Anyone else noticing the uptick in open hostility towards people with ASD?

[FFSakeDrinkSake]

As the title says. It feels like it's open season recently. In the last few weeks alone I've seen many threads questioning the validity of Asd, the credentials of those diagnosing the condition, the 'explosion' of diagnosis', the 'fact' that you qualify for extra benefits if you are autistic and/or have ADHD, the apparent drain on resources kids with ASD have on the educational sector depriving others and most recently the idea that someone (self diagnosed) can 'outgrow' autism. Most of which contain the worst misinformation about what we're trying to deal with on a daily basis and making it sound like we're just trying to .. i dont even know tbh.. scam our way through life?

Disclaimer NATAAT.

I included my DS's autism report which was not recent.

I read something about claiming esa credits so that limited ability to work is already established. Then the yp can avoid assessment.

I didn't pay much attention as we have a few years to go and things may change but worth looking into. I can't imagine my son going for an assessment although tribunal maybe amusing if they classify him as fit for work.

It’s fine to talk about the worst days. Make it clear that it’s over 50% of the time. The other thing we see is the DWP assuming that if ‘worst days’ are less frequent, they’re gone the rest of the time. Which obviously isn’t usually the case.

To my knowledge, being in the LCWRA group doesn’t exempt people from assessment. Although the LCWRA award is good evidence for a pip claim. Being unable to work doesn’t necessarily make someone eligible for PIP either.

If you are your DS’ appointee he won’t have to be involved in assessment (it sounds like you’ll need to manage his benefits for him). Sometimes they do assess on the paperwork as with a pp who was awarded without assessment. The best chance of achieving this is to write something like ‘Sam will be unable to engage with an assessment due to his needs. We therefore request that this claim is assessed on the paperwork provided, as a reasonable adjustment under the Equality Act 2010’

Thank you. Sorry for giving the wrong info- it stuck with me as I don't want to put him through it. I try not to worry too much about pip as I think common sense will hopefully prevail (eventually). Yes, I plan to be his appointee and we will be applying for deputyship too for both financial and health/ wellbeing. I believe tribunal/ pre action for jr should be enough to show that the la don't always have his best interests at the fore when costs are involved.

I always think it's crackers that we are responsible for their education and wellbeing and then as soon as they turn 18 we have to apply to the courts to continue.

Things may change with pip as you rightly say. I don’t think you’ll have a problem claiming pip for your ds.

I think pip transition at 16 is bonkers, and that some of the descriptors don’t apply to any 16 year old! I don’t expect many 16 year olds can budget independently or travel to unfamiliar places without support. But I could be wrong (waiting for someone to come along and say that we’ve all failed as parents if our dc can’t cross several countries independently at 11 with only a compass and a map!).

It is frightening to think of the LA taking responsibility for DCs’ best interests at 18. Terrifying.

I'm so grateful that you replied to this as I had it my head that pip was 18 not 16, which will soon be creeping up. There's so many different things at different ages.

I just think for our ds that he can't be left alone at any time he's awake and if he does do something (he can dress himself in shorts and tshirt for example) that he still needs someone to talk him through it and put things the right way etc plus visuals on the wall. He can't care for himself, it'd be crazy if they said he could. (I'll detail it and send copies of paperwork showing it with 2:1 support when in the community).

It is bonkers that the la take over especially when you think about the fights parents go through over their children's rights. I can imagine our la contesting our deputyship. Most LA's just see £'s when it comes to people with any disability.

I don’t imagine you’ll have any problems with pip but if you do, feel free to pm me.

I hear you re the LA. Completely.

I just found where I got confused with the esa credits and thought I'd post as it maybe of interest to some. It may establish that the yp can't work at 16 which helps if you will be applying for uc for them while they are in education.

https://contact.org.uk/help-for-families/information-advice-services/benefits-financial-help/universal-credit/universal-credit-for-young-people/?fbclid=IwZXh0bgNhZW0CMTEAAR3De6cDBSYJmAxiDBOpiOaupzcVVVN64bOYXxzudYTXANugTEwBcXac6js_aem_XGdqV391EJSUkADnnCQ9jQ#who-is-receiving-education

This is really useful thank you

It certainly could be managed better all round.

When I refer to parents pushing I mean as they are pushing at a situation my friend has absolutely no control over. She cannot change the waiting list times (which some parents seem to think she can), appeals that have already been through an appeals process and rejected etc.

