Neurodiversity support thread: Women with suspected/self-diagnosed/diagnosed ASC & ADHD

[EauRouge]

No sign of our own forum yet, so for now here's a new support thread for women on the autistic spectrum and/or with ADHD. Newbies more than welcome!

The old thread is here.

Here are some helpful links for newbies:

List of female AS traits by Tania Marshall.

List of female traits by Everyday Aspergers

Musings of an Aspie- Cynthia Kim's blog (one of the few sources I have found about being a parent with Aspergers)

Autistic Women's Collective

Recognising ADHD in women from ADDitude Magazine

Resources for women with ADHD from ADDitude Magazine

Adult ADHD support (coming soon by the looks of things)

Books

Aspergirls by Rudy Simone

You Mean I'm Not Lazy, Stupid or Crazy?!: The Classic Self-help Book for Adults with Attention Deficit Disorder by Kate Kelly (I haven't read this one but I have heard it recommended many times- apologies if it's no good!)

I took off Tony Attwood because it was about people with autism rather than for people with autism. Anyone else got any book recommendations?

Online tests

(Online tests are not 100% certain but can give you a very good idea and a starting point for talking to your GP if you're seeking diagnosis)

RDOS Aspergers quiz (the best one IMO)

AQ test

ADHD test

ADHD questionnaire for women

If any of those don't work, it's because I'm cooking the DDs' dinner and I'm shit at multitasking. What's that burning smell?

Polter
Good luck!

Polter Yaaaaaaay!!!!!

steady there seems to be a tipping point, past which a meltdown is inevitable. The key is recognising when you're on the way and reducing your anxiety somehow. Maybe removing yourself from the situation, doing some sort of exercise to get rid of the adrenaline, stimming, listening to music, indulging in your special interest. However, once the meltdown has begun it really has to run its course.

I struggle to recognise when I'm on the way towards a meltdown, and even when I do recognise it I can't always make the right choice to reduce my anxiety, my cognitive abilities get overridden and I get caught up in a vicious circle. So it might be worth making a meltdown plan with someone who knows you well and can recognise the signs, agree what intervention you will try and the other person will try and calmly direct you towards it when they feel it is needed. It's something I thought about but haven't put in place yet as my meltdowns are a lot less frequent than they used to be.

I have a weird toe thing going on, thought I'd ask here in case this is a common thing.
I can feel my little toe all the time, and it's annoying, and to make it feel more comfortable I have to keep moving it and tensing my foot, but i don't think it's anything physical, it's like I've got into the habit of doing it and can't stop.
It's been going on for over a week now and it's really getting me down. The side of my foot feels "wrong" if I don't do it, but when I do my foot starts aching.
I'm sitting still at the moment, and I keep twisting and jerking my foot around to try to make it go away.
Any ideas?

Good luck Polter

Not sure LeChien but I might be experiencing something similar right now. I've had the bottom of my right hand resting on the table for ages as I'm on the computer, and now the very bottom of it over the bone feels horribly uncomfortable, I can feel the pressure of the desk on it constantly and so I'm moving it about. My hand is not touching the desk now I'm typing, and I can still feel this nasty pressure feeling there. I want to scream.

I get overwhelmed (sensory wise) occasionally, don't know if it's a meltdown or not. Last time at a house gathering after church. In retrospect, don't know why I went. Well I do, everyone else was going and I wanted to chat with my friends and not be on my own. But I had no idea it was happening until alf an hour before it started, it involved loads of people in a few rooms, all noisily chatting, and it's noisy chatter that's the most noticeable kind of noise for me. I could feel the anxiety building, I could feel the change where I start 'feeling' the noise in a different way, and did I leave? Oh no. Ended up feeling absolutely overwhelmed. Like the noise was a physical thing pushing me from all sides, unbearably claustrophobic, started crying and couldn't stop. Then felt so mentally and physically drained it was a massive effort to get back home again (public transport). It's such a physical experience, even though outwardly there's nothing to see except a crying woman. Last time before that was when I was in a Hyper U in France. Again, didn't need to have happened, but none of my younger siblings would go to help our Dad with the shopping, so I said I would even though I had misgivings. I mean, it's Hyper U! It's bloody enormous and packed with people. Never go there. I ended up running out (not really a choice, it was run or sit on floor and start crying), so I wasn't much help at all.

