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

[ByGrabtharsHammarWhatASaving]

Might be a good chance for anyone here who has or works with children with ASD to raise concerns about the NAS, the links between ASD and GID, and concerns in general about the effect of trans teaching in schools on children with ASD.

My point is there's no way someone with his needs would be described as having "level 1 autism" aka HFA or Aspegers.
Just to be clear these aren’t equivalent terms. There are HFA who do not fit the Asperger criteria.

Why does the term high functioning autism hold such currency when it's no use at all?

Why indeed. Nowhere in our assessment is there anything about IQ levels so I’m not sure why it keeps being repeated here as part of diagnosis.

I think there’s a lot of misunderstanding around terminology. Low functioning, is more commonly described as “having a learning disability” now and High functioning as “no learning disability”. (See link)

www.datadictionary.nhs.uk/data_dictionary/nhs_business_definitions/l/learning_disability_de.asp?shownav=1

Am I supposed to apologise for thinking that resources are limited and that assessment is not what we should be prioritising? - @Itwouldtakemuchmorethanthis

ANY assessments? So how would we diagnose children in order to get them these supports?

Assessment IS a priority! LOTS of place DO NOT offer help if there is no diagnosis, without assessment there is NO diagnosis.

If you think this, how on earth do you suggest we access (what little) vital help there is for our children?

I can imagine prioritising MH in the autistic community, or prioritising speedy assessment - @Itwouldtakemuchmorethanthis

Contradictory to what you posted previously, which is it?

differentnameforthis

Exactly. You have found what I have, that this poster contradicts and goes in circles constantly.

Diagnosis is a first step and is hard to get appointments for, for anyone, let alone adults. It has to be prioritised! Sheer stupidity to suggest otherwise.

It’s not at all contradictory to say I can imagine other people having different priorities to mine.

I wasn’t talking about about assessment for anyone, but I’m growing tired of reiterating the same point. As it happens I think resources are better spent on providing support than assessment and that often it seems parents are lead to believe that assessment will solve issues and magic up the support their child needs.

You can access support without dx. It’s the same process because support is dependent on need. Sadly in many places with or without dx it can be hard to get what’s needed.

You can access support without dx. It’s the same process because support is dependent on need.

You’ve been told many times this is not the case. You can’t get support specific to autism without an autism diagnosis.

Assessment is crucial. Any suggestion it is not is absurd.

Stating something repeatedly doesn’t make it true Jessica. It is possible to get quite extensive support without diagnosis. Anyone who is telling you it is impossible is wrong or trying to avoid giving it to you.

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.

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

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.

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

;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?

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?

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.

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....

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.

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.

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.

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?

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.

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?

I don’t know what zero sum attitude means?

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.

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.