spectrumgarden - Tumblr blog

[spectrumgarden]

anyway i love u "losers" and "boring" people in ur teens and 20s i love you anxious people i love you autists i love you disabled people i love you chronically ill people i love you immunocompromised people i love you people who can't go out and do stereotypical teen/20s activities and i love you people who don't want to. forever!!!

[spectrumgarden]

I've reached 35 responses! They're very interesting, but the sample size is still small, and I don't think it's at all representative of the Tumblr autism community. If I can't reach at least 100 responses, I don't think I'll be able to analyze Tumblr community views on support needs in depth. I'll still post descriptive statistics for the overall sample, but I won't have the statistical power to do anything else.

I'd really appreciate if everyone could help by taking the survey and reblogging this post to their followers!

As a reminder, the survey is meant to understand how people use support needs labels. For example, what makes someone low support needs and not moderate support needs? The survey also helps show what the community is like in general in terms of demographics and experiences!

A summary of the current survey results are under the Read More. Again, especially if a community that you're in is under-represented, please help by spreading the survey link! I'd especially love to hear from more people AMAB, racial/ethnic minorities, people who are not yet diagnosed or were diagnosed as adults, and higher support needs individuals!

Age: Most participants are young; 60% are under age 25%, and 20% are under 18.

Gender: Over half of the sample is AFAB nonbinary, almost 1/3 is trans men, and almost all of the remainder (14%) is cis women. Only 2 people who are AMAB have taken the survey.

Race/Ethnicity: Non-Hispanic White people are very over-represented, making up 82% of the sample.

Diagnosis: 57% are professionally diagnosed, 20% are informally or soft-diagnosed, and 14% are seeking a diagnosis. Only 9% are neither diagnosed nor seeking a diagnosis.

The most common diagnoses are ASD with no level (33%), level 1 ASD (25%), and "mild autism" (13%).

16% were diagnosed before age 8, 24% between ages 9 and 15, 32% between ages 16 and 18, 12% between ages 19 and 25, and 16% over age 25.

Autism Support Needs: The most common self-identified support needs label is "low-moderate" (43%), followed by low (23%) and moderate (14%). Most would benefit from but do not need weekly support (31%), only need accommodations and mental health support (17%), or rarely need any support (6%).

Autism Symptoms: On a severity scale of 0 (not applicable) to 3 (severe), the average is 1.7 overall, 1.8 socially, and 1.7 for restricted-repetitive behaviors. The most severe symptom is sensory issues (2.1), and the least severe are nonverbal communication and stimming (both 1.5).

83% are fully verbal, and 97% have no intellectual disability.

38% can mask well enough to seem "off" but not necessarily autistic. 21% can't mask well or for long.

Most experience shutdowns (94%), difficulties with interoception (80%), meltdowns (71%), alexithymia (71%), echolalia (69%), and autistic mutism (66%). Very few experience psychosis (14%) or catatonia (11%).

Self-Diagnosis: 20% think it's always fine to self-diagnose autism, 29% think it's almost always fine, 31% think it's only okay if an assessment is inaccessible, 71% think it needs to be done carefully, and 11% think it's okay to suspect but not self-diagnose.

15% think it's always fine to self-diagnose autism DSM-5 levels (including if the person has been told they don't have autism), 15% think it's fine as long as autism hasn't been ruled out, 21% think it's almost always fine, 18% think it's only okay if an assessment is inaccessible, 36% think it needs to be done carefully, and 36% think it's okay to suspect but not self-diagnose.

26% think it's always fine to self-diagnose autism support needs labels (including if the person has been told they don't have autism), 29% think it's fine as long as autism hasn't been ruled out, 37% think it's almost always fine, 29% think it's only okay if an assessment is inaccessible, 43% think it needs to be done carefully, and 6% think it's okay to suspect but not self-diagnose.

Disability: 71% feel disabled by autism, 17% feel disabled by another condition but not autism, and 11% are unsure.

Comorbidities: The most common mental health comorbidities are anxiety (68%), ADHD (62%), and depression (56%).

The least common mental health disorders are schizophrenia spectrum disorders (0%), bipolar disorders (3%), tic disorders (6%), substance use disorders (6%), personality disorder (9%), and OCD (9%).

The most common physical health comorbidities are gastrointestinal issues (29%), connective tissue disorders (29%), autoimmune disorders (24%), neurological disorders or injuries (24%), and hearing/vision loss (24%). All others are below 20%.

