Autism support thread
 

I'm sorry if this is a silly idea, but I often feel really alone when dealing with my autistic 'symptoms' because I don't really know anybody IRL who has it. I thought it might be a good idea to have a support thread on here for those of us who have it, but if its a silly idea mods feel free to delete.

popping in to say i don't think it's silly. <3

i don't know anyone irl either.

*waves* Hi autistic with ADHD here, I only mention the ADHD as I find it makes my presentation a little different to people without the ADHD and I have very little idea where one starts and the other ends :laugh:

if either of you are on twitter the #ActuallyAutistic hashtag is pretty good for finding other people, discussing experiences/symptoms, etc

I have (diagnosed by chartered psychologist not psychiatrist so on another waiting list) ADHD and probable autism (I love waiting lists).

It’s all fun and games being nearly diagnosed.

Is it ok if I post here sometimes?

Wow, this idea took off better than I thought it would haha!

Of course you can post Lio, everyone is welcome! Interesting that you've been diagnosed by a psychologist and not a speech and language therapist, I've never heard of that before both in my capacity as a teacher and as an autistic person! I found psychiatrists dismissed me and told me I wasn't, I only got a diagnosis just over a year ago.

Do people find that the world in general finds it hard to understand? I have lots of support from my friend V, and my family (in general with perhaps the exception of my father) but its the general public I struggle with. I also don't have many friends, and find it difficult to maintain friendships because I feel like I'm 'burdening' people'. Also would be interested to know if people feel younger than they are because of their autism? I often have meltdowns and things and am called childish all the time, would be interesting to know if anyone else feels like a child sometimes or whether its a separate issue in my case.

I relate Ali.

If I am in public/any situation with people, it’s a cliche but it feels like they have an instruction manual in their brains and I have a chewed puzzle book that got dropped in soup. No idea what I’m doing.

She was a chartered psychologist so qualified to tell me I meet the criteria for ADHD and to recommend an autism diagnostic assessment. I’ve been referred to the specialist service in my area but don’t know how long the wait is.

It's pretty much a mutual agreement among myself and my most recent two therapist humans that I have ADHD too. I've never done any official testing and unsure I want to. I'm 100% in support of self diagnosis, as are my current therapist humans. And yes, there's a lot of good talk and info going on over on Twitter, ironically.

I've recently started working with an autism/ADHD coach and finding it very helpful so far.

I don't tend to worry to much about what other humans think or understand unless it's someone I am close with, but I do often feel younger than I am and have definitely been treated like a child by awful providers.

Yes Lio! Both my brother and sister are 'neurotypical', have degrees and good jobs and can drive etc and for years its felt like they have life all figured out. I was always told not to compare myself against them (and everyone else) but its so difficult to not do that. I have a reasonably good relationship with both of them in that I can usually count on them for help and support etc, but they do sometimes get frustrated with me because they just don't get where I'm coming from at all. Its sometimes a lonely place to be because if I was neurotypical too, I'd be like them. I'm finding loneliness to be a problem lately, I sometimes feel so alone with all this and its difficult to get across how I feel to the point it'll cause arguments/frustration because the other person doesn't understand what I'm trying to say.

Claire (my autism support worker) suggested going to some of the activities they run so I could meet other autistic people, but I'm nervous of doing so.

I got awarded PIP today :)

Does anyone else claim it? I've never had it before. Obviously a good thing but kinda makes it feel real there is something wrong with me

yay well done!


I aplied in March last year, got zero points awarded n septmeber so currenty in the middle of a manditory reconsideration

Hazel (is it ok to use your name?) I applied in December 2020 so mught be waiting a while still. Also had to go to mandatory reconsideration after them stating there was 'no evidence' I had autism or mental health problems at all.

Wonder if thats just the norm?

I have been told most peopel get rejeced at first. I got some unexpected phonecalls last week and a letter asking to confirm my bank details so hoping I will hear soon


My assesment report in september came back with some really odd stuff, like my attending collee online meaning that I could travel and that "autism is a learnign difficutly not a disability". They also states that my mental health can't be bad as my medication were "only first line" not even sure what that one means :laugh:

I didn't read mine on advice of Claire (my support worker) so I have no idea what the report said, just that the letter said there was no evidence.