I haven't read Cynthia Kim's book but I bought it for someone else who is waiting for autism assessment now, and she says it's fantastic so I might have to borrow it back off her to read.

That's it, a pressure, but it's like an overwhelming need to tense my foot/toe and twist it to move the toe.
I used to stretch my mouth wide open when I was a child (which must have looked odd), it feels like that, only in my toe. Just talking about stretching my mouth makes me want to do it, so I'm having to do cats bum mouth to make the urge go away!

I don't think I have meltdowns as such, or can only really relate to it on a couple of occasions, but I know exactly what you mean about feeling overwhelmed. I get this in crowded places, and usually end up leaving, or having to take a breather for a bit. It's a strange feeling though, like pressure going upwards through my head. I get this when I'm stressed and people keep talking to me or asking me things, I do wonder if this is how ds feels, only he doesn't back off, he lashes out. I usually make an excuse to disappear for a bit.

I get the picking thing, and I squeeze my fingers and toes, and move them so they feel stretched, which is a nice feeling.
I've also found a weird chin feeling, if I push my chin out whilst pushing it back with my hands at the same time, it feels lovely! No idea what that is :)

ISaySteadyOn
I am now reading Nerdy Shy and Socially Inappropriate too, Straycat. I think I have a milder form than she does, but last night I realised I actually do have meltdowns. I can't think of another way to describe how I felt last night so I wanted to ask what do you do when you feel you are going to or how do you prevent it from happening or is that impossible?

I don't think i realised what was happening to me were meltdowns until i started reading more about Aspergers.
For me it is generally triggered by I guess, feeling overwhelmed by emotion and out of control of the situation.

It feels like Im going to explode inside and usually i end up crying hysterically, i can also lash out at people and say hurtful things if I perceive their behaviour to be the cause of my frustration. I am often inconsolable and distraught feeling like my world is ending but then several hours later if I go for a sleep or distract myself with tv etc I feel completely back to normal.

Sometimes it isnt even the final thing that has happened that is completely responsible, it may be a cumulative effect of several "smaller things" and then the last of these tips me over my coping mechanisms.

Because I am now aware that these are meltdowns as such, I am learning ways to try and deflect them or at least do damage control.

For example, one thing i struggle with is if someone says they are going to do something, ie meet up with me (so mentally i am already feeling anxiety about doing something out of my routines) Then they cancel at the last minute, even if its a genuine reason. Because I have been psyching myself up for it I can break down sobbing and lash out and say things that hurt them because from my point of view its a massive thing to have been going outwith my comfort zone even if it was just for a coffee.
I am learning now that even if I am sobbing and feeling hurt and confused to walk away from my phone or computer for several hours to allow myself time to calm down so although I am still having the meltdown, I am hopefully not ruining a friendship as such by replying to their message with a ranting hurt over the top reply. (not sure if any of that makes sense, cant seem to make it succinct)

Sometimes if I am feeling overwhelmed and if I can get away, then that helps as well, going to sleep for a few hours in a darkened room helps, if I am in a group of people sometimes I have gone and sat in the bathroom to give myself a break or gone outside and pretended Im taking a phone call.

Sometimes and Im not sure if this is a meltdown or not, but sometimes if something has happened, I cannot cope and its like I shut down, I cant talk to anyone and I have been accused of being in the huff and sulking when in reality i just cant cope with the flood of emotions.

Being aware that a meltdown is pending can be good in that if you can realise that is what is happening to you, sometimes I can tell myself that my thoughts are irrational and to breathe slowly and that this too will pass.

Not sure if any of that is helpful or not x

stray shutdown is the right word I think, it's different from a meltdown but also comes from being overwhelmed. I find I tend to shutdown in public more and meltdown more at home.

