Bryna Siegel’s book, the Politics of Autism.  

If early intervention just leads to lifelong intervention, does that count as effective.  Is better than nothing at all, really good enough? I think not.

Also concerning is the use of intensive and expensive behavioral intervention in children with mild autism, average to above average IQ and who are fully verbal.  Not only is this a waste of resources, it may actually be counter-productive.

Many parents of young children with mild, level 1 autism, still want to have their 40 hours a week of “free” ABA.  I do not see the point in that.

The younger you diagnose autism the greater chance you include children who are just delayed, rather than autistic, then you will produce glowing reports of ultra early intervention, which are false.

Before we get to the research, I should present today's graphic to make my main point.


Trivial autism can sometimes bring huge benefits,

but severe autism always brings huge costs.


According to the rather simplistic American definition of autism, contained in DSM5, we have just 3 levels, 1 to 3, to pigeonhole everyone with autism, including school-diagnosed and increasingly self-diagnosed autism.

Let’s be more reasonable and start with zero, to make space for those ultra successful tech entrepreneurs like Elon Musk and those hedge fund billionaires, with autistic children. For all these people, their very mild autism turned out to be a huge benefit.

But, as we all know and Dr Boles the geneticist reminded us, you can have too much of a good thing. The result is much more severe autism.

The really severe autism I will put beyond level 3, let’s call it 3+.  This kind of autism is hugely expensive to accommodate, because it requires 24-hour lifelong care with multiple staff attending. 

It will cost more than the worst cases of cerebral palsy (CP), because those people with CP don’t move and so cannot be violent.

This is the face of much of the autism from the 1930s to 1970 that was hidden away in large mental institutions.  This is the condition the Germans did actually put a price on and determined it was a waste of society’s resources and opted for euthanasia. In the English-speaking world, the solution was not much better, letting people die very young in institutions from neglect.

Nobody collected detailed data on autism, but they have done on Down Syndrome (DS).  The chart below shows what happened to life expectancy (age at death, really) once kids were no longer sent to live in institutions.  Children who would have died in early childhood now live past their 40s.





The lifetime cost of caring for someone with level 3+ autism, particularly if they are aggressive, is vast in developed countries. It can be 10 to 20 times the cost of keeping someone in jail. Most US states spend about $30,000 a year to incarcerate a convict.  Psychiatric inpatient care is incredibly expensive. Depending on the facility and the circumstances it typically costs $1,000 to $2,000 a day. 

In much of the world, that is not so developed and so autism is less prevalent, the solution is effectively the one from before the 1970s in the United States; neglect and an early death. The limited resources in such countries are focused on the able – the old German approach.


Making Money out of Autism

Providing early intervention is now a huge business in North America, because billions of dollars a year of funding is available.

Parents naturally all want the best for their children.  Doctors want to be able to have at least something to recommend as a therapy. Private investors see a pot of gold.  Nobody wants to be objective, does the emperor have any clothes?

Public provision of accommodation for those with severe autism has been outsourced to the private sector in many countries.  The costs have actually increased and yet standards are often lower. Some challenging cases fall through the cracks in the system and are not catered for by the private sector – these people are not profitable to care for.

When it comes to the pharmaceutical industry, they initially saw a huge opportunity to make money out of new therapies, but to date they have only experienced costly failures. New entrants continue to appear, dreaming of $50,000 a year therapies.  The smart thing to do is to just re-purpose drugs that already exist – what this blog is really all about.

It looks like market forces alone will not result in a good solution, so there needs to be an effective public policy intervention. Sadly, public policy is overly concerned with liberal political correctness, rather than grasping a problem and getting the job done.  Pandemics are an exception to the rule.



Autism Tsunami: The Impact of Rising Prevalence on the Societal Cost of Autism in the United States




Some people do not like the author of the above paper, Mark Blaxill, because of his belief that vaccinations are a common trigger for autism.  They got quite upset about this latest paper and questioned how a scientific journal could possibly give him a voice. Such people should do their homework; as well as books and films on the subject, Blaxill has already published 14 peer-reviewed papers. He’s a man with a mission.

I don’t actually agree with Blaxill, but I think he has every right to his opinions and have them published.  Very many things can trigger “autism”, even a mosquito bite (via cerebral inflammation, causing brain damage). Extreme reactions to vaccinations do occur and certain people have a genetic susceptibility, as argued “in court” by the Johns Hopkins clinicians and covered elsewhere in this blog.  Blaxill clearly does have a point, but not one that Public Health wants to hear.

