Autism - what would you want to tell people?

[What3words]

I might have a chance at work to do a talk on neurodiversity.

Not my main job at all! I have some ideas but just wondering. If you/your kids are neurodiverse what do you think are the main things you want others to know?!

And yes not all like rainman!

I'll recommend Chris packhams inside our autistic minds. I love that shows a diversity of autistic presentations -

I could do a "further info " list but how do I reduce it to a few things so as not to overwhelm?!

https://www.psychologytoday.com/gb/blog/women-autism-spectrum-disorder/202208/autistic-linear-spectrum-pie-chart-spectrum

I would also add on the empathy front that more autistic people have hyper-empathy than low empathy, if we didn't we'd never be able to mask. NTs are the ones who lack empathy (probably due to a lack of knowledge on autism) to us and make our lives very difficult when we misunderstand, do things that are illogical to them or let the mask slip briefly and it's bloody exhausting!

Have a look at the Mary Colley diagram - a colleague who gives similar talks at work uses that and it’s a great way to portray spiky strengths and corresponding areas where people may need more support or struggle.

While I don't agree we are all a bit autistic, I do think many of the diagnostic assessments now are very questionable, plus I do think its very possible to be neurodiverse but it be hard to pin down what best fit condition you may have as there is so much co-occurance and overlapping traits. (I wouldn't put that in a talk though!)

This is a really good new website: autismunderstood.co.uk/ which is made and aimed at teenagers but it's good for anyone to give them a non academic working understanding of autism (but please credit them!]

I say this as a NT parent with a ND child and husband, so my experience is from that perspective. I think it's essential that employers extend their 'bring your whole self to work' policies to ND people. My husband is a straight talker in a very woke company and he gets shit for not being more 'positive' and refusing to play games in trying to get the higher ups to do what needs to be done. It's absolute bullshit. They love to support every awareness day going but do absolutely nothing on a day to day basis to acknowledge that ND people also work there. I worked in professional services for years and would say the exact same about that industry. Political game playing and happy-clappy positivity are a minefield for ND people, and the lack of consideration for ND employees just shows how thin most diversity and inclusion policies really are.

Not to make assumptions based on a diagnosis.

when you have met one person with autism you have met one person with autism. Don’t assume because your aunts best friends dogwalker reacts in one way everyone will!

DD is autistic, diagnosed late at 17. No-one would know it at first meeting her. I'd like people to realise that masking is real, and causes a severe level of exhaustion at the end of every day. I would like people to accept that someone can be autistic but sill be lonely, just not know how to have friends. And, as many others have said, we are not all on the spectrum.

That some people who have autism are severely affected by their autism all the time, not mental health not learning disability their autism.

That some families want a cure or would remove the autism if they could.

Autism is not a super power.

Autism is not an identity, it is a disability which requires deficits in order to be diagnosed.

For many now the diagnosis doesn't reflect their needs because of the varying presentations of the people with the diagnosis.

That those who aren't able to communicate and articulate their needs don't always have a voice in the autism community.

I'd let them know that Neurodiverse conditions aren't linear/consistent (in particular, im thinking ASD and ADHD, as they are what i know)
That there are days I'm able to focus and plan, days I'm not. Days noise isn't a factor, days it sends me over the edge. Etc etc.
The spoon theory was devised to explain pain and fatigue management, but also works for this.

The thought of being in your audience fills me dread because I know at some point "autism is a spectrum" is going to be trotted out. I don't disagree with the statement, but with how it's become essentially meaningless.

I'm an aspie. I feel zero fellowship/kinship/association with people who are further down the spectrum. I might be autistic but I'm certainly not that sort of autistic and don't want to be considered in the same way.

I don't get upset when people talk about curing autism. It seems a perfectly sensible goal and one I wholeheartedly support. I'm 100% not bothered about it in theory meaning I wouldn't have been born. That sounds like a problem for future hypothetical not me, which is at least three removes from things I'm good at caring about.

If your presentation is going to focus more on the Aspergers (and I have good reason for sticking with this label) then maybe covering

• Masking - yes, it's absolutely exhausting and it's a learned skill you have to keep working on

• Eye contact - it's not that I don't want to make eye contact with you. It's that making eye contact with you is a deeply unpleasant experience. This should probably be more expanded out to "it's not a case of 'just ignore the sensation'"

• There's no secret autist clubhouse where we get together and agree on things. There's a pretty big divide in the community with plenty of people not wanting to be part of an autistic community.

• If we're really lucky we get to add some extra wonky brain stuff to the autism. So what you see might not be the autism but the ADHD/ADD/Dyspraxia/Face Blindness etc.

That functioning levels are so unhelpful!

@Throwawaytocomplain I completely get where your husband is coming from. I've noticed that TikTok Autism has become very puritanical around language. Because I just absolutely love being told by someone that I'm not allowed to describe myself as autistic but instead as "a person with autism".

My current gripe is the fact that many of us had a really handy label. Aspergers - separated us from the rain man and non-verbal types, made it nice and easy. Someone could refer to their children as going off and doing aspie stuff and you'd completely get it.

