Autism society

[HDDD]

I was just on their website for something else and noticed their autism and gender identity page so clicked through....www.autism.org.uk/advice-and-guidance/what-is-autism/autism-and-gender-identity
"Gender identity and biological sex are different things. People are usually assigned a gender at birth according to their genitalia – male or female. "
NOT HELPING ANYONE THIS ASSIGNED BUSINESS!

Totally agree about the superpowers. I hate that. Like you are not ok unless you have some special power. Books about autism for children often fall into this too. Most of them ended with [but those difficulties are ok/worth it because] they win prizes for writing stories/playing the drums amazingly well.

Yes Tibtom it's okay to be someone with no superpower my daughter is just a special and amazing just being average at everything or even below average.

It must make some people really anxious is they don't have any particular strong talent.

Reminds me of a mum when mine were at primary who said "you know, the great thing about having average kids is you don't have to spend every weekend trailing round the country going to competitions. You can do other stuff"

@Tibtom

Reminds me of a mum when mine were at primary who said "you know, the great thing about having average kids is you don't have to spend every weekend trailing round the country going to competitions. You can do other stuff"

What a well-balanced approach!

I'm too tired to read this now but it's been recommended to me and I think is relevant to the conversation.

quillette.com/2020/10/14/my-brief-spell-as-an-activist/?fbclid=IwAR1qfhrJ8Mx7Yf72_U30n3TPR73MbrPbNdnPT4MnTdRX8rCJ7J66I4bODH4

It’s a great article
”To ward off the ever-present threat of reason, I hid behind an ever-growing sense of defiant helplessness. I continued to extend my repertoire of victimhood, learning to soak up other people’s indignation and to nurture borrowed resentment. I had built my identity on the paradoxical symbiosis of empowerment and inability. My victimhood absolved me of agency and therefore, blame. Everything was someone else’s fault.“

I’d not come across New Discourses either.
newdiscourses.com/

We had a training session on disability inclusion last month and they talked about ‘identity based language’ ie disabled person vs person with a disability. I think the point they were making was about using what was preferred by the individual but I did wince at identity.

Thanks for that article - she's a really good writer, and it's great to see pieces like this that show people are thinking all this purity-spiralling through and coming out of the other side.

”To ward off the ever-present threat of reason, I hid behind an ever-growing sense of defiant helplessness. I continued to extend my repertoire of victimhood, learning to soak up other people’s indignation and to nurture borrowed resentment. I had built my identity on the paradoxical symbiosis of empowerment and inability. My victimhood absolved me of agency and therefore, blame. Everything was someone else’s fault.“

This could have been written about someone I know. I find it so frustrating - the way they act as if having special victimhood means you never have to make an effort or change anything about yourself, or take responsibility in any way. And you can't say anything because then you're the Oppressor.

I think there are strong parallels between these two groups, and I really think the discussions and experience of people with asd are a few years ahead and have been mirrored by trans/gender dialogue. My own opinion is that the merging of Asperger and Autism into ASD has lead to the most appalling enveloping and sidelining of those with an autism diagnosis (by which I mean those who previously would have been diagnosed as autistic not aspie). It is presented as a natural result of the merging of two parts of the whole and has meant there is really no representation for classically autistic people (almost like I’m having to use the dreaded “cis” terminology to discuss the core members of the group eh?) no support groups and very little funding, and yet “classic” autistics make up the majority of this group. Of course the longer people are able to swell the numbers of autistic people the smaller part “classic” autistics will make of the whole. In fact they are fairly irrelevant in any discussion of autism now.
I’m not sure if the path of the autistic experience of including more people in their descriptions is a mirror of what is happening with gender identity or we are more like canaries down the coal mine. If it’s the latter I’d say it’s not looking good down here.

I think you're probably right. I'm fairly new to all this, getting my diagnosis 4 years ago. I was referring to myself as aspie until it suddenly became a word that must not be spoken. The hatred that gets piled on people who use it. Ironically the argument is that those using it see themselves as superior to other autistic people. Those shouting about it most loudly are the self diagnosed and possibly/ probably not autistic crowd and the aspies that want the limelight.

