Synchrony 2020 and Back to School with Covid

 

I am giving a presentation in November at an online autism conference called Synchrony 2020. It is organized by a group of parents of children with autism.  You can read all about it here: 

 

https://synchronysymposium.com/

 

If you want to attend this virtual conference there is a coupon code for readers of this blog: -

EPIPHANY

I am told the coupon code applies only to Early Bird and Regular Price, not to the Day Pass. 

Our doctor reader Agnieszka gave a presentation at this event last year.

This year Dr Ben-Ari is going to talk about Bumetanide and I am then talking about 8 years of using Bumetanide.

The proceeds go towards the Brain Foundation’s funding of autism research. 

The Brain Foundation

Our mission is to support translational research that will lead to the development of FDA-approved treatments and an improved standard of care for co-morbidities in individuals with autism spectrum disorder. 

I suppose my mission is to take the fast track, by repurposing existing approved drugs and skip the part requiring $30 million and 15 years to get FDA approval, specific to autism, for each drug.

As you would expect, most of the presenters are medical doctors or medical researchers. 

I did point out to the organizers that many of these people are not going to like what I do.  They spend decades researching autism and here comes Peter, not a doctor, developing therapies by repurposing existing drugs. 

There will be nothing controversial in my presentation, I am just talking about the effects of long-term Bumetanide therapy.

Doctors who have a child with autism do see things differently. I had a British pediatrician come up to me at an event and just about the first thing he said was “I want to do for my daughter, what you have done for your son”.  Good luck to him.

I did my bit to help the conference organisers by asking Dr Ben-Ari to present about Bumetanide.

Dr Ben-Ari does read this blog and I know he does not entirely approve of my methods.  If I did not have a child with autism, I would also not approve of my methods. Necessity is the mother of invention.

A classic example of medical dithering appeared in a recent meta-analysis of the research into the use of NAC in autism.

The review concludes that NAC is safe to use and does reduce some key symptoms of autism, but then adds the caveat “However, further evidence should be sought before a general recommendation.”

So, NAC is cheap, safe and effective, but don’t use it. 

Effectiveness of N-acetylcysteine in autism spectrum disorders: A meta-analysis of randomized controlled trials

Conclusion: We concluded that N-acetylcysteine is safe and tolerable, reduces hyperactivity and irritability and enhances social awareness in children with autism spectrum disorder. However, further evidence should be sought before a general recommendation. 

Incidentally, the FDA do not seem to like NAC being sold as a supplement in the US.  NAC is very popular and it is included in hundreds of OTC products, so banning it would not go unnoticed.  They are not concerned on safety grounds. Some drug producers seem to want it to be exclusively an expensive prescription drug. 

I think the Brain Foundation has noble goals and good luck to them.

I suspect Dr Ben-Ari’s what will be 15-year push to get Bumetanide adopted as an approved autism therapy will have the most transformative impact. Good luck to him too. 

 

Back to School with Covid 

After several months break, Monty started back at school on September 1^st.  The only significant difference from before is that everyone is wearing a mask. School is 5 days a week from 8.30am to 3.30pm, as before.

Nobody likes wearing a mask, but it is just something you currently have to do.  Monty, like most people with autism, can cope just fine wearing a mask.  Some people need to practise, others do not.  Without a mask there would be no school.

Online learning at home actually worked very well, with lessons via Zoom.  We are not new to the idea of home schooling; Monty’s 1:1 assistants have been teaching him at home since he was 4 years old.  Our current assistant was happy to come during the lockdown period.

It is much more fun to actually go to school.

Monty, now aged 17, attends a mainstream international school that follows the English curriculum.  He has no IEP (Individual Education Plan), so he does the same work and has the same tests as everyone else. Because I held him back 2 years at the age of 9, his classmates are 15-year olds.

He is remarkably well included, particularly by the girls.  In kindergarten and junior school there often is a little girl who takes a special interest in the cute little boy with classic autism, but this can fade away as the girl heads to puberty and the cute little boy becomes adult-sized, with not so cute classic autism.

I heard an endearing anecdote from Monty’s Assistant.  Two of the girls in class have been reading on the internet about boarding/residential schools. They found a school they liked the look of in Holland and asked our Assistant “would Monty’s parents allow him to come with us?  Look, it says they have 24-hour provision for those with special needs”.  I doubt they will actually be changing schools, but it was nice they kept Monty in mind. 

As I mentioned in previous posts, it does help to have a younger Assistant, if you want to promote social interactions with teenage classmates. Our Assistant has a sister the same age as Monty’s peers.

I did ask our Assistant why she thinks people are so nice to Monty; there are other people at school who are ignored by their peers and are pretty miserable. “Oh, he’s so cute, he says funny things in class and acts differently, look how he sits nicely and he’s the only one that eats properly; he also knows what is on the lunch menu and people come and ask him”, was the first response.  There must be more to do with it than that.   

There is a girl with spots who everyone ignores, do they really ignore her because of her spots?

As regular readers may recall, there is an interesting therapy for Aspie girls with spots.  Spironolactone, which lowers male hormones, will reduce acne in girls, but will also affect ROR alpha which determines the expression of many autism genes. So, both acne and autism might improve. Then add a squirt of oxytocin, or an oxytocin inducing gut bacteria and watch what happens.

I did see an interesting paper about children with autism who are flourishing at home with remote learning during covid.  The paper is about high functioning children (HFA in the text below), but some children with Classic autism also prefer life at home.

 

Debate: Remote learning during COVID‐19 for children with high functioning autism spectrum disorder 

Over the past 6 months, many children with HFA have told us they enjoy learning from home for a variety of reasons. They do not need to worry about whom to sit with at lunch, or be annoyed by the frequent changing classes, or have to tolerate the aversiveness of the school bell ringing, or the smell of the cafeteria. They report feeling liberated by not having to try so hard to fit in with the neurotypical world while trying to thrive academically. The anxiety, demoralization, and depression that have plagued them when in school have dissipated. Ironically, then, COVID‐19 has allowed many children like Stephan, who are oftentimes silently suffering, to flourish at home in ways that they could not do while in the regular classroom setting. We speculate that by eliminating the demands of the elusive, ‘hidden curriculum’, such children now expend their emotional and cognitive resources on the formal curriculum, which has resulted in improved grades and improved mental health. The following example illustrates this point … 

I advocate teaching the "hidden curriculum" to pre-teen Aspies, so they do not have a miserable time in high school and later in life, perhaps becoming an autism self-advocate. I would also use the buddy system to pair them with a slightly older outgoing neurotypical girl.

It looks like many of the parents of children with severe autism are ones that really do not like remote learning during Covid.  In some cases, they do not try to engage in remote learning.  If they were already teaching their child pre-Covid, it would not have been so difficult.

In some countries public schooling provides a seamless service year-round picking up the child from home and bringing him/her home at the end of day, setting both parents free.  You then become totally dependent on this level of service.  We never had that kind of support, so had to create our own independent approach.