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JUNE 2016

QUESTION 1

QUESTION:
I am mother to a nine-year-old boy who was recently diagnosed with autism. His IQ is in the normal range, although slightly low. I know that you have done quite a bit of research into whether there is any medical cause for autism, for example lack of a special protein in one’s brain. My son has a very one-sided diet. I give him vitamin D and omega 3 daily. I have read some about how vitamin B6 and magnesium also being good, but that is not something that I have given him. My question to you is whether you have any recommendation concerning dietary supplements?

ANSWER:
There is no general rule applicable to the diet for all children with autism. However, the following can be said:
1) all people with autism should control the concentration of vitamin D and when needed supplement with synthetic vitamin D and by spending more time outside in the sun (without SPF if you are not oversensitive to sunlight)
2) omega-3 fatty acids have positive effects, at least for a subgroup, and intake of these may be increased both through food and with the help of dietary supplements
3) the “insistence on sameness” that is so common in autism often leads to limitations in the intake of different foods; this is something that one should try to address early in life (but later as well if one has not succeeded during the child’s preschool years) through gradual change and introduction of new foods/dishes according to an established schedule/routine
4) gluten in the diet is likely only negative for those children with autism who have demonstrable gluten intolerance
5) strong colouring agents in the child’s diet are negative for the child’s general behaviour, so there is every reason to avoid them
6) it is unclear whether high sugar consumption could possibly influence autism symptoms
7) there is indirect support for the idea that all too low cholesterol level in the body might exacerbate symptoms and function in autism

CHRISTOPHER GILLBERG


QUESTION 2

(i) QUESTION:
Why is it so hard to get treatment for PANS/PANDAS in Sweden?

ANSWER:
Getting treatment is not only hard in Sweden – the disorder is “vague” and difficult to pinpoint, and the symptoms are either psychiatric, neurological or both. Contact a child clinic or child neurologist/neuropsychiatrist (preferably immediately upon symptoms manifesting) who can examine suspected PANDAS symptoms (suspected neuroinflammation) and other important medical/neurological conditions. It is important to investigate different causes and diagnoses before selecting treatment.
One especially difficult aspect is that there is no specific test that can be administered in order to corroborate a PANS/PANDAS diagnosis, many diagnoses with similar symptomatologies must be taken into consideration.

(ii) QUESTION:
If a child has PANDAS symptoms, what would you recommend doing?

ANSWER:
I would recommend you to see a paediatrician or paediatric neurologist for assessment and careful differential diagnosis.

(iii) QUESTION:
What treatment is best for a child with PANDAS?

ANSWER:
Careful assessment and differential diagnosis is the most important, and treatment differs for different conditions/causes.

(iv) QUESTION:
What would you recommend a parent to do, if they think their child has PANS/PANDAS?

ANSWER:
I would recommend you to see a paediatrician or paediatric neurologist/neuropsychiatrist for assessment and careful differential diagnosis.

(v) QUESTION:
Where is the best place in Sweden, to get help, to get tested for PANDAS?

ANSWER:

I couldn't tell you any "best" place. There is ongoing research in Stockholm and Gothenburg.

MATS JOHNSON


QUESTION 3

QUESTION:
I have a question regarding schizoid personality disorder... Does this personality disorder really exist? Isn’t it just a form of autism? I have met so many people with autism that would easily meet the criteria for a SPD diagnosis as well. I know that SPD still exists in DSM-5 but it would be interesting to hear what you guys think about the issue?

ANSWER:
Schizoid personality disorder and Asperger syndrome are diagnostic labels that refer to overlapping (or, sometimes, even identical) clinical phenomena. It is often more of a difference in tradition on the part of the psychiatrists seeing an individual patient; some (mostly adult psychiatrists) would say ”This is clearly a case of SPD”, when others (mainly child psychiatrists) would insist that ”This is typical case of Asperger syndrome”.

CHRISTOPHER GILLBERG


QUESTION 4

QUESTION:
What do we know about the biology of ADHD and autism? I'm thinking mainly about adults. Has anything been proven, or are we guessing what's going on in our brains?

ANSWER:
A lot is known about the basic biology in ADHD and ASD, actually even more about the latter than the former, in spite of ADHD being so much more common. Both are highly genetic but can also be caused by negative effects on the brain during the foetal period and in the first few years of life. Sometimes a combination of genes and biological environmental effects play a major role. In ASD there are often problems in the early stages of brain development, typically involving “synaptogenesis” and “synaptic pruning” (synapses are the contact points between nerve cells). In ADHD, the brain’s attentional systems and reward areas are affected, as are areas related to executive function (that serve things like organisational skills and planning).
In my recent book ADHD and Its Many Associated Problems I have written much more about this.  Reference: Gillberg C. (2014). ADHD and Its Many Associated Problems. Oxford University Press.

