A new Neurodiversity support thread for those with suspected or diagnosed ASD, ADHD and other NDs

[PigPigTrotters]

Yet another thread for neurodivergent mumsnetters.

Lots of links in old threads.

Anyone is welcome, it's not just about autism.

Muther, your description: I can deal with pain by totally shutting down and going in on myself is exactly how I describe it. I think I actually have quite a low pain threshold and will perhaps over-react to some pain but when it comes to really bad pain (childbirth, getting a tattoo etc.) I definitely just retreat into myself and shut down to deal with it.

I also wasn't believed with my first labour in terms of how far along I was. It all progressed a little faster than usual from my waters breaking to being in full labour and when I got to the hospital I was all quiet (except for throwing up every once in a while) and they seemed convinced they'd be sending me home and were surprised when they actually checked me and realised they'd need a delivery room.

Polter, I also hate hospitals and had a bad experience the first time round (just with them pressuring me to give DS1 formula instead of helping me with BFing). I hated the fact the MWs were constantly opening the curtains round my bed when I wanted them shut and the whole thing just felt so stressful. I also hated the fact they take so long from saying you can leave to actually discharging you.

Unfortunately, after the home birth with DS2 we were rushed to hospital anyway because his breathing was a bit snuffly. He was pretty much fine by the time we got there but the trip had brought his body temperature right down so we had to stay in overnight.

Hello again everyone,
Just managed to get to the end of this thread for now! Seems like everyone is very chatty at the moment, at this rate we'll be onto the next thread next week!
Still agreeing with a lot of what I'm reading, it's so nice to find people who feel the same way.
Also hate hospitals! Best labour was with dd2 as dd1's community midwife happened to be doing a shift on labour ward so I wasn't having to deal with a stranger. I just sat on the visitor's chair throughout labour trying to tune out the radio (which was, ironically, comparing man flu to childbirth!), then mw put mattress on the floor for me to deliver onto. Was so easy, and so quiet (apart from the radio). dd1's birth was stressful as it took so long and she didn't breathe initially (she proceeded to be a breath-holder until she was at least 6 years old!). ds''s birth wasn't too nice either as the mw didn't seem to know what she was doing and "lost" his heartbeat (because he was on his way out so his heart was no longer above my pelvis and she didn't realise this!!). She left to give us some bonding time and by the time she came back I'd showered and, got dressed and dh had got ds dressed so we were ready to leave. She was not prepared for walking back into the room to find us just waiting to go home and bond in peace!
One reason I ended up going down the route of getting a diagnosis is because when I was taken to A&E last year, my friend was only allowed to stay with me because she told them I was autistic. I realised then that it needed to be in my medical notes, because other unit managers might actually check my notes and not let an advocate stay with me if it wasn't on there.

I realised then that it needed to be in my medical notes, because other unit managers might actually check my notes and not let an advocate stay with me if it wasn't on there.

That's a very good point. I keep questioning whether I really need a diagnosis or whether it will just be time/money wasted and a lot of stress for something that won't make a difference but that's a really good example of how a diagnosis could be practical and helpful.

BDH, I've known for well over a decade that I "probably" had ASD, so it wasn't something I rushed into. However, with the autism law that came in a few years ago it now makes sense if you ever think you might need "reasonable adjustments" made because of it - you still get a choice and control over who you tell (apart from those who can read your medical notes obviously). GP surgeries no longer have to pay for ASD diagnosis referrals and in the end it wasn't nearly as stressful as I thought it would be - the assessment centre clearly knew how to make things as comfortable and relaxed as possible for those on the spectrum (not surprisingly!). I loved the fact that the appointment letter had a photo of the building on it, explained who would meet me and even warned me that the lift was noisy! I thought I'd be waiting over a year too, but it was less than 5 months from referral to diagnosis - although that does depend on what part of the country you are in.

Polter, I would have killed for a bath after sitting in the jerky ambulance right after giving birth and then having to walk through the hospital (they did eventually find me a wheelchair) whilst I felt like my insides were falling out. Unfortunately, I just got a quick shower. Luckily, I got a private room for that night and didn't have to stay on the ward, which was infinitely preferable.

And the breastfeeding support worker was there (with DS1 she'd called in sick so there was nobody to help me with BFing) and she had read up a lot about tongue ties in the two years since I'd struggled so much with DS1 due to an undiagnosed tongue tie so she immediately agreed with me that DS2 had one and got me an appointment ASAP to have it snipped at the children's hospital.

