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KMCIURA
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06 Jan 2022, 7:26 pm

Hi folks!

My name is Kamil and I live in Poland. Sorry if my English is not perfect, it's my second language and due to exposure to both American and British types I tend to mix the two together!

I'm currently 34 years old and was diagnosed with Asperger's in December of 2020, so it is still pretty fresh. Two months later I was also diagnosed with lateral temporal lobe epilepsy (after six years of bouncing between doctors who were telling me that my focal seizures were migraine auras) and found out that there's a significant level of correlation between the two.

Surprising news to me, seeing that my sister, mom and grandmother had epilepsy with typical tonic-clonic seizures as children and none of them expressed any signs of being on the spectrum, ever. Mom and sister were successfully cured from their condition before entering adulthood, seeing that there's a level of neuroplasticity in brain of children and anticonvulsant drugs have stopped the progression of it. I was a little bit puzzled about the whole situation: first of all, my epilepsy developed much later and was of a different kind than one which "runs in my family". All data I could find about the link between autism spectrum and this disease was about cases in which it has surfaced in early childhood.

Now I wonder, is any of you in similar situation (being on the spectrum, epilepsy, late development of the latter)?

Second thing, I was undergoing psychological examinations as a kid and even thought I express so much signs of being on the spectrum, all these people came up with was dyslexia. Which turned out to be false, by the way. I now work as a copywriter and read a lot faster than most people. No problem with expressing my thoughts in writing at all.

But I have other typical traits: poor handwriting (surprisingly, it does not affect my ability to draw), mixed laterality, some sensory integration issues, impaired non-verbal behaviours and difficulties of reading and understanding them in others, being awkward in social interactions, verbosity, narrow areas of interests and repetitive behaviours: as a child I couldn't sleep if I couldn't get all corners of my pillows to be as close to perfect 90 degrees as possible, for example. And yes, those bother me to this day, but I've learned to overcome this by thinking about something else :D. The list goes on and on! I haven't wrote all of it.

Worst of all, I was a sh***y teenager - had like zero interests in how other people feel and was (most of the time) cruel to them. I even treated people like test subjects, "probing" them by acting in a certain way, saying certain things, trying to predict the outcome and seeing how they'll react. I was genuinely interested in how people "work", but was not interested in them as conscious and feeling human beings. Acquiring the level of empathy I am now at has been a long process of rationalising many things. Even now I must quite often hesitate myself from going into "robot mode" when I am interacting with people I don't really like.

Sometimes I wonder why nobody has noticed my Asperger's before, event though it is that obvious. I even worked with people who graduated in psychology, my close cousin did too! I guess they were simply bad at their job and that's why they aren't working in this field haha. Jokes aside - getting diagnosis was a relief.

This was a missing puzzle that helped me understand who I am and why I feel so out of place. It also helped me to take into account that most people do not function like me. We, people with Asperger's, tend to "mask" ourselves to pass as neurotypical. But these folks never had a need to step in our shoes and thus, have much more trouble understanding us than we have understanding them (even though it is still difficult sometimes). Therefore, I believe that while spreading awareness about neurodiversity is necessary, the burden of finding a "common interface" is more ours than theirs.

After learning about my AS, I came to a conclusion that my dad have it too. It is obvious - but he is 60, stubborn and won't go to diagnosis. But yeah, it would be pointless for him at this stage. He is happy with the life he is living.

Furthermore, I am married and have two daughters, aged 4 and 1. I love them and they are best of what happened to me, but being honest - If I would knew about my epilepsy and that I can pass it onto offspring, I would never go for having biological children. Using a service of sperm bank or adoption would be a more moral and logical choice.

My older daughter is also most likely on the spectrum, seeing that she's expressing so many traits of AS. We have started to work with psychologist and got her into sensory integration therapy, but over here they do not want to state an official diagnosis before age of 5, who knows why. Younger one is not showing anything as of now and actually, we were in shock to see just how different her development is. For example, she started smiling and smiling back when she was about 8 weeks. First one was not doing that until she was like 6 months.

So there you have it: I am an adult with AS, a father of a kid with AS, a kid of a father with (most likely) AS myself. And add TLE on top of it. Combo!

Feel free to ask any questions!



Doberdoofus
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06 Jan 2022, 7:50 pm

Welcome to Wrong Planet KMCIURA :D


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autisticelders
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07 Jan 2022, 7:04 am

welcome, I was late diagnosed with autism (68) no seizures though. I live in the USA. Glad you are with us. ( I would never have guessed English is your second language).


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Double Retired
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07 Jan 2022, 4:58 pm

Welcome to WP! I think you will find some nice people here.

To answer a bit of your post, I am:
-=-- Autism Spectrum Disorder, Level 1 (Mild)I also meet the criteria formerly associated with Asperger's
-=-- Epilepsy no
-=-- Married with no children

I think I am, and have always been, inclined to being kind but not social.

I agree with autisticelders that your English seems quite good. And, like autisticelders, I was also diagnosed rather late in life, age 64.

My diagnosis delighted me. It explained so much. I don't know how much masking I did, though, since doesn't that imply trying to pass as "Normal"? I was always considered to be quirky (or other, sometimes less polite terms) but I think what I was unknowingly trying to do was to cope with the World and the problems I had with it because I was unknowingly an Aspie.


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AnonymousAnonymous
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07 Jan 2022, 9:43 pm

Welcome to Wrong Planet! :)

I was diagnosed with tonic-clonic epilepsy when I was 8 and with AS when I was 13.


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Velorum
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08 Jan 2022, 3:00 am

Welcome!

Nothing wrong with your English in my view.

My formal identification (ICD10 F84.5) was at age 60 - though I self identified many years before that.

No epilepsy diagnosis but my youngest daughter (who is 35) is autistic and was diagnosed with major (tonic/clonic) epilepsy at the age of 4. We agreed to her participating in a clinical trial for an experimental medication regime which entailed high doses or a combination of anticonvulsants. This was successful in that by the age of 10 she had her last tonic/clonic seizure.


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