National Autistic Society - yikes

[NotPurpleAnymore]

There's a lot of discussion about autistic people saying they identify as trans.

Here is an article currently being promoted on Twitter by the NAS twitter.com/Autism/status/1588508665308667905?t=RsbiDJqsNfDKGq9u0fCwig&s=19

To my mind, it seems to be celebrating top surgery and conflating this woman's late autism diagnosis with her decision that she is non binary.

Lots of talk about 'being seen'.

Does this make anyone else feel very uncomfortable? I think the unquestioning nature of the article makes it irresponsible.

She went to specialist nursery, school, college until 25. She wasn’t toilet trained until 10, she still wears pads on the odd occasion she does leave the house to go to the hospital because she regularly has accidents. She still headbangs and bites (also hits/kicks/headbutts…). I don’t know when she first communicated verbally as I didn’t know them then but she is barely verbal now. Yes she still requires someone to wash her (also brush her teeth/hair/dress) and assistance/prompting to eat (that is the actual eating, she requires someone to do all of the cooking/preparing) and that isn’t going to change.

To give you an idea of her needs, I helped with my neighbour with her DD’s PIP renewal earlier this year and she scored 58 points for daily living. And 12 for mobility.

I think it was more that there was very little awareness of autism in the general population back in the 1970s and earlier - not in the average working class family, anyway. I didn't know any children, male or female, with autism - I didn't even hear the word for the first time until the early 1990s. It isn't because all the people now being diagnosed in their middle-age 'present subtly' - it's because pretty much no one was diagnosed in the era of our youth.

@PurgatoryOfPotholes I agree it is exploitation as are the revolting nhs fliers coaching young girls on how to service older men. Grim

@TheReallyUsefulCrew The difficulties may have been attributed to a “bigger diagnosis” I believe autism could only be diagnosed if the difficulty wasn’t better explained by damage, learning or other disability, or neglect.
It became more common to diagnose asd along side LD or language delays etc fairly recently.
I don’t think it’s impossible to be misdiagnosed or not diagnosed early, I do think it’s very unlikely that a late/self diagnosed individual who is posting here is like to be significantly impacted.

Whilst that may be the case, it is incorrect to state an adult diagnosis means there’s a more subtle presentation. That isn’t always the case.

In my neighbour’s case there wasn’t an official diagnosis at all other than anxiety and depression as an older child and teen.

Kanner had male and female patients as did Asperger. Between them they pretty much defined the condition in and around the second world wall and Lorna Wings research was in the mid to late 70s and I’m pretty sure recognised girls as having Autism/Aspergers.

There are more autistic people now, and in higher proportions of population but this isn’t just a result of moving boundaries of diagnosis.

I do remember a few people with autism diagnoses from my youth in the 1960s/1970s. One was a girl. But diagnoses were very much rarer and most diagnoses were given to people with much lower social and personal function, worse communication, severe behaviour issues, and low IQ - Kanner's or "classic" autism. About 1 in 4 were female. Later on (mid 1980s onwards) there were diagnoses of Asperger's Syndrome and "high functioning" autism and the proportion of girls diagnosed with these was much lower - around 1 in 10 for a long time.

There was a kind of circular argument around diagnosis - fewer girls had the diagnosis, so it wasn't considered, so fewer diagnoses were given to girls... and it does seem to present differently in girls. Also the diagnostic criteria and the different categories are not cast in stone, 20 years ago (ish) there was controversy about whether Asperger's Syndrome was just a variety of autism or a separate condition.

You are correct @TheReallyUsefulCrew there will be cases where diagnosis is later but I sincerely doubt your neighbours child was thought to be suffering from anxiety and depression as the root cause of her difficulties. It’s far more likely she has complex needs that interlock and so is being diagnosed with each aspect of her condition as and when it will help her. I’m uncomfortable talking about her specific case as you aren’t her parent and have only a limited window into her experience.

In a more general way I think that MOST autistics who are “missed” as children are likely to have fairly brilliant skill compared to their contemporaries who are diagnosed in early childhood. It’s a logical conclusion.

Back in 2004, I remember sitting in a library, reading a book about Asperger's Syndrome that stated it was much rarer in girls. I wish I could remember the exact ratio it gave, but I can't.

