Being tested for ASD as an adult

[Loopy Lou]

I wasn't sure where to put this, since it's not really epilepsy related, so if it needs to be moved please feel free!

Recently i saw a mental health assessor. It takes a long time here to get a referral, i think they sent mine in october or november last year. Anyway, we talked for a bit about various issues that were affecting me (health, finances, my benefits, bereavements, looking for work etc) and then she asked me was anyone in my family on the autism spectrum. I told her about how my brother and nephew both had aspergers, and my little brother was looking into getting a referral to be tested also, and that many people on my mums side of the family had varying degrees of autism, but all of them male, apart from one suspected female cousin.

She wants me to get tested. Now, i'm 33. I heard that they don't do adult testing anymore, and said to her if you look hard enough that everyone will have some signs of it somewhere. She asked a lot about my early childhood, and said that while she'd been talking to me, i'd shown a lot of signs, and given the family history she recommends i should look into it but it was my choice.

At the time we were younger, i had a lot of problems, but my big brother was the main one. He has aspergers but wasn't diagnosed until he was 15. He had to have a lot of CBT and testing, and i think he kind of took up a lot of my parents focus because he could become very aggressive. The assessor said that men tend to present as more aggressive whereas women and girls are better at masking things to act "normal", and will hide away from the world, and also seem to be diagnosed much later in life. Some of the things she was describing was me down to a T.

This was kind of a curveball to me, i didn't really see that coming even though everything she said made sense. I am very intelligent education wise, but not when it comes to people, or facial recognition, or dealing with social stuff.

Does anyone have any experience with being tested for/diagnosed with autism spectrum disorder as an adult? I haven't decided whether or not to go for the testing yet, i have a few weeks to think it over until the woman comes back again for another appointment in July.

I don't know if i want to know.

 

[Nakamova]

Would a positive diagnosis make a difference? -- i.e., would there be therapy you would receive or things you would change? If not, then it might not be worth the testing, especially since you're already familiar with ASD...

 

[Nakamova]

If you haven't seen it already, you might vbe interested in this article: https://www.nature.com/articles/pr2009132
It discusses what is currently known -- and not known -- about connections between ASD and epilepsy.

 

[Loopy Lou]

I used to work with adults with learning disabilities and mental health issues, at all parts of the spectrum, and have written a paper on the links between genetics, ASD, and epilepsy also.

On one hand i don't want another label. I guess nothing would really change, i'd still be me. But on the other hand, it could help to explain a lot of things i've felt about myself and could help when i'm looking for jobs, or for getting my disability sorted in the meantime so i can afford to live until i can find the right job.

My mum crossed my mind too. Owen (my 8 year old nephew) was only diagnosed on world autism day this year, so a couple of months ago. My little brother was beginning to be tested as a kid but it was put on the back burner, possibly because of my big brothers issues. I'm worried how she'd feel if she had all 3 of her children and her grandchild on the spectrum, even though realistically she loves us all for who we are.

I've got a couple of weeks to think about it until i see the woman again, and then i'll decide. It will probably take months to organise anyway.

You know what? It might have taken over half a year for an urgent referral to the mental health team, but i think it was worth it. They're multi-disciplinary, so not only are they going to help me with depression and anxiety, but also with this testing, getting stuff in my flat to help make it safer, and financial advice as well as counselling/CBT, so i'm glad i finally asked for the referral. Hopefully soon i'll see a glimmer of light at the end of the tunnel and it won't be a train.

Sorry, rambling again

 

[Porkette]

Hi Loopy Lou,

I've worked with many people that are autistic over the yrs. because I work in special education. I do know that often when a person is autistic that can sometimes lead to seizures on down the road.
What you may want to do is have a DNA test done so they can see the chromosomes in your body along with your family and if some of them don't match up correctly this could be what the problem is. I wish you the best of luck and May God Bless You!

Sue

 

[Loopy Lou]

Hi Loopy Lou,


What you may want to do is have a DNA test done so they can see the chromosomes in your body along with your family and if some of them don't match up correctly this could be what the problem is.

Sue

I actually asked at uni (half joking) if we were allowed to do something similar to this, but nope because it would be a nightmare convincing the ethics board lol.

They wouldn't do DNA tests for that here unless they were paid for privately, as it's not deemed medically necessary or relevant. It certainly would be interesting to look into though.

I think i maybe will go for the ASD testing, just because if i don't now, it will always bug me. I'm expecting it to take years to carry out, so it could be a looonnnggggg time til i find out.

 

[Andrew]

Diagonsed as an Adult

Hi Loopy Lou,

You may be interested in reading the following posts started by Blonde Angle entitled "Autism & Epilepsy & General Epilepsy Experiences":

https://www.coping-with-epilepsy.com/forums/f42/autism-epilepsy-general-epilepsy-experiences-23950/

My posts begin on page 6 (see the above link), I was diagnosed with Dyslexia at the age of 34 and Asperger's Syndrome aged 40. I had my first seizure when I was two weeks old.

You can find my story regarding B6 here: https://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/

The "Atypical form of Pyridoxine (vitamin B6) Dependent Epilepsy." which I refer to in my story has now been confirmed as PNPO Deficiency via a genetic test.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

 

[Loopy Lou]

Well the last time the mental health nurse called round a few weeks ago she had me do a paper test where you answer a ton of questions, and apparently i scored enough that they want to do further investigations. She was round again earlier today and said that i'm 38th in the waiting list, so it will probably be a few months. I said that's ok as i'm still not sure i want to go ahead with it.

