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

I agree about us all being judged by NT expectations!! Absolutely.

I don't know your family and obviously haven't seen their diagnosis reports but diagnosis requires significant impact on ability to function in multiple areas - not just social communication - to reach the diagnosis threshold, so I presume there are significant impacts in other areas of life as well? Obviously I know nothing of them or their lives so cannot answer about how this manifests for them.

And also, much as many of us are happy with minimal social interaction, because the world is designed by NT people for their preferences this does put us at a disadvantage in terms of forced interactions in a busy school/ many work environments, family expectations (for those not lucky enough to have a family that understand), job interviews, university interviews, companies that insist on you phoning them rather than emailing... etc.

You have to meet thresholds of significant impact on life in certain areas to get a diagnosis.

@ZombiePlanet I do take issue with your point that a diagnosis will only be given if there is a significant impact on daily life. Who determines what is a ‘significant impact.’ My DS and his dad are affected by their autism in that it makes their social interactions difficult, and as such they are both solitary, but they are happy and don’t really care about having friends, instead spending time on reading, gaming, and other pursuits. Isn’t it a NT expectation and also patronising to say that ‘not having friends’ or ‘not enjoying a social life’ is a significant impact if the autistic person doesn’t think so?!

They don't get to choose to disregard medical reports because they were not provided by the NHS. That is illegal. I don't doubt at all that you're telling the truth that they've instigated this illegal policy, but please raise a formal complaint about it. Local Authority staff have no qualifications to overrule doctors.

Can you imagine if a child had been seen privately and had asthma or epilepsy or any other condition diagnosed and schools or Local Authorities ignored the medical documents setting out diagnosis and required adjustments/ treatment?

Again, it's blatant discrimination against autistic people that they wouldn't dream of trying to implement against people suffering any other condition.

I disagree. I've had a battle to get my on the waiting list in the first place, all because she behaves at school.

The SENDCO at school agrees she has Autistic traits and believes she is Autistic. CHAMS wouldn't assess her because she behaves at school. I went to the GP who agreed we could go down the right to choose pathway. That was 6 months ago and she's still not on the 2 year waiting list.

She struggles daily but masks at School, it's not until she's at home that she shows how much she's struggled to get through the day, often ending in meltdowns, selective mutism etc.

How much longer should she have to wait just because she appears, to the outside world, to not have any issues. If she kept getting pushed back for other children that would not be fair.

The funding needs to improve, it's not other children that should be made to suffer.

Perhaps we are approaching it from the least satisfactory angle for all children’s outcomes. With the level of need, special school places could be created with staff with specialist skills so that children with apparent needs start school there and then perhaps could transfer to mainstream school if appropriate and with support to do so. The current situation doesn’t work for anyone - schools, teachers, overwhelmed senco, SEN kids a or NT kids.

I think severe MH, treatment adjusting needs and severe learning difficulties are equally as important as regards prioritising.

Also, @orangeleopard, no child will get an autism diagnosis unless their needs are "affecting their day to day life", per your title. It's part of the diagnositic criteria that there must be a significant impact. No child would be added to the waiting list at all without evidence that there are issues affecting their day to day life.

to further demonstrate the point I've made earlier in the thread, I'd be interested to know you'd characterise my daughter. She is likely one of the children you'd dismiss as unworthy of support. The master-masker, very bright. One of those children that people like you say "doesn't seem autistic". Yet after starting school - despite all the support and interventions and preparations we'd put in place at home with emotional regulation, executive function, anxiety, etc - she reached total burnout twice in Reception year resulting in panic attacks where she could not breathe properly, refusing to eat, waking screaming with nightmares, violent meltdowns, regression in executive function so she couldn't dress herself or be in a room alone and had to sleep in my bed again, crying herself to sleep saying repeatedly that she didn't want to live any more days and wanted to never wake up. Saying there is a hole and just black where her heart should be and she doesn't know who she is and it would be better if she was not here. Aged 5.

Yet at school she is so desperate to fit in and be liked and is very sociable so holds it all inside and masks all day. They say she is "fine". People like you no doubt would say that her autism is "mild" or "not severe" because she is articulate and very intelligent.

She ended up missing an entire term of Reception because of total burnout and mental breakdowns, until we could get the school to put the support she needs to even attend safely again in place, because she is discriminated against because she masks and doesn't cause a problem for the teachers, and is so intelligent she met all of the learning targets despite missing over 1/3 of the year.

Yet if she struggles like this in Reception, can you imagine the damage that will be done later when social relationships are more complex or friends reject her for her differences, and demands at school to do what they want rather than follow her own thoughts and interests ramp up? The risks of harm that she will be subjected to in teenage years terrify me (autistic girls with high IQs being at a risk many multiples of times higher of bullying, abuse, sexual assault, rape, self-harm and suicide; largely because their support needs and vulnerabilities are minimised and dismissed because people conflate intelligence and support needs when the two are totally different).

On the surface you would say her support needs are small because she isn't disruptive and appears to be "fine" while she's masking. You'd also be entirely wrong.