There's no way that my experience is the same as someone who is non-verbal, incontinent, unable to hold down a job and be independent. It's not to say that my life is easy because it isn't but it's probably closer to a non autistic person's in many respects.

Personally I signed up for the Spectrum 10k research which is intending to look at the subdivisions more closely. That's currently on a hiatus due to being shouted down (with some valid and some wild conspiracy theory concerns imho).

I’m aware that several genetic markers have been seen in some autistic people but I’m not aware if that is true of those who would meet the criteria for a diagnosis of Aspergers. Of course it would probably be impossible to find out now as blanket diagnosis has made any research less focused and dialogue is almost impossible as you cannot easily express the now sub-group you are referring to.

@AvaCallanach

What is autism?

Autism is an atypical neurodevelopmental condition in which the brain systems respond differently to sensory stimuli, and have communication differences compared to typically wired brains. This manifests in differences that can be observed during development in social interaction and communication skills, and in the ability to respond flexibly to situations or information.

In part this is because of the different experiences of the sensory world, which can appear too bright/ too busy/ too noisy in the way it is set up for the neurotypical majority, especially in the modern world of electric lights, cars etc. On the other hand that sensory world can bring immense joy to many autistic people for example in exploring textures, smells etc in a way that passes most neurotypical people by (and is pathologised - eg saying an autistic child shouldn't sniff items or run their fingers gently over and through textures).

In part this is because of the communication differences which mean that navigating the social world is hard. For example neurotypical people "parse" language a lot; they are very imprecise or inaccurate and don't even notice; this can cause bewilderment. For example telling a class of 5 year olds to write about "what they are going to do at Christmas". Strictly speaking, until they have done it, none of them knows what they are going to do at Christmas. They can probably predict with some degree of confidence based on past experience, conversations they have had etc. But this is the kind of parsing of language that can cause confusion to an autistic child because they can't answer that question. They could answer if they were given an accurate task such as "write about some things you think you might do this Christmas". This is a disablement caused to a certain extent by the vagaries of neurotypical language use which NT people use in a more flexible, less accurate way.

So autism is indeed about being wired differently. The only common features are differences in communication and interaction, and difficulties with flexibility of thought in comparison with NT people. Evidence of areas of deep focus - and consequent fascination and knowledge - is also usual (again pathologised and often described as 'obsessional interests').

Thanks Ava/Susanna for this accurate, neutral and (obviously!) informed post. Part of the frustration I feel about the 'autism activism' movement of the last few years is the lack of clarity about autism. And yes, I very much see that the current autism activism trend echoes much of the self ID/TRA movement. It's all down to identity politics, but I very much reject the idea that you can be autistic 'if you feel you are' via self-diagnosis. [anger]

This should not diminish the experience of adults who want to investigate their own possible autism and find it difficult, impossible or just plain expensive to get an assessment. But like many many parents of children who have autism, I'm concerned that all the self-diagnosed adults proclaiming their autism are making the very diagnosis increasingly meaningless. It helps no-one.

My son is classically and frankly autistic. He's largely non-verbal, he has significant learning difficulties, a whole raft of complex sensory issues that make negotiating everyday life hard for him and for the whole family, and he will never, ever be able to manage on his own. We will die knowing that he will be reliant on the kindness and care of people who aren't related to him and can't ever love him as we do. So forgive me if I'm angry about the new activism that comes from highly articulate adults who - by anyone's standards - are doing 'ok'. They have jobs, relationships, children. I'm certainly not saying that people who present like this can't be on the autistic spectrum, but they do not speak for my son. And sadly, I've found that this new autism activism isn't generally at all interested in individuals like my son.

It is not impossible but does mean you need to recruit much larger numbers to the study - like the Spectrum 10k study.

There have beeen dozens of genes identified as associated with autism. Many are also part of syndromes with other symptoms/medical issues - from adhd to epilepsy or heart conditions. I feel quite cross that this study has been piled on like this by groups who benefit from being associated with more incapacitated individuals and therefore don't want to be split away from them and allow for more tailored support. Only do autism research that benefits ME!

They also railed against the possible commercial involvement and by doing so have ensured that the research is now carried out by commercial companies who will own the IP. Because genetic research is still being carried out.

