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OCTOBER 2016

QUESTION 1

QUESTION:
I have to give some background to my question:
We have a son who is currently 5 years old, he turns 6 in October. He was diagnosed with autistic syndrome according to DSM IV at around 18 months of age, he was then considered high-functioning (and is still considered as such).
His speech development was delayed. We had his hearing checked and the result was that his hearing, according to their measures, was good enough that it was deemed not to be the cause of his delayed speech development. His hearing has been checked several times since he often got double ear infections.
Due to his delayed speech development, we started with PECS right after he was diagnosed, about one year after that he had progressed as far as habilitation services thought one could with PECS and so we started with AAC, which he quickly began using (at this point he is 2.5 years old). Over this next year, he was using language sounds such as the alphabet in both Swedish and English, and one word, “mamma”. After the trip to London where he started saying “bye bye”, more and more words started coming, mostly in Swedish but some in English as well, like e.g. “daddy” (he had difficulties saying “pappa”. (At this point, he is 3.5 years old).
After that his language starts developing in a way that is absolutely wonderful for us to experience. Last year when he was 4.5 years old, we understood that his language was more developed in English than in Swedish. In Swedish he spoke in 2-3 word sentences, in English he could say: “Mommy what are you doing in here? (I am sitting in his room clearing away and tidying up his things). I answer him in English after which he says: “Mommy I want a red ice cream!” I answer him in English that he will have to go out and ask his Dad for ice cream, which he still does in English.
At habilitation services they think that he is learning the languages simultaneously and that he does not file them as two languages but instead puts both “äpple” and “apple” in the same “box” so to speak. We can tell that his English is stronger than his Swedish, and he definitely knows the difference between the languages, as he asks us to tell him the Swedish words for things where he already knows the English term.
He “listens” to us better when we speak English with him, and he is better at expressing himself in English. He has had an iPad since the age of 2 (where many of the learning games were in English), he has also watched a lot of learning songs etc. on Youtube, and there are more of those available in English than in Swedish as well.
Both of us parents have Swedish as our mother tongue and first language. Even though the preschool has often assumed that one of us is a native English speaker, given that our son speaks as much English as Swedish.

The question/questions?
How does a child growing up in a Swedish-speaking environment end up being better at English than Swedish?
Is English “easier” or more predictable in speech and composition than Swedish?
Is there any connection between being autistic and finding English to be an easier language?
What is it like for autistic children from other countries – do they also sometimes prefer English over their mother tongue?
I suppose the big question really is: How did our kid get so good at English?

ANSWER:
This is no simple question, and there is no description to be found in the available research as to how monolingual children with autism themselves choose to become bi- or multilingual. However, we have been asked this question a number of times before – and have experience of many children who were late in their Swedish speech development but later developed very good/excellent skills in e.g. English, but also other, less common languages that they for some reason had become interested in or even obsessed with at an early stage. Below we will try to reason how English has become so interesting specifically for your child.

What you describe about your boy’s language development is quite typical for children with autism, many initially have delayed speech and language development (which most of the time initially is a result of them not understanding the meaning of communication). When they learn to use speech more functionally (sometimes via PECS or AAC), they understand the practical use of speaking. Some children with autism barely speak at all before 2-3 years of age, only to then, in a matter of a few months, develop an almost “adult”, grammatically correct spoken language. If the child is interested in language and motivated and fascinated with words, they only become even more alert to gaining new words (niche-picking). Already at the age of 2.5, the boy was able to go through the entire alphabet in both Swedish and English, even while still only using the spoken word “mamma”. How had he learned that? We believe that he first encountered English through iPad, apps, and games. Through that he got both visual (images) and aural (sound) feedback and the opportunity to view or listen to things many times. This kind of repetition is important for consolidating learning. Then he was eventually more motivated due to the trip to England and maybe also your positive feedback to his gradually improving speech. The strange thing is how he was then able to use his English in a manner functionally connected to different activities, and generalise it to other environments like e.g. preschool.

