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MAY 2017

QUESTION 1

QUESTION:
Thank you for taking the time to do Q&A's!

I want to start off by thanking you for the fine and nuanced answer I got to my question about stress at school and preventive measures (no. 6, October 2016). Even though it is sad to get confirmation that the majority of autistic individuals who stay home do so as a result of long-term stress at school, it was also a relief to get a definitive statement on the matter. As a result of this information, I have a few follow-up questions.

During the year that my two children have been home from school due to long-term stress, I have tried to find information that specifically addresses exhaustion and autism. But research on this topic is scarce, and I feel that it is easier to be heard and get sympathy/understanding with regard to the details of the exhaustion aspect, and that professionals find it easier to blame the autism aspect whenever things are not working at school. My experience, which I realise that I share with many other parents with homebound autistic children (I am part of a national network of parents where we have made the same observations), is that the children must first get time to heal from their exhaustion in order for them to have the energy to be in school again at all. But also that it is very, very hard to get adequate and targeted advice regarding how children can best recover from an extended period of exhaustion. I have had to do some reading on how adults with exhaustion syndrome are treated, and have concluded that time to rest from the stressful environment is absolutely necessary, and that the child also needs support in getting started doing with kind of physical activity – the only thing proven to have a possible positive influence on exhaustion. The fine book, Inte bara Anna (“Not just Anna”), addresses stress and Asperger’s, but it is based on one single case that one special educator followed for a long time, and I would like advice from doctors and psychologists who have met a larger amount of children with exhaustion, and how one might think about this. My experience is that it is very hard to get sick leave for the child based on exhaustion, and that too much emphasis is put on getting the child back to school (perhaps primarily because the school keeps pressuring by pointing out that school is mandatory and threatening to report their concern to social services if one cannot, as the child’s parent, manage to get them to school). And that the intervention efforts that one is able to request with a child on sick leave, such as home schooling, may not be the most optimal solution when the child needs long-term rest in order to be receptive to education at all. It is also as though different authorities won’t quite admit that children can be affected by exhaustion, and that the suggested solutions do not follow evidence-based recommendations for how adults with exhaustion are treated. (This results in individual families being very severely affected, and not getting adequate support from society. For example, one can only stay at home on account of child care 120 days a year for one child, which is far from enough if the child in question is exhausted. The care allowance cannot cover the loss of income, and isn’t enough to cover all the additional time spent. And so on and so forth.)

So my questions are as follows:
1) what expressions of stress might parents and school personnel be alert to so as to quickly make adjustments, thereby preventing that the child becomes exhausted?
2) if a child should still end up being exposed to stress for a long period until it eventually becomes too much, i.e. leads to exhaustion, what is the recommended treatment?
3) What does the international research community say about (autistic) children and exhaustion?

ANSWER:
Thank you for your extremely important follow-up questions, answered/discussed below!

1) what expressions of stress might parents and school personnel be alert to so as to quickly make adjustments, thereby preventing that the child becomes exhausted?

One sign that the school situation is much too challenging/demanding relative to the child’s abilities, or due to social hardships or vulnerability, can simply be the very fact that the child does not want to go to school or that he/she shows symptoms of worrying, depressive mood or behavioural difficulties in conjunction with time spent at school or in preparation for school. These “bodily symptoms” might of course be caused by something else, but may in some children be an expression of a much too demanding and therefore stressful situation at school. If the “symptoms” also arise in a fairly predictable manner (e.g. on Sunday nights, or before tests or outdoor recreation days), they might provide additional clues regarding what is challenging for the child. It is our experience that one should not “wait and see” when it comes to students with autism showing resistance towards going to school, but rather immediately investigate what needs to be done in order to reduce the stress level, and this should be done whether the student is meeting the minimum learning goals or not. This should not then primarily be a question of the child with autism training various skills so that they are able to cope with this stress. Instead, school personnel– primarily after conversations with the child and others in his/her environment – should ask themselves which adjustments and what specific support is necessary in each individual case.

2) if a child should still end up being exposed to stress for a long period until it eventually becomes too much, i.e. leads to exhaustion, what is the recommended treatment?

It would of course be ideal for stress reactions in children to be recognised so that the situation can be changed at an early stage. If the stress symptoms are not recognised and the child has instead been affected by exhaustion in the way that you describe it, one must in each individual case make an assessment and mapping of the child’s skills and difficulties. Such an evaluation requires a doctor, psychologist, special educator and potentially also a school counsellor to collaborate with parents and children. What one must then investigate or do is dependent on what has been investigated previously and what prior knowledge one has about the child’s functioning, e.g. concerning sleep or in different cognitive functions, and also regarding sensitivity to specific sensory stimuli. Discussion and collaboration with representatives of the school and the school’s student health team are also needed. One of the goals has to be achieving a functional and tailored situation for the child, with regard to both time spent at school and free time, and this is something that also demands a great deal of perseverance when things have progressed as far as in the situation you describe.

3) What does the international research community say about (autistic) children and exhaustion?

Children with autism are of course a very heterogeneous group; the degree of autism varies, their general intelligence levels and intellectual profiles vary, and so do the degrees and types of other, comorbid (concurrently existing) disorders found in different children with autism.
From clinical experience, we know that there are many factors that may, when associated with demands, create stress and also symptoms consistent with exhaustion.
Research specifically regarding “school-related exhaustion” in children with autism is exceptionally limited, but general sensitivity to stress among many with autism is something that has been well established in the available research literature. This often manifests in chaotic and loud environments with lots of people (i.e. like in any typical school). This is one of the reasons it is so important to try and make sure that students with autism are provided ample opportunity to rest throughout the school day.