We will die knowing that he will be reliant on the kindness and care of people who aren't related to him and can't ever love him as we do. So forgive me if I'm angry about the new activism that comes from highly articulate adults who - by anyone's standards - are doing 'ok'. They have jobs, relationships, children. I'm certainly not saying that people who present like this can't be on the autistic spectrum, but they do not speak for my son. And sadly, I've found that this new autism activism isn't generally at all interested in individuals like my son.

This reflects my feelings.

I remember when actually hearing from an autistic person about what their life was like, in a feature article or similar, was a novelty - less than 20 years ago. Not long after that, the Curious Incident book came out and I think that played a big part in making autism “fashionable” - it was after that that it became a thing for people to informally “diagnose” it in others/in small children. It’s gone from that to anyone who’s a bit introverted or nerdy being able to claim it as a special admirable identity.

Another thing that strikes me is that using social media to pontificate about your autism, join groups, jump on bandwagons and berate others at length, all verbally, doesn’t seem to me a particularly socially impaired kind of behaviour. Though I know “if you’ve met one autistic person, you’ve met one autistic person“ and I stand to be corrected.

Another thing that strikes me is that using social media to pontificate about your autism, join groups, jump on bandwagons and berate others at length, all verbally, doesn’t seem to me a particularly socially impaired kind of behaviour.

Do you think pontifying, jumping on bandwagons and barating others is socially adept behaviour?

'Non-verbal' generally is taken to mean having difficulty expressing yourself verbally sometimes being completely unable to do so. Sometimes selective mutism is included in this or advocates will say they are unable to speak in certain situations. It is another phrase that has been appropriated so means a much wider range than you expect. It is not uncommon for these individuals to have trouble speaking but can be very articulate in writing.

Pontificating (marvellous word) is fairly core to many articulate autistics skill set. I expect not seeing what it might be like for the other person might be common too. It’s certainly always presented as a component of the communication deficit that is part of ASD. Honestly, it not particularly one I’m convinced is across the board because I know many diagnosed and self diagnosed autistic adults who are clearly able to exchange ideas and explore others thinking.

The impact as I see it is that it is almost impossible to discuss autism on line, that there are no facilities/activities provided for the more severely impacted (because they are much more expensive), that education and health accommodations are harder to achieve, that support groups are a minefield and there aren’t more impacted families or people there, and that suggesting the world might be significantly harder to negotiate if you can’t communicate effectively, care for yourself or work will make you a pariah.
The number of teens who consider themselves transmen is noticeable.

GlomOfNit
So forgive me if I'm angry about the new activism that comes from highly articulate adults who - by anyone's standards - are doing 'ok'. They have jobs, relationships, children. I'm certainly not saying that people who present like this can't be on the autistic spectrum, but they do not speak for my son. And sadly, I've found that this new autism activism isn't generally at all interested in individuals like my son.

The problem is that so many different things are under the one label. Autism seems to be very poorly defined, in that regard. So someone like me, who can pass for neurotypical, IS different from you son, needing different things, yet it's all swept under the same label so it's impossible to coherently fight for the support that's needed as it's so, so varied.

I don't feel the autism activists you refer to represent me, either. My autism has interfered with me having a job, partner and children (I currently have none of these things, mid 30s). It has meant I have been vulnerable to poor treatment and abuse from men, and went unrecognised for so long I went through many dreadful experiences with various "services" (a friend of mine in the same boat ended up completing suicide). There is basically no support for autistic adults like me, and actually a lot of the support we'd need is around recognition of the challenges we face, for example a benefits system that recognises some people can only work part time due to disability. Or even being able to get a diagnosis.

Its just all so complicated because of how it massively interacts with social factors. I know someone who is likely on the spectrum, and struggles with things I do not, but they met a good partner at a young age and so had someone to organise the home and meals and things so they could focus on career and now earn a lot. In this instance I'm talking about a woman, but I strongly suspect it's much more likely the other way around, with autistic men more likely to be supported/organised (!) by a woman. (Did you know the suicide rate for autistic women is higher than for autistic men?)

Sorry, lost my thread a bit in my post there. Oops.
Just trying to point out there is a huge amount of suffering that happens, imo particularly for autistic women (due to social factors), and it's bonkers that trying to get recognition or support for this is lumped into the same category as the support needed by GlomOfNit's son.

