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

1. The system is broken, don't let them win by having parents fight amongst each other. We have to support each other. Yes, your situation is difficult, but it's not a race to the bottom, and you would be quite disheartened, and rightfully so, if another parent came along and minimised your problems by suggesting it's not as bad as they've got it. There are parents of disabled children who would love to be in your position, but that doesn't mean you're not struggling too.

1. Diagnosis makes no difference. It merely validates things. You are setting yourself up for major disappointment if you think it's going to open a load of doors for you.

1. Have a look at right to choose. My son was diagnosed within 2 months of the referral being received last year, although I believe wait times are a bit longer now, but still much quicker than NHS.

1. Struggles with or in school need addressing through an EHCP. Diagnosis will make no difference. If needs were better met in school, your home life would likely improve.

1. You will need to fight and fight hard for an EHCP. If you can afford it, you need to get private EP, SALT and OT assessments and you will need to go to tribunal to have weekly OT/SALT adding to the EHCP and if applicable, to get a place at special school.

The EHCP is the priority. This will make the biggest difference to your life. Join some local EHCP groups and be prepared to fight.

Good luck.

ETA: My points were numbered but MN didn't like that!

by that logic, the less severely affected would never make it to the top. The waiting lists are an issue. My (in your classification severely affected) child is on a 5-6 year waiting list. The waiting lists are the issue, not children who need help but present less severely. Really shit trying to pin children with additional needs against each other. It's not a race to the bottom. All deserve help. You should be angry with a system that throws children and families like yours under the bus in the name of saving money, not with other kids.

There’s so many benefit scammers “fighting” to get their kids on SEN plans to get extra money it causes backlash for those in need.

The school SENDCO should be providing support regardless of a diagnosis. My sons old primary, my nephews school, and my friends kids school all started providing SEN support when before they got their diagnosis. In fact, the evidence from SENDCO helped a lot when getting through the system, as we had a lot of multi agency meetings with speech therapist (although the speechtherapist appointments were few and far between, I ended up chatting to a SALT from Canada online and devising my own strategies), educational psychologist, CYPS, school SENDCO and written input from neurological paediatrician.

Have you requested a meeting with the SENDCO or any family worker in the school?

Do you have anyone to help support you in meetings or approaching the school that may have been through it? I was allowed to go into meetings with my niece and friend initially as I knew the questions to ask, and gave them the confidence moving forward to push for what they knew was needed.

I may still have some of the old speech therapy material I used too if you wanted to try that yourself, I could post it to you if I do.

Everyone thinks their child is the most important case, and that's fair enough, but that's why the system has to be objective. First come, first served. As a previous poster pointed out, you've no idea what people's struggles are, especially if they're masking (especially common in girls).

Have you any idea how stupid you sound?

I agree with you op, higher needs should have quicker referral. My cousin’s DS is very high needs, he was referred very quickly, he attended a specialist nursery for autism/speech delay. He has very limited speech at age 8, attends a specialist school for autism. Would never have coped in mainstream nursery or school. If your DS is managing mainstream half days he’s not as severe as a lot of other children with more severe needs who need to attend specialist schools. He should still be higher up the list than the children who attend mainstream all day, but you don’t know how long they’ve been on waiting lists. NHS is broken, if you can afford it it’s worth paying for private assessment.

I’m going to answer some of your comments but this really stuck out to me. My son is about to turn 5. He has been waiting for speech therapy since he was 2ish and waiting to see the paediatrician for almost 2 years. I didn’t ’wait to see if he grows out of it’, I’m a first time mum and who admittedly when my son was a toddler had no knowledge of autism and adhd. I got told by the health visitors and medical professionals that he’s young and his ‘behaviour’ may be ‘normal’ toddler behaviour and to see if it is or not. When his ‘symptoms’ got worse and he got older the health visitors noticed and stepped in and it really came to light when he was in nursery and the health visitors and school and all professionals involved came together as they realised something was really ‘wrong’ and he needed help. So yes, he has been on the waiting list for years. My area is so backed up with appointments that he has also been awaiting ENT for almost 2 years as he has sleep apnea, swollen tonsils and adenoids and is a mouth breather - but again, we are being told to just ‘wait’. I guess I’m frustrated as every part of my sons life is impacted by all of his medical needs and is not getting the support he needs as the waiting lists are so long.

As for going private, I’m a single disabled parent. I cannot work due to my chronic pain and if I was able to, my son only does less than 3 hours of school a day so I’m not able to work anyway (if he does longer, I get a call to say to pick him up as he cannot cope or has injured himself and needs to go to hospital). So paying private unfortunately isn’t an option.

