Dear ones, we recently had an article here from Luise, whose son has tics and possibly also Tourette’s syndrome. Caro then got in touch with us, whose son has Asperger’s autism and who also had tics, although they were a side effect of ADHD medication. We wanted to find out more and asked Caro for an interview.</p
Dear Caro, your son (12) is Asperger autistic. Can you remember the first time you realised that something was different?
I have to expand a little on this… Our son was actually an extremely low-maintenance baby. He was our first child and I always jokingly said that he was a „beginner’s baby“. He slept well and also slept through the night quite early on. He liked to lie in the pram or cradle and observe his surroundings – he was a quiet but happy child who was easy to look after. Looking back (and in comparison to his sister), this could perhaps be seen as the first conspicuous behaviour. But at the time, we were simply delighted with his uncomplicated nature.
We only started to worry when the typical defiant phase lasted an unusually long time. The tantrums were intense and always happened when something didn’t go „according to his plan“. He had this plan in his head, but we weren’t aware of it.
Can you describe this in more detail?
Yes, of course. An example: the doorbell rang, there was a parcel outside the door and I went to pick it up. But because he wanted to bring it in, he burst into tears or got really angry. I could only resolve the situation by repeating it. So I put the parcel outside the door again, rang the bell myself and then let him bring it in. Only then was he able to calm down.
At first I thought that this was a typical defiant phase. Just like a 3-year-old child who wants the apple cut and then cries because the apple has been cut. However, the phenomenon lasted longer than average for him and occurred again and again in different constellations.
In addition, there was also a behaviour that outsiders would describe as „mucking about“ (or worse, „bucking“) and which lasted until the end of primary school. In this case, he would huddle up very small and cover his ears in situations that overwhelmed him (unfortunately we only realised this much later!). If possible, he would hide under a table or in a corner. He was then barely responsive and it took a lot of patience to get him out again.
How did he behave at the daycare centre?
Since the daycare centre had an open concept with lots of freedom, he was inconspicuous. He could spend hours doing what he enjoyed (e.g. building things or being outside) and orientated himself well within the given framework (breakfast time, lunch break). It was only in the pre-school year that he realised that he had difficulties with tasks that consisted of several steps. Unfamiliar and confusing situations visibly overwhelmed him.
If he didn’t know what was going to happen next, he would block („muckeln“) and then often nothing worked at all. We started the diagnostics in the spring before he started school. As there were no major abnormalities (neither cognitive nor in social behaviour) at the nursery and also at the school entrance examination, he was enrolled at the local primary school as normal. The first call from the teacher then came after three weeks ….
What kind of child is your son? Tell us a bit more about him.
Our son is generally a quiet character and a rather introverted type. He is very interested in technology and started using his mobile phone and laptop at an early age. He writes and understands English without any problems. In other words, what many people now call a „nerd“, which makes him a little less conspicuous among his peers. However, he has no special interests and has never lined things up or had problems looking anyone in the eye, which many people equate with autism.
At school, he still had massive problems with the structures. It is often said that structures are very important for autistic people. But the structures were not logical for him. The constant „having to do it“, simply because that’s what you do, was (and still is) difficult at times. The room changes, unexpected substitute teachers. All of this repeatedly led to problems and a lack of understanding on the part of the teachers.</p
A classic example: He is still working on a maths problem, but the lesson is over. He is now expected to put the task away and then move on to the next subject. But he can’t do that because he is still working on the maths task in his head. Perhaps a particularly sympathetic teacher comes to him, sees the problem and kindly offers to finish the previous task.
But then he can no longer do that, because according to the timetable it is now German and he may have already been asked to finish the maths task. An inner conflict arises that he can’t resolve himself. A so-called shutdown occurs. His system shuts down and he is trapped in a blockade, often in the form of „making himself small“ and hiding away, as described above, until grade 4.
The important thing for our son is to be as predictable and prepared as possible. If he has this and nothing comes up, then it just works. The fitting of braces, for example. Or starting secondary school. But also the daily bus journeys (including changing buses) or going to learning therapy straight after school. If he knows what he has to do, he does it. But has no plan B.
Your son was also given Ritalin. Why and what effects did this ADHD medication have on him?
Because he has problems following multi-step instructions, he was also tested for ADD/ADHD. The result wasn’t really conclusive, so the medication was more of a trial. We started with Ritalin in the „classic“ delayed-release form, which worked well for around 3 months and then he started to develop tics. At first he just blinked a lot, then he squinted his eyes, then he cleared his throat and snorted. But everything was still somehow in moderation.
