Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #18

[PolterThreadStarter]

As usual, latest support thread.

Welcome

Hi,
I'm thinking of seeking a private assessment for autism via Action for Aspergers or another organisation.

Has anyone done this, any feedback?

An 'academic' diagnosis would be sufficient (as long as I trust it!) because it's not for official purposes.

I tried to get an nhs referral but not funded in my area.

I've just read through the thread properly and totally concur with the flying frog book - really WTF? As I was doing the tests, e.g. making up a story with the tiny props, I was conscious that I was being completely literal with them, unlike the nurse who had turned them into different things (pretended glasses were a boat etc) but I just couldn't stop myself. I had a chat with someone at work who is a self-diagnosed Aspie and we discussed the strain of masking for so much of our lives (we're both late 30s/early 40s) it is completely exhausting. I can really relate to so much of what I read on here, particularly about seeing other people's friendship groups and never understanding why that couldn't be my life. I wonder if I had known 20 yrs ago whether I would have had an easier time of things.

Hi, joining as I'm awaiting outcome of ASD assessment. I got a letter that doesn't tell me the result just makes another appointment! Argh, think that indicates positive though.

I'm also sick of the mental health system, specifically the CMHT's endless excuses for refusing to provide therapy. Or, you know, anything at all. Completely agree with the stuff said here about BPD diagnosis. (Guess what I'm diagnosed with... and with a brother with obvious but undiagnosed ASD.) I also wonder if it's worse for a female aspie to have a brother with ASD as so much attention is given to making things ok for the DS, that the DD is just expected to crack on with things and "be good". Possibly even a scapegoating dynamic might develop.

I also thought the frog book was weird... I quite liked it because the illustrations were kind of eerily magical, and if it was my own book (now or as a child) I'd have spent ages examining the illustrations and made up a convincing story to go with it, without needing to be asked. But being asked to do that in front of someone else, without being able to see the whole book first, is completely different! I almost bottled it and refused. So not sure where I stand on the creativity front, or whatever it's measuring!

Hi. I'm new to this thread. I had my ASD assessment today, and the conclusion was that I am on the spectrum. Although I suspected it (hence the referral) I am struggling to process it. I'm not quite sure what to DO. And do I do anything, or do I just carry on as I did before?

Congratulations on your dx.

Sorry no-one's replied, I'm NT but adult dd has ASC, recently dxd but no surprise.

There isn't any automatic support IRL for adults post-dx, everyone is left to deal with it on their own which as you know can be quite difficult. Here's dd's opinion.

On the surface, you know who you are, the dx has not changed that, you are still you, but you may find that even though you expected to receive the dx, you feel as though it's a huge shock to the system and that's hard to understand.

It is a struggle to process it, dd needed much more rigid routines than usual for weeks afterwards because her anxiety rocketed and she needed routine to feel grounded. Gradually the intense anxiety eased to her usual anxiety levels and she feels comfortable with it now, (so far) so hang in there and give yourself time to process the news however you need to.

Once you're comfortable with it think of ways it can be an advantage for you. If you work you can ask for reasonable adjustments.

Think about who to disclose it to, NT friends and family can be really negative and say things like Oh how awful, that's terrible etc. which isn't the reaction you want or hope for. So if you want to let them know, have some positive info about autism to let them read through.
The Mac and Windows analogy is very helpful for anyone who needs to get their heads out of NT= right and Autism= wrong to understand the 'same but different'

Hopefully it should give you more confidence to be yourself and to express yourself.

Thanks blank and blankDD.

I'll give myself some time to process it. And not 'do' anything until things have settled in my mind.

I keep looking at my DC and worrying how much of 'me' they've inherited. I do see some traits (DS, for example, has sensory issues with clothes) but I don't think they're on the spectrum. But I'm not an expert and I'm worried that I'm missing something. I'm not sure whether to tell the school so they can keep their eyes on things.

Hi everyone. I got my official diagnosis today - the assessors are apparently very confident that I meet the criteria for ASC. It’s actually a relief.

NcHawk - I have three children and one is severely autistic. The middle child is most likely NT and I’m pretty sure dd3 is on the spectrum. She’s now 8. It’s very subtle especially if there’s no learning difficulty. But I can see she’s anxious and very obsessive - she reminds me very much of myself at that age. But because she’s quite extrovert people think she seems ‘normal’. Although that’s people in my family. It’s worth bearing in mind that if you’re in a family of ND people that will seem normal anyway.

You're welcome, it's more of a Big Thing than folks think it's going to be, isn't it?

You're probably better asking directly on SNChat www.mumsnet.com/Talk/special_needs_chat

for advice on how schools in your general area "notice" any needs that could have interventions in the classroom and/or how to go about either OT or Paed/Ed Psych referral for your dc.

Good Luck

Congrats on your dx Lottie

Thank you!

Just popping in to say hi and get this back into I'm On. It fell off during the part where they changed it all to hidden subjects disappearing!

No news to add.

