#late diagnosed autism | Explore Tumblr Posts and Blogs

thatadhdmood · 1 year

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an eloquent take down of the "people are self diagnosing autism to be trendy and for attention" take that morons have been echoing on tiktok

[video description is the reblogs, its very long]

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snakeautistic · 2 months

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I’m really scared that I’m becoming an unlikable person as I unmask. I’m more blunt, I talk more, I advocate for myself more and I’m perceived as argumentative when I’m just trying to offer my thoughts/ explain myself. I make sure not to actively be an asshole, so it’s really more just my tone and the social norms that shouldn’t really matter.

I see people give me looks of annoyance when I speak. The exasperation when I finally work up the courage to actually ask a question.

It’s really freeing to not have to think so hard about my every breath or word in social settings but I still really want people to like me. I guess I need to accept that not everyone will, that’s just how it is, but it makes things hard because then those people will treat you shitty.

And then I wonder… is it just my fault? Maybe I should go back to masking. Maybe it’s not worth it to ‘be myself’ or whatever if it will bring ridicule. Even though there’s that crushing, continuous weight that comes from having to conceal parts of myself, maybe I need to just deal with that so I can get along with others.

But I’m also not sure that I COULD go back now.

#actually autistic #autistic masking #masking autism #masking #unmasking #autism #autistic #neurodivergent #asd #neurodiversity #neurodivergence #late diagnosed autism #autistic experiences #neurodivergent things

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themaskedlady · 10 months

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imaginarylungfish · 8 months

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y'all just ever catch yourself masking alone at home? like hey there brain, no need, babe

#autism #late diagnosed autism #late diagnosis #actually autistic #actually neurodiverse #adult autism #masking

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galacticscrotum · 9 months

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Fellow autistics who mask, I’d like to share my experience with you to see if it’s relatable.

I’ve masked so hard my whole life. I got new headphones 2 days ago and started wearing them in public, as well as bringing my tangle fidget toy and letting myself stim with it and sort of move to the music in my headphones. I’ve gotten some strange looks from people, but because I’m not so stressed out and overwhelmed by all the sounds around me, it’s easier to let it go. Some people did seem to interact with me as though I am a child, which is annoying. But it also feels sort of nice in the way that people return my smiles more and speak kindly to me. It seems like it’s easier for people to regard me as innocent which feels nice because when I’m not “visibly” autistic (headphones and stimming), any social deficits I have appear as a stain on my character. Now that I don’t hide it, people make the connection that me acting weird is because I’m autistic.

It’s weird that people aren’t kind to autistic people who mask. They can feel that we’re not being authentic and they think we’re being fake so we can manipulate people. I don’t like being seen as a child because I have very high intellect and people tend to assume I’m intellectually challenged, but it’s nice that it’s not assumed I have bad intentions when I’m “weird.” I liked that as a child I was presumed innocent at all times, and that I’m treated similarly when I do not mask.

For anyone late-diagnosed and/or self-diagnosed, did you notice a difference in how people treat you when you unmask? Do you get treated more childishly? Are people kinder to you? What’s it like for you to unmask? What’s your experience?

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zebulontheplanet · 1 month

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hi! may i ask what the difference is between late diagnosed autistic people and ones who were diagnosed earlier? i was diagnosed when i was five and im just curious as to what the difference is between the groups since i've seen you talk about late diagnosed people in general

Hey anon! Sorry for the late response. I’ve been taking a small break from asks. Anyways!

All in all, Late diagnosed folks and Early diagnosed folks have things in common, the big one being that they’re both autistic.

Experiences are different, however I want people to realize that even late diagnosed folks have a different experience from other late diagnosed folks. You can be any support needs and be late diagnosed. I know late diagnosed folks who are low, medium, and high support needs. I know early diagnosed folks who are low, medium, and high support needs.

Is it more common for high support needs folks to be diagnosed early? Yes! But that isn’t a universal experience. There are multiple reasons someone might be late diagnosed.

From being someone who lives in a country that doesn’t know much about autism, to neglect, to lack of funds and insurance for a diagnosis, to being not white or able bodied, to so many things!

The experiences of late and early diagnosed folks are different, but being early diagnosed doesn’t automatically mean that someone got the support they needed. Tons of early diagnosed folks are early diagnosed, slapped with the autism diagnosis, and sent on their way without any support towards their families. This could be for multiple reasons, and I won’t get into that now.

