Diary of an Autist

[autisticwordvomit-blog]

Autistic Erasure, Mental Illness, and Dissociation (Part 2)

TW: Grief, Autistic Erasure, Death, Self-Harm

Here are some of the things I can’t stop fixating on in the days since:

RG believed that he was undeserving of love. He had internalised all of that difference, all of the rejection and shame and bullying, and turned on himself, just like I did. I’ve been collating all of the diaries and reports and poems he wrote and sent to friends chronologically for his closest friends, as he was such an incredible writer, with tales full of detail and wit. RG always maintained that he had no problem with anyone seeing all of him, as long as it was presented in ‘the right order’ and he would have loved that we cherished his words. He was self-aware in ways I didn’t even realise, but his words lay bare all his deepest self-loathing.

“There is something inside me that is extremely beautiful and fragile, I am lucky enough to have this self reflection... I am emotionally sensitive to the point where it's more severe than anyone I have ever met. Too curious about what's in the dark. I hurt myself just to know. But it's not only internal pain, society punished me quite a few times for being myself and being open.”

That is a direct quote from something he wrote. I hurt knowing that he died feeling responsible for the small-mindedness of others. I cry thinking he never got to fully come to peace with himself, never learnt to accept and love himself. I hate that he felt the aloneness that I have felt as I know how much it hurts.

I disassociate frequently to cope with emotional pain. In the last week I have gone from sobbing loudly to quiet and numb within 10 minutes. In those moments of dissociation I hear the words people say but things that would usually make me sad have no impact on me. Nothing matters and I struggle to mesh with reality, forcing myself to chew and swallow and talk to others. Everything I do is conscious and carefully deliberated. I am a robot awaiting instructions. I am viewing my life through a pane of glass, separated from everyone else.

Dissociation for me is different from an autistic shutdown in that during shutdown I usually lock myself into one position and become catatonic. I am unable to speak or move and often stare at one position. People speak to me through a fog but I am unable to respond, and that can make me anxious as I know it isn’t something that is supposed to happen. During dissociation, I just feel eerie calm. I am a blank slate with no feelings. I can still talk and perform activities, but each task is carefully considered and controlled. Sometimes I feel out of body; sometimes the world grows and shrinks and blurs. In both I tend to lose track of time. 

I used to self-harm to induce dissociation. Having this many dissociative episodes in a short span of time felt oddly familiar to me. Realising that dissociation is a coping mechanism for me led me to realise that this was the feeling I sought when I self-harmed regularly. I often hurt myself when I felt close to bursting point (in hindsight, this was clearly meltdowns) and I would go into the closest bathroom, self-harm, and then sit there feeling like I was not myself. Dissociation was the welcome reprieve from the onslaught of emotion; sound; hurt that I experienced. 

My partner queried if I had just gotten better at dissociation since I have only self-harmed 3 to 4 times in the last 4 or so years, as compared to the sometimes multiple-times-daily habit. I realise that when I feel emotional pain within myself, I can dissociate fairly easily. However, when faced with external over-stimulation, pain seems to be the only way I can induce an episode. It’s like I need it to cut through all of the other stimulation. I know my self-harm was my way of self-medicating. To make a crap situation more bearable. I see now I was probably staving off meltdowns when I couldn’t control the external variables. This happened a lot in school. Being an adult now, I control the places I go to, the people I see, the things I eat etc and hence am put into situations where I have to self-harm to cope much less often. Autism has allowed me the self-awareness to know what adds to overstimulation and I avoid those things as much as possible.

RG used depressants / opioids to dull the overstimulation. RG had always used drugs, but mostly stuck to perception-altering (LSD, MDMA) or energy-boosting (Meth) variants. He told my partner many years ago that he had tried Heroin and didn’t see the appeal. He said it made him sluggish. In the last couple of months of his life, RG was taking quite a bit of Heroin and Oxy. He had Alexithymia, and although he was quite self-aware of his reactions to events and ideas, he struggled with identifying feelings beyond broad categories like ‘happiness’ or ‘sadness’ or ‘excitement’. He felt very keenly but could not pin down specifics about how he felt or why it was he felt what he did. 