If we recall correctly, a year or so ago, there was a programme on UR/Kunskapskanalen on a high school youth with Asperger’s syndrome who only wanted to speak English, and where English had become a “special interest”.

According to current research, bi- or multilingualism can be positive even for children with autism, while it is more doubtful whether this is the case for small children with ASD and intellectual disability. On Youtube we found some anecdotal examples; a parent who talked about how their child, with Chinese (Mandarin) as mother tongue, became interested in Spanish and started speaking it.

Just like the people at habilitation services, we believe that right now he is gathering words from both languages in the same “box”, but soon he will need to start organising his vocabulary even more effectively. It would be very interesting to study his vocabulary and language further, e.g. testing the boy’s comprehension and production in English and then comparing it to his comprehension and production in Swedish.

CARMELA MINISCALCO AND CHRISTOPHER GILLBERG


QUESTION 2

QUESTION:
Our child is diagnosed with autism and language disorder. For the first 2.5 years of his life, our child’s development and speech was adequate for his age. After that, his speech successively disappeared over just a few months, from about 100 words in his vocabulary to zero. Other skills and traits were changed drastically as well. From having been a child who spoke, liked friends, kicking a ball around, playing with toys, being able to point out body parts etc, he “disappeared” into “his own world”.
Questions:What is it that makes it possible for a child with autism to experience developmental regression, and why does their speech disappear?

ANSWER:
It is not uncommon for previously acquired skills to regress in children with autism. This goes for their language as well. One explanation model for this is that the learning ability itself is there, but without a deeper understanding of the meaning and purpose of communication. This results in the child lacking the drive to continue developing their language and that they eventually stop using it. Social and motor skills can also regress. This often happens between the age of one and two, but can also occur later. If a regression of skills is recorded, it is important to examine underlying physical causes such as for example genetic syndromes, epilepsy, or immunological causes. These examinations are performed by a medical doctor. Depending on local procedures and regulations, this may be a paediatrician, a child neurologist or a child psychiatrist.

ANNE-KATRIN KANTZER


QUESTION 3

QUESTION:
We have a teenage daughter with ADHD and unbridled RAD, 14 years old. She is about to spin completely out of control. She is my stepdaughter but I have been present in her life since she was 2.5 years old. We also have two more daughters, aged 6 and 8. No diagnoses that we know of there yet, but nothing that worries us. The only thing that might lead to this diagnosis in our case, is neglect. There has not been abuse or maltreatment to such an extent that her needs have not been met. We are going through the whole deal with social services and CAP but no one seems to understand the kind of problems we face, we have been going through that process for many, many years now. Is there anyone in Sweden who is really knowledgeable about RAD specifically, because it feels like that is the diagnosis that stands out the most. There is no real relationship or attachment to our daughter right now, she thinks that only she herself can satisfy her own needs. This can be inferred from her current lifestyle, lying and stealing 24/7. Where can we turn?

ANSWER:
I am so sorry to hear of the struggles you are having with your 14 year old. Your daughter’s tendency to think that only she can manage her needs-rather than engaging you in helping her – is the core symptom of RAD and we believe that it arises out of her experience of neglect in early life. Probably, because your daughter’s needs were not responded to appropriately when she was a tiny child, she has become habitually used to sorting everything out for herself and is untrusting of you as her parent. This type of behaviour is really tricky to deal with as a parent because the love you have to give doesn’t quite feel as if it is “sinking in”. Mary Dozier (a wonderful developmental psychologist from Delaware in the US) suggests “gentle challenge”, i.e. trying to offer the young person what they need rather what they are (not) asking for, but obviously this is much harder with a teenager than with a younger child since typically developing teenagers are starting to be more independent anyway. There are some books and DVDs available from the Clinical Psychologist Dan Hughes (http://www.danielhughes.org/html/booksdvd.html) that you might find helpful as he has treated children and young people right across the age range with RAD. You obviously already have a good insight into the roots of your daughter’s problems and this, in itself, is likely to be gradually helpful to her. Best of luck in your journey.

