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 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.

This is an excellent explanation of why functioning labels are useless

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

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

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

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.

Not talk about it exactly, but we've had a few "resources" threads where we've talked about how children with ASD are vulnerable to the trans narrative and I thought this consultation was a good "action point" around that. I just want anyone writing new policy atm to do so with stuff like this in mind, since I think this is a really immediate threat to children with ASD (and neurodiverse children in general). I imagine the extended strategy will consider safe guarding issues, and this (to me) is a big one. I'm not living in England so can't submit evidence myself, but just wanted to flag it for anyone else with relevant experience.

I don't have ASD myself, nor am I the parent of a child with ASD, so I don't really have much to contribute to the debate I'm afraid. I spent quite a long time working with children with ASD as a support worker, but have never really been involved in the assessment/dx process. Anyway, I've not abandoned the thread, I am reading (and interested), I just don't have much to add.

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

I think you’re right.

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.

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

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

If you are non verbal, or your verbal communication is severely impaired, then it really is important that people know if you have a learning disability or not. That is ALL HF or LF implies. Much of the upset in the terms is because people are misusing them and they are used to describe how well someone copes with life (passes for NT?) fairly routinely in the general population. Learning disability is an alternative but it isn’t without baggage. Lots of people don’t understand the difference between Learning Disability, and Learning Difference and for some it isn’t clear what it means at all.

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.. When you say someone is autistic, learning disabled, and non verbal, that is exactly the same as saying a person is LFA and non verbal. (Nb among those who can’t communicate fluently through speech many are actually verbal (as in have some speech), but I am using your example).

It isn’t insulting to state someone has Learning disability any more than it is insulting to say someone is autistic, though I know that there are people who find describing someone as autistic dehumanising and prefer “has autism”. Someone who thinks being HF/notLD makes your life “easy” isn’t really understanding what “autism” is, but in the same vein someone who thinks autism and it’s impact on your life isn’t massively magnified and impacted by also having a LD (being a LFA) and also having severely impaired communication doesn’t really understand it in that context either. More than half of the autistic population face these add on challenges to their lives, yet suggesting that they might be disadvantaged in the community doesn’t cause compassion or concern.

Yes, including one who was non verbal until 7. Why?
Because your insistence that functioning labels weren’t relevant to autistics made me wonder if you understood how it could impact an autistic with severely impaired spoken communication. It seems you do understand and have experience which is surprising given your posts.

Much of the upset in the terms is because people are misusing them and they are used to describe how well someone copes with life (passes for NT?) fairly routinely in the general population.

People misinterpret them. That’s the issue. Phrases like ‘high functioning’ and ‘articulate’ ( which you used ) have meant life is harder on those people, as explained numerous times. You yourself have a very poor understanding of what life is like for autistic people who you considered were not greatly impacted if they were ‘articulate’ had jobs etc

yet suggesting that they might be disadvantaged in the community doesn’t cause compassion or concern.

It causes compassion and concern here, there’s nothing to indicate otherwise. But you’ve consistently used them to hide behind when your words on other people on the spectrum have been challenged as they upset and insulted people here. You’ve repeatedly just kept referring back to those with learning or more visible disability. You’re actually using them as a defence and I think that’s quite gross. You’re now implying nobody here is sympathetic. Not true. We were talking first about increasing resources for diagnosis. Somehow we’ve gone round and round in circles as you repeatedly try to deflect. The entire community deserves proper care and support and I’m not interested in creating a hierarchy or debating who needs it more. We wanted a simple conversation about increasing resources for adults and all you’ve done is repeatedly insulted, dismissed and deflected. I don’t know what your problem is but you just can’t let it go and accept that the way you phrased things has been offensive and rude to autistic people- despite autistic people on the thread telling you so. You’re a waste of time as you refuse to listen and refuse to care about how you’ve hurt autistic people here.

I was wondering how to phrase it Jessica but yes I agree interacting with you seems to be fairly futile. I’ve tried to respond to your points but it’s fairly time consuming and doesn’t seem to be very productive. Shall we just stop interacting? I’ve been wanting to say that for some time but didn’t want to add to your upset, but since you think I am a “waste of time”, I think probably I was imagining a level of cordiality that isn’t present.

I think probably I was imagining a level of cordiality that isn’t present.

Things stopped being cordial after your very first response. Feel free to stop commenting any time. I think most people here are sick of your hurtful contributions.

