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!

[WarriorN]

This is the sort of thing the NAS should be publishing.

Very moving account from a mother:

pitt.substack.com/p/to-my-daughters-therapist-you-were

[helenshair]

I'm autistic (diagnosed with Aspergers) and am in a support group where a few members are self-diagnosed, and I just wanted to put another perspective to those suggesting that self-diagnosis is just people identifying with something they see as a fashionably quirky.

I don't think anyone's really said (apologies if I'm wrong) how incredibly difficult it is to get an autism assessment in the UK. First step is your GP. Many refuse to refer e.g. I know of women who have been refused 'because you have friends/can make eye contact/have a job/went to university." There is a staggering amount of ignorance about autism, paritcularly autistic women, in the NHS. If you do manage to get a referral you might be looking at a wait of up to 3 or 4 years in some areas. Then I've heard of women who've got to the stage of an initial telephone consulation and been refused a full assessment for various money saving reasons similar to above but often with no reference to the actual diagnostic criteria. Some will go private but the cost can be over £2000, and some GPs will then refuse to put a private diagnosis on your NHS records, even if the same psych has a contract to do exactly the same assessments for the NHS.

So my experience of people I've met who are 'self-diagnosed' is they are usually people who have spent their lives suffering mental health crises and not understanding why they are such misfits. Finally they read about autism or someone suggests it to them, they read everything they can lay their hands on, realise this finally explains their whole life, but then come up against the brick wall of the NHS and probably can't afford to go private. That's why many autism groups accept the validity of self-diagnosis, not because we want more people to join our fashionable club!

[Tibtom]

helenshair whilst I think that is recognised, one if the issues with self-diagnosis is not that they individual doesn't have real 'symptoms' (though it may sometimes be the case) but rather that they don't have ASD. Recently there was a self-diagnosed 'autism' blogger with a reasonable following who got diagnosed - with ADHD. ADHD diagnosis fitted her well and had caused her difficulties throughout her life. Like autism it also hard to get diagnosed as an adult etc. But it is not autism. Ditto a friend who is a psychiatrist says it is not uncommon for those she diagnoses with Borderline Personality Disorder to arrive thinking they are autistic and it can take some explaining to help them adjust to their actual diagnosis.

[likearoomwithoutaroof]

Mine is exactly the same.

Day to day, functions well. Masks well, is coping in school (with full time support via an EHCP).

Meltdown time is another matter. She is completely out of control, lacking capacity. She doesn't lose her speech but she slips into being repetitive, scripted - she can't 'speak' in independently constructed sentences.

So when people see my seemingly 'normal' child who is 'just a bit anxious/shy' etc etc etc I think - yes, she's so 'normal' that she qualifies for mid-rate DLA and in her registered carer as well as her mum!

She is much like I was as a child.

@helenshair That is a fair point, but I'm going through the diagnosis process myself right now. It's not that bad everywhere. I emailed my GP and told him I'd like an assessment and why. He sent me some forms to complete which I did and he rang me, chatted through the results and agreed to refer me. Referral sent, I received an email from the assessment centre a few days later with loads of forms to complete. Did them, a few days later they told me I qualified for a full assessment and that the wait was 6-9 months. I'm waiting for the assessment now. I contacted my GP in June, initially. I'm in the south.

[likearoomwithoutaroof]

Sorry that was for @OhDear2200

[helenshair]

@likearoomwithoutaroof wow, that's fast - I've heard it varies a lot depending on where you live, and the knowledge of your GP but I don't think I've met anyone who waited less than a year. Good luck with your assessment.

@Tibtom yes I have come across that, particularly with ADHD. A lot of people who feel they don't fit in and have experienced mental health crises will look for an explanation that makes sense of who they are, and no doubt some will hit on the wrong thing. But that's not people looking to ID with a fashionable group, it's more about mentally unwell people trying to make some sense of their lives.

[Tibtom]

But that's not people looking to ID with a fashionable group, it's more about mentally unwell people trying to make some sense of their lives.

ADHD is not mentally unwell.

We were talking about hierarchies earlier and how trans may be perceived by some as preferential to autism. The same can be said for autism over BPD or narcism, or even ADHD.

[OhDear2200]

@likearoomwithoutaroof you’ve again described my situation

[LadyJaye]

I was diagnosed with Asperger's around 10 years ago, in my early 30s, and I very much resent the 'language policing' around it.