CHRISTOPHER GILLBERG


QUESTION 5

I saw via the Attention Gothenburg site on Facebook that you’re looking for questions. I have a question regarding one of my students, who has managed to get through the first nine years of school without having to write “freely” as they are considered to be incapable of doing so in spite of having good writing ability. But for the tenth through twelfth years of school, being able to express oneself independently in writing is greatly emphasised, a requirement even. So both I and the student are really in need of support. I will therefore try asking my question here, even though I don’t know whether it’s the right forum for it.

QUESTION:
How can I support a tenth grade student who lacks the ability to express themselves verbally and in writing? The ability to write is there but it is as though they lack the ability to cognitively produce images. They seem to lack the ability to mentalise. Can’t express anything verbally. For example when asked ”tell me about your friends”, they answer ”I can’t, I don’t know”. They are not resisting the task itself but claim that “there’s nothing in their head” to tell.

Information:
By posing questions, making mind-maps etc., I am able to make the student talk about the book they’ve read, the suggested task or whatever it is they are supposed to work on. But the result is very meagre and completely contingent on my questions. Without questions I get nothing. The student delivers nothing verbally. The student becomes very pressured, either on the verge of tears or angry, which makes it feel difficult to carry on. Again, the problem is not expressing oneself in writing or verbally, the problem is that the student claims to “not have it in their head”.
I am used to e.g. working with students with different kinds of opposition to/difficulties in writing, for example dyslexia, ASD’s. In those cases I usually act as a secretary or record sound files or find some other way to help the student process their material into writing. But in this case I don’t even get any material. Not even at the simplest level.
Other courses of the programme have so far been completed at an E level, with mathematics as the strong suit with higher grades.
The problem has been prevalent all throughout the student’s first nine school years, but has until now been “solved” by allowing the student to avoid writing freely. It is more difficult to work around in the tenth through twelfth years of school.

ANSWER:
You address an important problem area that really is a major pedagogic challenge, and unfortunately one that is not so uncommon. First and foremost it is important to stress the fact that writing likely constitutes the complex communicative skill we human beings engage in. Everyone struggles when they are to produce text, for example me right now. I think this is an important piece of information to communicate to students, and especially to those whose confidence in their own abilities might be faltering. Otherwise there is the risk that one starts to define oneself as “someone who cannot write” in a very static sense, which isn’t a good starting point if one is to develop as a writer. I also want to emphasise that research on writing and writing difficulties is relatively speaking very scarce, when compared to other difficulty areas such as attention difficulties, reading difficulties/dyslexia or difficulties in mathematics/dyscalculia. (Writing difficulties were recently called “the forgotten learning disability” in an article in the periodical Pediatrics.) Given how important writing is to success in school – both to organise one’s own knowledge in different subjects and to be able to show what one knows to teachers – it is unfortunate that we in terms of research don’t know more about how we can support those who have very major difficulties.
I note that you through questions, mind-maps, guiding pedagogic talks and so on, are trying to structure the writing task for the student in question. This is absolutely the right idea according to my own practical experience and my reading of the available research. For those who struggle with generating ideas as much as your student, there is a much greater chance for ideas and creativity to flourish if there is a clear structure outlined. As a teacher or pedagogue it is otherwise easy to – with the best of intentions – end up offering the student to “write exactly whatever you want!”. Unfortunately this “freedom” often to leads to even more meagre results Carefully defining and breaking down the assignment in small clear steps, which individually might be manageable to the student, is instead the right way to go. However, from your description it sounds like the student may not feel entirely comfortable when you work together in the one-to-one situation, and that they instead perceive it as filled with demands? I also wonder when I read your letter whether this reaction in that case is specific to writing tasks in particular or whether the student is sensitive to demands in other contexts as well. Perhaps you have tried using a template for how texts and the writing process can be mapped out, which offers structure, but at the same time is not contingent on you constantly being there and helping them personally? I have on several occasions noticed that some students relax and work more creatively when I am not around and they don’t have to “deal with me” as a person, but that they still need the structure that I can offer them as a professional pedagogue. There is an American model for writing training – “Self Regulated Strategy Development” (SRSD) – that has, by far, the strongest scientific support in terms of helping students with special needs (but, as mentioned above, still quite little research). SRSD has the student learn different memory tricks to help them in the writing process – e.g. POW, referring to “Pick my idea”, “Organise my notes” and “Write and say more”. As far as I know no description of the method is available in Swedish, but here are links to texts with some more information and many references in case you think this might be interesting to you and your student.

