Newly diagnosed with ASD Aspergers profile this morning

Apologies for the delayed response. I accidentally missed your reply. 

Yeah, I totally get what you mean about uncertainty. And closure as well. I really hope it will all end, either a definite yes or no is better than waiting for a long time unsure of your status. I think it's good that the autism community is very welcoming and accepts people who can identify with the traits without diagnosis. But I think for myself, some clarity will help.

I think my social skills are improving. And I am more aware of some of the rules of how to deal with situations involving people than I was before. Though I think I am still mid-way through of learning these things, and I agree that I'll need more practice to be even better.

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 Plastic, I am not autistic to my knowledge, but my son age 35 is severely Autistic following being deprived of oxygen at birth. He cannot tie up his laces.

During his PIP investigation - Replacing Disabled Living Allowance.- I claimed that his special shoes that he was wearing was special equipment. This they are; but look smart and stylish, a little bit expensive, but they allow him to secure his laces by just simply pulling them, they work on a sliding lock and its simple for him to release them.

As a previous C.Eng like myself who worked on Commissioning "Jason'. You will appreciate the simplicity. Otherwise somebody would have to tie his laces for him.

I was born late 30's being 79.

So for readers who's disability needs this help claim it on your PIP Question form, and wear them when you go for a PIP Medical / Interview.  

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.

Hi, I know what you mean about feeling nothing, my usual emotional state is 'comfortably numb', which I still felt after my diagnosis but today I'm feeling kind of liberated. Just like now that I finally know what the 'problem' is, I can actually do something about it, to manage symptoms. So many things are starting to make sense as well, like why it irritates me so much when my husband has the TV on load while also talking on his mobile on speaker! I hope I get more clarity as time goes on. Are you feeling anything yet?

I'm really sorry to hear that you've had a falling out with the family member who was supporting you. Do you know what the falling out was about? Christmas party is a difficult one, I can understand that it may be anxiety provoking and exhausting but it might also prove to be a distraction. Did you go in the end?

No I haven't had any follow up appointments. How about you?

Yes - you press the button marked DVD (Device for Vital Drinks) and it just pops out - where do I send my invoice?

If I'm nice can you fix the cup holder on my PC?  

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? 

I’d best not annoy you then :-) 

I'm the king of the nerds. If people annoy me, I refuse to install their printer drivers for them.

velco shoes! LOL! I assume you're one of the 'stereotypical' aspergians then?

Undiagnosed, I became a Chartered Engineer, rocket scientist and nuclear physicist - I think if I'd been diagnosed early I'd have velcro shoes.

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 Bagbuss, thank you. How are you feeling after your diagnosis?

Thank you. Its good to know that I'm not alone. We can all help each other :-)

How are you feeling about your assessment when it happens?

Hi Kitsun

i am really not sure how it has effected me it’s a bit odd really before I got the diagnosis I thinking I would either be happy as everything finally made sense or I would be angry I was diagnosed as a child and have struggled for so long, but I don’t feel either I wish I could describe how I felt it it is like I don’t feel anything.

I have had the support from 1 family member throughout the process but we have had a slight falling out, I do think it’s my fault as I have a habit of pushing people away. I can only assume it is just they way I am dealing with it. Obviously I’m a tad upset we have fallen out but am confident that it will all be sorted at a later date. I have a Xmas party to attend on Sunday which I really want to avoid but think getting out may help whether I drag myself there or not I don’t no.

you are right this site has been so helpful for me, even if it is just reading about other people’s experiences. Everybody seems so supportive of one another which is great.

How are you feeling about your diagnosis now a few days have passed? Have you any follow up appointments?

xx

Oh and I REALLY hope SEN schools have improved since the 70's. that sounds very demeaning!

Hi Plastic, I kind of get what you mean. I used to think that I had a really good brain. Academically good and rigid routine=efficient, right?

Maybe it's better that I went through university not knowing my disability. Though I feel that I'd have been a lot less lonely had I known and received early intervention etc. 

This stigma business really needs to go away. Though I think it's less than it used to be?

Hi Beaky, I know what you mean about feeling like you're on the edge of life and not able to fully join in. I spent my early childhood trying to make friends and failing miserably; my later childhood and early teens maybe making friends only to lose them a few months later and i would never know what I'd done to offend them or another girl who'd played with me at guides/after church but then didn't want to play with me at school and I didn't understand why; in my late teens I just assumed that i must be a complete weirdo and during my 20's I assumed that I must just be a really bad person, because what other explanation could there possibly be that no one ever wanted to be friends with me? 

I started to realise that I have Aspergers when I was 34. I also did a few online Autism Spectrum tests and scored really highly. You mention about the female presentation of autism and this is something that I've also researched. It's important to because the classic male presentation doesn't fit with women. If i'd just kept researching the older stuff on autism, focused mainly on males then I probably wouldn't have thought that it applied to me but once I started reading the stuff on the female presentation of autism then likewise, my whole life started to make sense.

I'm sorry to hear that you've been unable to hold down a job for for than a couple of months. What difficulties have caused that to happen? There's more pressure on employers now to make reasonable adjustments for people with disabilities so I really hope that now that you have your diagnosis you have more success on the work front.

I'm glad that you've found some helpful videos on utube, I might have a look at them later. I explained in a reply further up this page that I've been working through a social skills book, with very good results. I hope you can find something that helps you too

will definitely keep posting 

Hi, I hope you get an assessment soon too.. Personally, ,I needed to know for definate as I'm not very good with uncertainty. I prefer things if they either 'are' or they 'are not' as opposed to 'possibly' or 'maybe' if you know what I mean.  It sounds as though you've been thinking about it a lot, do you think that some clarity would help you? 

It's really good that you've reading a social skills book too. My theory (I really hope I'm right) is that learning social skills should be like learning a foreign language, the more you learn and the more you practice, the better and more 'fluent' you'll get at it. What I've learnt so far really seems to be working. How are you finding the things that you are learning?