Take Away Points from Thinking Autism 2019 Conference in London

This is not a summary of the recent conference I attended in London, it is just the impressions I left with, which will be very different to those of the delegates and the other speakers.

Hopefully I do not upset too many people.

Here is information on the conference and PDF versions of the two presentations I gave.

This is the only autism event I have ever attended, other than a discussion over lunch at a university reunion where someone organised a meeting for those from our year with an interest in autism. Other than that, I have really only ever met a handful of autism parents face to face.

I did meet our reader Petra in Thessaloniki a few years ago.  As expected, Petra is a very nice person in reality and not just in the comments on this blog

This weekend I met face to face with Agnieszka, Natasa who comments frequently and helps run the Think Autism charity in the UK, as well as many others who comment less frequently. I met my first MAPS-type doctor, Richard Frye and had a chat over lunch. It was a bit one-sided because I know a lot about him and his research and he knows nothing about me and my online collection of research.

I did meet some of the UK doctors who have a child with autism and an interest in doing something about it.  I genuinely wish them all the best in reforming the system.

Yes, I do actually exist

One teacher from North London said that she had been wondering if I really exist. Now she knows I do.

Why does everyone seem to know you?

There is a magazine for autism parents in the UK and the lady who runs it came up to me to give me her card and asked why she had never heard of me, but so many others had.  The world has changed and blogs have advantages over print media - people like the comments and the hyperlinks.

Yes, an Alternative Reality for Autism

I was told a few years ago that I appear to live in a different world to most other people, at least when it comes to autism.  I suppose that is true and I do only very rarely encounter that other world.  This conference was one of those rare events.

In my world anything is possible, until proven otherwise. I prefer to keep it that way.

Many people do have a choice and over the decades you will get to see the consequences of those choices; for better or worse.

Since not all parents are science wizards, there should be some support from both public health and educational services to ensure every child has a basic level of provision.  That basic level is not very high anywhere in the world.

If you want more you have to go and find it.

How much effort do you really want to make? What short term discomfort are you willing to take to ensure a brighter future?

I am surprised how much variation there is.  Some parents will do just about anything, while some others do nothing.

Personally, I am a proactive person. When something is broken, I try to fix it. If the “expert” gives me lame excuses, I do not accept them; I look for different solutions and maybe a different “expert”. 

Clearly, I am far from typical.  Thank god.

I do not lie in bed at night wondering what will happen to my son when I am dead.  I do not get depressed about the curtailed life expectancy in severe autism; rather I think it is up to me to make a difference while I am still very much alive.  The future is very much determined by past actions.

Other people are very welcome to visit this alternative reality where an open-minded science-based approach is encouraged.  An open mind is actually more important than a clever mind.

I did mention to Dr Frye about Potassium Bromide (KBr) for autism/epilepsy and his first reaction was “child protective services!”, someone else once mentioned “that is for pets!”.  Actually, Potassium Bromide (KBr) was the original human drug for epilepsy and to this day is successfully used in Germany for treatment resistant pediatric epilepsy. It saves lives.  Untreated epilepsy will kill you. About 30% of epilepsy does not respond well enough to mainstream therapies. Numerous modern studies regarding KBr have been published.  You just have to keep an open mind.  The Germans, Japanese, Chinese may know something Americans do not.

I did get indirect feedback that an autism parent showed the German/Austrian KBr research to a leading US neurologist, I think it was Dr Chez, and his comment was that he wished he could prescribe it to patients. For the moment in the US it is dogs with epilepsy rather than children with Dravet’s Syndrome and others that benefit.

Italy has some nice doctors

I have noted before on my blog that within Europe, Italy seems very different. We had a presentation from a Gastroenterologist from Turin who has been studying the bowels of kids with autism for 15 years and regarded it as a perfectly normal thing to do. No UK Gastroenterologist would do this. We had a chat about Milan, which I am now becoming more familiar with due to my elder son studying there. The top Italian researcher Dr Fasano, whose research I have covered in this blog, has moved to the US.  (one less clever doctor in Italy).

Israel has some nice doctors

We took Monty to Israel earlier this year, but it was to see the historical sites rather than to see the doctors.  There were a couple of speakers from Israel talking about cannabis in autism. They were really interesting and “well-adjusted”, they know their area of research is a bit controversial, but they find a way forward. I did cover in a recent post that you can use PEA instead of cannabis and they are aware of this, but cannabis is their research drug. They say that PEA has fewer side effects.

In their medical practise they actively treat autism, which no medical doctor does in the UK.  

Poland has some nice doctors

We already knew that Agnieszka is busy helping people in Gdansk and much further afield.  She is busy helping the UK charity Thinking Autism.   A husband and wife research team came from Lublin to talk about the ketogenic diet with a very thorough science-based presentation. They suggest a PET scan might identify responders. I think this is actually just one very specific sub-type, because it relates “simply” to altered glucose uptake to the brain being the underlying biological problem.

America has the most Autism Doctors, by far, at least one of whom is also a nice guy

There are so many horror stories of American DAN-type doctors charging huge fees for consultations and testing, you might imagine them all to be evil. I have never consulted a DAN/MAPS doctor, but Dr Frye definitely is a good guy and very willing to share his knowledge with others.

I did actually put him on my Dean’s list a while back, with some encouragement from our reader Roger.

The United Kingdom has no “Autism Doctors”

Many of the parents I met were English and very many of them had all been seeing the same doctor, who was then banned from seeing patients with autism. In the United Kingdom autism is untreatable.

If you want treatment, call it something else like auto-immune encephalopathy.

I am so glad I do not live in the UK

Many parents in the UK really struggle to achieve anything meaningful in regard to treating autism. I am glad to live in a different reality where the main limiting factor is the science itself, not the absurd things the UK parents have to deal with.

