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

@Bumpitybumper I didn't say someone is wrong because they "disagree with me". I said their ignorant comments contradicted current medical research.

I didn't say "all autism is the same". I even posted an explanation of the spectrum and the spiky profiles and stated how much they vary between autistic people.

Stop deliberately trying to misrepresent what has been said.

"Autism police"? Who do you think you are to call people that having just said that "just because someone disagrees with your it doesn't mean they are wrong"? Hypocrite much?

The problem is that until the children get the assessment they are waiting for, then it's impossible for the HCPs involved to know whether their issues are severely affecting their day to day lives, or not. Presumably all parents think it's severe enough to warrant seeking an assessment and diagnosis in the first place. It's like being in triage, where they assess the urgency of your problem at A&E. Once triaged, you will be correctly allocated your place in the queue, but if there's a massive wait for the triage then you will have a long wait regardless, and you just have to suck it up.

The fact is that there are more children and adults than ever before, all seeking a diagnosis of ASD and or ADHD and services are overwhelmed. If you really want to jump the queue then you will have to go private.

They truly do walk among us.

There seems to be huge disparities across the services in different schools, trusts and LEAs. This really needs to be something the government should be looking into. The process for my son did take a few years, but there was something consistently progressing as they wanted to wait until a specific age (which isn't unusual) before confirming a diagnosis, but he still received support. My friends kids were diagnosed very early on as they are on the severe end and knew the signs from the eldest. Most people in my area (as per support groups) experienced the same.

I'm shocked that some kids and parents aren't even receiving support from school and waiting years for even initial appointments. There's definitely something wrong with the system and it seems it needs an independent review of that.

it isn't always that simple, sometimes the kids have to get into a school environment to realise something is wrong, and then you get all the professionals around you going 'oohhh, they'll grow out of it' so you wait, and they don't, and then you have to get pushy about referrals.

my DS initially presented with things like a speech delay, but then within a few weeks of being at nursery for his free hours aged 3, was talking fine. He was a fussy eater, didn't like getting wet.. looking back, clear sensory issues, but no-one flagged it and when i flagged it, just told me it was normal for toddlers and he'd grow out of it. He didn't.
Then when he did get to school, they still weren't flagging autism, he was diagnosed with dyspraxia first at 7, then autism/sensory processing disorder & ARFID at 10, and adhd 2 months later (same dr).

I would love for him to have got that diagnosis earlier, but not one person listened to or believed me, and it isn't much better now.. having been through it with DS, i've been fighting for DD who is blatantly also asd/adhd and at 15 and in her gcse year, only just been paid attention to, because, guess what, she's failing BADLY, because no-one thought it was an issue, as she was 'coping' outwardly, and she was, until she wasn't, and now the shit has hit the fan.

Are you for real? Waiting lists can vary from place to place in case you have been living under a rock. Especially for Camhs. Locally it's 5-6 years from referral. Just be glad it won't be that bad for you but please do not blame parents. such a smug and ignorant comment.

I’m sorry I haven’t read the thread, so this may have been said. In my experience the diagnosis makes no difference at all. You may as well crack on using the things that are available and build whatever you can for him. DLA, Blue Badge, Carers if you qualify, disabled focused groups like swimming etc, tutors if you can afford them, just start now.

I see your point but I have two undiagnosed young adults and the masking et al has severely affected their mental health. They were the quirky/highly emotional ones at primary, one had camhs input at that point as he was highly anxious (and still is) the other floundered socially. Both are high academic achievers and well behaved, so all this was missed at school level.
Eldest now diagnosed st uni (a working diagnosis for DSA) with adhd and dyslexia - they had a full assessment but it was for learning needs - eldest has a lot of anxiety-based issues. Both are on SSRIs.
Back in the day, about 11 years ago, it wasn’t that hard to get accepted through camhs, now it’s impossible so I hear, so something has to change.

I have two children diagnosed with autism. My middle child is exactly like yours, autism, adhd and has global delays affecting communication and understanding more severely. My eldest doesn’t have global delays so presents outwardly as ‘less severe’. But this is where the lack of understanding autism comes in - both are high support needs. Both on high rate DLA. They were diagnosed within a month of each other despite the eldest being two years older. And ultimately, a diagnosis on paper means very little other than the ability to say ‘he is autistic’ with paperwork to show it. What is more important is getting the support structure in place, my middle son had an EHCP and DLA before diagnosis. Both given melatonin to help with sleep, speech and language and outreach programs involved. My friend’s child is non verbal and globally delayed but no diagnosis yet despite being older - again EHCP and also managed to get a hen’s tooth placement in specialist school.

It’s hard, and a constant fight but as parents we cannot wait for a diagnosis for the support needed . And I’ve been there with my eldest school who have dragged and dragged on an EHCP. I spend most of my life chasing people up and it’s exhausting but it’s the only way that the support an autistic child needs now is given. A diagnosis is sadly the least of it.

You literally can’t scam your way to a diagnosis - I have multiple dc with ASD. They all had assessments including the ADOS that parent aren’t present for - you can’t scam it !!!!

This is not something I would ever voice out loud and I hope it actually isn’t the case but I have a speech delayed DS who could be autistic or simply just a little delayed and I’ve had a lot of people on support groups who offer training and support to get the maximum rate DLA. It’s done in good faith to ensure parents who are struggling get what they are entitled to but I can also see how some people could exaggerate their DC’s struggles and insist on getting on a waiting list for an assessment to support a DLA claim. That’s me being extremely cynical though and I’d like to think the system isn’t being abused in that way.