I'm saving for a private assessment and those 'activists' don't represent me either for much the same reasons as @LemonCheesecakeForTea has outlined.

Unfortunately in Ireland there seems to be no support for newly diagnosed autistic adults other than to refer them to Facebook groups. I've seen some seriously crazy behaviour on them. Just recently there was a post from autistic people asking parents why they wanted their children to be able to speak! On another group that made a huge deal about 'inclusivity' and eschewing functioning labels. I saw a poster with a learning disability attacked by the mods for repeating a prohibited term that someone had said to them which they were upset about. The person meant no harm. They received very little understanding from the posters there who seemed to just view them as an annoyance.

I just joined to see if I could discuss coping skills/ways to potentially make my life better but am too afraid to open my mouth. Reddit seems to be a bit better in this respect so I mostly just hang out there now.

Do you think pontifying, jumping on bandwagons and barating others is socially adept behaviour?

Yes and no. It's social engagement, manipulation and asserting being "in the gang". I don't mean it's not possible to be autistic and do those things, but it seems counter to some of the things that are meant to typify autism, as discussed below. Having difficulty understand social situations, and verbal difficulties even if not non-verbal, are included.

Talking a lot about your special interests without detecting that other people are bored is often seen as a feature of autism (I'm trying to use language carefully) but that's not what I'm talking about - I mean the kind of purity spiralling and putting down of others for using the wrong terms and all that. It's like a kind of social jostling for position and seeking attention and approval, which we see a lot of online.

People I know with diagnosed autism would recoil from that or just be extremely bad at it - but again, I accept I don't know it all.

If you look at "queen bee" type behaviour, as an example of what's considered non-autistic social interaction, it's about having a gang, manipulating people socially and jostling for position. I don't think that's well-adjusted, healthy behaviour but it's more aligned to the social media bandwagon warrior type thing that I see a lot of online.

I know the point I'm trying to make! - but I don't mean to offend, so I apologise.

I understand what you're saying, QueenPeary.

Just musing, but I think it might make sense if we drill down into the reasons for different behaviours or viewpoints.

Autistic people we know (including myself) may well recoil from queen bee, popularity, having a gang type behaviour. But that's because we see it as unreasonable, shallow behaviour, after formative social experiences where we were definitely not part of the gang or socially adept enough to be able to manipulate people and join in with that sort of behaviour. Sort of seeing through the bullshit because we were on the outside (plus drive for fairness). On the other hand, if you have the opportunity to joing a "gang", be part of a group identity, at a relatively young age (teens on internet?) then perhaps you'd jump at the chance, plus it could fit in nicely with clear "right/wrong" rules and a tendency to black and white thinking.

Basically what I'm saying is we always have to consider autism+socialisation. Hence differences in presentation between autistic males and females, or across generations, or between individuals.

Yes I see what you mean lemon, thanks.

I think there’s a perception that most autistics are high functioning and eloquent/verbal whereas the opposite is true. Many (possibly most) people have never met a nonverbal autistic or an autistic with severe communication difficulties, and yet they think they understand autism and can speak for the autistic community as a whole.

I agree. And they're left out of the conversation entirely.

There's a heck of a lot of stereotyping within "Autism awareness."

I've found the "girls present like this" stuff exceptionally difficult as I've taught boys with autism who are as they describe and girls with autism who really aren't.

I fully appreciate it was championed as the general diagnostic criteria was stereotypically male, but it would have been better if they widened the ideas of what to look out for rather than gender stereotyped.

And it was a boy I taught who fitted the female stereotype who questioned his sex. Very sociable too. He was in our sen school but wasn't diagnosed with autism till the Tavistock suggested it (and they were really good, helping him to see that he was "just into fashion" as he had no issues with his body.)

I'm sure Temple Grandin would have been told she was trans if she was a teen now.

The "more likely trans" is yet another stereotype, thats rooted in yet more gender stereotypes.

nonverbal autistic or an autistic with severe communication difficulties

Children and adults who have these specific difficulties are extremely unlikely to "be trans." Which rather proves trans identity is a social issue stemming from difficulties with gender stereotypes.