Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #19

[Galvantula]

Hope it's ok to start one without Polter

Previous thread: www.mumsnet.com/Talk/mumsnetters_with_sn/2954319-Neurodiversity-support-thread-for-women-with-suspected-diagnosed-or-self-diagnosed-autism-ADHD-and-other-NDs-18

The last one filled up a little while ago, hope everyone is doing ok.

Mind if I join you all please?

I was diagnosed autistic a few years ago having known for a few years.

About 18 months ago it finally clicked that I had ADHD too. Diagnosed in November and started methylphenidate - it’s changing my life for sure.

Hello, I would like to join in as well, if it's alright.

I was formally diagnosed last year when I was 35, although I had suspected for a number of years that I might be autistic and have been aware from an early age that I wasn't like the other children. I felt I was some sort of 'freak' or 'weirdo' and would try hard not to be, but just ended up with poor mental health for most of my teens and twenties. Now I understand myself better and that it's ok to be different.

Hi, good to see another thread started. I wish it was more active.
Can I ask if anyone else with ASD has trouble finding comfortable clothes and what they do about going to work and wearing the right thing?
Also, @LaneBoy how did you know you had ADHD as well as add? I ask because I have terrible trouble concentrating but probably not many other symptoms. ☺️

Hi :)

For me it was the feeling that I was still “wrong” compared to others I knew with an Aspergers type profile (I was diagnosed after the criteria changed but the specialist said I could use the name if I wanted - now I just say I’m autistic). Others seemed to have better focus and had degrees and stuff, I know that’s a big generalisation obviously but I just felt like compared to those I knew, I hadn’t made anything of my intelligence and my brain was all over the place.

I’ve known about inattentive type ADHD for years as a friend’s son has that dx. And yet I just didn’t click. I’m not really sure how I did in the end. Maybe I started reading more about executive function and hyperfocus etc.

Also I was getting more and more frustrated with the fact antidepressants have never worked. So once I realised I got pretty fixated on the idea of trying the ADHD meds as it felt like it was my one chance of getting help.

Oh my gosh you are talking about me! Can I ask what your life is like now? Do you work etc?
I'm thinking about how to go about getting the dx now but I might (post lockdown) go back to the psychologist who diagnosed ASD for me x

I tend to cut off all the labels on clothes, but sometimes that can leave an even more itchy stub. I need to learn how to undo the stitching so the labels can come away more neatly.

I prefer loose, softer clothing. I'm lucky that I work in a techie industry, so we are allowed to wear casual clothing. There's no uniform or business attire required, so I am always in jeans and t-shirts / fleeces.
I would really struggle to work somewhere that enforced formal or tight clothing.

My life is still very very basic TBH. I worked for a while until my health got too bad - I got ME/fibromyalgia in 2012 and I think it was autistic/ADHD burnout that triggered it as it happened within a month of going from part to full time. I kept going on reduced hours and lots of absence until it was unsustainable, now I’m home with the DCs, my 10yo (also autistic and ADHD combined type) is home educated. DH became unwell again last year and is now unlikely to be able to return to work outside the home ever.

I’ve had mental health issues worsening for the last year (not new - I was in a psych ward at 15) but I’m wanting to think about work again in future. No idea what I could do though really. I am desperate for SOMETHING but I have to be careful due to physical health apart from anything else. Qualified for nothing and stuff like retail would cause relapse. But the first priority is to get myself more mentally well and the meds are definitely helping with that, I’m starting to feel a bit more like I can cope with daily life if that makes sense? Just housework and life admin etc. I am far far from sorted, I still procrastinate especially over bigger things and stuff that causes anxiety like filling in forms. Long way to go.

