What AUTISTIC people wish you knew

What autistic people wish you knew - 10 things we'd like you to know about autism.

This is part 2 of a mini-series I'm doing for World Autism Acceptance Week, which aims to educate, inform and raise awareness (and acceptance, obviously) of autistic people, especially how autism presents in adults.

My video on functioning labels and why "mild" autism doesn't really exist:

My video on masking and whether you can (or should) take the mask off:

My playlist for World Autism Acceptance Week 2020:

The communication study referenced:

[YoSamdySam]

What do you wish people knew about autism and autistic people?

[ginnystark]

This video isn't only what I wish neurotypical people knew about autism, but what I wish I had known years ago.

[anyaklum]

I think of autism a bit like a cultural or language barrier. Neither "culture" is explicitly better or worse in the way they interact with each other, but both sides need to learn about the other and make accommodations to be understood.

[kittyfantastic]

I wish people knew that it is pysichally painful to become overstimulated, to get to the point of melt down. It is not funny or cute. It hurts. For days afterwards.

[jayandriot]

This is a great summary, I want people to know that I am not broken, I do not need to be fixed, I’m just wired differently. Sam you are an angel.

[bunnygrill]

One of my hardest struggles is people not understanding that I can't necessarily do something easily just because I've done it a lot before

[axel]

I want people to know that kindness goes a long way.

[nutsuphanat]

Many doctors' views on autism are outdated. Case in point: The doctor who diagnosed me was in her 30s, and knows very well what autism is in modern standards, and was able to spot my autism behind my masking through studying my life history, and interviewing my family to come to a diagnosis. However, another doctor who is in her 60s to 70s who graduated from Med school many decades ago when autism was only diagnosed for people who are very much more obvious just told me I am not autistic after I sit down for 5-10 minutes without interviewing my families – a modern standard now used as tool for diagnosing autism.

[careysmith]

I joined reddit last fall, in hopes of reading some good tips or ideas on autism as my son (who is autistic) grows older. I read a few threads about women in autism, and was SHOCKED to see myself so clearly. My life has never made sense until I looked at it through the lens of autism. I absolutely love your videos, as we are similar in so many ways. Your insights into your behaviors have helped me so much.



I sent this one to my therapist in hopes she will understand why I feel the way I do. I'd love to pursue diagnosis, just to be able to get out from under the "she thinks she's autistic because of something she read on the internet". But there are zero professionals who can diagnose adults in my city. Thank you for stating that self-diagnosis is valid. I have no other options. This video is so good! Thank you!

[Miss-Hellcat]

I wish people knew that I never do things to intentionally hurt or insult anyone. I'm not empathic, but I'm not mean either. I just want to go about my day on my own terms.

[mmrose]

You know, that part when u talked about supressing stimming leading to poor mental health, it finally clicked why Ive felt so emotionally suppressed recently. My stim is singing, its what I am passionate about and how I communicate feelings, usually to myself. Since its "weird" to sing out loud for no apparent reason, Ive learned to keep it to myself and it really takes a toll, especially at work. If we can all accept everyone's and our own stims, it would really help bring more equality, with people on or not on the spectrum. Thank u for acknowledging this, I wish it were possible to subscribe more than once, have an awesome day😊❤🧡💛💚💙💜

[rileysvibin]

“there are some autistic people who report they don’t have any empathy, but there are a lot of neurotipical people who don’t as well” is a great quote 👏

[hippityhoppityilikemypriva]

Lately ive been stuck at home with my family, and I’ve felt really exposed and i don’t get the privacy and the space I normally get, and it’s been really hard, but sometimes when im in a bad space i just come and watch videos like yours and i feel a little more secure and a little more understood so thankyou.

[PixieoftheWood]

I just want to thank you so much for saying self diagnosis is valid. I tend to feel like I can't say that I'm autistic because I don't have a diagnosis, but getting a diagnosis would be so expensive that it would be financially crippling to even try to get one. At the same time, whenever I read or hear about autism, it fits my experiences so exactly that I feel a huge sense of relief, because finally there might be an explanation for why I've never been able to be normal. I'm actually stereotypical enough in my behaviors that I've been asked before if I was autistic, so it's nice to have someone else confirm that my self diagnosis can be valid.

[ubbrok]

"Sometimes, the nicer I am, the less comfortable I feel with the person." Hit so hard it fucking hurts. It's so exhausting.

[jamesbrown]

I appreciate what you said about self-diagnosis. The more I learn about autism, the more I’m convinced I am autistic. I can totally relate to so much of what you said. I’ll be 60 in a couple of months, and I’m finally starting to understand why I’ve had so much trouble with some things like telephones and dread over completely benign social situations. Thank you for your insights.

[chloechoularton]

Thank you go another excellent video! I wish people knew that the struggle is real. As an undiagnosed female, it can feel very lonely and scary trying to explain my experiences without being made to feel like I'm making it up.

[ReadySetAutismFamily]

Also as a father of an autistic daughter I'm starting to see I have a lot of the traits. As you just mentioned making a phone call that's exactly what I'm doing right now 😩. Thanks love the video 👍🏼

[elizabethf]

What I wish they knew is that if they interrupt my hyperfocus and make me engage them, it's physically painful.

[lahamh]

Your point about self assessment and the difficulty getting access to diagnosis is so true. The processes on the NHS is shocking. I was referred for an assessment in 2018 on the NHS and am still waiting. Since then I've moved to a new area and have been told by doctors that I am not eligible to be re-referred until I have 'self referred' to a charity organisation to go through CBT, and to then try antidepressants. Only AFTER these things have been done would I be eligible for a psychiatrists help officially. (Side note I completed a self referral in London in 2018 and went through CBT, which didnt help me, but now that Ive moved that no longer counts because the hospitals and doctors are run by diffferent trusts. Also, why should I be medicated?!)

Its taken 3 years of fighting the NHS to finally cave and pay for a private assessment to be told that I do have autism but even still, even with a private diagnosis the doctors are still reluctant to give any further help because essentially as a late diagnosed adult I've managed to 'make it this far'
We need more support not just for autism testing but also the broader mental health spectrum in the UK, and with autism, especially with masking and the real crippling mental health issues we can be left with there certainly needs to be more understanding!

There still seems to be a huge opinion that we need to be medicated in order to fit in and function in 'normal society' the thing is we function very well just in different ways. The more information people have the less ignorance there will be and that can only be a good thing.