Till startsida
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November 2016

QUESTION 1

QUESTION:
I live in Australia it has taken me about 8 years to come across PDA (Pathological Demand Avoidance). My son has recently had a diagnosis of ASD and ADHD. Currently trailing Vyvanse medication for ADHD. My son says it is better for him at school but is certainly not better for him at home. The psychiatrist does not know about PDA! The medication has heightened sensory issues and increased his anxiety. PDA is not yet recognised in Australia so I am just starting my quest for the right kind of help as I have nowhere to go! He is 11, should I be trying to treat the anxiety (medically) along with strategies first? I would appreciate if you could give me any type of help/advice.

ANSWER:
Pathological demand avoidance (PDA) is seen in children who will do anything to avoid meeting demands of adults and children alike. The behaviours “used” in maintaining avoidance range from openly oppositional or manipulative to “extreme shyness”, passivity, and muteness.
Childhood onset PDA has been suggested to be a variant of autism spectrum disorder (ASD) or of oppositional-defiant disorder (ODD), but it is more likely that any kind of early symptomatic syndrome eliciting neurodevelopmental clinical examinations (ESSENCE) (Gillberg, 2010), including language disorder, mild intellectual disability, ADHD, ODD, and/or ASD could be the underlying or associated problem in PDA.
Even though PDA has attracted quite a bit of clinical attention in the UK and other parts of Europe, virtually no research has been published in the field so far (Newson et al., 2003). We do not yet know how common PDA is even though experienced clinicians throughout child psychiatry, child neurology, and pediatrics testify to its existence and the very major problems encountered when it comes to intervention and treatment.
Intervention and treatment currently rest almost exclusively on guess-work, clinical experience, and trial-and-error. It is one of the most “difficult-to-treat” constellations of problems in the whole of child and adolescent psychiatry. Strategies developed for ASD, ODD, or ADHD are often ineffective and parents, teachers, and clinicians may be driven half crazy by the child’s stubborn refusal to cooperate and by avoidant, manipulative, and exhibitionist-style shocking behaviours.
So, to answer your questions about treating your son’s anxiety with medication or pedagogic strategies: In our experience children with ASD (and PDA) may have sensory issues and anxiety as important parts of their symptomatology and these may be heightened by stimulant medication alone. SSRI medication may ameliorate these, and can be used together with stimulants (maybe also lower the dose of the stimulant). Strategies for reducing anxiety may also be helpful. You can read more about PDA on our website, www.gnc.gu.se

CHRISTOPHER GILLBERG, CARMELA MINISCALCO, MATS JOHNSON


QUESTION 2

QUESTION:
Hi! I am very concerned for my sister’s family – they have a son, 17 years old, who has been treated in accordance with LVU (The law for specific regulations concerning care of children and adolescents) since the summer of 2014 but not yet received any examination-based diagnosis. His family has done everything in their power to make his current life situation as good as possible, but their son has yet to get any kind of complete examination, one where they feel that there is a treatment providing support and help. While he was attending school, he had a personal assistant on account of ADHD and autism, but since LVU entered the equation, there has been no effort toward rehabilitation. There is much more to tell but I’m wondering, as his mother’s sister, can I do anything to help my sister’s family? I feel like they’re virtually on the brink of collapse. They live in Bollebygd and he is currently admitted in Lysekil. With my regards – and sincere worries!

ANSWER:
I completely understand that you’re worried about your niece and his family. What you can do is make sure to learn as much as possible about autism and ADHD. You can for example contact the organisation Attention, or the Autism and Asperger Association in Sweden where you can get information pamphlets, literature tips or attend lectures and meet other friends or relatives of people with the same kinds of problems. Perhaps you could join your sister or brother-in-law when they are in meetings with e.g. Social Services. You could then ask them about habilitation measures and check whether the staff is getting any guidance with regard to autism (and ADHD).

ELISABET WENTZ


QUESTION 3

QUESTION:
I am the teacher of a young girl in upper secondary school who has been diagnosed with Asperger’s and selective mutism, is of normal intelligence, and attends a national programme at the upper secondary school level but in a teaching group with certain modifications. She and I have talked a bit about what having selective mutism is like for her. She says that she often wants to say things but that nothing comes out. In her own words, “There are often awkward periods of silence when I can’t say anything”. Encouraging her to use phrases like “I can’t think of anything to say at the moment” and the like is of course unsuccessful. She wants help in overcoming this. Neither she nor I, nor her family can find professionals with the knowledge/expertise to help her. Not at the county level, and not through private channels either. As a result, we now need to turn our attention well outside our own geographic sphere in order to find the right person/persons who would be able to help her with this.
We’re all wondering, what can we do?
I also have another question with regard to not talking. We have encountered adolescents who for unknown reasons won’t talk. Both child and adolescent psychiatric and habilitation services say that they can’t help them; because they don’t talk. They claim that it is impossible to treat them and even to examine them because of this. We feel despair as these are young people who are feeling bad and need help, in many forms, from different directions, but aren’t getting what they really need, and often they’re at home, without going to school, which just makes everything even worse. Well, you know exactly how it is. But really, is this how it is? Is it impossible to both diagnose and treat someone just because this person, who is suffering, is unable to talk about it? Aren’t they obligated to make some kind of effort for this young person who, in my view, primarily needs to establish a relationship to an adult with the ability to help him/her?

