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

The child described by OP is not attending school "normally"

The waiting lists in Northern Ireland are several years long at least.....

The waiting list in my area is around 2 months currently.

You are not at all unreasonable in my view. Your son obviously has great needs. The 'autistic' label has been so freely bandied about in recent years tbut there are many degrees of autism and at the highest end, it is a real disability which must be acknowledged.

Anyone who knows an autistic child, as opposed to a child 'on the spectrum', with Asperger's or similar, will realise what a really big disability it is and how it takes its toll on parents/families.

Poor lad and I sympathise with you both.

Keep campaigning, join forces with other parents who have autistic children, and if there is anything I can sign, please point me in that direction and I will. I do know and have known autistic children both socially and through work.

In these cases, it helps to be rich but most people aren't in that bracket.

Such children (and adults), are amongst the most vulnerable in our society and it is incumbent on us all to do our very best for them. It could have happened to any of us.

Good luck, op, and keep posting.

At 2 my DD is on a waitlist for paediatrician, immunology, dietitians and speech pathology. Why should I have to wait longer too if people have not decided to look into their child’s health

If you're autistic yourself as a parent, you may not realise there's anything unusual about your child because they're just behaving in the same way as you.

There are also many parents who have no idea about autism and wouldn't know that to look for when it comes to their child's development.

My dad is autistic and it runs in our family, but it never occurred to him that my behaviour was also a sign of autism because it was just normal for him - that's not uncommon. In fact, many parents are only diagnosed themselves when their children end up getting a diagnosis.

Yes, you can and I do - as I said upthread it was life-changing for us. It does take a bit of a leap to start giving it as I think most of us would rather do so under the supervision of a prescribing doctor. Someone who has never had to try and access these services might very reasonably think that all it takes to get a prescription is a GP appointment and in my experience people are very surprised to learn that this isn't the case, so I think it's worth pointing out when it comes up.

@Anisty did you completely miss the bit where OP is complaining about other children taking priority on "the list" when they attend school "normally" and therefore she thinks they can't be negatively impacted like her son? 😬

There’s going to be plenty on the waiting list for appointments who are struggling just as your child is.

I do have a lot of sympathy for you and your family though as while my child is currently pretty much settled in his day to day life right now as things have been mostly sorted for him, it hasn’t always been that way. Have you contacted the speech therapy dept or the paediatrician clinic to see if you can be seen sooner? Not saying it will definitely help but it might if you’re specific- the sleep for example as that is no doubt having a knock on effect on everything else for both your child and the rest of the family. Everything is so much harder when you’re all exhausted. Lay out everything he is struggling with and how it’s affecting him. I’ve done this for my child more than once, and while it was a further month or so after I chased it up until the appointment at least he had a fixed date to be seen in person so we could address everything.

Asd is a neurological condition that affects daily life. No one on the wait list is without struggle.

My son was nonverbal and in nappies until 7 should he have jumped the queue above your son?

The point of seeing the paediatrician is to determine whether an asd referral is necessary.

My area did actually do fast track pathway for kids with severe/ complex issues. This was after the paed appointment At the time it was about 6 months compared to the year wait on regular pathway (this was pre COVID) As my son was 2 they decided not to fast track him although his struggles were severe as they wanted to give it the year to see what changed. It was the paediatrician who made the call.I accepted the decision.

Btw not much changes once you get diagnosis. We were signed off pathway team and discharged.

Ds was already in speech and language, the ehcp was already underway and we had a Sen plan. Ed psych and ot were involved . We did our research/training etc pre diagnosis so after everything stayed the same. There's no magical intervention unfortunately.

Is the ehcp in place? If he's not coping with mainstream what has school said about a Sen school? Does he get 1:1? Have they applied for additional funding?

Did you not read my post …. I said most families which implies not all

in my experience (raising 2 children with asd) having a child with special needs actually DOES affect your income. The op has stated that her child is currently in school only part time. This is not unusual and means that a parent will find working al but impossible

Autism is also heritable which means it’s more likely that one or both parents might have traits and this, in turn, makes professional employment more difficult for them.

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, and I know for a fact that people in services do, too.