HELEN MINNIS


QUESTION 4

QUESTION:
I have a question: If one would like to know whether there is a genetic cause behind one’s child’s neuropsychiatric diagnosis/diagnoses, what is the best course of action? What tests are available (please describe these thoroughly)? My child has autism, mild mental retardation, ADHD and epilepsy, and I would like to know the cause of these conditions.

ANSWER:
If a child has been diagnosed with the conditions that you describe, this process also includes making a medical examination with the aim of assessing what might be the explanation/medical cause of the child’s disorders. As part of this medical examination, the doctor gathers information from the parents on a number of different factors; e.g. whether there are family members or other close relatives who have had similar difficulties, whether there was any complication during the pregnancy, whether the child was born very prematurely, regarding the child’s development in various areas. Finally, the doctor also examines the child. In cases with the same combination of disorders that you describe that your child has, additional medical examinations are almost always performed. An examination of chromosomes and in some cases of specific genes (on the chromosome) is performed using a blood test, and other blood tests might often be carried out as well, e.g. metabolism tests. Your child has probably been given an EEG, since you describe that he/she has been diagnosed with epilepsy. When attempting to address specific questions, a so-called MRI scan is used to examine the brain. Every child must be assessed individually according to their respective symptomatology, and the doctor decides, in consultation with parents, which tests are important to analyse.
Today, largely due to advances in genetic technology, we are more and more often able to find a medical explanation, but for many children we cannot identify the exact cause. Generally speaking, we are more frequently able to identify the exact medical cause in cases of severe intellectual disability/mental retardation, but not as often in cases of mild intellectual disability. However, the doctor can virtually always identify the time period during which the cause of the disability occurred; if the cause can likely be traced to the period before birth, during pregnancy (prenatally), in conjunction with or after birth (peri- or postnatally). In conclusion, my answer to your direct questions is that the child can be examined through a blood test that is sent to the hospital’s clinical genetic department.

ELISABETH FERNELL


FRÅGA 5

Thank you for your e-mail describing your son and the examinations he has gone through. Here are our answers to your questions (applicable to examinations of children, adult examinations usually have to be performed in a partially different manner):

QUESTION 1: What is actually required in order to give an autism spectrum diagnosis? What are the minimum criteria that must be met?

ANSWER:
The diagnosis autism (“autism spectrum disorder” in American literature), should describe function and be given on the basis of a weighted assessment of information on and from (whenever possible) the child, along with observation and neuropsychological testing of the child. Information is gathered on the child’s early and current development within different areas of function, focusing primarily on (1) ability and interest in social interaction/communication and (2) the prevalence of certain behaviours, monomaniac interests and abnormal reactions to sensory inputs. Functionally impairing problems in these areas are required for diagnosis. Other very commonly occurring features are extreme selectiveness regarding food, difficulties dealing with changes and “transitioning” between different activities, as well as other difficulties relating to flexibility. The required number and respective severity of symptoms for diagnosis can be found e.g. in the international diagnosis manual DSM (Diagnostic and Statistical Manual of Mental Disorders). The Swedish DSM-5 (from 2013) uses the general diagnosis autism for all different clinical presentations of the condition. In its predecessor, DSM-IV, there were separate criteria for e.g. autism/autistic syndrome, autism-like conditions (“PDDNOS”) and Asperger’s syndrome (a diagnosis that can still be given but is now coded/registered under the same heading as autism). An autism diagnosis must not be given without simultaneously weighing in the child’s general development level, language ability, and the prevalence of other disorders/conditions.
The diagnosis manuals detail exactly how many symptoms must be prevalent in order for the diagnosis to be considered at all, and that shortcomings in social interaction should be particularly prominent among these symptoms in order to meet criteria for an autism diagnosis. One must not simply allow an “autism examiner” to merely “check off” symptoms and diagnose e.g. only on the basis of standardised interview and observation; it is important that a weighted assessment is made, that information is gathered by doctors from parents, and that the doctor in question meets and examines the child in person. The child must also be examined by a psychologist in order to get an idea of the child’s general cognitive development level, linguistically and non-linguistically, and the psychologist also assesses the child’s ability for social interaction and communication. The examination team should also include a pedagogue who can look into the child’s situation at preschool/school. Moreover, a speech and language therapist is often enlisted as well, to specifically assess the child’s speech, language and communicative ability. The examining doctor and psychologist then, in collaboration with the other examiners, compile all the information and make their final judgment regarding diagnosis/diagnoses, and discuss their conclusions with the parents. The doctor also assesses medical aspects/causal factors and which medical examinations should be performed in each individual case.