RG also struggled with recognising his own bodily and sensory needs. I believe he was under stimulated in many ways, often seeking out adrenaline-rush activities like surfing or skating. He loved doing things that made him ‘feel alive’. He couldn’t, however, recognise the things that made him physically uncomfortable. Once he messaged me after being unable to sleep for two days. After asking some questions, I asked him to open the window, take a shower, and change the sheets. He did the former two and promptly fell into the sleep that had eluded him. I know some other autistics fairly well that have similar striking insights into themselves, but cannot self-report to an ‘average’ standard in other areas. I do know my own executive functioning has been aided greatly by a decade of therapy, reading, and research into general psychology / cognitive processes.

RG was sleep-deprived in the last two weeks. He used drugs to stimulate (for work), then sedate himself (after work), calculating the input much like he would a machine. I believe he miscalculated due to lack of sleep and being affected by the effects of what was in his system. 

I cannot stop obsessing over the factors I knew played a large part in his death. His friends and family keep posting on his facebook wall, speaking as though his death was some sort of unavoidable tragedy, but I don’t believe that it is. I believe if he had been taught to self-regulate and accept and love himself, he wouldn’t have partaken in such risky behaviour. I believe if he had a habit of freely speaking to someone (peers or a professional) without facing judgement or rejection, he would still be alive because someone would have sounded the alarm bells. 

I felt like I was starting to get him there; starting to make him consider these things in the last couple of months and I can’t stop being filled with regret I didn’t push a little faster, a little harder. I know it is not my fault but a world not built for autistics failed him. I can’t stop thinking about results of Autistica’s reasearch into the public crisis that is early deaths in autism, and wondering if it is just inevitable that he was lost. 

I feel hopeless and lost. And I’m not sure what to do about it. 

[butterflyinthewell]

How many times do autistic people have to remind allistics that there is no “higher” or “lower” end of the spectrum?!

Everyone’s ideas of what functioning labels mean is different so the terms high/low functioning or mild/moderate/severe are absolutely USELESS.

Functioning labels are harmful because all they do is invoke pity or sweep someone’s issues under the rug. They’re not real. Autistic is autistic is autistic.

Most people don’t expect someone they deem “mild” or “high functioning” to start punching themselves, have meltdowns or go nonverbal. We’re supposed to ‘know better’ since we’re ‘almost normal’. 

Likewise, anyone considered “low functioning” or “moderate/severe” gets treated as a subhuman who is unable to communicate or understand anything. We’re talked over as if we ‘don’t know better’ because people assume we have the minds of babies.

Functioning labels are HARMFUL. I am autistic, listen to me. Stop with the functioning labels!

[autisticwordvomit-blog]

Autistic Erasure, Mental Illness, and Dissociation (Part 1)

TW: Grief, Autistic Erasure, Death, Self-Harm

I went to RG’s funeral yesterday. He was the other autistic I spoke about in my last personal post (see #autisticwordvomitoc for all of them).

For the last two weeks, since I learnt about his hospitalisation and subsequent passing, I’ve been alternating between tremendous grief, anger, and periods of dissociation (both depersonalisation as well as derealisation) where every time my brain tried to go into the sad zone it was locked out. 

After I wrote the last post, I wrote a sanitised version of my feelings as a tribute to him on facebook. I spoke about missing him and the colour and fun he brought to my life. I omitted out the grief and darkness in the post I wrote here as I knew most people in his life did not understand / want to hear something like that when dealing with death. I however, did mention that to me he was the encapsulation of autistic joy. That he was filled with glee whenever he found something new, or saw the beauty in something. In those moments I felt the pure bliss of his warmth radiating off him and felt grateful that I got to experience it. 