At around that time, I knew a family where a boy had been diagnosed with AS at 12. His younger sister, who was very very similar, went on to be diagnosed with dyspraxia by a different ed psych at a similar age. In retrospect, I'd say it was AS and the support her brother received would have been better suited to her than what she did get.

Also children with diagnoses were moved out of mainstream education, possibly out of education altogether. So they would have been a lot less visible.

The Warnock Report which recommended inclusion in mainstream schools for children with all but the most severe disabilities was published in 1978.

I don't understand how autism factors in to their non-binary identity.

@GrrrrAReform _ think I do. DS is autistic and has recently been on a journey of - for himn - gobsmacking revelations that much of how he feels is totally normal. He started opening up to me about emotions he has and when i told him everyone has these he didn;t believe me and asked around and discovered everyone has a whole range of emotions below the surface. they just look like they are cruising through life. He told me he;d spent his whole life thinking there was something badly, fundamentally wrong with him. That he was 'broken'. This, even though he comes from a loving, happy family that has always accepted him as he is and never forced him to mask or criticised his obsessions etc.

I do wonder if a lot of autistic people feel fundmentally 'wrong' in their own skin because from a very young age their peers spot they are slightly different and shun them. School do little to help counter this. The child then gets traumatised and displays disturbed behavioiur which is investigated and they get a label: autistic. Which they think proves they were right all along to feel fundamentally 'wrong'. I can see how that feeling might manifest itself as thinking you are in the wrong body/gender/sex.

The job is to make autistic people feel fine as they are. That they don;t need any radical overhaul in order to be socially accepted.

My neighbour’s DD doesn’t have any other diagnoses. Her only diagnoses are ASD, generalised anxiety and depression. I know that for certain as a) I helped with her PIP renewal and read the evidence, and b) her mother has told me. She does have complex needs, but there are no other diagnoses. Yes, I’m not her parent but to insist there must be other diagnoses is incorrect and quite frankly offensive.

There is a scary bit in one of Stella O'Malley's podcats where she describes a conversation with a mother and her child who is an autistic transboy (i.e. physically female) about the risks of male hormones to female bodies. The transboy explains to the adults that although these risks apply to Stella he is safe, they don't apply to him because he is trans and really male.

I shudder to think what that does to "informed consent".

I’m sorry if I’ve offended you

@TheReallyUsefulCrew that wasn’t my intention. I am often offended and if my neighbour helped me fill out a form I would be mightily offended by her discussing our particular situation in this way. So I’m not going to engage beyond reiterating In a more general way I think that MOST autistics who are “missed” as children are likely to have fairly brilliant skill compared to their contemporaries who are diagnosed in early childhood.

The transboy explains to the adults that although these risks apply to Stella he is safe, they don't apply to him because he is trans and really male. I would say this demonstrates clearly that the person lacks capacity in this area, but I’m old school and the whole medicating and body mutilating as a cure for hating your body is pretty nonsensical to me.

I know my neighbour very well, she wouldn’t be offended. I wouldn’t have posted if she would be. It’s an anonymous forum. I have been very careful, no one is going to be able to identify my neighbour or her DD. It could apply to many up and down the country.

The job is to make autistic people feel fine as they are. That they don;t need any radical overhaul in order to be socially accepted.
amen

Going back to the adults wanting to undermine parents, I really do think there is a big issue with autistic kids as much as in the trans community. And the two cross over so much that I have real fears that DS will have autistic/trans adults in social media forums influencing him negatively.

This is a shame as I would like him to have access to online communities that help him, that speak about autism from other perspectives, but there is so much cult ideology. And this is combined with the autistic adult community speaking for ALL autistics with a superior voice, but which I notice misses the safeguarding and vulnerability issues of significant autism. You won’t find discussions on toilet training an older child for example.

And this is one issue that is pertinent to the trans debate. DS has a huge issue around toilets and it’s taken years of careful support just to use one, so opening up toilets to any sex is an issue on many levels.

DS is developmentally extremely immature and has emerging mental health issues also. His teenage hood is going to be a minefield!

I think this is graphically shown by the NAS who so openly are now promoting these trans autistic ‘influencers’. It is literally their job to influence on social media.

