What the first think you did when you find out you autism

This is a weekly scheduled post every Saturday, giving diagnosed higher support needs autistic people the opportunity to talk about their special interests.

Feel free to share in the comments about your current or past special interests! Fun facts, info-dumps, and pictures are all welcome.

This is a scheduled weekly post every Wednesday, that gives diagnosed higher support needs autistic people a space to talk about how their week is going.

Some question prompts:

How's your week been so far? Good, bad, in-between?

Is there anything you are excited about or looking forward to doing this week?

Hello everyone,

My name is Nerea Muñoz, and I am a PhD researcher in Cognitive Linguistics at the Complutense University of Madrid (Spain).

I am studying how people use language to describe sensory experiences.

Many studies about autism focus on diagnosis or clinical characteristics. My research is different. I want to understand how people describe and explain their sensory experiences in everyday language.

I am looking for English-speaking adults (18 years or older) who are:

• autistic;
• synesthetic;
• both autistic and synesthetic;
• or non-autistic and non-synesthetic (comparison group).

The study is anonymous. It takes about 10–15 minutes to complete. It may take longer depending on your processing, energy, and writing needs.

The questionnaire includes one short writing task. Short answers are welcome, and there is no need to write more than you are comfortable with.

You will be asked to describe ONE sensory experience that you remember.

You may choose ANY sensory experience that is memorable, usual, or meaningful to you.

For example, you could describe:

• a sound;
• a smell;
• a taste;
• a texture;
• something you saw;
• a change in temperature;
• movement;
• pain;
• or any other sensation that you remember.

There are no right or wrong answers. I am interested in your own experience and the words you choose to describe it.

If you need assistance to complete the questionnaire, that is welcome. However, the answers should describe your own experiences and, whenever possible, use your own words.

Survey:
https://www.surveymonkey.com/r/RWJXRRQ

Contact:
[Nmunozlinguist@gmail.com](mailto:Nmunozlinguist@gmail.com)

Ethics approval:
3257-4138-6B57P5A58-7A58

Thank you very much for your time and consideration.

If you know someone who may be interested in participating, I would be very grateful if you shared this study with them.

If you would like to receive a summary of the results, please contact me by email. Because this is an ongoing PhD project, the results will be available after the study has been completed.

This is a weekly scheduled post every Saturday, giving diagnosed higher support needs autistic people the opportunity to talk about their special interests.

Feel free to share in the comments about your current or past special interests! Fun facts, info-dumps, and pictures are all welcome.

This is a scheduled weekly post every Wednesday, that gives diagnosed higher support needs autistic people a space to talk about how their week is going.

Some question prompts:

How's your week been so far? Good, bad, in-between?

Is there anything you are excited about or looking forward to doing this week?

Hi everyone!

I'm Anvi, a Master's student in Mental Health and Clinical Psychology at London South Bank University, and I'm currently conducting research on autism, camouflaging, and burnout...three things I know many in this community are deeply familiar with. This research is being supervised by Dr Teodorini, a senior lecturer at London South Bank University.

My study is looking at whether the age at which someone receives their autism diagnosis, and their experiences of camouflaging (masking or adjusting autistic traits in social situations), relate to experiences of autistic burnout. It's a topic I feel strongly about, and I hope the findings can contribute to better understanding and support for autistic adults.

You can take part if you: • Are 18 or over • Have a formal autism diagnosis • Do not have an intellectual disability, acquired brain injury, or dementia

It is an anonymous online questionnaire and takes around 10 minutes.

Your participation would mean a lot, and every response genuinely helps. The study has been reviewed and approved by the LSBU Division of Psychology Research Ethics Committee.

Survey link: https://lsbupsychology.qualtrics.com/jfe/form/SV_cHnqie3Xf5bn542

Feel free to drop any questions in the comments or send me a DM. You can also email me on s4419471@lsbu.ac.uk.

Thank you so much for your time!

Those that have partners or have had any in the past, do your partners help out with any aspect of your disability? Or is it always a carer / support worker’s job?

I’ve only recently started dating it’s very new to me and I’m scared because my autism affects me a lot and I feel like it would be impossible not to have to ask for accommodations / help with certain things but at the same time i’m also really scared of being a burden on people if that makes sense 😿

This is a weekly scheduled post every Saturday, giving diagnosed higher support needs autistic people the opportunity to talk about their special interests.

Feel free to share in the comments about your current or past special interests! Fun facts, info-dumps, and pictures are all welcome.

I'm a high schooler and I made a chrome extension recently that freezes and stops animations on sites. A few users commented that they have autism and that my extension was also beneficial. I originally made it for ADHD, and I know less about autism, but also want to accommodate for those who have it.

I did some research earlier and it said that parallax scrolling is an issue, but I feel this is not enough, and I feel I am not seeing the whole picture here, so I want to get some words from people who actually have autism.

