To think autistic children with needs affecting their day to day life should go to the top of the waiting lists?

Wow.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Have you any idea how stupid you sound?

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).

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.

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.

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.

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!

But this is the whole problem with autism as it is currently understood. It has become a meaningless umbrella term backed by inaccurate and poorly understood science.

You have described two very different cases of 'autism' that technically satisfy the test for the triad of impairment but in totally different ways. Someone like your son could easily miss out on an autism diagnosis if they scored slightly lower in one triad. This could easily be because a professional subjectively assessed him differently.

I suspect if this happend then he could be diagnosed with some kind of anxiety disorder but it would become more difficult to get his needs recognised. His suffering wouldn't be any less but because he didn't meet the magic threshold of being 'autistic'.

Meanwhile you would have kids that are much less impacted than your son but satisfy the triad of impairment test because their traits just happen to align to the current criteria. The whole thing is dangerous because people take the diagnosis so seriously and attach a false level of certainty to it.

This

Err so what's your point?

Unfortunately if that happened those who aren't in dire need would never be diagnosed and would constantly get put to the back of the list.
You can go private if needs be.

My eldest has a learning disability & autism and we had to wait 2 years for a diagnosis it's just the way it is unfortunately. To many people claiming to have autism or their kids do nowadays when they don't and it's filling the waiting lists up to much.

There is no such thing as "moderate/, mild autism". Research shows that you cannot tell how much someone's autism impacts them by how they present in public and whether they mask or not.

These comments are so discriminatory and contradict the numerous high quality medical studies on the topic.

Yet another Mumsnet thread full of vile ignorance.

And then all the other children just keep getting pushed to the bottom of the list. Why does your kid's needs trump any others?