I’ve been reading about “stimming in autism”, which up until now was very confusing to me mostly because that’s the one point kept being repeated in the community being a must for an autistic individual. And I can’t relate to that at all.
Then I came across something that describes the purpose of ‘stimming’ is to deal with extra energy. Then it kinda hit me, I’ve never had the need to stim because I’m a low energy person in general.
I get overwhelmed with activities when they involve raising heart rates (yes, THAT too). I like quiet things, dead of night etc. Once at a time in my life, I was pretty sure I could hear flow of electricity.
So my question to the #ActuallyAutistic community: do you think stimming is a must for autistic people? Do you relate to it? Anyone know of any low energy stimming that gets overlooked?
@farah@actuallyautistic Also, I think it’s worth sharing that the few times I have brought up my skin picking to my doctor (before knowing it was a self regulatory behavior) it was dismissed as something I should “just stop doing” instead of something to be evaluated further.
Later I discovered that dermatillomania is severely understudied and generally not taken seriously by the medical community, much less considered to be a sign of autism. Take that as you will.
"I was an Autistic psychiatric inpatient: Here’s what I would change in the mental health system "
Autistic people are exposed to inordinately high rates of trauma and mistreatment. It is unsurprising then that a large portion of us develop mental health struggles. Where there are concerns around mental health, there are also issues regarding inpatient treatment, both voluntary and involuntary, under the UK’s Mental Health Act.
Burnout is a bitch. I think all of us who have experienced it, or are experiencing it, will agree with that. But, how it presents and how long it maintains its hold over us, seems to be as variable as so much else about us.
I can now recognise the many times I have experienced burnout in my life. Each one marked by my constant refrain of, "I'm just tired" and with me doggedly plodding on with my life as best I could. Even now, in the deepest and longest burnout of my life, I am still doing the same.
Of course, I at least know to try and pace myself now. To let the unimportant things slide until their time comes and to spread out what has to be done, to the best of my ability. I know to dedicate time to self-care, to rest and recreation and to acknowledging my needs as an autistic person. This much, realising you are autistic can teach you. It can also help you to spot the signs of burning out sooner and hopefully mitigate its effects that way.
When that's possible, of course. For what caused my current burnout was unfortunately a series of overlapping events that I could not avoid, or do anything about. It was almost as if life chose to keep throwing things at me, each more intense and impossible to avoid, until I broke. But then life can be like that sometimes.
Autistic burnout is, of course, different from normal burnout, in what causes it and how it presents. It is, more often than not, a breakdown of our ability to cope with the demands being placed on us and not with how much we can carry. We are used to carrying insane loads and with having to work so much harder than most other people, just to keep putting one foot in front of the other through life. In fact, I know that I never really rest, not even now. My life is one long and continuous assessment and checking on whether the routines I have in place are being maintained. Whether I have done everything, on what needs to be done and finding new ways to blames myself for why it hasn't been done yet. There is no such thing as not working as far as my brain is concerned. And because I never stop, I don't know how to stop. How to heed the signals of tiredness and exhaustion and how to not knuckle down and continue anyway. It has been the story of my life. In work and everywhere else, always push, push, push.
And perhaps this is why autistic burnout is so common and possibly even inevitable. The sheer effort that life already is. The constant raggedy edge we walk just to get through a day and how in doing this day after day, all we end up doing is teaching ourselves to ignore the warning signs and that our needs are even important. And end up learning instead, that all that really matters is the next plodding step, no matter the load we are already carrying.
@pathfinder@actuallyautistic I was chatting with a friend earlier and during our conversation I realized that my most recent burnout started in 2017 - peaked in 2021 - and I am just beginning to emerge. It’s the longest but not the worst. Knowing what it is helps, for sure. Having a community, even when I’m mostly silent, also helps. 🌟
Unpacking the dishwasher and then making my bed with one hand.. because I'm holding a bag of oats in my other hand.
