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

Absolutely agree with you.
Of course there are varying levels, how can it possibly ''all be the same''.

I do think @orangeleopard 's son should be triaged and hopefully should get some help.

There is a young autistic adult locally who needs two young, physically capable 'carers' to manage him whenever he leaves the house - He's so fast and strong, no way could just one person manage him.

They have to persuade and coax if he breaks free and ends up in someone's garden, or bolts up a road or escapes from a car before they have done up the seatbelts.

This is completely different to other forms where one can play an instrument beautifully and do very well academically.

My heart goes out to you. It’s often when you need support that it becomes apparent just how broken the NHS is and it’s so hard watching your child struggle while holding all those emotions with no reserves, due to the toll that your child’s unmet needs have on the household. I agree with others that it’s starting to really look at what his needs are and trying to address these. Speaking to school about getting an EHCP in place, seeing a GP re his sleep and medication, looking at some of the speech therapists on Instagram, making as much use as possible of any support groups for parents and making use of social media groups for support from other parents who have been dealing with similar situations and can offer advice as an official diagnosis won’t be a magic bullet. The support he needs will be based on his presenting needs not just his diagnosis, school need to be providing more guidance and sign posting if they are struggling.

Their comments aren't ignorant though, they just disagree with you. There is scientific evidence to support that autism can have different levels of severity and that ASD Level 1 does exist. You can of course find some evidence to contradict this but this is what I mean about the science being incomplete and not totally understood.

If you don't accept that different levels or severity of autism exist then you are effectively saying that autism is binary. Someone is autistic or they aren't and we shouldn't be trying to distinguish between them any further to allocate support and treatment. Do you genuinely think the science exists to back this approach up? What do you say to those people that don't quite meet a threshold? Are they fundamentally different than the 'autistic' person than the person that just meets it? How do you legislate for the impact of subjectivity?

I was merely pointing out that different opinions can exist (and that is all you have, an opinion). The science isn't how you present it and you have no right to call someone with an opposing legitimate opinion 'ignorant' or to suggest that definitive science exists to disprove what they are saying. You are trying to police the thread because you are trying to shut down debate.

As in, ‘are you waiting for tests or assessments?’

It’s just context. The important thing for a DLA claim is the amount of support a child needs compared to what would be expected for a non-disabled child of their age.

You’ll need to be able to evidence need, for a DLA claim and a diagnostic report can provide some of that evidence but so could one where a diagnosis wasn’t given.

I agree but the pp isn't wrong I'm on various DLA Facebook groups ,and daily I see people trying to put in claims for very tenuous reasons ,no they dont
get anywhere with then but it goes clog up the system for genuine claimants.

Everyone thinks their kid should be the priority.

I'm currently feeling peeved that 6 years after referral, we finally have an appointment and DS, now a young teen, doesn't want to know.

OP, I you are clearly at the end of your tether but I think you are wildly overestimating the help you are likely to receive post diagnosis. There will still be a lot of waiting around for someone to step in an offer advice (and that's all they can offer in a lot of cases as there is no cure for autism). My best advice to you at the moment is to take matters into your own hands and proceed as though you have the diagnosis.
Contact local support groups so you have access to other parents in a similar position. Look online at strategies to manage sensory needs and behavioral needs. Talk to school and ask them what they are doing to support him aside from reducing attendance. Private diagnosis might be financially out of reach, but you may be able to manage a private consult with an OT for some clear strategies to support him. Honestly, you will have to do this leg work anyway once you get the diagnosis. Start now, learn with your child and with a lot of trial and error, you will be able to support him much better.
Online Community (autism.org.uk)

OP, I you are clearly at the end of your tether but I think you are wildly overestimating the help you are likely to receive post diagnosis. There will still be a lot of waiting around for someone to step in an offer advice (and that's all they can offer in a lot of cases as there is no cure for autism). My best advice to you at the moment is to take matters into your own hands and proceed as though you have the diagnosis.
Contact local support groups so you have access to other parents in a similar position. Look online at strategies to manage sensory needs and behavioral needs. Talk to school and ask them what they are doing to support him aside from reducing attendance. Private diagnosis might be financially out of reach, but you may be able to manage a private consult with an OT for some clear strategies to support him. Honestly, you will have to do this leg work anyway once you get the diagnosis. Start now, learn with your child and with a lot of trial and error, you will be able to support him much better.
Online Community (autism.org.uk)

@User645262 we were told around 3k-4k for a private assessment and possible diagnosis 😳 I don’t think anywhere will do it for ‘a few hundred pounds’

so where would my son sit on your new scheme?

