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.

I sort of agree Mangy, I think ‘Autism’ is very likely a whole series of conditions and not a single condition at all. You see this with genetic syndromes - autism is just part of the package and often considered atypical. I think it is probably more accurate to consider autistic behaviours are one of a range of symptoms for different conditions. That is why their is so much heterogeneity not only in visible symptoms but also in brain development in people currently grouped together as autistic. However, I can also see strong resistance from the ‘autism community’, for whom it is an identity more than anything else, to any attempt to identify and split off these conditions.

As for adult autistics, especially late diagnosed ones with all the fervour of a new convert, speaking for my child. How dare you. You don’t know him. Autism isn’t all he is so what gives you more knowledge about him than me who has seen him grow up, who shares half his genetics, who knows his life, his siblings, his father? What do you know of being dyspraxic, left handed, musically talented, of his medical issues, his culture? By all means talk about your issues and what works for you, maybe we can learn from it, there may be some overlaps. But don’t expect to speak for or over my child as I support him, guide him and teach him to advocate for himself as much as he can.

I think ‘Autism’ is very likely a whole series of conditions and not a single condition at all. in some ways this is true for EVERY diagnosis. The diagnosis isn’t always a descriptor of a CAUSE of symptoms more a description of a set of symptoms that are seen in people who can be helped with similar therapy/drugs/intervention. Except in the case of ASD the treatment needed ISN’T the same because the pool of people is too wide and lots of people have jumped in too further diluting the ability to see what helps.

Thanks @Ericaequites that's kind to say. I would say I'm a try my best mum sometimes I don't do as well but sometimes I do!

But that's parenting for you.

There whole series of conditions makes sense and would explain the crossovers between autism, ADHD, dyslexia, dyspraxia.

I'm sure it is in some way genetic as are all ND, otherwise it would be statistically wierd to get a family like mine were all children are ND in some way. As are a lot of the other families I know with an autistic child/parent.

Over the last five generations, my mother’s family has a rich mix of high functioning autism, ADD, dyslexia, and dyspraxia. The earliest persons in this group were born in the teens and twenties, so are diagnosed by family memories and recollections. One had schizophrenia; another was just “peculiar”. My extended family is close and wasn’t in denial.

Once again, reading this thread, my heart sinks and I feel so disappointed to read what I've read so many times before. Autistic mum here (one of the clearly so subtly affected it doesn't really matter or I would have been diagnosed sooner types...[sarcasm]) with 2 autistic kids. My son was diagnosed at 2 and has support needs high enough to likely need to live with me as an adult. I fought to have my daughter assessed at 8 as I knew she'd need her autism diagnosis if she was going to experience the problems I've had in life in order to get the support she needs. Little did I know she'd be declaring herself a boy only a year later which came as a huge shock. I took the stance that I would focus on the sensory aspects of clothing, haircuts etc, ie. let her wear gender non-specific clothes and let her keep her hair short but help her maintain her friendships and show her positive female role models. The talk of being trans subsided but has come back with a bang the last few months. Thankfully she's agreed to the compromise of being a 'boy' at school and a girl at home. It's bloody hard going. I have to cope with a child who is enthralled by gender ideology while protecting my other child from it. His teacher contacted me in some panic as he was so obviously confused about what constituted a boy or a girl so I had to explain the situation to her. What makes it all the more difficult is not being able to approach autism organisations I have been involved with in the past for some support. I know, like the NAS, that most of them now embrace gender ideology, especially the supposed correlation between autism and identifying as the opposite gender or being nonbinary. Then, I come on platforms like this one and know that I'd never receive the understanding which would be so helpful in this situation. Often, it feels like parenting in general and parenting autistic children in particular is some kind of competitive sport. It isn't. Also, autistic people like me might not have lived yours or your child's life but we've lived our own with all it's autistic difficulties and it would be refreshing not to be dismissed or spoken to or about in snide condescension.

