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

@StaunchMomma

£800 is cheap, let's not pretend otherwise

Also I didn't say it's not valid, obviously I have no details of who did the assessment, merely that I would question it - which I'm sure you did. Be prepared over time for it to be questioned again and again; like I said would question the validity of any private assessment.

You don't need to be offended or defensive here, my NHS psychiatrist sat for most of my first appointment and researched the private clinicians who did my various assessments before he accepted them.

The children attending school normally are then having meltdowns, suicidal thoughts and self harming at home. they just mask at school. This is why you can’t say that another potentially autistic child has less needs than yours.
there is actually a lot you can do at home to help yourselves until you can get help professionally. Assuming you don’t work? There are a lot of books and online resources. A routine, knowing what’s happening next, giving 20, 15, 10, then 5 mins warning before activity is over so they are prepared. Using a harness and lead, using sensory toys, trying very hard not to overwhelm them day to day. Using a sound machine. Not forcing them to do things they aren’t emotionally capable of. Etc etc

@StaunchMomma

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

No it doesn't but my comment was about not separating autism and Asperger's or diagnosing levels, nothing to do with what you have said here

Equally I question the validity of any private assessment

What? So when the NHS sends people to private providers through "right to choose" are their diagnoses invalid?

If someone receives a private diagnosis from doctors who do work in the NHS and privately are the NHS diagnoses they issue invalid as well?

What is it you believe, that multi-disciplinary teams of consultant neurodevelopmental paediatricians, SALTs and OTs are all colluding and faking the ADOS assessments when they do them privately? Presumably you've reported your evidence for these allegations of malpractice to the GMC and other regulatory bodies?

Do you also question the diagnoses made by private doctors when people have private treatment for cancer or hip replacements or other medical conditions? Or do you reserve this totally unqualified overruling of medical professionals purely for the doctors diagnosing autistic people?

@ZombiePlanet

What? So when the NHS sends people to private providers through "right to choose" are their diagnoses invalid?

No not at all, obviously those clinical staff have already had their credentials checked.

I'm not against private assessment, I have done this myself several times, it hi k I have badly worded my comment as I didn't mean any of the stuff you said. However when people are paying for an assessment it is actual vital to query the credentials of the person conducting rhe assement.

Everyone struggles.

My DC is very bright, he can mask to a point. But he’s also incredibly unhappy much of the time. Much of his time at home is spent very distressed about how we don’t love him, how he hates us, how he wants a different life. We cannot ask or instruct him to do anything without meltdown. It’s soul destroying.

Yes, he sleeps, he can read and write, he eats (albeit the same meals every day) and doesn’t stop talking. But his emotional needs are truly exhausting and overwhelming.

The sad truth is if you have a child with a disability you need to go private for everything. I was asking for an assessment from 11 months old, they finally put us on the list when he was 20 months old. I went private when he was 2.5. I only got offered a public assessment in the past month. He's nearly 6.

Yet there are also kids who are non-verbal at 5, need toilet training assistance, school’s a dream, and modern research shows they benefit the most from early intervention which we’re so crap at in the UK because every part of the assessment process is on the NHS so it makes it prohibitively expensive to go private and it’s swamped by parents whose kids are not as severely impacted. That is the truth and it is why the parents of children with severe autism are calling for the thresholds for treatment on the NHS to be increased.

It seems that many agree that the level of need and support is growing in the current cohort of children. I worry about what will happen to these children once they leave school, how will we, as a society, support these young adults ? It must be a huge concern for parents .

No, I think each case needs to be made individually and if there are cases of extreme concern, you’d hope that it would be ranked as a priority. However, as far as I can tell, to even get a GP referral means that each child has already been considered to have an extreme/urgent care need from the get-go. How do you chose between a teen with gender dysphoria who is self-harming every limb/stomach and has taken overdoses etc vis a vis a 6year old autistic boy with SEN needs not being met by his school because they have no funding/too few staff/not enough expertise? Both are extreme and distressing.

The issue is that there is not enough money, not enough trained staff, not enough being being trained and too many severe referrals.

This.

@orangeleopard

As your child is only in school part time, the school is clearly not meeting his needs regardless of whether or not he is diagnosed with autism.

You should ask for an EHC Needs Assessment. Information here:
https://www.ipsea.org.uk/ehc-needs-assessments

Model letter here:

https://www.ipsea.org.uk/making-a-request-for-an-ehc-needs-assessment

Include everything you have said on here including not being able to attend school full time.