JAKOB ÅSBERG JOHNELS & ELISABETH FERNELL


QUESTION 2

QUESTION:
We have a son of about three years who was diagnosed with autistic syndrome in May of 2016. He has gone through extensive medical examination (genetic, metabolic and neurological) that did not really show anything. However, an MRI performed in August of 2015 showed signs of minor unspecific signal changes in periventricular white matter and that an element of delayed myelinisation might be present due to minimally increased signal in bitemporal subcortical white matter. We were given the explanation that in the places where this is visible, there are pathways used by and for vision, hearing, "social competence" etc. However, no one really seems to know what the clinical relevance of this is and what parts of his poor social skills and delayed language development are caused by these changes and his autism, respectively.

How commonly are these types of changes detected in MRI scans of children with autism? And is there any understanding as to what causes what? Our son's language skills have made great strides in just two months and he is suddenly able to produce lots of words and identify much of what he sees. However, he communicates/interacts very poorly with the words he has learned, still has poor language comprehension (although improved). I'm wondering if the "word explosion" that has occurred may be due to some parts of the brain maturing more in terms of myelinisation, and if so, what we might be able to expect going forward. His gross and fine motor development is adequate.

ANSWER:
Thank you for your question! In most cases, there are unfortunately no specific signs related to ASD in MRIs, and MRI cannot by itself indicate whether one individual has or does not have autism.

The changes that you describe appear to be unspecific and could be related to myelinisation, which at age 2 is still under progress. It is not always possible to relate the MRI findings to clinical functions. Although we try to identify an etiological diagnosis, we only identify a definite cause in about 20-25% of the children with autism with today´s methods.

In a study in which we examined children and adults with ASD, we observed signs of delay in white matter maturation, that tended to disappear in the adults - but participants were older (the youngest was 10) and we compared groups of individuals (Bakthiari et al., 2012).

A positive sign is the fact that your son has made great progress with regard to language. Performing a clinical follow-up is important and we assume that you have contact with a team within the habilitation unit that can provide different types of intervention and support.

NOUCHINE HADJIKHANI, ELISABETH FERNELL & CHRISTOPHER GILLBERG


QUESTION 3

QUESTION:
Our 11-year-old daughter (adopted) has been examined by a CAP unit and we have also been in contact with another CAP unit in Gothenburg. She meets all the diagnostic criteria for ADHD, and she has ODD and tics. She is intelligent and can keep herself in check during school hours. Her problems thus only manifest in her home environment, which means that we are not given any further help from CAP. They demand that the difficulties manifest in two places to proceed with any supportive measures. We have come to understand that this is a commonly occurring dilemma concerning girls with ADHD. We have made many adjustments, but even so this is takes an exceptional toll on our daughter and the rest of the family, which includes one older sibling. We would so much like to see a doctor to get an assessment regarding potential need for medication. The care centre refers us to CAP, even though we've explained that they are not giving us any further support. I work in care services myself and can see that a substance like Strattera would probably be of invaluable help. Could you help us with tips on where we should turn for help?

ANSWER:
Dear parents!
I understand your frustration all too well. The situation you describe is typical of girls with ADHD. Their most visible symptoms manifest at home, usually with behaviour that borders on acting out. It is true that, according to the diagnostic manual we follow, the symptoms should be observed in two different environments. But one can also look at other environments besides school, e.g. after-school activities, at friends' houses, in the examination situation itself. I assume she has difficulties in school even though her behavioural problems are not made very clear in that context. What one should assess is what your daughter manages to achieve at school. The teachers usually report that everything is fine, but when you get to the bottom of it, this turns out not to be the case. The teachers usually compare with some boy, who they see has more typical behavioural problems and ADHD. From your description I could not gather whether your daughter has been diagnosed with ADHD or not. Or whether the clinics have not given any diagnosis due to your daughter not having "visible symptoms" at school. I would also like to emphasise here that the most impairing problems in ADHD are those related to attention. Seeing them requires a trained eye. Individuals with ADHD are quite often unable to focus more than short periods of time, sometimes even minutes. In practice this mostly manifests as the person not getting started, not getting anything done, sitting around daydreaming while still trying to look like they understand everything just fine. This is typical of girls at school. There is also the diagnosis of ADHD without further specification, meaning that one might be impaired, yet not meet all the criteria of ADHD. Cases of ADHD without further specification are just as treatable with pharmaceutical substances as ADHD with all criterias met are.

I think that you should either write a self-referral to GNC in Gothenburg and describe the situation or go back to the clinic that you have the most overall confidence in and ask for further assessment by an experienced doctor. You should have the right to get that. Overlooking severe difficulties, such as what sounds like ADHD in this case, creates heavily increased risk of failures at school, lower self-estee., as well as anxiety and depression in later years. I therefore sincerely hope you get help now, when your daughter is still the age that she is.

SVENNY KOPP


We will reply to more of your questions next month!

Regards from the GNC researchers.
 

Page Manager: Anna Spyrou|Last update: 5/24/2017
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