Autistic women assemble!

[Nepmarthiturn]

...only if and when you're not feeling antisocial and want the entire world to +%$¥ off, or course. 😉😆

A few of us were talking on another thread and thought it would be nice to have a support/ chat thread on here to share interests/ challenges/ parenting issues or whatever we feel like. A little community of autistic women on here that we can dip in and out of but will be supportive and friendly and people who actually get it.

Might also be a nice counterbalance to all of the horrific posts about autism that we find here so regularly!!

P.S. Have deliberately posted this in chat rather than in the ND Mumsnetters topic because it will hopefully reach more people who would like to join in. I didn't even realise that section existed for a long time and often miss threads there as they don't show in active and expect I'm not alone in that. However, in posting this here, we will be relying on the people with obnoxious and ignorant views about autism who so regularly post on Mumsnet, to demonstrate to us their allegedly superior empathy (ha!) and please just leave this thread alone: it's not for you. Many thanks!!

I'm so exhausted, we went shopping as DD wanted to look for some little collectable things she's taken a shine to, we went into so many shops looking for them. Then when we got home the zooplus order had arrived and it took me over an hour to sort through/pack away all of it as well as the shopping we got. I was going to continue with my coding course this afternoon but I'm so tired I know the info just won't stick so thought I'd come on here instead, so nice seeing so many others joining in and reading about all of your experiences.

@Dobbyatemysocks Dobby is adorable! 😍

Ooooh there was a very interesting thread about this type of stuff a while back. And a discussion at my support group once. About how people think.

I always found it really odd when people mentioned the "voice in their head" or "internal monologue". I assumed this was a figurative expression and they weren't schizophrenic. 🤣 But apparently lots of people do actually think in words, as in their ideas are actually in their mind in words. And I guess text would be similar?

Then discovered some people think in images. I have images in my head (also then discovered aphantasia was a thing and some people cannot conjure an imagine in their head at all!).

Mind totally blown by all of the above. My thoughts are just a whirling mass of "concepts" I guess. I have to make the effort to translate them into a language to say/ write them, and often the language isn't precise enough so it's hard to find words that fit.

So weird, again never even occurred to me until I heard others talking about this that the actual "media" if you like that people's thoughts are expressed in was different in different people's minds. Another rabbit hole!!

Sounds like a tiring day to me! Definitely good to have some rest rather than try to force yourself to study when your brain won't comply, would just be immensely frustrating and fruitless!

I am trying to prepare myself for dinner/ bedtime marathon part of day with tired children. 🤯🤯

I am visiting my parents tomorrow. I rarely visit as they live in another country. I have a knot in my stomach as I know I will be masking and feel highly stressed with them. They are lovely, but also rather stand -offish . I felt like an alien in my family growing up, although it is quite obvious that they present quite a few ASD traits themselves. I think that everyone felt awkward with each other, and still do. I hate visiting, because I am anxious when I am back with them.

I hate going away from home, I need my routine and things around me. So I am basically counting the days until I am back home, even though I haven’t yet left.

Thanks to those who shared stories about living with trauma and how this impacted on the diagnosis process.
I think I've been reluctant to put myself in a position where I could feel invalidated by a professional because of my trauma and what one of you said about symptoms can be both autism and PTSD was enlightening.
Thanks you 💐

hello I'm new to the thread. 33, diagnosed adhd last October but I also think I'm autistic and have thought so for a very long time. An adhd assessment made sense because of medication but now I also want to seek an autism assessment.

I'm just scared of being dismissed. I was diagnosed with BPD at 23 due to multiple suicide attempts, self-harm and childhood trauma. I dont SH anymore. I've never had a fear of abandonment and I avoid friendships because i dont understand people. I just don't understand social cues. I follow other peoples lead on body language and always feel like I'm pretending in social situations because my whole time at high school I was called rude when I didn't intend to be. I feel I always have to watch what I say. I feel like a child when I talk about dinos. Then when I get home I feel exhausted. I had 'tantrums' when I was a teenager but I think this was probably a meltdown from being overwhelmed.

I experience a lot of sensory issues both avoiding and seeking. I have special interests in dinosaurs and also in psychology and the brain. I stim a lot. I work full time but I feel underemployed and want to do an MSC.

