Friday, 11 March 2016

Treating Adults with Autism?


Almost the entire focus of treating autism is targeted at young children; only rarely do you hear about clinical trials involving adults, yet we are often reminded that autism is a lifelong condition.

For those of you that read the proposed guidelines to drug companies developing autism therapies, this issue raised its head again.  Will therapies effective in children be effective in adults (and vice versa)?

There are many issues here.  On the one hand there is great caution about giving drugs to very young children, but there is the realization that many therapies may only be effective if given at an extremely young age.

I only started treating the biological dysfunctions in Monty, now aged 12, when he was 9 years old.  By good fortune the first therapy (bumetanide) I tried was highly effective, otherwise this blog would not exist.

Had that Bumetanide clinical trial been published 5 years earlier, would I have given my then 4 year old son that same drug?  Probably not.

With what I now know, I would be happy to give Bumetanide as soon after birth that autism was even suspected.  (To the trained eye, this is but a few months old)

The effect of no treatment

For three years I have been developing a personalized autism treatment, Monty’s Polypill, and I think it works well, but a few weeks ago we decided to see what happens with no treatment at all.

This did provide some useful insights into treating young adults, as opposed to young children.

The first thing is that all the new skills that have been acquired, at close to neurotypical speed, in the last three years, did not just fade away. 

The old obvious repetitive behaviors/stimming/stereotypy did not return, but more subtle new ones did.  (no NAC)

He could still play his piano nicely with his teacher, but his interest in playing out of lessons faded away as did his skill level out of lessons.

He showed an occasional aversion to doing anything new, for example when his assistant came in the afternoon, I told him to go outside and meet her.  He could happily open the front door (his normal routine) but was not able to walk though it and meet her by the gate.  (no statin)

When I offered to go with him, he had a brief tantrum. 

He started asking permission to do things he knew how to do, which some people saw as a positive.  When lying in bed at 9pm he called out “Mum can I read a book”, rather than just picking one from the shelf by his bed and when at a small birthday party he had to bend down to light the candles, he turned round and said “can I squat?”  Most people thought that was good use of vocabulary, I was thinking “just do it”.  (statin effect)

I received comments like “how patient he is”, or at school  words like “peace” and “peaceful”.  I was thinking how passive he was. (no bumetanide/low dose clonazepam)

While there was no glaring loss of cognitive function and spelling tests and maths test at school were not showing any deficit, I noticed a loss of ability to develop new skills. 

We use an excellent online program called Math Whizz and one thing we were learning was to how to use the calendar.

Typical questions would be:-

“What date is the second Friday in May?”
“What date if the first Monday in December?”
“What day (of the week) is the last day in June?”

You first have to click on “May” to get the calendar to turn to the correct month and then you can figure out the answer.

To my surprise, while still on the Polypill, Monty was getting pretty good at this exercise, on his first attempt.

However, a few days later, when we tried with no Polypill, he was struggling and as the days passed he got worse and worse.  (chloride levels gradually rising?)

There was even a return of the sensory overload that causes many problems for some people with autism and also Asperger’s.  Even the sound of a crow became disturbing.  Both Acetazolamide and Bumetanide are used to treat Hypokalemic Periodic Paralysis, which is a more severe form of Hypokalemic Sensory Overload and at least some types of Autistic Sensory Overload are a subset of this.

After two weeks of Bumetanide and Potassium the sound over-sensitivity has gone again.  It did not go away immediately.

Pleiotropic effect of Verapamil

While I initially identified the calcium channel blocker, Verapamil, as an effective inhibitor of aggression and SIB triggered by allergy/mast cell degranulation, I was once asked if I thought Verapamil might have pleiotropic effects in Monty.  Having stopped using Verapamil and then restarted it, all outside of the problematic allergy season, I have all the proof I need in my n=1 case.  Life is better with a little Verapamil; his calcium channel dysfunction goes beyond those in mast cells.

Verapamil was the last element of the Polypill that I re-started; I was rather hoping it would show no effect outside the allergy season.  Only after adding it back did things really return to what has become our "normal".

There is after all a vast amount of evidence linking calcium ion channel dysfunction and autism.

My Verdict

I think many people would be very happy to have a passive child, who can sit for two hours in restaurant.

Most people do not notice the fading of good behavior, because their overriding concern is the lack of any “bad” behavior.  So a bad behavior is followed by a “is this better?”, rather than a “Wow, do you know Monty did today …”.

I prefer a child who can learn, even if that means he may get fed up from time to time, and show it.

I was pleased to come home earlier this week and find Monty sitting alone playing his piano beautifully (no prompting, no reinforcement needed), with his music book laid out in front of him, playing one melody, turning the page and playing the next one, while his big brother had gone upstairs to play his computer games, because little brother does not need him. 


Intervention in Adults

Other than halting self injurious behavior (SIB), I am far from convinced that most people would even notice the difference if you took an adult with classic autism and started to treat him.

At that age, passive and patient is what most caregivers want.

So I see little prospect that “corrective biological therapy” will ever be initiated in many adults with more serious autism;  they will continue to be “tranquilized”.

Many adults with Asperger’s and high IQ do their own research and self-treat; some even read this blog. For them, even a small biological "improvement" can have a welcome effect on well-being. Good for them.

Intervention in Young Children

The best way forward is to intervene immediately after diagnosis.  In the US/Canada that might be two years old, but more like four years old in Europe.

