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

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

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.

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

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

This. So yes, YABU.

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

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.

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”?

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.

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.

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 !!!!

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.

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’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.

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.

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.

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.

They truly do walk among us.

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.

@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?

Lots of experts also acknowledge that because of spiky development profiles and challenges that autistics face, that support needs can change so it's not always appropriate to categorise individuals with autism into a category as they won't necessarily stay in that bracket and it dismisses any help that they might need in future.

How would the triage system work, though? It would be self reporting by parents or GPs/teachers etc who aren’t experts. Imagine the grief you would get from parents saying that you didn’t think this was the most urgent when parents were tearing their hair out at home trying to get help for their child.

@User645262 - it costs £2k to get a private diagnosis. Money that people really do not have. It is expensive as professionals need to come out and observe the child in the school setting, plus it is a multi disciplinary assessment involving many professionals. A clinical psychiatrist will make the diagnosis but the assessment team is comprised of several professionals.
As well as my DS, who was in the support system as a pre schooler and got an NHS diagnosis, we are on a wait list privately for DD 17 who sailed through primary but came to grief at high school and took an OD. I suspect she is high functioning autism.

OP - sorry to hear of your struggles. No doubt you will be well familiar with the DWP system, being disabled yourself.

It is very concerning that your HV was not on the ball in helping you to access help years ago. I think you need to go down the DLA route and go private. It wont change your DS but having a formal diagnosis does open a few doors in education.

It should definitely be more consistent everywhere. We were with CAMHS and they proposed going for autism diagnosis and it only took 3 months to wait whereas friends who have gone a different route via GP face a really long waiting list. And it seems very different in what you can access in different areas of the country. I can see you need more help than we do and so in theory would have been fine with you going ahead of us in the queue but agree with PP about how is that practically applicable across the board

Your DCs struggles are visible to you, but other DCs struggles are not. Actual diagnosis will not do much to help your DC. It is the speech therapy and EHCP that you need, both of which can be accessed without confirmed diagnosis. I would suggest approaching the school/LA to see if any SEN support groups/classes could help you with strategies. I also find Instagram can give lots of useful tips. Pages such as resolvetoplay, peachy_speech, fiveminutemum, abbiewalkerh.

That depends on where you are in the country. The waiting list here for speech therapy is 18 month +.