I was on my way with his close friends to a birthday party we were throwing for him, as he died two days short of his 26th birthday. His mother messaged me, telling me my words were ‘offensive’ and ‘insulting’, questioned my ‘self-professed diagnosis’ of RG’s autism, and asked me to remove my post.

(In fact, he had first brought it up when telling my partner about his mother tearfully telling him that he was diagnosed with autism when he was a child - yes, this same woman - upon first moving out from home. When my partner asked him if he thought he was autistic, he replied with, “Of course I am! I’ve googled it.” We had since had many conversations bonding over our shared experiences and neurodiverse viewpoints.)

Those words seemed to trigger cataclysmic emotional fireworks in me. I became hysterically wrecked with tears; vibrating profusely in the passenger seat of the car. I managed to type back that I was autistic and did not see it as an insult. I then handed the phone to my partner (he ‘wrangles’ the allistics that I struggle with when I cannot, and I trust him to speak for me in a way that allistics tend to respond much better to).

I don’t remember everything that happened after that. I remember sitting on the kerb, next to the car. I remember sobbing to a friend, trying to explain why I couldn’t go to this event I helped plan, in the back of an uber home as my partner sat up front. (We’re both socially anxious and it feels rude to sit at the back when no one is in the passenger seat.)

I deleted large chunks of my post. RG’s mother messaged later to apologise, saying she had imbibed too much alcohol. She tried to call me and I let the call ring out. I logged out from facebook for a few days, unable to look at the post I had to edit, but was too sentimental to delete. I sat outside under the stars with my partner in the cold and discussed the probability of being allowed to his funeral. I watched him sink into a nihilistic despair.

I felt powerless. My parents asked why we were back early but I said nothing as I knew they would only defend RG’s mother, just like all the other times I have been hurt by the words or actions of others. I stood under the shower head and felt the words I had carved into my arm at 17 with a razor blade resonate so deeply inside of me: Empty and Alone. The walls tilted and I was small and then large and I did not speak but let sleep hold me for as long as it would. 

The next day, RG’s mother invited us to her house. She has since apologised profusely and repeatedly hugged me tightly. I know she is sorry. I know she was grieving. I have forgiven her, because I know she was struggling to cope with the loss of her child and misplaced her anger. I listened to her long ramblings about how she didn’t like labels and how RG was just ‘special’ with a blank face as she held me close to her. I was just relieved I didn’t ostracise my partner (and I) from the chance to be at his service.

This wasn’t the first time something like that has happened to me, nor will it be the last. Each time the pain feels fresh and new, yet throbs with the tender ache of wounds not yet healed. I can never forget the way rejection feels, and neither could RG. I’m not sure any autistic person does. 

(Post will be continued in Part 2)

[heartofcuriosity-deactivated201]

Society demands that we keep overcoming, overcoming, overcoming. But we don’t have to. Nowhere is it written that to be a really real human you have to brute force your way through your limits. Nowhere is it written that not doing so makes you less worthy. For most people, constantly refusing to acknowledge that you have limits is seen as a problem. We all have limits & we are supposed to acknowledge them, know where they are, work within them. But when you have a disability, it’s like everyone expects you to push past your limits all the time. They want to be inspired, or they want to not have to deal with the fact that a disability means “there are things I cannot and will never be able to do”, even as they expect me to know there are things I can do that they will never be able to. So we are pushed to keep ‘overcoming’, and if we can’t we are failures and lazy. But if we can, we aren’t really disabled. It’s a no win either way.