When it comes to his paper on the cost of autism in the US, there is no mention of vaccines.  Being a former management consultant, he likes graphs and charts which his paper is full of.

The horrendously expensive autism is the 3+ category.  Children in this category are going to need special schools, for sure.  At least where we live, there has been no increase in the number of special schools, they were all built many decades ago.

The huge increase in cost is driven by Blaxill’s assumption of prevalence of severe autism (he uses data from California) and what to do with all the future adults with autism.



The reality is that really severe autism does not improve much with Blaxill’s $63,500 a year in therapy. After ten years of therapy the great majority will still be severely disabled.    

“Similarly, when broken down into age categories, 67% of the cost of ASD in the Base Case scenario in 2020 is due to youth age 21 and under, with 42% of the total cost due to children age 11 and under alone (Fig. 5). This cost breakdown shifts dramatically moving out toward 2060, when adults age 22 and older account for nearly 71% of all costs.”

I think Blaxill, as an autism Dad himself, may have failed to factor in the reduced life expectancy of those with severe autism. Life expectancy is under 40 years. Many autism parents will outlive their own children. There may not be a huge crowd of senior citizens with level 3+ autism to care for.

Autism prevalence is going up and part of that is a genuine increase in people with severe autism.  This is inevitable, given what we already know about what causes autism and how modern life keeps adding additional risk factors.


How to avoid the burden of funding autism?

Make behavioral therapy much more cost effective.  Many individual parents already do this, but therapy has become a big business with easy profits for some providers. If somebody has funding to pay $60,000 a year, why bother figuring out how to achieve the same for $20,000 a year?

Make much better use of the existing resources and medically treat those with severe autism, before starting to spend $60,000 a year on behavioral therapy.

Older parents will be able to continue to care for their level 3 + child at home, if they are treated down to level 3, which really means getting rid of those challenging aggressive behaviors.  This blog is full of ways to do this, at minimal cost.

Reduce future autism, by applying what the existing science tells us. We know what factors raise the burden towards autism and we know how to reduce them.

Trivial autism is a first generational step towards something very different.  The recent fashion for minor celebrity autism Mums/Moms in the UK to come out as "autistic" themselves is a great example. Their very mild autism morphed into something very different in just one generation. Would it not have been cost-effective to prevent/minimize this?  It is a question that should be raised and answered.


Value for Money

When rationing healthcare, or expensive drugs, which is a fundamental part of modern medicine, you have to look at the costs and the benefits.

A lot of money is wasted.

I learned this the hard way with endoscopies over 15 years.

My first one cost about EUR/USD 3,000 with an overnight stay in the hospital and with general anesthetic/anaesthetic.

The second one cost me just EUR/USD 100 and was like torture, with no anesthetic.

The third one cost EUR/USD 300, with short-acting anesthetic.  Third time lucky.

All 3 investigations give the same information.  It is a question of how much comfort you want to pay for, or you expect someone else to pay for.

I wrote a lot about special needs dentistry.  This is another area where a great deal of money is wasted.  Special kids can be taught to be regular patients and be treated without costly general anesthetic.

The critical reviews of the wide range of behavioral interventions are not very positive, even to the ones that I used and I do still recommend.  You can pick and choose data from the studies to confirm any position you want to take.

The really good studies are the longitudinal ones, that run to adulthood. In these studies, the “star performers”, who do really well, do not share any therapies in common; it is as if outcomes were random.  Disappointing, but apparently true.

It is strange that a huge business of early intervention in North America has been built on quite such shaky “evidence”.

When it comes to pharmaceutical intervention, the level of proof of universal effect is so elevated that it appears there are no beneficial therapies.  I think we have been rejecting some therapies that are effective, in at least a sub-group.

Some severely autistic children with level 3 + autism grow up into adults who are totally unmanageable. Would it not have been cost effective to go down the personalized medicine route and try and treat them?

Looked at rather coldly, I think you can say that a vast amount of money is wasted each year looking after people with severe autism.  Much better results could be obtained by spending less money, but in a different way.  Many people diagnosed today with level 1 autism need no treatment and really should be considered level 0. 



Mild 2020s autism (level zero) often has no cost at all and it might just help you become very successful, particularly if combined with a high IQ.

