Newly diagnosed with ASD Aspergers profile this morning

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?

Hi xiv, you say that you haven't taken your diagnosis very well. How has it affected you? What is it making you think/feel? 

I'm sorry to hear that you haven't been able to speak to anyone and have isolated yourself. It is however really positive that you are talking to people on here. I hope you continue to do that. We can all support each other :-) 

He had originally said that my report would say aspergers profile but this was before he had fully read my questionnaire about early years. I was delayed with language so I'm guessing that's why he didn't put it in.

Wow. I might have to have a look. I get a lot of feedback that I am annoying. 

I haven't disclosed to people apart from here. I don't feel ready for that step just yet. There are people at work that have guessed and they understand that I can't deal with certain situations and are helpful with that.

Hi, How did you realise that you are an Aspie? Good old hindsight eh? We can look back now and see the issue was that we were going through life 'blindly' (mind blind that is) and suddenly it all makes perfect sense! Sorry to hear that you have suffered depression. I have too, sadly I think this is the case for many people with undiagnosed Aspergers, a side effect of struggling to fit into a world that we don't understand I guess.

For myself the process of getting a diagnosis started with going to my GP and asking to be referred for an assessment for Aspergers. He didn't make it easy. Initially he asked why I thought that I had Aspergers so I said because I suffer from... and reeled off the diagnostic criteria for Aspergers. The GP then says ' I hear what you're saying but I still don't understand why you think that you have Aspergers' cue a lot of internal eye rolling on my part. I then mentioned that someone I know who is an occupational therapist who specialises in developmental disorders, thinks that I have Aspergers and that a long term friend who is a teaching assistant for children with developmental disorders also has always thought that I have Aspergers and he then agreed to refer me to the local mental team for further assessment. The point to my rambling is that sometimes you really need to argue your case. Maybe take someone with you to support you or failing that quote the NICE guidelines on the responsibility of healthcare providers to ensure a clear diagnostic route for adults. I believe that there is a link to that on this website.

Next step was an assessment by the local mental health team who went through symptoms present and historical and eventually decided to put me through because my social skills were clearly so deficient. That is they referred me to a specialist Adult Autism Spectrum Disorder Assessment team.

Last stage was yesterday morning with said specialist assessment team. I initially did the ADOS module 4 with an assessor. Its really worth researching this a bit first. The tasks they give you are not a test. The tasks are set to structure the assessment and to get you to engage with the assessor. What they're looking for is difficulties in social communication; abnormal eye contact; repetitive or restricted patterns of behaviour etc during the course of the assessment. They also ask about past and present difficulties. This bit lasted about an hour. I then had a 20 minute break before the psychiatric assessment which lasted about 2 hours! (I was exhausted by the end of yesterday!). The Psychiatrist told me at the beginning of the psychiatric assessment that I scored over the cut off mark on the ADOS and thus she believed that I have Autism. But she then did a thorough neurological and psychiatric assessment past and present. I should get the full report in a couple of weeks.

Are you thinking of seeking a diagnosis?

I've shared my diagnosis with family and a couple of long term friends but I don't yet feel comfortable to share it with newer friends for fear of judgement. I've had varied responses. My eldest daughter (age 20) 'oh well it's nothing really'; my husband 'can it be treated?' (more internal eye rolling on my part); my sister-in-law is just being amazingly supportive; one of my friends didn't say too much but said 'oh well they do say we're all on the spectrum somewhere', probably an attempt to reassure me or something. 

Have you been able to share the realisation that you have Aspergers with anyone?

Hi Binary, no, i believe that they don't diagnose Aspergers anymore. What the psychiatrist said was that she believes I am Autistic (which i think they use as an umbrella term now) but I went for the test to find out if I had Aspergers. I don't have Classic Autism as I don't have the developmental delays in language etc and I don't meet the diagnostic criteria. I assume that when I get the full report in the post in a couple of weeks it will say Aspergers profile.

Just a small topic diversion. I understand the reason for getting rid of the term Aspergers (being associated with the Nazi's and all that) but I fear that it will become a little bit like when the pop star Prince changed his name to that squiggle that nobody could pronounce, he just became known as 'the popstar formally known as prince'. Aspergers will become known as 'the autism spectrum condition formally known as Aspergers'. Unless they think of a new name for it of course.

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.

Have you been able to find any resources or people to support or help you?