Sorry that’s probably more detail than you needed 😂

I felt a bit awkward today. Went to the shops for the first time in a month (DH has been doing it all) and I just couldn’t understand what the pharmacist was saying. It was embarrassing that I had to keep asking her to repeat herself. Nobody else in the queue had to! Then I realised - it’s not because of the mask muffling her voice, it’s because I rely so heavily on lip reading. My hearing is physically fine but I have auditory processing issues, anyone else? It has improved slightly on meds I guess because I can focus more but today was hard!

Thank you @LaneBoy for that honest reply. That was a good amount of detail! It helps to know how others are managing (or not managing on the bad days!).

I also have some sort of auditory issues, I have to use subtitles etc. I'm not good on phones but can manage face to face usually. I'm sorry to hear about your DH's health. Does he work from home or not work? Is there something that you could do together?

Me! I'm 50 and will be looking for an assessment when lockdown is over. I manage day to day life okay. It's been social situations that I've struggled with, particularly when I was younger as I just didn't get "the rules". Clothes and shoes have to be comfortable and I get anxious around foods that are unfamiliar or the wrong texture.

I forgot to put my actual update!

After the GP referral I have been told I will get a psychiatrist appointment, when things are a bit more normal I guess.

After that letter I received the ADHD screening questionnaires for myself, partner and parent. I've sent them all back to him, so just waiting to see what I hear back next.

That's really helpful to hear.
Has anyone got any good book/website recommendations?

Thanks for the New thread.

Waiting for diagnosis. Now the wait is longer.

@BlackeyedSusan - yeah feels like it could be a long time! :(

Hope it’s ok to join the thread. I’m in my 50s and hoping to get a diagnosis at some point.

Re clothes labels, I’m only just realising this is an autistic thing, but I’ve always removed labels. You can get a little sewing gadget called a stitch breaker that pokes under tight stitches and cuts through the thread, so you can remove the whole label without leaving a stub.

Does anyone have suggestions for books about experience of autism, especially by women? I just read Odd Girl Out by Laura James, which was helpful, & I wondered if there are others in a similar vein?

Hi, of course you're welcome to join. Hello! Have you started the process of getting a diagnosis?
I liked 'the electricity of every living thing' as a good read about one woman's autism.

Hi there! I was diagnosed six months ago and am still trying to come to terms with the fact I’m not just lazy, anxious and depressed. Autism explains everything really but it’s hard getting out of the mindset and what you’ve been told for 40 odd years.
I highly recommend YouTube videos by Sarah Hendrickx on autistic women, she is so knowledgeable and when watching them I had multiple a-ha moments!

Thanks Oddgirlout and Battenberg - I will look at those book and video recommendations. I just got Neurotribes on kindle this morning and have been reading that all morning while supervising online school work.

I haven't yet started the process of getting diagnosed. It was a huge step for me talking to anyone at all about autism, it's been something in the back of my mind for maybe 4 or 5 years, then I started to find out more, now I've mentioned it to dh, who didn't dismiss it but he doesn't see it as a life changing thing, just a label for my weirdness. I've been looking for the perfect article to show him why I think I'm autistic, but nothing is quite right, so I'm trying to write something for him, summarising what I've read and how it relates to me.

I've been trying to get the courage to go to my GP for ages. Even the thought of ringing the receptionist makes me anxious, but I will make an appointment when lockdown stops, maybe I'll ask dh to come with me. Meanwhile I'm doing stuff like printing out the NICE guidelines, AQ test results, and making notes on why I think I'm autistic, so I've got info to take with me to explain why I want an assessment - does that all sound like the right thing to do?

That's interesting Battenberg about the mindset. I'm a big underachiever - loads of failures in jobs, education, etc - things that everyone thought I should have been able to do easily. I've always blamed my laziness, lack of organisation, etc. I really want an official diagnosis because I feel like people will think I'm just making excuses if I don't have something official. I hadn't really thought that I might still fall back on blaming myself. I think I need to be more realistic about this being a big thing for me and everyone else who knows me isn't going to suddenly be saying "of course! It all makes sense now!"

