Autistic Women Assemble! #2

[Nepmarthiturn]

Helloooo lovely people, a new thread for a us to continue to chat and connect with other autistic women (small talk and word mincing not required). 😊

As before, anybody newly stumbling upon this is very welcome to join us (even if still awaiting diagnosis). But we'd be grateful if others could leave us alone please, like the NT man we encountered in thread #1. 🤣

Another "lovely" thread. 😒

To block my autistic classmate on Instagram and ignore her http://www.mumsnet.com/Talk/amiibeingunreasonable/4934405-to-block-my-autistic-classmate-on-instagram-and-ignore-her

By the wording of that post, I knew it was probably the same person as the last one. Same sort of emotive language 'blocking' and 'blowing up' Sure enough, now deleted as a PBP.

I must be having a relatively good week this week as I'm not engaging with the trolls and it's not winding me up. I just think they are pathetic and sad.

I'm off into the city today. A rare jaunt with DD. Will wear my ear defenders on the metro and hope it's not too crowded (shouldn't be) I never went into the city for about 4 or 5 years until recently. Trying to go every couple of months or so as I'm worried my DDs world is very small and insular. I guess it's about trade off, as in, it's worth it because although it can make us anxious, we do feel good about ourselves I'm a positive way. Like we've achieved something. We will go to Forbidden planet for her, Lakeland for me then grab a McDonalds (hoping for a new squishmallow toy) and come home.

Hey, guess what!

DS has just been offered a council flat in our village! I am so excited - so is DH.

And of course DS himself is ecstatic. The council where he lives (in England) haven't even acknowledged his application to them, so Scotland has done much better.

Yaaaay - only 13 days since he applied.

It's such a relief, a load off my mind, and his of course.

A good kick in the teeth for his horrible father.

DS got an email telling him he had three days in which to view the flat, so as this is Friday, he started to panic that I wouldn't be able to get it done by Monday.

I had the same thought - but when I phoned them (I am his appointee to look at the flat) they said the weekend didn't count and they would phone me on Monday to arrange a viewing.

DS and I agreed that they should make it clear (for the autistically-minded) that as long as you get in contact, they don't actually count three days from when they send the email.

Tuh! Our minds raced to the same conclusion immediately. Don't say three days if you mean MORE than three days.

Or maybe clarify that it’s three working days, which would normally be Monday - Friday and not the weekend. Or just specify an actual date.

@RainbowZebraWarrior I hope you had a nice day out. It is worth making the effort sometimes even if you dread the prospect beforehand!

@TheShellBeach that is fantastic news! What a relief for you all. Amazing, I thought Council properties were like hen's teeth! He must be over the moon, to have that security and to be moving so close to you.

@Nepmarthiturn we live in a remote Scottish village where there isn't much employment.
People are not falling over themselves to live here as a rule lol.

It sounds blissfully peaceful!

@Nepmarthiturn I'm shattered, but it was worth it thank you for asking. Got my free Lakeland oven gloves and a few ideas for DDs Birthday and Christmas. There are so many Geeky shops now it was lovely to see her face light up going in and having a browse. I'll be having a couple of days rest after it all though.

Hope everyone else is doing OK and enjoying their Friday evening. I was looking forward to the John Lewis Christmas ad being aired tonight, but I fear I may have made that up!

@TheShellBeach great news about the flat for DS. Everything crossed that it's suitable for him.

@lookingforMolly I'm so sorry to hear about your mum.

It's a personal decision but almost all of the autistic women I know were diagnosed as adults because there was such ignorance about how autism manifests in women and girls when we were young. I know some women who have realised they are likely autistic but haven't felt it necessary to pursue diagnosis, and are happy just reading around the subject for greater self-understanding. I don't know any autistic women who have been diagnosed and regret pursuing diagnosis. Most people seem to describe a sense of relief, once the shock wears off. It's also worth bearing in mind that a diagnosis report does not just say "you are autistic", it contains detailed objective analysis of your particular autistic traits and profile which can offer a lot of insight into your own needs, challenges and strengths and therefore also help to make changes to life to make it more manageable and happier to suit you personally, because individual autistic profiles vary a lot.