I’m aware I came across as a bit of a self centred b*h and I don’t think my son is more important than any other child waiting. I understand masking is an issue - and admittedly masking children can be more in need of help as it can lead to mental health issues - I do understand that. It’s just horrible watching my son not be able to live a life ‘normally’ and not getting any kind of support. I’m also struggling myself, as a single parent I don’t have that break and I have to manage his many meltdowns a day, including being hit constantly, being afraid when we’re out that he is going to bolt and run into the roads etc. I have to cope with him sleeping at midnight/1 in the morning each night then dealing with him waking up in the night, then having to wake up at 6. I’m exhausted, I cannot imagine how horrible it is for him - I watch him cry each day over minor things and getting himself worked up to the point where he doesn’t know what to do so he lashes out either at others, himself or destroys items in our home. His ‘meltdowns’ can last hours and it’s soul destroying not knowing how to support him - I guess what I’m trying to say is I have no support on how to aid him, I’m just kind of left watching him struggle.

I don’t want to come across as dismissing other children, every child is entitled to medical care and support. But when you watch your own child struggle every day is a heartbreak not a lot understands and being a single parent to a child with severe sen, I guess I’m just crying out for some kind of help and support that no one is giving us .

I know, right.

All I had to do was give up my job, fight for 2 years scraping by on next to fuck all to live on, now I'm absolutely raking it in in carers allowance. Wait until Xmas bonus time as well, I'll be able to afford a mutipack of crisps.

And then those less severely affected get to the stage where they really need help. I was that person. I dropped out of university and very nearly killed myself.

But specialists won't know how severely impacted an individual is until they see them. Particularly difficult because symptoms aren't "fell off a step ladder and now I can see a bone poking out of his arm" - behaviour, masking, if they can access good support at school, etc.

So, no, autism doesn’t only affect low income families but for most people with an autistic child paying for a private asd diagnosis is out of the question so a glib “pay for a private diagnosis “ comment, which I was replying to was unhelpful and rather patronising

I disagree that "most" people cannot pay for a private diagnosis. The vast majority of families, even those on low incomes, should be able to access a few hundred pounds if they really, truly wanted to. It's not a life-destroying amount of money. It's less than a month's income. It's the equivalent of what a family might spend on a holiday, an electrical appliance, or a cumulative amount of clothing and toiletries. In the vast majority of developed countries, it's normal to pay for urgent medical services even if you have insurance. People in the UK simply don't want to pay because they can (potentially) get it for free which is, globally speaking, entitlement of the highest level. In many of the poorest countries in the world, healthcare is not free at all and people are aware they need to save in other areas to access it.

By making the conscious decision to have a child, every parent takes on the monumental responsibility that this could come with happiness or burdens. If you are truly living in a such a precarious situation that even a few hundred pounds for medical treatment for your own child is completely out of the question, literally impossible to contemplate and utterly disgusting that strangers should even suggest you pay for a health assessment yourself, then what sort of life are you providing for your child? A child does not choose their family and they do not choose to be born ill. In a ideal world, a child deserves to be part of a family who doesn't consider them such a burden that even a few hundred pounds is too much to spend on them.

There's more autistic children than ever before. Special schools are full. A super sized school for autistic children 5-16, is being built nearby. It's to accommodate the ones not in school at the moment. Waiting lists are there because services are filled. The only answer is to use their dla for private resources e.g. speech therapy. My nephew is disabled, I've watched my sister fight for resources and a space for her son. She was told to use his dla to go privately, that's what's she done. He has really improved since she did so.

Oh OP, your exhaustion is so familiar to me. It is enervating and makes everything even harder than it already is.

I am sure you will want to do your own reading on the subject to decide if this is for you but these are the gummies that I give my DS: https://pipingrock.com/en-gb/products/kids-sleep-melatonin-gummies-cherry-40-vegan-gummies-18171. They won't keep him asleep all night but if he is anything like my son they will help him to start falling asleep earlier in the evening and give you a few hours' break. It's impossible to function without sleep.

No, just because someone disagrees with you then this doesn't mean that they are ignorant or that they have bad intentions. I am absolutely fed up of the MN autism police trying to push their false certainty into every discussion.

Lots of experts believe that ASD Level 1 exists and can be distinguished from other forms of ASD. This is widely considered a less severe form of autism. It is common in most disorders (both physical and mental) for different levels of severity to be acknowledged and this is why we have grades of cancer and levels of dyslexia etc. it is medically helpful to distinguish between the severity of a condition and also helps people to access the right levels of support.

Pretending all autism is the same is just another move towards the binary approach that some seem desperate to support. Some subjective, non-definitive test built on incomplete science says that you have autism and suddenly you should be viewed the same as someone that clearly has much higher needs. We then wonder why the system can't cope and the most desperate cases aren't getting the support they need.

There is a massive lack of support and services for children and families with Autistic children, mine struggles massively but trying to get him help and support is almost impossible. He needs occupational therapy- they sent him an invite for group sessions. That was never going to happen I get it’s money saving but they need to meet the needs of the child they are dealing with, he doesn’t speak out of the home, waiting for salt input, camhs are totally useless.

