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

That is a tricky question. My son is nearing GCSE and we really need his diagnosis and associated support needs acknowledged to keep him in school and to start prepping him for independent adulthood.
Not more important than your DC OP, but it certainly feels like an urgent need to make sure our DC can achieve and be able to contribute his best to society as an adult without needing longterm social support/benefits. They need to blast those waiting lists (by allowing non NHS assessment to be acknowledged by NHS or referred to by NHS for ASD and ADHD)

So that my blood boils thinking about it it makes me so angry, parents wait to see if little Johnny will grow out it then panic when they don’t and suddenly expect to jump the queue

At 2 my DD is on a waitlist for paediatrician, immunology, dietitians and speech pathology. Why should I have to wait longer too if people have not decided to look into their child’s health ( which is why I’m asking obviously different if OP has been on a list for 2+ years)

I understand your frustration but I’ve a NT reception child with a mechanical (can’t think of another way to put it) speech issues. She’s been on the list for SALT for a year. Once she’s had some help she will be sorted and should achieve to her best abilities in life. If she doesn’t get help it will have an impact on her educationally and socially which will then affect her chances in adulthood.
Id love to be able to pay privately and just get it sorted but I’ve an asd 8 year old who only sleeps a few hours a night and only if I’m there so I’m struggling to work.
The issue isn’t whose child should or shouldn’t get the help, the issue is the services should be better funded. The government talks of preventative healthcare well helping children fulfil their potential is preventative.

My daughter's autism "didn't affect her daily life" that anyone else could see, but when her mask broke my god, it fell apart quickly. From lead in the school play to lying on the school field screaming that she wanted to die in 8 weeks.

How would that work though? Who would be responsible for determining which children need to be put to the top of the list? The parents couldn't do it because of course they're all going to think their child deserves to be seen first. So another assessor? So then you'd get added to another queue to be assessed for where you go in the main queue for assessment?

The system is broken, adding additional steps won't fix it. The queue shouldn't be there at all, but while it is there just isn't a reasonable way to determine who should be placed where in the queue.

OP it’s incredibly frustrating but presumably it makes sense that they treat everyone the same until there has been an assessment done and after that they can stratify by assessed need.

It’s not so much about reshuffling the waiting list, more that everyone suffering because the Tories starved the whole thing of funding for past 14 years. During which time people are more understanding about what autism is and lots of girls for example are now being recognised with autism when before they would have been offered no support or the wrong kind of support.

This.

In fact, in the long term research shows that often those who can mask need more support to cope without catastrophic consequences, not less. Masking doesn't mean their autism affects them any less: it means they suffer the effects of the autism and the damaging effects of the masking on top.

It is unbelievable that there are still people who think that they can judge the impact of someone else's autism by how much it affects other people.

Four things.

1. My understanding of two council areas is that all children who have suspected additional needs of that level are given extra support and assumed to be autistic/ADHD without a diagnosis or the funding that comes with a diagnosis. Because the schools can't cope unless they do. This might not be the level of support required but it's something. You don't need a diagnosis to get a EHCP.

2. I thought that assessments were prioritised to a degree but one of the issues is the number of children with issues.

3. Even with it being prioritised, some kids have been on the list for a considerable length of time - possibly much longer than all the children with severe needs. They can't be left on the list forever because there's always others with greater needs. Therefore they may get assessed 'before' someone with more severe needs but in reality has been waiting for two years rather than one. You would never know if that was the case as a parent.

4. You do not know the extent of other people's issues. They can be different at home compared to school.

Is this a serious comment?

are you sure its most areas and how do you know this? nothing like that round here.

This. The queue is already triaged to exclude many people. It's shockingly under resourced.

Genuinely taken aback to discover they're available in my area (drop-in also seems to mean virtually) because we're generally behind on most things.

Thanks to PP who mentioned this!

Even if they don’t have the open group sessions, speech therapy doesn’t have years long waiting lists.

Yes it does, in many areas. There is a national shortage of SALTs.

I don’t know where you live but it dies in some areas. My son was diagnosed age 3, 22 years ago and the waiting lists were a year or more then.

YABU… Why is he waiting for an initial appointment at primary school?!? My daughter is 2 and we are waiting to see someone. Have you delayed seeing someone to see if he “grows out of it” and then hit the panic button and now expect to jump the queue. Why wasn’t he on the waitlists years ago ?

The problem isn’t other children getting medical care - it’s the waiting lists being too long and healthcare under resourced.

Save your anger for where it should be.

With respect there will be children that have even higher needs than your son ,,what happens to those children?

What precise help are you waiting for? A decent school provides a lot of help even whilst you are on the waiting list. You should also have been given a list of people that can help whilst you are on waiting list?

From your description you would want your child to skip the queue over my child because she goes to school, participates in most aspects of life, but she's a suicide risk and we have to keep medicine locked up and she self harms.

Her school already treat her as if she has had the diagnosis and she already accesses CAMHS counselling without having reached the top to the diagnosis list.

I will be honest having a diagnosis has brought no extra 'help' for us. Yes I think it's important to get there and get the diagnosis but there are lots of things that can be put in place before being diagnosed. My son had Speech and Language therapy, Elsa support and Ed psych input pre diagnosis, you can also apply for an EHCP which is arguably more important that the diagnosis as it legally has to be followed by the school

My eldest is see as 'high functioning' and on the surface does not seem like he needs a lot of support but the toll of masking has led to him trying to end his life age 10 and I suspect if you saw him on a good day he would be one you wouldn't consider as needing a quick diagnosis. It has to be fair for everyone, I don't believe that kids are just added to the waiting list without fairly obvious needs

In my area there definitely is a triage system at work.

In my experience though OP parents of other children with SN is where most of your support is going to come from so I suggest you reframe how you think of them in your mind. They are not the competition. Are you in any support groups? They don't normally require you to have a Dx.

Autism presents in different ways and because a child isn't disruptive or aggressive doesn't mean they are less important, typically girls are in this category. My dd was diagnosed at 2.5 years old, I know how hard it is at primary school to get the balance right but I insisted on full time mainstream as this was best for her. She's an adult now

My authority only provides speech and language therapy for those with swallowing disorders, they are " too busy" to support any other issues!

Without the assessment how will they know who is of greatest need?

Surely you aren't suggesting they who make the most noise about their dc get the fastest treatment

In order for that to happen there would need to be some kind of rating of needs system in place first, who decides who needs the help most? I absolutely sympathise with you but I don't think it's as simple as bumping some kids to the top of the list. Do you then need to take age into account, because there's more time to get things in place for younger children than for those hitting breaking point at secondary/exam level? There would need to be so many considerations that essentially it would be another assessment. It would also have to be the same for everyone or doctors/schools/parents would all just bump their own up the list. I don't think it's workable. I would say though that you don't need an autism diagnosis to access help for his sleep or his speech, so ask your gp to refer him for those now.

There is no help after diagnosis
.you're lucky to get a leaflet. It makes thinks slightly easier to prove.. dla claims etc but there's no help