How strange! I wouldn't know what it means either haha

ah makes sense. I read it so I knew what points to argue against

Dix you get a service to help you with yours? If you don't get the MR, you can ask welfare rights to do an appeal for you but I do'n't know if its the same same in England. I'n told it is?

Hi everyone. Very recently been told I may have autism by a psychiatrist but waiting for the assessment (waiting list is 3 years long and dread being told its not that)..... was given a diagnosis of bpd a couple years ago but always felt that wasnt right. Autism feels more accurate (don't fit in, want to answer every conversation with ok but know its not right so mask a lot!) Right now I'm not sure. Work is hard and draining.

I've read that a lot of afab people can be misdiagnosed as having BPD. Which makes sense to me. I definitely was misdiagnosed as having BPD, among other things too.

I also read something a while back saying BPD shouldn't even really exist and should be removed as most folks with it would either fall under the autism spectrum or PTSD/complex PTSD, but unsure how I feel about that.

I had been originally diagnosed as autistic by my original psych but then I moved and had a different psych. The different psych diagnosed me with bpd traits. I believe the autism is correct as I suffered a lot with physical meltdowns a lot during my childhood/teenage years. I used to physically attack. I had seen 2 lots of educational psychologists by the age of 14. I also had obsessions (still have them!) which are intense. I also been told that I have black and white thinking which can occur in autism. I believe that I was only given my bpd diagnosis because of my SI. I am also noise sensitive.

The CAB did my application form for me but totally screwed it up meaning I had to hire a lawyer to help with my MR... so it was all a big mess. I don't really have much actual support, when I got my autism diagnosis I basically got given a list of books and nothing else, same with ADHD... and mental health wise I have "self guided DBT" and see my care corrodinator like once a month... so didn't really have anyone to ask

I got diagnosed with BDP for a while too, but after the autism diagnosis, and I have zero idea who by... I just saw it on my medical notes last year, apparently I was diagnosed with BPD in a year I didn't even see a psych so not sure where it came from... They removed it when I questioned it and pointed out that the traits were possibly the autism

Hazel, if you google autism charities in your arwa you might find stuff thats helpful - I got my support worker from autism initiatives, not the CMHT. Unfortunately the name literally has 'Scotland' in it so wouldn't apply to you but they should have an English equivalent?

Tbf, the only reason I get so much support is my area has a specific team at the CMHT for diagnosis and management, its the only one in Scotland as far as I'm aware (was the first of its kind at least when I got referred to them in 2016). That has disadvantages too though because the regular CMHT just dismiss any referrals to the specialist service apart from once in the summer when I had a massive breakdown as a result of being made aware of certain things in my past (can't say what because GSA) where they agreed to give me an 8 week course of DBT. Specialist service is groaning under referrals for diagnosis so they don't have any occupational therapists which is what I'm told I need.

Never been diagnosed woth BPD but it was suggested by my friend V as a thing because I lie a lot and have trouble with rejection and abandonment etc. The DBT course I'm doing is 8 weeks instead of the usual year because I don't have a diagnosis of BPD as far as I'm aware.

I contacted the national autistic soiety last year and they were basically useless, ended up asking me if I wanted to volunteer for them when I was trying to ask for support... they also made it fairly clear that there's like nothing support wise in York for autistic people who are either over 18 or dont have comorbid interlectural disabilities

However, the CMHT are providing funding for the local private autism service to give me 5 sessions in "how to cope with autism" at some point this year. WHich is something... And they are also going to liase with the private ADHD services to look into getting me on meds for that, so something is happening at some point at least, just no idea when




the self-guided DBT thing I was doing I think it what the CMHT make everyone here do, basically they sent me a load of links to "the recovery college" and every month meet with me to try a different mindfullness techneique... so far none of the mindfullness stuff has helped

What sort of mindfulness stuff have you tried? I might have a few ideas depending on wbat you've already tried

Can't remember the full list to be honest. I can't seem to visualise stuff at all so those ones are really hard for me, literally all I see with my eyes closed is darkness... and a lot of the other ones make my voices worse or make me feel sort if uncomfortable in my own skin if that makes sense? Been working through different ones since July and so far none have helped but care coordinator I convinced we'll find one eventually

Did you know colouring in and stuff like puzzles etc count as mindfulness?