Neurodivergent K, ‘Overcoming’ Is Not a Moral Obligation (via heartofcuriosity)

[catautistic-deactivated20160811]

non-autistic authors write autistic characters all the time. they just don’t realize it. they’d rather not admit it most of the time, either.

the thing is, non-autistic people have met autistic people more than enough times. however, due to their stereotypes about autism, they often can’t identify it as autism. they see something is up, but they can’t put their finger on just what is up.

so they see people like us and they know the ‘archetype’ which is autistic people. they write us all the time: airheaded professors, awkward nerds, pent up geniuses, etc.

when autistic people point out how strikingly obvious it is that this character is autistic, they usually deny it, or at best, they say the character is ‘if anything, extremely high functioning’, which is more of a kick in the gut than a confirmation. we hardly get those, either.

so, here’s the thing: there are some characters that are very obviously autistic to actual autistic people. pearl from steven universe and papyrus from undertale are two of the most agreed upon examples that i’ve seen. nearly ever autistic fan of steven universe i met says, “yeah, she’s autistic”, and the same goes for papyrus. 

when we, as a community, bring this up, however, we are shot down. “oh, he’s not autistic.” i once was told that - ironic as it was - my headcanoning papyrus as autistic offended autistic people or hurt autistic people. but i’m autistic and they weren’t. 

two autistic people were both agreeing - damn, this character is blatantly autistic - but non-autistic people felt the need to but in and say how horrible it was to “project” onto characters with such a horrible thing.

listen, if you aren’t autistic and you’re reading this -

if an autistic person says a character is autistic, can you just shut up about it?

because if you’ve watched any amount of tv, read any amount of books, whatever - if you’ve consumed stories, there are tons of autistic characters in them.

just because neither you nor the media’s creators knows shit about autism doesn’t mean that the character can’t be autistic.

either way, it’s none of your business.

we have little to none confirmed representation that isn’t terrible and inconsiderately offensively written. 

find something better to do with your time.

[autisticarchive-deactivated2019]

I’ve started working on an “Autism 101″ post outlining what autism is + common autistic traits. 

[that-borderline-autistic]

Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.

Paul Collins (via muteaspie)

[autisticwordvomit-blog]

TW: Death

I lost someone I cared about very much yesterday. 

I don’t know where else to write this. I am autistic and so was he. I was only diagnosed in the last couple of years; given a name to the hollow feeling of other I have felt my whole life. 

He had known for quite some time, but never really pursued information about autism like I had. What he did instead was try desperately to connect to everyone he met. He wanted to be everyone’s friend. 

Five days ago I saw my psychiatrist for our last session. She had become ill and was retiring for treatment. She first treated me ten years ago, when I was a sixteen year old who was convinced the emptiness I felt was my own doing. I believed I was defective; made wrong. She was the one who first brought up the A word two years ago, at the beginning of my journey to self acceptance.

Five days ago she asked if I thought it was right for her to bring up the autism diagnosis. I replied, “Yes, because now I know it’s not me. There’s nothing wrong with me. It’s the world that can’t handle my differences.” Immediately after I had said it I realised that I never thought I would feel this way about myself. That it’s not my fault. I had internalised rejections and corrections and the feeling of aloneness for so long I never thought I could be free of it. 

Reading about the experiences of other autistic people made me feel like I wasn’t alone. That I wasn’t other. I wasn’t an alien and there was a place where I fit, with everyone else on the spectrum. I existed on the spectrum and I felt flushed with exuberance that there was a place for me at all. 

I reached out to the other autistic people in my life. I wanted them to know what it felt like to finally be okay with myself. I wanted them to know peace. He was one of those people. 

I know many people saw him as a happy person. He was genuinely gleeful at times, filled with autistic joy when he got to frolic in nature or connect with someone. I also know not everyone got a phone call of him sobbing after facing rejection. Not everyone understood the self destruction buried inside, ready to turn against ourselves just like we were taught how to.

The last time I saw him, I told him how even though he was hurting, he displayed the capacity to love and protect and nurture the way he was always told he couldn’t. I told him that if he could still surprise himself, there was the potential for so many possibilities. He looked at me silently like he was trying to judge if I was trying to play a joke on him. He was quiet for a while after. 