Sure, there are lots of things like this. I wouldn't say every, in some cases there are illnesses or conditions with a very specific nature that is well understood.

In general I would say many people struggle with the idea that some named conditions may be kind of put under one umbrella without any surety that they are really the same.

There are diagnosis with harder borders and less and more defined root causes.

I received the national autistic society , “ your autism “ magazine today , it managed to have a whole article about the menopause, using such phrases as “ people who have periods “.

So do we think NAS are
promoting transitioning?
embracing trans ideology?
supporting trans autistics?
safeguarding vulnerable teens?
supporting non-trans autistics understanding?

and what SHOULD they be doing?

Good question @Itisbetter

• I do not think NAS should be promoting trans influencers, autistic or not. This is rubber stamping transitioning and platforming people.
• It should be asking tough questions of healthcare and debating the CASS report (1/3 referrals are autistic). At the very least having it as a summary of the report on it’s website with some of the highlighted concerns outlined.
• Until we are clearer on the relationship between autism and trans, I do not think NAS should be ‘on a side’ which is uncritical of this being a potentially problematic association esp with regards children. There is a lot to learn and I would like to see NAS as more a gateway to good information rather than pushing an agenda.
• Some of this information should err on the ‘first do no harm’ principal when we do not know enough about an area. NAS should not promote untested, relatively new unknown ideologies to vulnerable autistic teens. It should wait and explore all sides to this.

I agree but they ARE going to be a first port of call for many.

I wrote to NAS a couple of months ago about their website's own gender information page which is dodgy as fuck. (Not the wording I used )
I wrote, on paper, to the CEO and other trustees, at the charity's postal address in London, as well as copying to the website electronic feedback form. I explained why my family personally needed reliable safe information and how their website failed to provide it.

They sent a letter of acknowledgement a couple of weeks ago, and a letter yesterday saying they're going to be doing a review over the next few months and inviting me to talk to them.

I think there's a big danger from trans ideology for young people with autism who are very "high functioning", who have a lot of autonomy and are embedded in wider society and especially online society, but are still profoundly socially and emotionally vulnerable.

In the long run young people (and families) need concrete factual information and resources properly tuned to the communication needs of people with ASCs. Social stories! Basic sex education which is not undermined by word games. Yes you can still get pregnant if you're a girl and your sex partner is a transgirl. Medical information - what do hormones actually do to you? No, changing your pronouns doesn't protect you. What about surgery? Social perspective information - how will other people react to a nearly naked six foot physically intact young transwoman in the women's changing rooms at the pool?

And as @Bananasinpyjamas21 says we need safe resources about gender issues that don't channel young people towards medical and surgical transition. Maybe it's still too uncertain, still too early in the day for any organisation to produce all these resources, but they're sorely needed.

So don't despair. Let's keep telling NAS what we need! And tell them what we don't need - links to people uncritically promoting medical and surgical transition, autistic or not, in the form of a charming "personal story" with no downside.

Thank you @AmaryllisNightAndDay
I am going to do the same. You express the concerns I have beautifully.

@AmaryllisNightAndDay oh well done 👏🏽

This great, Amaryllis. Thank you.

Thread from twitter about the NAS.

When I worked at the absolute hell-hole that is The National Autistic Society, I was sent on managers training around supporting people with sex and sexuality. The trainer was a woman with an autistic son and she disclosed that she regularly took him to Amsterdam to exploit women in prostitution. She told us that she was in talks with policy makers at NAS which would mandate support workers sourcing women in prostitution for service users. Any questions I asked about ethics, consent, legality were laughed off and I was treated like Mary Whitehouse.

We were also taught how to use a dildo so that we could ostensibly show (obviously male) service users how to masturbate (there was no disembodied vulva counterpart) using pornography as a visual aid. Again, no discussion around the ethics of doing this with SUs who had been assessed as having limited capacity. That was one of the (many) reasons I walked out giving no notice. Other reasons included financial abuse, medical abuse, physical abuse that was subject to a cover up operation when I reported.

twitter

Purgatoryofpotholes , that sounds horrendous, I know an NAS school near me , shut suddenly due to multiple failings.