Hello, and thank you to the person who recommended this thread to me.
[waves upthread]

Never had a diagnosis, but I do score splendidly well on empathizing and systemizing tests. Why this is all on my mind - my manager has been complaining about my social skills, and has a perception that I'm really very chummy with the women's association at work, but not with my own department. I'm not very close to my own department in some ways, but I think we'd all find it very disturbing if I ran in every morning to give them all a hug, so I'm not quite sure what he's expecting. The others aren't so different, either, as far as I can tell, but they are all men, which I think is part of the issue. I also don't think his perception is right, anyway - I am the one who tends to slip out quietly of the back of room while everyone else is chatting, rather than being at the heart of it all.

I do struggle with the social side of things, always have, ever since I was little, but I get by, and I make sure I sometimes do things I am not comfortable with, because I know if I don't, I would probably end up very isolated, and I don't really have a local network as friends as it is (nationally and internationally, with the help of the internet, I do very well.) And in any case, I am a unix sys admin - I am no worse socially than most of my colleagues, and better than many. The systemizing side of things is what makes us good at his work. Also he acknowledged I am probably the best in the department at making sure people are aware of things like updated procedures, new documentation, outages they need to know about and so on. So my work is fine, including the communication side of it. But I still feel a bit under attack, which of course means I would rather hide than have to speak to him again. Also, we have been to HR about this earlier in the year, and they were quite clear that I am under no obligation to talk about what I do outside of work, and I am entitled to a private life (one of the complaints is I never talk about what I did at the weekend; no one's asked, if they're really that interested in hearing about the housework and supermarket... You could argue I'm being considerate, not boring them to death.)

Anyway... I was wondering about getting a formal diagnosis, but I realise my main motivation would be as a way of telling him to back off. OTOH, the thought of him making allowances for me also makes me cringe, because he'd probably try to hard, and what I really want is for things just to be normal, rather than him perceiving things which aren't there. I don't think a formal diagnosis would necessarily be of help to me per se, because I already have an understanding how it affects my life (lack of relationships, social awkwardness and the like,) and over 40-odd years, I've learnt to live with it mostly.

So would there be a benefit to me to try and get a formal diagnosis?

Hi Ebear. I think a diagnosis can really help because your employer then has to make reasonable adjustments for you. In my case I’ve had my mental health badly managed. I’ve been wrongly diagnosed with BPD and bipolar disorder. Neither of which fit. My assessors feel that I should apply for PIP but I know it will be a struggle to get it as I have a high IQ. But I’m 37 years old and need my mum all the time ...

But what reasonable adjustments would they need to make, other than backing off from unspecified levels of social interaction which are not interfering with my work itself?

I live alone, and cope fine with all that. My actual work is fine - it's acknowledged I am the most productive in the team. It's just my manager has this bee in his bonnet. There's part of me thinks that sticking a diagnosis under his nose would be a way of saying, "I officially can't be expected to do this social stuff at the levels you expect," but it could also bring as many problems as it resolves, "oh, we can't expect her to do that, " and so on - my dev plan includes a request to get more supervisory experience, for example. Though that appears to be getting ignored anyway.

Well yes I guess there are disadvantages too. In my case I just feel I need to know who I am. Whether I have the label or not I’m still the same person. But then, I’m not even very good at masking tbh.

I have read through some of this thread (& changed my username as haven't discussed this with people I know in real life who I think would know me from stuff I've posted on MN). I have always felt 'weird', never really known why - I thought I was shy, introverted, etc but actually I'm not really. I've always had the feeling that I was pretending to be normal. My sister's hinted before that she thinks I have Asperger's because I'm obsessive about things that interest me and also because of how I decode people, e.g. something like "I know this person is sad because they're crying, their mouth is turned down, their shoulders are rounded" - I feel like I've learned a load of clues and I have to run through checklists all the time rather than just understanding a situation. It's only fairly recently that I've realised that this isn't how everyone deals with social interactions. I've also read that women especially can mask autism by learning how they are expected to behave & that feels so much like me, but it's a huge stress having to do that all the time.

A couple of years ago I read The Essential Difference by Simon Baron Cohen and did the quizzes in the back & then put it to the back of my mind as it all got a bit overwhelming. More recently I've done loads of online quizzes for Asperger's and ADD and always get scores suggesting a high likelihood of both. I am tactless, can't ever seem to get organised, get stressed around chaos, noise, social situations and just about all of the things that would be in a list of ADD and Asperger's symptoms. Descriptions of both conditions also sound just like my dad and uncle too (both now dead).

So what I'm interested to know is whether it's worth discussing this with my GP - are there ways to get diagnosed on the NHS as an adult? I don't feel like I'd need special services, more that it would be an incredible relief if someone could say to me officially "this is why you are the way you are".I did try once before to raise it with a locum GP (was seeing her about something else) but it turned into a discussion about depression and anxiety and I didn't feel like she understood. I think a diagnosis would help other people to understand that I'm not really rude/unfriendly/embarrassing/awkward. But I imagine GPs might think it's unnecessary to refer me to anyone if I've got to my late 40s without needing a diagnosis. What have other people's experiences been? Do I have any right to be assessed on the NHS?

dd is adult and needed an NHS assessment for autism and a host of related comorbids as proof of disability. Some organisations won't accept anything less than NHS dx in her circumstances

It depends on your area as to how long it takes for an NHS dx. After an initial GP visit, then referral, then quick gateway appt to say no MH issues (otherwise there's no further pathway to NHS dx), we waited the "probable time" of 18 months with no notification. I rang to enquire how long it may take and we were offered a cancellation with 3 days notice, we took it and she was assessed, autism dx was a week or so later. This was very recent.