Larklight I relate to what you are saying. I found the Sarah Hendrickx videos on YouTube brilliant actually. I sent one to my partner who immediately said “that’s you!” Then we watched more and it became more and more obvious. I had up until then though I may be autistic but dismissed it and instead blamed my laziness. Now I realise it’s my impaired executive function that’s to blame!

Hello all. I'm new to the thread and to the SEN board. Over the last few days, I decided to pursue getting a diagnosis for my 13 yr old DD, who has been struggling for a while. I have a phone consultation with the Lorna Wing centre booked for the 12th May. I've been doing a LOT of reading over the last few days and have had a huge epiphany about my own life, to the extent that I am finding it all quite hard to process. I'm feeling a bit overwhelmed and pretty tearful, actually!

Seems there are a lot of us about with similar experiences. Lazy: yep, but I am also hypermobile, diagnosed in my forties. The fatigue with that is a killer.

Can't get anywhere on time without considerable effort. Can do school but it is really hard work.

SignOnTheWindow I think there are loads of things that are very difficult about realising you're autistic late in life. For me it's coming to terms with all the missed chances to be myself, the huge waste of time and energy trying to fit in, the things I might have done with my life if I'd known myself better.

I also have a child who I think is probably autistic, but it happened the opposite way round to you - it was realising I was autistic that made me wonder about my dc who is very similar to me.

I'm probably the wrong person to reply as I am so early on in all of this myself & haven't even seen my GP. On the one hand I'm finding it all very difficult to come to terms with, but I'm also hoping this is the start of being able to draw a line under much of the awful stuff and work out how to get on with the rest of my life with the info I need to understand myself properly.

Hello I was adult diagnosed ASD But have other disabilities. (I know disability is a difficult term re ASD. I regard my own ASD as a disability but absolutely accept that many others don’t see theirs in that way.)
I feel disappointed that it wasn’t earlier so I got help with basic socialising and asking for help. My ASD needs are quite significant but there isn’t support now.

Hw are you dealing lockdown? I’m working from home. I find it even harder on the phone than face to face and I worry I’m interrupting people or getting things wrong.

I have been virtually absent from MN recently. I’m avoiding the main bits because there will just be endless bloody coronavirus threads. Also nothing has been happening (in my life anyway).

I guess I’m relatively lucky in that I got a diagnosis somewhat earlier than many here (22, and I’ll be 25 in a couple of months, I’ll have been diagnosed officially for 3 years come November). In some ways it would have been easier to get a diagnosis earlier. When I started secondary school at 11 I was incredibly shy, but didmt think it could be linked to something else. ASD was first mentioned when I was 16 (that I remember, at least) and obviously I did lots of research and it did fit in many ways. During the diagnosis session at the Lorna Wing Centre it came up that ASD had actually been mentioned first when I was six (well, Aspergers as it was then), but it wasn’t felt to be a problem. I honestly have no idea what made my year 2 teacher mention it, she must’ve had experience of girls having ASD.
Thing is, I was doing A Levels when I was first aware of ASD as a thing, and then after that I went to university so I was concentrating on my academic work more than anything. Again I have no idea exactly what prompted the possibility of ASD to come up when I was 16. I know it was recommended by school that I see a psychologist but I don’t know why. I mainly remember talking about my shyness/anxiety. The psych said that I had many ASD traits but not enough for a full dx, but he wasn’t an ASD specialist and I don’t remember doing a proper assessment or anything.

I also now have diagnoses of inattentive ADHD and social anxiety disorder. I’m fairly sure that the social anxiety disorder is, in large part, caused by the fact that my ASD and ADHD weren’t diagnosed for ages, but that’s not anybody’s fault. I guess I just became more and more aware of how “different” I was to other teen girls as I grew older, but didn’t really think about why. I did pretty well at school, despite my organisation being awful and not being very hardworking.

@toffee1000 it's really good to see you on here again. How are you more generally? What are you up to now?