I have autism, eventually diagnosed after my daughters consultant gently suggested I speak to my gp about it.

From what I’ve seen the same thing that is happening to ‘genuine’ trans people (not sure how else to put it) is the same thing that is happening to autistic people.

The NAS is a society whose sole focus seems to be making money out of creating autism as an identity, like Stonewall.

They also need to market this trendy identity to the ‘not actually autistic but felt a bit antisocial last Tuesday so self diagnosed online and loves to feel special/part of a ‘community’ people to stay relevant, as the actual numbers of autistic people wouldn’t be enough to sustain the level of power/funding they need.

To this end an official diagnosis by a professional is seen as outdated and unnecessary now. Just identifying as a disabled person is enough to become one. I waited for two years for a diagnosis but as my difficulties aren’t that profound (to me I’m different but was just curious about what caused some of the difficulties I have) so I didn’t mind the wait.

You can even buy some special merchandise to mark yourself out as a member of the clan. Sunflower lanyards/puzzle pieces.

I would never presume to speak for all autistic people. I can only say that the LAST thing I would ever want to do would be to join a nasty vocal online community, to associate with people who thought medical proof was just a barrier to being part of a group rather than necessary, or mark myself out for extra attention when in public.

I think, just as is the case for transgender people with diagnosed gender dysphoria, the real people who need a bit of support are just lost in the sea of damaged individuals. Individuals who are desperate to belong to some sort of group,
and who are happy to trample the actual group into the ground if they diverge from the new prescribed way of thinking. They defend their ‘right’ to identify as what they see as a special identity so viciously because they know deep down that it’s all bullshit.

I’ll probably get deleted for this, for some word or thought I’ve unknowingly expressed that’s ‘banned’. I’m used to that, I already had to leave a support group I thought was going to be for mothers with autism and turned out to be an intimidating rally of fanatics, including men. I’m just happy that I found a thread that finally let me get this off my chest.

I hadn’t thought about equating NAS with Stonewall but it is an interesting comparison. I also see various small groups of ‘self identifies as neurodivergent’ selling their ‘autism training/consultancy’ to the public sector with a similar lack of due diligence of these trainers by those signing up as with trans EDI organisation. Self-identifying seems to be all the qualifications you need. Your ‘lived experience’ is all that matters.

Couple of things though - if you express any liking for the puzzles/jigsaws you will be torn limb from limb by the ‘community’. And this ”I waited for two years for a diagnosis but as my difficulties aren’t that profound (to me I’m different but was just curious about what caused some of the difficulties I have)” would be considered heresy.

The real heresy is suggesting that having birthed, raised, and supported an autistic person to adulthood particularly if they have learning difficulties or communication deficits (or both) that you might know anything at all about their experience or be needed for them to participate in any way. No you must be pilloried for your oppression (ffs!) and silenced least you say something that doesn’t fit with the oh so vocal, oh so able, oh so arsehole, who found out they were autistic last week probably on their lunch break while flicking through their phone. 🙄. Who genuinely thinks they should argue that they are severely autistic tooooooo. Who uses words like complex, high functioning, and profound like Christmas decorations and rarely have met anyone with more extreme challenges. I’ve lost count of the times that I’ve seen more significant differences dismissed as “yes well that’s not the autism that’s learning disability”. Nope, often it’s just good old fashioned autism. You know the diagnosis that was describing children who had such impaired social function that many failed to learn to talk, or manage in society.
If NAS aren’t actively protecting autistics and their families from the exploitation of sexually suspect messages/information, and they aren’t advocating for the least able, who ARE they for?

Thank you for that post Tinseltosser, it resonated with me a lot, and I'm glad you can express all those things here.

