Getting a diagnosis

I did all those last week (part of deep research into whether I am autistic!) I score high on all of them, but I had to think carefully about the answers because socially I appear to enjoy myself with a couple of friends but I do feel very awkward at times and I over think my eye contact. For example a dog walk side by side with someone I know is great, but I don’t find meeting new people and talking on lighter topics very easy. So I had to think carefully about my answers. AQ 50 I scored 42, RAADS R I scored 164. Cat Q total 143. I can’t read my writing on one of the others though

Yes I have done the right to choose route. Just need to wait now. 

I hope it all goes well, unfortunately anxiety seems to follow autistic people everywhere. Just a thought, if you do get referred, the waiting time is normally about 3 years, it does vary. If you want to, ask for Right to Choose, it will shorten the wait to hopefully months.

www.autism.org.uk/.../how-to-request-an-autism-assessment

Stuart333 said:

You kind of put your life on hold while you wait for it, it becomes a focus taking energy from elsewhere, and it attains a status in your head it probably can't live up to

I can definitely relate to this pre and post diagnosis. After the diagnosis you can still be waiting for something to fall into place.

Try the AQ version with 50 questions.

The 10 question one is like a simple pre-screening test, I think 6 or higher is the target The 50 question one is the main one, 32 or higher has clinical significance. If you score highly on that there shouldn't be much argument. It is quite reliable and has high correlation.

The time they suggest to do the questionnaires seems too short. It took me 2-3 times as long as I always spend ages thinking about what the question really means. I also did them multiple times and made sure I had examples to back up each answer (but that was just me being obsessive, you don't need to do this).

If you like doing them, the EQ helps as does the RAADS-R and the masking one.

It's hard to see why it would be negative to understand yourself better. The main issue I can see is the time it can take.

You kind of put your life on hold while you wait for it, it becomes a focus taking energy from elsewhere, and it attains a status in your head it probably can't live up to.

It confirms, validates and explains things, but it doesn't fix any issues and your life is still the same. It is up to you to make or request changes. Although you can at least do so from a more confident position and you have a report to back you up.

Everyone who has replied to my initial question has helped me come to the decision to go for it. I have applied through my gp and already answered many questions on the GP acceptance form. I am now worried if I have answered the questions well enough to be accepted. Also did the AQ 10 (?) and scored 9. Just need to wait now. Even this is a big thing for me and I feel anxious. 

Oh wow such a great reply. I am going to write notes on all the replies I have received. It seems there are very few negatives to being assessed! Thank you for taking the time to write such a good answer. 

While it is very much s personal decision (whether or not to seek assessment for a potential Autism diagnosis), there were two phrases from a 2023 research paper published in The Lancet which resonated with me when I considered my next steps:

Elizabeth O’Nions, lead researcher and postdoctoral researcher (UCL Psychology & Language Sciences), explains why this research is important:

“This matters because autistic people often experience discrimination and exploitation in society. They may have unmet support needs, even when they appear to be coping with life."

“Having a diagnosis means that someone can advocate for their right to reasonable adjustments and the support they need.”

Further Details:

Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data

O'nions et al. (2023).

Overview:

https://www.autism.org.uk/advice-and-guidance/professional-practice/under-diagnosis-of-autism-in-england

Full Paper:

https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext

However, the paper's Clinical implications last paragraph does provide a reality check / management of expectations:

"Whilst addressing underdiagnosis of autism is key to
reducing health inequalities, it is not sufficient without
other policy initiatives, including better post-diagnostic
support, upskilling of providers, and a national public
information campaign to “shift the attitude and behav-
iour of millions of people” towards better understanding
of autism and inclusion of autistic people.43 p.7 These
initiatives are of paramount importance to ensure that
having a diagnosis is of meaningful benefit for autistic
people."

This means self-education and self-advocacy are very important.

In my County, the adult Autism's assessment waiting list projection became so long that the service closed the waiting list to new adult applicants.  Therefore, via GP referral, I joined the Right To Choose (RTC) process - where the NHS lets contracts to other providers elsewhere in the Country.  Instead of a decades-long waiting list the RTC ones vary by provider with example waiting list estimates of about 7 months, sometimes less.

My RTC assessment was a fully online process - others are in person or a mixture of the two routes.

My personal considerations (as I approached assessment) revolved around 7 key onward journey possibilities:

1) learning about advocating for my improved navigation of healthcare settings,

2) finding out about the application of reasonable adjustments in the workplace (and other public places),

3) exploring how best to focus and direct my ongoing education about what strategies might better support my lived experience of being an Autistic adult,

4) to learn about being kind to myself if there might be an intersection with other physical health / mental health / neurodivergent presentations I potentially experience (and pragmatic supports around eating, drinking, bathroom, stress or anxiety and sleeping),

5) investigating what safeguarding boundaries might afford me in relationships with relatives (and others),

6) would I feel differently about using a Sunflower hidden disabilities lanyard / alert card etc. to let people be more aware that I might have support needs - without oversharing my full medical history, and

7) just what could assist me to experiment with masking less (where I felt safe to do so) and how might that help to begin to make me more aware of my energy / comfort levels, encourage me to try out things (e.g. noise cancelling headphones) and techniques (spoon theory and better controlling my calendar to realise that investing in showing up at a busy event requires recovery time too).

I admit that I am still very much a work in progress - and that pace of progress can vary in productivity now and then (as adults juggle other duties and priorities, plus your physical and mental health can sometimes need to dictate the pace too).