I feel quite tired and exasperated that the very communities, whether this is NAS, or online autistic adult led forums, rather than supporting autistic DS are actively encouraging emotionally, physically and mentally unsafe terminologies and influence from the trans gender trends. And for me this is not just medical transitioning, it is the terminology and concepts that I also think will be problematic for DS. Both in using the ‘wrong’ word, and in being told that actually he can be a she, or a they, or non binary. These are all ideologies with ideas behind them that are problematic for a child who is developmentally quite delayed.

I would say this demonstrates clearly that the person lacks capacity in this area,

And I would agree. The problem is that how would you know they lacked that capacity unless you explored deeply and asked the right questions first? And how do you explore these questions in a purely affirmative model where if people say they want to transition then that's what's best for them, and in a consent model where if someone says they understand the implications then we must assume that they do? And in a societty where it's becoming seen as discriminatory to ask these deeper questions at all?

I do think that some young people with high-functioning autism get to transition because their verbal and logical skills mean they can sound convincing as if they are talking sense although their deeper understanding might be non-existent or full of confusions. If you don't explore underneath the words to what they think the words mean then you don't find out.

Influence is a complicated issue @Bananasinpyjamas21 Our kids need social contact, we can't cut them off altogether or keep them safe from dangerous influences forever. But I would like to see an organisation like NAS take this particular danger much more seriously.

I would absolutely have done this 30 years ago, but thankfully there were adults who knew affirming permanent changes to young bodies was a truly shit idea

This twitter response says it all really.

Bananasinpyjamas21 I think this is graphically shown by the NAS who so openly are now promoting these trans autistic ‘influencers’. It is literally their job to influence on social media.

Despite clearly a lot of misunderstandings on this thread, this is where I think we can both agree. These people are the most visible/shout the loudest but don't represent either your son (as you have outlined) OR autistic adults like me (with no support who are using our limited energy to make sure we've eaten, showered, not become homeless etc). I look at them incredulous that they have so much clout when being marginalised/not having social influence seems to be a more common autistic experience, and wonder who does their shopping or laundry or any of the things the rest of us (relatively highly functioning* autistic people) use up our energy on.
I'm starting to wonder if the reason gender critical voices seem lacking in this area is because we are largely female, and trying to keep our heads above water in daily life rather than having the time or energy to piss about "influencing". Those stuck doing the "wifework" (mothers of autistic children, and autistic adult females who are less likely to have a partner to do these things for them) are maybe more likely to be acutely aware of sex role stereotypes and wanting to erase, not endorse them. But more likely to have little voice precisely because of the wifework load.

@ProtectAndTerf it is very heartening that as an adult autistic voice you also see the potential harms on different levels, for both yourself, other people and my DS. That fills me with a little hope. NAS despite several critical voices to the trans gender influencer post, has not retracted or discussed, it’s worrying. And yet they did not even comment as far as I know on the CAS report.

@AmaryllisNightAndDay yes it is a real dilemma with social media. I feel caught in a time where we are only just realizing how impressionable it is on teenagers, with a very vulnerable child, in the void. My older child, is not autistic but ND and handles media because he has a good framework, which my autistic child does not. I know as soon as DS looks up social media he will want to find out about autism (which is good and natural), however because of the algorithms and dominance of trans autistic influencers, these will be very prominent. I am not sure a completely open social media will be OK for a very long time and may instead find out about smaller local networks, and ways of finding out information that are from credible, accountable sources.

It’s perfectly ok not to engage with social media at all. Despite what you may think there are a sizeable minority in every year at school who don’t. It really isn’t a good place for any child.

As far as this idea of missing a diagnonis:

I think there is a differernce between kids who grew up seeming realtivly ormal, maybe struggling a bit and a bit odd, who were never diagnosed, and perhaps it would have been helpful for them. You could say that these kids were missed in sense.

And kids who were clearly severely impacted but did not get a specific diagnosis of autism.

It's worth remembering that an awful lot of conditions in the past were not given specific conditions and often were lumped together under a more general term. There are a lot of reasons for that, less clarity about differentiating some things, but also I would say that there was less emphasis on putting a name to things.

Part of the reason for the current tendency to look for specific diagnosis is because it can lead to specialized therapies, and because it is attached to funding. In the past neither of those things were true in the same way they are now. There weren't as many specialized therapies, and you didn't need a diagnosis to access them.

Agreed but what about the teenage girls who are diagnosed but now are being shown transition as a way out of teenage anxiety and in some instances as a way out if autism.

@NotPurpleAnymore - thank you for starting this thread