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Post Diagnosis Support?

BumbleBee

Hi all, 

I was diagnosed with ASD earlier in the year. Even though it is something I have thought and believed my whole life, I feel like the diagnosis has turned me upside down and I feel like I don't understand myself anymore. It felt like the assessor saw things in me that I don't see myself, but in the report she wrote, nothing of the sort was described. I received a post-diagnosis email but there wasn't much on there either. I just want someone to talk to who knows Autism well and I can organise my thoughts and learn more about myself. I have tried reading things online but it just doesn't seem to be helping. I want somebody to talk to about it all that knows what they are talking about. I just don't know where to turn.. I feel so isolated and alienated from myself, did anybody else have this experience? I'm from the East Midlands, can anybody signpost me to something that may help? I tried a peer mentoring-type service, but once I signed up I heard nothing more from them, I have sent follow up emails with no response also.. I have joined local groups on Facebook but it all seems to be child-centred and parents looking for school placements. 

Any feedback would be greatly received, I don't want to keep feeling this way.

  • in reply to Urban Wandering Photographer

    There was no such thing as autism when I was at school, you were backward, slow or stupid, just as you were if you had any learning difficulties, if you had ADHD you were naughty was well as all the above.

    I dont' think medical professionals do know what to do, partly because of the question of, Is Autism a medical condition? If the answers yes then we currently have no treatment for it, if no then why are they involved?

    It is hard though, I was diagnosed at the age of 50, I always knew there was something different about me, I went through all sort of things trying to find what it was, was it because I was an only child who only played with one other child before I went to school or what? I was diagnosed and left to get on with life, there was a feeling that I'd managed to get to 50 without help, so I could manage the rest of my life without it. I have tried to get help, but it's very difficult, even when in the company of those who's job it is to help, that help seem to be limited to making sure you have the right benefits.

  • A diagnosis does not change the person you are, you are the same person, with the same traits as before the diagnosis. The diagnosis is just an explanation of the reasons behind some facets of how you are. I found my diagnosis to be very positive, though it only confirmed what I had realised for myself beforehand. I had passed the vast majority of my life (diagnosed at 59) thinking that my odd traits, difficulties and limitations were  entirely personal - I was just bad at being a human being. Realising that I was autistic was a liberation for me, I realised that I wasn't bad at being a human being, I was actually very good at coping with neurotypical society, quite inimical to me, as an autistic person. I coped with problems on a daily basis that did not even exist for neurotypical people. I was amazingly strong and not weak. I also was overjoyed at finding there was a community of people like me in many ways. After a lifetime of cutting all labels out of clothing, and thinking it odd that manufacturers kept adding these physically irritating things to clothes, I almost wept when I found that cutting labels out of clothing was quite common in autistic people. I had found my 'tribe'.

  • I was diagnosed last year. 

    I still feel lost. 

    I don't know how the schools I attended did not recognise that I was Autistic. 

    I was recommended some books to read. They are not going to help me with my social skills though.

    I still need to get in touch with the GP about my Autism, but I cant get an appointment. All they tried to do was put me on anti depressants, which I don't really want to be on because they are not natural. 

    I feel there is a real lack of support for people who have found out they are Autistic. It is a big shock. Living in a world which is not designed for Autistic individuals is overwhelming.

    I get the impression medical professionals have no clue what to do. 

    Mainly because it's a new area of neuroscience.