Paid Members Devon Malcolm Posted March 3 Paid Members Posted March 3 2 minutes ago, Chris B said: He has some negative influences we'll be trying to counter - but is there anyone well-known with autism that an 11-year-old might look up to? Best I've got so far is Satoshi Tajiri (the creator of Pokemon). Greta Thunberg? Quote
Paid Members Chris B Posted March 3 Paid Members Posted March 3 14 minutes ago, Devon Malcolm said: Greta Thunberg? He's quite invested in Palestine stuff, due to Kneecap, so that might actually land pretty well - thanks. Quote
deathrey Posted March 3 Posted March 3 (edited) For your sister, there are some wonderful accounts on Instagram made by parents supporting children (or now adult children in some cases) with a diagnosis/awaiting a diagnosis that have helped me muddle through the maze and feel 'seen'. Happy to DM you them if your sister feels they might be helpful Edited March 3 by deathrey Quote
Paid Members I Bent My Wookie Posted March 3 Paid Members Posted March 3 1 hour ago, Chris B said: Just found out my nephew is going through assessment at the moment, and they've told my sister it's very likely he'll be diagnosed with autism as well as ADHD. Knew about the second, but while the first is a surprise, it does make a lot of sense. He has some negative influences we'll be trying to counter - but is there anyone well-known with autism that an 11-year-old might look up to? Best I've got so far is Satoshi Tajiri (the creator of Pokemon). They may still be a year or two too young but Chloe Hayden is an Australian Autistic Social Media person whos done Ted Talks, released books and pushed for more prominent and correct representation of Autism in the media be it film or TV. I only say a few years off as her show Heartbreak High is more at the Skins level of teenage representation than say your Degrassi's or for a UK alternative Grange Hill, and her book Different Not Less really delves into some difficult topics about Mental Health, SA, just not an easy read but perhaps one for your sister to have a read of as it gives good insights from her own mother who's also a speaker and advocate on Autism/Disability Needs. They regularly do talks together. Some people may recommend Paige Layle. Canadian autistic vlogger, some of her views have been seen as counter productive in that she is coming from a low support needs background trying to explain that her low support needs compared to someone with high support needs should be considered equal and the same. Its all very murky water and at times can feel like its ganging up on someone due to their look and success they've made versus people feeling marginalised and pigeon holed. ADCArtAttack does some really cool, vibrant YouTube videos that are relatively stress free and enjoyable as a background watch as well and I'd say worth a check out. Quote
Paid Members Chris B Posted March 4 Paid Members Posted March 4 (edited) 18 hours ago, deathrey said: For your sister, there are some wonderful accounts on Instagram made by parents supporting children (or now adult children in some cases) with a diagnosis/awaiting a diagnosis that have helped me muddle through the maze and feel 'seen'. Happy to DM you them if your sister feels they might be helpful That'd be awesome, thank you. 18 hours ago, I Bent My Wookie said: They may still be a year or two too young but Chloe Hayden is an Australian Autistic Social Media person whos done Ted Talks, released books and pushed for more prominent and correct representation of Autism in the media be it film or TV. I only say a few years off as her show Heartbreak High is more at the Skins level of teenage representation than say your Degrassi's or for a UK alternative Grange Hill, and her book Different Not Less really delves into some difficult topics about Mental Health, SA, just not an easy read but perhaps one for your sister to have a read of as it gives good insights from her own mother who's also a speaker and advocate on Autism/Disability Needs. They regularly do talks together. Some people may recommend Paige Layle. Canadian autistic vlogger, some of her views have been seen as counter productive in that she is coming from a low support needs background trying to explain that her low support needs compared to someone with high support needs should be considered equal and the same. Its all very murky water and at times can feel like its ganging up on someone due to their look and success they've made versus people feeling marginalised and pigeon holed. ADCArtAttack does some really cool, vibrant YouTube videos that are relatively stress free and enjoyable as a background watch as well and I'd say worth a check out. This could be really useful - thanks. I'll take a look into those. Edited March 4 by Chris B Quote
Paid Members BomberPat Posted March 4 Paid Members Posted March 4 I spoke to my GP a couple of weeks ago, and was referred for a remote Autism assessment via HealthHarmonie Minds. I've done the initial questionnaires they sent me, and the wait time is apparently about six weeks; Right To Choose working out for me there, as a purely NHS assessment had a waiting time of around four years. No idea if HH are any good - seem some bad reviews online, but more about the ADHD side of things, and it's an area where I think you'd only been inclined to review if things went tits-up, right? Some friends have kind of joked about how I'm probably autistic for a while, and I always kind of brushed it off, or got a bit defensive - it just seemed like people being too quick to medicalise behaviour - though it turns out a few people had asked my partner if I was, and she said she had her suspicions. After a while of thinking, "okay, so even if I am, what differences does it make now?", I started listening to the audiobook of Pierre Novellie's Why Can't I Just Enjoy Things?, which is all about Autism from the perspective of a comedian who got diagnosed in his 30s. There's so much in there about how being able to recognise and understand certain thought patterns and behaviour helped him, how learning how other people simply aren't processing social situations in the way he does was instructive for him, that I figured finding out for sure either way was probably worth the anxiety. I'd always kind of brushed off the suggestion that I was Autistic because, even though I didn't see these traits in my Autistic friends, I was still operating with a really outdated mental image of what Autism was, with ideas of lack of empathy and difficulty socialising properly, and of meltdowns and extreme reactions to sensory issues. But getting a better handle on different symptoms of Autism that I recognise in myself - shutdowns rather than meltdowns, finding small talk almost physically painful, disordered eating or just not caring about what I eat, disproportionate emotional reactions to certain situations - and being in a position to talk about those things, and learn that my usual kneejerk response of, "well yes, but surely everyone feels that way..." is actually very rarely true, has all been really positive. Quote