Doesn’t work like that here. My dd was referred three years ago, referral rejected twice and now still waiting. We had to go private.

Who is going to categorise these children and how? That means an assessment before an assessment - Autism assessment and diagnosis services are already incredibly underfunded and under pressure. To begin categorising severity would mean basically a whole new system/service/assessment prior to the actual assessment… And PP’s points are valid about those who would “score” less severe would NEVER be seen. I work in adult services and the referrals and requests going into autism diagnostic services is overwhelming to say the least.
Also the “idea” of autism is that it is a spectrum and will affect children in all different ways, how would you possibly be able to accurately and fairly decide who is “worse”?

My DD to. I dont think I'll ever get over my tween wanting to die, cutting and hitting herself and the lowest point wrapping the blind cords around her neck while saying how much she wanted to die. I'm not sure which of my ND kids have been harmed the most by living in a NT world, but my DDs hidden issues have been no less harmful then her brothers much more obvious issues.

I'm sorry you and your DS are struggling @orangeleopard . What you're dealing with is incredibly hard. My DS behavioural issues started around 20 months, he used to headbut and kick me and smash into the walls and take 3 hours to get to sleep, but he was 4.5 before autism was raised by anyone. My XH didn't like that idea at all which slowed down getting a diagnosis. Melatonin and finally getting sleep made a big difference to his emotional regulation. It didn't solve things but it did help a lot. Where I am (not uk) its very expensive and I know a lot of family's with autistic kids who get it from the US. That's what we do its not strictly legal but seems to be allowed through anyway. I don't know how it works anywhere in the UK, GPs can chose to prescribe it where I live, it's just unaffordable to get it that way, especially when you're a carer and can't work.

This. So yes, YABU.

Pay for a private assessment if it's that urgent.

Being on a waiting list would make zero difference to a DLA claim (I’m a welfare rights lawyer).

But DLA ask for supporting evidence ? So whatever a parent writes they also see if other professionals and school are seeing the same difficulties - you can be trained to write it a certain way but they go to great lengths to verify that information

That doesn't exist in my areas either. We were refused SALT by a phone call assessment. They wanted us to get him tested for autism (which I'm 99% certain he does have) but waiting lists are long.
In my area you can't get SALT if you're wanting for an autism referral but you can get SALT if they get diagnosed. So things are different in different areas.
The system is rubbish but no idea how you'd fix it. My DS has very high needs, I would love for him to go to the top of the list but that's not fair on the children who have already been waiting years. It's frustrating and incredibly sad.

That interesting- why is it a question in the dla form if it makes no difference?

I think it's disgusting children are having to wait so long but not sure your suggestion would work.

Probably been said but I'd Research right to choose and go to GP to try to get an assessment sooner.

Look at biovea and try a low dose of melatonin (it's transformed my son's sleep and therefore his ability to cope during the day). Try to get it prescribed but it's not easy!

Apply for DLA even without a diagnosis as it's needs based as this will help you fund therapies privately.

The ENT issues are probably making everything far worse.

I suggest pushing at that waiting list as much as you can, as that’s more likely to lead to immediate improvement than an autism diagnosis. It’s probably a shorter list too.

I voted YABU, but with huge sympathy for your position.

The diagnosis shouldn’t impact the support your child is offered, that should be needs based.

This is really tough, the problem is the system is broken and it's failing the majority of children. Sadly most services (even after waiting several years for them) in reality are going to assess and provide largely written recommendations for parents/school to implement rather than any actual ongoing/long term input. That's not to say you may not get some reviews or a small therapy block but there's nothing like weekly/fortnightly/monthly support. The children who have that have had private assessments and ongoing support often ended up at tribunal.

I do believe a child should be seen based on presenting need and not diagnosis – diagnosis is often a lottery and not all children need specific services because they have a diagnosis.

The evidence shows early intervention is key all around. All of the children on a waiting list for any therapy will have needs that are impacting their day to day life.

Anecdotally I generally see those with 'less' severe needs typically make very significant progress which may mean they can live completely independently, work etc. Input can also prevent complete burn out so the benefits are massive. I couldn't say they should be bumped down the list for children with more severe presenting needs.

NHS SALT isn’t particularly effective in my experience anyway. We had to go private for DS because we saw no progress after a year. If you can afford to go private, do it because it’s the best thing we ever did.

As for other services, I would be continuously calling the GP to plead for help with his behaviour to be honest. Sounds like he needs urgent help if he’s hurting himself and other children daily.

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’.

This was my brother, he would mask all day at school then come home and have violent meltdowns from the stress of it all and because it happened at home, no one but the family saw it. To the outside world his day to day life was not impacted and yes, he was attending school “normally”. For a long time my parents were told it was a “parenting issue” as there were minimal issues at school but eventually he did get an autism assessment but by then it was too late, he committed suicide and left a note saying he could no longer pretend to be normal anymore as it was too much i.e. what we now know to be masking. The report from his autism assessment confirming his diagnosis came through afterwards and was dated 4 days after his suicide.

I’m very sorry for what you and your son are experiencing OP and you shouldn’t be in this situation; I understand that when you’re in the trenches it’s hard to see things from another point of view which is why I wanted to share my story. Just because someone’s struggles may not be outwardly obvious, it does not mean they’re not there, it does not mean they’re not severe and it does not mean they’re not deserving.

I hope you and your son get the help you need and I wish you all the best.