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

but I know too many people (adults and children) with diagnoses who were initially told by doctors etc that they were not autistic.

Yes me too. There’s a really good YouTube channel of a young woman with autism who had seen several therapists before being diagnosed, she’s very clearly autistic to anyone with any remote idea and when she talks about her life it’s sad how unnecessarily hard it’s been because of the lack of a diagnosis earlier. Our own DD has had serious and frightening mental health episodes from the lack of diagnosis and support. It builds up over the years and affects every aspect of all our lives.

This isn’t correct. If you can demonstrate the need you can access this without dx.

Yes it is, we’ve been in this position. You really enjoy talking over others don’t you? This is literally what schools have told us.

You have no idea if your child is the ‘most severely affected in the room’ as you don’t know the other people or their lives. You know your child. That’s it. You think this makes you an expert and someone who can decide who is more affected, who should get limited resources instead of campaigning for more. It doesn’t. It makes you an expert in your child and how autism affects them. You have no idea of the lives of others with autism or what their life is like. Stop assuming things based on your limited experience and listen. I would never get on a thread and insist my child is more affected than anyone else. It’s a meaningless phrase in any case.

Simple things like schools allocating separate rooms at exam times because of sensory issues, can’t be offered without a diagnosis.. This isn’t correct. If you can demonstrate the need you can access this without dx.

To be clear my dc doesn’t have LFA, I said he was usually the most severely effected in the room. that’s not the same thing.

morriszap you might be right about your relative, but I know too many people (adults and children) with diagnoses who were initially told by doctors etc that they were not autistic. The range of presentations is wide and it can be missed by professionals who aren't adequately trained/experienced.

Well put jessica completely agree.

Yes I know that. I’m not claiming anything you didn’t say yourself. You are complaining about others campaigning or advocating for better resources for people with autism who are undiagnosed incase that takes away resources for those you think deserve them more. It’s not an either or situation. Those undiagnosed who are autistic, can’t even explain to others things about themselves without a diagnosis. It makes everything so much harder without one, nevermind them getting on to support that they might need. Simple things like schools allocating separate rooms at exam times because of sensory issues, can’t be offered without a diagnosis. At work, for adults, you can’t ask your boss for understanding if you can’t name why you behave differently and need support/awareness/understanding. You think because someone can go to school or work, that they shouldn’t get help because resources are scarce and people like your child deserve it more- you literally said so earlier. I think that is so uncaring and lacks a basic understanding of autism. The point we were making earlier is that services need to improve so that obtaining a diagnosis either in childhood or as an adult, is not so difficult. Then we wouldn’t have an issue with people self IDing, as it would not be necessary for anyone and those taking the piss would be rightly told to stop.

What was actually said

*PinkSpiderplant

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.

*Itwouldtakemuchmorethanthis

hmm 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?

Someone very close to me has self diagnosed herself with aspergers in late middle age.

I am absolutely certain this person does not have any form of autism.

I'm torn on the diagnosis thing. My close relative has not sought a diagnosis, I think because she would be politely told she is not autistic.

But at the same time, adult diagnosis is clearly vital to many, particularly as so little was known say, twenty or thirty years ago.

I'm sad to say I take no issue with the op, there definitely is such a thing as a weekend autistic. I know one.

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.

@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.

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?

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

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

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.

'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.

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.

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

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.

@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.

@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?

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

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?

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

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”.