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

@Bumpitybumper no, again, I did not say "autism is binary". In every single comment you have made to me you have made things up and tried to attribute them to me. It's extremely dosingenuous.

There are subjectivities in the diagnosis of many, many medical conditions. There are often borderline cases for many medical issues and doctors can disagree on these which is why second opinions exist. That isn't at all unique to autism so this is a non-argument unless you want to start disparaging a large volume of medical science across different areas of medicine.

The above had absolutely no bearing on autism resulting in various different types of difficulties: social and communication difficulties, intereception difficulties, exteroception, proprioception, processing, emotional regulation, executive function, etc. Different autistic people will "score" much more highly on some of these and lower on others but most have spiky profiles, hence autism being described as a spectrum. How would you categorise people into "levels of severity" when some struggle more in one area and some in another? What would the criteria be for this categorisation? Further complicated by the fact that over time, due to environmental factors etc, the weighting within someone's profile may change.

Therefore, there is robust research has debunking any notion of any non-arbitrary way of categorising "severity" being possible to implement and - even if such an arbitrary system was attempted - it would then necessitate regular reassessments throughout life because some people would move between whatever arbitrary cateogories were created. Not to mention reassessment of all of those already diagnosed.

It would be far better to spend resources on actually providing appropriate services to support all autistic people to engage in education and participate in society to the fullest extent possible.

My point is that an inkling is by definition a suspicion or hint. It sounds like your daughter's case became much more than an inkling in a relatively rapid and dramatic fashion but in many cases this simply won't happen. You can't extrapolate from your daughter's case that all inklings should be dealt with with similar urgency as the system just couldn't cope this this.

Anecdotally a good number of my friends have inklings that their kids may have some neurodiversity. The children are a bit repetitive in play, struggle to socialise and can be highly sensitive. I'm sure that some will go on to be diagnosed with something but equally I'm sure that some won't. It would be absolutely crazy for every single one of them to seek a referral and expect to be prioritised in the same way as OP's child or your daughter.

My uncle is almost certainly autistically and has never been diagnosed. He still lives with his elderly mother. She manages his finances and makes sure he clothes himself etc etc. He managed to get through school and he had a job briefly. But thats it. He and his mother refuse to address this. This means the burden is likely to fall on my father in an ugly mess when my step grandmother dies.

There was a thread earlier this week regarding adults who can't live independently who live with elderly parents and there were a number of posters who said how this affected their family in the absence of a diagnosis. It make the whole process of getting adequate support a lot harder.

There are also implications for certain situations - such as being arrested or going into hospital.

A lot of autistic people might generally be able to 'cope' to a point, and to an outsider look like they are able to function and don't need additional support but there a lot of situations where this is not the case. Even for 'mild' autism.

There is a massive range of needs. But the key point is they remain needs.

A failure to support those needs has massive implications for society as a whole.

I worked in CAMHS in Scotland. There was a list that was years long but there were appointments allocated every week for cases that came in via the ‘duty’ phone calls. Anything that met criteria for risk was seen within 48 hours and once your were seen, there is a legal duty to act on risk. Being a flight risk would have met criteria where I worked. Might be different where you are but where I worked CAMHS was pretty well integrated with school and other services so could co-ordinate via GIRFEC rules.

Sometimes it’s about getting the right person on duty (it’s a rota usually) and knowing what to say. On occasion I phoned parents back and gave them advice which would probably have got me disciplined but hey ho. You are right that impact should decide priority but sadly clinicians are often dealing with immediate suicide risk or spending their duty time in A and E doing risk assessments. The truth is that doing the work with neurodevelopmental kids early on would reduce the pipeline of critical cases later on massively. This is the main reason I’m no longer in the NHS.

They do. Both my children were put on a priority list.

The other flip side is this. You still have to work to get the support when you need it. You don't automatically qualify for it.

But a diagnosis will often help your case if you end up in a situation where you do need additional support too.

You don't just get disability support financially or otherwise with an diagnosis. But if you demonstrate a need for support its not going weaken your case.