My experience (mainstream schooling, university/post-graduate, a successful career, relationship etc) bears no relation to the life of a non-verbal child with severe learning difficulties, for example: it would be wrong of me to attempt to speak on their behalf, or that of their parents, under some weird homogenised ASD 'banner'.

I continue to refer to myself as an Aspie.

[helenshair]

ADHD is not mentally unwell

I know that. I meant that people often experience mental illness from the stress of coping with undiagnosed neurodevelopmental conditions. For me it was a huge relief to realise I was autistic. I'd had breakdowns, depression and anxiety for years and not understood myself. I still struggle with life, and have anxiety, but it's easier now I know why. I have heard similar from people with ADHD. But maybe that desperate search for answers means that some people would rather find any answer than wait for the right one? What I was trying to say is that there's an underlying desperation behind those incorrect self-diagnoses, not just a whim.

[Sickoffamilydrama]

So glad to see this conversation is still going.

I find the waste of ££, time and energy that charities must spend on pandering to gender ideology so frustrating.

When that could be invested in helping adults & consistent with autism and their families.

I didn't know the story about why Asperger and autism merged and it's interesting the effect it has had. My DD right on the bottom functioning/IQ wise at 80 and she certainly needs a different kind of support at school to a child who is "higher up" the scale. Lumping everyone together won't help with this.

[GCAutist]

My heart sinks when I see posts like this pop up in places I like. Thanks the the autistic people participating and speaking up.

There are a lot of problems with the autistic community (for want of a better word) and there are a lot of people adopting the diagnosis without even wanting to seek professional diagnosis (which devalues the do you know how hard it is to get a diagnosis argument). I’ve left most autism groups because they’re absolutely bonkers for the gender identity crap. They even came up with autigender which makes sense on the face of it, where autism affects your experience of gender but that’s not a gender that’s just life as an autistic person. Autism affects every element of life, not always negatively either. What worries me is that growing up gender expression or identity was something every autistic I knew didn’t give a crap about. Now you’re attacked as transphobic if you don’t speak the right way or called a nazi if your diagnosis is the unacceptable one.

I used to be quite proud of how I’d survived in spite of being autistic, now I tell no one and I’m embarrassed by the diagnosis as it’s so bloody fashionable right now and everyone seems to be adopting it to excuse inexcusable behaviours

[5zeds]

I don’t think it’s so much that self diagnosed or those that wouldn’t have been diagnosed even ten years ago are present, I think it’s the size of their presence on social media and in support groups. By size I suppose I really mean impact. A small minority have arrived, and become the voice of autism. It’s not a thoughtful measured voice and it certainly doesn’t want to hear anything from the original participants. I’ve lost count of the times I’ve read people being told they cannot advocate for their child or speaking their behalf because someone who very obviously has no idea what more classic autism is like “knows better” because they are autistic.
It would be infuriating in any situation but if you are the ONLY way your child can have any voice at all, it’s awful. If you are also witness to a number of young people embracing and being supported gender ideology it becomes a fairly difficult place to be and frankly I doubt you’re very welcome anywhere.

[Tibtom]

Interesting, and despairing, to see response to reports today about how parent training can reduce autism diagnosis: www.bbc.co.uk/news/health-58626945
Basically parents of babies with possible autism were trained to identify their babies communication in order to be able to respond to them/interact. This was found to reduce autistic behaviours at 3 years old so fewer were diagnosed autistic at that point.

The NAS quote was "Autism is not a disease and not something that should be cured or lessened. Early intervention should be about supporting autistic people with the biggest challenges they face."

I am not quite clear if the NAS is infering that parents shouldn't learn to respond to their babies' communication as lessening their difficulties by aiding their development is a bad thing?

[theaccidentaleconomist]

@5zeds I would love to learn from a community of more measured autistic voices, especially female ones. And parents/caregivers of autistic people too. It really is a relief to know I'm not the only one who feels like this.

There is a Mumsnetters with SN board here which has Autism and ADHD related discussions but it is very quiet. I only found it by accident as I wouldn't really have thought of looking there because of the name.

[5zeds]

Basically parents of babies with possible autism were trained to identify their babies communication in order to be able to respond to them/interact. This was found to reduce autistic behaviours at 3 years old so fewer were diagnosed autistic at that point. and did that lead to better outcomes for parent or child? Is the suggestion that these children were then not autistic? Is the suggestion that later diagnosis helped them? What was the benefit and to who?