Bumetanide Clinical Trial Success

We had the absurd situation recently when it seemed that in the second largest country in the EU, almost no hospitals wanted to participate in the Bumetanide Phase 3 European trial for autism.

Fortunately, one of the parents at the conference is a Psychiatrist working in London. He has an interest in autism, because his child has it and he is already involved in the Balvotam trial for autism. Hopefully his hospital will become another centre for the trial starting this summer, that would be a big success.

Come on Agnieszka, see more Patients

Lots of people ask me for my email address and you may have noticed I always encourage them to contact me in public on this blog. I do this for several reasons including.

I am not a doctor and I am not giving medical advice. The comments are just a public discussion tagged on to a blog written by a parent whose albeit lengthy scientific education was not in biology.

Some comments and the ensuing discussion are really interesting for other people and it would be a shame for it to be hidden away.

I do think people in Europe should be able to access safe, evidence-based, off-label therapies, of the kind that Dr Frye is openly prescribing at the Phoenix Children’s Hospital. This is not really permitted in the United Kingdom, although there is a tiny bit of “wriggle room” if you have money, perseverance and some knowledge yourself.

I did ask Agnieszka if she is going to get into the same kind of trouble in Poland that any doctor would in the UK, if she openly held an autism clinic. Apparently not. Is her husband going to like it? I suppose we will find out.

How many people would actually come to Poland for a one-stop diagnostic work-up, where you could choose from a menu of MRI, whole exome screening, sleep EEG, 24 hour EEG, full blood work up testing all the things Dr Frye would test in Phoenix, once you could actually get an appointment to see him. As our reader Roger has told us, it is not so easy to get an appointment to see Dr Frye.  I suggested having Dr Frye also review the data and that if it was clear that there were GI problems there could be a referral to our new friend in Turin who has been treating the guts of kids with ASD for 15 years. You could then proceed to actually trial the off-label drugs that were indicated. 

None of this is cheap, but it is much cheaper than doing the diagnostics in the US, or the UK if you could actually access it.

Then I was thinking why leave it at evidence-based therapies for autism. Why not treat other poorly managed neurological diseases like Multiple Sclerosis (MS), there are so many things that can be done and actually much cheaper than in the US.

Then I came down to earth and realized that actually very few parents, at least ones from the UK, would take out their wallet and pay for all these tests, even though it would be a fraction of the cost that they would pay in US.

In the United Kingdom people expect their healthcare to be free from cradle to the grave. If it is free, although you do pay via your taxes, you are not the customer. The patient is the consumer, but he/she has little say in the therapy. If you need eye glasses, you might spend a day trying on frames in different shops to see what suits you, but if you need an operation you will have little say in the type of operation, you will get what the guidelines says is the cost effective therapy. If you have prostate cancer, you will not get proton beam therapy, that was developed years ago to minimize the side effects by focusing the radiation onto only the affected tissue rather than zapping all the surrounding tissue and giving you possible severe side effects.    

Who would invest a few thousand pounds/dollars to diagnose their child’s autism as accurately as possible? And then start treatment.

It would be nice to think there would be a long line. I think there would initially be a line for prescriptions for bumetanide. The real idea though is to make a thorough investigation to rule out treatable ID, single gene autisms, metabolic dysfunctions etc, not to be a prescription signing service.

So, as I said to Agnieszka, don’t plan to give up your day job any time soon.  Have treating autism as a side-line, make a list of therapies that you think are evidence based. It would not include things like the Nemechek protocol, I think it would include things like Bumetanide, Dr Frye’s Leucovorin, Propranolol and the many existing drugs already tested in clinical trials.  For Nemechek you can buy his book, no doctor is needed.

Where are all the younger parents?

Given that I have one son already moved out of the country to go to University, I was expecting to be feeling old surrounded by all those young parents working out what to do with their very young children recently diagnosed with autism.  There were some parents in their 30s, but most were much older.

It was nice that at least one Grandpa was there, looking for ideas for his adult Grandson. I did actually make a point of pointing him towards the science relating to his issues.

The Microbiome comes from the Mother

This may be obvious, should not be forgotten and sounds quite catchy.

It does not matter so much what is in Dad’s microbiome. It does matter what is in his epigenome and of course his regular genes matter.

Mum/Mom provides here half of the child’s regular DNA, her epigenome, all of the mitochondrial DNA and all of the microbiome that filters through to the child during pregnancy and during delivery (assuming there was no C-section).

Conclusion  

Having spent a couple of days mainly with British parents dealing with autism, I came home and told everyone how glad I am that I do not live there.  It would drive me crazy!

They can wait for years to get a diagnosis

No doctor is supposed to treat autism, even comorbidities may go untreated, because that might imply you are treating autism.   But many people still think they have a world class healthcare system (in some areas this really is true).

US style free early intervention for very young children does not exist. 

They have a very backward-looking Autism Charity (NAS) that is dominant and supposedly represents them.

Provision of special schools is highly variable and often parents take legal action to get better provision.  This means the less able parents that do not know how to play the system have even less resources allocated to their kids. 

They have about 2,000 young people with autism locked up for years in small, poorly supervised, private mental institutions. Just today another horror story has been released about the abuse that can occur.

Whorlton Hall hospital abuse and how it was uncovered

The end result is some pretty browbeaten parents.

I was once asked if I would speak in the US and I asked what they would like me to speak about, it was very much TREAT AUTISM NOW !!!  Those are my kind of people.  More dynamic, pushier and demanding more – it is the only way to be.

The Israeli clinicians at the conference told us the only way they managed to move therapies, including cannabis, forward and actually treat autism was pressure on the government from parents. I guess Israelis know how to push. Now UK parents fly to Tel Aviv to treat their child with autism, some others fly to California and I met one nice lady who takes her daughter to Italy.