Autistic women assemble! #4

[RainbowZebraWarrior]

This is a thread for autistic women to connect, chat, vent, laugh, share and seek advice and solidarity (small talk and word mincing not required). 😊

Any autistic women newly finding the thread are very welcome to join us (even if awaiting diagnosis) but we'd be grateful if others could leave us alone please…

Previous threads:

Thread 3:

https://www.mumsnet.com/talk/_chat/4979068-autistic-women-assemble-3?reply=136877684

Thread 2:

www.mumsnet.com/talk/_chat/4865805-autistic-women-assemble-2

Thread 1:

https://www.mumsnet.com/talk/_chat/4777843-autistic-women-assemble

I agree with this but I also understand your point @Clarice99 I think this is one of those things similar to whether it's 'autistic person' or 'person with autism' etc there are opinions for and against everything and I don't feel either side is right or wrong.

I’m formally diagnosed but before that I was self-diagnosed. For me, a diagnosis was important because I wanted to know 100% either way (I’m currently considering pursuing an ADHD assessment) and I was sure if I was so was DD and I knew it would probably help with her assessment due to the genetic link.

I have absolutely no problem with people being self-diagnosed as it’s not always possible (or in many cases wanted) to go down the formal diagnosis route. If someone can recognize autistic traits in themselves and it helps them understand themselves better and find a community that will also be supportive and understanding then I think that’s a good thing.

Friends? What are they? No seriously, if I had friends and they invited me out it would have to be somewhere familiar or I don’t know if I would go. My preference would be only people I know at a place I'm very familiar with. I could possibly cope with a familiar place and mostly people I know. Unfamiliar place coupled with only knowing maybe 1 or 2 in a group, nope I would make excuses and not go.

My sensory issues increase when I’m stressed, nervous, tired, ill etc. I get overwhelmed very quickly and I’m more likely to have a meltdown.

I didn't say that people weren't welcome, diagnosed or self identifying, nor did I minimise struggles.

Perhaps you could read my post again.

I agree with Clarice and it's been said before. There is nothing wrong with thinking you're Autistic, and joining this thread. That's why it says that undiagnosed people are welcome.

There is a problem with self diagnosing, though. As there would be for any medical condition. It's on all of the Autism threads that we battle on here. It feeds into the narrative that we are making it up / just quirky etc.

Not being sure if you're Autistic or not, sucks. I called it 'Schrodingers Autistic' and I've spoken about that many times. Knowing you probably are is also difficult and that's one of the reasons this thread exists. When I was awaiting diagnosis, however, I did not call myself Autistic as I felt that wouldn't be right.

I do feel strongly about this, in exactly the same way as I would if there were someone on my EDS support thread who self diagnosed EDS. You either have it, or suspect your have it, but actually self diagnosing complex medical issues yourself isn't really a good idea for many reasons.

Feeling a bit disappointed with how my phone call with the mental health person went today.

I had to book this telephone appointment about a month ago. I told her I was looking to be referred for am assessment for Autism and ADHD she just said "I'll send you some forms to fill out and bring in to the surgery. They are quite long so maybe have someone help you with them or do them in sections. No rush"

OK, I was not so thrilled with that as I don't have a printer or computer so have to go to the library which is a pain. Also she only sent me ADHD forms so I had to call back and ask for the autism ones. Also, the 4 forms aren't long at all. Barely a page each, two I just have to sign so I'm concerned I've not got the right forms.

Last time I spoke to a doctor I got a proper appointment where she talked to me for about 15 mins about my concerns, family history etc and then nothing came of it (this was a year ago) now a friend suggested "Right to choose" so I'm hoping to be referred to them. I think I was just hoping to feel a bit more heard or like something would actually happen.

It's really difficult and I think lots of us have had 'false starts' and misunderstandings. I know I did. I don't think that many healthcare professionals actually understand the process.

It's exhausting and soul destroying, but youve started the process (again) so please don't give up. Forms are used as a pre assessment check to see if you actually meet the threshold for assessment (I hope you understand what I mean, I am absolutely on my arse with a chest infection atm. I've been through the referral assessment procedure many times for myself and DD, so I get it, though)

Regarding Right to Choose, you have to do the donkey work yourself. The system exists (in England) but you have to find out what providers are currently on board. There is no Right to Choose team of people, its just a process whereby you can choose a provider yourself.

You need to Google Right to Choose NHS Autism / ADHD and providers who are on board will come up.