QUESTION 2: We think that the doctor at the child and adolescent clinic should have referred us to the CNC, when the aggregate results of the ADOS did not indicate any autism spectrum disorder. Should she have done so?

ANSWER:
In Gothenburg the majority of preschool children, as well as many school children, are referred to the CNC whenever there are indications of a child potentially having autism. This type of referral can be made whenever the team or doctor with whom the child first had contact would like additional assessment/examinations to be made. One can also write one’s own request for care (“self-referral”), either for oneself or as the parent of a potentially affected child.

QUESTION 3: Where does one “draw the line” between pragmatic language disorder and autism spectrum disorder? How does one diagnose a pragmatic language disorder and who is best equipped to do this?

ANSWER:
Pragmatic language disorder means that the child has difficulties with mutual aspects of communication, e.g. turn-taking rules, sticking to the topic of conversation at hand, knowing which information one’s conversation partner needs in order to understand what is being told, and difficulties in interpreting both linguistic and non-linguistic social signals, like “reading between the lines” and picking up on/interpreting faces/facial gestures. A person can have both pragmatic language disorder and autism, but it also exists as its own diagnosis in DSM-5. If pragmatic language disorder is given as the main diagnosis, this means that the child does not have autism. Speech and language therapists can give the diagnosis pragmatic language disorder, but we believe that this should not be done without consultation with both a doctor and a psychologist, at least for children at preschool age.

QUESTION 4: At the healthcare providers we have visited (child and adolescent clinics and habilitation services), we have found that the level of knowledge on the scope of language disorder and dyspraxia (e.g. delayed socio-emotional development) has been very poor/unsatisfactory. What is the reason for this? I mean, Kannebäcksskolan has lots of knowledge on the subject, and (I assume that) both the CNC and Sahlgrenska’s speech and language therapy department does too, and these are all located just twenty or thirty kilometres away.

ANSWER:
Speech and language therapists for children usually have a great knowledge base regarding language disorders and the same can be said for habilitiation services where speech and language therapists work. The CNC is a special unit for examination of neuropsychiatric/neurodevelopmental disorders. They employ the region’s most prominent experts in the entire field of neuropsychiatry.

QUESTION 5: How should we proceed? I feel that he should be re-examined, but I do not know where we should turn.

ANSWER:
All children with early developmental abnormalities need follow-up over time. Renewed evaluations of function are needed generally in order to make a verdict on diagnosis – the symptomatology can change over time – which in turn aims to produce material regarding what kind of support the child needs. Since you want a re-examination, for example regarding whether your son meets criteria for autism or not, the doctor at the child and adolescent clinic can refer you to the CNC for a renewed evaluation. If you, for whatever reason, should encounter any difficulties in this process (there should not be any problem), you can send us a self-referral.

ELISABETH FERNELL AND CHRISTOPHER GILLBERG


QUESTION 6

QUESTION:
Both of my boys exhibited clear symptoms of being unhappy at school, which led to them being increasingly delinquent from school and eventually what is now non-existent school attendance. As you may know, the Autism and Asperger Association unfortunately has statistics indicating that ever since the new inclusion concept was launched in schools back in 2010/2011, almost half of children with autism have periods of time, sometimes long, sometimes short, when they end up staying at home.

