Till startsida
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SEPTEMBER 2016

QUESTION 1

QUESTION:
I am the mother and trustee of a girl with high-functioning autism and long term eating disorder/anorexia and I am contacting you for advice. I wonder whether I should write the entire story+questions here right away or if I get in touch with you first? (which would put me at ease.)
Just a short intro: My daughter, who is 21 years old, has had eating-related difficulties her whole life and it “culminated” in anorexia in 2011, the anorexia has continued since then, with short intermissions. She keeps falling between the cracks at different psychiatric clinics, and only a few of them can even properly engage her with respect to her autism! And to some degree habilitation services as well (who “would prefer not to”, though)… An evaluation was made in 2012 by professor Maria Råstam who claimed that one must reach my daughter using autism pedagogy (we have attempted to contact her again but she says that she only works with younger patients). My daughter has high intelligence but “severe autism” in many areas and a great deal of obsessive compulsions. Her symptomatology is complex, right now she weighs very little and is not responding to her treatment, and she could be facing involuntary hospitalisation. I am banging my head against the wall trying to get healthcare services to realise that my daughter does not fit into their standard templates and that she has the right to get the best care possible with respect to her needs.

I hope to get in touch with you soon.

ANSWER:
Hi!
Thank you for your letter!
The situation you describe is typical of how psychiatric services often are; eating disorder clinics are very skilled at treating eating disorders, and habilitation services are very good at working with autism, but being able to handle both anorexia nervosa and autism is something that most people in eating disorder care services and habilitation services respectively find to be too complex. You mention that you have been in contact with professor Maria Råstam, who probably has the most knowledge of anyone in the world on the overlap between autism and anorexia nervosa. Unfortunately, no specific treatments have as of yet been worked out for the set of problems that you are describing. Generally speaking, anorexia nervosa with concurrent autism should be treated in eating disorder care services, which in turn must collaborate with pedagogues and potentially also dieticians and speech therapists at habilitation services. The structured meal schedule that is always recommended in cases of anorexia nervosa suits people with autism very well. Studies investigating compliance in patients with both anorexia nervosa and autism show that this group with “double diagnoses” shows surprisingly good compliance, i.e. they rarely “drop out of” treatment. Around 10 years ago, Kate Tchanturia, psychologist and researcher in London, introduced an anorexia treatment called Cognitive Remediation Therapy. The treatment focuses on the fact that people with anorexia nervosa like to get hung up on details and are unable to see themselves or different phenomena as part of a larger context (so-called “weak central coherence”) and that they find it difficult to be flexible. The treatment attempts to train and improve these skills. Weak central coherence and impaired flexibility are also hallmarks of people with autism. Tchanturia’s treatment studies have shown that Cognitive Remediation Therapy can be a meaningful complement to tradtional anorexia treatment. I unfortunately do not know whether any eating disorder unit in Sweden uses this treatment method yet.

BY ELISABET WENTZ


QUESTION 2

QUESTION:
One of my grandchildren was diagnosed with ADHD when he was five years old. Upon turning 10 it turned out that we in our family have gene mutation MTHFR. He has the most severe kind of homozygous 677TT.
I am now of course inclined to wonder; is the gene mutation the cause behind ADHD or how great is its impact?

ANSWER:
No single gene with major significance for the occurrence of ADHD has been identified yet. Research is currently ongoing, but genetic factors are involved to some degree in the majority of ADHD cases.
The gene mutation you describe has turned out to be rather common in society at large (well over 10% of the population has it). It may be involved in the metabolism of folic acid and homocysteine. 10 years ago there was quite a bit of debate regarding the significance of increased homocysteine levels (for the heart, central nervous system, psychiatric aspects etc.) and their impact on the potential development of disorder or illness. No clear link has been found.
Given the current state of research and knowledge, there is nothing indicating that the gene mutation MTHFR 677TT is specifically involved in the development of ADHD.

BY GILL NILSSON


QUESTION 3

QUESTION:
Is it possible for an autism spectrum diagnosis (at age 7) to change drastically overnight (at age 12)?

I.e. that the child develops obsessive-compulsive syndromes (obsessive-compulsive thoughts/rituals), tics, wets themselves, has difficulty eating/drinking, difficulty remembering things, difficulty functioning in everyday life as before, stops/develops difficulty talking, separation anxiety, has difficulty doing things that they have been able to do before, personality change, hallucinates (sound/light/images), becomes passive/still (due to obsessive-compulsive behaviour) etc. In other words, like a completely different child than before.

ANSWER:
Such a drastic deterioration of the child’s condition along with the appearance of new symptoms mean that a renewed child neurological/child psychiatric evaluation is needed in order to assess causes and treatment.