A much better experience overall but I'd have still preferred to stay at home the whole time.

StopMe, that sounds brilliant! It's heartening to know it's handled so well in some parts of the country. My GP just looked at me like I had two heads and then phoned me to tell me there were no adult services for ASD assessment after she'd consulted with her colleagues.

When I went to the GP they asked why I was seeking a diagnosis, and I told them that if I did have ASD, I thought it was important for my mental health team to know - I've had extensive involvement with MH services since before I became an adult and ASD can really affect how MH problems present and how best to deal with them. As it turns out, MH services used it to deny me psychotherapy but I think on the whole it has been useful in helping my doctors understand what's going on inside my skull.

BDH, write to your practice manager if you want to pursue it - legally there has to be a pathway for diagnosis for adults in every area (even if you then have to wait over a year or whatever). My GP did initially say that she "didn't see the point of having a label" but asked me to return with something in writing about why I thought a diagnosis would be useful and why I thought I had ASD. I returned with a (condensed as much as I could!) 11-page document and she didn't fight my request at all once I'd given her that.

rat - that's dreadful about denying you psychotherapy. I didn't tell MH services until I met my CBT psychologist and she was lovely and perfectly capable of adapting the therapy to something other than CBT to get around the NT bias that CBT provides, and very keen to learn from my points of view.
I remember having to explain to her why I was so anxious when having to go into a nearby (very small) town, and she was obviously going through her list of normal questions about whether I was scared someone might say something to me or judge me; or if I might have to speak to them and her having a lightbulb moment when I stopped her and said "It's not like that at all. I don't see busy areas as full of people who might talk to me or judge me but the people in those situations are more like pillars that are randomly and unpredictably moving and getting in the way".

The problems for which I was referred to psychotherapy by the CMHT psychologist didn't change, but they insisted on waiting until my ASD assessment report came through before assessing me. Once they got it, they didn't even bother to give me an assessment. In the letter they sent they said that the service they provide isn't usually considered a first-line treatment for a primary diagnosis of ASD and recommend I "engage with what was on offer from the ASD services" which was… er… nothing. I have bipolar disorder as well as ASD, so it's not like it's only ASD going on there, and even if the primary diagnosis is ASD, the problems that I had/have, and for which I was referred, still exist(ed).

When I rang up to query it, the psychiatrist at the specialist psychotherapy department said that for people like me, something more concrete than what they provided was usually better.

I'm sure they would argue that it wasn't discrimination, but oh well.

I found a private therapist who was able to accommodate my ASD. Yours sounds great StopMe :)

I was similar in that my referral process was straightforward (albeit very slow!). I asked my GP, said that it thought having undiagnosed ASD was impacting on my MH and anxiety issues (chronic problem). She referred me - took a while to work out where to refer me - and then I got a questionnaire to complete, including a section on why I wanted the assessment and why I thought it would help. Then I got a phone call offering me an assessment date. Timescale was; August 2014 - referral made, February 2015, questionnaire sent, March 2015 I returned them, December 2015 offered assessment appointment the following week, January 2016 follow up including formal diagnosis.
I'm now having counselling through local NHS services and she's been brilliant at taking the ASD into account with reference to management (asking if certain approaches work for me depending on how I see things and offering paperwork in different colours for my dyslexia).

StopMe, I keep wavering between complaining and trying to get a referral through the NHS and just leaving it until next year when DH and I should be in a slightly better financial position and could afford for me to pay for an assessment through a charity.

DH had taken the boys to the park so I have the house to myself for a while. He really is trying to to support me through this burnout.

*has

Good going Polter! I'm about a third of the way through the first draft of my essay, and am currently plastering sticky notes all over my library books, with things like "birth rates", "drinking", and "child prostitution" written on them.

I've been bookmarking loads of websites that might be useful for my assignment.
So I've sort of been doing something

I believe in you all! You can do it!

And other motivational phrases!

I'm just trying to write a blog post. It's not really on the same scale as the rest of you...

I think you mean gathering and collating useful and relevant material.

It's what you call it that's important

Thanks BDH, and good luck with your blog post :)

Thanks rat I like that description better

BDH thanks for the encouragement.
I've also emailed my tutor just to double check I'm doing the right think on the first bit of my assignment.