Psychiatrist suggested autism before I did

[JaggedLittleKrill]

I had an appointment with a perinatal psychiatrist today about my PND. This is my second appointment with her. Towards the end she very tactfully and carefully asked if I'd ever considered that I may be "on the autistic spectrum" (her words) and that she thought I may be from the first time she met me. I said that actually, yes, I have wondered (more about ADHD really but also being ND in general somehow). She asked my permission to make a referral for an autism assessment and I said I would be so, so grateful if she would.

I'm now feeling very emotional about it. I'm thinking back over my life (I am in my 40s) and I just want to cuddle little childhood me. I also wish I could talk to the family members who I'm most like (and suspect are autistic, too) but they are all dead (parents generation, autism never mentioned or looked into). I would one hundred percent welcome a diagnosis but I'm scared of getting the assessment "wrong" and not being "different" enough. Does this make sense? I'm also scared for my daughter who is starting school soon because I can see so much of myself in her and I had a horrendous time at school apart from academically doing very well. I don't want her to struggle. I don't want this struggle for her.

Sorry for long post. This is so new and scary but also I feel a lightness at being "seen" like this by the psychiatrist for the first time (have been under various MH services since a teen). I am so conflicted.

Can anyone shed any light on what I may be able to expect from an autism assessment? I've read they like to speak to your parents but my remaining one won't want to be involved in it as there's no way they'll believe I could be autistic (very old fashioned views on such things) and it would upset them a lot anyway.

Thanks for reading if you were able to get this far!

That sounds frustrating. I think I really relate to your sense of fixation. The uncertainly of situations like this puts me really on edge. I hope you get some answers soon.

Ah I'm sorry you relate, it's a rubbish feeling, isn't it?! I've an appointment with my care Coordinator this week so will ask her what's going on but all she can do is pass it on to the psychiatrist. They keep telling me how much I've got on my plate and how well I'm coping etc etc and I'm just feeling like, "Yeah, I know, I'm living it and you're making it harder for me!" But she is very nice so I won't be a moaner or anything but I don't know what else to do apart from pay money I don't have spare for a private assessment that my employer (irony alert: the NHS) is unlikely to accept. Grr.

I actually don’t understand that whole “you’re coping so well” thing. I’ve had that a few times lately too. I’m not sure what they mean by that or what’s the point in saying it!

I hope your Care Coordinator can keep chasing this. Or hopefully you hear something back regardless. I’m trying to imagine how exactly your referral could get lost or if processes really are just that slow or what!

I suppose it means that I don't meet their criteria for inpatient treatment, or I'm not an immediate danger to myself or others. The bar is so low for "coping well", it's on the floor 😂

I know, it goes against every fibre of my being to not keep asking people "why?" and cause a polite but very insistent fuss to get the processes and procedures investigated...my innate craving to properly understand the 'how' and 'why' of things/processes is horribly uncomfortable for me & orhers when I'm constantly met with brick walls, especially when it's part of my day job to sort stuff out. Argh!

My husband jokes (good naturedly) that my reaction to this situation alone should be enough to diagnosis me lol (he is just joking and is very respectful of the situation).

Finally confirmed the referral! No appointment date yet but I felt a wave of relief when they confirmed it. But now I'm having a panic because I feel like I'm not going to "pass" and will be found to be a malingerer or a fraud, someone who's spent too much time online and have convinced myself I've 'got something' I've no right to. This is a horrible, scary feeling.

When they say "fascinated by numbers/number plates", what do they mean by fascinated?? How do I know what's "more" or "less" about the things I think, like and do compared to other people? I don't understand what The Norm is because I'm in my own head so everything is just normal to me...?? I know 100% I fit the criteria for having huge problems with social, communication & relationships stuff that have massive detrimental impacts on my life since forever...but the other stuff I don't understand how to measure it? I can be quite precise about language (for official stuff mainly, not necessarily on social media like) so the wording of the questions I've seen online is making me really anxious because I don't know what their (the professionals') definitions are of these words. Argh. Going to stop posting now because I'm spiralling and not making sense. Night, all xxx

Glad the referral is confirmed!

As for the questions, I agree they are ambiguous and difficult to answer!

So, another update... the AQ10 arrived in the post and I completed and sent it back the same day lol. I scored 10. There were also narrative sections asking about how my life is impacted day to day, how I think a diagnosis would help me, etc. I wrote (scribbled!) a LOT and I took it out of the envelope and added more about 3 times lol. So now I wait to find out where I am on the waiting list. I feel nervous and excited, like I've sent off a job application or uni essay. Very weird feeling.

I've been told today that the waiting list is still 2-3 years despite my "fast track" status. I feel physically sick.

Sorry to see this update @JaggedLittleKrill That is so frustrating, unfair, frightening and everything in between!

Apologies if this was discussed previously but are you in England and is there therefore a chance that Right to Choose would apply in your case? I know you mentioned that private diagnosis wouldn’t be accepted by your employer but I guess that wouldn’t apply to a diagnosis contracted from a designated NHS provider under RTC? Apologies if I’ve missed something and if this doesn’t work. I just thought I would mention just in case.

Thank you, I'll look into that as it hadn't occurred to me. The irony is of course that the NHS is using the same private providers to attempt to meet demand

Unfortunately it looks like RTC can't apply in my case as I'm already under a provider

Well that is hugely frustrating. I’m sorry that suggestion didn’t pan out.

It was worth looking into though, so thank you for suggesting it

Feel despondent about things today. I and my care co have made calls & sent emails to find out the waiting time because I need it in writing for my occupational health, but no one has responded. There's either no reply or they'll pass it on to someone who doesn't reply. I don't want to jump the queue, I just need the waiting time in writing. I feel a mess because I'm now convinced that I'm not autistic and am just wasting everyone's time and am just weak, lazy and selfish. I feel silly for even thinking I could claim something I've no right to and I'm ashamed I've tried to appropriate a diagnosis that isn't mine. I'm really sorry.

Sorry you are feeling that way. I think in your case it sounds like it’s really important to get the assessment one way or another - whether autism is ruled in or out this truly wouldn’t be a waste of anyone’s time. It’s really unfortunate that you are having difficulty with services not responding. That’s not your fault but it’s leaving you feeling bad unnecessarily. It’s totally ok that you want answers.

Thank you. I don't know what else I can do now. If they won't even respond to me, I can't force them to, I'm powerless. Can I contact the Ombudsman in this instance as the Trust has contravened their own complaints procedure and timescales? My MP is a Tory and a Johnson/Truss loyalist at that, so I can't imagine he'd care or be sympathetic in any way! And I wouldn't want to discuss this sort of thing with him.

I feel like I'm losing my mind. I don't know which way us up.

It will have an enormous, negative impact on my mental health if I let myself wait for 2 years. The least worst option for me, knowing how my mind works, is to withdraw from the whole thing and put it behind me. Everyone on this board has been kind, interesting and supportive. I will miss it!