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JULY 2016

QUESTION 1

Hi! Our son Sam, 30 years old, is autistic with mental retardation and epilepsy. He is interested in music and loves his Alfons Åberg books, is very social and bilingual. He has personal assistants and he lives at home. During the day he is at the daily occupation unit. Lately he has become more and more obsessed with his things and refuses to give them up, even when sleeping. He feels more and more insecure and dependent on them. There are times when he’s more “normal”! And ordinary. I think that with the right help and professional guidance and examination, he can develop more and more.

QUESTION:
The question is whether you have study groups and projects that he can be included in and become a target person in?

ANSWER:
Right now the GNC does not have the kind of treatment study that I think you are thinking of but perhaps your son might be able to get help through the habilitation unit you belong to. The problem is, as I understand it, that he becomes so fixated on his own different things, he brings them along even when he’s sleeping. If the behavior affects his everyday function negatively, perhaps a psychologist working with young adults with autism and mental retardation could map out a programme where one can help Sam reduce these fixations.

ELISABETH FERNELL


QUESTION 2

QUESTION:
I know there aren’t that many studies performed on Burinex and Asperger/ASD’s, the largest seems to have been focused on children (http://www.ncbi.nlm.nih.gov/m/pubmed/23233021/). It’s possible that it could have a positive effect since children’s brains are still in the process of developing, but how is it for adults with Asperger/ASD’s if they were to be treated with Burinex? Would it have a positive effect?

ANSWER:
Burinex/bumetanide has in a well executed French study (by Eric Lemonnier and associates) had positive effects on children compared to placebo. Somewhat older children have also had positive results. In another study of teenagers and young adults with autism, Nouchine Hadjikhani has demonstrated an improvement of the brain functions that are recruited when interpreting emotional expressions in the human face after treatment with bumetanide. Altogether the studies performed thus far indicate that bumetanide could have positive effects in adults with autism as well. However, it must be added that more and much larger studies must be performed before one might potentially be able to draw conclusions regarding treatment effects of bumetanide in both children and adults with autism.

CHRISTOPHER GILLBERG


QUESTION 3

QUESTION:
Is there any link between diagnosed PANDAS and confirmed gene mutation homozygous 677TT?

ANSWER:
I have searched the medical database PubMed and I cannot see that anything has been published on any link between PANDAS or neuropsychiatric symptoms and mutation of the gene: methylenetetrahydrofolate reductase (MTHFR 677TT).

ELISABETH FERNELL


QUESTION 4

QUESTION:
When a child with NPD’S is repeatedly under stress in school and very little is done about it.... What can be the long term effect?

ANSWER:
One consequence of not getting any understanding for one’s difficulties and being subjected to an all too high level of demands and stress at school is that the individual’s self-confidence is impacted negatively, it can also lead to depression and that one ends up not having the energy or will to be in school at all.

ELISABETH FERNELL


QUESTION 5

I have a boy who is ten and a half years old who has Asperger syndrome, ADHD, Tourette syndrome (asthma, eczema, allergy, overweight)

For a few years now he has tried Concerta, Ritalin, Elvanse, Strattera and Abilify. He experienced some positive effects, like how he felt calm inside and was able to concentrate. Unfortunately the side effects outnumbered the positive effects, so he has now been medication-free for one year. His situation at school has turned from him not being able to be at school to him longing to be there. He has his own room, with his own resource as well as a teacher with pedagogic responsibility for him and one other student. The room also contains a synthesiser that he uses to relax. However, he is worried about his own future and whether he will be able to get a driver’s licence and drive a car, since he cannot concentrate and be still for long periods of time, what kind of job might he be able to get, etc. He wants to be active and participate in class activities, but does not have the energy for it and ends up disappointed in himself and feeling lonely. Still, he wants to be at school and is managing to tackle several subjects quite well, does after all see his classmates a bit, mostly during breaks when some people come into his room. At home he has no one to interact with as the ones he has normally met with are pulling away from him. A lonely guy with low self-esteem who wishes for social interaction. Likes to ride and when he is on the horse he has no motor tics at all. Good at playing the piano by ear. According to his piano teacher he almost has perfect pitch. This is where my second question comes in. I have read a dissertation online saying that those with perfect pitch have a different learning style than those without. QUESTION: Is there any research regarding learning style in cases of autism and perfect pitch, respectively? Are the learning styles for people with autism similar to the learning styles for those with perfect pitch?

QUESTION: Is there any ongoing research on medication that soothes the body internally but does not give so many side effects? Our son always seeks to feel a sense of calm. He sleeps on an air mattress because it “pushes” back when he moves so he does not have to move himself so much, which he claims makes him sleep better. Weighted blankets work when it is really cold outside since they make him so warm. His hands quickly get sweaty, making him unable to write, build with legos etc. and has to wash his hands very often because he gets so sticky from sweat. QUESTION: Is it a common phenomenon for people with his diagnoses to get sweaty palms? During winter, his hands get sores from all the washing. When we stop him he is hit with panic and anxiety, so we rub lotion on his hands instead and have bought special gloves at Medeca. I have read a bit about research from Kristianstad University about criminality, drugs and ADHD. I am thinking we will need to find him something that will allow him to make himself feel calm from within, so that he does not try to feel calm through drugs when he grows older. QUESTION: Any tips given that the medications mentioned above have not worked?