[Tibtom]

The end point of the study was just 3 years old. But is it beneficial to the child to have their parent understand and respond to their communication? I struggle to conceive of a situation where this is a poorer outcome for any child. The fact they had increased skills later on would suggest that it increased their development, or conversely that inability of a parent to pick up on their communication cues limited it. But whether it makes them happier at 37? who knows?

[5zeds]

Autistic children often develop skills in a different order to their NT peers. If morphing parenting results in them following a more NT path is that necessarily better? If it also means they don’t get diagnosed early will that be better? It’s an interesting idea but “parenting the autism out of them” is not a new idea and I think given it’s a lifelong disability it’s not a given that early masking is going to lead to better outcomes.

[ASDmum2]

My kids (late teens) read that article and were quite dismissive - their perspective was that it just teaches masking at an early age.

So yes, in some ways the child would be more socially accepted because they would have the skills to blend in. But it wouldn't actually eradicate autism and it would just put more pressure on the autistic child to conform - conformity which some autistic people just cannot (shouldn't have to?) meet.

[helenshair]

What worries me is that growing up gender expression or identity was something every autistic I knew didn’t give a crap about. Now you’re attacked as transphobic if you don’t speak the right way or called a nazi if your diagnosis is the unacceptable one

This really interests me because I was the same - I was classed as a 'tomboy' - neutral, practical clothing, played with cars and lego, played cowboys with other kids, etc, but that wasn't out of the ordinary in the 70s. If I was primary school age now I get the impression my every move would be scrutinised and probably I would probably be classed as trans. But why on earth should a child 'express' a gender and why should there be a 'correct' way to do that? It's so regressive and narrow minded. I'm still not interested in being 'feminine' and I don't really know or care what my gender identity is. Nothing I've read has explained to me what it is to 'identify as a woman' beyond biology and the way we deal with it and are treated by society because of it.

I would love to learn from a community of more measured autistic voices, especially female ones

There is a FB group called 'women with autism/aspergers UK support group'. I've found some really useful info and good support on there. It's very active so the chances are you'll find topics that interest you most days, and other stuff you'll disagree with or will be irrelevant to you, but outside my face to face group it's the most useful group I've found.

I am not quite clear if the NAS is infering that parents shouldn't learn to respond to their babies' communication as lessening their difficulties by aiding their development is a bad thing?

I think their comment was in response to news stories that seemed to be reporting this as a 'cure' because the researchers said it reduced diagnoses. Of course it's useful to find ways of helping parents to communicate more effectively with their autistic children, but it's not clear why fewer diagnoses would be a sign of success, and whether it's just delaying diagnosis for those children, which many of us have experienced as having a negative impact on our lives.

[InvisibleDragon]

I don't think the intervention was just teaching the babies to mask. It says that
"Over five months, the parents of about half of them were taught to:

• interact with their baby even if there was no eye contact
• play with them in a sensitive way that helped their development"

I don't think interacting with the babies who aren't making eye contact is teaching them to mask - more the opposite. It's helping the parents to interact with their baby in a sensitive way that meets that child's needs. A child with autism / autistic traits night initiate play with their caregiver in a subtly different way but would still enjoy playing - and will get developmental benefit from play - in the same way as neurotypical children. Teaching the parents strategies to engage with their child isn't teaching the child to mask, it's helping the child access developmentally appropriate play and learning that they might otherwise miss out on.

[5zeds]

the parents of about half of them were taught to:
- interact with their baby even if there was no eye contact
- play with them in a sensitive way that helped their development"

Well I think if the issue is poor parenting (which NOT doing the above would be) then yes you will help children who appear more autistic than they are because of insensitive of lack of appropriate interaction. They will of course still be autistic but they won’t be identified as early.

[Tibtom]

They will of course still be autistic but they won’t be identified as early.

Except that in order to access this intervention they would be flagged up at a year old - considerably younger than most.

[Tibtom]

5seds do you think teachers should be taught how autistic children learn, best ways of communicating with them and how to adapt the class environment to make it more aitism friendly? Or do you think that if teachers make adjustments and provide support in this way it risks children not having enough problems in school to get referred for diagnosis?

[5zeds]

I think I’m bored of “parenting classes” being presented as a cure for neurological differences.