Published on 12, July, 2020
I haven't been part of this online community for long, and I'm only part-way through the autism diagnosis process at the moment.
What I am finding incredible is how comfortable I feel here, especially as I struggle so much to connect with people in other spheres of life.
As a child I felt like an outsider in my birth family, so much so that I became convinced I was adopted. Eventually I had to acknowledge this was unlikely (my unusual nose is identical to my dad's!).
Being part of this community is like being on one of those TV programmes where people are reunited with long lost siblings. They may have been apart for many years but once they are together they share so much common ground.
My birth family will always be my birth family, but it is wonderful to have found all these new autistic brothers and sisters.
It's quite overwhelming, but in a good way.
Did you feel the same when you joined this online community?
I always felt like I must be a foundling as a kid too, although I look so much like my mum, I am quite sure this is not the case! I agree though, it is so nice to "meet" people whose perspective on life seems less strange ....
One of the great things about diagnosis is that, if you're lucky, your family may want to know more about autism and will finally start to understand why you do some of the things you do, and are the way you are :-)
That was slightly tinged with sadness in my mum's case though, because her father had Asperger's (like me) and many of the things I have explained to her about how I experience the world have made her realise why he did certain things, and why certain things caused him a lot of distress. Sadly, I got my diagnosis after he had passed on, so too late for him to benefit from the understanding she has now. I think she is quite sad about that. Some of the things she judged him for, and maybe complained about, she now realises were probably down to sensory sensitivities causing him a lot of stress for example, she would understand now but at the time thought he was being difficult.
It has been great meeting the folks on here. If you're diagnosed later in life, it's really helpful to be able to ask questions of folks too, and get other people's take on things.
That's so encouranging and helpful, thank you. I was a little concerned about talking to my parents. They are in their 80s and my mum gets quite anxious. My younger sister had a chat with them about providing some information for my assessment and they were fine with it. It is really sad to consider people like your mum's father who may have lived their whole lives without ever knowing why they struggled to cope. I agree about the benefits of being able to ask questions. There's a lot to try and understand.
Well, that's the thing. Although it was quite clear he had Asperger's, that wasn't a diagnosis when he was a young man (Or even a middle aged man). I honestly don't think he ever realised why he was how he was. He just shut himself away with his amateur radio set mostly.
I myself wasn't diagnosed until the grand old age of 46, but apparently it is quite common for women to be overlooked. It was only when my problems ganged up on me in such spectacular style that I thought I was about to have some kind of breakdown, and in true Aspie style I went on an obsessive research kick to try to find out what was going on, that I realised. I googled various things and one day in frustration just put all of the problems into a search engine in a great long line and what should come up but "autism signs in women". I read it and instantly said wow, this is me.I feel only good things about having a diagnosis btw, because it explains everything, including things that were hard as a child/young person.
If your parents are receptive to getting involved in the assessment, I'm sure they will learn more along the way. Mine don't talk about it much, but do obviously think about it as they will do things like suggesting we move to a quiet area in a busy pub, if they see that I am getting stressed out or simply cannot focus with all the noise and movement going on!
You might 'change', if being more comfortable in your own skin because you finally know why you are how you are is 'changing'. I was in such a state by the time I finally got a diagnosis, I reckon my OH saw only positives. The relief of knowing that I was not going crazy, or having some kind of breakdown, was immeasurable, and I think he was mostly happy to see me happier.
I suppose you might 'change' in the sense that you may find you become 'more autistic' in other peoples eyes. Once you know, the need to mask all of the time may become less strong, and you may decide that it's better for you to just be you, than to half kill yourself trying to pretend to be someone you're not, mainly for the benefit of other people.
I wonder the same - perhaps we'd drive completely NT husbands spare, but slightly diverse ones less so ;-) I hope you can get yours to attend your follow ups if you want him to. Mine is actually quite interested by the whole thing, even though I probably bored him to death about it in the run up to my diagnosis (Aspergers became my special interest for quite a while there!)
How wonderful to have an accepting and supportive partner. I asked my husband if he had any concerns about me getting a diagnosis. He's worried that I will 'change' if I am given the ASD label.
He may remembering when I got my hearing loss diagnosis. This became my special interest for a while, and I got very passionate (militant even!) about my rights at work.
I see lots of ASD traits in my husband too, which is probably not surprising. I read somewhere that couples can sometimes be drawn to each other if they are both ASD.
The psychologists doing my ASD assessment recommend 3 follow up sessions once the assessment is complete. I hope my husband will agree to come along with me.
I am lucky I think, mine is very accepting of it and I think just happy that I now have a much better understanding of myself.
He does have some traits / OCD himself mind .... not enough to be indicative on the AQ test, but def some answers were I suspect not pure NT ;-)
Thank you. Both very useful links. My husband is doubtful about me being autistic. This may be because he does not see the 'classic' stereotypical signs. He has seen me in meltdown mode but probably just thought of that as some kind of tantrum. I hope he will watch some short videos or read a couple of articles.
It puts a bit of doubt in my mind when he says he can't see ASD in me. In contrast my sister is firmly convinced that it is the right diagnosis! She said it had occurred to her some time ago and she had discussed it with other family members.
Appreciate the links you sent. I am reading such a lot at the moment it is easy to lose track of useful info!
Hi Sunflower, I wondered if you had found this in your travels:
https://taniaannmarshall.wordpress.com/2013/03/26/moving-towards-a-female-profile-the-unique-characteristics-abilities-and-talents-of-asperwomen-adult-women-with-asperger-syndrome/
also this on young girls:
https://taniaannmarshall.wordpress.com/2013/06/22/first-signs-of-asperger-syndrome-in-young-girls-pre-school/
I saw an awful lot of things that I could relate to in here, so you might find it interesting reading too!