Overall Support Needs: When considering comorbidities, the most common self-identified support needs label is moderate (37%), followed by low-moderate (31%) and low (17%).

[spectrumgarden]

Oh by the way I think my mother said I'm starting at the workshop in june or maybe July? I'm mad because when I went there with my therapist months ago they said I could do 3 days a week as full time, but now when they called my mother they said I can only do 5 days a week with reduced hours each day. That's a lot harder for me than 3 days full hours? Especially for physical reasons fatigue prevention.... therapist might also go there with me again to discuss detail and tell them how to best communicate with me and such so maybe can fix it then...

[spectrumgarden]

Sometimes I remember absolutely rancid takes that I've seen and I feel the need to rebuke them, so here we go.

Not all autistic people get along better with other autistic people. Not even *most* autistic people get along better with other autistic people. Autistic people do not inherently make more sense communication-wise, and autistic people are not inherently easier to communicate with.

I'm saying this, and I need you(general autistic side of tumblr you) to really pay attention to this. If someone could throw in some reading comprehension questions that'd be great because I really need people to understand this.

Autistic people are not inherently better at communicating. Not better then allistic folks or neurotypical folks, not better then anyone. "Good communication" is very subjective, but even with the most inclusive definition, it still isn't true for every autistic person. Autism is, in part, a communication disability. An entire section of the diagnostic criteria involves your ability to communicate with others, and it's not just "can't do small talk, speaks their mind, tells the truth, a lil quirky". It includes people with:

No functional communication of any kind, even the most adapted AAC.

Cannot speak ever.

Cannot say what they want to say, says the opposite of what they want(apraxia, either of speech or in general)

Cannot understand others.

Cannot use nonverbal communication such as body language, facial expressions, or gestures.

Cannot understand *any* social cues or signals, cannot understand *any* nonliteral speech.

And many many more things.

I struggle with communicating with *everyone*. Every single person on Earth. I have never met anyone who I can *easily* communicate with, or even anyone who communicating with is slightly less hard. Yes, this includes other autistic people. Autistic people also make their own unspoken social rules and cues, they're just a bit different then neurotypical social rules/cues.

Autistic people are not better communicators just because of autism.

Stop saying that.

Please.

[spectrumgarden]

some of my stim toys 🌈☀️

[spectrumgarden]

Just a little something I've discovered after talking to a few people irl, some autistic some not. That the whole "I can totally relate to this [quite severe problem/ presentation of autism etc] for [in comparison minor, so non comparable reason]" thing that constantly happens to (us as) MSN & HSN, visibly autistic, semi- & nonverbal, etc ... online is like. Seen as absolute bullshit by everyone ive told about it. Everyone is like "well of Course this isnt the time for them to interrupt / talk over / make it about them / etc. It doesnt make sense to do it, it's not the same thing, etc".

It's hard sometimes when you feel like everyone just wants to erase or (mis- ?) appropriate what you go through and work so hard to share for awareness (etc), but this is just some very vocal people who no one but their own circle agrees with that this is okay behavior

[spectrumgarden]

When I talk about visible autism on my blog, I’m usually not talking about those who are clocked as quirky and weird. Although that’s completely valid, I’m not talking about them. I’m talking about those of us who are VISIBLY autistic. Those of us who are clocked as those autistics. Who are clocked immediately as having something wrong with them. Those of us who are named as slurs. Who are yelled at. Who are attacked. Who are glared at, pointed at, stared at, pitied. Those of us who are automatically assumed to be with caregivers. Those of us you see talked about in medical journals and on the news as “inspiration” when we graduate or get invited to prom.

This is us. This is who we’re marked as. This is who we are seen as. We are seen as less than, as animals, as objects, as “inspirations”. When we accomplish something it’s usually not seen as our accomplishments but as the accomplishments of our caregivers and support staff.

I get so mad when someone comes onto my blog, MY blog. Me. A visibly autistic, nonverbal person, and doesn’t even look at my tags or pinned post and says “Omg me too, I’m seen as quirky and awkward, I’m visibly autistic 🥰” and like…go you but I’m not talking about you. I’m not talking about “low masking”. Im talking about LOW masking. No masking or very very low masking. Those of us who are immediately seen as autistic.

