To think autistic children with needs affecting their day to day life should go to the top of the waiting lists?

[orangeleopard]

As The title says, children who’s needs are severe enough to impact their every day life to an extent that they need help urgently should be put above all of the other children on the waiting list that ‘may’ or ‘may not’ be autistic. My son is in primary school and only able to do half days due to his additional needs, but is told to ‘just wait’ to have his initial appointment with a pedestrian. He hurts himself and others on a daily basis. He doesn’t sleep until midnight/1 each night as he’s so hyperactive. He has severe meltdowns that sometimes lasts hours. He cannot speak properly and has also been waiting years for speech therapy. He is a severe flight risk and runs as soon as he has the opportunity to. He also has no sense of danger and injures himself on a daily basis. His day to day life is affected so severely , as is mine as a parent and he needs severe help yet is told to just ‘wait’ for his assessment to get diagnosed and help. Yet there are children on the waiting list who yes, deserve to have an assessment but needs are not impacting their day to day life as severely- ie they can attend school ‘normally’.

am I being unreasonable to think children like my son should go to the top of the list and that the list should be based on need

You can’t scam a real diagnosis obviously. But the time wasting idiots who think there poorly behaved kids have issues other than behavioural ones that clog up the lists are the problem

I’m not suggesting that people who have genuine things to diagnose are scamming.
I think that people who are too lazy to discipline their kids and just want to get extra money clog up the waiting lists for those who genuinely need the help and cause people to wait longer.
iv seen parents suggesting they’ve been appealing, fighting for years and the kids feral

So I may have had ME after all, but perhaps complicated by undiagnosed AuDHD? Or even triggered, to some extent, by it?

Highly likely, yes. I have ADHD as well. Being autistic/ having ADHD and living through childhood as someone undiagnosed and therefore unsupported means liv

No they’re not because they don’t make it through the screening to get on the list. The “problem” is better diagnosis, more awareness of how it presents in girls and Covid backlog.

Sorry!

...means your body has been in constant state of stress for decades with no respite and the physical effects of this like constantly elevated cortisol levels make it more likely you will develop autoimmune conditions like ME. The prevalence of ME and other autoimmune conditions in autistic people (and also abuse victims for similar reasons) is many times higher than within the general population.

I get the frustration. But agree with others . It's the system itself. The waiting times are now ridiculous.
I know the number of children and adults seeking diagnosis has increased.
But the back log and obvious lack of funding and planning by the torys has caused this.
Hopefully things will improve .
When my dd got diagnosed 9 years ago the process was so much quicker .
Even with all the different departments doing assessments and sending them to the paediatrician . All took under a year .

Also as someone who's child will always need a carer . And who new from about 16 months she was different. Routine has been the main thing that helped us.
She is a teenager now and has had the same weekly routine for years . It works wonders. And obviously any changes we have a good but simple chat about to pre plan and check all ok.
But like others have said after diagnosis we didn't get any help. She saw the occupational therapist for a few years and speech therapy for a while . Although still has problems with speech. And that was that

Every child with autism has things that effect the life from day to day! No one should be able to just go to the top as otherwise certain children would just keep getting push down an never be seen that is why it goes in a waiting list order which is the correct way todo it! There certainly does need to be more open access support for those waiting tho.

Nor mine! My selectively mute daughter can't access LA speech therapy because she is unable to talk to them. She needs therapy for selective mutism which would also tackle her pronunciation of some words. But they won't provide that.

It does seem like your local authority is exceptionally slow! We raised concerns at 19 months for my son, he was diagnosed by 2.5, waited till he was 3.5 for a nursery and we had an ehcp as we knew he needed a massive amount of support. Are your school helping the process? Have you been waiting for over 3 years? I think that's very slow at this age when it's obvious there are significant needs.

No, because until you get the assessment they are going on what the parents are telling them. You don't think people would exaggerate their child's symptoms to get bumped up the list? If you want to get seen quicker you can pay for a private assessment.

I completely understand your frustration and how hard it must be for you and your DS.

But as Pp's have said I have no idea how this would be tested. DS is in mainstream school and on the surface is coping well, people are very shocked when I tell them about his ASD. He is constantly masking but at home his meltdowns are very violent and frequent. He attacks his younger brother, breaks things, kicks, punches, bites and scratches. Spits in our faces. Won't sleep and is awake hourly throughout the night. But if school were to report on it they would say he is a clever, polite boy with a good friendlship group.

We had to go private as school were not supportive.

With regards to the sleep you don't have to have a diagnosis before being prescribed melatonin and I found it quite easy to get with a referral from the GP's to the sleep clinic. He is no longer awake till midnight although still waking frequently through the night.

You can also claim for DLA before the Assesment if you aren't already which could help pay for private Assesment.

Not helpful, because your post implied that anyone who has SEN meets the criteria for assessment of needs by the LA, which is untrue. That means that other parents may read your post and think that as their child, who is coping with school with or without some support, should be assessed.

Also, the school doesn't need to prove that it's spent £6k. That is a notional amount. The legal test is that the SEN provision needed goes above and beyond the usual resources of a school. One of my children had been given no SEN support despite ending up completely out of school. I was able to argue that the failing of the school wasn't her responsibility, and the absence of Assess, Plan, Do, Review cycles was further evidence that the school could not meet her needs. She was assessed, given an EHCP, and placed in an independent specialist school.

@orangeleopard ipsea.org.uk has all the information and even template letters you can use.

They seem to be prioritised in my area.
My son has been on the waiting list for 3 years. We recently had a letter saying it would be even longer as there are children with greater need being seen first.
I don't have any problem with this, so I have just left it.
Perhaps you need to make his difficulties more apparent to them?

I’m not sure if you are offended by my post or agreeing.

Agreeing.

You were quoting someone else I think.

(CBA to check)

What above the abused and neglected children that have been placed in foster care?

In some areas, those DC are prioritised.

But having worked for a ND adult service for years in the past, we didn't triage. Everyone went on to the same list and no individual was prioritised. The waiting list was years.

Because a) many people or their referrers thought their assessment should be prioritised for X reason and how do you choose? A is at risk of dropping of out Uni but B is at risk of CYPSS involvement with their DC, C is at risk of continued substance abuse. D is at risk of involvement with crime, E at risk of job loss. Who wins? which is more important?

And b) because if you prioritise A, B, C, D and E as their referrals come in, the people who seem to be managing better but are still presumably having their own struggles will literally never get to the top of the list and be seen.

The only fair way to do it was treat everyone the same.