The worry is that when I asked for a second opinion of bpd 10 years ago I was told that not agreeing with them was a sign I had it. What if I get an assessment and they laugh in my face and tell me I'm attention seeking which is typical bpd behaviour (actual phrase used by a psychiatrist). What if I'm imaging it and making it up for attention?

The mental health services and psychiatric hospital traumatised me tbh more than any other trauma I've experienced.

My gp has told me that my referral won't even be accepted because the threshold for adults in my borough is too high. Working full time is automatic refusal of referral. I'm barely coping tbh. I can't afford private and I already used right to choose for adhd but I just need to know.

Sorry for the essay.

Hi. I'd like to join the chat too if that's ok. I was diagnosed a few weeks ago and I feel like my head wants to explode with all the information/self analysis I'm doing! So much about me for the last 40 years is making so much more sense now but it's all a bit information overload.

We (DH and I) only really realised at the end of last year that I was probably autistic after years of struggling with various things and then being in what appears to be burnout since last summer so it really is all a bit new!

Nice to know there's a reason for it all though and it's not just because I'm "weird" or "a bit rubbish"!

The worry is that when I asked for a second opinion of bpd 10 years ago I was told that not agreeing with them was a sign I had it. What if I get an assessment and they laugh in my face and tell me I'm attention seeking which is typical bpd behaviour (actual phrase used by a psychiatrist).

Absolute classic psychiatric epistemic abuse there. I've heard your story from so many women with autistic sons, autistic brothers, autistic fathers, or later diagnosed as autistic themselves.

TBH I don't know whether you'll be able to get an assessment with the referral criteria the way they are now, but what I would do in your position is argue that as someone with a high-risk psychiatric history who has needed to access secondary mental health services in the past, it's vital for any future service provision that if there's an underlying neurodevelopmental disorder other than ADHD, medics have access to that information, and that this assessment should be done now, not when you're in crisis.

yes I probably agree, however I don't have the energy to fight because they never listen and use the BPD label against me.

I would prefer to save myself even if it takes me a long time and see someone who specialises in autism in women than go through mental health services. My GP did offer to refer me to MH services and get the autism referral that way, but I declined. I've been traumatised too much to and can't risk that when I'm managing. They always used BPD against me.

The psychiatrist who assessed me for ADHD said it didn't sound like I ever had BPD at all, but of course the label will remain on my records and used as a black mark against me for the rest of my life.

I can empathise, Dino… where in the country are you? NHS ASD diagnostic services tend to cover a large area — it could be that someone in your area has experience with your regional service, and knows whether they're competent at assessing women who have been misdiagnosed with BPD.

Where I am, the assessment service is provided by the same trust as CMHT provision (meaning they have access to all the historical psychiatric notes and can read them through an ASD assessment lens), and referrals to the assessment service do go via local adult mental health services, but the assessment service is actually run separately from general adult mental health services, by neurodevelopmental psychiatrists.

I know several women where I live (including me) who have had their ASD diagnosed by that service, with a note in the report saying that their existing BPD diagnosis is unnecessary and appears to be incorrect, as their difficulties are accounted for by autism.

Whatever you decide to do, I hope you can get to a place where the BPD label no longer has power over you… I know how sticky that label is, and how it can affect the way you're treated when you're struggling, and even the way you think of yourself (you said "What if I'm imagining it and making it up for attention?" and it's heartbreaking that psychiatric gaslighting makes us doubt our own motivations and thoughts this way). I'm sorry all of this happened to you. I'm also a survivor of psychiatric trauma and I feel for you.

I was diagnosed with autism when I was pregnant with my little boy who will be 2 this summer so that has gone really fast!! I’m also awaiting an ADHD assessment but waiting lists are really long for that so it’s probably going to be years before I even get contacted to start that.
My little one probably has autism too but can’t go down the assessment route yet as he’s too young. He has been referred to speech and language as he can’t say any words and doesn’t seem to understand anything we say to him but the waiting list for that is really long too… at least he’s a happy little boy 😊
Yesterday was far too much for me as we visited both sets of grandparents 😴😴
Today hasn’t been too bad but we were late for his gymnastics class as he got upset at the food pantry which meant we were there longer than we should have been

I am in SE London, and ASD assessment services for adults take place at one of the large psychiatric hospitals by neurodevelopmental psychiatrists. However because I work full time and appear to be coping on the outside, my gp said the referral would be rejected. One threshold for referrals means you have to be struggling to maintain employment and I am, even though I'm constantly burned out.

