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

do you know any autistics who can’t communicate verbally?

Yes, including one who was non verbal until 7. Why?

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?

I don't like the HF/LF descriptors because they are reductive and tell you nothing about the complexity of a person's needs. I don't have a problem with IQ being mentioned when discussing autism, what I have a problem with is the assumption that if a person has a high IQ and is thus defined as "high functioning" then the perception is they need no support. It's completely absurd that having a high IQ can end up in a person being labelled as "high functioning" despite being unable to live independently or take care of themselves.
Low and high functioning perpuate the view that the spectrum runs from point a to b, with the most severely autistic at one end and the "mildly autistic high functioning ones" at the other end. I don't need to explain why that's so unhelpful.

They are terms that are completely useless and aren't helpful. It's far easier and more logical to simply say a person is autistic, has learning disabilites and is also non-verbal. Rather than simply saying they are low functioning (also I find the terms somewhat dehumanising) and letting people make their own assumptions about what that means. And when it comes to so called high functioning autism people will then just blindly assume that a person needs no help whatsoever and is basically just a bit quirky. To be honest I find the term high functioning really insulting. Especially when it's used about a person (like myself) who despite having a normal IQ can't actually function in the real world.

I have no idea what your experience of autism is, but my experience is interacting with you has basically confirmed my impression that autistics with LD(LFA) are not benefiting in any way from the change in diagnostic criteria and there is no real intent to consider their needs.

This I can agree with you about, but actually I don't think the change in the criteria helps anyone, I don't think it helps severely autistic people with learning disabilites and I don't think it helps anyone else on the spectrum either. I think removing Aspergers from the DSM was a big mistake.

I think this is a really immediate threat to children with ASD

I think you’re right.

Jessica do you know any autistics who can’t communicate verbally?

Voice0fReason really good link, thanks! We got sent that with our DD diagnosis.

This is an excellent explanation of why functioning labels are useless

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

I imagine we were discussing what concerned us individually about the current situation, given the thread is about “Think Autism”. I imagine OP wanted to talk about the large number of autistic children who feel they want to “transition” and why that is and people’s concerns. What I fail to understand is your upset at my concerns being different to yours, your insistence that only diagnosis can bring support, and your endless insistence that I know nothing about autism.

You responded to a discussion being had! About advocating for extra resources for adult diagnosis. We were discussing that and you responded to it and continued to debate endlessly, change your position, deny previous positions, insult several posters and completely derail the thread. You did that. For the last flipping time, NOBODY is telling you what to be concerned about. YOU were responding to our concerns and said it was taking away from those who needed resources more. I keep repeating this and you keep responding like the conversation never happened. What the actual fuck. You’re ignoring what people are in plain English telling you they’re upset about and you’re responding with a completely different invented reason. In an obvious attempt to deflect from the fact you’ve insulted lots of people on the thread.

I imagine we were discussing what concerned us individually about the current situation, given the thread is about “Think Autism”. I imagine OP wanted to talk about the large number of autistic children who feel they want to “transition” and why that is and people’s concerns. What I fail to understand is your upset at my concerns being different to yours, your insistence that only diagnosis can bring support, and your endless insistence that I know nothing about autism. I have no idea what your experience of autism is, but my experience is interacting with you has basically confirmed my impression that autistics with LD(LFA) are not benefiting in any way from the change in diagnostic criteria and there is no real intent to consider their needs.

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

Autistics who can’t communicate verbally obviously DO understand why their support workers need to know if they have a LD or not and what the impact of them not knowing might be.

Yes, again, only with a diagnosis.

So you don’t know much about it, but this entire time we’ve been talking about the undiagnosed adults in particular and you’ve continued to repeatedly assert that you didn’t need a diagnosis to access support and resources.

As I said, that required a diagnosis.
And awareness of how autism affects people.

At work I think OT and HR can help with accommodations. I don’t know much about it, because obviously people share as much as they’re comfortable with, but I know a couple of adult women who have taken that route.

It is so easy, based on what I’ve just read and the way it’s worded, for schools and local authority’s to still limit or avoid providing help, particularly if the child does well academically. It’s also very easy to delay it, as ours did, with endless meetings ( which often focus on ‘what’s going on at home’ rather than what support is at school ) to try and determine ‘ what’s wrong’. CAMHS is known to be completely overburdened so their resources, including guidance for schools, goes to diagnosed children first, as you’d expect. With all those who need it gaining an assessment sooner and the predicted outcome being more diagnosed autistic people, then the LA’s have figures to base their budgets and proposals on.

But wait one moment... did you forget the discussion started and indeed continued talking about undiagnosed adults in particular. What provision is there for adults without a diagnosis to get autism specific support, within their community or at work?

I'm in Scotland, that doesn't apply.

You could read something like this

www.ipsea.org.uk/faqs/what-does-sen-support-in-school-mean

There are no rules.

Why can't you understand this?

There are laws and there are local authority policies.

Neither cover the situation you describe.

Can you link me to these rules. What rules? Who created them? Who has to follow them?

And so we start again. I have NOT denied anyone else’s experience, what I did was say this statement of fact is not correct, this is how it is supposed to work and definitely has worked because I have witnessed it.

The RULES are the same everywhere. They are not universally followed.

Did I say someone was lying?!. I don’t think I did but unless they were lying about me how would I know?

Or do you mean saying it’s not true that you need dx before x,y or z ? Because my assumption was they didn’t understand or had been misinformed not they were telling a deliberate falsehood.

You assume (and indeed insist) that that is the case universally, which just isn't true.

It's great that that support was available for your DC.

But your continued insistence that it's the same everywhere is really getting on my nerves.

Because you've been told, numerous times, by people who have lived it, that it isn't.

And you keep telling us we're wrong or lying or mistaken.

Fucking stop it.

Again, your experience, which nobody has denied. Stop denying all the people here saying it’s not that way for others. You got lucky.

I said lots of support is available without dx. I didn’t say all.

Off the top of my head we had, 1:1 Ta, modified start and end of school day, CIT, EP, OT, SALT, desk in a safe space, support with toileting, modified curriculum, EHCP (though dx arrived very soon afterwards), swimming teacher support, writing slope, wobble cushion, footrest, pengrips, community dentist... not all of these came without pushing.

I'm Lanarkshire and have got all 3 of my children through the system of DX, support and adjustments put in place in each stage of their lives. BECAUSE they are diagnosed. Support was not available before that otherwise any twat could decide their child "needed" support and use up valuable resources.