In my experience, the school has been unable to quickly pick up on signs that they need extra support, and the thought of autism had never even occurred to me as a parent before I reached out to a school psychologist myself in order to discuss how I could best help my boys. The boys got their diagnoses (Asperger’s/autism) when they were 10 and 9 years old, respectively. I am both surprised and appalled that the school – which is supposed to have so much greater experience of a large amount of children, unlike us parents who live with our own and lack access to the same kind of overview – were unable to spot mine and other autistic children and give them appropriate support from an early stage.
My experience from this journey is that schools have to be better equipped to at an early stage detect signs and symptoms in children who deviate from the norm, even when this is not immediately apparent. (Both of my boys have normal/high intelligence, and no visible tics or other traits that might trigger suspicion of autism, other than behaviour that sometimes occurs when they are feeling stressed. Neither of the children act out). As their parent I have been quick to express my concerns to the school about the children’s wellbeing and absence from school, but constantly been met with explanations like “give it time” and “see what happens”. The intervention measures that have eventually been put in place have all been too late and been unable to put an end to the school delinquency problem. So my question to you is:
What early signs and behaviours can function as signals to school personnel that there are children with problems in need of detection (and examination)? How might one design a manual aimed at the prevention of school delinquency among children with autism?

ANSWER:
Our experience tells us that children with autism staying at home is, in an overwhelming number of cases, a reaction to the stress it entails for them to spend time at school. But what actually causes them stress can vary from person to person: Some seem virtually “allergic” to the demands placed on them to work day in and day out in school, on things that they may or may not even see the point in doing. Others feel stressed due to transfers, abrupt endings/interruptions or demands for general behavioural compliance. Still others may experience stress linked to social interaction with other students in the class, or the bullying during recess that we unfortunately know is quite common, perhaps especially among those with relatively “mild” autism symptoms, etc.

A general manual for preventative measures against staying at home should therefore, in my opinion, centre on how one, using adjustments to the child’s everyday environment, improved knowledge among school personnel and clear communication, can reduce stress in everyday school situations for students with autism. A manual against staying at home for children with autism would thus largely resemble manuals that focus more generally on describing good “autism pedagogy”: clear schedules with visual support, clear communication around the child (for example so that the parents are able to help with preparations); explicit and structured teaching of school-oriented skills that often present difficulties (such as reading comprehension and writing); direct help with choices and free working methods; support in fitting breaks for rest into the school day (unstructured recess is quite often even more strenuous than lessons, and as such no real break at all); agreements on expectations of behaviours that have been reached in direct conversations (or in conversations using an application for facilitating visualisation of concepts for the child, like Ritprata) with the student; making it possible and creating clear strategies for how/to where the student can withdraw if/when the stress level in the classroom or during recess gets too high; elevating the level of knowledge among school personnel (so that e.g. everyone understands that “clarity and structure” are not at all synonymous with “discipline and strictness”); general active anti-bullying work at schools, etc. Sometimes – although far from always – such adjustments are best made in a specific (small) teaching group.

One thing that research on school refusal has clearly indicated is the importance of good collaboration surrounding the child – both to counteract the child staying at home long-term and to try and get the child back to school when they have been staying at home for a while. There are also many people who have found that, once it has been established that the child is staying at home, it is important for them to have a contact person that they can trust. A problem whenever the collaborative network breaks down is that this increases the likelihood that frustrated conflicts occur – the family may not feel that the teachers are doing their job to help the student; the teachers in turn might feel that it is the parents who are facilitating/enabling the child staying at home (“no wonder he chooses to stay at home, there he gets to watch movies in bed all day”), while the special educator might feel that child and adolescent psychiatric services or social services must assume greater responsibility, etc. Everyone feels alone in their efforts, and in such conflicts, the child ends up being the big loser.