Surely part of the criteria for getting on the autism assessment list should be there is a history of significant functioning problems and that other explanations have been investigated and discounted. So those with higher needs would already be further along in the process.

I think its reasonable that someone who has never been involved with mental health services, functions well socially and never required support in work or school but turns up at the GP asking for a diagnosis should start at the beginning of the process and therefore at the end of the queue.

Well that's your area. It is not the same across the board.

Depression and anxiety do fluctuate but they're mental health conditions not neurotypes and the rate at which they fluctuate can be quite drastic. We also have different kinds of depression which already helpfully categorises and distinguishes the cause and possible support required, there are some kinds of depression that last days and some that last months. If you're in treatment for depression you usually do a based on your last 2 weeks risk assessment and each 2 weeks can be different. It doesn't necessarily identify your support needs, but the rate at which your scoring can change can be quite drastic over the course of weeks. We still usually categorise this because it identifies a level of risk to a person but not necessarily need.

Cancer is a progressive condition, so of course it's helpful to know which stage someone is at so they can receive treatment but their support needs are typically expected to increase with progression, autism isn't a progressive disease so I don't think it's fair to say it has to be classified in the same way.

I am not disagreeing with you that it's helpful to have a way to determine one's support needs, I am just disagreeing that the American way of splitting into 3 categories isn't necessarily very helpful and whilst a lot of professionals agree, a lot of professionals disagree and as an autistic individual myself, being diagnosed with a level would have been more detrimental to me and getting my needs met than simply explaining my needs are low to medium support needs at present.

Autistic burnout means people who are autistic are more pron to mental health crisis. A diagnosis helps management and reaching burn out because this stops it reaching that point. It doesn't mean that someone needs support constantly, just appropriate management. This is why it is important for 'even mild' autistim to be diagnosed because it is about risk management and good mental healthcare. The cost of dealing with a mental health crisis is a hell of a lot more than increasing access to appropriate diagnosis.

Its not a competition with people who are severly autistic and therefore 'more deserving'.

The problem doesn't just fuck off because you don't have the diagnosis.

Anyone who can't grasp this, is very ignorant.

Aside from speech therapy which he should get anyway asd diagnosis gets no actual help.
Melatonin perhaps you could get referred to paeds for sleep issues (note in usa and eu you can buy oTC)

In terms of waitlists our aeprea does prioritise
Is it fair, not really.
Weve waited since feb 2022 for now 12yo.

So we had pretty traumatic move to secondary with no help from secondary.
She made no friends and doesnt get on with her class.
No ehcp so no priority for secondary and her class are generally challenging.

But also (aside from speech issues) ive been there in reception (and some issues in preschool) and it was crap. I thought she would be excluded (hitting, scratching etc). But back then the senco didnt actually know about sen so all treated as naughtiness so just sent out of class and to other classes or often the HT.
no actual meeting with teacher for months and even then no help re playground which was where the issues were!
Things did get better, as other kids behaviour improved so by y1.
I think re waitlist young vs older child
Older at more important point in school
We cant get extra time in exams
Bullying much more severe
Threats of killing self
Self harm
Homework that does need to be done
Sleep is still an issue
I cant say to her i think she has xyz..
But independently she is now saying it! And wants to know
Higher risk that if anything happens without diagnosis likely to be excluded etc

So whilst i think its becoming clear my dd is autistic it was certainly in primary not understood or picked up on (ever)
But if children are relatively severe - speech etc etc then it rather than being moved to top of a list makes sense to be able to assume that is the issue until they reach the top of the list. As based on need there will be some need either way.
Stuck for years in between
Dd has a friend from preschool who gphad more severe issues from preschool/starting school age and they got the diagnoes around 7. I think it orobably does help the relations with the school be more positive.
And i would say with dd moving from primary where (even with referral she was seem by teachers as naughty) to secondary where they have seen her as SEN has helped her be seen more positively.
Anyway we are all fighting over scraps at this point.

What imoact with the diagnosis have?

For asd probably very lottle. Because with or without one she will still get excuded from parties and friendships. Even with diagnosis other parents (and teachers) will still judge parenting. We might get extra time in exams which is needed either way as she never finishes work.