I have heard that, but care coordinator has never mentioned it for some reason.
I do like puzzles, I have some number puzzle based apps on my phone that I use a lot.

I'm afraid I don't know much about specifics of support options in your countries. I hope it's still okay to keep posting here?

Just. Struggling today. Had a bit of a breakthrough with the coach human yesterday but struggling to put the things we discussed me trying into practice today and feeling v v tired and overwhelmed.

Thats strange Hazel! Literally the first DBT session we had as a group was a wordsearch for mindfulness lol, I love wordsearches. I also like doing sudukou and colouring in, I got an app on my phone that has disney colouring pictures lol.

Of course it is Camden! I'm sorry you're struggling. Is there anything you can do to try and give yourself a bit of respite from trying the new things? I wonder if theres like a lot of new things for you to try you could break it down and do one new thing a day or something?

lol i got overwhelmed and forgot to reply, sorry!

it's not so much lots of new things to try as it is that we just have so much school stuff to do, and so the new things to try to help with doing the school stuff. very overwhelmed.

maybe it's because my DBT stuff is self guided, my reading skills suck (was tested recently as having the reading speed of an average 8 year old and my comprehension also ist great) and the websites are interactive so my screen reader won't work on them. So it's very likely I am missing stuff... and then care coordinator may only feel the need to go through the "more complex" mndfullness stuff. Like we did a safe place visualisation recently, and a few relaxation things where you focus one part of the body at a time and force it to relax. I don't like those ones, make me feel very restless and on edge


That does all sound very overwhelming. IS this an autism coach you're working with? I've never had a coach so don't fully know how it works just that they exist essentially

I was going to ask about a text to speech reader but it sounds like you've already got that. Ugh. They need to make more accessible options.

I am working with an adhd/autism coach. They mostly just provide suggestions and strategies for me to try, and talk through like, what barriers and struggles I am having with regards to getting things done.

So for example I wasn't doing my cleaning because I was too overwhelmed, and as soon as I come home and sit down I get too tired and too distracted. But my cleaning routine sets me up for all of my other weekly and daily routines so it is really important to do. So they suggested putting things on my chair to remind me not to sit down and to get it done. Which has worked now two weeks in a row!

They also suggested a light alarm clock which I did get and am using, and setting secondary reminders and alarms to help me try to get to bed at a more reasonable time. All of which I am trying.

So with school stuff they gave me a few suggestions - a couple of apps as well as the suggestion of physical movement, and sitting somewhere different or in a different position. In combination with remembering that staying up late to get 2-3 hours of work done isn't worth the 6-7 hours during the day that I would have if I was able to stay awake.

So sleep and school stuff do tend to go hand in hand, but it's just I have so much school stuff to do as well as everything else plus all the things to remember to try.

That sounds good, Camden :). Are you finding them helpful? I like their ideas for trying to do your cleaning and school stuff.

Does anyone else have a problem with remembering more than one thing at once? For example, I keep forgetting to pick up my meds and other things and people are getting frustrated. Any ideas? To do lists and reminders on my phone don't work, I just switch them off. I did try to do lists for a while but found them overwhelming and I only wrote down what I needed to remember, not anyone else.

I do better with physical reminders and with planning specific days to get things done. So if I know I am out and about a day, I might think about what day I am near the pharmacy, and put a reminder to myself on my chair or next to my keys for that day - like a medicine bottle or something so that I know oh that is there because I must go to the pharmacy while out. Then carry it with you in your pocket or something so you can pull it out and go oh right must go there.

I quite enjoy a to do/goals list but I never write down literally everything I have to do ever, and if things are really tough my to do list often consists of things like
'get out of bed'
'stretch'
'brush teeth'
'don't beat self up if to do list is not completed'

As Camden said, for things that absolutely need to be done, physical reminders help - it's a silly one but I get my milk delivered, so if I store the empty milk bottles by the front door, I'm much more likely to remember to put them out than if I kept them in the kitchen. Verbal reminders help too for things that aren't every day. Alexa tells me to put the bins out every week, for example (though she seems to have forgotten recently, dunno why).

