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MARCH 2017

QUESTION 1

QUESTION:
Hi!
My son has autism and mental retardation. Lately he has been worrying a lot and acting out at school, although not at home or anywhere else. A school physician (who has never met my son) joined a meeting I had with the school’s headmaster and special educator and, based on their descriptions of my son, recommended that we give him epilepsy medication. This is in spite of the fact that my son does not have epilepsy. Therefore I am wondering whether there is any research on this, and whether it is common practice to give epilepsy medication to children with autism without epilepsy?

ANSWER:
Hi!
Since I do not have the details of the case, my answer will be very broad/general.
Many of the medications given to children with autism and mental retardation also have other applications. It is for example quite common to prescribe medications also used for psychosis and depression in adults. At lower dosages this has been found to be effective in treating behavioural disorders and anxiety in children with mental retardation. Some medications also used for epilepsy can be used in this manner as well, but in such cases not necessarily because one actually suspects that the person in question has epilepsy, but rather to help counteract behavioural disorders. It is not so uncommon for children with autism to be given medications on account of behavioural disorders or anxiety, and these may be quite helpful, but epilepsy medications specifically are not usually the first choice in such cases. There are some studies regarding the use of epilepsy medication, but a bit too few and small in scope for one to be sure what one should recommend. In practice one might end up trying it as there can be large individual differences among different children.
Another common application of epilepsy medication can be to combat nocturnal epilepsy-like brainwaves, which may cause poor sleep and behavioural disorders during the day, even if the child does not exhibit any apparent epileptic symptoms with seizures during daytime. This can thus sometimes also be treated with epilepsy medication, leading to better sleep and better daytime function. In such cases one would usually prefer getting an EEG (electroencephalography) recording of the child when sleeping, if this is possible to achieve when considering the specifics surrounding the child in question. This situation may also allow for a pragmatic approach, where one might try it even if no EEG has been recorded.
Regardless of how it is used, it is of course critical for the doctor who orders a certain medication to also meet with the child and follow up on how treatment is progressing.

MAJ-BRITT POSSERUD


QUESTION 2

QUESTION:
I’m reading articles in newspapers and professional magazines about the connection between anorexia and autism. A thought popped into my head: isn’t it the case that sensitivity to lip-smacking sounds and consistencies/textures is something that one isn’t always born with, but which can sometimes occur as a side effect of PTSD? And if so, might this perhaps correspond with how the body feels after anorexia?
I’d like to better understand this concept of different kinds of damage occurring after traumatic events, and whether individuals should be approached differently depending on if they have autistic traits as a result of something congenital, or because of sensitivity after a crisis/depression/traumatic experience.
I don’t know if there are any reading materials on how one should view level of function/disorder after trauma compared to “congenital” cases, e.g. if one should diagnose someone with ADHD or ASD if it may actually be PTSD? How should one consider one’s right to support and services and so forth if one is in the same situation as a person with congenital ASD, but acquired these difficulties due to anorexia or PTSD? This aspect could prove important for children as well as adolescents and parents working very hard to help a sensitive child in their everyday lives.

ANSWER:
Hi and thank you for your e-mail!
Posttraumatic stress disorder (PTSD) can of course occur concurrently with ADHD and autism. It is crucial to obtain a thorough medical history of the person’s early development and development throughout their childhood years, in order to find out whether this was when their symptoms first began to manifest. In cases of autism, onset of symptoms should be very early, and many symptoms are usually present at around one to two years of age. Cases of ADHD should exhibit symptoms before the age of 12, but in many cases, difficulties can be detected even during the person’s preschool years. A person with autism may react less, as strongly, or stronger than other people to trauma. People with ADHD run a tripled risk of developing PTSD (Spencer et al, 2016) compared to the general population. However, one cannot develop autism or ADHD as a secondary condition to PTSD. If one is to treat a person with autism or ADHD for PTSD, it is very important to have a good grasp of the fundamental problems involved.
Sensitivity to lip-smacking sounds and consistencies/textures can occur in cases of autism and may indicate a perception disorder, which is one of the hallmark criteria of autism. People may naturally also have this kind of sensitivity to sounds and consistencies/textures without any concurrent presence of autism.