http://s3.amazonaws.com/cmi-teaching-ld/alerts/3/uploaded_files/original_alert17writingSSRD.pdf?1301000388


http://www.amazon.com/Writing-Better-Effective-Strategies-Difficulties/dp/1557667047#reader_1557667047


There is one more thing that sticks out as I read your letter, and that is the mental block and accompanying anxiety in the student you describe. I think that is something that all of us can actually identify with, albeit to a much milder degree: a blank page can really scream at you whenever your writing stalls and you can’t seem to get going. When the problems are as major as they are for your student, one might also, in addition to writing training, need to work on breaking down this anxiety-based mental block. For treatment of phobias and similar phenomena, psychologists tend to use a process called exposure therapy. The point of exposure therapy is that the person is exposed to what they perceive as scary but in a safe, manageable format free of demands, where the exposure increases in small increments. Perhaps you might be able to work together with the school psychologist at your school and consider whether that kind of work might be necessary with regard to your student’s writing. I have worked with students with similar problems to the one you describe who initially have only held the pen and made some dots and scribbles, then moved on to practising writing their name, and then writing certain words. Once the mental block and anxiety decreases, one can hopefully reintroduce more traditional writing tasks.
Finally, I also think that it might be a good idea to, in collaboration with the student, their family, and other student health team staff, consider doing an in-depth examination of the student’s learning patterns and ability, if this has not already been done. This might present other possible explanations for the student’s problems. For examples, the problems might fundamentally be a result of difficulties in the cognitive area known as executive functions, which has to do with skills like planning, organising, prioritising and the ability to “create freely”.

JAKOB ÅSBERG JOHNELS


QUESTION 6

I try to keep up with current research, both as a parent of a child with autism and as a speech therapy student. It’s not always easy sorting among different sources and different research orientations. Over the last few years I think that a lot seems to be centered around immunology. Some even seem to argue that autism should be considered as (symptoms of) an autoimmune disease. Others use expressions like inflammation of the nervous system. Some of the things I’m wondering are:

(i) QUESTION:
Do you think, going by current research, that a link can be determined between immune system and autism? And if there is such a connection, is it possible to say anything about what proportion of cases this might apply to?

ANSWER:
There are a number of studies regarding both autism and intellectual impairment, which have demonstrated the existence of specific immunological and inflammatory markers. However, their significance relative to the disorder is as of yet unclear. Like intellectual impairment, there are many causes behind autism. Around 500 genes have been successfully identified as significant in the development of autism. There is also an interaction between underlying genetic mechanisms and other influencing factors. For example, immunological abnormalities may interact with genetic factors, but what role this plays in the development of autism is as of yet unclear. There is research being conducted in this field, see for example the article: "From molecules to neural morphology: understanding neuroinflammation in autism spectrum condition" by Young AM, Chakrabarti B, Roberts D, Lai MC, Suckling J, Baron-Cohen S in the periodical Molecular Autism 2016;7:9.
Another study, from 2015, provided evidence that the cytokine profile (cytokines=signal molecules, produced by cells in the immune system) analysed during the neonatal period, could be related to different degrees of severity of the child’s autism. The authors are discussing that the findings in time might produce new treatment opportunities. Article: “Neonatal Cytokine Profiles Associated with Autism Spectrum Disorder”. Krakowiak P, Goines PE, Tancredi DJ, Ashwood P, Hansen RL, Hertz-Picciotto I, Van de Water J. Biol Psychiatry. 2015 Aug 14. pii: S0006-3223(15)00655-1.

(ii) QUESTION:
A related diagnosis caused by infection and where the symptoms are similar to NPD’s is PANDAS/PANS. At present it is very difficult for parents to get lab tests done in order to get potential suspicions of PANDAS/PANS confirmed or disproven. There seem to be conflicting views regarding how to interpret the tests that are available. Do you think that certain children with NPD symptoms should be subjected to more comprehensive testing than what they normally go through today? Which tests do you think are relevant?

ANSWER:
When examining suspected neuropsychiatric/neurodevelopmental symptoms/difficulties it is always important to consider onset and development of symptoms. Is it a sudden change that has occurred in the child’s symptomatology? The term PANDAS refers to an acute onset of neuropsychiatric symptoms occurring after a streptococcus infection, when the term PANS is used, it may also be a matter of other triggering mechanisms, not only an infection. One problem is that no test today can confirm the cause of symptom development in cases of PANDAS or PANS. One must let the clinical symptomatology determine the treatment. As part of a research project at GNC, specific tests concerning immunological markers are being performed on children and adolescents with symptoms corresponding to the term PANS.

