Is there such a thing as a GC Autism support charity?

[plipplops]

DD has recently been diagnosed Autistic.

We're flailing and reach out for support to charities and I'm bothered by the fact that they all seem to be affiliated to Stonewall, and have the lines 'Autistic people are more likely to be gender fluid/gender questioning etc..'

Luckily she doesn't seem to be interested in such nonsense but I really want her (and us) to be able to access support without risking her mental health deteriorating further by any suggestion becoming a boy/NB might help.

Anyone know if any charities haven't been captured?

I's not my very first priority. We're in a new world, my beautiful daughter is struggling and we're trying to find ways to help and support her, not signpost her to an organisation who might put her on a path that I believe is a massive safeguarding risk.

I saw this on FB today:

AUTISTIC INERTIA
"Autistic inertia more or less is the concept that when autistic people stop doing something it’s hard to restart, and when we have started something, it’s hard to stop. Inertia can come about from stress, overload, and exhaustion."

Presumably as opposed to non-autistic inertia, which is the concept that when non-autistic people stop doing something it’s hard to restart, and when they have started something, it’s hard to stop. Inertia can come about from stress, overload, and exhaustion….

I’m actively trying to steer my DS away from any autistic ‘support’ groups, as they are so problematic and potentially harmful. Online ones are dominated by autistic older teens or adults, with fervent views of what autism is which is a presentation very different to DS - who is likely never going to be independent. I think they would also work against me as a parent.

Instead I am trying to find healthy interest groups, that are about activities like hill walking or gaming or science.

@NitroNine and @SapphireSeptember this makes me so, so angry - the functioning autistic articulate adults who actively make out they are even more severe than someone who isn’t toilet trained. They are absolutely everywhere and claim the central autism spaces. I am hopeful that there is a movement to create a ‘profound autism’ category - which is for very severe (<50 IQ) autistic people. This does not solve all issues, but at least it’s a clear recognition that no, not all autism is the same.

@SapphireSeptember does membership of that GC Autistic group show up on your FB groups? Would others be able to see you were a member (even though they wouldn't be able to see any posts)?

My understanding of FB groups is that if you run a page you can see what pages your followers follow? I'm not sure people can tell you're a member though

I used to inhabit WrongPlanet forum and just took a quick look. It is still there, looks useful as ever, lots of subforums on specific topics.
My DD was diagnosed a while back and we were told to join a group, but round here they literally fly the trans flag over the door, and as extremely manly woman I couldn't bring myself to go in.

see i think this is the way to go:
"Instead I am trying to find healthy interest groups, that are about activities like hill walking or gaming or science."

When the group's focus is anything other than autism, I feel its healthier, even for groups that are likely by their nature to attract (higher functioning) autistic people.
To be honest, it doesn't sit right in my mind that a person who needs 24/7 care gets the same label as one who can function well enough to have a professional job.
However on WrongPlanet the whole spectrum is there and there is tons of useful advice.

I’ve had to twice tick boxes when joining two autism groups recently, that I am ‘a trans ally’. Why on earth would I have to be a trans ally when the whole point of the group is about autism? One of them was for parents about schools.

It’s groupthink.

I’ve had to twice tick boxes when joining two autism groups recently, that I am ‘a trans ally’.

This is an indication of the issue - there’s an obsession with gender and trans in some circles, autism being one of them. If people aren’t also being asked to declare their support of the disabled, ethnic minorities, Christians etc. and all other groups who might be disadvantaged or have something prejudiced said about them, then it shows the preoccupation with trans and the likelihood of there being people running the group who will leap on gender nonconformity or just unhappiness of any kind, and encourage kids to consider being trans as an option. There definitely are teachers and group leaders who actively suggest it - I know people this has happened to. One friend’s dd is “NB” after teachers at school told her she could/should be. She says herself she wouldn’t have considered it otherwise. I think a lot of woke do-gooders think they are helping kids by trying to get them to consider a trans identity as a wonderful way of finding their “true self”.

I don't doubt there are statistical differences in the brains of people diagnosed with autism vs others, though it does concern me that what is considered a neurological condition is diagnosed almost exclusively by behavioural traits - is there good evidence that "autistic" behaviours always reflect similar underlying neurology? Especially as the diagnostic criteria are so broad so there isn't even that much behavioural similarity between autistic people, two people could get the same diagnosis with almost completely distinct sets of symptoms. Has there been too much of a leap in assuming these two people would have more-or-less the same neurology?

The criteria for autism is the triad of impairments:

Social communication
Social imagination
Repetitive behaviour/ special interest.

Superficially, autistics may appear diverse. There's the repetitively hand-flapping non-verbal kid who runs around the playground treating other people like inanimate objects. Then there's the non-stop talking kid who orders the other kids around and answers all the questions in higher science while doodling repetitively.

Non-stop talking is not social communication any more than mutism. Physically pushing a person and ordering a person to move can both be due to failure to imagine how the other person may react.

however, if I understand correctly, some adverse events such as trauma can result in behaviours like autism.

My take on trans-autism is it is impaired social communication - communities agree on the meaning of words; combined with impaired social imagination - autistic people can't envisage the consequences of them saying they have changed sex/gender and don't realise that people often say things they don't mean. Add in special interest that gets focussed on gender along with repetitive behaviour such as always wearing same clothes.

It is very unkind to lie to autistic people - and I say that knowing how difficult it can be to face the obsessive wrath of an autistic person when you say something they disagree with. Autistic people need firm boundaries.

Yes there are shared aspects to ASD but in my experience working with, and having family members with ASD, they are still individuals who present differently. I like to get to know them as the people they are rather than focusing on what they can't do. I mean we all have flaws, even NT people.

