What does your Autism mean to you?

I have been looking around the various autistic advocacy groups, and they are certainly a mixed bag. I appreciate that some people are into word games, wearing badges and pride festivals, but I'm not. We need a kind of trade union, not the identity politics which has failed elsewhere.

Hi! My autism (self-diagnosed) means fear and loneliness... that's one of the reasons i joined the group. 

I will get better.

No worries! Hopefully this link is more useful. I might use the first link to access my own medical records, just out of interest.

I’m aware that way back when medical knowledge wasn’t as advanced as it is now that autism was considered by some professionals as a type of psychosis. Obsessive compulsive disorder has been considered as both a neurosis and a psychosis at different times over the years. Luckily times have changed. 
I imagine that there was a lot more stigma surrounding mental health and related conditions back in the 1980’s. Certain cliques of people at university probably didn’t help either! There’s predatory manipulators in every walk of life, sadly! Our underlying neurology makes us more vulnerable to them!

I understand that is true now but it wasn't in the past

Yes, since I’ve been diagnosed, of the friends that I had before my diagnosis, one of my friends has also been diagnosed. Another has self diagnosed and there’s another couple who are probably in the spectrum.

I do think that life is harder for autistic people. That’s one thing that I’m starting to realise.

That sounds good, and interesting

Kitsune - thanks for that! The other links I tried weren't much help!

This was the 60's, as said troubles like these were seen as mental illness, not organic. That 70's documentary I mentioned on this thread earlier referred to full-blown Kanner's autism as a psychosis.

Then again, the sense of self or ego idoes seem to be impacted, from what I gathered later on, reading autobiographies from the likes of Donna Williams. I read a book on so-called childhood schizophrenia in the early 90's that appeared to fit me to a tee. But it never said what these children were liked as adults and whether or not they actually did become mad. Wiki now assures me that by the end of the 80's this definition was changed, it was recognised many of these children were simply on the spectrum, excluding those who did hear voices or actively hallucinated other things (despite the taunts of my lovely school mates I never, ever saw things that weren't there).

So then in the early 90's it was quite a jolt I saw an excerpt from my medical notes saying 'I may be prepsychotic!'

That was quite a jolt. My mother once said that I had been diagnosed with an obsessive disorder, not meaning to let that come out, but a counsellor I once visited as an adult told me know that couldn't have been the case as in children was classed as a psychosis!

Either way, the fear, the guilt, was very much in the air and when there were no jobs in the 80's all these doubts came out again on the part of my parents. But in any case at uni, there had been far too many opportunities for some thoroughly unhelpful navel gazing into the dodgy esoterica that had then been circulating around at the time, all going on about getting rid of the ego and false persona to tap into this marvellous great Self and individuality on high. I wish so much now I had never got into all that hooey and wasted so much time, energy and angst over it, not least because there were plenty of predatory manipulators within that circuit who couldn't resist having their moment of power through playing on these stupid post adolescent fears. 

I don’t know if any personally. Do you belong to any of the autistic women’s Facebook groups? There are often different groups etc pop in on those.

The two other adult social groups that I sometimes go to are not like this. In one, there is always an activity to do so everyone is busy doing that and the other one, I’m pretty sure that the person who facilitates it is autistic, in any case, people are playing cards and not talking about deficits. Have you been to groups where NTs have been talking about autistic deficiencies?

I’ve been to a couple of different parent support groups and they can be a bit like that. NT parents and group facilitators who have no clue what it’s like to be actually autistic. Don’t get me wrong, I’m sure they all want the very best for their autistic offspring but I find it ironic that I either end up feeling completely cut out of their conversation OR having to educate as to what it is actually like to experience something from the autistic perspective.

I’ve put a link below in a separate answer that might be useful regarding accessing your UK medical records. How odd that the child psychiatrist thought that your drawings of baths were drawings of coffins and that your speech regression got blamed on jealousy! Seems like too much of a tendency towards the psychoanalytical interpretation of everything rather than any recognition of underlying neurological difference! 
I also feel like the GP thinks I’m an attention seeker when I go there about anything, so I rarely ever go!

UK medical records are now free to access, certainly for UK residents. Here is the link with instructions on how to obtain them:

https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-access-your-health-records/

If you are not registered with a GP in England, you can still access your medical records. Here is the link for that:

www.england.nhs.uk/.../

I've seen my childhood medical notes... I saw them over twenty years ago. They are incredibly one sided, which I was not happy about and I had no way to put my side over. Most GPs - if you are in the UK - will allow you to see your own notes.

I wish I could see my medical notes properly but I can't as I am not registered with a GP in the UK, haven't been for a long time. I think I mentioned having caught site of them once when a doctor just let them be seen. I was sent to a child psychiatrist at 7-8, continued to see him until 10, when my family moved. I nearly ended up being hospitalised as he used to do art therapy with me. I had a fascination with my grandfather's bath, as he might have mentioned sliders and leaks - but he thought I had been drawing coffins and decided I was depressed. As s teen that was an interesting surprise for my parents. I didn't even know what a coffin was!

It had been decided I got delayed developmentally because I was jealous after my brother was born, which is when I regressed and stopped talking. All those destructive deep and dark emotions. Mother thought I was mentally subnormal, but the first educational psychologist I saw found that wasn't the case at all.

First year at secondary school saw me sent to a new psychologist. I grew to dislike all this attention and scrutiny, but later on, also felt it was all brushed under the carpet and made to feel like an attention seeker for seeing the GP about anything.

I little more honesty and openness about it all would have been a great help!

I've been socialising with autistic people my entire life unknowingly. I can look back and think of a few way before it was a thing. I'm currently visiting two guys who are almost certainly on the spectrum although undiagnosed. :) 

I find other people's autistic behaviour sympathetic, annoying or bewildering depending on the circumstances. If we share the same interests, it's great. If we don't or of someone stims all the time, I find it really irritating and hard to tolerate.

So, like I say, I see autism as both a good and bad thing, depending on how it manifests. 

What I do find disturbing is how many autistic people don't have jobs, are homeless, commit suicide etc.  Schools, medical personnel and employers barely understand it. That is a tragedy. I despise the identity politics some autism activists espouse but we do need some campaigning on this issue... It's far more important than whether we say "autistic person" or "person with autism".

How do you deal with NT led groups where NT people speak and autistic people listen hoe deficient they are?

I’m glad that you’ve got the forum launched. I’ll have a look over the weekend. 
That’s really good that you’ve been able to make links with your local groups. It’s good to bring together the autistic community, rather than us wandering through life solitary and cut off from the rest of the tribe :-)

Yes, please let me know of other advocacy groups. I am familiar with Mathiew's Hub.

We are launching our website and forum . It helps autistic people to self advocate and discuss new services.

 I have links to my local groups and organisations. We are primarily a national forum where people with niche interest could find peers. Where a new service development could achieve scale.

Have you tried socialising with other autistic people? I find that this works much better

I’m very much for building links with other autistic groups and organisations. I have links with a couple of other autism social groups and an autism information page now. Although I do have a local resources list on my group page and I do try to signpost where possible, I’m not an advocacy service. Do you know of any other autistic led advocacy services? If you don’t then I might know of a few places where you might find some or something similar. How is your advocacy service going?