I showed him an article I had contributed to where I discussed our autistic solidarity and sense of kinship. His eyes were shiny as he read it. 

I know I made an impression on his sense of self that day. I wonder if it brought him comfort or distress when I took in the tubes in his mouth and his rolled-back eyes four days ago. I wonder what he thought about my open declaration of acceptance and gratitude as I pieced together his last few self-destructive days with his other friends. 

I wonder if I contributed to the conflicted view of himself as he spiralled. I wonder if he knew I had circled the same drain many times before. I wonder if he knew that he was not other; not alone.

I feel like I have lost a piece of myself that I will never get back. I’ve learnt that no matter how many times I have grieved, the process never gets easier. I know that I have never been adept at goodbyes. I still don’t know how to accept endings, because it was conditioned into me that I couldn’t create new beginnings by myself. Still I am learning to fight that. 

So here is my first step: Goodbye, Gremlin. I will miss you greatly. I hope that even if it was just a minuscule bit, I was able to make you feel less alone. I knew who you were and you weren’t wrong to me. I wish you had the chance to see how many people loved you and how many people cared so deeply. I wish I had the opportunity to see you learn to love and value yourself. Thank you for all the great memories that make me laugh in the middle of hysterical sobbing. You rooted yourself deeply in my heart and I will never forget the love and joy you brought to my life. I hope you’re frolicking somewhere beautiful.

[neurodiversityclassroom-blog]

“I hate this idea that it “takes a special person to work with special people” It’s a self fulfilling prophesy And it’s a deadly one Because the unspoken idea here is that people with disabilities don’t deserve interaction, patience or decency from “normal people” When you say “I could never do that,” I don’t hear the intended compliment All I hear is typical people are dangerous to those who fall outside the norm And this is so perfectly ordinary that it can be delivered disguised as a compliment”

Full essay here: http://ink-and-daggers.tumblr.com/post/125671834284/small-talk

[autisticadvocacy]

A photo project from an autistic person, documenting the vast range of faces and traits on the...

Photo project aims to capture the many different faces of autistic people

[alliluyevas]

my whole life I have been hearing the same bullshit about how autistic people are intractable and inflexible and don’t understand other people or adapt to new situations

me and every other single autistic person I know have been spending our whole lives desperately trying to navigate and understand neurotypical social norms and adapt to a world that doesn’t want us

meanwhile neurotypical people have to deal with some totally minor social anomaly like avoidance of eye contact or someone responding “not great” to “how are you?” and completely flip out, shut down

they consistently make zero effort to adapt to or understand autistic social patterns and we’re the only inflexible ones? okay

[theconcealedweapon]

“But you’re high functioning. A cure is for the low functioning autistic people who can’t communicate and would benefit from a cure.”

Really? If they can’t communicate with you, how the hell do you know they want a cure?

[blunder]

sleep is so good that I still can not believe it’s free.

[scyphozoic]

sleep is actually highly commodified between sleeping pills, mattresses and pillows (both of which are cultural and not natural forms of bedding), the plethora of ways we manufacture disordered sleep in capitalism and then sell people remedies for them, the fact that good sleep requires shelter and safety, which can be bought at a price…like you only need to be homeless and see the plethora of defensive architecture (spikes, benches that are impossible to lie on, etc.) and the constant harassment by cops telling you to “move on” to know that you need to own things, and purchase things, in order to be allowed to sleep.

[realsocialskills]

Inclusive education: presence, participation, and learning

There are three components of inclusive education that matter a lot, which tend to get conflated:

Being present and welcome

Access to participation

Access to content

Being present and welcome means:

A person with a disability is in the room

Their right to be there is not questioned

People want them to be there

They’re seen as a student and treated as a peer by other students

They’re treated more or less respectfully

This doesn’t necessarily mean that they’re being taught the material, or that they’re meaningfully participating in educational activities

For instance:

A child with a disability may go to kindergarten, and spend a lot of time watching other children do educational activities.

