Accept Autism or Treat It?

Back in the old days autism was a hidden condition and those affected were usually tucked away in institutions. A trend then slowly developed towards inclusion, with the Individuals with Disabilities Education Act (IDEA) being passed in 1975 in the US.  Other countries have slowly moved in this direction, with France only this year finally following suit.

Having moved on from hiding autism, we then had the new diagnosis of Asperger’s appearing in the 1990s and so autism became a much broader diagnosis. Then followed the idea of awareness and diagnosing adults.

Now we have an ever-growing number of people diagnosed with this “autism” thing, that other people are supposed to be aware of. Is it a disease, a dysfunction, a disability or just a difference?

Most importantly are you supposed to treat it, or just accept it?

I recently watched a BBC documentary where a doctor was the presenter and she was talking about schizophrenia. She said that at medical school she was taught that there are medical problems and there are mental health problems, for some reason she was taught that mental health problems are not just medical problems of the brain. Somehow mental health problems are supposed to be different and not based in biology, where did that idea come from?

The program went on to show that about 8% of schizophrenia appears to be caused by NMDAR antibodies. This is a condition where antibodies attack NMDA receptors in the brain, this causes hallucinations and other symptoms that a psychiatrist would diagnose as schizophrenia.  Rather than treating lifelong with anti-psychotics, the patient needs immunotherapy and can then resume a normal life.

It looks like 30% of modern autism is associated with cognitive impairment leading to a measured IQ of less than 70. This is intellectual disability (ID) to autism parents and mental retardation (MR) to the rest of the world.

The interesting finding in this blog is that some MR/ID is actually treatable. I did suggest to the Bumetanide researchers that they should include measuring IQ in their clinical trials.

I do not see how anyone could object to treating MR/ID, even those parents with Asperger’s who find the idea of treating their child’s severe autism to be repulsive.

Maths, Autism and Hans Asperger

Some people with Asperger’s are brilliant at maths, and I think these are the ones that Hans Asperger was mostly studying in Vienna in the 1940s. Lorna Wing came along in 1981 and then Uta Frith in 1991 and translated into English one of Asperger’s 300 papers, the 1943/4 “Die Autistischen Psychopathen im Kindesalter” and then named autism with no speech delay as Asperger’s Syndrome.

In 1994 the Americans adopted Asperger’s as a diagnosis and then rejected it two decades later in 2013 (DSM5).

In Asperger’s 1943 paper he described Fritz, Harro, Ernst and Hellmuth, who he termed "autistic psychopaths”; all four had high IQs and Asperger called them "little professors" because they could talk about the area of ​​their special interest in detail and often accumulated amazing knowledge.

I think Asperger’s should have been left as the "Little Professor’s Syndrome" (high IQ only).

In 2018 some people have realized that from the mid 1930’s almost all people in high positions in Austria and Germany were implicated in some pretty evil Nazi programs, including killing mentally disabled children. Asperger, being a senior psychiatrist at the University of Vienna, obviously played a role, not wanting to pay a visit to the local Gestapo basement.  He was living in a police state, where people tend to do what they are told.  Unlike most of the University medical faculty he was not a member of the Nazi party.

The particularly evil Austrian psychiatrist was Dr Emil Gelny, who modified an ECT (Electro Convulsive Therapy) device to give his subjects lethal shocks. Having personally killed hundreds of mental patients, after the end of the war he escaped to Baghdad, continued practising as a doctor and lived till he was 71. He was never brought to account and Mossad clearly never paid a visit, so I guess there were no Jewish victims.  His highly publicized use of ECT is one reason why it is little used today, even though it does seem to help certain otherwise untreatable conditions.

What surprised me was that in 1930 (before the rise of Hitler) half of the doctors in Vienna were Jewish and indeed half of the Vienna medical faculty were Jewish. So not so anti-Semitic in 1930.  All these doctors had to leave and so the young Hans Asperger made rapid career progress.

Things were not all rosy elsewhere.

I recently read that in London in the 1950s Jewish doctors struggled to progress within the faculty of medical schools and so some emigrated to the US.

We should also note that the Nazis took their inspiration for eugenics from America, where it backed by well-known names such as the Carnegie Institution and the Rockefeller Foundation. California, which we now might consider very liberal, was the centre for forced sterilization.  Between 1907 and 1963 over 64,000 individuals were forcibly sterilized under eugenic legislation in the United States.

