Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #18

[PolterThreadStarter]

As usual, latest support thread.

Welcome

I vanished! Anyone still around that I know. Obviously the first part of my username suggests who I was even without the 'ity' on the end!

Hi, I came upon this thread a few days ago and it has been very educational.

I have posted a few times on the mumsnet MH thread about my anxiety and depression. I have been referred to a psychiatrist, and am waiting for a psychologist appointment (very, very long waiting list).

Then I read through this thread and recognised so much of myself. So, I did a couple of online diagnostic questionnaires and got high scores suggesting that I may have Asperger's. I also looked at the Tania Ann Marshall list of traits of women with Asperger's and recognised so much of myself -
feelings of not fitting in,;
the way I feel socially awkward so that I observe people to learn social stuff like how to exit a conversation or say goodbye when I leave an event;
my extreme shyness and introversion;
my total inability to make small talk;
the way my family think I'm odd and tell me I'm too serious and to lighten up ( which does nothing to self-esteem);
my complete lack of interest in my appearance;
the way that loud environments and bright lights make me want to run and hide in a dark quiet place;
the way a last minute change of plan makes me so stressed out that I can burst into tears and stamp my foot in frustration;
the way I can't take notes unless I have the right sort of notebook and the right colour ink;
my strange obsessions which I can invest time and money in but then can drop as soon as I spot something that interests me more. I could go on, over 75% of the traits on her list apply to me.

Being on the spectrum would explain so many things about my anxiety and depression. So, I wonder if I should ask my GP or psychiatrist about having a proper diagnosis. I like my GP but I am so shy that it would be very hard for me to raise this with him. I don't even know if I would be able to be tested by the NHS, I'm 57 years old and well educated (PhD) so I think they may say that a diagnosis would be of no use to me. On the other hand I think it may help my depression and anxiety if I understand myself more, and despite having a good education I've always been in low status, low pay jobs because my social anxiety and lack of confidence.

I am interested to know what posters to this thread think.

Take the results of your AQ and the Tania Marshall list to your GP alongside a printed copy of your last paragraph, or even your whole post if you feel you can't sit there and ask for a referral.

I was surprised to find the reason the NHS waitlist in my area for the psychologist who did my relative's ASC assessment is because she only works for the NHS one day per week.
If I'd known that, I'd have asked if it was possible for relative to see her as a private patient which would have surely substantially cut down the round-about 2 year wait for the same person to do it on the NHS.

There are lots of options for assessment and some don't need the GP to refer. In my relative's area, an NHS assessment is only possible if there are no previous MH issues. That may not be true for all areas of the UK.

Do have a read through all of these Neurodiversity Support threads, there's some very useful and still current information in each one and it may help you to decide what type of assessment you'd like to have.

Very relieved to have found this part of the board.
I'm interested/desperate for diagnosis but terrified about it. I've heard of people being rejected because they're too high functioning or having to prove why a diagnosis is necessary.
What does count as a reason? I'm curious, because I'm so accustomed to my life and diagnosis won't make it go away.
My reasons would be my mental health (again, self harm doesn't seem as big a deal to me as I imagine it must seem to others if they knew), isolation socially, I'm desperate for a family and relationship but have no idea how to make it happen or how to cope if I had to live with someone or be in a relationship. It affects my studies- I can't understand instructions always, I can't organise my thoughts and it's really hard to put it all down in a coherent way. I do well, but the emotional and stress toll is huge.
Driving- I can't pass the test, I'm sure it has to do with this, I can't plan and have no memory of things and cannot process the instructions quickly enough as well as all the other information.
Social- I don't really have any friends, I don't know how to make proper friendships, I offend people and I don't know why, including family. I don't miss people so I forget to call or write or see them. I can come across cold. This then stresses me out because I've upset someone and I can't put it right.

But, I've had good jobs, I manage fu time uni and full time work and sometimes socialise. I sit with people at uni, I'm not the weirdo sat at the back rocking. I manage to make up stuff I do in my free time when asked, I get by.

Does anyone else feel they don't fit in the ASD category or the neurotypical world?
I don't seem to have any of the common traits - in fact in some ways I seem to be the opposite.

Hello all, just place marking really, so glad to have found this thread but am at work so will need to catch up at the weekend!

My DD is currently waiting for her ADOS and it makes me wonder so much about myself. But after finding childhood pretty hard, my life now is basically great (probably in some ways weird to an outside viewer, but great), so it's just curiosity (and the sense that it might somehow help my DD if I find out if my mental processes are similar or not). The NHS is so stretched, I don't feel I can justify asking them to do it when I don't need help. But maybe I could go private...

