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.

I'll be particularly interested in this because I'm currently being assessed as an adult for ASD. I've had four 2.5 hour sessions and am waiting for the feedback session. Then we move on to strategies.

I found out I might have ASD when DB2's psychiatrist suggested he had (he was originally seeing the psych for bipolar). DB2 and I are very alike and have both been recognized as weird, even by those who love us. Then I came across a thread on Mumsnet which listed a whole bunch of issues I suffer with.

From what I've read on this thread I've been very lucky to be referred and assessed so thoroughly.

Thingybob, that's a misreading of what Spartacus said...
and the ASD diagnosis shouldn't determine whether you get a lot or a little support, that should be needs based. In theory, in reality almost nobody's getting the support they need.

jessica I totally agree that it's annoying when everyone says they think they're a 'bit autistic'. It's also inaccurate. But if we ignore absurd claims about an 'explosion' of autism (bollocks) then it stands to reason that similar percentages of adults (as children) will be autistic, knowingly or unknowingly. Pursuing a diagnosis can be well nigh impossible unless you can afford to go private, so many of those 'identifying' as autistic most probably are.

prawn good luck with diagnosis!

A LD was a requirement for Classical Autism and that is why it is different to HF types.

Actually you're wrong, speech delay is what separates what the DSM called "Autistic Disorder" (also known as Kanner's autism or classic autism) from Aspergers Syndrome. If a person had an IQ over 70 and no clinically significant speech delay (as in they spoke before three) they would have been diagnosed with Aspergers. But if a person had an IQ over 70 and delayed speech, they would be diagnosed with autism.
A learning disability has never been a requirement for a diagnosis of Kanner's autism.
In fact when the criteria was first drawn up by Kanner they excluded individuals with a learning disability (and those with epilepsy) because they wrongly believed such conditions could not co-exist.

Read the criteria for yourself www.autism-society.org/dsm-iv-diagnostic-classifications/

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

I totally understand why people claim to be autistic without diagnosis but I do think it’s not a good idea and I do think there are A LOT of people who believe they are autistic but are not seeing their situation clearly. 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 see direct correlation to women’s spaces, awards, opportunities and funding being invaded by transwoman....but it is social suicide to say so.

itwouldtake I do see your point. I guess the solution is to push/campaign (as jessica says below) for better understanding/diagnostic services for adults in particular.

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.

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?

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

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.

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.

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.

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.

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”?

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

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.

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.

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.

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 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.

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.