And it’s frustrating. It’s frustrating when people come into my blog and say this because, you DON’T get it. You just don’t. You don’t get what my life is like, what my experiences are. What it’s like to be LOW masking or no masking. You don’t get that. And yet you try and squeeze yourself in. And that hurts. It hurts to have people who won’t ever understand this squeeze themselves in. Stop doing this.

[spectrumgarden]

can the level of autism u were diagnosed as be wrong? because I don’t think it matches my support levels and I really don’t like being labeled a level like that it feels kinda dismissive .. do I have to base my support needs based on my level ?

yes, you can be given the wrong level. but no, the levels do not line up with support needs.

the support needs spectrum (low, mid, high) is based on your Activities of Daily Living. low support usually only needs help with iADLs, mid support needs support with a mix of iADLs and bADLs, and high support needs support across the board.

iADLs are things like making your bed, washing the dishes, filling out paperwork, driving, etc

bADLs are things like feeding yourself, getting dressed, fulfilling your hygiene needs, etc

the levels are not based on any of this — they function completely differently from the support rankings. I’ve come to think of the levels as “how obvious is it that this person is autistic?”. it’s communication plus stimming plus how good you are at dealing with change.

level three will mostly line up with high support, but the other two levels… it can depend. you can be low support and level two, or mid support and level one. it really does depend on how other people view you and your autism.

I hope that makes sense! I didn’t fully get it myself until last night, when I had a conversation with @birdofmay and then did some more research based on that. the levels are definitely a weird way to organise people, but that’s how they are.

TLDR; you’re allowed to disagree with the level you’re given, but also keep in mind that the DSM levels are not the same as support requirements

[spectrumgarden]

AAC culture is getting annoyed when people say things like AAC & TTS. Text to speech Is AAC!! it very much is! what they mean is most likely symbol based AAC! important! But not the only thing called AAC! Please stop I'm losing my mind over here

^^

[spectrumgarden]

Havent been posting much recently but uhm today I went to my sisters daughters birthday brunch thing and exclusively used my AAC device (out of necessity lol) and there were like 3 of my sisters friends there that I did not know at all so I was very nervous but they all didnt act like it was weird at all? I have no idea if she told them about it in advance or anything but yeah. Also was body stimming a lottt and no one looked at me weird or anything for that so that was nice too

[spectrumgarden]

When you can’t show what you know, people assume you just don’t know anything.

At least that’s how it works for most autistic kids who can’t speak, or can’t control their bodies as much as they’d like to, or can’t answer things “fast enough,” and so on. Because the people who give the tests really don’t want to entertain the idea that their tests might just be garbage sometimes.

Non-speakers who have gained access to communication later in life all tell a similar story: that they experience a mind-body disconnect that makes it hard for them to control their own bodies. That means that they struggle to perform tasks on command, whether it comes from other people or their own minds, and that their bodies will just do things that the person didn’t even mean to do.

And despite the growing number of people who are able to share these stories, most of the People In ChargeTM are still operating under the assumption that if you can’t answer a question or follow an instruction correctly, it’s because you didn’t understand it.

Which means that kids who can’t show what they know because their bodies won’t cooperate are assumed to just not know anything.

Which means they never get to move to the next level of education.

Which means there are millions of children who languish in educational settings that are not academically challenging enough for them- because the problem they have with their bodies is assumed to be a problem with their mind.

But the inaccessibility of assessments is the problem here. As well as the assumptions people make about those who are thought of as “low functioning.” As well as the fact that the majority of autistic kids who can’t speak are still not given alternative means of communication soon enough, if at all.

We can do better. Presume competence. Treat communication like a basic human NEED and a RIGHT, not an optional privilege to be earned. And believe the people who keep telling us as soon as they can, “It’s our bodies, not our minds!”

NOTE: I’ve been wanting to do something on this for a while, and this particular cartoon came together a couple weeks ago while I was listening to “Ido in Autismland” by Ido Kidar. Please do check it out, along with the work of other non-speakers, to learn more about this experience from the people who actually live it. 

https://www.amazon.com/Ido-Autismland-Climbing-Autisms-Silent/dp/0988324709

https://www.amazon.com/Autistic-Boy-Unruly-Body-Autism/dp/B0B7XF3CVT

https://neuroclastic.com/directory-of-nonspeaker-pages-blogs-media/

[spectrumgarden]

"Too often, autistic people don’t get the support they need. This can lead to crisis and, for many, suicide becomes a real possibility. Research shows that two thirds of autistic people have considered suicide, and one third have planned or attempted to take their own life.

