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

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.

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.

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.

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.

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.

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.

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.

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.

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.

@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.

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

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.

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

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 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.

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.

@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?!

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

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.

The very long wait in some areas (now increased to 3.5 years locally) isn't helpful for ensuring the right people are referred.

My oldest is diagnosed autistic as are other family members. My younger child is showing signs too but I don't think quite enough evidence yet for a referral to get accepted. If I wait a year to refer then we're talking possibly 2029 until he's seen!

Neither my DS, nor his father, have autism that could be described as having a ‘significant impact.’ They wouldn’t say that it does either. They gained diagnosis because their social skills aren’t NT, for example my ex lacks empathy. This affects his relationships with others, but he doesn’t want a partner and is he happy with the few friends he has who accept him, so it doesn’t bother him.

He’s a great geography teacher as that’s one of his keen interests, so he can go to school everyday, teach the syllabus, have interactions with the students (which is easier than adults), go home and repeat the same the next day. He doesn’t have colleagues, he doesn’t hang out in the staff room, but then again, he doesn’t care. His interactions with other staff are almost exclusively email based, and he is ‘high-functioning’ enough that the few times he does have to do face-to-face meetings, he can manage. Even parent’s evenings now are all online and he just reads a script about each child!

He certainly wouldn’t say his autism significantly impacts him now, as an adult. He did struggle when he was younger with peers at school and some bullying, but again, I’m not sure that could be described as a significant impact. Lots of NT people are bullied too. I guess what I am saying is, ‘significantly impacted’ is subjective and if the autistic person themselves doesn’t feel that way, it’s not really up to us to say that in order to be autistic they must also be significantly impacted.

My ex is just one example of an autistic person with this profile, I’ve met many who are very similar to him.

That was why I said referral by GP to a sleep clinic.

If a child is as obviously struggling, as the OPs, is then they will look at the sleep issue and may prescribe melatonin as an option without a diagnosis of ASD.

My son accessed it via our neurologist based on his needs rather than a diagnosis of ASD, although he does now have this diagnosis.

But it’s not just about how a person can interact with others. Managing a work life is one aspect, but what about home and family life? Does your ex manage self care, shower every day adequately? Pay bills when needed and not in debt? Keeps a clean home? Can take on shared care of your child without any input such as ‘he needs clothes bought/washed at your place, he needs teeth brushed morning and night without fail, he needs three balanced meals a day not just live on crisps and pizza’? Of course many autistic adults do manage these things but many that are wrongly deemed ‘high functioning’ often lose self care aspects when living alone or rely on others to help outside of familiar routines that doesn’t interest or even cause sensory overload.

See above.

This is the way to go with school issues. They also can't legally force a part time timetable. It is a huge battle and takes a long time and possible tribunals, so start getting the EHCP ball rolling as early as possible. My son was very obviously autistic and severely delayed though.

Getting a diagnosis took a year for us, but we already applied for EHCP months before. It gave the mainstream an extra 18k in their budget eventually for 1 to 1, so that might encourage the school to help with the application process. It took 45 weeks to complete,not 20 and even then they refused to name a specialist, so we had a tribunal to get him in.

Speak to SENDiass or IPSEA to find out your rights.

Once you are on board with a consultant you might get prescribed Melatonin or you may have a paediatric sleep service locally. Ask you HV to find out. Until then I bought online out of desperation. Don't judge, we were on our knees as a sleep deprived family. Have a baby sleep stage yourself for four years and then judge.

My son is five and still wear reins out and we use a special needs buggy. I don't care what people think. He is safe and that is the most important thing. Being a flight risk endangers others, not just him.

You can apply for DLA without a diagnosis. It is assessed on need. Again wait is about 20 weeks. Start ASAP. You should get higher rate care being up at night. It helps for all the things needed for your child as you don't get buggies and OT equipment they need given to you by services like most people think. There barely are any services!

This sounds bad, but from experience you need to get accustomed to being a complaining, pestering pain in the arse, particularly with the LA if you do go for an EHCP. Make complaints, threaten to speak to the press, but alway be considerate to staff on the receiving end. Most of them understand how shit it is. If we hadn't done this as a family, fuck all would have progressed.

Please PM me if you want help. It might work differently where you are, but there are common themes. It's shit and I've been there. I hope things get better for you.

Have you actually read his diagnosis reports? The significant impact threshold does not just apply to social/ communication issues, but all of the three areas of diagnostic criteria. Diagnosis should not be made unless there is evidence of a significant impact in all three. Why did he seek diagnosis if he didn't think there is a significant impact on him? And then seek diagnosis for your son as well if you don't believe he is significantly impacted?

Obviously yes it involves a level of judgement but so does the diagnosis of many other medical conditions. Criteria are clearly set out and a multi-disciplinary team evaluate extensive evidence and perform detailed assessments across the multiple diagnostic criteria before deciding whether the "significant impact" criteria is met. As I said, I do not know your family and haven't read their diagnosis reports but it would be extremely strange - a huge coincidence - if there had been malpractice in the cases of both your ex and your son and all of these different doctors and specialists had mistakenly concluded in both cases that there was a significant impact on each of them when there isn't.

I also find it odd that as someone with an autistic son (and ex-husband!) you posted to say you took exception to me mentioning the "significant impact" threshold for diagnosis as though it was something I'd made up when it is a critical part of the diagnostic assessment, as presumably a parent of a diagnosed autistic child would know this because they'd have thoroughly researched the condition and what the diagnosis means, the very first step of which would have been to look up the diagnostic criteria which state this "significant impact" threshold. So I find your posts quite odd and confusing, to be honest.