DavidB6937 Posted March 4 Posted March 4 The NHS stuff has definitely put me off from pursuing anything for my own diagnosis. I really should do something about it, as the more I read about others the more I painfully relate to so much of it, but yeah it's kinda taken a back seat for obvious reasons the past year. Right to Choose seems great but I'm terrible with choosing! Quote
Paid Members BomberPat Posted March 4 Paid Members Posted March 4 4 minutes ago, DavidB6937 said: Right to Choose seems great but I'm terrible with choosing! In fairness, I barely chose! My GP turned her screen around and said, "there's these three options, this one will be quickest, shall we do that?". I'm sure I could have asked for more information on them all, but I was happy to just go along with her suggestion. Quote
Members SuperBacon Posted March 4 Members Posted March 4 (edited) My youngest is going through assessment at the moment. Initially I found it really difficult to come to terms with, not that there's obviously anything wrong with being autistic, and I'll be honest I still don't know why I found it hard, I just did. I suppose it's just being protective. Her school have been absolutely fantastic and accommodating, I cannot fault them at all. And she's got out of drama and dance lessons, and now helps the teacher, so she's happy enough. Edit: forgot that when my youngest was initially assessed my ex said to me "I'm amazed you've never been through this process" I said just because I can instantly tell you who won the 1992 Cup Winners cup and who scored in the final (Bremen and Alofs and Rufer) doesn't necessarily mean I'm autistic Edited March 4 by SuperBacon CWC was the best Quote
Paid Members I Bent My Wookie Posted March 4 Paid Members Posted March 4 From my parents point of view when I saught out my own diagnosis at 20, they felt a little put back that they just hadn't realised or moreso fully grasped just how difficult I found things that came naturally to others and instead just thought I was shy and unsociable (if you've ever met me when my brain isn't in rot mode this was never further from the truth). It's a natural thing I think, both from a protective point of view, because now more than ever you want to try and make life easier for them and it adds its own stresses for everyone, but also just ensuring they are seen and heard. Its fantastic the work you've put in already though by the sounds @SuperBacon, and getting the school on board as quick as you have will make the world of difference too. Quote
Paid Members BomberPat Posted March 4 Paid Members Posted March 4 (edited) My parents are the only area where I still have a fair bit of anxiety around this; I haven't told them yet that I'm exploring all of this, and I'm not entirely sure how they would take it. My Dad, as politically sound as he is on a lot of topics, I can easily see having a bit of a kneejerk "oh that's nonsense, they just over-diagnose stuff these days" reaction to it all - and then going back to his model trainset and room full of books on World War 2 naval battles - while Mam I imagine would be very supportive, but also beating her up over things she could have done differently if I had an earlier diagnosis, and neither are conversations or reactions I'm particularly looking forward to. I have a really dismal memory, so questions about how I behaved as a kid are some I struggle the most with, and I would probably go to my brothers over my parents for some of that. I do have a really distinct memory of being on a school trip, sat on the bus, chatting away to someone while facing straight forward at the seat in front of me, and a teacher having to tell me that if I'm talking to somebody it's polite to actually be looking at them. Edited March 4 by BomberPat Quote
Paid Members I Bent My Wookie Posted April 5 Paid Members Posted April 5 Any of our neuro spicy (sorry, really sorry) folks had any issues with being unable to regulate annoyance? I'm not an aggressive or violent person in any way, but recently in life, work, sleep, day to day, I'm just finding I can't deal with humans and situations like I used to, that just about everything pisses me off or twicks my wick. Just looking for any recommendations on calming techniques as I know most times people aren't trying to piss me off so I don't wanna be mean back. Quote
Paid Members Jazzy G Posted April 6 Paid Members Posted April 6 I think it's frustration at the way the world doesn't take us into account. Things that should be straightforward aren't, and it's frustrating. Just breathe and take your time. If people know you, then they'd hopefully accept your needing to compose yourself. Quote
deathrey Posted April 7 Posted April 7 (edited) I don't have a massive amount of advice to be honest @I Bent My Wookie. I'm not autistic (that I know of) but have ADHD and I get like this when I'm overstimulated or overwhelmed. I lack any kind of patience with people and will end up losing my temper. The only successful thing I've found is taking a time out, as in literally taking myself off to a quiet room or the bathroom and having 5 minutes of peace and doing something I find regulating then I can take myself back in to the situation. When it's people I'm particularly close tonight just tell them I'm over stimulated and just need to be left alone and they are quite good at giving me some space to regulate but obviously, things like that are difficult in work and more public settings where I have to recognise and impose my own time out. I'm not great at taking breaks or pacing myself, I'm an all or nothing type person so recognising that I'm dysregulated and taking time out has been a learning curve. Doing things like physical activity - going to for a walk or the gym when I'm working from home - helps to keep me regulated and avoids me getting to the point where people piss me off. Edited April 7 by deathrey Quote
Paid Members BomberPat Posted May 12 Paid Members Posted May 12 some advice would be appreciated from anyone who has been through assessment before: My second stage assessment is booked with HH Minds, and they have requested that either I bring an "informant" (someone who has known me since childhood) or ask them to complete a questionnaire ahead of time. One of the reasons I went with HH Minds is that I was led to believe that they could do the assessment without an informant, so it's kind of blindsided me. I haven't spoken to either of my parents about getting assessed, and I don't know how they would react, if I'm honest. The thought of talking to them about if makes me quite anxious. But I don't really know anyone outside of my family who has known me since I was a child I can do the questionnaire. Does anyone have experience of trying to go through the stage 2 without an informant? It surely can't be unusual for a potentially autistic person close to 40 to not have someone in their life who has known them since infancy? Quote
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