Autism society

High/low functioning referred to IQ

No. I wasn’t implying that somehow being able to communicate (at least most of the time) isn't "real" autism or hugely disabling.

You are obviously high functioning because you are able to post in the manner you do on this thread. It means you have an IQ over 80 NOT you can pass for neurotypical. It has nothing to do with how well you communicate.

WarriorN 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 know a boy who appears to have a more subtle presentation of autism, also like this. Mother is incapable of critical thought (despite being not into sex stereotypes at all - how does this work?!) and lapped up the Mermaids rubbish, as did child's school. Cue child occasionally making statements about being a boy liking girl's things but this being ignored in favour of asserting "her" gender identity.
Its like seeing a ghastly car crash in slow motion.
Its important to remember that young children have the same inflexibility of thought and black and white thinking that is associated with autism. (Autism is a developmental disability, it interferes with development but doesn't necessarily prevent it. So autistic people may learn all sorts of things including complex thought, but a bit later on.)

"High-functioning" is a complete misnomer. only because you are using it completely inaccurately, but that is done so often now that as a descriptor it’s pointless. It’s a good example of how the hijacking of language reduces its helpfulness.

5zeds
"High-functioning" is a complete misnomer. Most so-called high-functioning autistics have a load of support from partners, family, or a special interest that makes them money so they can buy in help/have an easier life so it's manageable. Those of us without those things really struggle.

Its soul destroying to constantly have this "oh it's not real autism"/not severe enough to be struggling or require help. Its like if someone is sad about something and you just tell them there's people who are worse off. Doesn't help, and makes them feel shit like they've no right to be struggling.
I've been awake for an hour wondering how the hell I keep living. This is the reality of so-called high-functioning autism. And you before anyone tries to tell me to go and seek mental health help - there isn't any, as autism can exclude you from services (ie. its autism, not mental health, or they say you need specialist autism mental health services, which don't exist.)

Its ridiculous that so many different needs are swept under the same umbrella. I shouldn't be pitted against someone with severe learning disabilities who needs constant care, when support needs are being considered.

Whilst I don't think the autism activist types represent me, they at least have made autism more known about so it's slightly easier to manage because some people will at least accept if you need to do things to cope. But there is still a huge amount you have to explain to people.

Sorry one more thing- a friend recently volunteered at a local nas group and said there was an awful lot of chat about trans and non binary. It's really getting out of hand.

I'm so angry that people who claim to understand autism don't see the way trans is very closely linked to difficulties with flexibility of thought, binary thinking as well as sensory discomfort or preferences.

It's always been known that certain fabrics are either irritating or calming, and how a child with autism might be drawn to them or dislike them.

But that's apparently bigoted now and it's their true authentic self

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.

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.

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.

Yes I see what you mean lemon, thanks.

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.

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'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.

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.

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?)

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.

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.

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.

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.

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.

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.

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.

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).