Re adhd referral we did get forms to fill on for that almost a year ago now and still nothing else. But that diagnosis could potentially change her life. As she is very impulsive. That affects friendships. She is spending most of all lessons doodling in her books. Its probably affecting test resuots and the nightmare of trying to get her to do any homework! It took an hour to do 20-30min of maths and over and hour yesterday and all i wanted was her to write out german vocab twice.

@User645262

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.

We're managing on my income alone - around £1600/mth. DH makes a small amount, just trying to cover his costs (car, mobile) essentially so he can be there as carer for DS. We do have a reducing amount of savings.

We don't have holidays, I buy my clothes in charity shops, spend the winter cold to save on heating costs, try to just have heating on when DS is home, which is difficult as he's spent a lot of time at home.

Private diagnosis would have been over £1,000. And the LA wouldn't have accepted it, so it wouldn't have helped DS get a place in the specialist autism base - everything else, such as an IDP, was already in place, his primary school didn't need a diagnosis for that, we didn't need it to receive a carers assessment, a TAF worker, Parenting Support Worker, OT referrals, CAMHS referrals. We very specifically needed an NHS diagnosis for the secondary school placement DS needed.

Thankfully we now get DLA as well - a lot of which goes on swimming, as he won't bath or shower so the only time he gets washed or changes his clothes is after swimming, and then he has a whole routine which goes with that so it ends up being around £150/mth plus travel costs as sometimes he likes to go to a swimming pool further away. He also puts holes in his clothes almost as soon as he gets them - and doesn't care about wearing them, but I'd prefer it if he didn't go to school in rags.

You think someone just turns up at the GP asking for a diagnosis without a history?!

Good grief.

No, I haven't made anything up thanks.

It's one thing to discuss the practicalities of a system that recognised different levels of autism but it is another to suggest that different levels don't exist (which is your original position). Lots of conditions have severity levels that need to be reviewed and reassessed, it certainly wouldn't be unique to autism.

Your questions about assessing the severity of autism come back to our current understanding of autism and how we are now broadening it out to the extent that we are now using it effectively as an umbrella term. There is a push by some scientists to reinstate Aspergers and other levels more formally for this exact reason. The nappy wearing, non verbal people with autism aren't in a position to fight for this when the loudest most articulate voices will almost always come from those that are functioning at a higher level and yet absolutely do not want this to be acknowledged

Your ideal of everyone getting appropriate resources only works with infinite resource. This is never going to be the case so we need to carefully allocate the resources we do have to those most in need. It will be extremely hard to do this without some meaningful way of differentiating the severity of the condition.

We were quoted £3-4k. We can not afford that.

We paid privately. Cheapest we could find was £800.

The wait is mad now BUT to be expected after covid. Imagine how the kids who were cancelled then would feel about people jumping the queue!

Agree. I've never applied for DLA for my son purely because I never saw that any financial support would be of any use. The support he's always needed is not financial, sure there were some sensory issues more so when he was younger that required specific clothing or calming items, and we had a lot of destruction that required replacement, I had to switch careers as couldn't find childcare willing to take him etc, but even so, I didn't see how financial support was the appropriate response.
Alternatively, my friend and my niece absolutely need the DLA they get for their kids, because of the complexity of their needs, it really does have a lot of additional financial implications and they did need a lot of evidence to back this up.

Sending hugs OP. This sounds incredibly difficult.

It’s unfortunate but you will need to get out there and advocate for him yourself. Pursue an EHCP. Connect with some autism charities to find out about extra support. Join forums or facebook groups of parents of SEN children- you might be able to learn from their experiences.

I would be questioning the validity of a 'cheap' assessment. Equally I question the validity of any private assessment, however to get a reputable clinician it's usually at a higher cost

There is a push by some scientists to reinstate Aspergers and other levels more formally for this exact reason.

I think this would really help.

It's part of the reason we went private. Our son could have absolutely waited years for a diagnosis. Our only pressure was him starting secondary and the need for him to go in with everyone knowing the situation. We

live in an incredibly ignorant World with regards to autism awareness and I do think the different diagnosis helps both kids, parents and schools to understand potential needs better.