So, I think Asperger deserves a break, he was likely no better or worse than other Austrians, unlike most he did not join the Nazi Party. Wing and Frith (a German) were naïve to name a psychiatric syndrome based on the work of an Austrian written during the Nazi period. I think you would not name a reservation for native Americans after General George Custer. 

Back to Maths

One group of kids with severe autism do have near/distant relatives who have remarkable maths skills but were never diagnosed with anything other than being a bit odd.

Monty, now aged 14 with ASD, had great difficulty with even the most basic maths until the age of 9, so much so that we did not bother to teach it, we focused on literacy.

Five and a half years of drug treatment has produced a boy who is now great at maths, at least in his class of 12 years olds.

Coordinates, no problem; negative numbers, no problem. It still now shocks those who knew him from before.

Today I received a message from Monty’s assistant at school and a photo of his classwork, where he is solving simple equations like
7x - 6 = 15

That is not a complex problem for a typical boy, but at the age of 9, after 5 years of intensive ABA therapy, we were still challenged by the most basic single digit addition.  

Nice neat handwriting

Should you treat autism? 

Pretty obviously I think autism should be treated. I would favour treating all types of genuine disease.

If you can treat it, I’d definitely call it a disease.

I would treat people with Down Syndrome to raise their IQs to improve their quality of life and I would also treat them preventatively to avoid early onset Alzheimer’s, which they are highly likely to develop. By the age of just 40 years old, studies have shown significant levels of amyloid plaques and tau tangles, which will lead to Alzheimer’s type dementia.

If you cannot treat it, then you’re just going to have to accept it.

But how would you know you cannot treat it, if you do not at least try?

Since there are hundreds of types of autism, there is no one-stop treatment shop for autism. For medical advice you should go to see a doctor, but mainstream medicine believes autism is untreatable. Today it is really up to the parents themselves to figure out what, if anything, to do.  Dr Frye might suggest you try Leucovorin, B12 and NAC; some DAN doctor will tell you it is all about candida; another will treat everyone with cod liver oil; another will blame parasites; most will blame vaccines.  One lady will charge you large amounts of money for her genetic tests, baffle you with complicated looking charts and then sell you her supplements by the bucket-load. This blog suggests numerous therapies may be partially effective in specific people, a case for personalized medicine.  My Polypill is what works for my son's autism; it is nice to know it works for some others, but it does not work for all autism, that would never be possible.  

With schizophrenia, you could start by treating that 8% with NMDAR antibodies via a science-based medical therapy; this has got to be a big step forward over psychiatric drugs.

We have gone from aged 9, struggling with: -

5 + 2 =  ?

To aged 14, solving worded maths questions, where you have to create the formula and to neatly solving simple equations like:

7x – 6  =  15                  

In algebra there is no doubt effective treatment wins over acceptance.

There is more to life than algebra, but it looks pretty clear that going through life with an IQ 30+ points less than your potential is a missed opportunity. 

Trivial autism

Many people with mild autism and an IQ much greater than 70 are happy the way they are and do not want treatment. For them autism is not a disability, it is just a difference, so we might call it trivial autism.  Unless years later they commit suicide or hurt other people, then it was not so trivial after all.

Unfortunately, some people with trivial autism will go on to produce children with not so trivial autism.

Then you end up with situation that the adult can block what is in the child’s interest, just like deaf parents who refuse their deaf child to have cochlear implants to gain some sense of hearing. Cochlear implants are only effective when implanted in very young children, so by the time you are old enough to have you own say in the decision, it is too late.  Some deaf parents do not want hearing children – odd but true.

So, I come back to my earlier point better to treat ID/MR, don’t even call it treating autism.

How can the Asperger’s mother then refuse treatment to her son with autism plus MR/ID? She can still be able to celebrate her difference, while he gets a chance to learn to tie his own shoe laces, put his shirt on the right way around and do all kinds of other useful things.

So, focus on the 31% of autism? 

CDC - Community Report on Autism 2018

What was the intellectual ability of the children identified with ASD?

                     
Unfortunately, in the research trials they often exclude severe autism, so they exclude people with epilepsy, people with MR/ID and people will self-injurious behaviour (SIB). The very people who clearly need treatment are excluded from the trials to determine what are effective autism treatments. Rather odd.