We believe this can – and must – change.

Take our survey to help us understand what support is needed

We want to hear from autistic people, with or without a diagnosis, who have struggled with suicidal thoughts.

We also want to hear from people who have supported or continue to support an autistic person who has experienced suicidal thoughts."

[spectrumgarden]

had random thought that if someone be ableist to us word type talk , that could just point AAC at them and lazer them

[ID: traditional illustration person turn AAC device around and shoot large red lasers at another person. /end ID]

happy AAC month :]

[spectrumgarden]

New friend I made is also autistic and last weekend we hung out and cuddled a lot and he reaaally likes pressure/ weight on him so I obviously made the conscious choice to lay on him as much as possible and the way he got so happy was.... so nice aaaa

[spectrumgarden]

Most people really don't seem to know what this mysterious "residential care" means when it comes to disabilities.

"This person is severely disabled, they have to live in residential care."

Do you know what happens when a severely disabled person with high support needs who isn't aware of dangers and needs constant supervision applies for residential care?

They get turned down or kicked out a couple of days later.

This happens regularly, btw. Kids grow up and parents think "Oh, residential care sounds good", and then suddenly every institution, etc. goes "Sorry, we don't specialise in that, sorry, your child is too aggressive, sorry, your child can't stick to our sleep schedule, sorry, your child is too noise sensitive, sorry, your child HAS to participate in our weekly activities even though their disability makes it impossible for them to do so, sorry..."

People who can live in residential care aren't your "the worst of the worst" example. There is such a thing as "too disabled for residential care" and it's more common than you'd think! ☝🏼

"But what happens when someone is too disabled for residential care and their family can't take care of them? Surely everyone eventually ends up somewhere!"

They get passed around from institution to institution, but everyone eventually goes "Sorry, we can't keep them here", and it won't stop. Until, maybe, one day they're lucky and a fixed team of carers "adopts" them and tries to create some kind of assisted living from scratch.

Nobody talks about it, which is why it's always a big shock for parents who found a really good residential care place for their soon-to-be adult child and their child looks forward to moving out, and suddenly this wonderful residential care company turns their child down because it's too disabled. And then the next one. And the next.

So no, residential care isn't for "those with the most profound disabilities" - people with the most profound disabilities can't be in residential care at all.

[spectrumgarden]

I think the topic of consent is very important, and I think as an intellectually disabled person, it’s even more important to talk about what I was taught, and what my mom did.

My mom, who was a single woman at the time, explicitly taught me about consent. Why? Because she knew that I, as an intellectually disabled person and autistic person, needed to know it. And it needed to be drilled into my head the importance of consent. Not only did she teach me this, but she taught me how to communicate to trusted people if something happened. She knew that if she didn’t, the chances of me not knowing, or not understanding certain aspects of consent and sex in general, would be profoundly higher than my peers.

She noticed, she did the research, she taught and did what she could. And I am forever grateful for that. Intellectually disabled people, who have a higher rate of things happening to them and being abused, NEED to be taught about sex education, consent, and how to communicate if something were to happen. We are at a much higher rate of being sexually abused than our peers. And it is so so important that these things are taught to us so we are aware and able to protect ourselves and know when it’s time to contact a trusted adult.

[spectrumgarden]

Decisions are so overwhelming on the best of days. When I'm overstimulated etc and you ask me to make a decision? Forget it.

And it's not because I'm overthinking, I'm not standing in front of the trash cans at the store like "well this one looks easier to clean, but that one is cheaper, but that one looks better, ..." I'm just standing there like "I dont know???" I don't even make it to the "pros and cons" part. And my mother will tell me to choose but to me that task is so overwhelming. To my brain it feels like very hard computing, like math problems that will take me an hour to figure out For No Apparent Reason. Theres no complex thing to figure out but I just sort of like... dont fucking know what to do ? And the more you ask me to choose the more frustrated I get, because I dont know how to choose! Its all the same isnt it? Sure I feel, things ? About the options, maybe? But I dont know what those things are? And everyone gets frustrated because this should be easy, right? It's a small decision, what's your problem? And I dont know what the problem is! I just know my brain goes "beats me" when I'm asked to decide something.