Fortunately she diagnosed before starting school because being autistic myself I picked up the signs early, took her through the initial stages of NHS diagnosis then on their advice had the final assessments done privately to speed things up, so she'll not be blocking up the waiting list your son or others are on. But she most certainly is not less worthy or in need of support than your son is.

I strongly suggest you seek support from other parents with autistic children who provide astonishing support networks for each other despite the demands on them caused by failing services and schools, rather than trying to characterise them as the enemy.

You have no idea how much someone else is impacted by their autism and how much support they need by meeting them casually. School staff who work with them all day but are not doctors and specialists often don't even have the faintest understanding, even with reports from numerous psychologists, SALTS, OTs and neurodevelopmental paediatricians provided to them they still don't seem to be capable of understanding a child's needs, so as someone who barely knows a child and observes them only in certain environments you are in no position to make any judgement on the "severity" of their needs at all.

I really hope you take this and the other comments in this thread explaining similar on board. It's bad enough that the parents of autistic children have to fight just to have their children's basic legal rights to access education enforced. Creating division between autistic people is not the way forward.

Those with serious mental health and treatment adjusting needs are prioritised and quite rightly so.

@YoucancallmeBettyDraper

''I think there should be a range of triage criteria one of which is violent behaviour towards other family members.''

Absolutely agree.

Once a child becomes big and strong and a physical danger to family members, outside help and care is absolutely needed.

A mother {the Dad cleared off} was put at serious risk of harm {of the worst type} by her teenaged child - When the same thing happened again, she knew she might not be so lucky next time- and her young adult child is now in a specialist place where he will probably stay for the foreseeable future.

Exactly the same story with my son. The diagnosis has just given him the confidence to explain to others why he may not be socialising with them, or may react to things differently. He’s very eloquent in explaining his diagnosis and what it means. He hasn’t received any extra support at school since his diagnosis though, as he doesn’t need it.

As a mother of a diagnosed asd child who is on the lower end of needs I completely agree with you. I have friends who's children are struggling, effecting their school peers, parents, siblings, I feel they should be prioritised.
We waited our turn like everybody else, but thankfully the coping mechanisms and strategies we had in place meant we were all running along fine.
In fact since his diagnosis nothing has really changed as his needs haven't changed.

I don’t agree with bumping people up or down the list. However, I do believe there can be varying degrees of functioning, and I do raise an eyebrow at people who argue masking is just as harmful etc.

My DS is autistic, so is my ex, his father, who was diagnosed last year. His father works as a geography teacher and lives alone, he has a few friends but generally enjoys a solitary life. He is generally happy, though accepts autism (he would have been Asperger’s previously) has affected his social relationships, including the contributing reason to our split. He accepts that he will never be particularly adept socially, but he is happy to go to work, come home, repeat. He lives completely independently, though he did rely on his parents for longer than expected (until late 20s, which really is becoming more common anyway).

My son has very much the same autism as his father, and at the moment, is in mainstream with no struggles (his own words). He thrives academically and goes to the library at lunch time, he doesn’t seek social engagements much nor does he particularly care for it outside of his family. He doesn’t have meltdowns. He doesn’t struggle with activities of daily living. His autism is confined to social, and he’s accepted he isn’t particularly social and isn’t bothered by it, just like his dad. Funnily enough, he is well liked by his peers and often gets invited to parties and is described as kind and caring (he is, despite being very solitary!)

My friend’s son has an entirely different type of autism. He is almost completely non-verbal, cannot attend a mainstream school and smears faeces everywhere, daily. His sensory issues are off the chart. Even getting him to his special school is difficult. He has huge meltdowns which last for hours and he often destroys the house in the process. He doesn’t have a diagnosis of learning disabilities, now age nine. He will need 1-1 care, probably for the rest of his life. Her life and that of her sons is completely consumed by autism. She cannot work. She cannot go on days out with him. She cannot go on holiday. She gets no respite. She gets quite frustrated when I mention my DS / his father’s autism, as she doesn’t see that the two are similar at all or should both be considered ‘autism’. I can’t say I blame her to be honest.

I have huge sympathy for you and as a parent of an adult with severe learning disabilities I would agree that there is a difference in level of need between a child who is coping at school but maybe needs an extra hour in exams or something to one who is severely struggling such as yours. Obviously there will be every degree in between, but a system where the more severe ones are seen sooner would make sense. No-one would suggest that the person coming into A and E with multiple severe road traffic injuries should wait in the queue behind the people with broken fingers or even a broken leg.

A diagnosis will make it easier to get some things, but in the meantime I would seek out as much help as you can get. Is there a SENDIASS in your area that could advise you on education? That is a free service - often you have to ring and leave a message but hopefully someone will get back to you. Are there other groups supporting parents of children with special needs - just having others in similar boat to talk to might help and other parents are often a very good source of information and suggestions. Have you seen the GP to talk about melatonin for sleep, that might help also.

I'm very sorry you're both having a tough time.

He sounds like he has very high needs, and isn’t at all of the level of autism that I’m talking about re the changing of diagnostic criteria over the years. It sounds as though he would have still been diagnosed 30 years ago.