ANSWER:
Selective mutism means that one usually has normal speech and that one can speak without any problems or limitations in some environments but not in other situations. Selective mutism is often connected to anxiety such as social phobia, but not associated to any single traumatic event (as it is sometimes portrayed on TV/in films). Treatment in cases of selective mutism is cognitive behaviour therapy (CBT) and in some cases medication as well. In cases of both autism/Asperger’s syndrome and selective mutism, both disorders must be considered upon treatment, and examination for differential diagnosis has a significant impact. In cases of combined autism and selective mutism, the person administering treatment must have knowledge of CBT, but also some expertise with regard to autism and what might facilitate communication, e.g. using visual aids, and taking their difficulties with affect regulation into consideration. Autism pedagogy with alternative communication and demand modification/low affective approach might thus be considered a prerequisite condition. Treatment in cases of selective mutism is outlined within the clinic/healthcare services but often carried out in school. In CBT treatment of selective mutism, there are often elements that are meant to be carried out by the child/adolescent in school, and as such, collaboration between the school, family and treatment personnel is essential. In CBT treatment, the child/adolescent learns how to approach anxiety reactions and how to use these approaches on a broader scale, in situations ranging from slightly to highly anxiety-inducing. It is important for teachers to have a permissive approach, promoting more speech and social interaction, and to not exacerbate the child’s social anxiety by subjecting them to increased public scrutiny in a way that the child would perceive as embarrassing. This is usually not a successful method in making the child/adolescent speak.
One crucial point of emphasis is that the child’s time at school should not focus on treatment but rather on allowing them to gain knowledge, and that the child should not be judged by their speech production. This means that schools should try to explore potential compensatory methods with regard to spoken language, for example, if there is a presentation to be held, the child/adolescent with selective mutism can record their presentation as a sound file at some earlier occasion. This, however, should be done after consultation with treatment personnel, so that the method isn’t counter-productive in relation to the treatment.
On to your second question. As a caregiver, to assess and at a later stage also treat adolescents who don’t speak, is a complicated but not impossible process. In many cases, a referral to a specialist unit with experience of specially tailored investigations, might be needed. Trying to form some opinion of the cause behind the adolescent’s lack of speech is paramount, whether it depends on strong disinterest/lack of motivation or whether it depends on psychiatric/cognitive factors. A detailed medical history on the adolescent’s development from early childhood to present day, along with a rundown of current behaviour and symptoms manifesting at school, home and during free time, provide a good basis for clinical assessment if the cause is some psychiatric or cognitive problem. If the adolescent in question is also able to participate in the investigation, there are more methods that do not require spoken language such as non-linguistic neuropsychological tests, self-scoring scales, etc. If either oppositional defiance or lack of will/motivation is the reason why the adolescent won’t speak, one must take on a heavier endeavour to create motivation and trust, one that admittedly takes longer but is at the same time often ultimately feasible.

EVA BILLSTEDT


QUESTION 4

QUESTION:
I have a question about “restraining” with regard to autism (Fragile-X).
My son lives at a nursing home and in their daily notes (that I have requested to see) it says that they use restraining as a method to calm him when he acts out. I don’t feel that this is a good method, but rather that it is a kind of assault. I have brought up many times that one must try to read him and divert him in stressful situations rather than confront him. Are there any written materials on this that I might read? The last restraining of my son was reported by a personnel member at the nursing home according to LEX-Maria and an investigation has been performed. Without talking to me, the home and the investigator have reached the conclusion that my son has not suffered any physical or mental harm from this, nor does he find it uncomfortable or worrying that the person who restrained him on these occasions is still working with him. I and others at the nursing home can tell that he gets low and starts worrying whenever she is around.

ANSWER:
In recent years, there has been a growing emphasis on the effectiveness of adopting a low-affective approach when faced with people with problem creating behaviour. The low-affective brand of pedagogy concerns how one can create a pedagogical environment defined by tranquillity and positive expectations, in order to reduce stress and problem creating behaviour, and focuses on practical methods and approaches. Bo Hejlskov Elvén, licensed psychologist, has published several books on this subject.

EVA BILLSTEDT


We will reply to more of your questions next month!

Regards from the GNC researchers.

Page Manager: Anna Spyrou|Last update: 12/19/2016
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