My father has a speech impediment. It started several years ago, almost suddenly. He was always fluent in English and German, but suddenly he could no longer formulate logical sentences. He also made many illogical mistakes in Dutch. He could not come up with the right words and kept faltering until he remembered the word again, someone complemented him or he gave up. Or he used words that were not quite or not at all correct. Sentences were broken up and stuck back together haphazardly, it seemed. And soon my social and chatty father became quieter and quieter. We were faced with a conundrum. And it hurt us.
The Label dementia
My father was calm about it. Of course, in the beginning he was very worried. He had sleepless nights and even experienced two violent panic attacks. But, he remained level-headed in his thinking. As long as I am otherwise functioning and can do my thing, I am fine, he seemed to think. For my mother, it was perhaps even more intense. The feeling increasingly crept up on her that it might be dementia, her biggest fear. With a background in elderly care and as a carer for her two parents with dementia, she knew exactly what a debilitating disease this was. And as a ‘partner of’, she knew this was going to be a very difficult end for her. Fortunately, all of us kept our cool. If nothing was proven yet, we believed in a happy ending.
And so my father entered into investigations. Unfortunately, there he was immediately forced to be pigeonholed as ‘demented’, with no evidence. He had to go through tests like, “what is this?” while the examiner held a figurine of a dog in front of him. My father then replied, as calm as he is; ‘that’s a labrador’. He also underwent brain scans, but fortunately no tumour or any other abnormality could be seen in them. And so he was labelled “demented”. Of course, we didn’t leave it at that. Then we would investigate ourselves, we thought as a family.
An Autistic Burn-Out
And then there came our answer. Autism burnout. Never before had we dealt with autism. Never before had it been demonstrated in our family. And never before had we heard of the existence of ‘autism burnout’. But it is a thing and now my father’s. For how much we recognised him in it. Not only his current speech impediment, but also his character. Always noticing exactly what is going on around him. The smallest details on the street catch his eye. Wanting things a certain way. Even his strong nose was explained by it. We already had the idea that the situation just before my father’s speech impediment, having to move to another office four times in quick succession, a change of manager and colleagues, route to work and work activities, an overload of work, but also on a private level, e.g. the death of his father, were reasons.
Autism burnout is often caused by a big, sudden change and/or too much stress. Added to this was the fact that my father never properly indicated when he did not like or enjoy something. Rather, he stayed quiet or tried another option. Everyone just sees him as a good guy who is fine with everything. But now we know that he did store everything up, as if he were some kind of bucket that eventually overflowed. Never before has my father been diagnosed for this. We have simply always thought this was just my father. But now that it has become too much, we are blessed with this insight. Because now we can deal with it. Now we can understand and help each other, and he himself.
Another shocking insight
With that insight, came another shocking one. Because suddenly I realised that I was also born with autism. Suddenly that explained so many ambiguities, strange actions and questions I have been or still am dealing with. Why do certain sounds always make me aggressive? Can I sometimes hold on so tightly to how something happens or stands? Did I never feel understood when I was young? Do I like to isolate myself and prefer dealing with animals to people? Do I always feel like I have to pay attention to what my body language is and what I say? Well, I don’t recognise myself in all the symptoms, but then the spectrum is vast.
Suddenly it also explained why I have been struggling with a recurring ‘dream feeling’, as I used to call it, since childhood. A few years back, I found the official term for this: DPDR (depersonalisation and derealisation disorder). Now that too is explained by autism. I did not recognise the causes for DPDR: severe trauma such as abuse or too much or wrong drug and/or alcohol use. Both I have never experienced, thankfully. And what did I read? When there are too many stimuli, many people with autism find themselves in a kind of blunted world, to (be able to) suppress the stimuli. And I do recognise myself in that. How many times have I walked down an overly busy corridor at school, after which I suddenly found myself in that dreamlike state?
Living with autism
It’s weird. To suddenly realise at 26 that all those difficult periods, all those traits you know are weird, are not just part of your character. But that you belong to a spectrum. It’s nice, because now I understand. Now the penny is dropping. But it’s still double. Because now you start doubting everything about yourself. Is that part of autism? Or is that me?
For the record, I have a very normal and good life. Autism comes in many varieties, including impairing ones. Therefore, what I experience is nothing compared to what some go through. Still, I want to put my foot down. And who knows, maybe more adults will recognise themselves in this and it can help them that way. Because the nice thing is to know that you can learn to deal with autism. And already I experience that realising that some of my traits are ‘autistic’ makes me calmer. Now I understand that it’s not some weird torment I’m inflicting on myself, but something I genuinely can’t do anything about. What I can do something about is knowing which traits are ‘autistic’ and dealing with them with help. And that goes a lot better if you know what is happening and what tools you have.
Disclaimer
I am ABSOLUTELY NOT some kind of expert, I just write from my own experiences and thoughts. You hopefully understand that everything I write in this post is very personal and sensitive. Not only for me, but also for my family and perhaps also for persons who recognise themselves with autism and/or DPDR. I have chosen to share this story myself because I hope it might help me and others. So I ask of anyone reading this to be respectful of the information in this post and your possible reaction to it, to recognise that it was written by a person who likes to write (and so may sometimes word things a little differently), and that it was written by a person who is still discovering herself. Thank you!
Sources
Depersonalization-derealization disorder (Engels)
Autistic burnout blog (Nederlands)
Autistic burnout blog (Engels)
I would love to hear your experiences and thoughts on autism, or any of the other topics I mentioned (DPDR, autistic burn-out, aphasia..). If anyone reading this (thanks for that, I love having you here!) recognises themselves in what I write, but is still totally unfamiliar with this ‘path’, you may also contact me, should you feel comfortable. I am happy to talk about it together!
Love, Max.
