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

That's really helpful, thanks both.

I am going to write a list to take with me but will also do the AQ50 so thanks for that!

Psychiatry UK is who I've decided to go through. No idea what their waiting list is like at the minute, but as you say it's much shorter than NHS. We're trying to save for dd to be seen privately because it will be a 3+ year wait for her to be seen via CAMHS.

DD had a meltdown last night which resulted in her trashing the television. There was no realisation that things had gone way too far, just a continuation of the rage.
I had the kids on my own all weekend as DH was on call (doctor) and I dreaded having to get up every morning.
I'm mentally exhausted and I don't feel like I have anything left in me to keep trying to be a good parent.

Any other autistic women find they enjoy delegating tasks even though they appear bossy ?
husband doesn’t do anything without being reminded such as chores
im exhausted micro managing tasks any tips how to stop this

I get angry if I ask him to do something and he doesn’t right away or delays it

I also have a strong sense of JUSTICE

if he sleeps 7-8h a night I wake him up to help me with the baby to try and feel a sense of justice

@Zok seriously. You need to contact Women's Aid and split up with your husband.

The marriage is damaging to both you and your children.

Every thread you've written demonstrates how abusive he is.

Well, mes amies, I've completed DS's application for a re-determination of his ADP.

I've discovered that only 23% of such applications succeed, so we may be heading for a tribunal.

@RaspberryHouseBlues hope you’re doing better today. Meltdowns are so hard for everyone. Ours have reduced in the last 6 months since DD has been on a reduced timetable and is more able to speak about how she feels. It’s taken a long time to get here though.

@TheShellBeach keeping my fingers crossed for you and your DS.

Does anyone ever feel like they’ve got their life set up wrong? I spent so many years just wanting to be normal. I work full time in IT, luckily from home, but I hate it and I’m struggling every day. I’ve certainly had worse jobs for less money so can’t really complain but it’s starting to get really difficult just to start work every day.
Have my 2 DDs and DH, we bought a bigger house in a different area a few years ago but everything just feels so difficult. The house is too much, it’s not a mansion or anything but we can’t afford a cleaner, I hate living in mess and keeping it clean feels never ending. DH does his fair share of everything so it’s not like I’m doing it all.

I haven’t really got to know anyone since moving here and TBH I don’t feel like I have the time or energy to put into friendships as they don’t come easily to me and I find it exhausting.

I know I should probably be grateful for what I have but everything just feels so difficult and overwhelming. It just all feels wrong in some way. I don’t think I’m explaining it well but I don’t know how else to put it.

I used to work in IT and found it very tough. I now work in cyber security and absolutely love it. Everyone is “quirky” in their own way and my organisation is really chilled about quirks. My role is 95% wfh. Every so often I need to go into the office to sort something out. From IT to cyber security isn’t a huge jump - have a look to see if it would suit you.

I still feel as though “life” has promoted me well beyond my capabilities tho and feel overwhelmed an awful lot of the time.

I like my It job, especially now it's 95% wfh but found dropping to part time helped massively, especially now the kids are at school. It did mean having to give up the cleaner but by working 3 days I can mostly keep on top of it unless DD has a particularly appointment heavy week.

@LoveSandbanks I’m thinking of a sideways move so this might be worth looking into. My company was bought out by a large corporate and the bureaucracy is starting to creep in, which doesn’t help.

@Jules912 I would love to go part time but we can’t afford it at the moment. Hopefully I’ll be able to in the next few years.

Finally received my diagnosis today, I feel relieved and in shock but also sadness that at 41 my life may of been different if I was diagnosed sooner and had help. Instead I've been pumped with pills that did nothing to help me and told all the issues I have is just me exaggerating.

I ended up in a psychiatric hospital, misdiagnosed with a variety of conditions, none of which I had.

@TheShellBeach I think if it wasn't for the fact I had my daughter I would be dead right now due to nobody ever taking my issues seriously and misdiagnosing me with things I never believed I had. My mum always says she was surprised I didn't end up sectioned.

I did end up sectioned.

Years later, I saw a different psychiatrist who was shocked at the treatment I'd had. He confirmed to me that I didn't have a personality disorder, and I hadn't been psychotic, and should not have had the medication I was given for two whole years.

@TheShellBeach I have psychosis and depression but it's always been triggered by being overwhelmed etc which is now down to me being autistic not the avoidant personality disorder they diagnosed me with. I still take my meds for the psychosis as it does help but now I know exactly why I have these episodes it finally give me a lot of clarity. I'm just annoyed it's taken this long and I lost so much of my life wondering why I am the way I am.

Great thread

@TheShellBeach Thank you for your long and thoughtful replies and sorry it's taken me so long to get back to you - I have been in the process of moving house (argh!)

It's really good to hear your positive take on it...I want to get to that place! I think my boyfriend is coming from the view that it is hereditary and he wouldn't want his children to have it... it really doesn't make me feel great though.

I have the first two appointments for my assessment next week, having already cancelled them once. I have just added an ADHD assessment into it as well, but that's not till April. The whole process is three one hour appointments and I am going privately as the NHS wait for my LA is minimum 18 months, and my mum is keen to pay for it... Feeling quite apprehensive!

I was hospitalised twice as well, in my teens and twenties, but never received an accurate diagnosis (just lots of wrong ones, e.g. personality disorder, bi-polar). At one point I was put on anti-psychotics - totally inappropriate. It seems to have happened to a lot of us.

I’m fairly lucky in that I was never misdiagnosed or put on antipsychotics. I did see a psychologist at 16 who said I had autistic traits but not enough for a full diagnosis, but he wasn’t a specialist and I don’t hold it against him. I have been diagnosed earlier than many (early 20s), but it still would’ve been better to get the diagnosis earlier. But the past is the past and I can’t change it.

I was also given anti-psychotics, for over a year.

My menstrual cycle was completely disrupted - my periods suddenly stopped; and I felt generally unwell the whole time I took the anti-psychotics.

Eventually I rebelled and refused to take them.

Within two weeks I had a normal period. After another two weeks my severe depression lifted. I'd been under section, but I asked for it to be lifted, and for me to be discharged. About a month further down the line, I went home.

The damage that the wrong diagnosis, plus the unnecessary section, treatment and medication caused me was life-long and profound.

what kind of job title would you apply for if interested in cyber security or IT jobs ?

Does anyone here get PIP for autism? I heard it's impossible to be accepted.

If you have disagreements with people that you keep offending without meaning to and your spouse tells people that you have “problems “ due to autism “or your brain is flawed how would that feel ?

how can an autistic person stop impulsivity and blabbing eg when I argue with someone I like to tell my parents right away - initially it feels destressing but then i feel guilty about bringing my parents into it

Nah, both my young adult sons receive pip for autism - higher rate in both care and mobility.

I only just had my PIP claim awarded last month at enhanced rate for both elements. I'd previously applied 3 years ago (just before my Autism diagnosis) and had an absolute battle just getting daily standard care and no mobility. Went to tribunal and they wouldn't award any further, so put in change of circumstances once I had my official Autism diagnosis. I shouldn't have needed it, as my issues are exactly as described first time round, and meet the descriptors. I just don't think they believed me without the diagnosis.

To be transparent, I also have a connective tissues disorder, so I have physical health / mobility issues too, therefore it's because I have a combination of issues that impact me, that I've been awarded.

Second time round, I knew better how to fill the form in and deal with the assessment (I refused a face to face and was given a telephone assessment instead) I've been given an indefinite award, with a possible review some time after 2034.