The thing is it would never have occurred to me that there was any question of me (or DD) being on the spectrum as there are many ways we don't fit (e.g. neither of us have what I would understand as a meltdown) - but then DD's lack of meltdowns doesn't seem to have been seen as at all important by the medical professionals who've seen her so far. And a lot of the Tania Marshall list fits. A lot. Which I know is not diagnostic but it feels like a weird coincidence otherwise.

Anyway, need to get DD through her assessment first before I make any decisions about myself.

Hello everyone

I thought I might join this thread as I'm currently struggling with a few ASC related things. I'm not expecting any responses, I'm just organising my head by writing this down in a safe place. If anyone does actually read this, I apologise for the length and the self-indulgent tone.

I've got my NHS Autism assessment on Tuesday. I was assessed in 2014 by Sarah Hendrickx who said "I absolutely do believe you have aspergers!" as soon as the questions were completed. I had an NHS assessment in 2009 but because I 'interacted fine' according to the junior psychiatrist at the generic mental health unit at the local hospital, I was told I only had a social anxiety problem.

I'm terrified of not getting a clinical diagnosis on Tuesday as usually people don't believe me. I have the Sarah Hendrickx report, I score mid 30's on the AQ test, I have a long history of obsessive interests, sensory issues, communication issues, select mutism, stimming etc. BUT, I mask very well.

I have a lot of support in place at the moment: a mental health care coordinator, DBT group, a dp who does most of the cooking, a cleaner who I pay for out of my PIP, all of which means that I have the energy to function as a parent and a part-time gardener AND look neurotypical while I do it. If I didn't have all that support in place, like I didn't 2 years ago, I would be an utter recluse who couldn't face going to the shops or make it to work, who lived on cereal and crisps when the dc were at their df's, and who was lost in severe depression and anxiety.

My experience of NHS mental health system is that you get treatment and support based on how inconvenient your behaviour and suffering is to other people, and right now I'm functioning pretty well. I have a mental health crisis every few years or so, usually in response to change (having dc, mutually agreed separation from exh), but sometimes it happens simply due to holding it together through regular daily living for too long without any respite. I'm in a cycle of being admitted into the care of the CMHT, discharged after a few months of support that enables me to recharge, then breaking after the support is removed and having to be admitted again. As I appear a very emotionally collected and restrained person, the severity of my anxiety isn't recognised by the HCP's, hence the admit, discharge, admit cycle.

My care coordinator does not believe I'm on the spectrum. She thinks Sarah Hendrickx must be a quack who makes money by taking advantage of vulnerable, mentally unwell people as she isn't an NHS clinical psychologist. She hasn't actually researched who Sarah Hendrickx is. If she bothered to look she would see that Sarah is hired at times by the very NHS that she works for to train HCP's, including psychiatrists and clinical psychologists, about autism.

I don't actually expect there to be any post-dx support, but I have a very small hope that a dx may break the admit/discharge/admit cycle, or at least speed up the process when I need admitting again. It's demeaning to be disbelieved by the people who are providing support, and it means the care they provide isn't appropriate as it is tailored for people who have curable conditions.

Home-life is tense and uncomfortable due to the presence of dp and his ds, my dss. They moved in 10 months ago and I am at the end of my tether. I want my house back. They create mess, noise and chaos and terribly strong smells (feet, aftershave, bo.) They do things in the wrong order and at the wrong times, or disrupt the way I do my things. There are strange teenage people traipsing in and out of the house at all hours when I just want to hide in my sanctuary. Even the sound of dp and dss eating makes me feel like screaming and cutting myself. I'm constantly on edge and I can't relax. They don't know the extent of my stress as I tell them that I need quiet time and withdraw to my room for hours so that I don't have a melt down. I try to keep most of my complaints to myself, and if I do have to address something I take great pains to be kind and considerate of their feelings. It's just not working though. There are other relationship things going on that exacerbate my sensory issues.

If dp and dss move out my ds's will have to deal with yet another family break up. I will have my house back and my alone time, but I will also have no support on the weeks when I have my dc, which will also affect them negatively as I get very easily overwhelmed by the demands of parenthood. If I ask dp to leave I will need a plan in place that will ease the transition for everyone, and avert the danger of a mental health crisis for me. Currently I feel that a crisis is impending anyway as I am high anxiety due to having nowhere to retreat to that is just mine any more, although it's a couple of months off. Ds1 is experiencing anxiety problems and I don't know how well he'll cope with another family upheaval.

you get treatment and support based on how inconvenient your behaviour and suffering is to other people

Nailed it.