The criteria for autism is the triad of impairments:

This is outdated. The current diagnostic criteria (DSM 5/ICD 11):

1. Persistent deficits in initiating and sustaining social communication and reciprocal social interactions that are outside the expected range of typical functioning given the individual’s age and level of intellectual development.
2. Persistent restricted, repetitive, and inflexible patterns of behaviour, interests, or activities that are clearly atypical or excessive for the individual’s age and sociocultural context.
3. The onset of the disorder occurs during the developmental period.

@SingleMum11 Agree with that. I can't even comprehend how these adults think they're worse off than profoundly autistic people who really struggle. But they're not advocating for those people who can't speak up for themselves.

@Hicc I'm not sure. I've never had any issues from being in these groups from people on my friends list who aren't GC.

Yes I was actually pretty appalled that I was asked to agree that I was a ‘trans ally’ - there was no other tick box asked for. These were support groups for parents of autistic children, and it is exclusionary to gatekeep these to only a certain set of thinking. I mean anyone could have any views, and I would happily tick a box to say that I would agree to be respectful of all people incl race/religion/sexuality etc. But a trans ally is not about respect, it’s about proactively upholding a belief, it felt like being asked to only if I was Christian.

@SapphireSeptember what I find shocking is that many autistic adults feel so confident about saying that their autism is just as, if not more ‘severe’ than someone with profound autism. How did it get to this, where a grown adult can be so confidently vocal? With zero compassion or awareness that this demeans and belittles the profoundly more severe disabling experience of those who cannot make their own lunch or speak?

I think it reflects an inability to imagine the experience of others. Many young people struggle with this a little right up into their 20s, but in autistic adults it seems that it can often last longer and be more impenetrable.

I have a frind who was very involved in some of these groups, quite high functioning, and had a daughter who was also autistic but able to function in school and so forth, though had more struggles than her mum.

Anyway, I had this conversation with her about the fact that many parents of profoundly autistic kids had real issues with some of the things going on in this group, and she just couldn't seem to wrap her head around the daily reality of these kids lives. She was so sure their internal life must be similar to her own and that when they grew up they would resent the way their parents treated them, and have a positive attitude to their autism. These were kids who would as teens smear menstrual blood on walls or walk down the middle of a busy road without any apparent awareness of their danger.

It was frustrating and also felt a little uncanny talking to her about it.

It's quite a significant leap, like assuming blindness always reflects the same underlying problem. My understanding is that these kinds of behavioural groupings without an understanding of the underlying causes are always very fraught, so far as considering that they are one condition.

@TempestTost that is very true. I was talking to an autistic friend recently, and whilst talking briefly about my DS I mentioned that he was still having trouble with motor skills, can’t tie his shoelace or play any kind of sports.

She was completely, and utterly confused. She said why can’t he use a knife and fork? What’s wrong? I said, this is incredibly common in autistic kids. It’s part of his autism. Honestly she just didn’t know how to react.

Whereas if I’m in my parents group, no-one bats an eyelid. We’ve all been going to OTs for our kids since they were 3 or 4 years old, to help. This isn’t DCD or dyspraxia which just happened to co-occur. I could go on, toileting, pica, bolting, screaming, having to control the doors. If I told my parents group - nods and acceptance. If I told any of my late diagnosed friends or those with late teens, complete and utter incredulity and lack of comprehension.

And sadly… zero interest.

A while ago I saw a lecture about a cohort study - individuals who were ‘neurodiverse’ but had a range of diagnoses; autism, DCD, ADHD etc. They had done brain imaging studies and found no pattern distinguishing these different diagnosis. It was a webinar and a load of us were asking ‘does that mean the diagnostic groups (eg ‘autism’) are wrong? Sadly they ignored all those questions. They, and other studies, had however found groups - just groups that did not correspond with the current set of diagnoses.

I am convinced that ‘autism’ is not a single diagnoses but a set of similar symptoms belonging to a range of currently unrecognised conditions, of which the symptoms of DCD, ADHD etc are also part. People don’t actually have half a dozen comorbid conditions, they have one condition. It is a bit like having organisations/diagnoses/activists for TATT (Tired All The Time) rather than hypothyroidism, anaemia, depression, sleep apnoea, COPD, cancer…. Of course if the TATT organisation is well funded and a group of individuals are given a loud voice and lobbying power then those individuals won’t take kindly to being told ‘you have anaemia and need to take iron tablets and don’t need to have the same resources invested in you as those with COPD’.

Oh I think I might have Tired All the Time. I could stand a well funded advocacy group!

I think I was in the same lecture! Really interesting. As Temple Grandin said, it’s all in the specifics…
I think most parents of profoundly autistic kids could benefit from joining a TATT group… off to see if I can join… if I can muster the energy!

Autistic people feel like we are "wrong" in the world and gender dysphoria is a high-profile type of "wrong feeling" right now. It's easy to seize on the first explanation that looks sensible, even if it's not. This is how all the world's religions came about: [thing we cannot explain] must be caused by the gods.

Diagnosed autistic woman here.

Autistic women are three times more likely to be sexually assaulted than their neurotypical counterparts. A large part of this is because we are inherently vulnerable. We struggle to understand other people's intentions and fail to recognise threats and red flag behaviours. We struggle to recognise when our own behaviour is likely to be misinterpreted. We are often as children subjected to punishments and training that deter our natural behaviours, such as stimming, and are forced to endure continuous discomfort and pain, such as bright lights and uncomfortable clothes. We get used to being in distress and hiding it and not being allowed to leave or make ourselves more comfortable, so we don't leave when a sexual assailant makes us distressed.

The OP, having seen the safeguarding trainwrecks that are GIDS and Mermaids, is absolutely correct to demand that her vulnerable daughter be safeguarded. Her daughter is at three times the risk of a neurotypical girl.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9087551/

By contrast, around three in ten women are victims of sexual violence.