Till startsida
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APRIL 2017

QUESTION 1

QUESTION:
My son has general language disorder (impressive and expressive), a diagnosis he actually received too late, at the age of 23, simply because we did not know about language disorder. But he seems to also have some other type of disorder as he has difficulties handling money, remembering things, ends up misplacing/losing things all the time, forgets instructions, lacks a normal sense of time, struggles with theoretical and abstract thinking, is immature for his age...

He was negatively inclined towards the whole idea that there was anything "wrong" with him, and the diagnosis became the beginning of a downward spiral for him both mentally and emotionally. He is angry about the whole diagnosis and tries to find all kinds of strange explanations for why he is different. Furthermore, he has often ended up in bad crowds, triggered by other "regular" people of his age not wanting to talk to him, making him feel left out and misunderstood by the people around him. People have mocked him, calling him retarded, and taken advantage of him, seeing him as easy prey. In conjunction with one of these periods, he started using cannabis, in his teens, which I only think has made everything worse, and he refuses to give it up. Moreover, his understanding of the world around him and his overall level of knowledge are both severely underdeveloped and it is virtually impossible to talk any sense into him, and on top of all of this, he is uncooperative as well.

The occasions when we've managed to get him to talk to us a bit about these things, it has become clear how hurt he is by how others have treated him, how he tries to mend his soul on his own, even though we feel he is only getting more and more depressed, even starting to exhibit strange behaviour in terms of movement and gaze. He keeps getting these very weird ideas about himself and how one can see in people's eyes and movements what they are thinking. He is trying to use his gaze and movements to understand things better but it just makes him look crazy. He's started to run his hands through his hair and make strange eye motions as though his eyes are hurting. But he tells us that he is just trying to find peace or something along those lines. These things have started occurring only in the last year; after the diagnosis, and a few more times when he's been left out, along with the deaths of two family members who were dear to him.

He's been to a doctor who suggested he take anti-depressants (!) and talk to psychiatric services, advice which he firmly rejected.

I've looked for help and support for adults with language disorder, but I can't find anything. All research and supportive efforts are aimed at children, and the only thing I seem to be seeing over and over is how bad the outlook usually is for adults with language disorder in terms of career, relationships etc. - a rather bleak picture, in other words. And right now it looks to be going that way for him too, in spite of the entire family's effort to help him. He almost gets aggressive just from us mentioning psychiatrists or him needing some help. And I'm afraid of what is happening. Finding help is hard because most people don't know about language disorder and what it entails. He is currently at Samhall, undergoing work training, and not even they fully understand it. The other people there are a bit afraid of him as he behaves strangely. First and foremost, he needs help handling his mental/emotional troubles, but eventually he also needs help with accepting and handling his disorder. Is there anywhere we can turn to, some therapist with extensive knowledge on language disorder? Some research he might benefit from? Do you have any advice? I'm wondering whether EMDR or EFT, methods where conversations are not the focal point, might be able to help with the mental and emotional aspects? But then also, where he might be able to get help with his language disorder and development?

ANSWER:
You describe that your adult son has several symptoms aside from his language disorder. The fact that he started using cannabis in his teens is serious, and it is unclear whether he is still using it. If he is, substance abuse could be the cause of many of his symptoms. You also describe how "people have taken advantage of him, seeing him as easy prey", which is alarming. Given all the difficulties your son exhibits, an assessment of his intelligence is critically needed. If no such examination has been made, perhaps Samhall is in contact with a psychologist who could perform an assessment of his intelligence. Many people with various difficulties often show uneven distribution of intelligence, which is to say that they have both strengths and weaknesses. This makes it hard for the person to be understood by people around him, as he or she may sometimes come off as very immature, but at the same time be very skilled in other areas.

ELISABET WENTZ


QUESTION 2

QUESTION:
I wonder whether heredity is always an underlying factor in autism or if one can acquire it without any genetic component involved? My daughter is diagnosed with ASD level 1.

ANSWER:
Genetics make up an estimated 70-90% of the factors behind autism, but there are also other causes of autism such as very premature birth, prenatal injuries (e.g. rubella infection, certain medications), perinatal infections, perinatal hypoxia, meningitis at an early age.