Severe autism always costs a lot of money; a parent often gives up work, schooling is more expensive and adults with severe autism rarely have unsupported employment.  Those unable to live independently will need to be housed and supported their entire lives, initially by the family and later by society.

Institutional mental facilities have been closed down around the world. Factories around the world that gainfully employed disabled people have been closed.  All in the name of progress and political correctness.

The old, cruel but efficient, ways of handling the lives of people with severe autism, Down Syndrome, or intellectual disability have not been replaced by adequate alternatives.  If society has decided to extend these people’s lives, it has to create new spaces and opportunities for them, rather than do the opposite and close them down.  This is the real issue for advocates at the US National Council for Severe Autism (NCSA).

Part-time researcher, Blaxill, is awaiting an autism tsunami and its consequences, which seems to be an outlook shared by the NCSA.  Odd bedfellows indeed!

Many researchers believe that there has been no increase in underlying autism, just a much broader definition, diagnostic substitution from ID/MR to ASD and greater awareness and desire to get diagnosed.  If you look in depth, you will see that in addition to these contributing factors, there also has been a genuine increase in more strictly defined autism.

It is not surprising that the US leads the way in the increase in strictly defined autism. Most of the factors driving this increase are environmental and lifestyle factors and these are most advanced in the US.  I doubt you will see a surge in strictly defined autism in Africa or North Korea, but you already see it in South Korea.

Take preventative steps now to reduce future autism and indeed all other auto-immune conditions.  It isn’t rocket science and it would save a vast amount of money.  Will this happen? Highly unlikely, but nothing stops you doing it.


Saturday 13 November 2021

From PANS to PANDAS? Another Problem Solved


Source: EpiphanyASD


There is a lot written about PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) which is a subset of PANS; however they are still not fully recognized as medical conditions.

I prefer to see PANS/PANDAS in the broader context of autoimmune encephalitis, a collection of related conditions in which the body's immune system mistakenly attacks the brain, causing inflammation. The immune system produces antibodies that mistakenly attack heathy receptors in the brain.  Depending on which types of receptors are targeted, you will get different symptoms, plus you will get symptoms from the inflammation.

If they are NMDA receptors, you may have hallucinations and appear to have developed schizophrenia overnight.

It has been suggested that the definition of PANS is too narrow and a broader term called CANS was proposed.  CANS is not exactly the same as PANS.  PANS is the popular term in the US.

“A 2011 paper by Singer proposed a new, "broader concept o childhood acute neuropsychiatric symptoms (CANS)", removing some of the PANDAS criteria in favor or requiring only acute-onset. Singer said there were "numerous causes for CANS", which was proposed because of the "inconclusive and conflicting scientific support" for PANDAS, including "strong evidence suggesting the absence of an important role for GABHS, a failure to apply published [PANDAS] criteria, and a lack of scientific support for proposed therapies".

Moving from PANDAS to CANS (pay-walled)

I do not see why the focus is always on children, because we know that adults can also be affected.

In children and adults with autism it seems that quite often they may suddenly develop verbal or motor tics, as the obvious symptom of autoimmune encephalitis.  These tics gradually disappear when treated with a short course of oral steroids.

One point emphasized by the likes of Susan Swedo, at the US National Institute of Mental Health, is that PANS/PANDAS is not autism.

Non-autistic children can develop PANS/PANDAS, but so can autistic people.

A non-autistic child with untreated PANS/PANDAS would appear to most people as autistic, so similar are the symptoms.

An adult with NMDA receptors encephalitis will very likely be diagnosed as schizophrenic.

The autistic person who develops PANS/PANDAS appears like an autistic person who has encountered a regression. Many of the symptoms of PANS/PANDAS are common symptoms of autism, so the onset of PANS/PANDAS may just look like the already present symptoms have gotten worse.

Susan Swedo has commented that there is nothing to suggest PANS/PANDAS is more common in children with autism. She states that PANS/PANDAS is a condition of onset in early childhood, which is likely to reoccur when re-exposed to the same trigger, but reoccurrence is much less of a risk after 21 years old.

I think most cases of PANS/PANDAS in people with severe autism are never diagnosed and so never treated.  It is just put down as an autistic regression.  How many of those adults with severe autism and extremely challenging behaviors fall into this category?  Given the enormous cost, up to half a million dollars a year, to house this type of person in a care facility with 24-hour support, you would think a little bit more effort should be given to early diagnosis and treatment.