I guess the only way is self funding a private assessment.

I might be imagining that what I experience is related to autism anyway. It's probably all linked to adhd.

Thank you for listening

I feel like a terrible parent. 😔

Signed my son up to a holiday club for this week. He can't manage the ones at his school even for two hours after school so I have to have nannies but this one is really different: at a private school, small groups, two of his closest friends going as well who have been before. Lots of choice and downtimes and lots of his favourite stuff like riding bikes and swimming so thought it would be ok for him to try and he was excited about it.

The thing is he so does want to join in with this stuff, but then gets overwhelmed. And it's such a fine balance then between giving him the chance to try new things and engage socially, but not pushing him beyond his limits and causing him distress. I had a big chat with them beforehand so they were aware of his difficulties and using "now and next" charts so he knew what the day would be like and what would happen, a quiet sensory area for him to go to reset, etc. They seem very on the ball about supporting autistic kids (wish I had the money to send him to that school not just for a holiday club!!!!!).

Mon he was very keen to go and had an amazing day. But afterwards said the day was so long. Tues he stayed home, was completely exhausted. Today he wanted to go because it was bike day and he loves bikes (unlike his mother who still can't balance on one in middle age...). Then he fell off his bike and hurt himself. He was so upset and said he wanted to come back but then they comforted him and he was happily eating lunch with his friends and they said he seems happy, running around and playing so don't come early. And I listened to them and didn't go. And now tonight he's distraught that I didn't go and collect him when he had told them he wanted to come back, he'd just shut down and pretended he was fine and thought I didn't care because he'd told them he wanted to come home and I didn't come to get him. 😞😭

I never expected him to manage the whole four days and told them I can come to get him any time if he's had enough, obviously I kept him home yesterday as he needed downtime. But when they said he'd been upset today I should just have gone and got him. 😥

You’re not a terrible parent at all! You paid for him to attend even though you didn’t know if he would like it just because you thought there was a chance that he would and he did! You gave him the opportunity and to want to go back again he must have really enjoyed it!
It is a shame about the bike incident but you weren’t to know as they told you that he was fine. You weren’t there, you couldn’t see him or his reaction and you didn’t know. How old is he? What is his understanding like? Can you sit down with him and explain what happened and why you didn’t go and get him early?

@StopGrowingPlease he's just turned 6. He is very academically bright, but struggles a lot to express his emotions. And is also quite traumatised by his father disappearing from his life suddenly when he was 4. He's so empathetic, so kind and sensitive. Even when his sister hits him he never hits her back, not once. But when he's upset he just goes into shutdown, even with the teachers at his school that he knows really well. He never tells them when he's overwhelmed, it all comes out at home. He trusts me, and my two nannies who have a very close bond with him and he adores, and adores his sister (nearly 5), but the real him is hidden from everyone else. And it takes such a toll. Maybe I pushed him too far with this. 😓 He loves it in some ways but in others it's too much. I'm going to have a day just him and me next week which is rare as a lone parent so I hope that will help, I can love bomb him and we can build lego and do garden stuff together all day.

I try to do the right thing but it's so hard to judge sometimes and at times like this I suddenly see I've got it so wrong and hurt him. He already has to deal with his sister who has PDA characteristics and controls everything and dominates everything because of her anxiety and I think he really needs more of my time and more 1:1. But I also have to work to pay for our home and their childcare and everything else, and have physical health issues too so am clinging on by my fingernails tbh, trying to not push my health over the precipice but also meet their needs financially as well as physically and emotionally.

I have given him lots of hugs and talked to him and told him that in future I'll make sure it's really clear to the teachers that if he needs me and wants to leave he just needs to tell an adult and I'll come straight away. I just feel like I made the wrong call and let him down and reinforced his view that the adults in his life don't do what he needs and won't listen to him, that he doesn't feel safe.

When I was trying recently with school to get adjustments in place and he was so distressed, hiding in his room and refusing to go to school, banging his head on the wall, I told him I was going to sort it out and he said "but they won't listen mummy". 😓 He gets so anxious, that nobody is listening, so is worried now to even stay at a birthday party without me. He was worrying the other night who will look after him and his sister if I die. Heartbreaking and not stuff a 6 year old should have on their mind. I wish I had twice the hours per day so I could be a better parent.

