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.
