What are your thoughts on self-diagnosis being belittled by many in the autistic community?
For clarity, I’m not asking to start a debate, just a genuine discussion. I currently don’t have the option to get a diagnosis, but feel fairly confident that the research I’ve done over the past year and a half has been legitimate and credible.
I don’t feel comfortable saying that I am definitively autistic, but I am ok with saying I’m “self-suspecting.” #actuallyautistic@actuallyautistic
I’m all in favor of self-diagnosis. I was purely self-diagnosed for a long time, and worked myself into verbal contortions to relate to it.
Now I have a diagnosis. But not really. I never did the full neuropsych eval thing. My autistic-specialized psychologist merely said “yeah. Uh huh. Oh, yeah, you’re autistic!” And that’s plenty good enough for me.
I think I speak for the majority of people here in saying welcome to the #ActuallyAutistic community!
@felyashono@actuallyautistic Well thank you! I am also in favor of self-diagnosis, but some communities out there are unashamedly hostile to it (looking at you, Reddit) and it has made me have self-doubt. But I am glad to know the background of the #actuallyautistic hashtag…and that I’m not alone in feeling the way I feel 🙂.
I had a few friends suggest that I take some of the tests available online. Embrace Autism is a good source if you care to do so. I took the AQ, RAADS-R, CAT-Q, and Aspie Quiz. I scored high for #ActuallyAutistic traits on all of those tests.
please help octo! she needs to pay her monthly bills including rent, debt payments, and college expenses. she's struggling with parental abuse. anything helps!
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout
First academic/clinical article I've ever seen specifically on autistic burnout, and it rings true. It's particularly validating to see initial confirmation that autistic burnout is its own distinct phenomena, which likely requires its own specific interventions.
Periodic reminder that the @actuallyautistic group and #ActuallyAutistic hashtag are intended for discussion BETWEEN AND AMONGST people who are autistic (diagnosed or self-diagnosed) or think they may be.
If you are not autistic, by all means read what is posted, but please respect this as an autistic space and do not post here.
There are plenty of other groups and hashtags under which more general discussion of #Autism can take place and can include professionals, academics, non-autistic parents of autistic children and those with a general interest in the subject.
But the second - often overlooked - issue is this:
My fellow autists - when someone who is clearly not themselves autistic does post to the group, PLEASE, PLEASE do not engage (other than politely to explain the purpose of the group and hashtag). I know it's hard, but ultimately it just subverts, dilutes and prolongs discussions which can rapidly become unhelpful and adversarial.
In the series "so that's an autism thing too": difficulties in cooking. I have hard time coming up with the shopping list outside of the routine things which I always check against a list on my phone. It's especially difficult to plan what particular dishes should be cooked in the following days.
Once I got hang of cooking -- which happened after I had turned 30, almost 35 -- I learned to like cooking when there's no rush and the recipe is clear. I even can improvise, albeit on quite restricted range. However, when my spouse isn't around, I default to microwaving things or eating frozen pizzas.
I have to admit: I was worried about my trip to Italy. My wife was as well.
It's the first time we've travelled away from home in years - since before COVID - and also the first time since I discovered that I'm Autistic.
I was worried about what unmasking has done to my ability to cope with change, disruption to routine and the chaos and unpredictability of travel.
I used everything that I've learned about being Autistic in the last 10 months, and I actually overestimated how stressful and taxing it would be. By doing so, I planned for a lot of downtime. Taking time off work - and not trying to balance work with travel - has also helped tremendously. It has let me focus on travel and rest.
My wife has a chronic illness, which means she needs just as much - if not more - downtime than I do, which helps avoid conflict between our energy levels and motivation. The pace of our travels seems to work well for both of us.
We planned for two full days in Venice. We spent all day yesterday walking and exploring, and today we're mostly staying in our hotel and recharging. We've both become better tuned to our needs, and we both need this downtime before we move on to the last leg of our trip in Rome.
I do expect this coming week to be a bit more challenging, as I'm returning to work while we're still in Italy. But the last couple of weeks has given me more confidence in my ability to recognize, plan and advocate for my needs, and I'm confident that will carry over into this week as well.
Here's another example of masking sensory preferences because they're considered "childish":
One of my comfort foods is PB or Nutella sandwiches. While in Italy, I found a loaf of sliced white bread that has no crust, and I was shocked at the difference in my experience between this and normal bread with crust. It's so much more enjoyable and less stressful to eat a sandwich without crust.
It made me recall, as a kid, forcing myself to eat the crust because I would be mocked and shamed for cutting it off.
Even now, writing this, I feel a little self conscious. Like someone is going to say, c'mon, is the crust really so bad? How can eating crust possibly be stressful? You're being a wimp/making a big deal out of nothing.
In reality, it's a small thing. Yes, I can force myself to eat it. I've been doing that for 30 years. But all of those little small instances of masking add up.
Now that I'm thinking about it, I actually have a very specific way of eating a sandwich to minimize the discomfort of eating the crust.
Well... lesson learned here: find bread without crust back home, or don't feel shamed for cutting off the crust.
Neither was created to "avoid" posts from non-autists, because it's just a slogan calling out people speaking for us without being one of us. The hashtag and group are just trends we've gathered around that are good places to reach our community, either as a member or as someone who's looking to ask actual autistics for input.
Trying to run off @LALegault for asking a genuine and serious question, one in which acknowledges us for who we are (often hyper-interested experts who are chomping at the bit for someone to ask us to info dump about a favorite topic) is more than assinine, it's actively fighting efforts for us to get genuine acceptance in society.
If you want to not be an ass about it just chime in with a "Hey, can you add #AskingAutistics, we're hoping to get more activity on that tag for this purpose instead of this one to separate out these kinds of questions" or "some of us don't want to see questions not directly relating to the autistic experience and that'll help us filter this out"
@dave@gaveen@LALegault@fishidwardrobe that's the fun thing about community... none of us is individually the authority on these things, it's a matter of consensus, not original intent. Even moreso on a public ActivityPub space, if you want a private space there are options for that.
I remember the #ActuallyAutistic tag coming into existence... it wasn't a "space" at all, it was just originally us just speaking out against those who would speak over us. Over time it became a differentiator of referencing us vs the people who would speak over us (ie. #autism in older spaces... <cough>twitter<cough> is flooded with non-autistics speaking on our behalf while #ActuallyAutistic is where you find us).
After a while, it started getting used in group names to differentiate us as being autistic led spaces, but not necessarily autistic private spaces.
please help octo! she needs to pay her monthly bills including rent, debt payments, and college expenses. she's struggling with parental abuse. anything helps!
I am doing a survey about yoga and neurodivergent folk and your boosts would be appreciated.
If you are neurodivergent (self-realized or Dx'd, it's all good here), and fall under the vast ND umbrella, I'd love to hear from you. Quick 6-7 question survey and you can remain anon if you want.
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?
In parallel I do read A Tall History of Sugar [2019] by Curdella Forbes that takes place in rural #Jamaica and starts in the late 1950ies. Seems very promising, being already on page 47! #bookstodon@bookstodon
@bookstodon Very strange reading a book with two main characters that both are so heavily coded as #actuallyautistic, but I don't think this was done on purpose...