I think most people here are sick of your hurtful contributions

Yes and your continued refusal to understand what other people are trying to say, along with not demonstrating any knowledge of autism beyond Google stories.

People who think and speak like you are the single biggest barrier to autistic people being included in society. In fact I'd go as far as to say, you're part of the reason why we're excluded.

Fucking ignorance and NT people insisting they know best (because NT opinions are always considered first) mean autistic people don't have a voice.

I think you know this and get some kind of perverse kick out of it.

InTheHeatofLisbon

I’m sorry you’ve been hurt by this persons attitude and that of others, I hope I haven’t contributed. I’m not autistic, I’m the mother of a late diagnosed DD and wife of non diagnosed possible autistic adult. I try and be careful not to use hurtful language or adjust if I have. My initial point that started this, was that we needed better resources for assessment services so that nobody is without an understanding of themselves and without support if they need it, particularly adults. I was instantly told this is taking from others more in need.

As it happens I think resources are better spent on providing support than assessment and that often it seems parents are lead to believe that assessment will solve issues and magic up the support their child needs. It isn't magic, of course. BUT IT OPENS DOORS PREVIOUSLY CLOSED. Again, dismissing my dd's lived experience that she was offered NADA pre-diagnosis.

Stating something repeatedly doesn’t make it true - @Itwouldtakemuchmorethanthis It is beyond ironic that you said this yourself!

You keep telling us that it is not true that you can't access support without the diagnosis. STOP calling us liars. You have NO idea how things work in Australia, and I am telling you that with NO diagnosis my dd RECEIVED. NO. SUPPORT. AT. ALL.

As soon as we had the dx it all changed. And no, they weren't "not giving it to her/avoiding helping us" they COULD NOT offer it to her.

And regardless, the diagnosis was important or ME as a parent, because I had been judged on my parenting because of her behaviour, I was struggling to understand why she didn't want to get dressed, why she didn't want to bathe, why she didn't want to brush her teeth, why she didn't sleep well for 7yrs. I had people tell me to be harder on her, smack her, stop buying her stuff (that she only ever got for her birthday/Christmas), stop excusing her, stop babying her (by cuddling her when she had separation anxiety), that it was my fault she was "cold" and didn't want to be held...the fucking list is endless. So yes, her assessment and diagnosis saved me, and it ultimately saved her.

JessicaWakefieldSV not at all, I've thought your posts were really informative, non judgemental and well thought out.

I also agree with your concerns that diagnosis is excluding people currently and needs to be made more accessible for many, especially women and girls since the current diagnosis appears to be designed mostly for boys and men.

differentnameforthis I'm glad your DD got the DX and support. I too have had some spectacularly ignorant and actually grossly offensive comments about my children's behaviour and suggestions of physical chastisement and harsh parenting to "solve it". Ugh.

Finding places my children can access (clubs, activities, out of school care) has been a struggle all their lives. We now have a very limited access to things which NT children take for granted.

You’re right @differentnameforthis I hadn’t considered you might be talking about accessing services in a different country. I have absolutely no knowledge about how support is accessed in Australia and assumed that because we were on a thread about Think Autism that the focus was the UK.

I haven’t called anyone a liar and I am not the only one on this thread who has stated that support can be accessed before diagnosis. I have clarified that it can be hard to access, and stated that it is unwise to think dx will bring support with it. You would still have to demonstrate need.

ODFOD. First of all you assume the UK is governed by the same laws and legislation.

That in itself isn't true. England is not the UK.

Also, your experiences aren't others people's experiences, yet it's their which are wrong?

I haven’t done that.

For example

SpartacusAutisticusAHF

Both ds (school) and me (work) had supports/adjustments before diagnosis, it does happen, and of course loads of kids/adults with diagnoses get no support at all.

Both ds (school) and me (work) had supports/adjustments before diagnosis, it does happen, and of course loads of kids/adults with diagnoses get no support at all.

That comment was not suggesting that others shouldn’t get a diagnosis or supporting your initial argument in any way.

Nobody here remotely suggested a diagnosis was a magic fix to receive all the support you might need. Just that it is important in most cases to access support, and I mentioned other reasons such as understanding yourself, others understanding you better etc etc data collection included.

The entire points of contention have been about your Itwouldtake comments regarding who needed help, questioning what ‘greatly impacted’ looked like if someone was articulate, working etc and that advocating for better assessments for adults was ‘taking away from those who need it more’. You’ve attempted to deflect from criticism of those comments by talking about other things we never mentioned, such as diagnosis not being a magic wand to receive support etc etc