I recently started using an app called Finch. You set goals and it has breathing exercises and journal prompts etc, and by setting goals and completing them, you help your Finch grow and develop its own personality - my friend called it an emotional support tamagotchi :P
I really enjoy it and it can be really helpful because in a silly way it feels like I'm nurturing something by doing mundane tasks for myself. The only problem with it is the 'inspirational' quotes on start up but I've tuned them out.

there was fireworks tonight apparently because of a stupid (american) football game and we panicked because of the noise and it hurts my ears and my dog panicked too. an online friend said that fireworks are not ouchy to them and do not make them panic and it is not one of those things that other humans are just better at faking. apparently this is not a normal human thing?

From our general understanding from my siblings and other ‘normal’ humans, they find fireworks enjoyable and pretty. C (my brothers girlfriend) even said she wants fireworks at the wedding when she marries my brother, and we’ve been to weddings where they happened, like my cousins wedding a few years ago. So yes, my general understanding is that humans like them.

Now that the weather is getting warmer (yuck), does anyone habe any tips for dealing wuth the change in temperature, the extra noise and the increased light sensitivity? I used to just basically stay inside, but I can’t do that as a ‘functioning adult’. Anyone got any ideas?

Gosh that's all things I struggle with too and am worried about as well. Wish I knew but would also love any suggestions.

I know this is late as a response, and I'm still waiting for the result of my assessment, but I really struggle with the sensory side of things so I have some vague suggestions. For heat, I try to wear looser, clothes made of less heavy fabric than in winter. It also feels more important that they're soft/don't have labels or spiky bits, yno? Also it's much better now I have short hair. I have one of those insulated water bottles, and if I'm going to be away from home for a while I fill it with water and ice cubes and it stays pretty cold.

I have prescription sunglasses that I wear when I remember I have them :wow:

I've got some loop earplugs that help with the noise, though I can't tolerate things in my ears for too long, so I have to figure out whether the noise is worse than that or not. I also have big noise cancelling headphones which are great if it's cool enough.

I don't know if any of this is relevant as I may or may not be diagnosed with autism, but I do have a lot of sensory stuff.

Was anyone else's assessment super stressful and awkward? I just felt so scrutinized and basically panicked and forgot everything and misunderstood tasks etc. I should know the result in the next week but I don't know if my extreme anxiety might have skewed the assessment?

I have never been assessed, and I am sure it is different country to country. But I have done other testing things, and they do generally know how to read body language and test things enough to account for anxiety.

Also, I would argue that the fact you were anxious was part of the reason they were testing you in the first place. Yheres no ‘right’ answers to these sorts of things, you just tell them what you’re experiences are like and they form an opinion based on everything, not just your assessment.

How did it go, did you get an answer yet?

Thanks, both of you, that helps :)
I haven't heard yet, and am currently stressing out because I just spoke to someone from the CMHT and told him I'd had the assessment but I think he might have thought I'd said I was diagnosed, and now if I'm not diagnosed they're going to think I lied.

Stupid brain.

How long have you thought you might have it? Did someone suggest it to you, or did you always suspect something was up?

I've been vaguely considering it for a few years and a few friends have mentioned it - I got diagnosed with EUPD at 16 which I always thought was a bit sus. Then I started looking into ADHD and the psychologist who did my first assessment suggested I look into it as she specialised in both conditions.

It would make a lot of my life make sense, if I'm honest, but I really would like to know for sure. I'm hoping the letter will come by the end of the week - the person assessing me said it should come within two weeks and it's been two weeks now.

Hmm. I thibk the fact that you’re having these issues at all kind of siggests you do have it. Autism in adult women is chronically under diagnosed becaise it presents itself differently in men and women, and you’ll have developed coping strategies naturally to mask things amd make things easier. Hopefully the letter will come soon - are you having another appointment with the person who assessed you to explain the letter and what kinds of things are out there to help?

Fingers and puppy paws crossed you hear back soon. :)

By the way, just because another human misunderstood and/or assumed something from what you said doesn't mean you lied. It means the other human just did not understand. That is not your fault.

Thanks again :)

I think they said there was an option of going through the report with someone, so I'll see if it's mentioned in the letter.

That makes me feel better Camden, thank you.

I’d really recommend you do because they’ll be able to explain things in plain English and tell you what all the scores and things mean. It can be pretty daunting to read as they’re written from a medical point of view, and they also may be able to tell you what support and stuff is available in your area. I’d be lost without Claire, she’s a godsend but I feel limited in suggesting organisations and stuff because they’re different all over the country.