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

There's a plethora of reasons parents won't seek assessment until primary school and even beyond that, berating a parent for not doing so is a different matter to objecting to 'jumping the queue'. And no, it's not always because they presume they'll grow out of it, no need to bring more ignorance into an already ignorant thread.

The spectrum has widened to such an extent that it has essentially become meaningless, so yes. Whole system needs an overhaul.

There is no direct help from diagnosis and its not a magic wand.

but the diagnosis we had was helpful because it also added another condition in which i didnt know about before which changed how i dealt with my son and he has medication.

As it happened my son is also now at a school which does require a diagnosis but I appreciate that is unusual.

I'm not trying to make op feel bad as they havent got a diagnosis. And it is right that support is supposed to be needs led. It's also right that fighting for an ehcp is the way to go.

But it is a real shame that people wait so long for a medical diagnosis.

Different trusts/areas do things differently.
In my area there are no drops in.
Children are waiting years to be seen by SLT.
It's an absolute disgrace.

It's not a magic wand but it is a quasi-magic key to the increasing number of services and settings which are now barred to a child without a diagnosis.

Attending school 'normally' was deeply traumatic for me as an undiagnosed autistic child. I wish you and your child well but you have no more right to services than anybody else.

It's not entirely clear what service waiting list you are referring to - do you mean waiting for a specialist assessment for suspected autism? These clinics are overwhelmed by demand, that's the problem - and there will be many children with significant everyday problems waiting. A referral will be urgent or routine - problem is when everyone is urgent the waiting time balloons out.

As others have said, a diagnosis won't really open and doors to you that aren't already there. You can apply for DLA now and from the sound of it you should get it, you can apply for an echp now and you should also get it. Once you have DLA you can ask for a carers assessment from your local council and they can help with some respite for the family. You can also ask for referral to a sleep clinic from your GP and they can assess whether medication for sleep will be helpful.
I am not saying any of these things are easy to get sorted out but if you have a child who is already clearly struggling then gaining an official diagnosis won't actually do much in terms of helping you to get more help.

Most people with children with asd don’t have the money for private assessments!

@LoveSandbanks

Most people with children with asd don’t have the money for private assessments!

Is it only low income families affected by autism?

OP, you don't need a diagnosis to access help. And conversely a diagnosis doesn't automatically open up a vault of assistance. That was my error too.

So, start identifying what help and support you and your child need.

1. DLA - based on need. Take your child's worst day, and complete on that basis. Type up supporting information for each question on what actually happens.
2. EHCP - based on "may" have a disability and "may" need a plan. If school cannot use ordinarily available provision to offer him full time education, then he needs a plan. If school won't apply for you, apply yourself. Contact your local SENDIAS for support.
3. social care - based on need. Look at your council's Local Offer page and there will be signposting to 'Early Help' or similar - family support workers who can help identify available support
4. Social prescriber - ask your GP surgery if they have this. It's someone who can help direct you to appropriate services. Mine sent me all the forms for Right to Choose.
5. local charities - again, will be on Local Offer website - based on need

I don't underestimate how challenging your life is OP. But please don't assume that just because my child masked heavily through primary school that we didn't also have a need for support. By the time it became obvious that my 'quirky, shy' daughter had more going on, she was suicidal.

NHS and LA services have been chronically underfunded for years, but the Covid pandemic has made things much worse. A perfect storm of greater demand and less supply.

That is slightly misrepresenting how autism actually presents though. Most autistic people have 'spiky' profiles- they have big issues in some areas and less so in another. The most apparent 'severely' autistic children usually have learning disabilities (or other conditions) on top of the autism.

My son's biggest issue is anxiety. But because of this he comes across as quiet, compliant, well-behaved and easy to manage at school. When he gets home and feels safe he can explode in self harm and meltdowns etc. His anxiety comes from masking, struggling with sensory issues, not understanding social aspects etc.

He wouldn't necessarily score very highly in terms of autistic children's scores on typical autism questionnaires. But if you look at the outcomes such as anxiety he would be through the roof.

My cousin on the other hand would score very high on a traditional autism assessment but is actually very content and relaxed. He is in his own world and can't communicate but no issues with things like self harm, eating, sleep etc. Of course not being able to communicate will need a lot of support at school.

I would say both have high support needs but couldn't be more different.

Makes sense in theory but then there will always be more children coming into the list therefore some children may never get seen as other kids keep going above them.

I'm afraid this simply isn't correct on several points. Melatonin, which is what will most help many autistic children with sleep difficulties, can only be prescribed on the NHS by a consultant to a child with a diagnosis. GPs can't prescribe melatonin. A diagnosis is increasingly being put in place as a requirement to access specialist settings in order to cope with demand.

It hasn't "widened". The autistic spectrum isn't a scale of severity between "autistic" and "not autistic" in any case, as your comment seems to imply. The spectrum is a way of guaging the relative difficulties in different areas of an autistic person's profile of difficulties.

