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

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.

@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.

"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.

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.

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.

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?).

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.

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.

Prawnofthepatriarchy Yes, it is a time of greater and increasing awareness of the real extent of autism in everyday life and I’m personally really pleased this is beginning to happen. I try and listen as much as possible. As yet strategies being taught to my DD haven’t helped an enormous amount, but she at least isn’t alone in her head wondering what’s wrong with her. For her the sensory issues are very difficult and exhausting, as yet not much has helped alleviate that and the frequent panic attacks are an ongoing issue. We’ve not been given much help with that unfortunately.

I don’t need to ask for a place at this table or a voice, it’s mine.

Indeed. Also others, especially those who have autism themselves and are not just parents of, also have a seat at the table and can and should be allowed to advocate for themselves and ask for what they need without being told they’re taking from others. The issue is insufficient support and care, it needs extending and improving in all areas of autism care including but not exclusively adults who struggle to even get a referral, and girls and women too ( as mentioned ). That anyone would attempt to blame others on the spectrum for the fight over resources, instead of directing that at those who are responsible for providing the right care, is deeply disappointing as fighting with others who also need help is not the way to go. You are a parent here, not someone with autism. You know how autism affects your child. You do not know how it affects others and it is not your place to imply to others they shouldn’t ask for help, they don’t need it or that they’re not as important as your child.

And please don’t assume that because someone is verbal or articulate in some areas, that autism doesn’t greatly impact their life.

That's true of me. Everything I knew about ASD until recently was false. I thought it meant you had problems with expressing your feelings. Which I don't.

Turns out I have severe impaired executive function (which I only found out existed a few months ago), various sensory issues and some other stuff. They've caused me problems my whole life. Even when I was a little girl friends called me the absent minded professor. The idea of being able to learn strategies to reduce the impact of these issues is very exciting

I think it is one at the expense of the other, in practice.

My original post was in response to A lot of the conflict between autistic adult advocates and non-autistic parents of autistic kids is coming from self-diagnosed autistics.. which IS my experience. 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.

That’s what I see. I’m the Mum with the dc who is usually the most severely effected in the room. I don’t need to ask for a place at this table or a voice, it’s mine. It will be a cold day in hell before I quietly move to the back of the bus and an even colder one when I won’t say what I see.

The trans discussions are interesting. Autism Self dx and the impact of DSMV on the autistic community are about a decade ahead. Our safe spaces are gone. Brighter more dazzling and brave people are centre stage. Our funding is spread ever thinner.....and as I said voicing any of this is social suicide.

I meant for all but adult diagnostic services are so difficult to access that this needs to be addressed. Needn't be one at the expense of the other.

Exactly. Nobody said to divert resources or stop advocating for others, jfc.

And I’m not for one second engaging in a conversation where someone on a fucking forum determines what ‘greatly impacts their life’ means or if it’s valid or comparable to others. It’s a disgusting question and if you had any awareness of the autism spectrum you wouldn’t ask it. Decades of people misdiagnosed or missed altogether, struggling with all kinds of things in their life and someone is bitching because we want better services for those adults? How gross.

itwouldtake nope I'm aware that most autistic people don't get the support they need, I said so earlier

the solution is to push/campaign (as jessica says below) for better understanding/diagnostic services for adults in particular.

I meant for all but adult diagnostic services are so difficult to access that this needs to be addressed. Needn't be one at the expense of the other.

Sorry the @JessicaWakefieldSV somehow disappeared from the top of that post.

Don’t misrepresent what’s been said please.

I don’t think I did. You suggested that

the solution is to push/campaign (as jessica says below) for better understanding/diagnostic services for adults in particular.

If that isn’t focusing your time and effort I’m not sure what is? As I asked WHY would I do that? Why would I choose to spend my limited resources in that way? How does that help more severely impacted diagnosed autistics?

Are you perhaps under the impression that visibly autistic severely disabled autistics are already well supported and cared for?

And please don’t assume that because someone is verbal or articulate in some areas, that autism doesn’t greatly impact their life.. Given, but perhaps you could consider what “greatly impact their life” actually means in this context? What for example is the life expectancy of these late to seek dx individuals? Do they live independently? Do they have secondary or beyond education? Do they have spouses, children, jobs? Can they vote? Access healthcare? “Greatly impacted”?

Hi SpartacusAutisticus, I don't want people at work to know as I've not been there long and I'm on a temporary contract. I'm just hoping that I don't have to wait years to be seen.

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?

Who said this? Nobody here. Don’t misrepresent what’s been said please. Not ‘focus’ but extend the services so that referrals are more possible for adults who were missed as children. And please don’t assume that because someone is verbal or articulate in some areas, that autism doesn’t greatly impact their life. It can and it does. It’s not an either or situation, everybody on the spectrum should get what they need, starting with referrals and enough professionals to properly assess.

I've not sought a diagnosis.

It's been made clear to me that I am autistic by a paediatrician, a couple of specialist teachers of autistic kids. My mother thinks I am. She doesn't think her other children are. All backed up by vast amounts of reading/courses I did to 'understand my son'.

I discovered I already understood a lot of it and hadn't even realised my view of the world was so totally different.

I'm not sure what benefit a diagnosis would bring me. There's no help based on a dx! The only reason I've not rejected it entirely is that it might help when I'm older if I need care.

I still get pissed off at the people who are clearly identifying as autistic just because it's trendy or out there and they want blue hair. Or they can't be bothered to try to be considerate of other people. Being a selfish twat is not the same as being autistic.

A lot of the conflict between autistic adult advocates and non-autistic parents of autistic kids is coming from self-diagnosed autistics.

I can only partly agree with that. Because a lot of the conflict I've witnessed occurs when NT parents of autistic kids try to silence (diagnosed) autistic adults by saying we aren't disabled, that we're all high functioning and know nothing about really being affected by autism, and even worse accusing us of stealing resources from their kids, who according to them are "really disabled", not like us HF autistics.
And of course they make no apologies for making assumptions about a person's real life abilities based on the fact you can type on the internet.

I think the lumping together of people who have come to believe they are autistic and people who were diagnosed in childhood is bloody unhelpful and is massively detrimental to severely impacted autistics. It upsets me, and it DOES matter that it is happening in small local support groups because that is often ALL that is available.

I agree, it does matter. Especially when less able autistic adults are being forced out of social groups by self identifying Aspies. There's nothing worse than being lectured to by a self identfying Aspie, listening to them lecture you about how autism is a gift and not a disability, that all I need to do is find a way to make my special interest work for me. People like that can fuck off, having the audacity to lecture me when a) they don't even have a fricking diagnosis and b) they not only work and live Independently but they have kids as well. Yeah, thanks for reminding me what I'll never have.

Pink - I'm not talking about women who think they probably are autistic and are seeking adult dx. I'm talking about those (generally quite young) who self identify as autistic and have no intention of seeking a dx. Big difference

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?

Thanks for the link, I've filled it in although I'm currently waiting assessment so am not diagnosed. I've been on an NHS waiting list for 6 months but have been aware that I might be autistic for over two years now. I found it difficult to get a gp to believe me so it's taken a while to get to this point. I completely understand about the self ID concerns and wouldn't actually say that I was autistic to people unless I had been assessed. It's hard though as I'm not able to access any support at the moment and find work a real struggle.