Also “my new scheme” would have seen needs being met by services without the need for a diagnosis, which many places are already doing - but funding is needed! That’s what I’m talking about - not about abandoning children who need help. All children who need help should get it. It’s great that more kids are getting the diagnoses they need but the current way of doing things isn’t working. It means people like your son face huge waiting lists and are on the same waiting lists as kids that need help but far less urgently. There are some families who need help more than others. I think there should be a range of triage criteria one of which is violent behaviour towards other family members.

Even with a private diagnosis some education authorities won’t accept them anyway, ours wouldn’t, i am not 100% sure this wasn’t an excuse but I found this out when I did some research a few years ago it may have changed by now.

Sadly a diagnosis doesn’t mean help will automatically become available.

And so far the ECHP I have isn’t worth the paper it’s written on, luckily I can afford and prioritise my children’s education by using other resources outside of school.

And no I don’t agree one child’s needs should be put above another’s, yes we have a shit system in place but your child doesn’t trump anyone else’s.

I agree with that, too. Social care is an absolute mess and what is expected of family carers is totally unrealistic, especially as they become older themselves.

The answer to that is to fix our economy so that there is sufficient growth to fund the required services properly. Two of the most fundamental reforms required to achieve that are to ensure the appropriate healthcare and education is in place for all children in a timely manner. That way those who need a little support to achieve an independent life and skills for employment can do so, and will be able to fund those who cannot.

In my case a lot of the evidence for these things came in the form of what support was in place/had been sought. So yes I can't prove that my child doesn't sleep well. But I could prove that he had needed a sleep study via ENT, had been medicated for silent reflux to see if that would help improve sleep, had repeated HV and GP appointments for sleep issues, appointments with a sleep support charity etc.

Similar with other issued. I was able to provide evidence of longterm referrals abs support from HV, GP, dietician, charities etc.

In theory I could have made all this up but I'm pretty confident there are much easier ways to commit fraud if you have that much time and effort.

YANBU and this is how the waiting lists are managed in some areas. In our NHS trust there are two waiting lists - the urgent one is for those who meet one of 6 high-priority criteria (Education placement breakdown, Family unit breakdown, on Child Protection Plan or in care, being seen by or waiting for CAMHS with severe mental health difficulties/self-harm/risk to self or others, Youth Offenders, or very low communication abilities) and the "everyone else" list - and the urgent list children do get seen a lot quicker but it's still about a 6 month wait for the urgent cases (about 2 years for everyone else). Check whether your own NHS trust has something similar and check whether your child has been correctly triaged, it might be that the referral documentation didn't adequately describe the urgency of your child's situation.

HOWEVER - please also understand that a diagnosis does not open any doors that aren't already open. There are many children with complex additional needs who never get a diagnosis - and they are still entitled to help. You need to focus on getting an EHCP in place and this does not have to wait for a diagnosis.

@ZombiePlanet - I agree with everything you said in your post, of course all children should be enabled to achieve their best possible outcome but many of the posters here are describing children who, with every possible opportunity and support will never live independently - presumably parents will have to continue doing their best for the rest of their lives. This could be a huge care crisis for us all to manage.

@Ohfuckwhatdoidonow EHCPs, like DLA, are bases on need not diagnosis. One child with an ASD diagnosis may have an EHCP, whilst lots of others won't due to it being based on need.
What you need to evidence for a EHCNA is to show that your child may or may not have SEN. That's the only test in law they need to pass. You can apply for it yourself and when your LA inevitably says no, as it does to most applications, you appeal it (very easy, paper hearing). Most LAs are completely overwhelmed and decline almost all EHCNAs, it's a big reason the appeal success rate is something like 97%.
Ask your school to provide you a list of interventions they've already put in place, how they've spent the £6k for Sen and go from there.

I would wager that those of us who are desperate enough to pay for an assessment - and in doing so HELPING to keep the NHS wait list down - probably do a tad bit of research with regards to credentials of professionals before going ahead.

I certainly did.

Referrals to are already triaged and categorized - emergency referral where there is immediate risk to life. Urgent which are things like imminent risk of hospital admission or care placement and routine for everyone else where the need is not life threatening but affects behaviour, social life & education etc.

Tbh I think you're putting far too much hope in a diagnosis. Just because he'll get the diagnosis doesn't mean there's much support after that. It's unfortunately a postcode lottery and you should be applying for an EHCNA if you want anything remotely set in stone. I say remotely as a lot of places struggle to get any therapeutic input even if it's written into a students EHCP.
During an EHCNA you can request for a pediatrician/ autism team to see the child which often speeds up the process- but is a big reason for the backlogs in a lot of areas.

We are in the exact same boat. We are 'lucky' that our son also has a physical disability as well as severe autism so he has alot of people around him,physio and o.t etc. who will sometimes get in touch with his paediatrician/neurologist and ask for an app so we can sometimes get seen sooner if it is urgent.
But most the time we have to wait up to a Yr for appointments. It's so difficult.
It does depend where you're living as to how good your NHS services are but ring your child's hospital and ask for your child's paediatricians secretary's email/phone number and email and explain what's going on. It may or may not help but worth a try if you haven't already that is.