A Sceptical World

One of our neurologist readers commented in this blog about how she successfully treated her child’s PANS episode, even though in her country PANS does not exist as a diagnosis and her colleagues at work had no idea how to treat it. Quick intervention required only minor treatment.

In some countries with free universal healthcare, you only get to diagnose and treat PANS if you go outside that system and pay extra.

In the US there are some pretty expensive tests proposed for PANS and CANS.

In mainstream medicine PANS/PANDAS are not generally accepted as conditions and yet Stanford University has had a PANS/PANDAS clinic for a decade.


Time for detective work


The usual issue I have to manage in spring/summer is what I call summertime raging and dumber in the summer.  Note that a cognitive regression is a very common symptom of PANS/PANDAS.

My solution to summertime raging and dumber in the summer revolves around allergy, mast cells and reducing pro-inflammatory cytokines.

This year some new symptoms developed after summer:

·        Sensory amplification, in the form of sound sensitivity

·        Clinginess to Mum/Mom and separation anxiety

·        Hair twirling, using fingers to twist hair

·        Nail picking, the medical term is Onychotillomania

·        General anxiety

·        Increased urinary frequency, not due to a UTI (urinary tract infection)

·        Aggression and reactive rage (as opposed to predatory rage)

·        Mood disorder, crying for no apparent reason at school and home 

All the above symptoms can be passed off as autism.

Sound sensitivity is a common problem in autism, but Monty was getting so sensitive to sounds that he could not tolerate sitting next to someone eating at home. At school, where it is very noisy, this was not a problem.

Clinginess to Mum/Mom rather merged with the aggression and reactive rage symptoms.  Aggression is a very common problem in severe autism and it is usually directed mainly at Mum.  This time it was not just behaviors, but talking in advance about potential aggressive behaviors, this was new and got worse and worse.

Hair twirling has occurred before and is a common expression of anxiety, which then just becomes a habit, like a stim or tic.  This was previously resolved by a haircut.  This time the short hair did not solve the issue.

Nail picking (Onychotillomania) is when use your index finger to pick at the cuticle on your thumb and end up tearing the skin. This is rather like compulsive hair pulling (Trichotillomania) which is a common feature of OCD (obsessive compulsive disorder).  NAC is used to treat Trichotillomania. 

Anxiety is nearly always an issue in all levels of autism. 

The urinary symptoms of PANS/PANDAS are something that I had not paid attention to earlier. 

We covered polydipsia, drinking too much water, in a special post. This is a big problem for some readers of this blog. 

Thirst – Too much or too little (Polydipsia and Hypodipsia) Vasopressin and Angiotensin

People taking Bumetanide for autism will drink a lot, but should do so only in the few hours after taking the therapy, not all day long.

Autistic people with polydipsia are at risk of death due to low sodium levels (hyponatremia).

Monty was drinking so much I was giving him additional sodium and potassium.

Children with autism often use toilet breaks as an escape from whatever task they have been given.  Monty’s assistant had commented on how he seemed to be trying to escape from her.

The mood disorder was very marked and on one occasion Monty cried at school; his classmates were worried about him and did their best to comfort him.  This had never happened before and there was no apparent trigger. The same thing happened at home a few times, normally in the evening.

After a gradual worsening of the above symptoms, Monty had a viral infection, and he informed us that he had a sore throat. Behaviors then got significantly worse and he had a week off school, more for the behaviours than for the mild flu-like symptoms.  Having then announced that his ear was hurting, we took him to the Ear Nose and Throat doctor. To get to see the doctor you first have to go and get a negative Covid test. The diagnosis was a mild ear infection that might not need an antibiotic, but if it got worse take the antibiotic (Cefpodoxime). This is a β-lactam antibiotic. 

We did cover the non-antibiotic properties of this class of antibiotic in a dedicated post, since many antibiotics have profound anti-inflammatory and other effects not related to killing bacteria.  You can never know with 100% certainty which effect is giving you the benefit.


Autism and Non-Antibiotic Properties of Common Beta-lactam Antibiotics



For anyone interested in trivia. The aerobic mold which forms the basis of this antibiotic, cephalosporin C, was found in the sea near a sewage outfall by Cagliari harbour in Sardinia, by the Italian pharmacologist Giuseppe Brotzu in July 1945. 