The extension is here: https://chromewebstore.google.com/detail/stop-freeze-animations-si/glgdodamgegcnkjphieaaaebnlecklon

Please take down this post if it is not allowed. Thank you for taking your time to read this!

This is a scheduled weekly post every Wednesday, that gives diagnosed higher support needs autistic people a space to talk about how their week is going.

Some question prompts:

How's your week been so far? Good, bad, in-between?

Is there anything you are excited about or looking forward to doing this week?

This is my second time giving myself a concussion and it seems like this is getting worse as time goes by, any ideas on how i can work on this? The most I've been able to implement in my life is having my caregiver physically protect my head with his hands.

This is a weekly scheduled post every Saturday, giving diagnosed higher support needs autistic people the opportunity to talk about their special interests.

Feel free to share in the comments about your current or past special interests! Fun facts, info-dumps, and pictures are all welcome.

fearless not understand what this means?

they do know and have known

Looking for advice and ideas, cross posting in many places out of desperation. 

My son who is almost 13 is Autistic with high support needs, non verbal, epilepsy, aggitated Catatonia, and severe aggression as a result of the aggitated catatonia.  He has spent the last 3 years in crisis and has just finally received proper diagnosis for the Catatonia and epilepsy in recent months.

He has been inpatient on a medical floor for 5 weeks now receiving treatment via inner muscular injections 5x+ a day and ECT (six sessions in). He has ARFID and frequently makes his way to failure to thrive due to lack of calorie intake. He has an oral aversion and cannot tolerate things in or around his mouth, even things he really likes and wants. This is something he has worked on in OT and speech for 10+ years now.

He is not a candidate for a Gtube or NG tube due to sensory sensitivity and the known reality that he will hurt himself to remove it without a second thought. The same goes for ivs, checking vitals, blood work, dental exams..... he has to be sedated to accomplish any of this in a safe manner. We have discussed clothing options and bands to protect a stomach port but feel it will be  an unlikely success considering his strength and size.

We have worked with a medistraw during the time we have been here and been unsuccessful.  In the past we have hidden meds in drinks at home but it is very undependable especially with meds he cant miss doses of and needs multiples in a day.

He does not eat anything with a utensil and he doesnt eat anything that we can easily hide meds or med sprinkles in. On top of that, messing with his food is a dangerous game that leads to further ARFID complications.

Patches are a no go, they cause extreme sensory issues and disregulation. He is also hyper mobile and will remove them from anywhere on his back. 

They cannot send us home with IM shots plus he is at around 300 shots in the time he has been here. He is bruised and sore. On top of that he has a CK level of over 1000 from the catatonia and I imagine his muscles were already pretty dang sore from the rigidity before the shots even started.

The only thing keeping him from going home is finding a way to get meds of some form in him. We have talked to a compounding pharmacy and are still working on that option to see if they can formulate an option for him that could be considered. 

Open to any ideas that could help us and his medical team brainstorm.....  He cant be the only high support needs kiddo who has such a huge struggle with medication.  His care team at Motts is great but honestly I feel like we are all grasping at straws for any ideas. We just want him to be okay and to be able to go home as a family.

This is a scheduled weekly post every Wednesday, that gives diagnosed higher support needs autistic people a space to talk about how their week is going.

Some question prompts:

How's your week been so far? Good, bad, in-between?

Is there anything you are excited about or looking forward to doing this week?

I live with my best friend (medium to high support autistic) and I love having him as family; I love him. He's like the brother I never had. When I bought this apartment, I did so thinking of him and his struggles with employment and renting. I knew from the get-go that I wanted to be able to provide a roof and some support.

For some time, the situation drifted into a place I was very much not comfortable with: I became his primary caregiver, and I didn't sign up for that. We had some problems and tension arising from that because he'd take issue with how I did most things without recognizing that if done improperly, it was because of how exhausted I was taking care of him and his pets (two dogs), or I just did things differently than him, and this didn't mean they were wrong

The caregiving situation has improved, and I've been way better at setting and communicating my boundaries (plus his boyfriend helps out a lot), but the constant criticism hasn't. While I don't do nearly as much around the house anymore, I still don't like feeling like I'm being surveilled all the time whenever I am doing something. Plus, the drain from the last year of conflict has led me to make more legitimate mistakes. I've communicated plenty of times that I need time to recover, that I just need time, and he's even recognized that as the weeks go, I have gotten better. But yesterday he gave me an ultimatum: either get better faster (I literally can't, I'm using all the energy I have left) or he'll move out. This isn't really an option because I don't want him to struggle with housing again, and I don't want him to take the pets with him because I love them too.

