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

Shocked by some of the attitudes on here.

I'm 45 and have had an official ASD diagnosis for 2 years. Prior to that, I was "self-diagnosed" as it's almost impossible to access diagnostic services as a "high-functioning" female.

My daughter was recently diagnosed too and has only been able to access accommodations at school SINCE she got her diagnosis.

While it's only right that help should be based on need and not contingent on diagnosis, the reality sadly is that if you have an "invisible" impairment such as what used to be called Aspergers, schools can't (or refuse to) see the need and therefore won't help.

My son is currently on the Autism diagnosis pathway, he is 14, quite a late diagnosis for a boy. Our experience is there is very little support whilst on this pathway. The school have said they will put him on the sen register if he gets a diagnosis. He has told me he thinks that no one at school cares at all, he's right they don't. It feels like a constant battle with them.

Birdsfoottrefoil thank you for all that information, it's really useful. One of my friends is struggling at the moment and I'll pass it on to her.

Thankfully my children have dx and have fantastic support, which is why I was so adamant that support doesn't come without diagnosis, since I've been down that road 3 times now. I mentioned being in Scotland since one poster was determined that the UK laws were UK wide which just isn't true.

I really do appreciate that info, I've had dealings with enquire before and they've been ace.

differentnameforthis aye I know what you mean, DS1 left a club for kids with ASN because their record keeping and documentation of incidents was appalling and if it wasn't for our neighbour's children telling their mum DS1 was being targeted by the organiser's NT older son I'd never have known. So I pulled him out and there was an investigation done. Currently we're looking at 2 other clubs to see if they suit him but it's hard because options are so limited.

I hope you find something that suits your DD soon.

InTheHeartofLion you might find this helpful: www.gov.scot/binaries/content/documents/govscot/publications/advice-and-guidance/2017/12/supporting-childrens-learning-statutory-guidance-education-additional-support-learning-scotland/documents/00529411-pdf/00529411-pdf/govscot%3Adocument/00529411.pdf

InTheHeartofLion you also have a right to request assessments for your child.

InTheHeartofLion you might want to contact Enquire.org.uk if school are refusing to provide support due to lack of diagnosis. They should be able to suggest a way forward. Scottish Law is very clear support in schools is based on need not diagnosis (though diagnosis may help evidence need). If you have been told otherwise then they are wrong and possibly trying to wriggle out of the cost of support. It would also hardly make sense to use diagnosis as support needs for an individual with autism can vary from 3:1 support, specialist schooling, individual curriculum and communication support to mainstream education with a few in class adaptations. However, not having a diagnosis is not the same as not having an assessment of support needs and such an assessment should be carried out regularly to determine needs.

@InTheHeatofLisbon Thank you!

We struggle to get dd to attend even autism specific clubs because she just doesn't feel comfortable while there.

Her sister did swimming, ballet, horse-riding and dd wants none of that, for sensory reasons, but also because she has low muscle tone and she struggles with physical activity.

I haven’t done that.

To quote you, just repeating something over and over again doesn't make it true.

You're also calling me and others liars by saying it.

So I'm out, I've dealt with more than enough people like you in RL, I have neither the time, inclination nor the energy to bother online.

But know this, you are part of the problem

You won't admit it, you won't realise it and it is other people who will bear the brunt of your ignorance and refusal to listen.

Isn't that always the case?

I hope you aren't so obtuse when your child is trying to explain things to you.

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

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.

I haven’t done that.

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 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.

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.

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.

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.

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

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.

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.

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.

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 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.

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.

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.

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.