Autistic women assemble! #3

[Nepmarthiturn]

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:

1

http://www.mumsnet.com/Talk/_chat/4777843-autistic-women-assemble

#2
http://www.mumsnet.com/Talk/_chat/4865805-autistic-women-assemble-2

@emiliaofnewmoon yes she did. I’m not sure whether she still conducts the assessments. That might have a bearing on your decision.

I found my non-clinical diagnosis from Sarah Hendrickx very helpful. I disagree that it’s just like self-diagnosis. She’s a respected expert in the field of autism and in autism in women.

It's not a diagnosis, SH is not qualified to diagnose. There's no such thing as 'self diagnosis' either because 'we' are not qualified to diagnose ourselves, hence using the term self identification.

From https://axia-asd.co.uk/meet-the-team/

Sarah is autistic. She has provided diagnostic Autism assessments via Skype/Zoom at Axia since 2017, being clinically supervised by Dr. Linda Buchan. She is highly experienced in the assessment of autistic females and those with co-morbid profiles of Autism/ADHD. Sarah has carried out more than 1000 assessments over 13+years – both with Axia, for the MoD and independently.

She is author of the best-selling book: Women and Girls with Autism Spectrum Disorder, which has sold more than 35,000 copies. Sarah has also trained psychiatrists in the diagnosis of female Autism. She has a Postgraduate Certificate in Asperger Syndrome and an MA in Autism.
Sarah has delivered over 1000 Autism training workshops and conference presentations internationally to all types of professionals from educators and care providers to counsellors and lawyers. Many of her presentations can be found on YouTube. The following link is a presentation by Sarah at a National Autistic Society event, speaking about Autism in women and girls:
Sarah has spoken openly about her wide and varied life experiences in her talks as an autism speaker, including 40+ failed jobs, life-long mental health difficulties and numerous disastrous relationships – all of which she shares with humour and brutal honesty. Sarah’s partner, daughter, son, and various other members of her family also have Autism diagnoses.
Sarah has written 5 other books on Autism – employment, sex and relationships, alcoholism, the adult neuro-diversity spectrum. She has been involved in the development of training materials for the Dept of Education funded AET National Autism Training Programme and also spent three years working for the Ministry of Defence supporting autistic employees in science and technology. She was also involved in Scottish Autism’s Right Click Programme for Women and Girls and the National Autistic Society Professional Module for Clinicians diagnosing women and girls. She was Project Leader for ASpire autism mentoring project and has worked in residential care and educational settings.

She looks truly awesome! But it isn't actually a diagnosis is it?!

I'm currently looking at right to choose and wondering if that will be quicker. Otherwise I will save up for a formal diagnosis.

I've done that module for the NAS and it's really good. It would be fab if all clinicians had.

I my mind I'd love to go to lorna wing.

I seem to have accidentally started a bit of a debate, which I didn't mean to. I appreciate everyone's views, and I have to say this has got me thinking (when I hadn't previously) about who is qualified to diagnose autism and/or whose expertise I trust. I didn't realise SH wasn't qualified to diagnose.

What is your understanding of the horse / zebra analogy?

It relates to rare diagnoses. It's nothing to do with Autism.

Do you have EDS or similar?

Thank you, I am already aware of who Sarah Hendrickx is, and despite all of that information, it doesn't change the fact that she is not qualified to clinically diagnose.

If people are happy to pay £750 to have someone's opinion, that's their choice, but it doesn't alter the fact that it's just an opinion. Self ID is free.

The zebra and horse analogy relates to the medical community hearing hoofbeats and assuming it is a horse, rather than a zebra (the horse being the logical and common assumption, rather than the rare diagnosis) If someone is relating this to Autism, then they are jumping on a bandwagon.

And I say this as a a woman diagnosed with Autism by a Psychiatrist.

I'm getting really pissed off with this now.

It's something completely different.

No wonder people think we are all jumping on the 'trendy' bandwagon.

Fucks sake.

The initial page of the website gives clear info about the non-clinical assessment.

Adult Autism Assessments — Hendrickx Associates (asperger-training.com)

Sarah doesn't carry out the 'assessment', her daughter Jess does the 'assessments'. Sarah isn't qualified to give a diagnosis, nor is Jess.

There's a gap in the market for qualified people to carry out assessments and be qualified to give a clinical diagnosis. But IMO, that doesn't mean non-qualified people should be filling that gap.

@RainbowZebraWarrior well done you for your psychiatrist diagnosis. You win the ‘I’m autistic and you’re just a fake’ game.

And thank you also to @Clarice99 for your ‘considered’ opinion, serving I don’t know what purpose.

The £750 I spent was well spent (being mine to choose how to spend it) and have me much needed comfort at the time. You may sneer, but, well, that’s just being nasty.

So, please stop quoting me - I didn’t come on here to argue and for my choices to be questioned and belittled. I have a right to be proud about who I believe I am, and I believe - backed up by professional ‘opinion’ that I am autistic.

My daughters are autistic, my father and uncles are, as are my nephews. All with ‘proper’ diagnoses which may meet your standards?

I’m not going to list to you all of the mental health problems I have struggled with, and detail the trauma of the social isolation, addiction, and emotional regulation problems I have endured.

So much for support and understanding.

I had never heard the analogy before. I obviously misunderstood it. Sorry for any offence.

When I started telling people about my diagnosis, those who had been classroom support assistants and teachers said things like "I already knew you were autistic" because of their professional experience. This didn't make them qualified to give a diagnosis.