He does nothing at school - mainstream high school they cannot/will not meet his needs and he’s waited since February for input from Ed psych, etc it’s a joke. No one cares. There is no joined up working, the teacher didn’t send his social work referral in and lied to me, sw actually phoned me to get his diagnosis letter because he didn’t attach it (months later when I did chase up why it was taking so long) it’s a shitshow, meanwhile my son suffers, no education (13 so s2) I’m a single parent so trying to juggle work and school etc is murder. I’m not sure he should be jumping any queues but I do think something needs done. He’s capable of learning we do stuff at home, he can read and write etc but he’s missing out on friends, social stuff, learning how to function in life never mind his academic education and no one seems to care or want to listen.

YABU sorry.

My son is exactly like yours, massive flight risk, doesn't sleep, can't reliably follow instructions, can't risk assess for danger, couldn't talk when he started school, did his first year at school with no academic progress.

I am an autistic adult, so I was an autistic child and I was late diagnosed anyway, but late diagnoses or delayed diagnoses can be so damaging because you have to experience your needs consistently not being met for longer. I might have been low support needs compared to my son, but I still had needs that were not identified and so were not met. As a teenager I really struggled because I did not know what was wrong with me. As an adult I'm incapacitated by my autism quite significantly.

The wait list should remain first come first served. No autistic child should be pushed to the back so that they do not get their needs identified and met or by the time they are identified they've developed cPTSD.

As other PPs have mentioned your son doesn't need a diagnosis for an EHCP, and your child is entitled to a full time education.

My own son did a full year part time because the school could not meet need but in that time we used that as evidence that they couldn't meet need and are now collaborating on appealing the EHCP to get my child into specialist provision. It doesn't sound like your school are even collaborating with you at this point.

I also think profound or high needs or severe autism or whatever the allowed term is now should almost be a separate condition, as it has so little in common with the ASD that permits people to sit on mumsnet merrily typing away, processing and using language.

You may well think that. However, there are very well-documented reasons why that would be non-functional and damaging, not least precisely because autism is a spectrum and profiles are spikey so most autistic people are more highly affected in some areas than others and there is no way to separate people out into different "categories" without it being irrelevant and arbitrary.

People's efforts would be much better spent on campaigning for appropriate health and education funding in these areas than these nasty attempts to minimise the autism of those who can communicate better on a superficial level as though that's the only aspect of the condition that impacts autistic people's lives.

It's also shocking that often it is certain parents of autistic children who display some of the most ignorant beliefs about autism and unpleasantness towards anybody else who is autistic, as the premise of this thread exemplifies.

Wow.

That depends on where you are in the country. The waiting list here for speech therapy is 18 month +.

Your DCs struggles are visible to you, but other DCs struggles are not. Actual diagnosis will not do much to help your DC. It is the speech therapy and EHCP that you need, both of which can be accessed without confirmed diagnosis. I would suggest approaching the school/LA to see if any SEN support groups/classes could help you with strategies. I also find Instagram can give lots of useful tips. Pages such as resolvetoplay, peachy_speech, fiveminutemum, abbiewalkerh.

It should definitely be more consistent everywhere. We were with CAMHS and they proposed going for autism diagnosis and it only took 3 months to wait whereas friends who have gone a different route via GP face a really long waiting list. And it seems very different in what you can access in different areas of the country. I can see you need more help than we do and so in theory would have been fine with you going ahead of us in the queue but agree with PP about how is that practically applicable across the board

How would the triage system work, though? It would be self reporting by parents or GPs/teachers etc who aren’t experts. Imagine the grief you would get from parents saying that you didn’t think this was the most urgent when parents were tearing their hair out at home trying to get help for their child.

@User645262 - it costs £2k to get a private diagnosis. Money that people really do not have. It is expensive as professionals need to come out and observe the child in the school setting, plus it is a multi disciplinary assessment involving many professionals. A clinical psychiatrist will make the diagnosis but the assessment team is comprised of several professionals.
As well as my DS, who was in the support system as a pre schooler and got an NHS diagnosis, we are on a wait list privately for DD 17 who sailed through primary but came to grief at high school and took an OD. I suspect she is high functioning autism.

OP - sorry to hear of your struggles. No doubt you will be well familiar with the DWP system, being disabled yourself.

It is very concerning that your HV was not on the ball in helping you to access help years ago. I think you need to go down the DLA route and go private. It wont change your DS but having a formal diagnosis does open a few doors in education.

Lots of experts also acknowledge that because of spiky development profiles and challenges that autistics face, that support needs can change so it's not always appropriate to categorise individuals with autism into a category as they won't necessarily stay in that bracket and it dismisses any help that they might need in future.