(iii) QUESTION:
Many people with PANDAS have been helped greatly by antibiotics. Do you think that this and perhaps other diagnoses related to autoimmunity can/should be treated this way?

ANSWER:
In many cases of PANDAS/PANS an infection/several infections has/have been present before the acute onset of neuropsychiatric symptoms. If no other underlying cause is determined it is reasonable to try treatment with antibiotics. If an autoimmune cause is suspected, treatment with immunoglobulin can be a next step, in collaboration with a child immunologist. Depending on the type of symptoms, other, symptom alleviating treatment may be tried.

(iv) QUESTION:
A few years ago, there were a number of articles written on medication that had been tested on people with autism connected to Fragile X, where both the autism symptoms and the intellectual disability had been influenced in the right direction. I think that it, among other things, entailed influencing the balance between GABA and glutamate. Christopher Gillberg was also interviewed in Expressen about something that sounded like it was related to this area. What is the current status of that type of medication?

ANSWER:
We have for a long time been planning a medication study with the substance Bumetanide (Burinex), which has been demonstrated to do just what you are referring to, influence the ratio of glutamate and GABA in a favourable way. The study has been approved by an ethical review board, but we have, in spite of applications, been unable to secure funding for it and therefore not been able to start the study yet.

(v) QUESTION:
If you think that inflammation might be connected to autism symptoms: anti-inflammatory diet has many vocal proponents. Do you believe there are diets that can reduce a low grade inflammation in the body? If so, can this help people (primarily children) with NPD’s?

ANSWER:
The results from different research studies have been unable to conclusively show that specific diet can serve as a treatment alternative in cases of autism. However, a child with autism may, in addition to autism, suffer from a specific dietary intolerance that may require examination, e.g. gluten intolerance or lactose intolerance.

(vi) QUESTION:
My last question is regarding your own research: what are you currently doing that may potentially be linked to symptom alleviation or treatment concerning NPD’s in general and autism in particular?

ANSWER:
Regarding autism we are hoping to be able to perform treatment studies with Bumetanide to different subgroups, e.g. autism in Fragile X, in tuberous sclerosis and in Rett syndrome, as well as for children and adolescents with autism where one so far has been unable to determine the medical cause. GNC is also participating in several studies concerning treatment of ADHD.

ELISABETH FERNELL


QUESTION 7

Decision makers, especially in the world of education/schools, are still not planning for students with differences in neuropsychiatric function. Both the responsible authorities and schools themselves still treat students with autism, ADHD etc as though they are unique, individual. In addition, the mere idea that NPD’s are even real and prevalent among the population is more criticised and questioned than ever. The questions apply to children and adolescents, age 18 or younger.

(i) QUESTION:
How many are considered to have ADHD/ADD in Sweden today?

ANSWER:
Around 100 000 (of whom approximately half are undiagnosed)
According to the Medical Products Agency (2016), 4.5% of boys and close to 2% of girls between the ages of 10 and 17 had medication prescribed for ADHD in 2014.

(ii) QUESTION:
How many are considered to have anything within the autism spectrum?

ANSWER:
Around 25 000 (of whom most are diagnosed)

(iii) QUESTION:
How many are considered to have other differences/disorders in neuropsychiatric function?

ANSWER:
Around 75 000

(iv) QUESTION:
How many in Sweden today are diagnosed with any of the disorders outlined in the questions above?

ANSWER:
Probably around 80 000 (records not searched for last year, however)

(v) QUESTION:
How many are presumed to be undiagnosed and would qualify for diagnosis?

ANSWER:
Around 100 000

(vi) QUESTION:
How many are considered to have dyslexia, dyscalculia?

ANSWER:
Around 100 000 (large overlap with ADHD and other NPD’S)

(vii) QUESTION:
How many are considered to have a language disorder?

ANSWER:
Around 50 000 (many of these will later end up getting dyslexia, and the overlap with ADHD, autism and other NPD’S is also very considerable)

(viii) QUESTION:
How often do several of ADHD/ADD, autism, other NPD’s, dyslexia, dyscalculia and language disorder overlap within one and the same person?

ANSWER:
Almost always (at least 85%, probably more)

ELISABETH FERNELL/ CHRISTOPHER GILLBERG



We will reply to more of your questions next month!

Regards from the GNC researchers.
 

  

Page Manager: Anna Spyrou|Last update: 6/20/2016
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