Feeling Lost

Thank you so much for everyone's kind messages and advice. Very much appreciated

Ka1986 said:

If anyone has been through something similar or has any advice, I’d really appreciate it

There is lots of information here and elsewhere, and I haven’t any further advice other than to keep in mind that the autistic spectrum is diverse, and each person is like no other. I am in my 60s and I can tell you a bit about my journey which has some similarities to yours. 

I have struggled with enduring depression and anxiety since childhood, with multiple interventions from mental health services over the years. Last September, I began attending sessions of CBT at my GP’s practice.The therapist said I may have some autistic traits so they directed me to online screening tests. My emotions were rather unsettled - thoughts went from “I couldn’t possibly be autistic” to “definitely I am”. I repeated the screening tests several times over the next few weeks as I couldn’t decide whether I “slightly agreed” or “slightly disagreed” with some of the questions.

I didn’t know what to do for a few weeks, but eventually spoke to my GP who referred me for a NHS diagnosis. The waiting list was over four years long. The therapist (at the GPs surgery) and I discussed potentially seeking a private assessment and how I might feel if I received a diagnosis or not. In due course, it became clear that I wouldn’t ever be able to settle myself without seeking a diagnosis. I decided that the potential feelings (of despair at having paid for an assessment, plus disappointment) that might overwhelm me if I didn’t receive a diagnosis, would be worth enduring for what I thought would be a limited time. The potential benefits of a diagnosis would be worth the risk, for long term gain. 

I finally received my diagnosis last December. It was such a massive relief. The severe lack of self esteem is a work in progress, but it is improving. 

Please allow yourself space and time. Very best wishes.

Hi Ka1986 welcome to the community. It can be very overwhelming and it sounds like you have got a lot on your plate, some good advice and reading material from Bunny/Dorrmouse. Hope things become calmer and clearer for you

Ka1986 said:

I feel a bit overwhelmed—like I’ve been handed a lot of information to process when I’m already struggling.

You might need to trust (listen to) yourself on this aspect.  If you are feeling a bit overwhelmed it might mean you need to slow things down a bit (and give yourself plenty of time to think about and research the new things - but only at your own pace).  

You mentioned dealing with a mental health follow up and now you are trying to take onboard a lot of potentially relevant information about Autism / ADHD.  It is a lot to think about, and certainly so in combination with your mental health recovery journey.  It is good to pace yourself, rather than rush at trying to understand everything all at once.

(With the benefit of hindsight, that is what I wish I had been able to do when I was in a similar situation - instead of trying to juggle lots of new things at the same time).

The mental health practitioner lady was right to mention the possibility you might be Neurodivergent - I am confident she was trying to be helpful (and you may yet find out / decide that her idea was really, very, helpful and could help you navigate things more comfortably). 

What you don't need to do: is feel anyone is expecting / pressuring you to quickly understand everything (and then make your mind up about what you would like to do / explore next about Autism / ADHD).

How do you best like to learn about new information - what works best for you?  (e.g. would you prefer some ideas about Autism / ADHD via ...):

- eBooks,

- audio books,

- podcasts,

- videos,

- website links,

- video call groups of people / webinars.

For me, to slowly get more back on track, I found it useful to pick one topic at a time (ideally about something I found it felt like, or I suspected: "I have been doing things the difficult way", or "people don't usually seem to understand how difficult this thing is when I do my best", or "it is frustrating".  Then I looked up that one topic and asked people about that one topic.  Thought about what I discovered for a while.  Tried out a new way of handling a challenge .  Then moved on to the next topic. 

The hopeful news is: that there is a good chance (here on this community) some people will have potentially tackled something similar (helps you to feel heard) and be able to share hope that there might be a strategy / technique or reasonable adjustment to make things more appropriate to you (celebrating your strengths and better supporting your struggles).

To feel less lost is a good goal (we now know you too).  More than that, if the lady turns out to have been correct: gradually, your new knowledge about Autism / ADHD might help you to know more about yourself, why some things are a challenge, what tactics might better suit you, and how people / organisations can better support you to navigate them / their services.

If, along the way, you come to feel that assessment / diagnosis around Autism / ADHD might be right for you - there are plenty of people here with lived experience to share about those pathway options.

Welcome, and best wishes.

You're most welcome!

Thank you so much. I will take a look at the information you have provided.

For information about getting assessed for ADHD, you might find this site helpful:

ADHD UK - Diagnosis pathways for Adult ADHD

Ka1986 said:

Now, I’m not sure what my next steps should be.

Hi K and welcome to the community!

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

For a general introduction to the various aspects of autism, along with links to learn more about both the types of difficulties we can experience, and some strategies that we can use to help us cope better, I'd suggest starting here:

NAS - What is autism?

In respect of seeking a formal diagnosis, I'd suggest reading through the resources in the NAS's recently revamped 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") might be particularly helpful at this point:

NAS - Signs that a child or adult may be autistic

NAS - How to request an autism assessment

For those living in England, the second article includes information about Right to Choose, which enables access to private assessment providers who might have shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS.

The NAS articles include links to some screening questionnaires that you might like to complete, to get a better idea of whether your suspicions might be correct. However, you might prefer to use the website below for this. It includes some very useful commentary for each questionnaire, and enables them to be completed online (with scores calculated for you), saved as PDFs and - if the results support your suspicions and you decide to seek a formal diagnosis - printed off to take with you to the GP.

The AQ-10 or AQ-50 seem to be the most frequently used / required by GPs in support of NHS referrals. (RAADS-R might also be helpful, although some recent research has thrown doubt on its validity as a screening tool):

Embrace Autism - screening tests