As I highlighted initially, different children can be sensitive to different aspects of school activity. Some children and adolescents among those who stay at home exhibit a generally demand avoiding behaviour (which has sometimes been called PDA/Pathological Demand Avoidance or Extreme Demand Avoidance), which in many cases is brought to a head at school, even though it also permeates virtually all areas of life. In these cases, “regular autism pedagogy” or “stress reduction” often do not work, but the need for collaboration between school, healthcare services and the home is indeed even greater in this group, where one must implement highly individualised intervention measures.
We at the CNC have a long tradition of trying to support collaboration between school, the home, and all of us who work in healthcare services in conjunction with the investigation, and to this end we employ pedagogues who (along with the doctors and psychologists) participate in the investigations, as a kind of bridge between healthcare services and the student’s school. We have had good results using this cross-professional model for children staying at home as well. But unfortunately we must currently defend this model against criticism from people who have not understood the importance (and the long-term economic, psychiatric and humanitarian gains) of collaborative networks around children with autism (and who therefore instead feel that there are always “some other people” who are responsible for getting the child with autism to come to school once problems arise).

JAKOB ÅSBERG JOHNELS


QUESTION 7


QUESTION:

I have a couple of questions regarding sensory oversensitivity and sensory overload. It is very hard to find interesting texts on this subject, and even harder to get any help in handling it, so please, PLEASE write more about it! Unfortunately I am not capable of writing the questions in English, as I do not know the names of everything, hope this works anyway.
Is there any treatment available for sensory oversensitivity?
I have read about “The Wilbarger Brushing Protocol”, is it just a pure hoax or is there any substance to this treatment? Is it used in Sweden and if so where?

What distinguishes sensory overload from brain fatigue? For the latter, rest is usually ordinated as the best way of recovering, but for the former, they usually refer to activities that “replenish energy”.

Who is the leading authority in this field?

ANSWER:
Sensory oversensitivity and sensory overload are commonly reported in neurodevelopmental disorders, and individuals with autism spectrum disorders can exhibit strong reaction to all kinds of stimuli, including sounds, lights, smells, taste and touch. The reasons for this oversensitivity are not completely understood, but there is more and more evidence for the presence of a so-called excitatory/inhibitory imbalance in the brain of individuals with ASD, that is, a brain that does not have enough internal inhibition could be at the basis of these problems (and could also be the reason why there are so many more cases of epilepsy in this population). There is definitely more research that needs to be done in the domain, as this sensory oversensitivity seems to affect the entire spectrum, from those with severe intellectual disabilities to those with superior intelligence.

The most obvious way – yet not always so easy to implement –to deal with this oversensitivity is to reduce environmental stimuli (but only those that are relevant for each individual, not generally for all people with autism). For example, avoid being in neon lights rooms, that can be very annoying to children with ASD, avoid strong smelling produce or perfume (which is not extremely common in autism, but can sometimes be the main reason that the affected individual “avoids” or even “hates” certain people). Also, habituate them to wear ear-plugs or ear-protections when there are loud sounds and avoid or gradually habituate them to specific low-level sounds that they appear to be panic-stricken by. Take away labels from clothing, that can create a lot of distress (and is extremely common in autism). And try to have the child ‘tame’ the stimuli, and habituate with them: controlling the level of the sound on the radio, increasing the brightness of a lamp, etc.

The Wilbarger Brushing Protocol has no real scientific support. It is an approach that was developed in the 1990’s that requires a very heavy commitment: each intervention should last between 90-120 minutes, and should be done several times a day (some say even every 2 hours), for several weeks, which is extremely time-consuming. The one study that evaluated this program (Segal R and Beyer C (2006) Integration and application of a home treatment program: A study of parents and occupational therapists. American Journal of Occupational Therapy, 60, 500–510) reported that it was very difficult to adhere to it. There are no scientific studies reporting efficacy of the program.

Brain fatigue is often described by adults with ASD with normal intelligence, who have to interact with others in daily life. It takes them a lot of effort to process all the social signals that they are confronted with, and they typically describe the need to be alone to recover after being surrounded by others for a couple of hours.

NOUCHINE HADJIKHANI AND CHRISTOPHER GILLBERG


We will reply to more of your questions next month!

Regards from the GNC researchers.
 

 

Page Manager: Anna Spyrou|Last update: 10/4/2016
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