ELISABET WENTZ


QUESTION 3

QUESTION:
I'm the mother of two boys born in 2005 and 2007.
The boy born in 2005 is diagnosed with ADHD and DCD. We were informed at the birthing centre that the boy born in 2007 had "external hydrocephalus", which we have never needed to treat, only keep under control. At 19 months of age he was diagnosed with "severe mental retardation". When he was five they were going to assess his mental retardation again. Nothing had been done since he was 19 months old. When they had finished their assessment they found that he had "mild mental retardation". They also wanted to examine him for autism. And it turned out that he is within the autism spectrum. They wanted to do away with his mental retardation diagnosis as they felt that it was "so small" anyway. We had to nag our way to getting another examination somewhere else, and there they eventually found that he clearly suffered from mental retardation, beyond any doubt.
At an early age (3-4 years of age) we noticed that his gaze would "vanish" only to eventually return at which point everything would go back to normal again. Sometimes he would be sad. We had him get an EEG and it turned up nothing. This continued and several EEG's were performed.
When he started school he began stuttering. He gets stuck on words, like "if if if if if............" or "when when when..." and then promptly continues to say what he wants said.
We've been in contact with habilitation services since he was referred there as a 2-year-old, but they have in turn sent us to the speech therapy clinic at Sahlgrenska. The 3 times we have been there he has not stuttered at all and then they have been unable to provide any help. This is terribly frustrating! He gets angry and people in his everyday environment have no patience waiting for him whenever he takes time to say what he wants to say. Of course, he does talk all the time. He's only quiet when he sleeps at night (we assume).
When he had gone through his first semester at school, school personnel reacted to him being very "absent", so an additional EG was performed, which this time showed him to have epilepsy. Medication was introduced immediately. As I said, at age 7, when he started school, he started to stutter, getting stuck on words.
Obviously we here at home are no doctors, but I have experience working with disabilities since 1998, so I have met children and adolescents with neurological disorders of varying degrees. But to me, our son is a happy miracle and one big question mark...
WHY does he stutter?
Does he really suffer from mental retardation? Will they be able to remove the diagnosis in order to give him a different one like "Asperger's" instead?? Becauses sometimes even I as a parent can get the sense that he fluctuates between different states. One minute he is like a "professor" and the next he is a little 3-year-old who does not know what to do.
My guess would be that his epileptic activity is interfering with his language centres and this causes his stuttering to be worse on certain days. He doesn't have any convulsions, only these absent episodes. But with medication the absence episodes are not very frequent anymore, which is nice. The stuttering, however, is constant.
Or is it his mental retardation/autism that is causing this interference?

ANSWER:
Hi!
Language difficulties are common in both autism and epilepsy (EP), they can then be due to difficulties in finding the right words and terms - what speech therapists call word mobilisation difficulties - or other language difficulties such as lacking vocabulary and/or difficulties in language comprehension.
Without having met and assessed your son personally, it is difficult to determine whether this is primarily a question of stuttering or word mobilisation difficulties - it could also be both, for that matter. Studies have shown that certain language difficulties such as word mobilisation may increase in both scope and severity in cases of epileptic activity, meaning that the person's linguistic ability may fluctuate, as you yourself identified. It also depends on where in the brain that the epileptic activity is primarily taking place, this influences which symptoms the child may exhibit. Epileptic activity in linguistically important areas of the brain can have major effects on speech and language.
The stuttering is usually described as speech motor difficulties, a different condition/separate diagnosis, which is distinguished from the person's language skills such as vocabulary, word mobilisation and language comprehension... The fundamental cause of stuttering is still uncertain, although there is a consensus that stuttering has a neurobiological cause. The brain and its function are crucial to motor speech planning, the idea is that in stuttering cases, the brain's speech control is unstable, creating a tendency for breaks/interruptions in the person's speech. Most experts agree that there are additional factors in play with regard to the emergence and development of stuttering. How the stuttering develops may be influenced by psychological and social factors, for example the reactions of both the stuttering person and those around him/her. Stuttering may also be a manifestation of tics.
Intellectual disability and stuttering can also co-occur as diagnoses, but how they affect one another has not yet been well-documented. Among all adults, around 1% stutter, in a study examining prevalence of stuttering among people with intellectual disability, the numbers indicate that around 6% stutter.
There is little material published on the combination of stuttering and autism, but there are some studies that have looked into this. What they conclude is that people can have both of these diagnoses simultaneously. There was one study focusing on treatment of stuttering and social language difficulties, their results indicated that it had a positive effect. However, more studies are needed in this area.
You were also wondering whether the epilepsy and the stuttering might be connected? Stuttering as a condition is variable, it may vary on a daily basis, and across different situations. The stuttering may also fluctuate due to epileptic activity, but the stuttering varies even without any presence of epilepsy, and there are often no clear patterns to be found. There are some studies on epilepsy and concurrent stuttering, and there seems to be a certain connection there. In some patients, one has been able to observe a direct link between stuttering and epileptic activity.
Whether your son has an intellectual disability or not is difficult to say without performing a formal examination. However, recent studies have shown the importance of following up children who have received early diagnoses or exhibited ESSENCE-related difficulties and/or autism when they were (very) small. The children develop, which makes it important to get renewed assessments at certain milestones, like when they start school or enter their teens. This is so that one might be able to make an up-to-date assessment of what kind of support the child/adolescent needs at that given point in time. Children develop and diagnoses may change over time.

Reading tips/references:
http://www.stamning.se/fakta/fakta_om_stamning.html

Scaler-Scott, K., & Sisskin, V. (2007). Disfluency in autism spectrum disorders: Treatment considerations for the clinician. Boston: American Speech-Language-Hearing Association Convention.

Shriberg, L.D., Paul, R., McSweeny, J.L., Klin, A., Cohen, D.J., & Volkmar, F.R. (2001). Speech and prosody characteristics of adolescents and adults with high-functioning autism and Asperger syndrome. Journal of Speech, Language, and Hearing Research, 44, 1097-1115

Lebrun, Y. (1991). Stuttering and epilepsy. Journal of Neurolinguistics, 6, 433-444.

Stansfield, J. (1990). Prevalence of stuttering and cluttering in adults with mental handicaps. Journal of Intellectual Disability Research, 34,  287-307.

Research on children with autism who have been followed over time includes for example: Autism spectrum disorders - first indicators and school age outcome) Martina Barnevik Olsson (2016).

EMILIA CARLSSON


We will reply to more of your questions next month!

Regards from the GNC researchers.


 

Page Manager: Anna Spyrou|Last update: 3/28/2017
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