She will always appeal decisions when needed and fight for further support for the child and parents but it's devastating when they take it out on her. As I say some just don't seem to understand she only has so much say. It gets nobody anywhere pushing at the person who has no control/authority over the situation that is out of their control.

I really do hope that the new Government reviews processes and people get the support they need asap.

The unit my son has just left has a maximum of 8 pupils and they have 5 staff members - 2 teachers, 3 LSAs.

Not even 18. They have to apply for PIP at 16!

According to someone I spoke to at PIP most autistic DC are completely independent at 16 and able to do everything themself. Which begs the question why they are getting PIP!

Oh if only that was true!

That would mean that I would have had a different day today!

The application at 18 is to become a deputy. We've been advised to make the application when ds is 17 so it's in place for his 18th birthday (if the courts agree) otherwise the la will effectively get the responsibilities we have now as parents. You can apply for two diff types (like lpa but where they already don't have capacity). If you have a child with more severe needs it's worth looking into.

I got diagnosed with ADHD at age 31 (they also said I was probably Autistic). Don't get any type of benefits. I do think diagnosis has got a bit trendy though, wouldn't say it's linked to benefits though. More underdiagnosis for years and a lack of through multi-agency nhs diagnosis.

Well kids with disabilities are apparently now an existential threat to LA'S so this sort or rhetoric clearly adds to bad feeling.

https://www.specialneedsjungle.com/send-is-an-existential-threat-to-las-financial-sustainability-junking-the-send-tribunal-is-part-of-the-answer-claims-new-report/?fbclid=IwZXh0bgNhZW0CMTEAAR2vHurTZYZC4YmE9pU_lEdVuOt8FfdVJyK3GuNeROVtJG17Vmg2u-2TpSQ_aem_-2J3Kwk3sGvTwHdseGBIyQ

The solution..... to get rid of disabled children's legal rights.

Similar article in the Guardian today. Could make one think that the the disabled kids are responsible for the financial ruin of local authorities and not the chronic underfunding of Send education

www.theguardian.com/education/article/2024/jul/25/5bn-debt-crisis-of-special-educational-needs-could-bankrupt-english-councils

I'm not sure what the answer is, it's too big of a problem for my brain. I know councils are under funded and can't meet need but I've also seen the ppe contracts and the money made from the Truss' budget. I also see my la wasting huge amounts of money too which if spent well would go some way to helping the situation.

I think we will have rights removed and kids will suffer because of it. It's an awful situation and unfortunately many of these children have already been written off, those from poorer backgrounds will suffer the most.

I don't agree with inde schools making profit but when there isn't la provision what can be done?

I just hope they don't re open institutions or stop the work that's being done to bring the people with autism or ld back home from the ones that still hold them for no other reason.

I also think we will see rights removed and watered down. There has been a very persistant reporting that sen children are bankrupting councils for some time now. Without looking at the ways councils are funded

I do actually have some reservations about some of the profit making children's homes/sen schools though.

I don’t.

We have a different government in power.

Also we have a much more connected and vocal ND community and the numbers are growing.

I'm so sorry @Purplebiscuitwithsprinkles that your friend has been subject to this and feels she has had to change career.

I absolutely love our SENDCo and I cried at the end of term as my DS is going into secondary education in September and everyone, especially our wonderful SENDCo has supported us all so much.

I am not surprised your friend experienced what she has though, because we've seen it ourselves. When my other half came back from an SEN event he took our DS to, and had seen some other parents, he said "I didn't realise how much some parents hate Mrs X".

I like to think we had a good working partnership with our SENDCo and school, but I think that's the crux of it. You have to work with the school and can't expect them to do it on their own. We implemented the same things at home they were using in school and were under no misconceptions of how very difficult it was. A lot of parents are reasonable like us I think, but there seem to be even more that aren't. I've listened to them and I don't know what to say, because I know it won't make any difference.

Maybe it's a wider issue as it often seems to me that people expect everyone else to do things for them, be it school, the government, the police, or whoever without any work on their side. I also think we only ever hear about bad experiences in the media, so the perception of what people are going into is skewed. In truth a lot of the time you've already had a fight to get to where you are so that doesn't help.

Please let your friend know she is appreciated and there are many many parents who do know how hard she works. I'm really sorry she's had to leave her profession and hope she has success in her new venture.

I can imagine that this could be true if you are including all the people who won't even find out until they are adults - I have a diagnosis of autism and I travelled abroad with just another 16yr old aged 16 and went to uni at 17 - but equally I wasn't also applying for PIP and would never meet the thresholds for disability benefits for my autistic traits (even though they do affect my daily life).