The dose of Ritalin was increased and the tics became more obvious. He suddenly pulled his shoulder up and jerked his head to the left. As this also really restricted his eating, I quickly realised that this couldn’t go on. I initially suspected Tourette’s syndrome, but during my internet research I came across evidence that these tics can be a common side effect of Ritalin. I called the psychiatrist and was told succinctly that I would have to decide for myself what was more important to me: concentration with tics or no concentration. We stopped the medication, the tics gradually disappeared and we also changed psychiatrists.
You then tried other medications…
About a year later and with the new psychiatrist, we tested other medications in different combinations. The range here is much wider than outsiders would expect. But there is no „one“ medication and you have to try out a few things over a longer period of time. So there is never the quick fix that many would wish for.
Luckily, the tics have not returned as a result of the new medication. But what all ADHD medication unfortunately had in common: Concentration got better, but the autistic problems got worse. My son became unfriendly, was incredibly sensitive, the smallest changes completely threw him off his stride. Although he was able to work more quickly at school with medication and was perhaps able to follow the lessons better overall, he also developed (long-lasting) blockages much more quickly. In the end, my son decided that he had to manage without medication.</p
I’m sure it was all quite stressful for you too. How did you deal with it as a mum?
I quickly realised that I had to become an expert for my child. I’m sure all parents whose children have some form of disability and/or special needs can confirm this. I did a lot of research into school (support needs, support options, compensation for disadvantages, school support, etc.) as well as the diagnosis and medication. What works? What doesn’t work? What else can be done? I read books and attended lectures.
Until I started school, everything was more or less normal and suddenly I was sitting in monthly meetings with teachers, the after-school care centre and the school management. At the beginning, I agreed to everything because I simply thought the teachers and educators knew best what to do. Before I knew it, my child had „social-emotional“ support needs and the application for school support was submitted. I didn’t even have time to think about the fact that it could also have negative consequences for him.
In any case, the situation was incredibly stressful. My husband is far less diplomatic than I am, so I preferred to have the conversations with the school. But after every conversation, which was all about deficits and problems, I naturally felt bad and had a lot of self-doubt. Are we going down the right path? The uncertainty really wore me down!
How is your son doing at the moment?
We had one last trial with a different medication at the beginning of year 5, but with the same result in terms of sensitivity. My son then clearly said that he didn’t want any more trials.
Blockages still occur and there are always teachers who think they can cope without support (he has a school coach and one teacher is also trained in SE). But we also have to accept that. I don’t think he has ever seen any problems himself. He doesn’t deal with being autistic and I think that’s why he doesn’t feel any limitations himself.
You also told us that the change to secondary school had a lot of positive effects.
Why was that the case?
Primary school was characterised by rejection, a lack of understanding and a lack of trust from the teachers. He clearly sensed that (some) teachers didn’t like him and were perhaps overwhelmed by him. Autistic people are not as emotionless as they are always told. They feel things more and more often that others don’t even realise. And they find it difficult to distinguish between their own emotions and those of others. If the teacher is stressed, he was stressed. Some autistic people then make a conscious decision not to feel anything at all …
In the end, he opted for a grammar school on the other side of town that no child from his old school had gone to, so it was a completely new start. The school is simply very open in every respect when it comes to neurodivergence. The teachers are open to him, recognise his strengths and are able to assess him well.
In the end, the primary school refused to take him on excursions without extra supervision, but that was no problem here. We tried it out and it worked. The highlight was the school trip in June. A 3rd teacher travelled along especially for him. One week, relatively far away (5 hours) and without a mobile phone. His medium for regulation. And it just worked. The teachers were thrilled to see him like this, without the stress of school.
Since then, contact with his classmates has also improved, he now has 2-3 friends with whom he meets up, spends the breaks (in primary school he only sat inside!) and spends hours playing games + talking on the phone in the afternoons. He has visibly blossomed as a result and has had a surprisingly good start to the new school year. He is currently enjoying the holidays and is still in contact with his classmates, which makes us very happy.
You have also had some very challenging years. What have you learnt from these experiences?
Unfortunately, we had the sad realisation that you can’t and shouldn’t rely on any systems and have to question everything. I also learnt that you have more strength than you think. And I celebrate every step forward and every normality, simply because it can’t be taken for granted. When I recently received an email from the class teacher to me and the parents of the person sitting next to me that they were chatting too much in class, I just had to grin…
It has made us stronger as a family overall. I reflect on my behaviour much more than I used to and I’ve developed much finer antennae for when something isn’t right.
Is there anything else that is totally important to you on the subject?
No two autistic people are the same. I have read so many articles about autism, including on your blog, and always hoped that I would find my child in them and perhaps the ultimate solution. But in fact this was only possible in fragments, because autism is very multifaceted. I would like people to be more aware of this and for the image of autism to be less characterised by the usual clichés.
