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

Why is he waiting for speech therapy? Most NHS areas have drop in speech therapy group sessions which you can just show up at and they get an in initial mini assessment and then you’ll be booked in.

My kid has been on the wait list of autism for three years, he got speech therapy within a couple of weeks of being referred. Why are you waiting?

You could also pay privately for his assessments. It’s just the state of the NHS. It’s the way it is.

Being high masking puts a huge strain on the mental health of these people. Just because the struggles aren't visible to you doesn't mean they aren't suffering and struggling significantly day to day.

Where is your intimate knowledge of who is on a waiting list coming from?

I don't know. I see your point but, at the same time, you can't be autistic without it affecting your daily life so all children do deserve to be seen equally. I think it's more the case of the waiting lists being a disgrace than children with more severe autism needing to go to the top of the queue. The queue shouldn't be there (or not of any length anyway).

I'm sorry for your daily struggles and hope you are going to be seen soon.

All children deserve to be seen & get a diagnosis unfortunately getting first appointments is joining a waiting list.

I don't think there is a fair way of doing this, how can anyone judge children & parents struggle?
The system is f-ed and there isn't a fair way to allocate the resources available.

Why is he waiting for speech therapy? Most NHS areas have drop in speech therapy group sessions which you can just show up at and they get an in initial mini assessment and then you’ll be booked in.

This doesn't exist in my area....

Just because the children you refer to attend school "normally" doesn't mean that their autism isn't affecting their lives in many other ways that you don't see. I'm sure every parent would like their child to go straight to the top of the waiting list but this isn't how it works, nor should it.

How would they know which children have more difficulties without being assessed?

Melatonin may help with sleeping issues but hard to get it prescribed and you may need to push hard to get it. It has made a difference for us.

Because there are many children who appear to the outside world to be attending school normally my ds difficulties are not openly talked about to other parents but are not coping.

my dd on the other hand will probably never get a referral let alone a diagnosis on the nhs so I have to save up for a private diagnosis

its not fair what your going through nor is it fair what either of my children are going through. The nhs is broken but I'd much rather have it than not.

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

I sympathise OP, and do think there should be some kind of weighting according to perceived need. I say that as a parent with an autistic child in mainstream school.

Most autistic people are affected in their day to day life. I don't know how you'd choose those to go to the top of the list without assessing?

You can't be autistic without it affecting your everyday life as 'limit and impair everday function' are part of the criteria. You will also not necessarily see how it is impacting somone who is managing school. They may also be self harming and screaming all night.

This is a bit idealistic, but support is supposed to be needs led so if your son needs more support he should get it regardless of diagnosis (I know reality is different)

More practically can you phone twice a week and ask if there has been a cancellation. That's how we got a same day appointment about a year ahead.

Also if your education placement is at risk, not due to being to anxious to go, but due to the school saying can't meet need, you sometimes move up the list quicker.

My DS is very similar. I was being pressured by schools to remove him while unable to get the medical evidence needed to get him a specialist placement via the NHS. We have spent tens of thousands on pediatrics, SALT, psychologists, OT, etc. NHS autism pathways are a disgrace.

YANBU at all. It’s a hard road. 💐

Not in our area either.

That system would be totally unworkable.

Then people would be complaining that a parent lied to get their kid seen quicker and reporting each other.

Or the kids who aren't perceived to be struggling enough will just never get seen.

I understand your frustrations, but you're angry at the wrong thing, it's the last government fucking the NHS up to this point, not parents, just like you, waiting to have their kid seen that's the issue, they shouldn't be punished.

This would mean adding a pre assessment, by the team that do the assessments, into the process. To see who is impacted more. And that won’t be fair on everyone. Not everyone can articulate the difficulties they are facing.

That will slow everything down for everyone.

I appreciate your life is being heavily impacted. And you may see other people as not as heavily impacted. But you don’t know that.

A mild form maybe easier to help meaning the child can then earn more and make good relationships as an adult to help the country and pay tax for NHS. A more serious form may mean less potential to earn even after help. Hope your ds is helped soon

That sounds really tough OP and I totally understand your frustration. My understanding was that referrals are initially triaged to check the child meets the criteria for assessment, do they not (or could they not) use that as a basis for which children need to be fast-tracked?

In our area you can only get on the cahms waiting list if you’re in crisis. Based on your criteria everyone one would be at the top of the list but obviously that’s not possible.

You don’t need a diagnosis for an EHCP assessment. Refuse to allow school to enforce a part time timetable and get the process of an EHCP assessment going. Even with a diagnosis from the paed nothing will change in terms of his support needs in school without an EHCP.

Who decided that your son could only do half days? The school? He is entitled to a full time education so this isn't good enough. A diagnosis is irrelevant, support should be given based on his needs. Do not let the school informally exclude him every day by getting you to come and pick him up. If they want you to come and get him at lunch time then they need to go through the proper process to exclude him for the afternoon. While you agree to pick him up every afternoon they don't have to put anything in place for him to be able to manage the afternoon - or to get involved in getting him a place somewhere more appropriate

Your problem is a school problem IMO not a waiting list problem. DS got diagnosed 10 years ago and was not offered anything by the NHS as a result of his diagnosis so I wouldn't base all your hopes on diagnosis. It may not magically open all the doors you'd hope it would. Support should be based on need.

The problem with this idea is the “less severe” kids will constantly be kicked to the back of the queue. Why should a kid who needs help and is coping currently be denied help?

The solution is to fund services correctly