Review of the National Autism Strategy ‘Think Autism': call for evidence

It is the latter group that concerns me most. I understand some people are more concerned with the former, and some more concerned with undiagnosed adults.

Now here’s where you are going wrong. Because what started as a conversation within this thread about how so many were going undiagnosed, girls and adults, and that to remedy that so we didn’t get these self ID types who do it as a fad, was to advocate for more resources for those struggling to get an assessment, YOU have turned into: some people are more concerned with, rather than as well as the groups you are concerned with. I’ve said it to you many times, others have said it: WE CAN ADVOCATE FOR BOTH. BOTH need help. That you think giving more help to those currently getting NONE is talking over those you consider more vulnerable, is a real issue for others on this thread.

It is you that prioritises only one group and continues to dismiss the needs of others who present differently to those you consider in greater need.

You have no idea how we communicate in meatspace. You make huge assumptions. It's a barrier to communication for you.
Equally you don’t know anything about me and have made some huge assumptions.

Ok so if you don’t like HF/LF descriptors do you feel that’s because of the “functioning” being misused to basically mean how well you manage in a nt world, or is it because you don’t think IQ should be mentioned when discussing autism?
Do you have the same dislike of Learning disabled/non earning disability?

itwouldtake, if you read comments addressed to you during this thread, including quotes of things you've said, that will sum up the attitude I'm talking about.
You're putting people's backs up. Autistic people.
You have no idea how we communicate in meatspace. You make huge assumptions. It's a barrier to communication for you.

No I was trying to reassure you that you could say what you like. If you’ve been on MN that long then you know all that so there was no need for me to say it.

Sorry, of course I can google your terminology but it will take quite a while, and generally people just try to be understood so conversation can flow.

Which attitude to autism do you dislike?

Gee thanks.
I've been on here 14 years so am familiar.

Are you saying all the autistic people I know who have been kicked out of groups should just come on here?
Because the other side of the coin is that attitudes like yours aren't a problem here either.

Nb you are unlikely to get kicked out of Mumsnet as long as you follow the guidelines. Certainly not for expressing your feelings about your own experience.

Why not have a google if some terms are tricky - you'll find some objective information and your attitudes towards autistic people won't be a barrier to self-education.

It's unhelpful to use language about functioning and I find I can't engage with it.
It's incredibly distressing to see it used in an unproblematised way.

Third sector = NGOs/voluntary sector.

I don’t know what zero sum attitude means?

I’m sorry can you explain what “third sector means”? I think I understand that you feel that if LFA feel sidelined in support groups they should ask for a new space to be set up for them?

What I see, in practice, in my life, is actually autistic people getting kicked out of groups online and offline for getting into these types of conversations with allistic family members of autistic people.
So to me that's the kind of marginalisation and isolation I worry about.

Why the false dichotomy? Why the zero sum attitude?

All autistic people will struggle to communicate with allistic people. And vice versa. Why pretend it's easy for some of us?

Jessica wrote The space should be for everyone with autism. Not just the few.
And yet when I tell you that
What I SEE happening is the voice of the most vulnerable being crowded out by louder voices.
You cannot see that that is exactly what you are doing here.

As I’ve stated throughout I do not deny the very real challenges autistics face. Those that can talk eloquently and do not have learning disabilities and those that cannot and do not. It is the latter group that concerns me most. I understand some people are more concerned with the former, and some more concerned with undiagnosed adults.

What's sad to me is the zero sum attitude to services, support etc.
If there's evidence of increased need (eg through diagnosis or even self-diagnosis in some cases) that can demonstrate a need for increased funding.
I've rarely seen increased demand be a problem for support groups etc. If you evidence it to funders, there's more money for activities.

I work in the 3rd sector. I'm not making this up.
If your organisation is accountable and reliable, there is likely to be money for it to offer activities to those who need it.

It's impossible for 3rd sector projects to provide diagnosis however, so it makes sense for this to be a policy priority for the NHS who can provide it.

Are you suggesting I am? I am saying you don’t know what you’re talking about and are ignoring the experience of several posters who are telling you they needed a diagnosis- and wanted one too. It is particularly helpful to children who may feel anxiety at not knowing why they are different.

One heavy burden for autistic people to carry is ‘camouflaging‘

Yes indeed. The effects of this are hard to even say in words but it can and is extreme what this does to a person. But hey, they’re just taking from others who need it more....

That’s correct SuperLoud it was suggested that articulate late to diagnose autistics were taking from those more in need and more ‘visibly disabled’. Below ‘ most vulnerable’. I’m not sure why it is assumed those that are adult undiagnosed or female undiagnosed are less vulnerable just because they may be verbal. It seems the posters personal experiences have informed their opinion about a huge group of people they don’t even know. Space they’re taking? The space should be for everyone with autism. Not just the few.

What I SEE happening is the voice of the most vulnerable being crowded out by louder voices. Any suggestion that safe spaces and support have been invaded and appropriated, is met with similar responses to upthread. I UNDERSTAND how hard it is for these individuals. They are extremely good at sending that message. What isn’t good is the idea that because they have needs and difficulties that they don’t need to hear that they are marginalising a uniquely vulnerable group from often the ONLY help they have. I get it’s not nice to hear. I don’t get ignoring the needs of, and heckling down of, the people who are in the space you are taking.

Itwouldtake it is fucking true for the many people on this thread. Are you suggesting we’re making it up?! Ffs.
Are you suggesting I am?

;One heavy burden for autistic people to carry is ‘camouflaging‘ — the attempt to hide their autism traits to fit in. Adults with autism who camouflage are eight times as likely to harm themselves as those who don’t, Cassidy’s team has found. Although many autistic adults do camouflage, the phenomenon is thought to be particularly common, and damaging, among women on the spectrum.

The effort involved in camouflaging contributes to anxiety and depression, compounding the risk of suicide.'

www.spectrumnews.org/features/deep-dive/hidden-danger-suicide-autism/

There is no easier/harder nor better/worse autism.
Autism makes it hard to live in a world of neurotypical people. Because they don't empathise with us nor communicate with us in a way that is effective, among other reasons.

Why bother when you can dismiss most of us, eh?

I rather thought it was suggested that we didn't deserve it anyway.

Some schools are more accommodating but effectively this is given on grace, and can't be expected as policy.

Exactly. I am literally talking about policies and what I’ve had sent to me and told to me.

Itwouldtake it is fucking true for the many people on this thread. Are you suggesting we’re making it up?! Ffs.

Oh - I couldn't get a bus pass without a diagnosis.

I couldn't get support at my university without my diagnosis letter.
My son can't get it at school as he has no diagnosis.
My workplace wouldn't give me accommodations without a diagnosis.
Some schools are more accommodating but effectively this is given on grace, and can't be expected as policy.