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.

 

 

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445685/figure/F2/

 

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.

 

https://pubmed.ncbi.nlm.nih.gov/?term=Blaxill%20M&cauthor_id=34278527

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. 

  

Conclusion

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.