newly diagnosed 20 years too late- and I'm confused.

Hi everyone. I'm 20 years old and have just been diagnosed with ASD (Aspergers).

I have never been 'normal'. I'm too clever and capable while also totally socially inept. I've had meltdowns all my life. I often regress into a younger version of myself and loose my communication if I am anxious. I can't deal with change or new situations. I flap and stim. I had a dummy and sucked my thumb until I was 12. My senses are crazy heightened, the way I see the world is different and this has always been the case. Why. Why when its soooo obvious - Why did no-one 'see' me? 

I deserve an oscar for my masking skills, but I wasn't always this good. Before the teasing and berating from my family about my 'stupid, silly, childish' behaviour (e.g. stimming, having meltdowns, my 'baby voice') I was just weird quirky little me. How did the teachers miss it? How did GPs etc miss it?

I don't really understand- I feel confused and frustrated and sad and angry. I have managed to cope with some incredible trials, that perhaps if I'd been diagnosed I wouldn't have managed, purely due to not building up the survival skills. But I don't want to live my life 'coping'. And genuinely- that is an accurate representation- coping, copying and pasting, imitating, surviving. 

Anyone have some advice? Resources you think I may find helpful? Gone through a similar thing? 

Thanks <3

  • I didn't find out until I was in my 50s. I've always been interested in sociology, psychology, the ways we learn etc. so it was natural for me to watch a tv programme about Autism a few years ago - and instead of just focussing on the usual stereotypes, they included an Autistic woman who gives presentations and training in Autism and I really identified with her. This led to me researching on the internet, doing the AQ50 test and being shocked at the result. But being female and born when I was it would have been near impossible to get a diagnosis as a child.

    I didn't show classic Autism behaviours as a child, however I was highly sensitive, curious, and sometimes quite detached, often daydreaming and living in a bit of a fantasy world. At school I was quiet, well behaved and top of the class in reading and spelling, so the teachers just thought I was a model pupil, however I was quiet as I was scared of some of the other kids and was bullied for a while as a teenager. I would escape reality by reading books as much as possible. I had few friends and felt a bit of a misfit.

    Despite being bright I struggled with learning what I needed to pass exams in a school classroom environment. I have taken online and distance learning courses as an adult and did much better with these, gaining the equivalent of 2 A Levels in accounting with AAT and a diploma in social sciences from the Open University. I have had numerous jobs, never staying in one for more than 5 years, although I have no plans to leave my current job which I will have worked at for 5 years in May.This may be because I now understand myself better and it has helped me adapt, or because I feel settled and accepted - I suspect it's a bit of both.

    I am open with my colleagues about my autism but I refuse to see my autism as a disability or disorder. For some people, I know that their autism does disable or disadvantage them, but I am lucky in that I have no learning difficulties and have traits which give me an advantage in some fields. During my 30s I trained on the job as a special needs teaching assistant and spent five years working with children with learning difficulties - my mentor said I was very sensitive to their needs. I have also spent a lot of my working life in accounting roles, which I excel at due to my highly systemising brain (and I particularly excel at Excel - ha ha!)

    The thing that has helped me cope and understand has been learning about Autistic and NT behaviours and how they differ, which helps me understand myself and others and enables better communication. Reading the experiences of others on this forum really helped me feel less "different" and reading a book called " A field guide to Earthlings" by Ian Ford (a guide to neurotypical behaviour from an Autistic viewpoint) was extremely helpful.

  • Though I have not been assessed, as I write this, I would be rather surprized if I am not on the spectrum. Actually, so many pieces now fit that I would feel lost if I found out I wasn't on the spectrum. I write this not having had an assessment yet. 

    When I look back to my educational life I really ask myself how no one picked it up? From a very early age it was soo obvious!

    When I mentioned to an older gentleman that I was waiting to be assessed, his wife, who is a secondary school teacher of a large modern school said "No way are you autistic. You are not dissabled. You dont have a wheelchair". Now this is part of the problem. The concept people have of what they think autism is, is warped into assuming that those on the autistic spectrum have a severe physical dissability, and yes, some do... But as the news tends to centre around the worst cases, people assume that only those that have physical dissabilities through it are on the spectrum. (I actually thought this as for quite a few years I had people occasionally tell me or ask me if I had autism or aspergers syndrome.. I could not relate due to my concept of what I thought it was. I used to think to myself  "I am able bodied. I am not autistic". Why do they say that?" Why did they think I am?)

  • I feel your pain as by now you will have developed many coping strategies.  I guess your best bet is to maybe get some CBT sessions with a Physcologist ( although there's bound to be a long waiting list unless you can go private). I know that my son received some counselling (private but was quite a reasonable rate) for an hour once a week. It has helped him coping with being away at University.

    Theres are probably resources available in your area that are provided on this site. (In our case there is also Hampshire Austim, but maybe a county organisation in your area?)

  • Hmmmm.... I think just talking with people on the spectrum can help as it made me realise a lot of my “weirdness” wasn’t unique to me and others went through the same. I’ve found chatting with others more therapeutic than any official help. I’m on hand if you need a chat, just send me a message. 

  • A question I so often have asked. And sound bloody familiar. 
    everyone telling you there’s nothing wrong with you and buck your ideas up? 
    I also found thumb sucking till teens therapeutic is this a sign?  Took 2 separate braces and anti biting compounds to stop.