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Thursday, 19 September 2019

Back to School Again

There have already been several back-to-school posts in this blog and I did wonder if we really need more, but it is good to hear something positive about severe autism.

There are many blogs about severe autism on the internet.  They tend to start when the child is very young and the author is upbeat and optimistic about all the challenges ahead.  ABA is wonderful, homeopathy is great, the DAN doctor and the Zyto scan are so impressive and then they usually fade away as the reality sets in of dealing with a child who is no longer a cute youngster anymore and their autism did not go away, it became more evident.

If you want to read about the reality of older children/adults with untreated severe autism you can follow the blog of the US National Council for Severe Autism. 

             https://www.ncsautism.org

This group does indeed share “autism horror stories”, but that is the reality they live in. Those sometimes annoying autism self-advocates that get upset by these inconvenient stories about severe autism are demonstrating what is well known, that some Aspies do lack empathy and cannot be reasoned with on subjects they have become fixated upon.  Most Aspies, fortunately, do not have these issues - best the former group find something else to fixate upon, like climate change.

I think autism horror stories should act as a warning of what might lie ahead if you are not proactive earlier on.

I do recall “medical advice” given to me by doctor relatives when Monty was diagnosed aged three.  “It’s alright now that he doesn’t talk, but what are you going to do when he is five years old, if he still does not talk?  People are going to notice” and “make sure he does not get aggressive, as he gets older”.

How do you ensure speech develops and aggressive behaviour does not develop? It is not so easy.

Monty is now 16 and adult-sized, by 9 years old he had experienced all the worse autism can bring, except for epilepsy, but we are still here and still optimistic. Autism did not fade away to nothing, but after nearly 7 years of personalized medicine, IQ has been significantly increased and the severe issues relating to autism have all been resolved.

As one severe-autism Grandad said to me, “Monty is 80% fixed”.

The remaining 20% does still make him more autistic than most people diagnosed today with “autism”.  But overdiagnosis is another story.

I think the members of the US National Council for Severe Autism really should look at personalized medicine. Improvement is possible at any age. Just because you tried a DAN Doctor a decade ago, does not mean you did everything, science has moved on and there are some good researchers.

I am really pleased that even at Monty’s age of 16 that further improvement to the rate of skill acquisition is possible.  It took just three weeks, seven years ago, to find my first 3 effective interventions; further innovations took longer and longer. Six years later another burst of activity seems to have paid off and I think we are approaching “as good as it gets” in terms of mood, behaviour and learning capacity.

The current plan is three more years of high school and then to move on.  That would mean leaving school just before Monty’s 19th birthday, while his classmates would be 16/17 and after they all take their first set of official exams (General Certificate of Secondary Education). The English educational system is unusual in that in the last two years of high school most people study only 3 subjects, it is very narrow and specialized and so unsuited to inclusion of anyone with Classic autism.  In effect Monty skips the last two years of high school, but since he was held back two years at the age of 9, he still leaves school at 18.

Monty does not have an IEP (Individualized Education Program), he attends the regular classes and sits the regular exams, but he does have a 1:1 assistant.  Hopefully, this will continue to work well for another three school years.

Monty has recently joined a social skills group for teenagers with Asperger’s/Autism, which we are calling “Drama class”; it is his first classroom experience with non-neurotypicals. They can practise social interactions and concepts like personal space.  The others have more conversational speech than Monty.

We have found inclusion in a small mainstream school very successful. Putting a group of people with special needs together has advantages and disadvantages. Having a combination of both types of education is probably best.  In the research studies, the interaction with typical peers is the most beneficial, but in many real-life cases of inclusion there are typical peers, but there is almost no interaction with them.

I think that sometimes inclusion is more for the parents’ benefit than the child.  Where we live an autistic child with MR/ID can attend an elite selective high school because according to their IEP they have outstanding grades and so win entry.  How does this help the child? They have no chance of following anything their brainy classmates are learning.

The key aim of Monty’s therapy for some time has been to develop more speech. Many young children now diagnosed with autism have obsessive interests like dinosaurs, about which they may drone on incessantly. We are coming from the “not speaking at all” end of the spectrum.  When people tell me that others with autism speak more than Monty, I now ask what are they actually talking about. Very often it is a repetitive ritual of questions and answers, but it is indeed a form of conversation.

The net result of Monty’s therapy and pills has been more speech in recent months. He is very interested in a widening group of landmark buildings in the city centre and is interested to know in terms of North, South, East and West where certain cities and countries are. I suppose this is the kind of dinosaur conversation/monologue that parents experience with their young Aspie child.

Monty is making some great comments while we are driving, when anything unexpected happens, like today when an ambulance had to squeeze past our car in traffic. Today was a new comment of his creation.

