I am an "autism expert". Ask me anything.

Ok

I hate this idea that lived experience is the only validity. I do have lived experience.

If I haven't got a brain tumour, can I be an expert brain surgeon? If I am not an engine, can I be an expert engineer?

There's an earlier post that touches on this, but yes.

If you think about the world a few hundred years ago and for all of prior humanity - people lived mostly in small communities where they would know most people and most people would know them. Lives were simpler in sensory terms - no screens, no cars, no bright lights, no planes, no harsh chemical smells of disinfectant or perfume. People were often born into trades. Being otherworldly was interpreted as religious or even sanctified - you could retreat from life and be a monk or nun, or a hermit. If you were wealthy, or male, you weren't really expected to have skills of looking after yourself. Someone else would provide food, clothes etc....

Modern post- Gove education, compounded by lockdowns, is causing a mental health emergency. Referrals to camhs went up, iirc, 81 percent 2017 to 2019, then a further 60 percent 2020-23. I am not great at maths, but I think that means where 100 referrals were made in 2016, in 2022 there would be 100+81+(60/100 of 181) = 289 referrals. I think this is a combination of social media and the online world, and the deliberately harder, overpacked curriculum with no proper routine arrangements for those who struggle academically (did you know, a perfectly decent mathematician, doing everything necessary at age 16 to pass their maths GCSE, will get about 25 percent on the higher paper? Imagine what it does to you mentally to not be able to do 75 percent of a paper - you really wouldn't feel like you were any good at maths, would you?)

Autism isn't "caused" by all this. People were always and have always been autistic. It's just that they didn't clash with the expectations of their environment so routinely; the world was by and large, in some ways, less ill fitted for ND people. (Plus there was no language for autism, outside of "eccentric", "loner" type words).

No, I don't think everybody is on a spectrum as in a linear "not at all autistic" to "most autistic ever" person. The spectrum is more like a wheel to mr. I will try to attach an example graphic. I do think it's possible to have issues in a few areas of the "spectrum wheel" but for this not to constitute autism....for example, I have some sensory issues, I cannot stand to be sticky, it makes me shudder. I also have done executive functioning issues around planning and task prioritization. But I don't have enough issues of neurovariation to "tick all the boxes" to make me autistic.

Thankyou :)

Lovely to hear! Thankyou for the kind words too.

I don't think our positions are mutually exclusive. As you say, autistic people need coping skills enough to live in the world as it is.

Some support in social understanding of the NT world is helpful, but not with the subtext of "this is the right way, if you learn this right way all will be well, your natural way is the wrong way". The balance is in fitting someone for life, versus trying to train them out of their natural nature. Offering autistic people the chance to experience friendships in which masking is unnecessary, where your friend doesn't take offence or take it personally if you tell them you are too peopled out to talk much today, where you can connect deeply over specialist subjects, isn't selling them short. It's a positive.

I guess in your analogy, I promote the idea that an English person living in Japan knows enough of Japanese culture and language that they can make themselves understood and understand the basic cultural rules sufficiently that they won't draw high levels of negative attention. However, it's fine for them to seek out other English expats for their close friendships, where they speak English and eat English foods without guilt or shame, rather than feeling like unless they can move through Japan indistinguishable from a natal Japanese person, there is something wrong with them and they have failed in living in Japan.

Sorry, no, though someone on the thread said they were working on something...I found a couple of blogs, is all.

NT - neurotypical. The more common brain type.
ND - neurodivergent - the less common brain type that includes the developmental conditions such as ADHD, autism, dyslexia, dyspraxia (developmental coordination disorder), developmental language disorder, etc.

Stepping out of response order to say to bumblebeebuzzy

You can't prevent autism in pregnancy, but I guess you reduce your chances of having an autistic child if you are NT, your partner is NT, and everyone in your family is NT. Plus if you don't have a prem baby, a baby with a genetic condition, learning disabilities etc. But that is largely beyond our control, thank heavens.

There have been studies looking into attempting to reduce likelihood of autism. Autism Speaks in America used to fund a lot of research, and in the UK we had the PACT research about 10 years ago which attempted to reduce "severity of symptoms" initially but has morphed into a way of (benignly) increasing communication attunement between parents and autistic children.

There have always been programmes such as ABA and son-rise (now renamed but I can't recall new name) that have made claims about reducing autism "symptoms".

However, nowadays, there are more people - particularly autistic people - saying that such approaches as ABA are dehumanising at worst, and just encourage better masking at best, and that it's ok to be autistic. My view is that some small aspects of ABA, such as PECS, used kindly and with clear purpose, can be a way to help autistic children who otherwise have no way of being predictably understood to have a way to express their needs; but I am not in favour generally of extinguishing behaviours etc unless these are harmful to the youngster or dangerous.

I appreciate that autism is a vast spectrum and that caring for youngsters who will need life long 24 hour care is not something that most people who embark on parenthood would have in their vision and expectation list. But just like everyone else, autistic people vary enormously in their talents, passions, roles, and lives. Imagine if we had stamped out autism hundreds of years ago - no Mozart, no Newton, no Emily Dickinson, no Einstein, no Tesla, no Bill Gates, no Pokémon.....
I would not change my autistic children (though I might make my son magically less avoidant of showering!). They deserve life, they are valid and wonderful and loved.