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

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

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.

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

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.

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 ?

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.

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.

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!

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

Is this a serious comment?

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.

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.

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.

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.

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.

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.

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)

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)

Yes I don't know what it's like now ,as my son is 14 but he was diagnosed at three after 7 months of assessment, s ,it was blindingly obvious he was autistic, and he also has severe learning disabilities,,I appreciate it must be difficult when it presents in an outwardly less extreme manner and diagnosis takes longer.

Appreciate you are struggling, but you know nothing of the struggles of others on the wait list.
A diagnosis is not a magic answer, its unlikely that your or your sons life will suddenly change once you have it
Your son can get an ehcp for support in school without a diagnosis. I'm my daughters year 1 class there are several children with EHCP's but still waiting for a diagnosis. The school commissions a speech therapist to see them via the sen funding. You can apply for an ehcp yourself, have you tried this?
You can also apply for DLA without a diagnosis, and could use this towards speech therapy

Of course YANBU.

I always find threads on MN about autism frustrating because they often present autism as some binary condition where science can definitively prove that you either have it or don't. In reality, no such test exists and we rely on relatively subjective assessments where arbitrary thresholds have been created to 'diagnose' people. You will always have people that have much higher 'scores' than those who just meet the criteria and logic would suggest that they have more severe cases of autism, but autism is one of the only conditions where people get offended if you start mentioning severity or if you point out the obvious fact that autism some people are clearly more impacted by their autism than others.

Your child is obviously struggling hugely and should be prioritised over someone that seeking a diagnosis for their child as they have an inkling that they may have autism. The urgency of your case is obvious and to pretend otherwise is cruel.

@Ivehearditbothways I would like to address your comments on two points.

NHS SALT in my area discharged my DS despite his very high level of speech and language need because he was too severely delayed. They only work with children with speech needs. Because his needs are primarily language he was deemed 'not ready' for direct speech work and therefore discharged from their care. There is no drop-in or self-referral service in this PCT and I think your area may be quite unusual in this regard.

Paying privately for assessments is not as straightforward as you might think, even for families who can comfortably afford the cost. It is difficult to get a reputable multidisciplinary private assessment for a child under the age of seven. Even if you manage to secure one, local authority panels are sceptical of private assessments and give NHS assessments much greater credence in awarding funding and support. LAs may deny this but it's fairly well-established amongst professional networks.

@orangeleopard I am so sorry that you are struggling. My DS is also awaiting assessment and although he has an EHCP we have hit a brick wall with accessing certain support and specialist places which are only accessible to children with diagnoses. I know this is a drop in the water with everything you are dealing with, but about a year ago I started giving him a low dose 1mg melatonin gummy at bedtime. It doesn't help him to stay asleep but it does help him to sleep at a sensible time and has made a huge difference to both his welfare and mine. I order them online from the USA; on the NHS they can only be prescribed by a consultant with a diagnosis.

Can be really hard to get a referral in many areas when a child is young even when it’s obvious there’s an issue

I forgot to add that in our area they are now much stricter about letting people onto the waiting list. In the past most referrals were successful but it seems they are rejecting Hugh proportions of referrals currently.

I'm in an ASN group (open to anyone with or without diagnosis) and numerous have been rejected recently. I've met some of the kids and it's blindingly obvious they are either autistic or something similar. But some have taken the rejection as a sign their child cannot be autistic and then feel awful that they must instead be bad parents. Some have left the group. It's horrendous to treat people like that to try and get waiting lists down.