Since Monty is 16 years old, I suppose we are expecting more “speech” like that we had from Monty’s big brother, who could speak like an adult when he was just a small boy. Big brother calls me up from his University in Milan to discuss which Universities to apply to for his semester abroad, or what kind of wine goes best with the risotto a friend is cooking, or how to stop his air conditioner from smelling. Monty wants to know where is Stockholm and does it have a shopping mall? Does the shopping mall have a cinema? Who lives in Myanmar? (Aung San Suu Kyi), Who lives in Kazakhstan? (big brother’s friend) Who lives in Russia (Mr Putin). He wants to know what is for supper and can he go out for ice cream afterwards. 

It is better to just regard more of any kind of “relevant-to-him” speech as a good thing. When he sees a road being reconstructed, he wants to talk about what equipment is used and how the workers will tidy up after they have finished. For Monty being tidy is very important, this why he likes washing cars every weekend.  We have now moved on to washing decking.

If you count all this as “speech”, then there is far more speech than twelve months ago.

At school he can describe where he went for his summer holiday, but at home with family he would be briefer.  This is probably perfectly normal behavior.

In addition to more speech, some sentences are getting very long, meaning sometimes he has to take a second run at getting to the end.

There is also much more use of the first person, rather than you/Monty. He also improved in his second language.

Meanwhile, broader cognitive function is also growing. I restarted an online Math tutoring program called Maths Whizz that we used several years ago. Now we are at a much higher level and Monty needs far less help than I used to give. I have not repeated any of the lessons, whereas I used to repeat all of them several times.

I am not expecting Monty to ever get to the level of a “true Aspie”, Hans Asperger’s little professors who are brilliant at maths and fluently speak multiple languages, like Greta Thunberg.   The “contemporary Aspie” may well be what he ends up resembling in a few more years - I am surprised how over-used that term became, maybe that is why they got rid of it in DSM5.

To be an Aspie the definition slipped to mean you never had MR/ID and did not have a speech delay.

I think Azosemide (the second daily NKCC1 blocker), Clemastine (myelin booster and pacifier of microglia), BHB/C8 and the recently added DMF (immunomodulator and Nrf-2 activator) are driving the changes along with his long term 1:1 assistant.

The summertime raging and regression of previous years is countered by Verapamil, Dymista nasal spray (fluticasone propionate with azelastine hydrochloride), Azosemide and now a tiny amount of DMF.

Our ENT doctor is another big fan of Dymista and told me to feel free to give it twice a day for 2+ months. More Dymista = less anxiety.

Our dental marathon is nearly over. We have been to our new dentist 15 times this year to avoid general anesthetic and two extractions and she has witnessed how allergy greatly affects behavior and compliance. Monty has had local anesthetic 10 times, which is far more than I had expected.

DMF was my final secret weapon to ensure summertime tranquillity at the dentist.

Now at the dentist Monty gets into the chair and then requests what music he wants the dental assistant to put on. Monty and his dentist seem to like Abba and Cyndi Lauper at the moment. When one track ends, he requests the next one, “Miss, can we have ….”.

It does look like very low dose DMF is another piece in the puzzle, at least in our case. It does tick the important boxes in terms of safety and price, plus there is a great deal of scientific evidence showing why it might be helpful.








11 comments:

  1. Maybe this post wasn't "needed" but it is always enjoyable to read what's going on in the life of Monty. :-)
    I've always wondered for the reason of repetition, but I guess there are several answers; for some it is about keeping anxiety down with a well-known theme, for others it is the brain echoing again and again and for a third group it is more about the need of repetition to actually master a skill.
    Here we have ticked off the conversational themes of numbers/counting, letters, exclusion (me iPad, mum dad NO iPad!) and now days of the week. It's always details rather than bigger concepts.

    /Ling

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  2. Good luck for Monty in the new school year!

    In my son personalized medicine brought the need for parent-led personalized education as well. This is challenging, but more effective than what is offered for children with classic autism here. And yes, I also recall some professional advice from the early stages which sound at least odd now e.g. "he will never read, so why bother" (ABA consultant) or "if you are not sure if your son’s symptoms are due to epilepsy, then just wait for a full tonic-clonic and you will know. It is very probable he will have it in the future" (neurologist).

    But actually I wanted to share my very preliminary experience with low dose DMF, which seems to have a significant effect on a mast cell activation driven behavioral flare in my son. It’s just a few days’ observation so I will come back here with further conclusions.
    I really wonder if long term treatment is something to consider with this compound.