So you need to fill in the forms and your AQ50 (of they have asked you too) and take them back to the surgery, but you would have to provide details of a provider you'd like to be referred to under the Riggt to Choose scheme as well, otherwise you'll just be placed on the NHS waiting list.

I'm sorry. It's exhausting. I know.

Thanks @RainbowZebraWarrior they sent me the AQ10 to do (again, as I did it over the phone last year, I've also already done AQ50 and RAADs) I think false starts is a good description. I just feel like I want some certainty, from researching about autism so much I definitely feel in myself that I am but obviously I'm not the professional.

Thanks for telling me about Right To Choose, my friend had told me I should do it as I'd probably be seen quicker and she made it sound really good but did not explain to me that I'd need to find providers myself. I will get googling now!

I hope you feel better soon!

Problem shared currently look like a good option for dual diagnosis. Approx wait times 12 to 24 weeks.

https://www.problemshared.net/right-to-choose

Thank you @RainbowZebraWarrior

This bit of your post really jumped out at me:

When I was awaiting diagnosis, however, I did not call myself Autistic as I felt that wouldn't be right.

I didn't either. I didn't share my thoughts with anyone other than DH. I knew, but up until my assessment/diagnosis, it was quite simply just a thought, a belief. I wasn't qualified to diagnose myself, nor was/is my DH.

Post diagnosis, I've had to provide evidence of my diagnosis to my employer's Occupational Health doctor so that reasonable adjustments could be put in place, and Access to Work/DWP also asked for evidence, so it makes me wonder how all of the people who 'self identify' get accommodations.

I'm assuming people who self diagnosed/identify as autistic or any Neurodiversity just don't get any accommodations made?

I am very lucky that the way I work currently I don't need any accommodations, my boss is really flexible and I very much do whatever I want (within reason of course) however if I am aware that if I did change jobs without a diagnosis and the paperwork that would go with it I would massively struggle and possibly not hold down a different job.

I think it can vary. Certainly with schoolkids it goes (or should go) on need. So if you have extreme anxiety in social situations, or sensory issues with noise at school or work that have driven you to meltdowns, burnout, etc then it should be addressed and reasonable adjustments made.

Like kids, with adults it's often how the exploration to assessment starts. (Linking the anxiety to specific issues, Sensory overload starting to interfere with school or work life etc) but accommodations should absolutely be addressed when anyone is struggling. (Often alongside a person investigating any appropriate assessments / diagnoses, support, therapy, treatment)

Regarding adjustments, I think that’s the point with the majority of self-diagnosed people who don’t go on to seek a formal diagnosis, they are not looking for external understanding/adjustments just a way to understand and make adjustments for themselves.

I also don’t think there are people going about calling themselves autistic when not formally diagnosed. Again the self-diagnosed people I’ve come across don’t tend to tell anyone else except maybe a partner (and on threads such as this).

I’m not sure if I fully understand the issue now, is it to do with people self-diagnosing at all or is it the language used (self-identify vs self-diagnosis).

@TheNameIsDickDarlington
I had a false start as well with my diagnosis. Went to the GP with all of my ‘evidence’ (test scores, list of traits etc) and he booked me in with a mental health nurse to hopefully get me started (he had no idea how to go about it). The mental health nurse told me I couldn’t possibly have autism because only children have autism. I actually laughed at her and asked if she was serious (she was), so I left.

Went back to my GP who was so apologetic and told me to leave it with him and he’d find out how to get an assessment. He referred me to a specialist autism assessment clinic and I was seen about 4 months later. So please keep going, I know it's long-winded and you may hit some roadblocks on the way but it will be worth it to finally get an assessment.

However, just to add something to my previous post; I was absolutely laughed out of a PIP tribunal when trying to describe how my Autistic traits genuinely affected my life. This was while I was awaiting assessment. This was because - and I quote - "but you've not actually been officially diagnosed with anything"

Once I was diagnosed, I reapplied and absolutely no questions were asked. (All I did was highlight my Autism diagnosis on my medical record. I did not send my 22 page assessment)

All of those same issues applied, but I guess an official diagnosis is just that. It is confirmation that a person is genuinely struggling.

It's worth noting that the DSM5 requires there to be 'persistent deficits' across a number of criteria for an Autism diagnosis. We've discussed this here before. That's not to gatekeep Autism, but rather to explain the level required for diagnosis, and how most of us who have been diagnosed were simply getting to the point of not being able to function.

