Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #19

[Galvantula]

Hope it's ok to start one without Polter

Previous thread: www.mumsnet.com/Talk/mumsnetters_with_sn/2954319-Neurodiversity-support-thread-for-women-with-suspected-diagnosed-or-self-diagnosed-autism-ADHD-and-other-NDs-18

The last one filled up a little while ago, hope everyone is doing ok.

Is he okay now? That happened to us over the summer. Terrifying.

Well I had a long chat with the uni autism support staff the other day - have filled in their screening forms to pass back to them to see if they think I warrant going on the list to see their psychologist (it's like a 6 month wait versus 2 years +) - not heard back since that but I know the lady was moving house at the end of last week so I assume she's been on annual leave.

They did contact the DSA people to see if they could get my needs assessment re-done to include mental health support - which came through incredibly quickly to be fair - I had it approved by student finance within the week for mental health mentoring. I think basically their line is to support me as if I AM on the spectrum regardless, but I'd like the question mark answered to understand myself basically.

What sort of support do you think you’ll get or want to get? My uni have offered help but I don’t know what to ask for. What sort of course are you doing?

Hello all
May I join. My daughter is currently on the waiting list for a CAMHS diagnosis of an autism spectrum condition (we have had an informal private diagnosis), and my son has dyslexic dysgraphia (and possibly ADHD). Helping them with these has led me to reading a lot about the conditions, and I recognise so much from my own childhood and life in general.

It took a lot to get people to believe that DD may have an ASC as she doesn't fit the stereotype, and I'm realising that I don't either. I appear very successful on the surface (PhD, senior job) but I find it almost impossible to focus. What happens is I look at lots of different things to avoid the thing I don't want to do, and then panic and quickly finish it when the deadline looms. Fortunately I'm clever so I can generally do a good job even though it's rushed. But I hate myself for it, and I'm sitting here right now writing this, but knowing that I have several big deadlines this week that will make me feel ill by Thursday.

I also see DD's anxiety about school; issues with eating in public; messy room; social anxiety etc. and I remember that was me as a child and as an adult. But I hid it because people told me I was lazy. Also, being at home wasn't always a safe space (my father was very violent) and I knew getting an education was my route out of that life - so I forced myself to go to school. And I didn't see friends after school because I didn't know how to do that so I was able to keep up with work even though I found focus hard.

In case it helps anyone else I work in a university so I may be able to answer some questions about support.

Ok, it's now two and a half hours since I started 'work' so I should do something beyond read email, and surf mumsnet

@Oddgirlout

What sort of support do you think you’ll get or want to get? My uni have offered help but I don’t know what to ask for. What sort of course are you doing?

I do speech and language therapy oddly enough - such an outgoing type of course for someone who is really struggling. It's adaptation to change and sensory overload I've found the big issues - especially since covid.

I have managed at least to get uni disability services on the case of the ridiculously excessive signage from an overload viewpoint (there are 5 giant signs on a stretch of 15 steps heading into the library shouting in yellow and black).

It's more a case of - if I can figure out how I'm wired - I can use that to explain to people like my mum that me saying something she feels is inappropriate is not me being thick like I thought it was - it's something different in my brain.

It is a relief to know I am not the only one having to rest for the rest of the day or the day before and after sometimes. Had part two of my autism assessment yesterday. I did not get to sleep until five am. Next week they speak to a relative. Then the week after feedback. Not sure if I get the results then. All done over the phone. Absolutely petrified. Mainly that I don't get diagnosed. I am also hypermobile so that ads in a whole new level of fatigue.

So many autistic people I know are also hypermobile!

It’s a real relief that I’m not alone in all these struggles.

Have been absolutely overwhelmed the last few days. DH has just done a covid test and has been feeling pretty awful, and I just can’t cope with everything on my own. It feels so pathetic but I only just about managed to fix dinner last night and the house was a complete mess. I just ignored everyone for hours.

I’ve found exercise, resistance with weights, really helps with hyper mobility. Sorry to hear about your dh, just get through the next few days. Anyone would find it hard doing the work of two people or doing jobs in the home they don’t usually do xx

That’s useful to know odd thank you, I’ve been trying to gradually add some basic weights into my exercise and this gives me extra reason!

Finding it so hard to be motivated atm though, does anyone else struggle big time with waiting for decisions/info? I feel like everything is completely on hold until we know the test result (although TBF with covid I expect most people feel like that) and I’m so overwhelmed by everything. I’ve been so angry and anxious today.