I know it was changed in order to be more inclusive and to stop Aspergers being seen as the more 'acceptable' face of ASD, but if it is seen differently by professionals to the extent that the symptoms are separate, why not keep the diagnosis?

It wouldn't help at all. DD would have been given an Asperger's diagnosis years ago, now she needs full time support. Cannot talk to anyone other than immediate family, has never been out alone despite being mid teen age - that's not an Asperger's presentation, however that's what she would have been 'given'

No, I haven't made anything up thanks

Yes, you have. I have specifically pointed out in my comments numerous misrepresentations you've made/ claims that I've said something that I have not, just in your replies to me let alone anybody else.

It's one thing to discuss the practicalities of a system that recognised different levels of autism but it is another to suggest that different levels don't exist (which is your original position).

Again, you seem to be wilfully misunderstanding what I have said even though I - and others - have explained it very clearly (as does the medical research on this topic). There is no non-arbitrary way to categorise autism into "levels" because of the fact it is a spectrum with different impacts in different areas and different autistic people may be "severely" affected in certain areas and far less in others. Therefore, it would not be possible to design a system to categorise people into "levels". And - as also described by me and other posters and the research on this - profiles of support needs in different areas change depending on the environment the autistic person is currently having to deal with, whether they have had early intervention and therefore better coping mechanisms for certain aspects of the condition, whether they have reached complete burnout, whether they are subjected to constant ignorance and minimising of their disability and support needs by those around them and in society in general and therefore end up with their support needs exacerbated by the mental health problems caused by a lack of appropriate support.

It is not possible to categorise people into "levels" in any meaningful way for these reasons, and as such no such categorisation can "exist" without being arbitrary and pointless, and most likely extremely damaging as well as wasting yet more resources on regular reassessments of all autistic people in order to update their arbitrary categorisations that you wish to assign to them.

I have been absolutely consistent in what I have said.

As for resources, there is clear evidence that not providing early diagnosis and support is far more costly in the long run, both economically and in terms of the human cost to autistic people and their families. This is short-sighted and self-defeating and a classic example of why UK services, society and its economy is in such a mess. As someone who pays a high 5 figure sum of tax per year, I want it invested in long-term policies that are evidence-based, not in armies of staff who think their job is to try to sit around minimising disabilities and destroying children's life chances by finding excuses to break the law and force parents to fight them through tribunals to comply with it which children suffer and have their mental health and educations wrecked, but instead using the salaries paid to these people to fund frontline staff to actually provide support to children to help them thrive.

It wasn't 'cheap' and it is absolutely valid!

The clinic we chose AFTER LOTS OF RESEARCH actually takes on NHS patients for diagnosis in that area and meets the same standards, but well done on being part of another big problem in autism awareness currently - that of doubting diagnosis!

I wish there was a way for the education system to diagnose verbal autistic children in mainstream schools who are high masking / low support needs e.g. by groups of schools sharing a panel of a specialist teacher, an SLT and a Clinical Psychologist (similar to the set up if you get private assessment).

I don't know that being fast tracked along the same system is fair or a good idea (high masking children are often suffering a great deal) but I know exactly where you're coming from. Children with such wildly different needs all being assessed in the same (NHS) system is creating huge waiting lists and absolute resentment between the different groups of parents.

In practice, in our area at least, the more high care needs children were generally assessed pre-school age by a Paediatrician because it is typically more 'obvious' (e.g. no speech at all by 2.5 years etc). This is a good idea because Paeds can then spot potential genetic issues that often go along with this kind of presentation. Lower support needs children then got diagnosed by referral from school to CAMHS. This is all rapidly changing though as more and more parents are empowered to spot signs early regardless of presentation. A good thing in many ways but contributing to massive waiting lists and the situation you describe in your OP.

Of course all kids are individuals and ASD in all guises can present in so many ways BUT once diagnosed, surely the bigger picture is about getting each child what they need at any given time. Does a diagnosis change that in any way?