BY ELISABETH FERNELL


QUESTION 4

QUESTION:
I am an “old” woman of 55 years who was examined for Asperger’s syndrome about 10 years ago. At that time and place, there was no knowledge about specifically women with Asperger’s syndrome and instead one simply followed the “template” based on boys and men. As I have read quite a lot of literature etc. on the subject I am rather convinced that I have this diagnosis but due to, as I see it, ignorance, I have not been given the right diagnosis. What advice would you give me? Where should I turn? How do I move forward? Throughout my whole life I have periodically felt very bad and am finally getting to truly understand “myself” and would very much like to get an “accurate” assessment from someone with good knowledge of specifically women with ASD! I live in Blekinge.

ANSWER:
From your description we also think that a re-evaluation would be valuable. Just as you say, we now know more about the symptomatology of women with Asperger’s syndrome. It should be possible for you to get such a follow-up evaluation in Blekinge, at one of the adult psychiatric clinics. Perhaps at the same clinic where you were previously examined? The doctor and psychologist usually collaborate when performing the examination. A renewed examination would make it possible to determine what kind of help you require.

BY LENA NYLANDER


QUESTION 5

QUESTION:
Question about autism
7-year-old boy with moderate mental retardation, moderate autism and hearing impairment (deaf) uses two CI implants, destructive behaviour. The question is: When a child has several diagnoses, which type of communication should one use? The boy is interested in watching pictures, but he rarely communicates with them. Do you have any suggestion on how we can improve our communication?
Thankfully awaiting your reply!

ANSWER:
The combination of symptoms that you describe is important to examine and there are specific conditions where the child’s autism is combined with deafness. Your son’s options for communication and which communication aids might help him most should be examined by both hearing care and habilitation services, working in collaboration. Please let us know which area you live in so we can contact colleagues situated in your county.

BY ELISABETH FERNELL


QUESTION 6

QUESTION:
I have a son, 13 years old. He was diagnosed with autistic syndrome during the first grade in elementary school. He is of normal intelligence. For about a year now he has been attending a school especially tailored for children with Asperger’s syndrome. After a great deal of effort and struggles, we managed to secure a spot at this school. My son very quickly gets tired. After a typical schoolday ends, he is completely exhausted. He comes home, does not want to talk or have a snack. He goes straight to his room and lays in bed until it is time to have dinner. Potential activities after school are completely unthinkable. He himself expresses some unhappiness about this. He is sad about the fact that his siblings can find energy for things they like to do and that he cannot, that he does not have the energy for anything other than laying in bed. He himself expresses that he wants to do “fun” things. Whenever we do something with our son on the weekends, e.g. go to the cinema or a museum, he often gets so exhausted that he barely manages to go to school after the weekend. Inviting family friends on a Saturday is also very energy-consuming. I do not know exactly what is that is sapping energy from my son. Lots of people, noise and buzzing is one guess. My question is whether we can help my son somehow. Could this be a depresssion? Could he get “better” from any kind of medication? Shorter days?

ANSWER:
Your 13-year-old son may very well be suffering from depression, in which case medication might be able to help. Of course, it is also possible that there is something about his situation at school that causes stress for him (and is contributing to his fatigue/depression). The important thing now is to contact the doctor with primary responsibility for your son’s health (because I assume he has one), so that they can give a correct diagnosis and so that your son can receive effective help as soon as possible. Please notify us on how it goes, or contact us again if you think we might be able to help in any other way.

BY CHRISTOPHER GILLBERG


QUESTION 7

QUESTION:
From what I understand, a phase 3 study of a bumetanide preparation of Neurochlore is commencing in France now. The study is expected to go on for a year. My question is: assuming that all goes well, when might one expect a bumetanide preparation to be available for treatment of autism in Sweden.

ANSWER:
Since 2014, the GNC has been preparing for a clinical study in which treatment with Bumetanide, a diuretic preparation reducing the chloride content in cells, would be offered to different groups of children and adolescents with autism – with the causes of their autism condition either known or unknown. The study has been approved by the Ethics Committee. For our planned study we have contacted pharmaceutical companies in order to get access to the preparation in liquid form. Our own study has not been able to start as we have not yet received any financing for it. What we would like to do is try the preparation for different groups of children and adolescents with autism in order to see whether the effect differs between different forms of autism. The preparation is available in Sweden, in tablet form under the name Burinex. If the currently ongoing study in France shows good results of treatment, the preparation should likely be approved for testing on children and adolescents in Sweden as well.

BY ELISABETH FERNELL



We will reply to more of your questions next month!

Regards from the GNC researchers.

 

 

 

 

 

Page Manager: Anna Spyrou|Last update: 8/30/2016
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