I later found out that NHS waiting times for this person to assess are so long because she only does NHS work 1 day per week.
In our circumstances, if I'd known, I could have asked for the same person and paid her to assess privately and because they are also an NHS professional, the dx would have been acceptable for the bodies we need to prove dd's disabilities to.

However, your circumstances are very different. If you need an NHS dx, the waiting times can feel like an eternity, but you may find someone who does both private and NHS work would suit your own standard for validation and you should be seen fairly soon if you saw that person as a private patient.

Otherwise, if you read through a few threads on here, there are a lot of different ways you can be dxd which are non-NHS but no less valid Most employers for example do not ask for NHS dx but would still accept the dx and provide reasonable adjustments.

I think everyone has the right to be assessed on the NHS, it's just a question of passing the MH gateway (sounds like that's what your locum was talking about) then it can be a very long wait for reasons described above, depending on which area you are in.

Good Luck on whichever route you choose.

Thanks blanklook, that makes it much clearer. I don't need a diagnosis to show employers, etc so maybe should look into going private. It doesn't really affect my job much (although I upset a colleague today by saying something blunt and tactless, so it would help with situations like that), but the diagnosis would be more for making sense of everything for myself and family.

I think I need to read through more threads on here to get a better feel for what is available. I will try and pluck up courage to speak to GP again - that's an interesting point about why the locum raised mental health issues, I just thought at the time that she had not really understood or listened.

Thank you for answering and explaining the system.

My parents have always been quite unkind to me about the difficulties I have and basically told me I was useless and it was my fault or I have deliberately failed in some way. I think they feel bad about that now I have a diagnosis. I wish I had known as a child - my life would have been easier.

My assessor thinks I should get PIP. Do any of you get it? I expect I would have to appeal to get it given how stupid the assessment criteria now is...

You're welcome idea888 that's what it's like in our area, yours may vary. The whole assessment process is different all over the country as far as I can see by reading other peoples' accounts of their dx.

Lottie There's loads of help online. www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

You have to have a face to face assessment with either ATOS or Capita, I'd strongly advise if you have an advocacy agency nearby to ask them for someone to come with you and record the whole thing.

Apparently there are also PIP Facebook Support Groups in all areas who advise people, we don't have FB, so I've no idea.

Thank you blanklook :)

Hi there. Haven’t posted in a bit.
I’ve been in contact with Lorna Wing, emphasising that I/my family are willing to pay privately, and I’m on a waiting list. Which is apparently six months. So the earliest I could be seen is next April, which is a PITA to be honest. It also appears to be a lot more expensive than we thought. I was sent an email with the cost, but the next day I had another email saying that that email (from previous day quoting the cost) was to be ignored as they’d meant to email my GP for funding. I had to reiterate that I was self-funding although I reckon it’ll still cost the same.
I also have anxiety issues, although I’m not sure that it’s enough for GAD. I don’t really get physical symptoms, I just shut down mentally. I’m also fairly sure I have some kind of dysthymia/persistent depressive disorder, so not as serious as clinical depression but still there. I’ve been thinking of seeing some kind of therapist but I’m not sure how that’ll work with the ASD/not having a diagnosis.

Hi toffee, I think you could work on the depressive feelings to a certain extent whilst awaiting an assessment but it would probably be limited in scope & effectiveness. This is based on my own experience that is sort of opposite to yours: I eventually sought help after decades of feeling not right when I read about dysthymia (on MN!) as it seemed the nearest thing that described how I felt. A psychiatrist convinced me to try ADs to improve my day-to-day mood & thankfully that worked & still works.

I was recommended talking therapy after I had been on the ADs for long enough to bring me up to a level where I would be receptive to the potential benefits & during this my therapist suggested I may have HFA/Aspergers. Struggling with it for so long may be responsible for the depressive feelings, not surprisingly.I also realised I had anxiety; it wasn't the breathlessness/sweaty hands stuff - I just seem to clamp down physically & mentally.

So now I am too going for an assessment to determine either way as it will make any further counselling/CBT more effective knowing what we are or aren't dealing with, rather than an unknown possibility. However, during the counselling I did try some CBT techniques & have improved in some areas, eg school run is now not an epic nightmare for me. So it may be possible to address some issues if you are desperate to start & it would also be worth investigating meds if you haven't done so before.

Idle - I agree that ADs can help you engage with therapy. ADs are very beneficial for me - I’ve been on mine for about 2 years. I’ve also had about 2 years of talking therapy which really helped. The only problem was that I found it difficult to describe my feelings because I have Alexithymia.