I probably will because curiosity will take over. And they said i could (and it's recommended to) take my mum in with me, because she'll remember stuff from when i was a child that maybe i don't, although most i've been told as anecdotes from over the years.

Least i know now i have a few months to ponder it over.

Thanks for your reply Andrew, i must have missed it before, but i'll check it out now, thanks!

 

[Loopy Lou]

A bit of an update, i went on tues for an appointment. That was my screening and to be honest i didn't expect it to be any further, but they want to do a full assessment which will probably be in january/february time. They need either a parent or an elder sibling present so they can say what i was like from birth up until just past school age (so upto 5ish). Since my eldest sibling is under a year older than me, he wouldn't really be a reliable source so i guess it'll be my mum. Still not sure how i feel about it but i'll probably try to forget about it until the appointment comes up. I've got like a million other things to deal with at the moment, and i don't think this is all that important

 

[Nakamova]

got like a million other things to deal with at the moment, and i don't think this is all that important

I think you've got the right perspective on it. Maybe you and you mum can make a day of it and get a nice meal afterwards.

 

[Loopy Lou]

As an update, i have a date for my final assessment, it'll be on the 27th february. Still not sure how i feel about the whole thing, but it'll be my mum they're asking all the questions to this time, not me. They want to find out what i was like before the age of 5. I was very late to walk and talk but started pre-school at 2.5 years and could read whole books by the time i started school at 4. But i was a holy terror when it came to tantrums. Gah what will be will be. And i think lunch out sounds like a great idea

 

[CQ:)]

Good luck

 

[Loopy Lou]

Well i had my assessment today and they said i was definitely on the spectrum and though they tend not to put individual labels anymore, that i have what they would have called Aspergers syndrome, the same as my brother and nephew. They've given me a folder with information in it, but i really don't know what to do with this information. It doesn't change who i am or who i've always been, but certainly answers a lot of worries i had about myself, and i wonder if people would look at me or treat me differently if they knew.

I did a lot of research in ASD/Epilepsy links for a paper when i was in university but then never actually used it, so i might go back through my research with a fresh set of eyes now.

My mum said that she felt a little guilty because the boys took up so much of her time when we were younger whereas i could be left on my own to get on with things, so it hadn't occurred to her, but it's not her fault, i'm very different to the boys after all.

 

[Nakamova]

I'm glad you're reassured by the results, rather than thrown by them. It's cool that you did the research in uni.
It feels like Asperger's doesn't carry as much stigma as epilepsy maybe? Though I could be living in a bubble.

 

[Loopy Lou]

I don't know, i feel like people are more likely to question your intelligence with ASD than with epilepsy, and i'm proud that i'm smart - its the one thing i have going for me lol. Aspergers is more what they used to call high functioning autism, but totally sucking at the social side of things. I should get the report off them in a few weeks but i hope it doesn't take too long because i'll need to it to send off for my disability appeal.

 

[Nakamova]

All the folks I know with Asperger's are smarter and cooler than everyone else, so I guess there's some bias in my data set.

 

[Loopy Lou]

Well it certainly explains a lot, like my inability to recognise faces and my excellent memory for numbers and random information. Unfortunately due to the epilepsy my short term memory is pretty much shot now which made exams at uni so much harder considering i'd never ever studied for one before. I could just remember all the information and repeat it. I'm the only female in my family to ever be diagnosed but i know of at least one more who is definitely like me. All the rest have been boys.

I also have an excuse for my hermitting now i suppose (although at the moment my current excuse is the endless storms! We just want to see the SUN!)

My mum and my brothers and one friend are all who know about it, and i think that's probably the only people who need to know. Now that i've kind of mulled it over, it explains a lot, about how kids used to say i was weird, or that i talked funny, certain habits and things that happened a lot when i was a kid that i've kind of learned to control a little now. It just makes me feel more... validated i guess. Like it's not my fault i'm the weird one.

 

[Nakamova]

kids can be so cruel. But when you get older you realize that everyone's insecure about something.

 

[HumbleDeer]

I was diagnosed as a late teen, actually upon my own request for testing. I related a lot to the social struggles people mentioned with Aspergers (back when the DSM-IV was still in use) and I just couldn't help but ask if it might've been the reason I felt so singled out everywhere I was.

Girls/women with Aspergers often have less noticable symptoms. We are very good at playing mask games and taking behaviours from other people.

 

[Loopy Lou]

Girls/women with Aspergers often have less noticable symptoms. We are very good at playing mask games and taking behaviours from other people.

That's exactly what i was told too! Thats probably why social interaction can be so exhausting and girls tend to hide away/hermit more. And i can kind of switch off my feelings until i'm alone and can process them. People must have thought i was really cold at my grannys funeral because i didn't shed a tear despite how close we were. I had a total meltdown/breakdown once i got home and was on my own though. I've also learned to control my temper too, most would think i'm pretty easy going as an adult considering the explosive tantrums i had as a child and teenager.

As someone who found out pretty late, did it change anything in your life to get the diagnosis? Did people treat you differently, or did you feel any different in yourself?