When I was on the waiting list, I told people that I was on the waiting list. I didn't say "I am autistic", I said "I think I might be autistic and I'm waiting for assessment". One former teacher said, "I can tell you now that you are autistic" but again, that doesn't constitute a diagnosis that I can use to get reasonable adjustments at work. What that former teacher said encouraged me to start investigating coping strategies whilst I waited because I could apply those pre-diagnosis, so her input was still helpful.

The input of a person experienced in working with autistic people can be useful if you suspect that you may be autistic, even without formal diagnosis.

We don't live in a world with short NHS wait times and people who suspect that they are autistic still have to cope with everyday life. We can ask people to self-describe as "possibly autistic" or even "probably autistic" whilst still acknowledging that they have support needs.

I'm wondering about reasonable adjustments and access to work.

My current role when I had an occ heath assessment (for other considtions) I said I wasn't sure how to answer the ND box and she completely filled it out "as if" I was autistic based I my experience.

But going for a new role I'm not sure I'm comfortable saying I am until diagnosed.

Is access to work available without diagnosis then? (quite relevant asapplying for jobs and mentoring would help!)

Can I change the subject? I'm really struggling at the moment. I have too many difficult life things going on and am mostly in a state of constant overwhelm. Yesterday my car battery was unexpectedly flat. I was already tearful about something else when I discovered it and that sent me over the edge. Today, my nervous system has still not recovered. I've woken up this morning on edge feeling really rubbish.

The RAC man is coming back in about an hour to fit a new battery. I'm meant to be WFH today but because I got so overwhelmed yesterday, I have a huge backlog of tasks to do before I go away at the end of this week.

Not sure what I'm asking for. Sympathy maybe. I wonder if I'm in a sub meltdown state as I just cannot switch off? Anyone relate?

I waited 3 years for my assessment 5 years ago. Dd12 has been waiting 2 years. It's so exhausting.

@IdisagreeMrHochhauser sympathy from me anyway.
When I get like that I try to find a thing to do that is diverting but easy (usually a jigsaw, shelving books or sorting my fabric stash) to keep my brain and hands busy and break the anxiety spiral.
No idea if that will work for you, or if any of your work tasks fit that bill, but if you have something like that it's worth a try.
If you can do one thing, then have a small reward, it is at least progress even if it isn't everything. Don't look at the whole pile of tasks at once, it's too much. Just take a manageable piece and work with that.

@IdisagreeMrHochhauser yes I certainly do relate. I find everyday life too overwhelming, even more so with peri. It isn't work, it's caring/parenting responsibilities and feeling like I "have to" see people on a regular basis to maintain relationships (but it's exhausting).
It does sound like you are going through a lot, and need time to recharge. It's very hard to actually properly rest though when stuff builds up when you aren't constantly doing it though isn't it?

@IdisagreeMrHochhauser i totally relate too. If you’re anything like me, it’s the RAC man coming and the battery not being fixed that’s pushing you over the edge. I bet you’ll feel a lot better once that’s fixed? Sorry if I am wrong about that but that’s what I’m like.

So can you focus / distract with the tasks that are simplest / you enjoy the most until the car is sorted?

sympathy from me though…that brain overload and constant thinking is exhausting

I'm dealing with unexplained health issues that are leaving me feeling constant fatigue. I've started steroids but they haven't made the noticeable impact the doctor suggested they would.

I've also been trying to get pregnant and failed so am in grief. Also likely to be in perimenopause now.

I was in a relationship but that ended and he's cut me off completely to deal with his own serious family issues so I've lost my main support.

Then work fell to pieces and I went off on long term stress leave due to being bullied by a manager. I'm back now but my current role is temporary and there is a lot of uncertainty which I'm not coping well with.

Some days I literally can only just about face the day. Yesterday was one of those days before I knew about the car.

I was meant to be delivering election leaflets. Really didn't want to do it due to anxiety. Got in the car and it was totally dead.

They rang me last night asking me to deliver more this week. I cried on the call because I'm going away on Wednesday evening and I have a million things to do before the pet sitter can safely get in to feed the animals. I said no and they kept trying to persuade me to say yes.

I feel overwhelmed because I am overwhelmed. I'm not convinced I need a new battery so I'm not happy about paying for it but breaking down again would be a pain so I'm grudgingly getting it done.

Sometimes it really is the little things that tip us over the edge! I'm still recovering from last week. Luckily though, I'm on leave this week and am going to visit my younger kids for a few days which will chill me out enormously.

Break all your tasks down into little chunks. Deal with some of the easiest bits first to give you some sense of achievement. I find this helps to clear my head of clutter.

One little coping mechanism I have - when I'm WFH, I have a small set of dumbbells in my office. As soon as I feel the anxiety rising, I take a beta blocker then do a few arm exercises. It reduces my cortisol levels and has the added bonus of getting shot of my bingo wings. 😉

Oh, and just to add, you don't need an official diagnosis for access to work, you just have to have support needs where reasonable adjustments will help.

It’s my birthday today! Treated myself to a McDonald’s Mighty McMuffin (sausage, egg, bacon), a hash brown and hot chocolate. Not very healthy but it’s my birthday so…
Planning on going to a nice Italian place for dinner later. Pasta has been my favourite food since forever! There was one point in my childhood where it was all I ever wanted for dinner. My palate is bigger now but pasta is still #1.

Bye bye @Shufflingby

Happy birthday 🥳 @toffee1000 have a lovely day 😊