The main group that dominates social media is late diagnosed, usually white, very low support needs people. Yes, any autism awareness is good! But sometimes, too much of awareness of one thing makes it so the awareness and understanding of something is overshadowed and overlooked. This is why a lot of higher support needs, early diagnosed folks have been screaming out for their experiences to be more centered. However, that doesn’t mean that low support needs, late diagnosed folk don’t have a place within the community. They absolutely do! A very important place.

In all, the divide within the community is huge, and while divide in the community is ok, it shouldn’t be so big in my opinion. We need to be on each others side, and that’s hard right now due to the huge divide. However, the divide is happening within the house. And that’s a BIG problem. Although, more people have to realize that late diagnosed and early diagnosed folk have a lot more in common than they realize.

I hope this explains some and if you have any specific questions then let me know! Have a lovely day anon!

#zebrambles #autism #actually autism #actually autistic #support needs #early diagnosed autism #late diagnosed autistic #late diagnosed autism #early diagnosed autistic #long post

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littleautiebird · 3 months

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As a late diagnosed autistic,

I miss that feeling of when I first discovered my autism. I won’t forget those days when I finally felt seen, more than ever. And the multiple hours spent deep diving into my new special interest in autism as well. That was an exciting time for me, a time of finally finding myself.

#actually autistic #autism in women #autistic adult #high masking autism #neurodivergent #autism #late diagnosed autism #autistic things #autistic woman

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justabunchofquotesfromallover · 1 month

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"Understanding autistic burnout"

Definition of autistic burnout

Autistic burnout is a syndrome conceptualised as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterised by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.

Characteristics and impact

The research participants describe the experience of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described it as affecting every part of their lives and lasting for long periods of time. Many first experienced autistic burnout during puberty, graduation from secondary education, or at other times of transition and changes in developmental expectations.

Autistic burnout had many negative effects on their lives. Many highlighted difficulties with their health, especially their mental health. They talked about struggling with independent living, loss of self-belief, and being frightened that the loss of skills from the autistic burnout might be permanent. They also talked about a lack of empathy from neurotypical people, who had difficulty understanding or relating to the autistic person’s experiences. Some people related an increase in suicidal ideation and suicidal behaviour.

Reasons why autistic burnout might occur

People described a collection of life stressors.

Masking their autistic traits, for example by suppressing autistic behaviours, pretending to be non-autistic, or working very hard to act in a non-autistic way.

Difficult or unreachable expectations from family, school, work, or society in general.

Stress from living in a world not set up to accommodate autistic people, for example managing the stress of having to be in noisy environments.

Life-changes and transitions that are stressful for anyone, for example transitioning from school to work, experiencing a mental health crisis, or the death of someone close.

They also described barriers to getting support or relief from the stress.

Gaslighting or dismissal when attempting to describe the autistic burnout, for example being told that everyone has these experiences, that they just need to try harder, or that they are making it up.

Poor boundaries or self-advocacy with respect to saying no, taking a break, or asking for help. This may be due to trauma, fear, lack of assistance in learning how, and a history of negative responses from others when they tried.

Inability to take a break from stress that is so pervasive (“How do you take a break from life?”).

Insufficient external resources and supports, for example inadequate disability services, lack of useful social support.

Together, the life stressors contributed to a cumulative load of stress and the barriers to support meant they were unable to get relief from the stress. At some point, the expectations on the person far exceeded anything they were able to do. Every part of them gave up and autistic burnout resulted. Or, as one study participant summarised:

‘‘Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.’’

Reducing or Preventing Autistic Burnout

Participants told us about ways that they found to relieve or prevent their autistic burnout, and advice they have for others.

Acceptance and support – interacting with others who could accept them for who they were, without any need to masking or pretend. This could be one-on-one with family members or friends; on a community level of groups with accepting cultures; or on a peer level, especially finding other autistic people who could validate their experiences and offer information and emotional/social support from lived experience.

Being autistic – attending to autistic needs like stimming and spending time with intense interests and comfort items, unmasking, using autistic strengths or doing things in an autistic way.

Formal supports – receiving reasonable adjustments at school or work, physical support like someone to provide groceries, and mental health support.

Reduced load – taking time off, more breaks, reducing social activity or other types of more stressful activities.

Self-advocacy and health – learning how to set healthy boundaries and expectations from others, and what to do when others aren’t respecting boundaries. Learning how to ask for help in a way others might be responsive to, and leading as healthy a lifestyle as possible (for example participants described how exercising, sleeping, eating well, and doing things that made them happy helped them out of autistic burnout once they had enough energy to do them).