What has happened is that the condition was hugely underdiagnosed for decades because of sexism and because of the kind of ignorance littered throughout this thread claiming to be able to ascertain how "severe" someone's autism is by whether they mask it in public or not, and that now - thankfully - at least neurodevelopmental paediatricians are better informed therefore do diagnose people who are autistic but previously would have been left to suffer and have their lives ruined.

I don't know if this is helpful to you OP, but you can apply for DLA without a diagnosis. DLA opens up a lot of things which might be helpful to you. Carers allowance for example. Disability blue badge. Discounts. Queue jumping or quiet areas at family days out. You could also use some of the DLA to get a private assessment and speed up the process. Or you could use it for play therapy, or neurodivergent friendly activities on the days he isn't at school. Saying that though, I don't know anyone with a diagnosis who has any support due to a diagnosis. None of us are having an easy time. Sometimes I wish my daughter wouldn't mask at school so that she could have the part-time timetable and more support would be put in place. We were straight at the top of the queue with our assessment for some reason but still couldn't get a diagnosis as the assesment was done at school where she doesn't feel safe enough to be her real autistic self and the school didn't want to be honest about the things she does struggle with. She might be good at school but it's a battle each day to get her in, and it's a battle each day after she comes home and lets it all out. I honestly don't think there are kids with worse or milder autism, it's just displayed in different ways. Unless there's some kind of other learning disability going on there. İt's crap for all of us but we have to make do with the charities and organisations there are out there. Definitely apply for DLA if you haven't already and look at different schemes out there- family fund for example.

Sadly even with a diagnosis children are frequently denied access to most of these and it takes years of complaints and/ or tribunals to get anything in place. It is disgraceful.

I disagree, and I know for a fact that people in services do, too.

I work in a similar area that does work a bit like you describe.

The referral is triaged and you are allocated to a pathway with a set waiting time - 4 week wait, 8 week wait, 16 week wait, say.
Then the waiting list is sorted by date of the end of your waiting time.
So more urgent cases do go ahead of others that are already on there.

It works very well when there are enough staff.
But once people start missing their appointment-due date because we physically can’t offer enough appointments, it snowballs quickly, and the waiting-time limit gets pretty meaningless.
It will show that nearly everyone on the list should already have had their appointment, but they haven’t.
It will show that a highly urgent case referred now ought to be seen by mid October. But they won’t be because the highly urgent cases from May are still waiting, and so are the urgent cases from March, and the routine cases from last December.

Once they’ve been on there a while, they really need to be retriaged anyway - but that takes up extra time too.

Throwing more staff at the problem doesn’t necessarily help, if you need a room to carry out appointments, and there isn’t an extra one available.
Or you need a specific assessment and there aren’t enough to go round.

Once you lose control of the waiting list, it’s really, really difficult and really, really expensive to get control again, and that’s what we’re dealing with now, across all services.

You can buy melatonin online though. I started using just a tiny fraction of a gummy on my DD a few months ago and it's honestly changed things. Apparently it only works if they actually have a melatonin deficiency, so it seems that it was needed all long.

I don't think it's fair to judge people.who don't realise early that there are signs. I never considered it with my eldest as he was my first child, he was a bit quirky but seemed to be hitting milestones, it only became obvious when he started nursery and the social development delays became apparent. Also strongly suspect me and dad are Autistic so he didn't seem 'different' to our standards.

In our area a referral has to come from school / nursery or health visitor so if its missed at a two year check then it could easily be missed until that child starts school

DLA can be awarded without a diagnosis. That can be used to pay for private assessments and access support. It is not means tested.

My DS did not get a formal diagnosis til he was 13 (it was an NHS one) but he was on DLA from aged 3yrs.

I said earlier in the thread that i am surprised a child with such high need has managed to get as far as primary school without being picked up in the pre school years - is this due to HV checks being scrapped in some areas?

Certainly my DS had support put in at nursery level. And, before starting education, he had a pre school home visitor.

Just because a child can attend school "normally" doesn't mean their lives are not severely affected 🙄

Unfortunately all children waiting to see a paediatrician have needs affecting their daily lives otherwise they wouldn't be on the waiting list. It is dreadful that the waiting lists are so long and you both are suffering as a result.

The waiting list is put into categories for assessment so some will be more urgent than others but likely every child has quite a long wait.

Exactly. My niece is very much like me and I'm autistic. She's 6 and has opened up to her mum (who is great) that she often wishes she wasn't here. Both of us are intelligent and she'll probably excel at school like I did, but I've spent a lot of my life suicidal and I desperately want her to avoid going through that. Hearing that she already wishes she didn't exist broke my heart.

Just editing to add: I'm also very sorry for your child who is also clearly suffering a lot. Autism is so hard.