He can 'sit on mumsnet merrily typing away, processing and using language' but he can't be left unsupervised, can't feed himself, never sleeps, is an elopement risk, needs help washing and dressing, has zero sense of danger, doesn't eat without prompting, needs reminding to visit the toilet, has an ehcp, attended special school, didn't toilet train until he was 6, has violent meltdowns, is selectively mute, won't/can't use a phone, can't tie his own shoelaces.. but HEY, he can have a conversation with you (if he decided to talk to you and you don't mind monologuing or his echolalia, and vocal ticking) so he must not be on the 'profound' list, right?

Our area has an open group one/drop in or you can speak to a Hv or your nursery or preschool, or parent themselves can refer.
But the result is the same, referred to a list about 1-2 years long. My friend waited around 18 months and paid for some private sessions in the mean time.

I don't think the groups are set up to get your child the maximum amount of DLA but to support you to advocate for your child's needs as best as you can.

There are some questions that are purposefully written really ambiguously, for example, surrounding mobility.

If your child has no physical disabilities you might be tempted to just say that this does not apply to them, but even though the question doesn't give any leads its the right space to explain why if you have an eloper, that they would fall under the virtually unable to walk category, because they require restraint or support aids like a pushchair, and it's also the place to explain why this is different to your child's same aged peers.

If I had answered those questions taken at face value, my sons needs wouldn't have been taken into consideration because the virtually unable to walk criteria is not outlined in the booklet. It's specifically levied towards physical disability.

That's why these support groups exist. To explain the points system so that if it applies to your child you can advocate for it.

And DLA, just like PIP, requires a substantial amount of evidence to be sent and if you don't have the evidence to back up your claims you will probably not score the points on it any way, because it's a barrier against fraudulent claims. I had to send in my sons EHCP that explains the schools, any professionals involved, and my observations surrounding need and frequency.

It's easy to see these groups as ways to play the system, but in actuality it's not really that easy because of how beaureacratic everything is and has to be evidenced over a prolonged duration of time.

You don't have to wait for pushing through an EHCP with the school, it's needs based not diagnosis based, and they legally have to action it as it is to determine whether the child needs additional support, not a guarantee of additional support.

Melatonin, if required, can be pushed through the GP, although it is very hard work.

DLA isn't diagnosis based either.

My daughters school, were reluctant to be named to take her as they do not have the resources despite our ECHP and funding awarded for additional support. They were very surprised we had managed to get this far without a diagnosis as they already have a child in her year who needs additional support that does not have an ECHP or funding currently, which they have to provide additional support for.

We have finally done the autism assessment and now awaiting everyone else to do their bit, before a decision is made. And we have a date for ADHD assessment which we've been told cannot be done before they are 6 years old.

Realistically the diagnosis wont change much, but alot of services such as respite is diagnosis based, and of course medication if ADHD is disagnosed.

Please push for the EHCP, and push with your GP for melatonin. You do not need diagnosis for either and the EHCP will secure the best suited school placement, and speech and language.

I get you though. My daughter self hurts in frustration, meltdowns that last several hours, selective mute at school, poor speech, poor sleep. It's tough, I wish you all the best.

@orangeleopard ring and ask to speak the secretary of the paediatrician you've been referred to.

Explain to her what you've explained on here and ask her to put you on the cancellation list.

Other than paying privately, that's all you can do.

Sadly, once you have a diagnosis nothing changes. There is so little funding or help.

But you don't need a diagnosis to access a SEN assessment by your LA as it's needs lead.

Does he have an EHCP? You can apply yourself but do talk to the SEND at his school.

I'd advise you to contact IPSEA or look at their website. It is really helpful to know your legal position when trying to get support in school.

But again this is true of lots of conditions and shouldn't be a reason why we can't distinguish between the severity of a condition at a given time.

There seems to be extreme sensitivity around autism because lots of people have embraced it as part of their identity. As I've written lots of time on this thread, the science in this area is incomplete and poorly understood and I genuinely worry that it is giving people a sense of false certainty that is really damaging.

@Nosleepforthismum DLA requires supporting evidence, everything I wrote about my DS had to be backed up by professionals at his school who see him every day. I also added his echp, school reports, paediatrician reports etc. you can’t just write whatever you want.

That's not really a conversation though is it ?
It's not functional speech.

