Newly Assessed - Any advice?

Yes indeed, and thank you for doing what I should have - explaining the acronyms. 

martintheactor said:

My pre-assessment understanding was that yes, the UK and NHS should be using the ICD which doesn't use levels, but what I've seen from GPs and indeed this psychaitrist is the 'levels' from the DSM.

That's made things a bit clearer for me, so thanks.

For anyone who doesn't know (as I didn't) the ICD is the International Classification of Diseases (World Health Org) and the DSM is the Diagnostic Statistical Manual of Mental Disorders (US+).

Thank you for the explanation.

martintheactor said:

For me, just knowing that yes I am not just showing traits, but very definitely meet the criteria for Autism is what I was hoping for.

Yes, I remember that feeling well 

It can make sense of a whole life.

I was diagnosed at 60, 2+ years ago.

My pre-assessment understanding was that yes, the UK and NHS should be using the ICD which doesn't use levels, but what I've seen from GPs and indeed this psychaitrist is the 'levels' from the DSM. Levels were only mentioned however after my mother (who was in on the video call, and has an archaic understanding of ASD, asked about high vs low functioning). So it might be possible that he was trying to explain where he felt I sit on the spectrum to my mother? I think it was an attempt at explaining the differences in levels of support potentially needed by each type?

I don't know for sure, and don't yet have the paperwork. I'm just working with what I've got. For me, just knowing that yes I am not just showing traits, but very definitely meet the criteria for Autism is what I was hoping for.

Welcome

martintheactor said:

The psychiatrist has said I am Level 2 Autistic.

Is this your diagnosis?

I found it curious as it's my undestanding that 'autism spectrum disorder' is what the diagnosis is now and that levels are no longer in use.

I think that the levels are still used in some other countries though.

That is reassuring, though I had a weird mess up by the GP where the RTC stuff went through (obviously), but Countess of Chester Adult Autism service sent a letter back in June this year (a year after RTC was put through) saying they couldn't accept a referral. 

For that reason prepping myself for GP-induced silliness. At least that way if I'm wrong there's no problem. If I'm right I've prepared for it.

martintheactor said:

I have also heard some horror stories from folks saying private diagnoses have been ignored by GPs so am hoping that this won't be the case with RTC, but am somewhat trying to prepare myself 'just in case'.

Just to reassure you, that shouldn't be an issue at all under RTC, which only allows assessments to be carried out by qualifying providers.

Thank you 

I'm sure I'll manage the return when it happens. I've been with the same employer c.20 years and have been through similar experiences with them before. I have bipolar as well and that's caused a few ups and downs (joke!)

I look at job descriptions as a company's "wishlist". There will be some "hard stop" requirements, in my work that's usually professional qualifications or familiarity with certain computer systems. Certainly my co. are terrible at spelling out what's really necessary versus what would be ideal. There is also the possibility that they will take a "X is as good as Y" without spelling that out. Basically if you take it literally then you may miss an opportunity.

That might just be my company, but I've been incredibly frustrated when trying to write job profiles and having more and more additions/edits away from what we actually *need* towards what would be *ideal* but putting the "ideal" stuff into the "essential" section. Dunno if that's me being too literal, or them being too vague/duplicitous. 

Good luck anyway 

Glad to know I'm not alone!

I've been self-employed for so much of my life, and now having been out of work for a while I'm very nervous about getting back to work. I've been getting so frustrated at forms that don't consider self-employment when asking about work history. Or, the mental block when the job spec lists a minimum set of requirements that I don't meet, but I'm being advised to apply anyway 'just on the off chance'. Like if it's the minimum why and how could a company ever accept less than that? I'm still sort of trying to work out now is that an Autism thing, or is that just silly HR and recruitment? I feel like that sort of literal thinking might be one of those things that now has an explaination...then the imposter thing kicks in and I wonder am I speaking too soon?

I really hope your journey back to work, whenever you choose to start on it is nice and stress free!

Just to say that I heavily relate to your comments about "imposter syndrome" and not wanting to "water down" other people's experiences. That is 100% exactly how I felt over the years before I had a diagnosis. I only opted to go for assessment after a mental health crisis psychiatrist told me he thought I had "significant traits of autism". It was like I'd been given permission to take myself seriously at last.

I'm waiting for my full report and was promised a separate "suggested adjustments" letter for work, which will be interesting. As I'm definitely dealing with a serious burnout situation (both autistic and occupational burnout probably) I'm taking it slowly and attempting to concentrate mainly/solely on my current day-to-day needs. Im trying not to start planning or stressing about the inevitable "return to work" that will have to happen at some point until my every day functioning starts to recover. 

Good luck with whatever you decide to do, which may be different to me but will be equally valid 

Yes, I did read the form letter asking for the support/care plan here on the NAS website. Sadly, when looking at what 'support' options are available locally there doesn't actually seem to be all that much available. I'm also sadly quite used to advocating for myself with GPs. I've had no end of trouble trying to communicate with them over depression and joint/back pain issues. 