Why? Because I have adhd and got distracted before making breakfast, so I've been carrying oats around the house for the last 20 minutes without noticing.
One time I tried to explain something to a family member that doing a specific thing was hard for me, and they said " Yes but Bob's nephews can do it so you should be able to do it too" . 🙄
PSA: If you've met one autistic person you've met one autistic person.
This could be the connection between Ehlers-Danlos and neurodivergence. (People with EDS, like me, are 7 times as likely to be autistic and 5 times as likely to have ADHD -- also like me.)
Why Not Circumcise Your Boy? A Potential Link to Autism
Even if culturally common in USA, parents should think twice.
By Darcia Navarez, PhD
"studies to date have not adequately evaluated the disparate male to female autism predominance because of inadequate study design -- failure to control for confounding of outcomes with circumcision (which should be part of any future well-controlled neuroimaging/epidemiologic/epigenetic studies of ASD / comorbidities)."
I've just finished watching the first series of "A kind of spark" on BBC iPlayer. Although, this is not about this excellent show. Rather, it's about the struggle I had with watching it and why it took me two attempts to get through it.
The fact is, that found it quite triggering. Now I know it's about, and probably made for, teenagers and the struggles they go through at school and especially being autistic and at school. And even though school was a very long time ago for me and in another age of man. I still couldn't help comparing it to my own experiences and not just in school, but throughout my life, and how much similarity I could see. Not, in the details, obviously, but in the way I would constantly run afoul of people, or somehow be on their wrong side of someone, even before we'd properly met. The sheer pettiness of some of it and the hurt it so often caused me, as much by my not understanding it, as by the unfairness of it. Of how many toes I'd stood on, without meaning to, or even knowing I'd done it and how much of my life I'd actually spent bewildered and upset by the situations I would find myself in and the actions I couldn't understand of the people around me.
Of course, no-one, least of all myself, knew that I was autistic back then, because that would probably have made it much worse. But knowing I am autistic now, at least gives me an understanding of why some people might have reacted this way. How, in some ways, at least, I've never really behaved in the ways that others might find appropriate, to their position, or status, or sense of worth. How socially blundering my way through life, of necessity, includes many toes I could step on and people who could be offended.
But, of course, understanding this now, doesn't really ease the memories. Neither of the pain I did cause, without meaning to, or the pain I received. It doesn't make the life I've had easier, only easier to understand.
And that, in a sense, is what this show made me have to face. That no matter how privileged my life has been. How much easier I've had it, compared to so, so, many others. It's never been easy. There have only been moments, brief and sometimes, admittedly, not so brief periods where my life seemed to make sense and I felt, if not entirely in control, at least in somewhat of a comfort zone. That I was OK and that I could just get on with doing things my way and just being myself. Not without cost, of course, normally in hard, unremitting, work and effort. In often struggling with feelings of guilt and shame about how selfish I was having to be. Because, that was what carving out my own world felt like. Not necessary, or even justified, but selfish and almost petty of me.
And then, of course, there would always be something that would intrude from the outside world. As often, as not, something petty and officious that would dump me back into the turmoil and uncertainty. Because, you can never really isolate yourself from the world, as much as some of us would love to. And so much of this world really isn't made for us. It will always be hard and there will always be those who delight in making it harder. Those who are truly petty and selfish, in the ways that we aren't, and others who will try to use that hate to benefit themselves. It's why carving out our safe spaces will always be difficult, but also, so very necessary.
@pathfinder@actuallyautistic thank you for sharing this perspective. I was on the fence about watching it (using a new app can be, all by itself, an overwhelming proposition) but I think I want to now.
the self reflection/auditing of my life with this new knowledge can be difficult. I dont want to "dwell on the past" but it's important for me to understand my own story, especially bc I spent so much of my life very intentionally pushing parts of myself and my own story way down
@seanwithwords@actuallyautistic
Yes. I think many of us became masters at suppressing and disassociating ourselves from the truths we knew, in order to fit in. Not exactly healthy and whilst the past is the past, it's the sort of thing that festers if it's not dealt with.