If I was a Roche or Novartis, this would be my target:- non-verbal, non toilet-trained toddlers who make no eye contact, possibly cry a lot and tend to be kept at home.


  1. Peter,I am very disappointed by this post.At first I had to check to see if this was a post by a guest blogger.I know you are a big advocate of genetic,metabolic,and immune testing to try to find the root causes of autism.Identifying and treating these root causes should be of the utmost importance,no matter how old the person is.Many types of autism and related neurological deficits have been found to be due to underlying immune or metabolic disorders that can be treated.This includes behaviors like self abuse,that can be due to treatable seizures.The fact that nearly all treatment and research is geared towards young children,is an international disgrace.

    One of the goals of treatment should not only be to prevent behaviors like self abuse or wandering,but to develop as many independent living skills as possible.Starting with basic things,like dressing oneself,remembering to bathe,or shopping for,and preparing,one's own food without assistance.Even if the person is never fully capable of living on their own,the more basic life skills they can develop,and practice independently,the better.

    You seem to forget autism really is a spectrum,it isn't just the high functioning on one end,and the severely disabled on the other.There are all sorts of shades of grey and combinations of symptoms in between.It was quite a surprise to me,when I learned there were people on the spectrum,who are very high functioning,but otherwise nonverbal.People who are successfully able to complete a college education,with the aid of electronic communications devices and computers,even though they will never be able to speak a word.Then there is the reverse of this,which was the situation I was in,before my cerebral folate deficiency was identified and treated,nearly seven years ago.Someone who has intact language,but is otherwise very low functioning,engages in wandering and self abuse,and relies on a parent,or other care giver,for most of the basics of life,even though they are able to communicate.

    1. Roger, my point is not that adults should not be treated. I think everyone should be treated.

      As approved therapies emerge, I think society will choose to treat children, but adults will generally get left behind. This is sad.

      My point is that most caregivers themselves will not want to treat adults because, unless there is aggression or SIB, they take the easy option of having a low functioning passive adult.

      Plenty of people found my son, when not treated for two weeks, to be perfectly fine, I did not. They thought passive was a positive feature.

      I extrapolate this to suggest that an adult without SIB is unlikely to get a new treatment initiated, because it is easier to leave him/her untreated. This is not good, but I think it is highly likely.

      Adults with Asperger's can choose for themselves whether to be treated. So the least affected adults may end up being the most treated.

      I think the effect of treating a 40 year old who responds to bumetanide will not be seen in the same way as the effect on a 4 year old. So I think often the 4 year old will get the drug and the 40 year old will not. This is not the way I would want it, but I think it is what will happen.

  2. Sadly, I agree with this wholeheartedly except that I think "progress" by the standard of the caregiver (whether it be an elementary teacher or staff in an institution) is for the person being cared for to be calm and sedated. The teacher for my son says he has a "great day" when he is calm but what does that mean. Of course, throwing tantrums nonstop is undesirable but the most popular drugs for attenuating aggression and SIB are also proven to be some of the worst for general cognition.

    Also a child's brain is very different from that of an adult's, especially with respect to very important milestones in neurodevelopment such as childhood amnesia recedes (around age 8 when memory becomes less plastic and more sticky), to the teenage years when massive changes to the white matter ensue to make the neural networks in the brain more efficient for doing and less efficient for learning. In the autism brain the surplus of brain neurons in childhood gradually give way to having a deficit of neurons in adulthood, eventually sometimes leading to dementia at an earlier than normal age (including skill loss and everything else that goes along with it). Also, the immune system changes greatly from that of a child to an adult and evidence suggests there is a very strong immune component to autism symptoms throughout the lifetime of those afflicted.

    Furthermore, the "whack the brain with massive doses of cognitively depressing behavior dampeners" (i.e. the person is never angry or happy but rather just zombified) method seems to work in both child and adult populations, hence why it is so common among doctors to use one-size fits all drugs in both populations, even though it is no different than barbaric surgical procedures like the frontal lobe lobotomy which used to be standard practice among difficult persons in institutions.

    Also sadly, studies done on psychotropic drugs for children almost never measure long-term changes in IQ (politically correct I suppose), and since many erroneously feel that IQ is fixed in adulthood (until dementia sets in), long-term changes in the adult population never seem to be measured either.

    The hippocratic oath says to "do no harm", but apparently robbing someone of their mind when it comes to autism seems to be treated as an exception by many medical professionals.

  3. Feel free to delete this post as it is a little off topic:

    On the therapy front, here is a new treatment strategy for addressing genetic dysfunctions in one type of autism via modulation of two specific neuron ion channels:

    I have not read the full paper yet (4:45 AM here) so I won't comment any further.

  4. Thanks for this article Peter, I've been wanting to ask you for some time now of the consequences on Monty if you stopped the PolyPill.
    And sadly I do agree with your verdict.
    Meanwhile the bumetanide trial continues, not much to signal here. Checked the K+ this week and it came back normal. I do notice allergic reactions these days, so it may be impeding. Will keep you posted.

  5. I thought I'd chime in here a bit off topic: I've sometimes used furosemide as an alternative to bumetanide. Recently learned there is a sustain release form of furosemide. Perhaps this will have better properties of more consistent calming qualities than what we're currently using.

    1. There was early research on intranasal bumetanide, this might be the perfect solution for people using it for autism/schizophrenia. Crosses the blood brain barrier and less diuresis.


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