Slightly random, but I got a concessionary swimming card from a leisure centre near me. It said it was available to people with disabilities and also to people receiving PIP/DLA/ESA so I figured that I didn't need to be on disability benefits to be eligible. However, I am now nervous that someone will read my application form and decide I'm not actually disabled and take my card away and prosecute me for fraud! I mean, I know AS in general fits the legal definition of a disability, but I look and act NT the majority of the time, so maybe they'll think it doesn't have a substantial effect on my day to day life and I'm not actually disabled by it? Especially as I checked my other local leisure centre, and they only offer a concessionary card to people on benefits so I'm not eligible for one from there.

You see, I personally wouldn't class my Crohn's as a disability at all, as I'm not substantially affected (at the moment, my meds have it under control). It's only recently that I found out that it is still a disability, as if your condition is kept under control by meds, the effect it would have without the meds is what counts.

Another dilemma!

I am planning a trip to a local farm park. They advertise a discounted rate plus free carer for guests with SNs. I emailed to ask if AS would qualify me and they replied to say 'it is for guests who would not be able to visit without a carer, you are best placed to make the decision'

Now technically, I could visit on my own quite happily. But I would struggle taking DD on my own due to anxiety, I might be able to get through the visit but I would be tolerating it for DD's sake not enjoying it myself. Or depending on the day, I might find convenient excuses to myself not to go after all, such as the weather, or feeling ill.

So because I could go on my own (unlike say someone confined to a wheelchair who needs help with the toilet) I don't feel able to claim the discount. But then I think about PIP and the fact that a family member gets it because although they can walk, it puts them through physical discomfort, and I think that is similar to me, I can do things but it causes mental discomfort.

I mean, just the fact that I'm obsessing over these things probably means I'm entitled to the help!

I do tend to say I'm autistic when just talking to people, or ASD when filling out generic forms. However, the only official documentation I have is my diagnosis letter which states 'Asperger's syndrome' so I feel any situation where I will need to present that, I need to call it Asperger's! Apart from anything else, a layperson might not know that Asperger's falls under the ASD umbrella, and so they might think I was pulling a fast one if I say 'autism' but my documentation says 'Asperger's'. Especially as I 'don't look autistic' to people that don't know me well.

Hope you have fun with your developmental history, I love doing 'projects' like that, just try not to let it become an obsession!

That's what I did Polter as if I didn't write it down, I would just forget. I found we only covered about a half of it anyway, there was so much.

I'm really excited about your assessment! I remember on the original thread how you just couldn't take that step and now you have. Well done.

I went this morning to what I thought was a mental health assessment. But it turned out to be an assessment to see if I pass the threshold to go forwards for ASD diagnosis.
I feel a bit stupid, I was all geared up to be open about how I'm feeling (depressed and anxious), and it wasn't the right sort of appointment.
It was helpful though, the nurse I saw did explain that because there have been so many things going on in the last few years that I'm probably overloaded and need to find techniques to help me relax and sleep better, and to give it a few weeks to see if that can improve things.
I did pass the threshold, so now have to decide whether to be referred for assessment or not.
I don't know what I want to do. On the one hand, I don't work (although youngest starts school soon and I can't realistically sit at home doing nothing, even though that's exactly what I want to do!) and maybe a diagnosis won't make a difference. On the other hand, I don't know, it could be good to have an official confirmation of why I find things so difficult sometimes.
I'd be really interested in others' opinions about this, and what you would do.
I know if I was reading this and someone else had written it, I'd be thinking "go for it" but it's different when it's me, and I don't know what to do.

That's what worries me Polter, although I would be referred to Wakefield or Sheffield, which both have better reputations than the area I'm in.

For me, I had to get official confirmation before I felt I could start treating myself 'as if I had AS'. Bit I will admit, I was far more scared of being told I didn't have AS than of being told I did. I think I would have gone for a second opinion, or argued with the professional as to why I thought they were wrong and I did indeed have AS, though! (I did lots of research before I even considered going for an assessment)