Aww sounds like the teachers misread the situation. He was probably "happily eating lunch with friends" etc coz he thought you were on your way. That's on them not you though.

Sounds like a good plan to have some lego and gardening time. And having a chat to the teachers.

Sounds like you've got an awful lot on your plate.

I'm not good at advice but sending hugs.

I feel the same, very Lovely to see though

I've had that with my daughter's; supported them to do something outside of their comfort zone, that they really wanted to try, with a club they were already part of. I promised would fetch if they were unhappy, agreed support needs and accommodations with the staff etc. Got to pick up to find one child in meltdown because the staff decided they didn't need accommodations really until they were totally overwhelmed and it was too late and the other in shutdown because the staff decided that they won't call me to fetch because they seemed fine.
I was furious and my daughter's never wanted to attend the club again.

Thank you. Yes, it is all quite overwhelming a lot of the time. Had so much to sort out the last few years with divorce, moving house, getting the children's diagnoses, dealing with school, my own health issues etc.

I think that's exactly it, he thought I was coming. 😔

I have reassured him that if he wants to come home tomorrow he can tell them and I'll make sure they tell me and I'll be there straight away. He seems to want to try again for the last day, with that in place, bless him.

Oh God that's awful. Just awful. No wonder you were furious and that's so sad that it put your daughter off going at all. How utterly appalling that they completely ignored everything you'd told them about their needs. 😡

@Nepmarthiturn That sounds really tough, for both of you...but I've got to say that from an outsiders perspective you've handled it amazingly well. We all make mistakes/misjudge sometimes, but you've reassured him and he feels safe, enough so that he's decided he wants to go back again. Don't beat yourself up over this, you sound like an absolutely lovely, caring and thoughtful parent!

@Nepmarthiturn That sounds like such a difficult situation, it's so hard navigating what the best thing to do for our kids is (especially when they are little) and when things go wrong we feel like the worst parent ever. If it helps it gets easier as they get older as you can explain things/ they understand better and can sort things themselves a lot more (plus having a phone when older means instant communication with them to check in).

Ha, I say it gets easier, I am again exhausted this time due to a lack of sleep because of DD who is almost 18 needing my help at all hours last night. She needs to take some pills over the next few days for a medical issue, she has a lot of medical-related trauma and finds swallowing pills painful (both physically and mentally). It's noted on her records that when she needs yet another round of antibiotics it has to be in liquid form, unfortunately, the medication she needed can only be taken in pill form (and cannot be split or crushed). She put it off all day and then just as I was about to get in bed(11pm) she asked if I could sit with her whilst she took it, nearly 2 hours later and still no further forward (just lots of crying).

I finally went to bed after she said she would do it alone, just after 3am she woke me up because she needed help cleaning up (she'd vomited a lot, one of the side effects), she also ended up needing lots of reassurance that the meds will be in her system and she won't have to start all over again (and then another thing and another), she kept me up for nearly an hour. Then one of the cats woke me up at 6am and I couldn't get back to sleep (and seemed pointless considering I had to be up at 6.45).

I am not good when I haven't had at least 7 hours sleep, I get ill, grumpy and more sensitive to everything (so overwhelmed a lot easier). I've managed an hour of my course but my brain is starting to feel hazy so I'm going to do some housework soon as I don't need to think/remember stuff in order to do that (I say that and then will end up getting distracted by a million things and before I know it it will be late afternoon ).

Thank you. He was a ball of anxiety last night and slept in my bed but seemed much happier this morning. Made sure the teachers all know that he only has to say once that he wants to come home and they'll call me and he heard that conversation so feels secure. He's excited to swim there today so fingers crossed it goes ok!

Oh no @camelCase that sounds so difficult, your poor DD. So frustrating they can't give it to her in liquid form. You must be exhausted. And then cat waking you up as well! 🫣🫣 Hope you can rest a bit today. Or an afternoon nap? I know some people hate sleeping in the day but I love it, it's the only time I have dreamless, restful sleep. Just rarely get the chance. Do miss that part of the kids being babies and napping when they napped!!

Hahaa yes about the phone, I was thinking exactly that last night, will be so mucj easier when he's old enough for one and can just message me directly. Will probably help a lot with his anxiety about being away from me, too. I think it's so important for him to get comfortable with doing things independently, but he finds it very hard.