If you like sandy beaches like Monty, Sardinia is a great place to visit. Cagliari is in the south, the famous part of Sardinia is Costa Smeralda, on the northern coast, where the celebs go to be seen.

Since Monty’s problem was more behavioral than due to pain in his ear, we started the antibiotic without delay.

Over 5 days, the behaviors began to improve and on day 6 the hair twirling vanished entirely for a day, so clearly something new was going on in his brain.

The mood disorder switched to occasional extreme laughter/happiness, rather than the previous tears.

The behavioral regression started well before the viral infection and ear infection, so it is not just a simple case of a sore throat and a strep infection.

Are all the above symptoms due to PANS/PANDAS?

There actually is a 100% overlap between Monty’s recent symptoms and a list of possible PANS/PANDAS symptoms. Every symptom I listed is on the doctor’s checklist below: -


Description of PANS Symptoms


Description of PANS Symptoms

1) OCD

Traditional OCD presents with mild obsessions and compulsions that become more involved and burdensome over time. In traditional OCD, symptoms tend to be persistent with minor variance in symptoms (often referred to as a waxing and waning). In contrast, PANS OCD presents with a sudden onset typically from mild or no symptoms to debilitating in an abrupt amount of time. Often, parents recall the exact date of symptom onset, and frequently report “it just came on out of the blue.”


Many compulsions are either mental rituals (and therefore difficult to observe) or appear as extremes of an acceptable behavior (e.g., compulsive handwashing). Common OCD rituals in children include: washing/grooming, checking (locks, door), counting, ordering/symmetry, hoarding, restrictive eating, and repetitive questioning.


Emerging research suggests different treatment options are available for children with PANS OCD than for children with non-PANS OCD. Understanding the difference between the two forms of OCD allows appropriate interventions to be implemented.


2) Eating Restriction

PANS children describe various reasons for not eating normally or adequately, such as: fear of vomiting, sensitivity to taste, smell, and texture, fear food is spoiled, or fear of being poisoned. In some cases, the restricted eating is directly related to body image distortions, including concerns about being overweight (even when the child is normal weight and was previously satisfied with their body habitus.)


3) Anxiety

Anxiety frequently presents as constant, generalized anxiety or age-inappropriate separation anxiety.


4) Sensory Amplification

PANS children may become uncharacteristically and intensely bothered by smells, tastes, sounds, and textures, causing difficulties with daily routines, such as brushing teeth, riding in a car, eating, and dressing.


5) Motor Abnormalities

PANS children may exhibit motor and vocal tics, handwriting changes and/or clumsiness.


6) Behavioral Regression

PANS children may display regressed behaviors, such as: baby talk, refusal to carry out age-appropriate grooming activities, tantrums, clinginess, and/or separation anxiety.


7) Deterioration in School Performance

Psychological testing of children with PANDAS, a subset of PANS where strep is the infectious trigger, has found impairments on a visual-spatial recall test, on measures of executive function, and on a dexterity test. PANS children may also experience a decreased processing speed, memory issues, and/or difficulty in math and calculation.


8) Mood Disorder

Depression, mania, irritability, hypersexuality, emotional lability, and rage have been noted during a PANS exacerbation. Moods may change from happy to sad to angry in moments. Reactive rage (as oppose to predatory rage) may start instantaneously and stop as quickly, leaving the child remorseful and confused.


9) Urinary Symptoms

An initial complaint may be urinary frequency. A careful history will often expose additional symptoms. PANS children may develop polyuria (up to many times per hour), frequent urges to urinate, and/or day and night secondary enuresis. These urinary symptoms are not due to UTI, anxiety or OCD type worries.


10) Sleep Disturbances

Polysomnography has demonstrated a variety of sleep abnormalities in children with PANS, including initial and middle insomnia, REM behavior disorder, parasomnias, and/or sleep phase shifting. 


Since I did introduce the term CANS, here is a comparison of PANDAS, PANS and CANS from a recent Italian paper:- 

CANS: Childhood acute neuropsychiatric syndromes


Table 1 - Criteria for PANDAS, PANS, and CANS 



1. Presence of OCD and/or a tic disorder

2. Pediatric onset (Symptoms of the disorder first become evident between 3 years of age and the puberty.)

3. Episodic course of symptom severity Abrupt onset of symptoms or dramatic symptom exacerbations. Often, the onset of a specific symptom exacerbation can be assigned to a particular day or week, at which time the symptoms seemed to ‘‘explode’’ in severity. Symptoms usually decrease significantly between episodes and occasionally resolve completely between exacerbations.