So desperate for my new prescription to come through. I have missed being medicated.

I do struggle waiting. I tend to obsess over that thing happening so much that I forget about the thing itself! So when I was pregnant I counted down every second and forgot about the baby at the end!
What medication are you on? I take sertraline x

I’ve been on many ADs over the years but I’m waiting for adhd medication now. When I was diagnosed I started on methylphenidate and it helped my focus loads but the anxiety built up after a while. I’m waiting for a different type of adhd medication now called elvanse

Putting a marking post so I can find this again later and update.

Hi there My dd is going through autism screening whilst struggling and being treated with an eating disorder undef CAMHs. Starting to strongly suspect I have it too. We had a session with the psychiatrist yesterday and I blurted it out when she asked her if she’d seen other family members with traits. Now really worried they won’t treat us seriously. They’ve said they’re going to start treating her with a recognition of her going through the screening but don’t know what that means in reality. Just worried that when I ask questions or get worried about something/ push for care I’ll be dismissed as the over anxious mum with autism iykwim.

Also are there any resources to help older women handle their own traits?

They really shouldn’t use that against you ivy if anything it would help your/her case!

Re resources I’m not sure specifically. There are lots of pages on FB and charities/organisations etc but it can really vary how good they are or if you gel with them.

I finally picked up the script for my new meds (Elvanse) today, so should be able to start them on Sunday. I’m so excited, but also nervous. There is so, so much riding on this. I’m worrying that because lockdown is so difficult, it’ll outweigh any benefit they give me :(

I relate to so much that has been written on this thread! I was diagnosed with ASD just under 10 years ago and the only people who see how much I struggle (and the extent of my stims/sensory issues etc) are DH and DD. I'm very lucky in that both are super supportive when it comes to my issues (DD also has ASD). DD is in year 11 and preparing for the sixth form and helping her has really made me think about my own education. I had a terrible time at school and missed about 70% of my GCSE years and barely scraped some passes because of it, I started college but because of family financial circumstances at the time I had to drop out and get a job to help out.

I've been having a bit of a mini obsession over the idea of going back to college on an access course and then on to uni to get a degree. I love learning about psychology/criminology/sociology(I've done many free courses via Coursera & open uni). So I've enquired about doing an access to psychology course at the local college (I'm also working through an open uni course on study skills) and I've gone as far as looking at what I would need to get into the local uni but I'm quite frankly scared to go any further with it.

The things that are terrifying me are 1 - What if I totally fail and/or don't get accepted on to the courses. 2-If I do I'm going to have such a massive debt and that scares me (I don't have any debts and never have), I know that it's not the same as a regular loan and it's wiped after 30 years (by which time I'll be in my 60's) but yes, terrifying! 3-I can get an adult learner loan for the college course which is wiped IF I then go on to uni, if not I will have over £3k in debt. 4- Even if it all goes to plan I don't think I'd be very employable and the area I'm interested in is psychology or something relating to it but how can I help other people when I have such terrible social skills! I regularly suffer from selective mutism and obviously, in new situations/around new people it's more likely to happen!

How have others who have gone to uni (or are currently there) managed? Is it hard? I just don't know if I have the intelligence or determination to see it through and as above even if I manage it, what are the chances of a career?!

I've come off my medication due to the pregnancy and honestly don't feel any different off it. Which is frustrating tbh. My doctor is really anti Elvanse and doesn't think methylphenidate works for me because of a trial I did a while ago where it had no effect. I've been reading about the titration process online and it's totally different to what he does so I don't know what to do. I am thinking about looking for another doctor, but there don't seem to be any!

I did a bit of uni but dropped out due to a stupid reason. I loved it honestly and it was brilliant for me having that structure again. I think you'll be fine.

I’m stuck with one psychiatrist too bertie it’s frustrating.

Hi az I can’t speak for face to face unis at all, I completely freaked out at the idea so never took my place at York to do psychology. I had no idea I was autistic then!

I did some OU when the kids were small and I’m hoping to start again this year but now with the knowledge that I’m autistic with ADHD, they have good support I’ve heard. I’ll be doing psychology with counselling I think, I also don’t know exactly what the end goal is. I’m full of anxiety tonight as I just enquired about a volunteer role helping families with new autism diagnoses. I know I’d be good at it from both a counselling and experience point of view, but my confidence has been so bloody low lately and I’m now feeling really panicky. But I need to take the first step (my autism work coach said she sees me doing a few different similar roles in a piecemeal fashion which I agree with).