I hope you find a way forward that feels right for you. Don't be embarrassed at all to raise it: it's nothing to be ashamed of. And it's also sadly still incredibly common for autistic women to be misdiagnosed with all kinds of other mental health conditions prior to realising what is really going on and finally getting an autism diagnosis.

It sounds as though you're having a really tough time @lookingforMolly

Feel free to vent stuff here whenever you want to. There are a good bunch of people here.

Thanks @Nepmarthiturn

@lookingforMolly I was misdiagnosed with various personality disorders (wrongly) before getting my autism diagnosis.
This included EUPD.

Even psychiatrists get their diagnoses wrong quite often, especially with women.

I struggled hard with life.
It was a great relief to get the right diagnosis and then to make sense of my whole life.

We're a very supportive group on this thread. I think you'll fit in here.

Hi everyone, first time posting here.

Just looking for some advice. I'm in NI so realise it will be different from England.

My health and social care trust offers zero support for autistic people over 30, even newly diagnosed. It is also a five year waiting list for an assessment, so I decided to go private.

I'm 34 and really struggling. I haven't been able to work in well over a year, in the support group for ESA. I rarely leave the house and don't have any hobbies etc. If I lived 10 minutes down the road I could attend group autism support services, have an individual support officer come to my home and provide individual support and the assessment wait would have been approx. 18 months.

I was wondering who I could write to to highlight the postcode lottery in services. Is it just my MP? His constituency barely overlaps with the health trust I'm in. My MLAs (same constituency) Is there someone in the health trust I can email?

Hi@Chickensaredinosaurs welcome to the thread.

I don't know how things work in NI but I'd be inclined to email the whole lot of them.

@Chickensaredinosaurs (LOVE your username btw!) it is appalling how little support it available. I did not realise it varied so much by area.

There is a health and social care committee for Parliament (consisting of cross party MPs). It might be worth trying to raise this with them?

committees.parliament.uk/committee/81/health-and-social-care-committee/

Sadly consideration of autistic people's needs doesn't seem to occur anywhere in public services.

I believe there will also be a commissioner for your health trust, who determines how to spend their budget, what services will be provided. So you could write to them highlighting the lack of provision in your area and the discrepancy with the neighbouring trust and ask for the evidence that they used to make this decision not to provide the services that autistic people need. You could use a Freedom of Information request to try to get a copy of data they have (or most likely haven't bothered to) collect on this when allocating their budget, if they refuse to provide the evidence to you.

And then ask them how they are complying with their responsibilities under the Autism Act 2009 (which requires them to provide diagnosis and services for autistic adults) and the Equality Act 2010 (which requires all public bodies to make services accessible for people with disabilities). In my experience, the obligations of public bodies under both Acts are ignored.

Thanks @Nepmarthiturn and @TheShellBeach, good advice. With the assembly not sitting here it makes it even harder to get anything done

Yes, that is awful. Failing the people so badly, to leave nobody representing them, effectively. 😔

I am so angry about how autistic people are treated by society and the law ignored, but like many others I just don't have the energy to take on any more battles. Daily life is hard enough. And I suppose that's how they get away with it: vulnerable people already struggling have no capacity to enforce their rights therefore the law is effectively unenforceable.

Well done for having the will and energy to want to fight.

It may be worth also contacting the National Autistic Society to see if they can offer any support with either your personal situation or any kind of campaigns they are doing which link up with what you want to do.

Hey everyone, I’m in my mid 40s and have recently been diagnosed with ASD, I also have a son who has ASD (that’s what made me go and get assessed). Happy to chat to people 😊

Hello @IHateTuesday

Welcome! 😊 Glad you joined us. Lots of us with autistic kids, too, and all that brings, both wonderful and terrifying!

Thank you, that’s very kind, he’s sweet as anything really, just anxious

I always thought I had something because people said I could be too up front or open about things without thinking

I always thought I had something because people said I could be too up front or open about things without thinking

Same here. Forever being told I'd said something inappropriate.