Self-knowledge – learning how to recognise and act on the early signs of autistic burnout (for example by cancelling social plans to have more rest), having an autism diagnosis, and understanding one’s own patterns of behaviour and feelings.

Recommendations and next steps

We recommend increasing awareness about autistic burnout, and connecting with the autistic community and peers that understand autistic burnout. The experiences of people who describe being in a state of autistic burnout should be validated, whether they use the term or not. We recommend that therapists and clinicians learn to recognise autistic burnout in clients and offer strategies for relief.

In general, we recommend others be aware of the potential dangers of teaching autistic people to mask or suppress their autistic traits. Suicide prevention programs may want to consider the potential role of burnout. We strongly support interventions to decrease the discrimination and stigma associated with autism and disability in society, and to improve access to reasonable adjustments and acceptance.

Though an important start to the conversation, our findings are from a small qualitative study of a non-random sample. They are also limited to autism; we feel that this may be a broader experience of people who experience disability. Therefore we highly recommend more research in this new and urgent area, especially in collaboration with autistic people who can contribute the expertise of their lived experience.

--Dr. Dora Raymaker, Research Assistant Professor at Portland State University, based on research by Academic Autism Spectrum Partnership in Research and Education (AASPIRE) (via National Autistic Society)

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sapphirecastles · 2 years

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Deep compensation in Autism spectrum disorder (ASD)

I recently read about a particular thing people on the spectrum do that is rarely spoken about (when comparing to masking) and gets in the way of pople getting a formal asd diagnosis: deep compensation.

Livingst and Shah (2019) and Livingst et. al (2020) have written about it (links go to open access papers) and showed how it can disguise autism.

I'll share some quotes, from those papers, that I found interesting.

However, it is likely other, more sophisticated strategies involving deep compensation exist, such as detail-focused analysis of social information, which might allow a person to solve ToM and have fairly flexible social understanding, albeit via an atypical route.

We have previously hypothesised that these may be distinct from deep compensatory strategies, which work flexibly across contexts, because they provide an alternative route to the social-cognitive ability in question (e.g. theory of mind), for example, using complex mental algorithms to predict other people’s thoughts and feelings.

This would be akin to a visually impaired person using echolocation; the strategy does not simply circumvent the impairment like a white stick does, but provides an alternative way to form a spatial representation that enables navigation skills.

Strategies that enable an alternative route to solve the cognitive difficulty in question (e.g. successfully solve theory of mind, albeit differently to neurotypical people): Flexibly use built catalogue of possible interpretations of others’ mental states, based on a combination of multiple sources of information (e.g. logic, context, facial expression, tone of voice); substitute others’ values/interests with your own or those of a TV/book character to infer their mental state

When it comes to how asd are presented esp in afab individuals, camouflaging or masking is something that is often present. (You can test here if you score high or low on these, link goes to the CAT-Q test), in a nutshell the following table describes what each behaviour is:

I have already come across most of this online (or in books) when reading about masking, but deep compensation strategies - in which a person can use a different part of the brain to perform a function, often solving intellectually what most people solve by instinct - were a new concept to me and helped me a lot, since it is often co-present with other strategies but was rarely talked about.

(Venn diagrams showing the number of a Diagnosed and b Non-diagnosed participants that reported using masking, shallow compensation, deep compensation and/or accommodation strategies. Overall, participants were more likely to report strategies across multiple types, than a single strategy type. This pattern was broadly similar between the two groups, but there was a significant group difference in shallow compensation)

The biggest take away is that, when this becomes an ingrained habit, people will be able to "understand" social cues and to deduce what people are thinking/feeling (especially when combined with acommodations in the environment) and this can come up as a failure to identify with a few traits people with asd have (but still feel autistic).

Deep compensation (subtheme), involving complex and flexible strategies, contributed to some improvements in social cognition. Some participants reported using pattern detection and internal data modelling (gesture + facial expression + context = particular mental state) to understand others. These strategies, although hard to implement at first, could become “second nature” with time.

To modulate compensatory efforts, many participants described compensating after logically assessing the costs versus benefits (subtheme). For example, compensation was considered worthwhile to make a positive impression towards a friendship, but not for interactions with inconsequential strangers. In superficial interactions, masking was preferred over compensatory strategies to conserve resources.