Cheers

Hi all, long time lurker here. Finally took the plunge and convinced my GP to refer me for assessment (although she had no idea where to refer me to).

I keep reading about a MH gateway appointment to rule out any existing MH issues. Can anyone tell me anything about this? I find it quite confusing that an existing MH issue rules out an autism dx? When it comes to children with autism, camhs are always refusing to treat things like anxiety or depression because the kids have autism dx and MH issues are comorbid and part of the autism.

Obviously I'm anxious that my struggles with MH - anxiety/depression/etc - are going to derail my assessment before it even starts.

LiefievdM

I don't know about the MH gateway appointment, exactly, but I have been on and off the books of MH team for years and it didn't stop me getting an assessment. Flagged up by me, not professionals.

I was here months and months ago on an old account i deleted “bubblesagain” and then some bad shiz happened and I took some time out from social media as found it stressful and also wanted to stop relying so much on forums etc to help me make decisions but feeling much better and just wanted to pop in and say hi although thread seems pretty dead these days!

Can I join you all, please? I've struggled all my life with what I have started to realise (over the last 5 or so years) is ADHD, and I feel completely lost. I am so so tired of feeling overwhelmed by the general life admin and socialising that most people find easy as breathing. I feel so down on myself and frustrated.

Hi, RhubarbTea, I'm completely with you regarding the strain of socialising. I've reached a point where I only meet up with people I know well. I'm fed up of feeling crap about myself and small talk is exhausting.

Someone posted a link to a set of videos a while ago that showed young people on the spectrum how to behave in social situations. It was American, looked like to be set in a college and was really useful. I lost the link so if anyone knows what it might be that would be amazing

Totally feel the same about socialising, I have two good friends, one local and one not, which I am very grateful for as they are both lovely, supportive people who completely know me as I am and who I can be 100% myself around. But I'd love to meet more people like them and currently it's like finding a needle in a haystack.
I'd also love to see that video if anyone remembers the link.
I'm so cross with myself for not being able to manage things that I KNOW affect me, like washing up, tidying up and doing small jobs. I feel miles better when they are done and dusted (clutter and mess really agitates and distracts me) but I'll procrastinate til the cows come home about, y'know, DOING THE THING. Sigh.

Referral has been acknowledged by our local "ACCESS" team. I now have to wait for it to be assigned to a nurse, who will call me to do a telephone triage. Based on that, they will decide whether I get referred for assessment or discharged.
I'm really anxious now. I am terrible at talking to people on the phone. I find it so difficult to judge what the other person's reaction is to what I'm saying. I don't know when to stop or start talking.
Hopefully it is just a straightforward question and answer session..... Although I really hate being asked questions. Hate. To the point where I do things secretly (like further education), because I don't want my partner to ask me questions about it.
Anybody had this nurse triage phonecall/meeting?

I am surprisingly OK on the phone. I don’t like the anticipation, will put off calling someone... but once actually speaking I am ok.
Hopefully if they’re worth their salt they will anticipate that you may have problems with speaking on the phone... could you tell them straight away that you find speaking on the phone hard, or would that be out of your comfort zone? Being upfront about it may help.

Had the phone interview yesterday. I was literally shaking, I was so anxious. The guy was supposed to call me at a certain time and then called 25 mins late. Not helpful. However, he was very nice and clearly understood that adults with possible autism/aspergers/ASD/whatever you want to call it - depending on whether they are using DSM5 (only has ASD) or ICD10 (still has both autism and aspergers) - find things difficult that might seem straight forward to other adults. For example, he had no problem explaining in detail what the interview structure is going to be, what the possible outcomes are, etc. up front when I asked. And throughout he asked me how I am feeling and when I said I am constantly worrying how it is going and what the outcome will be, he just calmly talked me through it again. He didn't seem to have any reaction at all when I would tell him that I don't understand his questions either. Normally I just try to blag it when I don't "get" it, because I don't want people to think I'm weird or stupid.
Overall a good experience I think.
For anyone who is going to have one of these, the questions were along the line of the ones in this document: https://www.rcpsych.ac.uk/PDF/AspergerinterviewwUSETHISSONE.pdf
At the end of the call he decided that I do meet the threshold for further assessment and I am going in for assessment in person using some official diagnostic tool. He didn't mention which one.
Feeling pretty anxious about it still, as I really hate not knowing what to expect, but I am relieved to have at least passed this "gateway" interview.
He was a mental health nurse by the way.