The level of support from other sources can be frustratingly "variable" at best.  Which means your personal mantra benefits from including concepts such as: "pragmatism", "practice", "perseverance" and "prevail".  That said, all people, that means Autistic adults too - are allowed to ask for help when they need support.  If the community here can be of support - I am confident we try our best to do so.

Society, over many decades, has been taught a bit about Autistic so-called "deficits", not least of which, by the models used over the years for assessment / diagnosis, now our community is finding ways to share with our loved ones, work colleagues, clinicians and the wider World: examples of the types of positives we can contribute too.

Sometimes we might need reasonable adjustments to navigate the World at our most productive and in our more comfortable state - so what?  Those adjustments are often no / low budget and more about a bit of understanding and patience with each other.

We are a really diverse Autistic community - so we are individual in our own discovery journeys (what challenges / assists me?) - however, there are also threads of common denominator in our lived experiences to share too.

By the way, our community outlook here is whether; self-realised / self-identified, on an assessment waiting list, or in receipt of a formal diagnosis: everyone is welcome.

I wish you all the best  

good luck with you decision I was diagnosed 6 months ago at 56

For me it has opened the door to therapy, Iwithout which my mental health was suffering - as was heading towards burnout.  I've now started to reach out and accept more help and support, which is quite a major shift for me to do that.

At work I have not formally requested any adjustments but my manager seems more accommodating to my needs.

if you feel you won't get any benefit yourself - then I personally believe there's no reason to seek a diagnosis.  Good luck with your decision, but even if you don't feel the need now, you can always seek an assessment later on

Having a diagnosis has enabled me to know more about myself. Also, it has provided me with a better understanding and awareness of the condition which I can share with others.

On the other hand, it has also provided me with more doors to open for support should I need any in the future.

Okay, I get all that, it definitely would help to be recognised as someone who needs support or accommodations as I have struggled for long enough!

Thank you for your advice, everyone here is so helpful. I suppose you have all been in this situation before me and know how it is to feel a bit lost. 

Yes I have anxiety for a very long time, as long as I can remember, but also depression, fairly low level depression but enough to affect my daily life. I’ve had CBT and standard counselling, the CBT  had no effect on me at all ( although I did become a little obsessed in the therapist!)  and the counselling helped in the very short term. I have since found myself another therapist who has brought me here to this point. Still feel very anxious about so many things in life, it’s a permanent part of me. 

I said the same to my therapist, she reminded me that those services are there for people like us as well. 

You are only 13 years older than me. I felt it would help me understand myself better if I had reasons for my recurrent anxiety and low mood. I just thought perhaps I was overly introverted, distant and unsociable. Perhaps I was some miserable killjoy who never found anything fun, I had accepted that version of myself up until a clearer picture came together. So if self validation and or validation to others (not that you need to) is something you may be interested in I would say it’s worth it. There isn’t a whole lot of support after the assessment however and depending on where you are therapy can be hit and miss, long waiting lists etc

For me it would be important to be sure, what I've been suffering from my whole life, but when I think about this whole hustle, long waiting, talking about my life to strangers and possibly not being taken seriously, I fear and I don't know it it makes sense. Also my therapist does not see any need to medicate me, I asked him to Diagnose me with what he can and what he sees in me. Anxiety fits much better what I experience than depression.  I have an impression,  that many professionals,  if they can't understand,  what's going on and what's the problem,  then... dang! Depression 

Being in my early fifties when I was diagnosed I wanted answers as to why my life never quite worked out. I had labelled myself as shy for all my life to explain why I struggled in social situations and even communications at work. I am intelligent and am educated to doctoral level in my career field related to healthcare but really struggled in the numerous interviews I had over the last 30 years. I hoped that by being diagnosed would help me be accepted and maybe get reasonable adjustments to support me in work.

I was relieved to get my private diagnosis (I could not wait the years it would take via NHS in Scotland). Next I went through a long period of self reflection and grief by viewing my life and certain events via the lens of autism. I am now more accepting of myself and my limitations and being kinder to myself.

Two years down the road my life has turned upside down. I naively thought my employer (NHS) would be more understanding but I was told that my requested reasonable adjustments were in their eyes unreasonable and I could no longer remain in my post and therefore be redeployed. The issue is my qualifications are in a very niche scientific field and the prospects of achieving a position of commensurate salary are very limited and I could face my employment being terminated in the very near future. The good old NHS, a respectful, inclusive and disability confident employer? It is all for show and HR make what they want up from policies and ignore the law. In short I have been discriminated against and in the process of a employment tribunal claim. It seems that I am not alone in this situation.

I only mention my employment experience because you said you were a nurse. I just wanted to open your eyes and not be naive like I was and not to scare anyone out of getting a diagnosis.

In short the diagnosis has given me answers, a label that can be both beneficial or a burden, a new found community (here) and the confidence not to hide who I am and to fight injustice.

I would advise that you get an assessment as I have personally found it to be helpful knowing the answer. If you do have autism then you can then hopefully find ways to cope with having autism and if you haven’t got it then at least you know it’s possibly something else. I do find having autism frustrating as it’s harder for me to recover/move on etc personally but at least I know why I struggle, as annoying as it is. I’ve also been diagnosed with complex ptsd on Monday and awaiting a general assessment for other conditions as I am suspected to have some personality disorder. If you are in the uk I would recommend going with psych uk and tell your gp it’s your right to choose if that’s possible. I wish you the best