Our 4-yr old dropping tonight that some of his friends at school have autism wasn’t near the top of my list of things he would randomly drop. It’s clear his teachers have approached this with a lot of care and empathy and he’s really intrigued and excited that he has friends whose brains, well may or may not work the same as his and that he’s lucky to have friends with autism… I was probably 25 the first time I heard the term at all #autism#ottawa#kids
If you were waiting to buy my in-depth history of #autism and #neurodiversity, NeuroTribes, it's now really cheap at Amazon. The New York Times called it "Beautifully told, humanizing, and important." https://a.co/d/fDNysnr
@stevesilberman mandatory reading for anyone with an interest or stake in the topic, highly recommended for all readers of historical/scientific nonfiction. I read very widely in that category and consider Neurotribes to be a top shelf example of the form.
@mrcompletely@stevesilberman
Absolutely agree! A non-fiction book so well researched and written that is as captivating as a novel. NeuroTribes takes a difficult subject that has been clouded with vauge assumptions and shines light upon its history with great clarity, insight, and compassion.
I highly recommend this book to anyone interested in the fascinating connections and interactions of human consciousness.
Spring, ffs. There are songs, even symphonies, glorifying birdsong written by everyone from Paul McCartney & Fleetwood Mac to Frederick Delius, Vaughan Williams, & Messiaen. But, I swear to god, if you're neurodivergent/misophonic, some bird 'song' is the aural equivalent of being waterboarded.
Foreskin Morbidity in Uncircumcised Males
Sneppen and Thorup, Pediatrics 2016
"In our patient population, we found that 7.2% (95% CI 3.4–11.0) were diagnosed with autism spectrum disorder (ASD) as a concomitant disease (Table 3). A recent Danish study calculated the prevalence of ASD in Denmark to be 1.5% among boys."
Association found between ASD and childhood penile surgeries. This is reference 1, next toot has #2.
Ritual circumcision and risk of autism spectrum disorder in 0- to 9-year-old boys: national cohort study in Denmark
Frisch & Simonsen, 2015 J. R. Soc. Med.
"We confirmed our hypothesis that boys who undergo ritual circumcision may run a greater risk of developing ASD. This finding, and the unexpected observation of an increased risk of hyperactivity disorder among circumcised boys in non-Muslim families, need attention"
Two different research groups have now found a relationship between early childhood penile surgeries and autism spectrum disorder. The two different studies had different goals, different recruitment approaches, different study variables, and yet the relationship between ASD and circumcision remains quite striking!
For boys undegoing penile genital cutting before age five, the risk of ASD is even higher.
Gran: “He’s never done any of it in a malicious way. Why didn’t the school system put in more filters, or firewalls, to prevent children from getting into that?”
County Spokesperson: "Threats to over 100,000 students’ safety, including hacking, will be met with the full force of the law and applicable District policy."
HACKING IS NOT A CRIME
ACKING IS NOT A CRIME H
CKING IS NOT A CRIME HA
KING IS NOT A CRIME HAC
ING IS NOT A CRIME HACK
NG IS NOT A CRIME HACKI
G IS NOT A CRIME HACKIN
IS NOT A CRIME HACKING
I’ve realized it’s physically impossible to demonstrate how to ride a bike when the only bike available is one for 8 year olds. So anyway, he took to it quite well. Sat on it, wore the helmet with no sensory issues, even peddled forward-ish some of the time and steered. Balancing is going to be hard to teach. He’s sort of kind of got the concept of “brakes” but I wouldn’t trust him to use them. #autism
I am constantly feeling overwhelmed. I can't believe there are people who struggle the same as I do in situations like floods and wildfires, or trying to stay alive in places like Yemen or Syria or Gaza.
Much to my shock I realised that I could be autistic when I was 53, roughly 7 years ago. And it was a shock, even though I suspect a very small, well hidden and very much ignored part of me, might have suspected. No one told me about it, or suggested that it might be the case. I did not see myself in relatives, the way so many of us do. I just happened to come across an autism test online and for no particular reason, took it.