ELISABET WENTZ


QUESTION 3

QUESTION:
My son was born in July of 2012. At four weeks of age, he was found to have hydrocephalus and a ventriculocisternostomy was performed. It failed and he was given a shunt at eight weeks of age. That shunt had major issues and for the most part, he has been excessively shunted. This has then caused him recurring episodes of vomiting and lethargy. He has gone through many surgeries, I can no longer remember how many, but in August of 2015, an antisiphon was introduced in order to help regulate the pressure. This resulted in a shunt infection with subsequent meningitis, and we were admitted for two months. X was periodically in truly dire straits and had to be equipped with an external ventricular drain most of the time. Finally he got a different kind of shunt in November of 2015, and so far it has worked fairly well.

Up until that hospitalisation, his development was delayed, but not beyond what might be characterised as normal. When we were discharged he could barely walk, but after a few months he seemed to be okay again. I still asked to see a neurologist though, and as his speech was so delayed (he talked a fair bit but seemed to lack any deeper understanding) we also got to see a psychologist and a speech therapist. Their diagnosis was pragmatic language disorder. However, they were unable to make any statements on potential other diagnoses, as X is unable to take instructions required to be able to perform the tests. We didn't get any help or training for the language disorder. In November of 2016 he got what was later concluded to be a Grand mal seizure. He threw up, was unreachable and couldn't quite stand. Half his face was drooping as if he'd had a stroke. He only sort of recovered the next day, when an EEG revealed that he suffers from epilepsy. He was started on medication (sodium valproate, i.e. Depakote/Episenta/Orfiril) and after about a month he started to get minor attacks and absence seizures every day (before that nothing). They increased his medication dosage but that only made things worse. He was like a different person. I tried to get an appointment with a neurologist, but had to wait two months, until February of 2017. We are currently phasing out the sodium valproate and starting him on levetiracetam (Keppra). The first days he was feeling so good and I haven't been that happy in a long time. It felt like I had my son back! Then it only got worse. Now he suffers more numerous and severe seizures than before, he trips and falls several times a day, his personality has "disappeared" again. He seems more and more autistic to me. In retrospect I realise that he may always have had autistic traits. I have wanted to get him examined but the psychologist says that this is impossible due to his language disorder. But after all, now it is worse than ever. Before, he used to be like other kids, except maybe a year behind his age peers in terms of speech. Now he only sometimes responds when spoken to. Other times he might cry and say he does not want to answer, or just ignore me. Practical things like "would you like a sandwich?" or "would you please put on your hat?" can be communicated. But if one asks something like what he did at daycare, he might respond with some quote from a children's programme, give me an arithmetic assignment or rattle off a sequence of made up words. He has begun speaking at an extremly loud volume and in a very clear and articulating manner. He can read but simply looks at the words, isn't interested in their meaning. He is also interested in other languages and right now all he wants to do is watch an English (note: this question has been translated from Swedish) children's programme about letters over and over again. He doesn't take any initiatives to do anything, doesn't engage in any pretend activities, and isn't interested in playing with age peers. However, he can talk and joke around with his baby sister (7 months old) and small children (like 1-year-olds) at daycare. He likes adults, and is adamant about wanting to hug certain adults. This might be some superficial acquaintance he has never met before, while he refuses to hug his aunt who has been close to him his entire life. He is INCREDIBLY confused and disoriented. I don't recognise this boy! Before the epileptic seizures happened, his speech was delayed and he had some cognitive problems. Now he's barely communicable, it is almost like there is no longer a person in there. It is incredibly disheartening, missing the child one previously had! Now for some more concrete questions:

Could something have happened in his brain when he had his Grand mal seizure (which I doubt since he was still his old self during his first week taking sodium valproate)?
What are the medications actually doing to him? Must anti-epileptics necessarily have such a strong influence on his personality? Keppra doesn't seem to be any better than Episenta.
What would happen if we chose not to medicate him? Would he really get more seizures? Right now his seizures are only even more major and numerous the more we medicate.
What are the medications and the epilepsy doing to his brain? Can he regain his personality?
Can autism occur as a result of too many brain operations or has he likely been born with it if he in fact has it?
Is it truly impossible to examine him for autism on account of his language disorder?
If he is autistic, what are the available treatment options?

