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.

and ask for what they need without being told they’re taking from others.
Even if they are?

fighting with others who also need help is not the way to go
I’m not fighting with you, I’m stating that I won’t be campaigning for adult diagnosis to be more readily available/better funded when I know how pitifully little is available to those more severely disabled by their autism.

I’m not fighting with you, I’m stating that I won’t be campaigning for adult diagnosis to be more readily available/better funded when I know how pitifully little is available to those more severely disabled by their autism

Who here has suggested you should do anything? Nobody. You’re rambling on about something nobody asked of you. Nobody here wants to take anything from your precious child ok, we want INCREASED support and care for others who need it just as much. You’re the kind of autism parent everybody talks about.

I doubt I’m the kind of parent anyone notices at all. If you’re not interested in my posts perhaps just read on? You’re rambling on about something nobody asked of you. Nobody here wants to take anything from your precious child ok, I’m responding to something someone posted and replying to responses to my posts (as are you?).

Resources being redistributed from one group to another is the inevitable result of grouping everyone together. In much the same way that many lesbians feel hard done by despite huge sums going to LGBT.

Oh I see, @Thingybob, you think that because on a day to day basis, when she is anywhere else but at home, with ME my daughter MASKING her autism means she isn't as autistic as your neighbour?

"High functioning" as a label for autism needs to die! My daughter is only functioning until she isn't, and has her own set of challenges EACH and EVERY day that people fail to see because of those two words that diminish her struggles.

This is a case in point where you, @Thingybob believe that my daughter is not as in need of assistance as your neighbour, because you have been conditioned to see autism as something VISIBLE at all times, and not something that is masked to a painful extent until the person feels safe enough to show the true them.

You have fallen hook line an sinker for the myth that it's only autism if it's on display 24/7.

You are wrong.

"High functioning" as a label for autism needs to die! My daughter is only functioning until she isn't, and has her own set of challenges EACH and EVERY day that people fail to see because of those two words that diminish her struggles.

This ^ for us too, and I’ve seen it repeated so often by adults and parents of girls it really is common.

This is another example of how badly invisible illness or conditions are treated and supported, and that’s part of the reason so many so-called high functioning self harm and have suicidal thoughts. Others think their day to day struggles mean nothing because they can physically move around and attempt normal activities, despite the devastating impact doing so has on them internally. I am so tired of this misunderstanding or lack of care for everyone on the spectrum.

@Itwouldtakemuchmorethanthis - What I SEE happening is the voice of the most vulnerable being crowded out by louder voices ... 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

This has happened on this very thread against "HF" autistic children. It goes both ways. There have been people shouting down the experiences of "HF" autistic children, implying their needs are not as great as those who are severe.

And unlike you I will welcome support for adults who feel the need to explore a diagnosis. Because I don't think that I have he onus on autism, or that it only affects my child, I see adult friends struggling a lot because they have not been diagnosed, and I believe funding should be available to all. Not just children, not just what you deem as "severe" cases.

Self ID autism annoys me immensely.

I wasn’t diagnosed until I was 30. Before that, I described myself as ‘self suspecting’ or awaiting assessment. Not autistic. You don’t diagnose your own brain development, for very good reasons.

I guess this makes me autistic truscum, but shrug been called worse. FWIW I know several self ID ‘autistic’ people IRL; none of them display typically autistic traits but do like to play the autism card a lot. If this is you, please stop it, it harms us.

High functioning means 70+ IQ and is nothing to do with how severely your autism impacts your daily life nor how easily you “pass for nt”.

No I believe both groups need services and support but in totally different ways.

There are some ignorant people on this thread. My daughter is your so called 'high functioning', in the middle of her As levels in which she will probably get all top grades. Last night the anxiety and mental and sensory exhaustion got so much that she started to smash all the dishes in the kitchen, wrecked every item of furniture in her room including several holes in the walls and repeated slammed her head against the wall. Today, she has left for school with a smile. But she is okay and doesn't deserve any support because you don't see it?

Nobody has said high functioning autistics don’t need support.

@Gertygypsey
Hope you are both ok! My dd is 10 and bangs her head on walls when she meltsdown. It's heartbreaking, isn't it?

It's hard enough trying to convince the medical profession that our "HF" children need help, let alone other parents, hey?

@Itwouldtakemuchmorethanthis

Nobody has said high functioning autistics don’t need support

It has been greatly implied with such lines as

"ASD has already become such a huge umbrella term that it has become almost meaningless"

“Greatly impacted”? "

Among others. By diminishing what those called "high functioning" live with, and attributing such remarks to them, you are saying they are not as important as those who as more visibly affected. That is what you are writing reads as, if you don't mean that, then perhaps be a bit more careful with what you are writing, because I am sick of people thinking that my dd doesn't struggle, therefore doesn't need some intervention.

Theres a vast difference between saying that some autistics are more severely impacted by their autism than others, and saying HFA don’t need support. HFA can have MORE support needs than each other and than LFA.

The original discussion was self IDing autistics and those diagnosed in early childhood. I’d guess they have enormously different needs.

itwould the original post wasn't about self ID, that was raised a few posts in, followed by the comment 'fuck off with the self id' or words to that effect.

'Self identifies as autistic'..really?! Jesus..I mean, I know how long it can take to get a diagnosis, but there seems to be a LOT of people who 'self identify' and honestly, it seems like its attention seeking in the majority of cases.

Nobody has said high functioning autistics don’t need support.

You have heavily implied this Itwouldtake by repeatedly saying they take resources from those like your child who you’ve said needs help more and you’ve questioned how ‘greatly impacted’ their life actually is, in response to me. You’ve also said you wouldn’t advocate for them to have support and care. So I think actually you are saying precisely that: HF don’t need resources and shouldn’t be asking for help as it takes away from your child. It’s what you’ve literally said.

Gertygypsey just wanted to say hi and that I understand, similar position here with an A level DD and similar presentations.

@PinkSpiderplant sorry yes I know I think it stems from the use of self ID in the survey?

Can we agree that ‘high functioning’ isn’t a particularly helpful term for a spectrum condition where a person of average IQ can have significant support needs and generally struggle to ‘function’ or achieve their potential?

@JessicaWakefieldSV no I think you’ve extrapolated. I also think you’ve blurred the meaning of HF and seem to think it means “less severely impacted”. That’s why I posted the definition of HF up thread.
I don’t think I said my son was LF (in fact I’m sure I didn’t). I said I wouldn’t campaign for more funding to help adults who self ID as autistic to gain clarity through dx, as a solution to the issue of less able more severely impacted autistics voices being drowned and support groups being flooded.

No. We were discussing advocating for more resources to deal with adults without a diagnosis, to make referrals and assessments easier to obtain and then those adults would have the diagnosis ( or not ). You said:

so basically focus resources (time/money) on the able articulate possibly autistic adults to make sure they are well catered for and then perhaps anything that you have left can be used for the autistics. Why?

And you continued after my reply to question what ‘severely affected’ looks like and that these people waiting for or asking for a diagnosis are taking away resources from people like your child. You are again implying that those without a diagnosis are less severely affected, not that it should matter as everyone should get what they need regardless. You’ve repeatedly said you would not help nor think it fair, for adults or girls struggling to get referrals because it would take away from others you think deserve the help more. I’m not sure how you can pretend you haven’t said what you have written here.