spooksforsammy - Tumblr blog

[spooksforsammy]

Anyone have recommendations for text to speech? Dont want spend money yet but want good app so can actually test it out. See so many but don’t just wanna pick one and not like it and then completely give up with text to speech

[spooksforsammy]

Special interest are amazing. But they still disable many autistics.

I love my special interest. My love for Pokémon and bats and paw patrol is amazing. But they still disable me. I can’t social with many because these constantly on mind. When willingly talking self will only talks about special interest. And when conversation change from interests, will get upset and switch it back. And many conversations with me is switching between my interests and what the other person wants to talk about.

When not actively engaging in interests, feel empty and not sure who am, although always feel that way, the feeling get when not have interest around is completely different. When not interested in my special interests am so much more deregulated and irritated and struggle communicate much more.

I still love my interests, but it feels like all really have. They disconnect me from others, they make me feel lonely and trapped while also helping me feel something. My interests are disabling, and are for many. Yes they good and fun and happy but everything has a bad side and that includes special interests

[spooksforsammy]

Omfg sister had stop take medicine. And my lymph nodes on my neck are swollen. There’s 3 of them like that, and they somewhat down but they still painful. Idk what do never had allergic reaction before.

Tried heat compression like heard and it did nothing, it’s owie. Was told my tonsils would start fucking up, I pray that not true in enough pain

[spooksforsammy]

I feel too pressured to become better in regards to autism, but i want to stay with high structure and not given the choice most of the times.

I like to stay with help, is what i mean really.

Hope able eventually get that, especially if would help you live better. Because want everyone be able live way need and is safe and unstressful. But can’t say relate

Because of skills, can’t make many and “big” decisions myself. And wish could. Want more independence in life. Want go out by self not need help talk eat use bathroom. Don’t want be told how do everything or what being done. Want be given chance pick for self. And jealous of those who can pick for self. Even if stressful deal with, have more opportunity then self who don’t get pick. And still hope able find skills where can pick self easily or find people no problem picking for you, but can’t relate on that want.

I relay on others keep me safe. Make sure eat without make big mess. Make sure don’t pee self. Make sure change clothes walk without getting hurt communicating basic needs and problems. I’m told what do it’s picked for me I want to have the ability to pick for once.

If child think should talk to parents. If you know have supportive parents or ones that understand struggle, have a talk with them. Say need/ want help deciding, explain why want that help explain will benefit you in long end. If adult try look into helping services. Don’t know what services can help decide for you when live alone but look into residential homes or group homes (think is right name sorry/ correct if wrong. Maybe different for other countries am talking about US). See if decision picking apps help. Try around experiment find something truly works for you.

Hope everything works out!

[spooksforsammy]

Got phone set up. Only thing missing is phone number but not really worried yet. Went through so much stress get everything worked out just happy.

And got genshin back! Can play again so excited

[spooksforsammy]

Can finally say.

Found had low iron, not low enough be anemic but was getting there. Started iron supplements today

Neck lymph nodes feel swollen. Not looking noticeable difference but noticeable feeling difference. Not sure if allergic reaction or not. Told sister but not sure and think she thinks overacts often. Didn’t want tell but boyfriend made me in case really is reaction. Trying wait until tomorrow find out for sure.

But neck so painful :( it really does hurt. And if caused by medication not sure how expected get iron levels up to normal since was meant take these for 3 months make sure low white blood cells count was caused by the low iron. Ohhh :(

Went doctor today. Want share that.

Still cry with shots :( all did this time is finger prick but so painful. Sister had sit on me and hold hand out because refused do self. Got smiley face bandage :)

Didn’t bring up how often sick but brought up how randomly light headed. And my white blood count low. Not low low. But normal is 12 and am at 10. Had get blood work done :(

Start crying and saying ow and no way before needle near arm. They retest for anemia and want make sure nothing more serious and find solution/ reason.

Will add more later. Too tired

[spooksforsammy]

New phone!

Is so nice and miss being able use. But not have phone made realize just how much need. Changes how deal with daily life and realize autism traits easier deal with.

Want make post talk about why some of us genuinely need devices to get through day. So Is one post idea will do

[spooksforsammy]

Hey hi it is I, -📖

I have a question,

A while ago, i sent you an ask talking about two dragons, zorgelleck and asherah. I forgot to mark it with the lil' book. Did you read it, and if so, did you enjoy it?

(seriously, this has been eating away at my nerves for ages now.)

-📖

I’m sorry!

Did read the ask and plan on responding, but still broken phone so hard use tumblr.

Do enjoy the idea and the story. And still reread the ask so can make sure fully understand. That also reason why haven’t respond to ask yet, want make sure remember everything and have questions.

Sorry to stress out, have many more asks recently and many hate and been avoiding asks in way. Promise will respond, can add on to story before respond!

[spooksforsammy]

Was meant to come today. But for whatever reason never heard a knock on door. Package needed signature and would have signed. But still, never heard them come

Yet have note saying did come to deliver. Now have wait until tomorrow :(

New phone 👍🏾

[spooksforsammy]

Something noticed is many not opened to questions. Because see question and want automatically believe is someone being rude/ disrespectful/not listening. But that’s not always the case. Can respect something and still not understand and want to ask questions.

Some learn by questions, but when can’t ask questions, how expect them to learn? Sometimes just listening to what others have to say isn’t enough. Some people need to have the ability to ask questions to actually understand, yet when they try and get hate for it, they can’t actually learn nothing. And for some, not being able to learn and understand also means not being able to accept.

I’ve noticed this problem more in autistics n those with language processing disorders. And I’ve talked to some who agree. Yes hearing those questions can be annoying, but their helpful. If it’s a commonly asked question, can redirect them to the answer. Or suggest someone who yk is willing to answer those questions. Even if blocking or being rude seems easier, it’s not the actual answer. It helps no one.

[spooksforsammy]

When phone better going to start posting more here. And Instagram. Because have so much say. And want spread more awareness on Instagram. But simply can’t with current phone.

New one meant come today by 7 in afternoon. But ups horrible and they always so late. Really hope comes today. This phone isn’t going be able work much longer and still need transfer data to new one before completely stop working

[spooksforsammy]

I know I am a bit late in wishing you this, but happy birthday!

Thank you!!

[spooksforsammy]

Went doctor today. Want share that.

Still cry with shots :( all did this time is finger prick but so painful. Sister had sit on me and hold hand out because refused do self. Got smiley face bandage :)

Didn’t bring up how often sick but brought up how randomly light headed. And my white blood count low. Not low low. But normal is 12 and am at 10. Had get blood work done :(

Start crying and saying ow and no way before needle near arm. They retest for anemia and want make sure nothing more serious and find solution/ reason.

Will add more later. Too tired

[spooksforsammy]

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%).

[spooksforsammy]

No new phone. Have wait 3-5 days. But no idea if that means regular days or business ones. Can get on phone but is very hard. This be interesting

New phone 👍🏾

[spooksforsammy]

New phone 👍🏾

[spooksforsammy]

And broke phone. Fucking hate today.

Goes in and out so can barely use. Shit sad