Text here:

Autism spectrum disorder DSM-5 diagnostic criteria: Full text

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity: Severity is based on social communication impairments and restricted repetitive patterns of behavior. B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior. C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life). D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

I also don’t think there are people going about calling themselves autistic when not formally diagnosed.

That's not my experience. At least a fifth of my team at work 'self identify' as neurodivergent. I'm not entirely sure of their motives because without a diagnosis, accommodations/reasonable adjustments cannot be made.

I’m not sure if I fully understand the issue now, is it to do with people self-diagnosing at all or is it the language used (self-identify vs self-diagnosis).

As raised in my earlier post, it's about language. Self diagnosis is impossible. Self identification is not.

I'm sorry everyone, I didn't realise it was wrong to self-diagnose or to say I'm autistic when I'm not diagnosed. Thank you for the heads up.

Don't worry. You were actually the second person to mention self diagnosis on this new thread. I think it's just good to be mindful about how it may come across. I totally get it when you feel so sure you fit the brief, but at the same time, if we opened the thread with "all those who are self diagnosed are welcome" it could and would turn into a bit of a minefield.

Please feel free to ask questions and interact. As I've already said, I am not a gatekeeper of Autism, and I totally get that exploratory phase of life.

I would add to this that a psychiatrist said I had a personality disorder when aged 17

Finally diagnosed with autism in my 50s

So the professionals don't always get it right😁

Yes, I understand. I'll come back to the thread if I ever get a diagnosis.

Sorry, removed the word 'official' from diagnosis.

A paediatric psychiatrist looked me in the eye and told me that my son didn’t have a trace of autism and that he simply had a “difficult personality”. A rather damning diagnosis for a 9 year old.

A year later a group of professionals (a consultant paediatric psychiatrist amongst them) scratched their heads and couldn’t understand how autism had been missed!

Yes, many women get initially wrongly diagnosed with BPD / EUPD or Psychosis, Schizophrenia and many other conditions. There are many sad and traumatic accounts across all four of our threads from regular members. This is likely why we are seeing a rise in (finally correct) Autism diagnoses among older women these days.

That said, it also goes the other way, which is why childhood trauma and many other conditions must be ruled out via a thorough and professional assessment.

Thank you for coming back and for posting @SuziLikeSuziQ

As @RainbowZebraWarrior said, we're not gatekeeping autism. But for me (and others), the distinction of a diagnosis and self identification is important.

@ZiggyZowie your misdiagnosis of a personality disorder appears to be quite common. Loads of women are misdiagnosed with mental illness when they're autistic.

As an aside, one of my team 'self identified' as having BPD. I couldn't get my head around that at all.

Had a similar situation when DD was first assessed. Long story short a cardiologist who had ‘an interest in autism’ did a botched ADOS assessment on DD. For example, she asked DD to make up a story using some inanimate objects (pencil, paperclip stuff like that) DD did as she asked and the assessor would not listen when I said she was acting out a scene from an episode of her favourite show so wasn’t making a story up, she was re-playing something she’d watched 1000 times. She also didn’t want to listen about any of DD’s repetitive behaviours, social issues etc, she didn’t care.

Right towards the end DD decided to grab a chair and go write on a whiteboard that was in the room. This woman told her to get down and she ignored her. I said her name, waited until I knew I had her attention and then asked her to stop and get down and she did so immediately.

This woman’s conclusion after seeing her for 1 hr (no prior appointment)was that DD was not autistic but probably had PDA based on the situation with the whiteboard. That’s what cemented my conclusion that this woman was an idiot as PDA is considered part of the spectrum. She also didn’t take into account the SALT report that specifically said her language profile was consistent with a child who was likely autistic, the OT report that noted all the sensory issues etc.

I complained and in the meantime, DD was diagnosed via an autism charity who did a pre-screen, ADI-R, ADOS and also looked at reports from SALT, OT, school etc. My complaint resulted in a half-arsed apology, completely ignoring that they hadn’t followed the NICE guidelines, everything for DD has been a battle with incompetent people ever since.

Happy August 🙂 how’s everyone coping with the heat? I wish it was cooler

@JewelleryCat I don't do well in the heat, I have sensory issues with clothes, especially bras, at the best of times. I have to wear one, I am a G cup, so lovely light bralettes do not really do much good. And I cannot leave these puppies to roam free.

Other than that, I am glad I don't have to work in hot office where you cannot open the windows and the air con doesn't work.

Loving the easy summer dinners though, everyone is quite happy with a ploughmans or a ham salad.