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 extraneous,

I’m pretty sure that language delay does have something to do with ASD and nothing to do with hyperlexia. I’m also hyperlexic and had no language delay. I think the confusion over whether or not Aspergers is still a diagnosis is confusing the professionals! It’s certainly confusing me! I found this link which kind of clarified it a bit: 

https://www.google.com/amp/s/www.spectrumnews.org/news/new-global-diagnostic-manual-mirrors-u-s-autism-criteria/amp

Basically the Uk will be abolishing the diagnosis of Aspergers and switching to an all encompassing diagnosis of Autism Spectrum disorder. I think we’re still in an in between stage at the moment with some clinicians using the updated ICD-11 diagnosis of ASD and some still using the older ICD-10 diagnosis of Aspergers/Autism/pervasive developmental disorder. Personally I got diagnosed according to ICD-10 criteria and although my assessor or assessment report didn’t specify Aspergers, the report said ‘autism spectrum disorder F84.5 according to the ICD-10’ F84.5 is Aspergers in the ICD-10. To be honest the new criteria in the ICD-11 are very vague and in my opinion they’ll be a lot more people that meet the criteria for ASD that wouldn’t have done so previously. They’ll also be people on the more severe end of the spectrum that aren’t getting a diagnosis that fully takes into account their needs. We’ll all just be ‘on the spectrum somewhere’  Like I said, just my opinion, have a look and see what you think? 

How are you feeling about your diagnosis?

That's weird, I did have language delay but they told me it was nothing to do with ASD but to do with hyperlexia. Go figure! Then they told me aspergers is no longer a diagnosis, then they gave me an aspergers diagnosis. Whatevs! I'm on the spectrum somewhere

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.  

That's really interesting. I'll definitely check it out. The only thing that bothers me about stuff like that is there are some social rules I do actually know but I still somehow can't use them. For example someone asks you a question and you ask them about themselves. I know I'm supposed to ask them in return but somehow I find myself trying to avoid any further interaction and not wanting to get into conversation. I guess maybe the anxiety takes over. I really dislike small talk so I suppose there isn't much motivation to get it right.

I haven't got into any therapy or anything. I wouldn't know where to start. Thanks for the reply.

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?

Hi, it's really worth giving the social skills training a go, I think. I really hope the book helps you if you choose to read it. I certainly feel a lot more fulfilled as a person and a lot less restless since i've been able to start having better interactions with people and form meaningful friendships. Even this morning after my husband's cousin and his wife visited, the wife passed on later that she'd really enjoyed chatting with me. That's so new for me but it's a really good feeling to finally have people enjoying talking with me! The chapters I've done so far are on how to have conversations: how to invite the conversation partner to speak; how to inspire them to speak; the nature of reciprocal conversation (something which my very neurotypical 4 year old daughter already gets but it took me being 37 and reading a book on social skills to get!!!) and also how to make friends. One thing the author does say is that we have to accept that not everyone will want to be our friend (I guess that's true regardless of whether a person is neurotypical or neurodiverse) and I've had to remember that phrase when I've had a couple of false starts, people that said they wanted to meet again but then ignored my texts. I would have to say that those people have been in the minority though. And don't get me wrong, socialising still exhausts me, especially when it's a new person that I don't know very well then I find that afterwards I need to shut myself away/go for a walk/ go for a drive and just focus on one thing so that I can quieten my brain and stop the noise of 'did I say that right', 'could i have said that better', 'do they think i'm weird' etc. But in the big picture I just feel so much better than I used to when I was just self isolating all the time. Have you tried any other self help methods/therapy/other to help you understand or manage ASC?

You don't need to tell people until you're ready. It's your business to disclose as and when you want to. In the mean time, the people on this forum are a massive source of support and advice. I'm finding this forum really helpful, how about you?

I'm really glad that the people you work with are being helpful

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