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're incredibly lucky then.

After moving counties last year, I self referred to SALT in May for my (already diagnosed) autistic daughter.

She had previously had a few SALT sessions but she still had to wait.

She didn't get to go to school at all last year as all schools refused her and I didn't hear anything back so I contacted SALT again in December. We had been "missed" they said but explained that we still wouldn't have been seen yet due to shortages of speech therapists and long waiting lists.

But also by that point, my daughter was accepted into a SEN school with an on site speech therapist so we were then discharge from the waiting list.

Ours is not an unusual case. NHS SALT is a joke.

If people.can afford private speech therapy, its probably the way to go.

All the children in my school who present as you’ve described your child have been seen by paediatricians as pre schoolers. The referrals are frequently made by Health Visitors, or GPs. The only children with such high needs who aren’t already under a specialist are those who are INAs and new to this country.
Is there a reason why your dc still hasn’t been seen?

Yanbu to be upset at the wait for diagnosis but yabu to want the sort of system you propose.

My son waited 2yrs for assessment. High masking, no issues at school. But huge issues at home with meltdowns, self harm, sleep and eating. A needs based assessment would probably end up going on what the professional already involved (e.g. school) think which wouldn't be fair.

Also things can change significantly during the wait for assessment. You'd have kids being bumped up the list constantly and other waiting many more years at the bottom of the list.

I think the bigger issue is that diagnosis often actually comes with absolutely no help. My son was diagnosed and discharged with no meaningful support (some leaflets and a short parent course teaching me nothing new).

One option is to apply for DLA/CDP (depending where you live) and use that money for private services e.g. Speech and Language therapy.

This sounds unusual in that if his needs are so high on hitting primary school, why wasn't he picked up earlier as a baby/preschooler and in the system much earlier?

He won't have had normal babyhood development; kids don't just suddenly develop autism (although less severe cases can and do fly under the radar until school)

It's a long time since my kids were little and i knew they had cut down (or is it cut out?!) Health Visitor checks but it's a pity your DS wasn't in the system long before starting school.

It sounds like your DS's difficulties would have been very apparent by 18 months - if speech wasn't developing, then he wouldn't have been playing well either. And I bet his behaviour was quite a handful throught his pre school years.

There's just so much pressure on the system. Have you checked out autism supports in your area? In many areas, charities have set up groups to help ASD families access support.

LOLNO.

The entitlement to say this, bloody hell.

Any child who is deemed to need assessment for autism by a professional is being affected day to day and deserves their place in line as much as any other child that needs and assessment.

It really does, where are you getting your information from?!

There is no help. ASD diagnostic services are diagnostic. What you'll get is "Yes, he's autistic. See you later."

Apply for an EHCP now. He doesn't need a diagnosis, and it won't change the outcome if he does. One of my girls is in a specialist school with no diagnosis - she's been on the ASD waiting list nearly 2 years. She had no identified conditions at all when I applied for her EHCP. She was 'just' finding it increasingly hard to attend school. But because the school had tried so many things to help her, it was obvious that she had needs.

The waiting list will make no difference. DD3 has OCD. She waited on a waiting list to be told that. Now she's on a waiting list for group therapy, even though they know she needs 1:1 treatment for the OCD, because everyone has to have tried group therapy first. So she'll wait a year, attend an online course, then they'll decide to put her on the waiting list for 1:1 treatment for her OCD. In other words, there is no help.

My son was referred in 2021, had initial assessment in 2022 and actual speech therapy appointments were in 2023. I’d consider 2 years to be pretty long

SALT is an entirely separate service from the one that provides assessments for autism in my area.

Somehow sorting the list according to need would have to involve some sort of triage system which would end up with very high masking but still not coping children (essentially the majority of girls) continuously pushed to the bottom of the list.

We paid privately in the end, although this was still 5 month wait. We said no to some breaks away over the summer to be able to afford it.

I would look to see what private options there are in your area and do anything you can to do save for it. We had to pay a £100 deposit to get on the pvt waiting list and then cut back to save aprx £200 a month so that we could afford the £1200 by the time they came to the top of the pvt list.

Where you are going wrong is thinking that a diagnosis is a magic wand that will sort your ds's difficulties out. We thought so too. Infact what we needed was proper support from the education system which is basically needs based rather than diagnosis based. I would my energies into fighting for this e.g. requesting assessment for an EHCP which will open up doors for extra support / change of school placement rather than just a diagnosis.

The downside is that the higher functioning children with suspected autism would be constantly pushed back when new (more severely affected) children join the list and get prioritised. I agree it's not great that you're having to wait, such is the state of the NHS, but other children shouldn't be potentially delayed for years as a consequence of "priority".

You are unlikely to get help after diagnosis.

As others have said they'll give you a diagnosis (or not) and maybe a few leaflets and that will be it.

However if you are in England then you have a school problem.

They are not permitted to insist you pick him up and they do have to meet his needs diagnosis or no diagnosis.

You will need sharp elbows and some help
To make them stick to the law though.

Does he have an EHCP?

On your basis tho the children with lower but yet still needs would never get to the front of the line as someone new would always come along. There own issues possibly getting worse as the right structure / help isn’t in place.

Also untill they actually meet and access they don’t know who has higher needs. They won’t read your file till it’s time then, some cases will be over played and others underpaid.

Your frustration is because it’s a long wait for your child who needs help. Every parent on that list would wish their is first and could come up with a way theirs needs help now.

YANBU, but I think it works that way already? My son is 9 and out of the babies we met at baby group, the ones severely affected were diagnosed long before they even reached primary school. The process started either at their routine age checks, or at nursery where it was obvious to everyone that something was up.

The process tends to be quicker where the outcome is obvious.

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

It does in my area. 18 months - 2yrs.

We had to wait approx 10 months in our area for ST on the NHS. No drop ins available.
it varies hugely depending on area.

Some LA's do prioritise LAC, children out of school and those in camhs. It might be Cornwall? TBH it's not a great system.

A diagnosis is just a diagnosis. Yes it can provide some additional support in some areas, and possibly open up ASD specific schools, but not always and places are so limited.

School should be supporting based on presenting needs. Apply for an EHCP if your child's needs are significant.

^^ this

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

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.

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

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

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

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.