I am three days into Elvanse. Not sure if I feel any different in the day but the evenings have been quite fraught.

I think another thing that I'm worried about is misunderstanding things and getting in a total meltdown over them. I'm worried that little mistakes/misunderstandings will wind me up and make me want to quit (like I did with the OU modules 10 years ago). I haven't even spoken with DH about it all yet, I know he will worry about the debt as it's a big commitment having so much debt for so many years and even more so if I can't handle it and drop out.

Singtothesky - I think you'd be good in the volunteer role as like you say you have the knowledge/experience, just make sure the place you are volunteering at are aware of your autism/ADHD and any limitations/struggles you may have.

I've often thought about doing something like that but again it's the selective mutism that worries me, when it comes to my DD I have fought so hard for everything for her - diagnosis, help at school, etc. I definitely think my mutism is overridden by my need to protect her, I just wish I could transfer that mama bear energy to helping myself. The last time I tried to do something face to face was for autism research they had myself and several other autistic mums around a table to discuss some new types of research they were planning. I was already so nervous but when they asked us to introduce ourselves, all the other women had degrees, PHD's, really good jobs and/or had written multiple books, I managed to say "I'm just a mum" and that was it, for the next 2 hours I couldn't speak.

Oh az that must have felt so awful :( I’d have been really intimidated in that situation. I hope they were at least understanding about it?

I actually found myself worrying about telling the coordinator for this role about my autism in the email - not that it was necessarily the right time to, although I mentioned the counselling skills course I did. But I worry that they’d assume oh well if she’s autistic she won’t have the empathy for this role 🤦🏽‍♀️ I’m verrrry empathic - and everything in me is leaning towards this kind of career, I’m very much the counsellor to everyone in my friendship group (and even my psychologist thinks I should be a therapist 😂). But maybe that’s tied up with the fact that the local autism scene is quite “autism warrior mom” IYSWIM and not so much for the actually autistic adults sorry waffling there. But anyway. Hopefully they’ll email back and I can find out more.

How is your mutism on the phone? There are various volunteer roles based on offering phone support, more so than ever right now (for example I was on the list for Homestart support, but because of lockdown my volunteer phoned me weekly as she wasn’t allowed to visit).

I think re your worries about misunderstandings etc show a lot of self insight and that has to be a good thing - knowing you’re prone to this is very mature IMO and even if it doesn’t prevent it happening it may mean it’s easier to deal with especially as they’ll be aware of your struggles in advance. As for the debt - it’s so different from debt run up by living outside your means (well done for not doing that, I am so bad with money I’m permanently in my overdraft!) and you don’t have to pay it back until earnings are high.

Would the access to psychology course be necessary if you did say an OU degree in it? TBH a lot of uni courses I looked at in psychology didn’t even ask for psychology A level. Maybe you could do just one module for now, not sure how the finance works though. Or if there are other places you’d like to study could you speak to them in a hypothetical way about what disabled student support there is? I’ll be ringing OU soon to discuss it before I actually apply.

Also if you want to try studying with a tutor as a next step (I have enjoyed futurelearn courses but I don’t find them as motivating as having an actual tutor and feedback) have a look at your local adult education service - mine have been offering free CACHE level 2 courses which are about 15 weeks and involve answering questions on the work which is then marked by a tutor. Not essays but getting to write about particular subjects (I did counselling skills and am now on “understanding children and young people’s mental health”). It’s given me a real confidence boost.

Right I’d best stop waffling and get up. I only woke up recently - my sleep has been bad enough lately but since starting the elvanse I can’t sleep till 3-5am it seems. I took today’s dose when I briefly woke at 9, which probably means it’ll be even worse tonight. Just hoping it’s due to getting used to them, and not a permanent effect!

I don't know much about selective mutism. Does it stop all communication, or just verbal?

For example would it be possible for you to write an email to your tutor/mentor/lecturer if you felt like that, perhaps from home later on if you didn't want to do it actually in a classroom session?

I think a lot of uni lecturers would be fine with that if so, and it means you can ask questions without getting stuck perhaps?

There should certainly be reasonable adjustments made. And one positive to come out of covid is that there is so much more in place for distance learning. So it should be even easier to accommodate your needs!