Compensation typically resulted in a lack of support in adulthood because participants looked “too normal” (subtheme). Employed participants reported that employers and colleagues held them to a neurotypical standard, which resulted in social errors not being interpreted in the context of autism. Because autistic characteristics went undetected by others, many participants reported that it was difficult to request, and they were unlikely to receive, workplace accommodations.

“I think I observe patterns in behaviour and then try to transfer this. So if a person is behaving x/y/z types of ways, they could be feeling or thinking what so and so people had felt. It's almost a case of systematically storing little patterns in each person and the context, so I can refer to it in future.”

There is another quote that I loved but simply cannot find rn. It must be somewhere in the papers or related literature, so I recommend reading it if you are willing. I also found some great charts last night that i can't locate rn.

Personally, I was quite shocked to find out that people take social cues by instinct, because i legit thought everyone deduced what people feel/think and it was second nature to them simply because they had more social interaction and were more at ease around people and therefore social interaction becomes better with time after you learn and become familiar with different behaviours and learn how to react. I thought this was the "normal way" people go through life and some were simply more skilled at it (learning faster and better at deducing). Well, it seems it is not the case. I can't make any good summary of the papers, but I hope the quotes I shared here can help some people as they have helped me.

#asd #actually autistic #masking #accommodation #compensation #deep compensation #theory of mind #autistic adult #late diagnosed autistic #autism #autistic masking #autistic community #camouflage #late diagnosed autism

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fantasy-harvest-rune · 9 months

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Another of the totally paradoxical things about my brain:

People being loud outside my room = too much noise, sensory overload, heightened anxiety

Putting on my noise cancelling headphones, turning the volume up to moderate and listening to heavy metal music with a series of complex (double bass drum heavy) drumming sequences and shouted/ screamed vocals = sensory overload but good, comforting, calms my anxiety

Hmm…yea that makes sense I think

#late diagnosed autism #autism #gemma gets personal

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snakeautistic · 4 months

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I didn’t really do the classic lining up things as okay as a kid, but interestingly looking back I think I might have done something similar? I did a lot of setting up my toys in various different ways in order to create a particular scene- arranging a dollhouse and dolls in just the right poses, sorting my stuffed animals into a “town” based on the different professions I’d chosen for them, creating elaborate dioramas for my plastic animals.

I would at times act out scenarios with my toys after this set up- and every time I played with them I demanded they be set up first, otherwise I wouldn’t play with them- but the majority of my enjoyment came from the arrangement of my toys. I’m just curious if anyone else did this. I also liked to collect new toys to add to my setups too- properly sorted, of course.

#actually autistic #late diagnosed autism #late diagnosis #neurodivergent #autism #autistic traits #autistic experiences #neurodivergent experience #neurodiversity #autistic #asd #autistic things #was it the autism

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themaskedlady · 10 months

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imaginarylungfish · 8 months

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i sometimes like to think of my autism like a superpower and i just have a kyrptonites, like Too Much Noise or Too Much Change or Too Much Social Interaction. Like, sorry. I gotta go recharge this power of mine. So silly

#autism spectrum disorder #autism #adult autism #late diagnosed autism #actually autistic #actually neurodiverse #neurodivergent #actually neurodivergent #autistic #high functioning autistic #high functioning autism

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silenceinternalmonologue · 11 months

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want to learn more asl and/or aac methods bc talking out loud exhausts me so much sometimes like rn i feel like i need to sleep for 3 hours after calling on the phone with friend but also it's not like i ever lose the *ability* to speak even if i become slower, less articulate, more exhausted etc so i don't think i'll ever be able to convince people (including myself) that it's an accommodation i need erghhhh has anyone else dealt with this?

#autism #internalized ableism #actually autistic #speech loss #late diagnosed autism #low support needs

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crazycatsiren · 1 year

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"LET ME BE A DUMB HOE IN PEACE!"

#actually autistic #autistic adults #autistic women #autism #asd #autism awareness #autism support #autism community #late diagnosed autism

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littleautiebird · 2 months

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Autism is like everything that is normal to human existence is just a lot harder for us. Processing takes so much more time, sometimes functioning does too, recovery takes forever, our senses are heightened or can seem lowered. Its like the extreme in all ways possible.

Yet there are many wonderful things about my autism. We pay attention to detail, we see things and people that no one else does. We call out the beauty of our environment, and we can take it slow and restful.

#actually autistic #autism in women #autistic adult #high masking autism #neurodivergent #autism #autistic things #autism awareness #visual storytelling #late diagnosed autism

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