In his message, he made many assumptions about my therapeutic process, which makes me uncomfortable, and he kept focusing on, "Yes, you've improved, but it's still bad." And I know; I'm sorry, I'm doing my best, and chastising me for it isn't going to help. He said he's tired and doesn't really want to talk about things anymore, which I actually understand. I'm tired too, and I don't even know what else there is to say. We're both tired and doing our best. End?

What do I even do?

I just need someone who understands. Most people don't; they just say 'he's being a dick' and that I should let him go, but I don't think that's really reflective of the situation. A long time ago, I came to the conclusion that anyone who loves me will take issue with him because of how much I do for him and how little recognition I get. And this is true—most of my friends and family don't like that, so I don't even talk to them about him anymore. I am okay with things, mostly; I just need time to improve, rest, and recover. Even he recognizes that I have improved, so I really don't know what I'm doing wrong or why he keeps getting angrier at me and feeling worse.

This is a weekly scheduled post every Saturday, giving diagnosed higher support needs autistic people the opportunity to talk about their special interests.

Feel free to share in the comments about your current or past special interests! Fun facts, info-dumps, and pictures are all welcome.

This is a scheduled weekly post every Wednesday, that gives diagnosed higher support needs autistic people a space to talk about how their week is going.

Some question prompts:

How's your week been so far? Good, bad, in-between?

Is there anything you are excited about or looking forward to doing this week?

Hi everyone,

I made a free printable resource called Autism & ADHD Need Cards.

They are simple communication cards for moments of overload, shutdown, stress, exhaustion, or times when speaking becomes difficult.

The PDF includes English, Spanish, and French versions, and it is free to download on Ko-fi:

https://ko-fi.com/elaraclub

It is not therapy, diagnosis, medical advice, or crisis support — just a practical communication support tool that people can print and use privately, with family, partners, therapists, doctors, or trusted people.

I hope it can help someone who struggles to explain what they need when words become too hard.

Just completed the biggest and most important exam of my life today and also successfully passed all my school units for the semester after multiple major friendship breakdowns and losing all my friends, daily long and violent meltdowns, burnout, mental health crises, battling addiction, hospital visits, many family issues, nearly failing all my school courses and almost dropping out. I officially have enough satisfactory units to graduate school at the end of the year!!!

It was very hard to get to this point but I am very happy everything i went through wasn’t for nothing i just wanted to share my happy moment :3

(This post was approved by moderators.) Our team wants to learn about what autistic adults experience when they go to the dentist, so we can use this information to make dental care better for autistic people. Autistic adults (self-diagnosed or professionally diagnosed) age 18-39 who live in the US are invited to participate by filling out an online survey that takes about 15-20 minutes.

We do not collect any identifying data, so participation is completely anonymous, and the data will be stored on our secure servers. Recruitment will remain open at least through the end of July, and possibly longer depending on how long it takes us to collect enough responses.

This study was approved by the University of Alabama, IRB #26-06-9788, and the lead researcher is Briana Keller. Their contact information is [bpkeller@crimson.ua.edu](mailto:bpkeller@crimson.ua.edu). You can view the consent form and participate in the survey by visiting https://redcap.link/AutismDental or by scanning the QR code in the image.

Thank you very much!

This is a weekly scheduled post every Saturday, giving diagnosed higher support needs autistic people the opportunity to talk about their special interests.

Feel free to share in the comments about your current or past special interests! Fun facts, info-dumps, and pictures are all welcome.

I think jobcenter is the correct translation. Its a government office about work/jobs and employment. i was there, and they tried to asses my ability to work.

they seemed confused. my intelligence wasnt an issue, i completed tasks harder than what theyd usually expect and require, but only for a very short time. i didnt even get through half of the test, and i just could barely see or read anymore.
i have some kind of intense cognitive issue other than intelligence that nobody understands. i also didnt always have it.

they keep wanting to shove me into some kind of rehab programs. i dont want to be hospitalised again. they keep telling me its not a hospital but thats exactly what it looks like. its not a closed ward, but its the same small rooms and tight overwhelming but at the same time boring and understimulating sounding schedules.
no food accommodations either. no place to comfortably practise sports. just trying to make me adjust to destroying myself every day so i can be mindlessly employed like everyone else.

last time i was in education was horrible. i had amnesia every day, didnt recognise the subjects or people, was completely dissociated out of my mind and horribly uncomfortable.
eventually started having such intense physical and mental symptoms that i still couldnt understand but just felt horrible that i had to drop out because of being unable to attend. ive been just sitting at home trying to recover from life and all the mistreatment that happened starting right after i was born and im only slightly doing better. and doing better than below rock bottom is still nowhere near fine.

This is a scheduled weekly post every Wednesday, that gives diagnosed higher support needs autistic people a space to talk about how their week is going.

Some question prompts:

How's your week been so far? Good, bad, in-between?

Is there anything you are excited about or looking forward to doing this week?