Hi Lonewarrior. Thank you for your reassurance, I started realising that I have Aspergers a few years ago so I've already had a lot of the anger that I wasn't diagnosed earlier and relief that I finally understand what the issue is. I'm sure there will be more emotion along the way though, my usual emotional state is comfortably numb but when I do feel it tends to be quite extreme.  It s good though to finally have a reason for why I am the way i am.

Do you think you will seek diagnosis?

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. 

hello and welcome. I'm F, 40s, diagnosed Aspergers 6 months ago

Your never alone on here, we are all going through similar issues, and I truly believe all autistic individuals are kind and caring.

Being here is great, no judgement, time to chat freely about anything, find answers, ask questions no matter how strange they might first seem, and being accepted by the whole community. 

One big family ,

() () () () ()

There was a long road near me with a few schools on it - an infant school, a junior school with attached 'remedial' section and another big, old house converted into a residential unit for 'problem' children from some inner-London council farming out the trouble-makers.

They all had a reputation for total failure.

Love the shoelaces comment.  Although the special school I attended in the 70s didn't even teach that.  Now we have tons of money being spent on special needs children with statements and care plans etc.

Back in the 70s we just attended schools.  I wonder what OFSTED would have made of these schools.  ZERO academic content, laid back very relaxing atmosphere.  I enjoyed my stay.   But the school did nothing to prepare me for further schooling or the realities of the  life outside.

Thanks :)

After diagnosis, I informed work and my manager decided to use it against me - career suicide.

I grew up in the 70s when any 'different' kids were sent to special remedial schools where the expectation was to become proficient in tieing you own shoelaces by the age of 18.

That is a good attitude. And this perspective makes a lot of sense as well. The ASD label is associated with a lot of stigma and it may give people an excuse to treat you differently. I like your way of thinking. 

Hi and welcome. Same here, I'm on the waiting list. I can relate to everything you said. You're not alone and through this forum I'm finally able to believe that

I'm glad I wasn't diagnosed until I was 42 (10 years ago). I suspect that my career and sucess would have been very different if I had been labelled at an early age.

As it was, I had never considered that I was faulty - I just thought those around me were lazy, incompetent and generally disappointing humans. They were all talk and no action - and even then, they didn't do what they said they would.

If I had been diagnosed as a child, I think the stigma would have pre-limited my career choice.

I was diagnosed last Friday (7/12) with ASD Adult Aspergers. It was so good to finally have that actually fully confirmed. I'm 34 and have spent my life wondering why I always feel like I'm on the edge of life all the time, not really able to fully join in. More and more people kept either presuming I was autistic or telling me I was acting like I was. 

At first I thought "no, I can't be autistic...autistic people are onviously more disabled.". I then had a big health burnout and got a diagnosis of ME/CFS...which was actually a good thing because I at least then had a legitimate reason to avoid going places and doing things that I found so hard or people would understand if I left early or stayed quiet in a corner on my own at a party.

It was about 9 years ago that I finally decided to take the autsim suggestions I was still hearing from friends and those aound me more seriously. I did a few online tests and scored very very highly. I then discovered stuff about the female presentation of autism and suddenly my whole life started to make sense.

But it was only 1yr ago I truly accepted that I fitted into the autistic spectrum...and I decided to accept autism and persue a diagnosis. I am so glad I did because I now have that final official confirmation that has effectively set me free!

I have not so far been able to hold down a job for more than a couple of months at a time..now I will be able to ask for reasonable adjustments to be able to cope in the workplace.

I hope you can start to feel positive about your diagnosis soon. I found Sarah Hendrickx's videos on youtube helpful to watch as she gave words to a lot of my thoughts and feelings so I now know better how to describe to others what I am experiencing.

Keep posting on here too as sharing ecperiences can help each other feel less alone in what we face in life.

I'm still waiting for an assessment. I've heard it can take 2-3 years in my area... But I can understand your feelings. For many years, I've actually been really hesitant of whether I should ask for an assessment. Every time I think of it, I simulate the possible outcomes. And in the scenario where I do get a diagnosis, I would feel happy that I've got an explanation of why things are difficult, but at the same time I would be upset about missing out on early intervention. The fear of feeling upset and confused had impeded myself for seeking an assessment for many years. I'm glad to hear that you are working through a social skills book and that it has been helpful. While I'm still currently waiting, I'm also reading a social skills book and working on real life social skills. Communication and the right way of communication could be really helpful in life, for example, it would help you get what you need at work. You seem to have made much good progress, getting a diagnosis and trying to improve your life. I hope I can get an assessment soon.