4. Association with Streptococcal infection Symptom exacerbations must be temporally related to Streptococcal infection

5. Association with neurological abnormalities During symptom exacerbations, patients will have abnormal results on neurological examination. Motor hyperactivity and adventitious movements



1. Abrupt, dramatic onset of OCD or severely restricted food intake

2. Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories

1) Anxiety

2) Emotional lability and/or depression

3) Irritability, aggression and/or severely oppositional behaviors

4) Behavioral (developmental) regression

5) Deterioration in school performance

6) Sensory or motor abnormalities

7) Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency.

3. Symptoms are not better explained by a known neurologic or medical disorder (Such as Sydenham's chorea, systemic lupus erythematosus, Tourette disorder, or others).


Idiopathic CANS

Acute onset before age 18 of behavioral and motor signs encompassing

1. Primary criterion OCD

2. Secondary criteria

1) Anxiety

2) Psychosis

3) Developmental regression

4) Sensitivity to sensory stimuli

5) Emotional lability

6) Tics

7) Dysgraphia

8) Clumsiness

9) Hyperactivity

3. Mono- or polyphasic cours


Susan Swedo advises to treat PANDAS with 3 weeks of antibiotics.

Monty’s 2 previous cases of sudden onset motor/verbal tics were resolved by 5 days of Prednisone.  This is a common therapy for a PANS flare-up.  There is a study from Stanford on its benefit.  The sooner you use this therapy, the greater the benefit.

The most important thing with all forms of autoimmune encephalitis seems to be speedy treatment so the condition does not become chronic.  Then you have to use much more invasive and expensive therapies like IVIG and Plasmapheresis.

It is clear that PANS/PANDAS is likely to reoccur.

In Monty’s case the first two instances were very similar.  They were both acute onset tics. The third instance was very different.

Given that Monty’s antibiotic very obviously had a behavioral benefit, we will follow Swedo’s advice and continue for 3 weeks, which is 2 weeks longer than the standard ear infection therapy.

The short course of Prednisone will hopefully complete the therapy and life will go back to normal.

I recall that our neurologist reader, with those sceptical colleagues, did not even need steroids to resolve her child’s problems, NSAIDs were sufficient.  The sooner you treat the symptoms, the less potent the therapy needs to be and the more effective it seems to be.  Some people commence treatment years after the symptoms emerge.



One conclusion to this post might have been along the lines of “My god, whatever next?” as if autism brings never-ending problems.

I rather see it as, why did it take me so long to recognize the symptoms?

The answer to that one is that PANS/PANDAS/CANS, or indeed the broader Autoimmune encephalitis, is a family of conditions.  Just because you saw one set of broad symptoms earlier, does not mean you will not face a different subset of symptoms next time.

The urinary symptoms of PANS were a surprise and worth highlighting.

Autistic regressions should be investigated and treated.

On the one hand, doctors, particularly in the US, do like expensive diagnostic tests.  They want certainly and often struggle to treat ill-defined conditions that they have not been taught about.  They prefer not to tinker around, in fact tinkering is frowned upon.

On the other hand, when very expensive testing is done and it identifies in someone a combination of rare genetic dysfunctions associated with autism, nobody thinks to look up each gene and see how to compensate for the usual loss of function - that does not seem to count as medicine.  The genetic diagnosis is crystal clear, but the therapy would definitely require some tinkering around, to perfect it.  But, such tinkering is so frowned upon that the “specialist” just stands well clear and moves on to the next patient.   

Tinkering around is an essential part of fixing practical problems.

In my case of autism, I have not paid $925 for the Cunningham Panel of PANS/PANDAS tests, or even a strep test, or a urine culture test.

The cost of treating the 2 apparent PANS episodes in previous years was about $5 dollars each time.  The cost of the current episode was more, about $15, plus the cost of a visit to the ENT doctor and the required Covid test.  Our neurologist reader likely spent even less for her NSAIDs.

PANDAS, PANS, CANS or just autoimmune encephalopathy, it does not really matter what you call it, prompt intervention will likely resolve the symptoms.