Well I haven’t put a claim in so I’m only going off comments and information from others but I’d have thought that (if I was an arsehole) I could say DC copes at nursery and then has epic meltdowns at home, doesn’t sleep, doesn’t eat etc. I don’t think they’d be able to verify with others if you said you had a child that masked.

This with bells on.

I know it's frustrating OP and in an ideal world all autistic children would get the support they need when they need it. But just because some kids look like they're coping, the lack of diagnosis and support can contribute to big mental health problems that then explode in the teenage years (taking up space on other waiting lists that could have been avoided if they'd been seen earlier).

I think we can all agree it's shit

IP, I really feel for you, and absolutely feel your child should be seen ASAP. But this should be the same for all children who are struggling.

For context, my child is 9. He appears to cope in school, and doesn't cause problems for his teachers as he masks and never speaks up. He had meltdowns at home, starts trying to get out of school on a Saturday night by saying he feels sick, and if he's sick he'll have to have Monday off, and struggles to function generally. He has severe anxiety, has run in front of cars and is not achieving what he should be academically with the right support. He doesn't sleep, but nobody else is aware of that really, as it only affects us as a family.

With the right support, my son could probably functions reasonably well, but is still in a waiting list at 9 and slipping further any further behind his peers. We are currently considering removing him form school because it's not working. His life chances are being severely affected by the long waits, so I struggle with the idea that he, and other children like him should be made to wait even longer (three years at present). But equally, I absolutely don't think you should be waiting OP. We are, however, all in this together, and it just wouldn't be fair for one group of children to be pushed down the wait list to help another.

I say this as a mum of a NV ASD 4yo who is extremely high needs and in a fully specialist school. You can imagine the journey and intense fight I’ve been through to get is here.

If your son is still waiting on the initial appointments he’s not autistic on paper. It doesn’t mean he’s any less autistic in person but the argument you’re making is essentially ‘a high needs child with suspected autism’ should be put to the front of the queue and whilst that might seem pedantic it’s actually very important because whilst yes I do agree that there should be a way of screening urgency and importance to offer out appointments to some sooner than others (much as they do in A&E with their priority levels) it’s important to remember that the number of ‘we think they’re autistic’ cases out there is HUGE and autism (as I have come to realise from my son starting his specialist school) is actually just one of the MANY MANY childhood disabilities both physical and intellectual which require very urgent and involved paediatric attention.

Do you think your son should be prioritised over those with cerebral palsy? Rhett syndrome? Down syndrome?
I think what you want is a way to prioritise urgency and shaft the less serious cases down the waiting list to make room for your son, which is understandable but again that system, due to the volumes involved, would mean the lower needs kids simply never got seen or dealt with.

The NHS just isn’t fit for purpose anymore (I’m also married to a doctor) x

I have 3 autistic kids. One so 'severe' he has no school place as no setting will take him. But I don't think he should be expected to wait less time than my dd who masks at school and pays a heavy price with that. I was a masking girl and it gives you lifelong mental health challenges, those who act out like my boy struggle at the time but he will get support and his struggles while life long won't impact his mental health in the same way. Why should my dd be sentenced to a life of mental health struggles just because she can hold it in and direct it at herself?

Anyone who knows an autistic child, as opposed to a child 'on the spectrum', with Asperger's or similar, will realise what a really big disability it is and how it takes its toll on parents/families.

I know it's a different type of disability from the classic autism, but many kids with Aspergers are truly disabled too and it's important people realise this.

My DC with Aspergers has MH difficulties to the extent he will probably never live independently. I think people hear Aspergers and think of bright, quirky kids who'll do well even though they're a bit socially different. That's sometimes the case, but for others the associated anxiety and other MH difficulties, self-harm, lashing out, breakdowns and so on can be truly horrendous and deeply impact the whole family. I think many people don't realise this.

With Aspergers there is no intellectual disability but there are often associated learning disabilities like dylexia which, combined with severe anxiety, can make schooling fraught. Many drop out or attend on limited hours, meaning a parent often has to give up work too to care for their child as in our case. Either I or my DH have to be on call always...no more than 5 mins away. There is no possibility ever of meeting up with friends together in our local city, for example. That just can't happen. It is a very different and limited type of life now for us. And even more so for our DC who is deeply affected.

The Aspergers type of autism is a very real disability for many people @LBFseBrom. Please don't underestimate how serious it can be for those who have it and for their families.

But you would need evidence to back you up ,yeah there are loads of people that try with no evidence but generally they don't get anywhere .

I completely agree OP. Sorry that he and you are having such a hard time 💐