I have also heard some horror stories from folks saying private diagnoses have been ignored by GPs so am hoping that this won't be the case with RTC, but am somewhat trying to prepare myself 'just in case'.

martintheactor said:

Part of me feels like I need to be patient. Like will the report the psychaitrist write detail areas I can look to improve on.

From my and others' experiences of being assessed and diagnosed by private providers (whether directly as a private patient or via Right to Choose (RTC)), I should flag that ongoing support beyond the point of diagnosis might not be offered as seamlessly as it should be - or sometimes even at all - compared to the NHS pathway. So, just by way of warning, it might be the case that you will need to take a more active role than you might expect in ensuring that you receive the further support that you're entitled to. 

My own report from Psychiatry UK focused mainly on explaining how I met the ASD diagnostic criteria. As they were acting only as an assessment provider (in my case, via RTC), that's where their responsibility ended.

In terms of what to do next, my own report also included:

- Actions for my GP to follow up on (including arranging: therapy, occupational therapy, a psychosocial needs assessment and interventions, and different medications for my mental health conditions). In my case, only one of those follow-up actions was actioned automatically by my GP.

- A final couple of pages of advice for me (I suspect that this is a standard, non-personalised addendum, so will be the same for you).

Per NICE guidelines, you are also entitled to a personal support / care plan, which you may need to request (eg via your GP). This is explained here:

NAS -  What formal support is available following an autism diagnosis?

In addition to reading the NAS's resources and the other book that I recommended below, in respect of starting to make changes to better support myself, I found this book helpful:

Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

Thanks for this, and thanks for the book recommendation. Will pick it up when I next get paid. Thanks!

Hi Martin and welcome to the community!

During the period following a diagnosis, it can be common for us - especially as late-diagnosed adults - to experience a lot of emotional dysregulation. Besides feeling relief about getting our diagnosis, this can also include working through a phase where we experience (backward-focused) anger, frustration, grieving and more. So please don't worry if you experience this - it's normal! 

The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

NAS - How you might feel after a diagnosis

NAS - Other advice covering post-diagnosis including:

• Talking about and disclosing your autism diagnosis
• Emotional support for family members after a diagnosis
• Formal support following an autism diagnosis
• What can I do if formal support is not offered or is not enough

NAS - Autistic fatigue and burnout

In terms of what to do next, my advice at this point (ie soon after your diagnosis) would be to try and give yourself some time and breathing space to process and absorb everything that you've been through, and let your feelings settle down.

For me, as for many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a conclusion full of ready-made solutions for my various difficulties.  

Therapy is often recommended after a diagnosis (including by Psychiatry UK, who also diagnosed me) as a follow up action for your GP to arrange. You might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful, myself included:

The Autistic Survival Guide to Therapy

I think that the imposter syndrome thing is what prevented me from saying, or even posting here. Like without the 'official' diagnosis I would somehow be watering down the experience of others who were 'properly' autistic or something. I get that it's all still a little new, but I think I've been left trying to take stock of what it means. Am I 'supposed' to be reveiwing past history for all the things I can now identify as having been miscommunications because autistic? Am I 'supposed' to tell everyone? In reality nothing has actually changed I guess. I'm the same person I was before the diagnosis, but I think the what comes next bit is what I can't figure out.

Part of me feels like I need to be patient. Like will the report the psychaitrist write detail areas I can look to improve on. He was pretty categorical that my bluntness and proclivity to cut through the waffle and obfuscations that people put into their daily communications will likely hamper my ability to communicate with others. Do I now seek out ways to better cope with that? It feels a bit like university - I've learnt something, but then there are now so many unknowns out there that I don't know...

Thankfully, I've worked within education for a long time and so the information side of things is something I'm good on. I read academic research as a way to unwind. I think similar to what you mention - I've always been able to communication with other autistic or ADHD folks with greater ease than neurotypical folks. 

Hello and welcome to the community! 
Congratulations on your diagnosis. It’s a lot to process, especially after waiting so long, but it’s great that you’re doing the right thing by learning more about autism and how your brain works. Being part of this forum and learning from others is definitely a great start!

My advice would be to take your time to process this at your own pace, there’s no rush. It has taken me about a year to start to accept my diagnosis and deal with the imposter syndrome (although it hasn’t completely gone). 

Connecting with others who’ve had similar experiences can be really helpful. I have found watching YouTube videos from autistic people really helpful too. And just be kind to yourself. This diagnosis is just a way to better understand and support yourself moving forward.

You’re definitely not odd, you’re uniquely you, and you’re not alone in this.

Hi! Good to have you here and congratulations on your diagnosis, this can be a really good thing to happen. I’m not officially diagnosed and fairly young so I’m gonna keep this short and leave you to read advice from people that might know a bit more about the situation you’re in.

One common thing for autistic folks is the need for information about how something works. A lot of research, reading, thinking and watching helped me to come to the conclusion that yes, I might be autistic. That realisation allowed me to understand myself a bit better and to work out my needs. I am now trying to implement accommodations in my life (like allowing myself to wear noise cancelling headphones and sunglasses in situations where I might get a weird look or two for it). It also helps me with trying to be a bit more patient with myself. 
Talking to other autistic people has also proven itself to be helpful (for example through posting on here).