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    1. Agnieszka, I think DMF has wide potential application. It is used long term at high doses, I just think that taking occasional breaks may mean that you do not need to raise the dosage from the extremely low levels we are discussing. We are still only talking about 1% of the long term psoriasis dose.

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  3. "80% fixed" is about the best you can hope for.The question is,how independent do you think Monty will be?I know severe autism is not the same as regressive autism,which in my case has been shown to be due to genetic autoimmune disease.I had serious learning delays,and difficulties,and even though I write very well,I still have serious difficulties talking,and articulating my thoughts verbally.Treatment has its limits,as I learned from my own experience.It will not turn someone with severe,or even moderate autism,into a Greta Thunberg,but if it has reversed the autism to the point where you can live on your own,the treatment can be considered a success.

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    1. Roger, only time will tell how independent he will become. The more complete the medical intervention and the better the therapy/education/nurture the better the outcome will be. So whatever the outcome, it will be a lot better than looked likely at diagnosis.

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  4. Peter, thank you again for creating this blog. The depth of information is amazing and I'm trying to use it for treating my 4 year old boy. I read in another one of your posts that risperidone is a drug of last resort. Have you ever considered using it? Do you think it could result in more cognitive impairment? I'm asking because it was recommended by our doctor.

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    1. Michalis, Risperidone is an approved drug to treat some features of autism and so it not surprising that your doctor recommends it. It does reduce aggression and irritability, but does not address the underlying causes of these symptoms. It does often lead to obesity and sometimes a condition covered in this blog called tardive dyskinesia, which may not go away on cessation of the drug. Ask your doctor how he would treat it.

      I personally think giving this to a 4 year old is extremely unwise. If it was an aggressive 24 year old living in a care home, who responds no other therapy, then why not.

      There are plenty of science-based therapies for autism that have only very minor side effects, if any.

      In a 4 year old I would prioritize resolving any excitatory/inhibitory imbalance while the brain is still plastic. I would not add further potential "imbalances". This is all beyond the realms of current medicine.

      I have never considered using Risperidone, even when we did have extreme behaviors 7 years ago.

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    2. Peter, could you be more specific regarding "resolving any excitatory/inhibitory imbalance"? What, do you think should be on our list at this age?

      We are talking about a child with classic early onset autism, very limited speech, no trouble with sleeping at night, small signs of sibs, but restless (inattention and hyperactivity) most of the day.

      We've tried many supplements (no drugs yet), but the only thing that works is magnesium, which helps him calm down at night, long enough to go to sleep.

      Thank you again.

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    3. Michalis, I would start by making a two month trial of bumetanide.

      The Safe Use of Bumetanide in Children with Autism
      https://epiphanyasd.blogspot.com/2019/06/the-safe-use-of-bumetanide-in-children.html

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  5. Here is a paper published in 2016 in Pediatrics, which is a very mainstream and renowned medical journal:

    "Irritability and Problem Behavior in Autism Spectrum Disorder: A Practice Pathway for Pediatric Primary Care"
    https://pediatrics.aappublications.org/content/137/Supplement_2/S136

    While it does not refer to bumetanide, the authors point to side effects of antipsychotics and recommend lower-risk strategies in most cases:

    "risperidone and aripiprazole had the strongest evidence in reducing Aberrant Behavior Checklist Irritability Subscale (ABC-I) scores, but with adverse effects including somnolence or sedation, weight gain, and extrapyramidal symptoms such as tremor, dyskinesia, akathisia, and rigidity. Additional adverse effects of the neuroleptics mentioned earlier include urinary retention, constipation, insulin resistance, dyslipidemia, hyperprolactinemia, hematologic abnormalities, QTc prolongation, seizures, and neuroleptic malignant syndrome."

    "Given the risks and benefits, atypical neuroleptics such as risperidone and aripiprazole therefore should be used to treat severe I/PB in ASD only in the following situations: safety is an issue; the behaviors interfere with current functioning to the degree that a change in school or residential placement will be necessary without treatment; other indicated interventions have resulted in no or incomplete improvement of behavior that continues to interfere with daily function; I/PB is judged to be unrelated to psychosocial stressors, communication difficulties, underlying medical or psychiatric conditions, or environmental factors; or lower-risk interventions cannot be implemented."

    "N-acetylcysteine and clonidine showed significant efficacy in reducing ABC-I scores and did not cause significant side effects in the areas assessed. Although replication of these studies is needed to confirm the findings, N-acetylcysteine and clonidine might be considered for treatment of I/PB in ASD when atypical antipsychotics are deemed inappropriate."

    Obviously, NAC or clonidine are not the only solutions available, but I think it's good to have this paper at hand while discussing risperidone or Abilify "for autism". The problem is that most psychiatrists do not know it.

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