Well done liefievdm. If that's the right thing to say? Thanks for sharing the questions also, they made me think.
A colleague actually suggested I have Aspergers recently, but they intended it as an insult and to mean that I hadn't done my job well... weird I think was what she called me...

Locally I've found out we have the option of doing a Skype assessment instead of face to face which cuts down waiting time and obviously helps deal with demand. I feel anxious about the prospect, I wonder does it have to be video. I don't do video chat... I'm anxious enough about trying to get through the gp to even be offered this assessment though. I can't see me ever having the courage. I feel I need support at university though and my uni doesn't want to know unless you're diagnosed with a disability or think you have dyslexia, they can't help unless it's dyslexia.. I don't get it..
Why do they make accessing assessment so difficult for people who struggle with this sort of situation??

I had the second screening assessment appointment on Friday. It was face to face with two mental health nurses. There were a few more questions; basically just verifying some personal details and checking that the previous nurse had asked everything necessary. And asking me again what made me request an assessment for diagnosis.

Then they told me to complete a paper AQ-10 questionnaire. This one: www.2gether.nhs.uk/wp-content/uploads/ASC-AQ10-screening-form.docx
It didn't have the info on scoring on the sheet that I completed, but it was the exact same questionnaire.

Today I received a call to let me know that based on the phone interview and the AQ-10 questionnaire (I scored 8), I will now be referred to the specialist team. The guy who called me today will call me again in 2-4 weeks to let me know whether the referral is accepted as is or whether more info is required. If accepted, if I understood him correctly, it would be an appointment with a specialist on the ASD team to discuss diagnosis and next steps.

It all seems to be progressing quite swiftly considering I only went to see my gp mid feb. Not that I am complaining.

I agree though. It is bloody confusing and my gp had no idea what the process is. Considering the communication and anxiety aspects of ASD, it would make a lot more sense to have some kind of online self-referral portal and possibly an option for a chat-type first interview, which could easily include the AQ-10 questionnaire. Obviously I get that at some point you need a face to face assessment. But perhaps these initial screening things could be made easier to access.

First hurdle cleared it would seem. My referral by the gateway Access team has been accepted by the ASD speciaist team. I am now awaiting another screening questionnaire and a letter to let me know what will happen next.
One step closer to clarity. Hurrah

Ugh.

I know I'm young, but sometimes the future really makes me worry about stuff. Like tonight my father is away so Mum and I got Deliveroo. She asked me to make the decision between a burger place and Wagamama. I hate making decisions, and said so. I just worry about making the wrong decision, etc... and this was over a fucking dinner choice!! How the fuck will I cope with much larger decisions later on in life??
Plus I hate the fact that nothing is certain in life and that there are no guarantees. Well, the only one is death, but even then we don't know when or how or anything... I'm not a control freak at all, but I prefer certainty (which is linked to the decision making thing).

Life is just not designed for people like me. It's not just making decisions and uncertainty, it's the stuff like socialising as well. I've posted before on here about never ever having done anything romantically... I just do not see that changing any time soon. I just do not see myself as attractive. I don't think I'm ugly, which is a plus. It's the personality side of things. I've said before about really wanting to befriend people, but just not being able to; my negative voice would jump in and go "what if you have nothing in common? What if they find you too weird?"
I acknowledge that I sound like I really need some kind of therapy, but the NHS is shit wrt mental health, and with private (we'd be able to pay) you cannot tell if they'd be any good, have much experience of those with ASD etc, it's such a bloody minefield. I just automatically seem to project an aura of fear whenever I'm in a social situation, particularly with people I don't know. First impressions count and if someone's first impression of me is that I give off a vibe of "fuck off and leave me alone" and I don't seem to make any effort to socialise, they're going to give up on me fairly quickly.

Ugh. I think about things way too much and catastrophise. My anxiety isn't as severe as some people's but I am just not living any kind of proper life.

Toffee I have the same problem with decision making, even minor things. I'm much better if I'm completely alone and doing it online, but if I'm with someone else (so trying to interact at the same time) I've got no chance.

Made a list, now wish I could just email it to someone like the gp and save all this having to go see them nonsense. Don't think I can do that. Would save them time if I could just send it over.