Now you say Aspergers and it's "that's not a real thing now, it's an Autism Spectrum Disorder" (please read that in a whiny nasal pedant voice) or "Asperger was a nazi so we need to change the name". Well so was Coco Chanel and I don't see anyone making a fuss about that

Please can I recommend you check you NeuroWild on Facebook or other social media. She has amazing graphics and summaries.

neuroclastic website has the great explanation of what the spectrum actually means so I would borrow that

but yes what I’d most like people to know is what the spectrum really means and also that autism is a dynamic disability so my daughter might be able to cope with a noisy place one day but not the next

that our goal is not to make ND people appear NT it is to support ND people to be themselves and thrive in this world through making the accommodations and adjustments

Hi there, I would also mention something about multiple disabilities and autism as well, since I am visually impaired, but I am affected by a lot of other issues that get blamed on my visual impairment, and nothing else. With some support, I just bought a home in Greece, and have accomplished so much in the past six months, I’ve got my residency, got in a bank account, improved my Greek, learned to navigate a new neighborhood and done so much, even with the issues I face. I have learned to persevere, but I’ve also had to explain over the years that I do things very differently, even from most people with official impairment because I have additional challenges. When I have the support that I need, I thrive. So yes, please do focus on the positives, especially if it’s in an educational setting because most people just don’t expect anything of somebody with an additional need and they don’t realize that the support they provide, it’s so important for a person to do well, and they are perfectly capable of doing well.

@ChadCMulligan as a parent of someone who would have previously been given the classical/ kanners autism dx I completely agree that they need to separate out again those more impacted and am glad that profound autism now has a place. I do use aspergers in real life when describing what my child isn't in terms of autism.

I do find the opposite tho that I'm told to describe my child as being autistic rather than has autism. The actually autistic people are really good at this.

At OP maybe mentioning the devisive nature of language and how various groups try to push for certain phrases/ words over others? Aspergers, has autism/ is autistic, severe autism all seem to be argument starters.

I assume you are autistic yourself?
I had the best ever l talk from a man who told us his life story with bullying and grown adults not accepting him at work never forgotten it was v powerful

As a NT mother with a young son with what would have been known as Asperger's this is the message I want to read. I get panicky reading some autistic culture messages on social media.
I also cannot understand why we can't use Asperger's anymore when that's exactly what I use to get people to understand my family and it always works.

We are all ND and I don't feel comfortable talking about ASD because whatever you say you offend someone. I only talk with safe people. A fellow parent asked me something this week no one else ever has and cried at the honesty.

Maybe I'd say that. Your judged 360 degrees even and especially by other ND people. The black and white thinking silences your lived experience as its not their experience.

My 16yr old autistic son often tells people that he is sorry if he appears rude but his autism makes it difficult for him not to be too blunt. He finds that that makes him less tressed and people more tolerant. He is also open to being corrected and often asks why something is better said one way rather than his way. He would want people to know that he may be autistic but he is still open to discussion and debate and that Boone should worry about how they speak to him because if they are unclear or appear rude to him he will be quick to point it out!

People who can read and write being offended when you say severe but your child can't even talk or communicate by any means. There said it. I will be shot down.

Hence parents like me are like mushrooms, clump together in the dark and fed shit

I have a child with a diagnosis of Aspergers. Diagnosed in 2020 so the term is still in use or has been until relatively recently. I suspect I may also be neurodiverse in some way and fit the classic ‘high achieving female’ demographic.

i tend to talk about the ways in which his daily life is more difficult, which for the most part seem to centre of extreme anxiety. A good example is his fear of dogs, and a walk we went on where after a couple of hours he mentioned that he had seen 37 dogs. He’s done exceptionally well and now tolerates most dogs in the same space as him whereas at one point he wouldn’t leave the house in case he saw one. That said, his fear has not gone away, he has just learned to manage it. Which is completely and utterly exhausting for him. He also worries about things that most kids don’t even think about - currently he is concerned about jury service which is at least a decade away for him.

I also talk about how some of his best personality traits are related to his autism. He is basically incapable of lying. He has an amazing memory and also sees the world in a totally different way to most people. At preschool age we had an in depth talk about whether or not many of the artefacts in the British Museum should be there in the first place. He has an incredibly strong sense of justice, and is incredibly empathetic.

he also has what I would describe as a split personality - he can be incredibly Jekyll and Hyde. When triggered he is like a different person, completely unable of reasonable/rational thought. This state can continue for several hours, but when he snaps out of it it’s like a switch.

he appears to not have much in the way of a visual imagination; he gets incredibly anxious about trying new things. That can be really challenging to parent as he might wake me at 3am to tell me he doesn’t want to do a planned activity. Sometimes over several days.

he is so good at masking that he is pretty much the model child outside of home. He thrives on rules and knowing where he stands.

when he is being difficult, he is not choosing to do so. But it can be incredibly difficult for him and everyone around him to deal with.

That ketogenic metabolic therapy has shown to be hugely effective for kids with autism.

That it's not an illness. I was diagnosed a couple of years ago and let my supervisor know that that was why I was so wary of going on the phones and preferred to do emails or social media (customer service job). Soon afterwards I was given a new role and we had a chat about it before my training. He wrote up the details of the conversation and emailed it to me, and he'd written something along the lines of me not expecting my illness to cause any issues in my new role.

I made him correct it.