I’m feeling quite anxious and stuck in doom scrolling mode, and haven’t been able to get up off the sofa to get food.

SingToTheSky - They just carried on with the discussion and everyone chipped in with their thoughts, right at the end they offered tea/biscuits for anyone who wanted it and everyone just stood around chatting to each other. I stood for 10 minutes looking at my watch every 30 seconds or so before the head researcher came over and asked if I needed to go, I managed to say yes and she said I was very quiet and was everything okay. I wanted to scream at her where was that an hour or 2 ago and quiet?! my entire contribution over the 2 hours was "I'm just a mum"..instead I just said I was fine and had to go. The wave of relief when I got outside of the building was intense and I cried for a solid 15 minutes in the car before I could tell DH what happened.

Hopefully, the coordinator has some decent knowledge of autism and won't assume you have no empathy, it's sad how certain stereotypes about autism exist. It is very true that when you've met one person with autism, you've met one person with autism. My DD and I are very different, for example, I have no friends or social skills but she has quite a few friends and has developed her social skills enough to come across as fairly NT (she's a very good masker whereas I can't do it very well).

I'm okay on the phone as long as it's someone calling me, even with my own family, it's always my mum or dad who call me I never call them. When I need to make a call (for an appointment for example) I have to really psych myself up and have some things written down to keep me on track with what I need to say/achieve from the call.

I looked into the OU again as they had an offer on where you could study an access course for free with them. I wasn't eligible because I'd previously studied with the OU yet I didn't get any kind of qualification they were 10 credit modules, so I have 30 credits in total and no actual qualification. I'm not sure if the same kind of funding available at an actual uni is available for studying with the OU, I'll have to look into it!

I hope you've managed to get some food! I struggle with that as well, I'm very lucky in that I have DH to remind me of things or I probably wouldn't shower/eat/go to bed at an appropriate time, etc.

BertieBotts - The only way I can describe it is like being trapped in your own mind, using the example of the research place, I was aware of what was being said by others and had lots I could have contributed but I just could not speak. I don't know how to explain other than my mouth just wouldn't open and make words despite my brain shouting the words at me and to just say it (if that makes sense). It's nowhere near as bad as when I was a child, at primary school I didn't speak at all, I can remember one incident where my year 4 teacher was so angry because I wouldn't speak, she screamed in my face asking what was wrong with me and why I wouldn't just say something, that they knew I could speak so why wouldn't I. Even now I have to go over and over something in my brain before I can bring it up with others verbally and it's 50/50 whether I actually say something.

I think emailing the tutor after might be a good solution, that's sort of worked in the past for things. When DD was at pre-school I joined the committee, during meetings I just couldn't say anything, I would just sit and nod along, then afterward send a whole load of suggestions/ideas via email.

I would honestly be screwed without my DH. He’s clearly ADHD too but is better at a lot of the practical stuff so he can magically make dinner appear at 6ish whereas I’d be taking an hour to make the same pasta sauce I’ve done hundreds of times and the kitchen would be a bomb site. We did just get our new dishwasher though so that will help!

I had cereal again (not great as I also had that overnight when I couldn’t sleep).

I’m so different from both my older DCs too. And they are incredibly different to each other too. Yesterday DS (11) made an inference about a character’s feelings that surprised me when I was reading to him, and I was so pleased. But I realised that DD1, 13, would probably have looked at me blankly. And yet she would be labelled as higher functioning 🙄 because she attends school again now, is very social etc and DS’ autism is much more obvious to strangers. Granted she does have more learning difficulties too but it just shows the spectrum is not a linear thing at all.

I can’t believe they just left you to sweat out the two hours!!! That sucks. Anyone should have noticed. Now who’s lacking empathy! I guess they may not have wanted to draw attention to your silence but surely they could have figured some way of bringing you out for a chat, or even just a mouthed “you ok?” and a smile could make a big difference.

I’ve secured references for the role now so I must get on with filling the form in ASAP. There is a bit about my own needs so I will put it in there. Empathy is actually one thing I know I’m good at, and I’m perceptive - I’m always the one who notices when a friend is upset even if they’re hiding it, for example. I’ve realised that sort of helping people is what drives me so it’s what I need to find a way of getting paid for :o my degree will take 5/6 years so plenty of time to look into stuff I guess.

Right now though I just want to go back to playing piano and ignoring responsibility 😳😂