Yes, I'm sure lots of them do. We've all heard the horror stories about supposedly qualified staff with totally ignorant and out of date views that bear no resemblance to the peer reviewed academic research and current knowledge of the condition because they haven't bothered with CPD.

SENCOs saying a child has no needs because they are "fine" at school and it must be a "parenting issue" because the child shows their distress at home. Schools saying a child's needs are met because they are compliant (in shut down or suffering debilitating anxiety) and meeting academic targets (because they believe that autistic people can't have high IQs). SALTs denying therapy to children because they can speak in sentences. Local Authorities breaking the law and refusing to perform EHC needs assessments or denying a child needs an EHCP when the thresholds are clearly met, to save themselves money. Children's Services refusing to allocate children social workers in the Children with Disabilities team even though the legal criteria are met in an attempt to ration services. CAMHS minimising children's needs and refusing to even accept them onto waiting lists.

We know that these services purportedly "disagree", but most of those doing so are doing to due to vested interests and toxic cultures prioritising money over children's needs and intentionally breaking the law, or are just so ignorant that there's no way they should be anywhere near vulnerable children's care in the first place because they do not actually have medical knowledge of the condition, yet believe themselves qualified to overrule doctors.

I can't think of any other medical issue where unqualified service staff would have the audacity to behave in such an arrogant and unethical manner, but you are right, they do mirror exactly the type of ignorance on this thread and many others like it.

this doesn't make sense. My child appeared 'fine' when she first joined the waiting list for autism assessment. Five years on and she is (now diagnosed) out of school and it is SEVERELY impacting her that she is autistic. Like many girls it was harder to tell when she was younger but as social demands became more complex she broke down unable to cope at school

I thikn more people should consider paying for assessment and support tbh - and yes I know not everyone can but - I know people who could afford to but think morally it's bettter to wait for NHS support. and that is just a waste of their time.

We paid in the end after waiting too long - best 2 grand I ever spent.

Autism resources should prioritised for the children most severely impacted as early intervention has been shown to help more for severe autism that moderate / mild autism. I’m sorry your son isn’t getting what he needs but the fact that he is going to school at all will be seen as a positive

The people I’ve spoken to are highly qualified medical professionals, who are drowning in people seeking diagnosis when there is no capacity. Switching to a needs-based model of care and education would solve a lot of this, but it would require investment. I don’t believe the diagnostic model is currently fit for purpose to be honest. 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.

I fully agree with you. Unfortunately the people who are clued up and shout the loudest get onto the system much earlier. This is an issue I see with my peer group. I have a friend who’s child should have received a diagnosis years ago, yet they are waiting 2 + years and the child may not even receive it before starting secondary. Things are falling apart big time for them and they are only just struggling on. She has had to give up work and they struggle financially. She should be in receipt of careers/DLA I would have thought. I’ve said that she doesn’t need the diagnosis to get an EHCP but school have said realistically it’s best to wait and they are unlikely to get one smoothly without a diagnosis. This is backed up by what SEND teachers that we know have advised. On other hand, I know several parents who are requesting diagnosis whose children are a bit anxious, etc etc. They’ve seen a TikTok and decided their dc are definitely neurodivergent. School have no concerns but they have nagged on so that the schools have essentially given in and agreed to start the process (probably knowing full well it will be batted straight back). But these ‘worried well’ parents are clogging up the system and this must be going on up and down the country!

@LoveSandbanks

Did you not read my post …. I said most families which implies not all

It does mean the majority though, I did read your post yes. Perhaps I worded my response incorrectly but you knew exactly what I meant.

At two my son had been seen be speech and language, paediatrician and dietitian because I worked with asd kids and saw the signs.

Not everyone recognises the issues and often attribute it to being a late developer or terrible twos. Also dependant on how good your health visitor/gp is and whether professionals are willing to back you.

I agree. And how can they tell whose needs take precedence until they start the assessment?

Are you suggesting a “pre assessment” where a decision is taken as to whether children go into the fast or slow lane, so to speak? Who would conduct that? What if they got it wrong?

I queried autism age 2. HV told me because he was hitting milestones and had good eye contact couldn't be autistic.

Oops 🤣

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?

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.

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.

Err so what's your point?

This

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.