Beginning the road to diagnosis

Interesting your point Misheard Lyrics about the imposter thing, I have struggled myself on this exact same point but have forced myself to come back after battling in my head for a few days. Still not settled the argument with myself but trying....

Firstly, welcome to the chat, don't worry that you haven't got a diagnosis yet. There are lots of people here who have been in similar situations and understand the feelings you are describing, and can offer support and advice. Before I got my diagnosis I thought I might be a bit of an imposter in this community too, but in time I came to realise that thought was just in my own head.

Self diagnosis is valid, but if you choose to go for a formal diagnosis it will be a long wait, as you already know. For me it was over 3 years, and it can be longer depending where you live. I chose to go for it because I didn't fully trust my own judgement, and the lingering uncertainty became too much. I also figured that however long it took I could either have a result at the end of it, or just be a bit older and still not sure enough.

Some fears I had about being too good at masking to get an accurate diagnosis came to nothing, the panel got back to me within 2 hours and highlighted all kinds of autistic traits and behaviours they'd observed. After my diagnosis it was still a "rollercoaster" of emotions, I spent a long time reviewing my past through the new lens, and I'm also working through many years worth of internalised ableism. But I'm glad that I did it because I feel that I understand my life now better than I ever did.

Best wishes. 

Cheers! Just learned something new...

No worries and same to you! Also if you click peoples names it displays their profile and you can see their activity there also!

Thanks Autismman, don't sound like s broken record at all! Hoping I can absorb some of the information and try to navigate this journey a bit better...

It's been quite encouraging to hear from so many members, I really was not sure what to expect - if anything. I think I resonate with the struggles and will try and find your post - I assume I can find it on introductions?

Also, Happy Chinese New Year man!

Hey there! It’s written a lot here so don’t want to sound like a broken record but I completely relate to what you are going through. There’s a great deal of helpful people here too just full of information. I’m of similar age and have struggled my entire life to fit in, it’s probably going to be a long wait for me on the NHS but haven’t a choice! I posted a similar story if you wanted to check that out, cheers!

I like the term self discovered! Still getting my head around it all - and really grateful for everyone's feedback and kind words today...

This definitely has the feel of a warm, safe and non judgemental environment - I am looking forward to being more involved (and thanks for the rating - it's my first lol) 

Hi and welcome. I'm a woman in my sixties and not officially diagnosed - we often refer to it as "self discovered" here. Everyone is welcome.

It will take time for you to understand yourself and learn how to structure your life to benefit you more, but just take your time and be kind to yourself. And ask us anything you want.

Thank you, you can ask your partner. Being on the spectrum would not affect my ability to get the citizenship because well, if I’m on the spectrum, it’s me my whole life. But having the official diagnosis could affect it negatively because of negative stereotypes, bias, maybe the officers would think that I’m gonna go unemployed soon and request  financial support etc although I have a history of being employed and being a hardworking employee. I work since I turned 15 because the situation at home was hard, I was absolutely scared and overwhelmed by all this but had to work during holidays to buy myself some clothes and books for school. It’s all complicated but I think I will get more clarity after my next appointment with my therapist, which I’m waiting for quite long time. Btw I’m female ;) 

Cheers man, thanks for such a detailed reply!

I have been doing therapy since last year, and changed at the end of last year to private session's. It has made the world of difference to me!

Good to hear you are working and not having too much of a headcase with work

Actually since I have started to accept I am probably on the spectrum I have had a major clear out in my life (home and garage!) Everything is much more orderd, simpler and feels a ton better - I think for a long time I wojld avoid certain thkngs because I was constantly in fight or fligjt mode and often ended up feeling like I just needed to collapse at the end of the day. 

Still feeling a bit stressed and overwhelmed by some things but this new realisation has definitely provided me with a buffer which is helping me look at things differently...

I'm kind of in a similar boat with family members, I have my partner and brother - but actually since I have started to ask myself questions about me being on the spectrum it has also crossed my mind that he might be too... everyone has a complicated background haha

I'm not a German expert, but I would be surprised if being on the spectrum would affect nationalisation... my partner is an immigration advisor (in the UK) I could ask her for you? Nit sure she would know the German situation off hand, but she may be able to point towards a few websites? Also in the UK we have something called citizens advice bureau - which provides free, independent legal advice... nit sure if any of that actually helps or not - but thought it might be worth sharing.

Your questions are good and not obvious. I have a therapy now. I manage relatively well and I’ve changed / managed a lot if severe issues from my past but still struggling. Yes, it’s also something like I question it if I would have gotten the diagnosis right now because I do have a job in fact I’m underemployed but I’m lucky to have a job that does not damage me mentally like previous ones. I identify with autistic experience not because I chose it, but because I have it and absolutely accidentally found out that the description of autism is a description of my life and things started making sense. I don’t know if I pursue the diagnosis or not, I’m gonna discuss it with my therapist who informed me he suspects me autistic, we gonna discuss many things from my past. Then we gonna decide. I’m also concerned that if I get diagnosed I would not get German citizenship, this is very important to me as I’ve been living and working for few years already. Another issue is me lacking a lot of my medical records and being unable to provide a family member input in the diagnostic process. So it’s all complicated. I wish you luck anyway. And I’m happy that I’m here. There is also some fear that if it turns out I’m not so much autistic to get dx, then I would lose my right to be the part of the community where I feel only here I belong and kind of fit. But if I basically could just go and get tested I would do it. Not to prove to my family or anything, just for me to know for sure what is “wrong” with me my whole life and I guess it could maybe help me in the future. Or maybe not idk. 