ANSWER:
There is a new ADHD medication called Intuniv, which we have used in research. It does not have the same side effects as stimulants, and might be worth trying. It has an effect on both ADHD and tics. Did Abilify have positive effects, but major drawbacks? There are other varieties partially similar to Abilify, but then again, those are not directly focused on ADHD. Well executed medication treatment for ADHD has a good chance of reducing the risk of drug use; this has been observed in large studies.
I do not know of any research regarding perfect pitch and autism, but it is well-known that people with autism can possess great musical talent, including perfect pitch.
High activity in the ”autonomous nervous system” is quite common, and can cause for example sweating, increased body heat, and palpitations. Intuniv might possibly be able to alleviate this, and there is also other potential “de-stressing” medication, e.g. Inderal.

MATS JOHNSON


QUESTION 5

QUESTION:
I’ve been told that there is some "evidence" on the connection between, among others, ADHD and the amount of dopamine produced in the "basal ganglia" and transported (carrier: adrenaline) to parts of the brain. What are the facts / evidence in this matter?

ANSWER:
ADHD symptoms are often related to hypofunction of the dopaminergic pathways in the brain. Many of the medications used to treat such symptoms affect dopamine-signalling.

CHRISTOPHER GILLBERG


QUESTION 6

QUESTION:
Why is the development of knowledge so slow with regard to treatment of infection-triggered or immunological psychiatric problems?

ANSWER:
This is very likely due to the fact that the brain is a very complicated organ, perhaps the most complicated ”machinery” there is and that the immune system is probably at least equally complicated. Hence, when both of these systems are involved, it creates a very complex set of functional problems. When I search the medical database PubMed for the combination “immunology and neuropsychiatric symptoms”, 725 studies appear as matches.

ELISABETH FERNELL


QUESTION 7

QUESTION:
I was wondering if you could name some studies that focus on the biological function in NPD’s, like neurochemistry, with scientific proof that one might refer skeptics to, i.e. people who “don’t believe in ADHD and ASD’s/Asperger syndrome because there’s no evidence or because it’s all mumbo jumbo anyway”. I am ridiculously tired of having to convince different individuals that my functional variation actually exists and that it isn’t a question of “just shaping up and trying harder” or something that is made up, as they claim.
Preferably so that one is able to tell these people in simple concrete terms the difference between an NPD brain compared to a neurotypical brain.

ANSWER:
Autism and ADHD are neurodevelopment disorders caused by genetic abnormalities/variations, environmental risk factors (including those associated with extreme prematurity, other severe perinatal problems, infections in pregnancy, and toxins) or combinations of these. They are never directly caused by psychosocial problems. They are very "real" in the sense that they lead to a variety of functional impairments that make everyday life quite difficult in many instances and circumstances. Both autism and ADHD are often associated with strengths such as creativity, perfectionism, "new ideas" and either tenacity or impulsiveness. There are measurable chemical and physiological changes in the brain in both conditions, some of which overlap across the two. Decreasing the stigma by acknowledging the reality of the problems and supporting the strengths can lead to markedly improved outcomes. For some symptoms there are excellent therapies, including focused training, cognitive behavior therapy and medications. These therapies contribute to decreasing the risk of later road traffic accidents, drug abuse and criminality (and probably later psychiatric disorder). Altogether more than 50,000 high-quality scientific publications have been published, and more than 500 of these have been authored by members of the GNC.

CHRISTOPHER GILLBERG


QUESTION 8

(i) QUESTION:
Question one is – are there people who are not receptive to ADHD medication as a result of it causing side effects? Background: I have a son who is 25 years old. He is adopted from Colombia, at five weeks of age. From an early age he was interested in everything that was “forbidden”, coffee at first. In many ways, I’ve followed him quite closely, to name one I was a special education teacher at the school he attended. I discovered his concentration problems early. In the beginning, he received excellent assessments and physician contact. However, over the years he has met with very many doctors and ever since the age of about 17 or 18 he has felt that the medication is making him depressed. It is virtually impossible to maintain a stable physician contact through public services.
Unfortunately this has led him to begin smoking cannabis (also at an early age), and he feels that this works much better for him. He has deftly managed to keep us parents in the dark about this, and I haven’t understood the scope of it until now.
Much to my dismay he also claims that there are doctors who argue that cannabis can be a treatment alternative for people with ADHD. He must have misunderstood something and is now using this as a way to legitimise his abuse.
What I absolutely demand of him is to completely refrain from all forms of drugs, actually alcohol as well, because he runs such a heightened risk of abuse. But I am uncertain of how well he knows himself.

(ii) QUESTION:
Question two is: Should I give up on the idea of medication for him entirely? Sure, he’s an adult so it’s none of my business, but after all, he does listen to me. He has a rather solid foundation to fall back on, a job, a high school diploma and an apartment, but I am very worried that his brain has taken a lot of damage from his abuse of drugs. Given all this, can I advise him to simply abstain from everything? (He often works nights and has trouble sleeping, but then again, that can happen to anyone every now and then).

ANSWER:
Answer to both questions: There are people for whom ADHD medications aren’t very effective and who also experience rather heavy side effects, such as the ones you mention. However, there are also many different variations of medications, with different characteristics, so it might definitely be worth trying the various different kinds before abandoning medication altogether. Cannabis is not anything we recommend, it causes cognitive impairment with increased learning difficulties, as well as the risk of cannabis induced psychosis.
Disruption of one’s circadian rhythm, including difficulties getting to sleep at a “normal hour” is a very frequently occurring phenomenon in cases of ADHD. In this case, your son works nights, but otherwise Melatonin (a neurohormone occurring naturally in the body, but also available as medication) can aid in falling asleep, if taken at night.

MATS JOHNSON



We will reply to more of your questions next month!

Regards from the GNC researchers.

 

 

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