It was that, that started me on my path to realising and finally accepting the truth that I was autistic. But, looking back, I sometimes find it hard to understand how I didn't know earlier. So much of my life now, just screams autism at me. But even ignoring the horribly ableist and medieval view I had of what autism was, the main reason why I didn't was probably because I could mask, both from myself and others, so well.
It was, I realise now, a life lived in denial. A denial of how much things bothered me, how much effort I had to put into things. Even a denial of the things I knew I couldn't do. Because this is the thing about appearing to mask so well, for so long. It is, in a sense, a lie. I couldn't mask well, if at all. Not all the time. Not in all situations or circumstances. There were things I just couldn't cope with, or even begin to deal with. But the trick was, that I either knew about them, or learnt the hard way about them and then I could manage my life to avoid them. Because they were things I could live without, without affecting how I appeared to be coping. Things that didn't affect the way I lived, even if they did affect my sense of worth. Because, how broken did you have to be, not to be able to go to crowded events, like a sports match, or a concert? Or to be able to deal with the socialising of a large gathering, or a family event, without having to hide in the kitchen, or forever outside, or break down in a toilet?
It was all part of how I masked myself from myself. The internal masking, as I like to call it. If I couldn't cope, then I was broken. If I couldn't stand something, then I was too picky, or sensitive, or I simply needed to learn to ignore it. And somehow I did learn. I learnt how to cope with noise and smell and visual overwhelm. I learnt to not let things bother me. To a point at least. There was always a step too far, when I couldn't, or didn't have the energy any more to maintain it. And this did take energy, a lot of it. Something I've only realising now that I don't have the energy to spare to even try it. Or the ability to, in many respects now that I know what I was trying so desperately to hide from.
Because when the truth is known, it's far harder to deny it. It's far harder to live the life where appearing to cope, is as good as coping. Where blaming yourself, is easier than seeing others faults. Where ignoring the pain, makes the pain go away. It's hard to see the mask as a benefit and always a good thing, rather than the shield and tool it always was.
Thank you for this. I'm just going through the process now. I didn't anticipate it and went in at 45 suggesting there might be something other than depression going on. In my psych interview they told me I was not only unquestionably ND (ADHD) but felt strongly I was autistic. Didn't even really occur to me, although I'd done a number of self tests before where I was always in upper range. But I just figured it was how I'm built and there was crossover. But the subsequent tests all obviously pointed to it, but I still didn't really see it. So I've now been referred to the specialist and I don't really know what to expect or how I feel about it. I know I exhibit many of the traits, but it's been 'me' for so long it feels weird to reframe it. But it was also quite overwhelming because I've always just assumed I'm fundamentally broken and have (sort of) learned to live with that. So it's fascinating to me to hear other people's experiences. I don't really know what to expect from my ongoing journey, but it's interesting to know I might find a potential answer and maybe a different path. I wish you all the very best and hope you're thriving.
@TheBreadmonkey@actuallyautistic
Discovering something like this about yourself is not easy, it's not even painless. It tends to make us look back and reframe our entire lives. Often that can feel like grieving all the "what might have been's", or it makes us angry, even bitter at times, when we see how avoidable so much was. If only we had known, or others had even tried to "see" us as we were.
But, this also gives us access to so much more. To a community and its knowledge and experience. We are no long alone. We can truly begin to understand what being us, is and not only how to express that, but nurture it. We can learn how to shield ourselves and take care of ourselves and to live so much better.
@Claydisarray@actuallyautistic I have an almost feral reaction to shoe salesmen trying to put shoes on my feet. I hate it, I HATE it, I will kick you in the snoot, get your hands away.
My mom had to explain at length that it was a form of pampering.
I think the waiter offering pepper falls under the same umbrella. I feel like it's a huge boundary violation, they're just trying to do their jobs.