Everyone might be very happy that they’re there.

Other children might like them, and play with them during recess or free play time.

They’re still left out of most activities

They’re still not being taught the same material as everyone else

Access to participation means:

When students are doing an activity, the disabled student isn’t left on the sidelines

They’re given something to do that makes them part of what’s happening

This doesn’t always give them access to the content, in and of itself.

They may or may not actually be learning the material the activity is supposed to teach.

They may or may not really be welcome in the classroom with their peers

For instance:

A group of third graders are being taught a lesson about sorting things into categories

The teacher draws a few giant Venn diagrams on big paper, with topic headings

The teacher writes a list of words on the board.

Students are told to draw those words, then tape them to the place in a Venn diagram category that they think it should go in

Then they’re given a list of words, and told to draw pictures of the words in the place in on the diagram that they think those things go

A disabled student’s aide gives them crayons and tells them to draw a couple of the pictures, then give them to the other kids to categorize

The typically-developing kids take the pictures and decide where to put them

Everyone is more or less happy with this. The student is participating and they are socially included.

But they’re not being taught the material about categorizing things. They’re just drawing pictures.

Access to content means:

The disabled student is taught the same material as other students

They’re given a way to engage with the material that they can understand

They learn the material, and develop their own thoughts on it

This doesn’t necessarily mean that they’re given a way to participate meaningfully in educational activities with peers

It also doesn’t necessarily mean that they are present or welcome

For instance:

A disabled student may attend a mainstream class, but be pulled out for one-to-one tutoring for most of their actual academic instruction.

If it’s good instruction, they’re getting access to the content.

But they’re not participating in educational activities with their peers.

They also may not really be welcomed in their mainstream class; people including the teacher may believe that they don’t have the right to be there (which is a factor that can lead to a lot of pull out instruction in and of itself).

This isn’t just about children, it’s true in every educational setting, including universities, grad school, and continuing education for adults.

Tl;dr Inclusion in school has many components. Three of them are being present and welcome, having a way to participate in educational activities with peers, and having access to the content being taught. All three of these things are important. Solving one problem doesn’t always solve the other two. It’s important to keep paying attention, and to work towards making sure students are welcome, that they are able to participate, and that they are learning the content being taught.

[undiagnosedautismfeels]

ok but why are weighted blankets the best?? I don't have one but I put all my clothes and stuff off of my floor on top of my blanket to sleep in a lil nest and it's weighted perfectly and feels so relaxing and good aa (actual question tho why are weighted things so comfortable and comforting? and is this something NTs experience? if not I feel bad cause this is the best I'm so !! happy aaaa)

I’d love to get a proper weighted blanket but aaah they’re obscenely expensive. And idk why, maybe it’s the full-body sensory input, like all-over stimming. Also, cozy anyway.

[autisticwordvomit-blog]

I recently got one and initially how it feels for me is like when I get out of a pool after swimming. My limbs feel heavy and droopy and it makes me want to sleep. Now I’m used to the weight it feel comforting and secure. Expensive and I had to save up, yes, but I really enjoy mine :)

[theabsenceofnormal]

Autistic Photographer Captures the Perfectly Diverse 'Faces of Autism'

"There isn't a 'right' or 'wrong' way of being autistic."

Link to a write up on this project on themighty.com

Once again, if you are autistic or know of someone on the spectrum who can physically be in Melbourne (AU) who would interested in being part of the project, please contact me! 

I want this project to be as diverse as possible - all ages, races, shapes, sizes, gender identities, orientations etc. I will travel as far as I possibly can if mobility is an issue. Self-dx auties welcome!

[autisticadvocacy]

Belgian professor says government has broken the UN convention on human rights by refusing to allow his stepson to stay because of his health

Belgian professor says NZ broke the UN convention on human rights by refusing to allow his stepson to stay

[autisticwordvomit-blog]