Newly diagnosed with ASD Aspergers profile this morning

Hi,

this is my first post on here. I Had the ADOS and psychiatric assessment this morning and was told that I have ASD/Aspergers, which I have suspected for a while.

part of me is frustrated that I wasn’t diagnosed as a child (I’m 37 now) and that I missed all the early intervention stuff.

part of me is relieved as it explains so much of how my life has been and the difficulties I have had. I guess now I know for definite what the issue is I can try to manage symptoms. I’ve been working through a social skills book the last few months which has helped so much. I really wish that I’d had that book 30 years ago, a step by step guide to social interaction, it would’ve saved me a lot of rejection.

mainly I’m feeling numb and not sure how I should feel.

Anyone else freshly diagnosed or awaiting diagnosis out there?

Parents
  • Hi there, I'm female, late 50s, diagnosed nearly 4 weeks ago with ASD so fairly fresh. Used to teach interpersonal communication skills years ago (oh, the irony!). 

    I'm reading Living Well on the Spectrum by Valerie Gaus at the moment. It's an excellent account of how things work differently if you are ASD and she suggests ways you can change your environment, adapt and accept. Best of all this workbook uses a strengths model identifying ways in which ASD can actually enhance life. 

  • Hi Sunflower, How're you feeling about your diagnosis? Have you found that your background of teaching interpersonal skills has helped you with your Aspergers? May have helped mask it too I guess?

    Sounds like you found a good book, I might have a look at it a some point. In what ways do you feel that it's helped you?  I'm focusing on the social skills training books and online coaching at the moment as it makes me feel more validated as a person. 

  • Hi there it was definitely through skills and knowledge developed in specific types of employment that I managed to stay under the radar for so long. My career peaked in my early 50s - then my husband got very ill, I was under a lot of stress and everything started to unravel. I might have had a more conventionally 'successful' career had I been able to get the help and support I needed earlier. I had a tendency to flit from one job to another because things got too difficult to manage.

    Masking for such a long time has caused lots of mental health and relationship problems. It is tempting to try and live like someone neurotypical in order to fit in, and it probably had advantages for me in career terms, but it came at a huge cost. I was able to manage my own mental health problems for many years but ultimately the strain got too great. Just before my ASD assessment my elderly dog died and I coasted into the side of the road and could not get going again! 

    I am glad to have been diagnosed and I am living a more authentic autistic lifestyle now. The workbook I mentioned is helping me understand the mechanics of how the autistic brain works - thoughts, feelings, communication and behaviours. It is very helpful on environmental and sensory issues too, and encourages acceptance of what cannot be changed. Best of all, like I said before, the author highlights strengths associated with ASD, so it is an optimistic read. 

    Your online coaching sounds really interesting. Is that something autism specific? 

Reply
  • Hi there it was definitely through skills and knowledge developed in specific types of employment that I managed to stay under the radar for so long. My career peaked in my early 50s - then my husband got very ill, I was under a lot of stress and everything started to unravel. I might have had a more conventionally 'successful' career had I been able to get the help and support I needed earlier. I had a tendency to flit from one job to another because things got too difficult to manage.

    Masking for such a long time has caused lots of mental health and relationship problems. It is tempting to try and live like someone neurotypical in order to fit in, and it probably had advantages for me in career terms, but it came at a huge cost. I was able to manage my own mental health problems for many years but ultimately the strain got too great. Just before my ASD assessment my elderly dog died and I coasted into the side of the road and could not get going again! 

    I am glad to have been diagnosed and I am living a more authentic autistic lifestyle now. The workbook I mentioned is helping me understand the mechanics of how the autistic brain works - thoughts, feelings, communication and behaviours. It is very helpful on environmental and sensory issues too, and encourages acceptance of what cannot be changed. Best of all, like I said before, the author highlights strengths associated with ASD, so it is an optimistic read. 

    Your online coaching sounds really interesting. Is that something autism specific? 

Children
  • Hi thanks for this information. 

    My husband has a rare incurable condition so it's a case of living wih it and having the best quality of life possible. I researched his symptoms myself and was way ahead of the consultant in working out what was wrong. My autistic hyperfocus comes in useful sometimes! I also researched Dupuytrens Disease, which I have had for a couple of years, and managed to get radiotherapy just before NHS funding was cut. Needless to say autism has become a bit of a special interest of mine now...

    My career profile wasn't that unusual for people in academia and project management. I had some real successes because I was relatively impervious to people around me saying certain things couldn't be done!  I am having to rethink my strategy for getting by now. Too much masking and acting as if I was neurotypical for so many years wore me out! I am enjoying being myself with people who accept that autistic people have a different style of communication. 

    I had a look at Daniel Wendler's work and I can see its appeal and usefulness for some people. My problems seem to have developed from prolonged attempts to pass as neurotypical. The strain of effortful communication combined with difficult life events eventually became too much. Perhaps that is why I am taking a different path now by embracing my autistic characteristics rather than modifying them. 

    I've always been part of the disability rights movement, so that probably influences my perspective on being diagnosed autistic. It feels a bit strange to be letting go of behaviours I have been hiding behind for so long, but that is all part of dropping the mask. What I love about our community is the fact that we are all similar and yet different, finding our own unique ways of living satisfying lives as autistic people. 

  • Hi, sorry to hear that your husband got unwell, I hope he is better now? I do know what you mean about flitting from one job to another. I do agency work partly for flexible working hours but also not having a fixed place of work allows me to stay on the outside and the focus is my ability to do my job rather than how well I integrate with the team. 

    I think mental health problems are quite common in ASC, especially undiagnosed! I've suffered a few depressive episodes over the years.

    I will definitely have a look at the book you're reading, it sounds good. The book and coaching that I've been doing isn't specifically for people with Autism but it is written by a guy who has Aspergers himself. I hope you don't mind but I'm going to cut and paste from an earlier reply to save from writing it all out again:

    I've been reading and working through 'Improve your social skills' by Daniel Wendler and it is AMAZING! Basically he's an American guy with Aspergers, but he wasn't diagnosed until his teens. He then studied social skills intensely for years and now writes books to help others learn social skills and does online social skills coaching too. The way he writes is really logical and easy to make sense of, his book covers everything from conversation; body language; making friends; eye contact; empathy; etc. Honestly, I'm only 3 chapters in but a few months ago before starting his book I had 3 long term friends that I'd maybe see two or three times a year, and I always felt I was being annoying (most likely droning on and on about myself) and used to get negative feedback a lot. Now I have a few more friends that I meet with regularly and I'm actually getting positive feedback for the conversations I have or the support I give other people. The hardest part at first was my own social anxiety, difficult to be confident after a lifetime of rejection. But, as I build more relationships and get more positive feedback from people my social anxiety is lessening a lot.