I don't have a diagnosis and don't call myself autistic (and I'm not sure at all if I am) but I was told by my NHS psychologist that she suspected I was so I've considered it as a possibility. But I'm seriously put off the thought of looking into it further by the whole "community" and "identity" and people self-diagnosing and going on about superpowers and making a massive public thing about it on social media. Because whatever it is that I am - possibly just a smalltalk-loathing introvert with some attachment and PTSD-like issues from an abusive childhood, or possibly somewhere on the spectrum - or both - I know that I absolutely do not want to join a shouty club or "community" or have an autistic "identity" and announce it everywhere.

Like you I function OK, and I have my life set up in a way that works for me (self-employed and home-based) so if I was officially diagnosed - or not - it would be interesting info for me rather than life-changing.

I do notice that so many of the people in my field of work who announce on social media that they are autistic, seem to have a strong line in social interaction, organising social things, using social media and their supposed autism in canny ways to their own advantage, having no difficulties being on screen/having cameras pointed at them, attending events etc. and generally being incredibly out there, socially engaged and vocal. Now of course I know autistic people are not all the same and shouldn't be stereotyped, but I am sometimes left feeling a bit about it all.

Tinseltosser , I completely agree with you .

Itisbetter
Late diagnosed people who can "pass" (in small doses) as NT or talk for themselves can still face significant difficulties. For a start, it's no use being able to speak for yourself if no-one listens, or cares, or even understands/has any frame of reference for what you're saying. You're just dismissed, with an added layer of being seen as a troublemaker because the reason you're struggling isn't obvious. I've been through hell at the hands of professionals (repeatedly attempting to get help from mental health system), police and court systems, homelessness (and services turning their back on me), being extremely vulnerable to predatory men and so on. And systems that all worked against me because I didn't fit their ideas of how human beings work. I was seen as a nuisance to be ignored and punished whilst desperately vulnerable and suicidal.
Forgive me for bringing this up, as I am unexpectedly having flashbacks to this earlier period of my life today. (And though I can write here, my voice is nothing in the wider world as my experiences are simply not believed or so far out of most people's frame of reference, as well as extremely difficult to articulate in person.)

If NAS aren’t actively protecting autistics and their families from the exploitation of sexually suspect messages/information, and they aren’t advocating for the least able, who ARE they for?

They are not advocating for people like me, either. Basically not for anyone who actually has any significant problems caused by their autism. It's all yay! and simplistic solutions. And most oddly, all seems to be for people who have significant support and cheerleaders around them - I don't mean those who absolutely require high level support, it's more... those who have their lives and beliefs facilitated to such a degree that they don't appear to have the everyday struggles or experiences that are common with (or even core to) autism. Like being surrounded by cheerleaders rather than socially isolated. Or working out how to pay the bills. It is strikingly similar to the "most marginalised" argument of TRAs who clearly aren't marginalised as they have this tribe and sort of untouchable status. I suppose in a way this could happen with any issue/group - the ones who can get others on side are the ones who have influence. So by it's very nature you can't be marginalised AND have your voice heard. (Argh, I seem to have strayed into philosophy!)

I think there's also similarities in terms of the resulting glossing-over of real difficulties and totally skewing the focus. With gender dysphoria there is real distress and difficulty, but that's no longer core or even necessary to being trans, according to TRAs, so we're not looking at what this is all about or how to help with it - for example exploring why increasing numbers of teen girls are deeply distressed at their own bodies and gender roles - we're being told by a completely different section of trans people that it's all just fabulous. And like the positive focus on aspects of autism (THAT DO NOT APPLY TO ALL) there is a grain of truth in it - it's great that Bob can be free to wear the frocks he's always liked (even if we don't think that makes him a woman) and it's great to appreciate aspects of autism such as being honest or the high affective empathy and sensitivity often found in autistic women. But you can't focus on these things at the expense of everything else or you completely distort the bigger picture and fail to even understand the real issues, let alone actually help people.