Thanks Alien! I struggle with social situations sometimes so hopefully this will be a good community to engage with..

Honestly I'm still quite new to a lot of this, and self realised autistic people is also a fairly new term for me.

Have you ever considered getting a formal diagnosis? Is it because you feel you manage quite well and you question whether a formal diagnosis per say would do or change anything or is there other reasons people would choose to self releate?

Sorry, I hope the questions are not too basic of obvious - and you don't mind me asking?

Hi, welcome to the community! There are more not diagnosed but self realized autistic people, including myself. This forum is our safe space for sharing thoughts experiences and creativity. I wish you find here connections and support 

Hi Bunny!

Thank you for this, very helpful - I only joined the community this morning and as mentioned this is very fresh for me, so not seen any of the links you sent. I will have a look through them.

It sounds like I may have more options with the NHS than I thought! Unfortunately I have been quite unwell with Crohn’s and Diverticulitis in the last 12 months - and at times I struggle a bit talking with my GP because of time limits I always feel a bit under pressure.

Because I have not raised concerns about autism with them before I have a slight sense (or fear) that this may be misunderstood or not taken seriously... perhaps I'm wrong! It just feels like a bit of a minefield...

Appreciate the welcome and hopefully speak to you again 

Thanks again! I didn't know about the ICB's in London and need to look into that...

And your name is sound lol - I chose X Force because it is a name I already use on a gaming platform and just decided to keep it simple...

Hi and welcome to the community!

Many of us here are "late realised" and/or "late diagnosed", so you're in good company! :)

If you haven't yet seen them, you might like to read through the various resources in the NAS's recently revamped diagnosis hub:

NAS - diagnosis hub

They cover all stages of the process, with each section containing several articles relating to that stage:

• Before diagnosis
• Assessment and diagnosis 
• After diagnosis 

For example, these articles (from "Before diagnosis") would perhaps make for a particularly timely read:

NAS - Signs that a child or adult may be autistic

NAS - How to request an autism assessment

As you live in England, you might like to consider requesting an assessment via Right to Choose (which enables access to private providers who might have shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS). This is discussed in the article above.

Some examples of Right to Choose providers are listed here, for example:

ADHD and ASD assessment – Right To Choose

Don't read too much into the username.  I could just as easily have picked 'underwhelmed' and justified it.  In fact, I am thinking of changing it, now I mention it !     I'll check the poetry out.  

Personally I'd go see your GP and ask for a referral.  The waiting list may not be as bad as all that in your area, and whether I like it or not, efforts are being made to reduce waiting lists by involving the private sector to triage people at various stages of the process.  And that's even before right-to-choose kicks in.  

The NHS has five different ICB's in London alone (Integrated Care Board's) who are responsible for the planning of health services within their areas.  Each has different priorities and criteria's.   However, the benefit of living in London is that you are never far from an alternative NHS provider under right-to-choose - and I say that with tongue in cheek. 

The Autism Spectrum Quotient test was first devised in 2001.  I guess you could say that it has stood the test of time, and whatever score you get on that can be taken as a rough indication that you are barking up the right tree, so to speak.  Perhaps with a +/- 5 margin of error factor.   

Thank you so much for such a detailed and thoughtful reply! It is gratefully appreciated.

Your sense about believing you are autistic and probably being so is pretty helpful!

In many ways I agree about tye NHS, I am just not sure I can wait for 2 years to get a better understanding - I have been through a lot in the last couple or years, including unfortunately being extremely unwell with Crohn’s and Diverticulitis. Which contributed to me starting the therapy...

If you have any suggestions on NHS pathways that would be helpful (I live in London).

I have taken several of the online tests recently, and last year, and they all seem to indicate autism or autistic traits...

Cheers overwhelmed! Hope you ain't actually too overwhelmed :) (if you like poetry I posted a second post just after this one with a poem I wrote a couple of weeks ago about internal struggles)

I've literally just finished replying to someone else who is in the same position.  Your story is very familiar.  Even in the few short days I've been posting in this place I've read versions of it countless times - and I must have read it hundreds of times over the years in other places before that. 

I've previously suggested it is akin to having a Eureka moment.  Something clicks, and perhaps for you it was your therapy sessions with someone who appears to have a similar mindset.  

I would always encourage anyone to go and get a formal diagnosis.  After all, the mere fact they are writing about their experience would indicate that there are issues unresolved, and some validation would be of benefit.   However, I do believe that you intrinsically know yourself best - and if you believe you are autistic then likely that is the case, assessment or not. 

There is an online test you could take, while you wait, known as the Autism Spectrum Quotient.  This measures autistic traits and gives an indication, not an evaluation.  It is self-administered. 

Here's the link to the test:   https://embrace-autism.com/autism-spectrum-quotient/

As you suggest, there are issues with the NHS in terms of the waiting lists, but I strongly believe we are best supporting its future by using it, rather than encouraging the private sector.  That is my personal standpoint of course.  It is certainly the case that waiting lists are long, and you do have the right to choose another provider (which sometimes is a non-NHS service) but my opinion persists - more so because the NHS would then be funding that private assessment.  However, that again is my opinion. 

Similarly to the last post I commented on, you make the point that you've had difficulty in connecting with those you work with, leading to masking and coping strategies.  One of the major benefits of having a formal diagnosis is that you could - in theory - wear that diagnosis - and say, politely or otherwise, that this is how you are, and others can like it or lump it, as the saying goes.  That feeling that you need to excuse yourself for the sake of social niceties doesn't need to be there anymore.  

I wish you good luck on your journey