ANSWER:
You have many questions and ponderings regarding your son. To some extent the answers will be a bit general since we do not know him and are unable to ask follow-up questions.

He has congenital hydrocephalus, a sign of an underlying malformation in the central nervous symptoms. And it has been a tough journey with different sunt problems. We know that epilepsy and autism are more common in cases of hydrocephalus, both as signs of underlying disorder in the brain's functions. Monitoring development is crucial for all children with some form of abnormality in the brain.

It is unlikely that the kind of epileptic seizure that you describe would have given rise to lasting changes in the brain. As you yourself write, he was his usual self afterward. It is more so the cause of the epileptic seizure itself that is affecting him.
Epilepsy medication acts within the nervous system. Unfortunately, a not too uncommon side effect is altered behaviour and mood. Keppra (levetiracetam) is a medication that may generate these side effects. When treating epilepsy, one does not always immediately "hit the mark" with regard to medication. Several switches in medication may be needed and if the epilepsy is difficult to treat, combining different medications can sometimes prove more effective. Sometimes medication can have the opposite effect of the one intended, i.e. by increasing the number of seizures, especially if the dosage is heavily raised. What would happen without any medication at all cannot be answered conclusively, but he does have an underlying problem with epilepsy that must be treated.
Epilepsy medication generally stabilises the signal transfer so that faulty electric activity does not spread. Behavioural effects cease when use of the specific medication in question is terminated. But the way he is now without medication will not necessarily be the same as he was before, since he is a child in the process of growth and development.

The cause of autism has not been established. We do know that it is tied to an abnormality in the brain's development, meaning that the brain functions differently. Symptoms are not always necessarily very clear within the first year, but may grow more pronounced over time. Various brain operations will not give a person autism, but if the brain is extra vulnerable, different events may occur that could prevent your son's development to not be as good as it otherwise could be. You write that he has been diagnosed with pragmatic language disorder, but we do not have any information about the psychological evaluation. Your description of him indicates that he may have difficulties with social interaction, and based on the information you have provided here I see no impediment to performing a neuropsychiatric evaluation on the basis of suspected autism. In fact, we even recommend it as there is evidence to support that autism is more common among people with language disorders.
Your question about treatment of autism may actually require a long and comprehensive answer, but we will try to give a short and clear one! Autism is an enduring disorder, with many different aspects as to treatment, all depending on the individual child's specific difficulties. The most important thing is to identify these difficulties and give information and guidance to the people around the person, and to thus create a predictable environment. There is no medication for autism, although some partial symptoms can be treated medically. Early intervention measures yield better effects.

MAGNUS PÅHLMAN & GILL NILSSON


QUESTION 4

QUESTION:
I have questions regarding the diagnoses ODD and ADHD, because I think my 6-year-old boy might have both. I've tried Googling it but unfortunately there doesn't seem to be very many books or courses on ODD! Haven't had any diagnosis confirmed yet but I feel I recognise some of the symptoms of ODD.

ANSWER:
Hi, thank you for your e-mail!
ODD is an acronym for "oppositional defiant disorder", and the name itself aptly covers the primary problem that the disorder presents. You can read more about oppositional defiant disorders by checking the following link:
http://gillbergcentre.gu.se/english/research/diagnoses--methods-and-ongoing-studies-at-gnc/oppositional-defiant-disorder

ADHD stands for attention deficit hyperactivity disorder and is a psychiatric diagnosis involving problems with concentration and/or hyperactivity (motor unrest) and impulsiveness. You can read more about ADHD at the GNC website by checking the following link:
http://gillbergcentre.gu.se/english/research/diagnoses--methods-and-ongoing-studies-at-gnc/adhd,-odd-&-conduct+disorder
There you will also find a short video with Professor Christopher Gillberg, talking about how ADHD manifests itself.

ELISABET WENTZ


 

We will reply to more of your questions next month!

Regards from the GNC researchers.


 

Page Manager: Anna Spyrou|Last update: 5/2/2017
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