Their "credentials" and the assessment methods used are always included in the reports. As they are for diagnoses via the NHS. There is no justification whatsoever to put any more weight on one than the other based on whether the NHS did it or not. We all know how variable NHS standards of medicine are! I have heard of great variability in diagnosis methods used by NHS staff. Surely if somebody wanted to check the "validity" of a diagnosis they would need to read the specific report to see the assessment methods used and the qualifications and experience of those who did the assessments.

My point is that these kinds of flippant comments discrediting or casting aspertions on a diagnosis based on whether it was done via the NHS are potentially very damaging. It has been known for Local Authorities to try to use the fact that diagnoses are done privately (often on the advice of the NHS neurodevelopmental paediatrician's initial assessment putting children on the autism pathway, and then advising parents to complete the diagnosis privately if possible to avoid the child having to wait several years to have it confirmed!) to deny children the support they require, so it is important not to perpetuate such attitudes.

My diagnosis was done a long time time ago by the NHS. My children saw an NHS neurodevelopmental paediatrician and then a private team to complete their diagnosis in a timely manner, advised by the NHS neurodevelopmental paediatrician per the above so that the chance for early intervention would not be wasted. I can tell you for a fact that their diagnoses were carried out by far more highly qualified and experienced professionals and far more thorough than my own NHS diagnosis.

Casting aspertions on private diagnoses in this manner also discourages those who can afford to do it from doing so, thus lengthening the NHS waiting list for everyone else.

No that's ludicrous, why should one child who's been waiting be pushed to the bottom if the list over another (unless serious medical issues)

Sounds to me you just can't handle the behaviours and you need to learn how to manage ect. Diagnosis doesn't mean you get more help either btw, and school seems your biggest issue you need to apply for an ehcp parents can do it theirselves if school won't. My sons in alternative provision within school.

Before anyone jumps on me my sons nearly 14, currently on 18 month wait list for autism diagnosis, suspected pda, been passed around since 10 on whether its adhd autism or something else, sees a camhs consultant every 2 weeks, has depression, anxiety and medications plus melatonin. Hes been referred for speech and language with camhs and still waiting because although hes verbal he cant communicate feelings and emotions. Some days are horrendous for us and others not so bad, but I sit and wait because I have done for the past 5 years and I know diagnosis won't change anything.

Any child with any extra needs will experience difficulties and all we can do as parents is try to be there as much as we can.

@ZombiePlanet

I'm sorry I really didn't mean that

Needs are exacerbated by lack of early diagnosis and intervention, lack of appropriate specialist support post-diagnosis, lack of appropriate support in schools to help children achieve the best outcomes, and lack of appropriate specialist educational placements for those who require them.

Redirecting resources from endless Local Authority teams working on "strategies" or "advice to schools" or gaslighting parents through expensive tribunal processes to instead providing appropriate support and education would mean better outcomes and far more children being able to live independently and contribute to society as adults.

As with everything in the UK, short term thinking resulting in poor long-term outcomes.

Hmm, I don't think you're unreasonable for thinking that children with the more severe behaviour issues that come with Autism should be put toward the front of the queue, like the poor lady who's child had broken her finger. Dad's needed stitches, younger sibling is covered in bruises, and she's broken her own arm.
The problem is, children like my own, also a bolting risk, a huge risk where water is concerned, completely non verbal at 2 and a half years old, not ready to potty train, but almost too big for normal nappies we can find, covered in bruises because he hurts himself, and sleeps 6 hours in a 24 hour period (broken sleep of course!) Cannot cope with being at the childminders (who he only attends for evidence) because he screams and screams, refuses food or drink during that time.... also have issues that need support, and if they keep getting pushed back, and back, and back they'll never get seen.

In our area we're already at over a 2 year wait... I know it's not longer than most other areas, but I've been begging someone to listen, and now they have its unlikely we will have a diagnosis before he starts school, and I've no idea where that leaves us with getting an EHCP

You can apply for an EHCP yourself without a diagnosis.

Not how it works. Haven’t seen one GP about my children’s autism traits - both my older children were initially flagged as having traits by a health visitor. She made referrals to other agencies including the local children’s paediatric unit. Medication for ADHD can only be given by a consultant so a GP wouldn’t be of much use unless the child is much older or even looking for an adult diagnosis (which is referred elsewhere anyway).

My youngest was seen as ‘possibly autistic’ from his one year assessment. Obviously I had to be proactive, but with two older children diagnosed any delays in early assessments were taking more seriously. He was referred to paeds by a HV at 18 months which wouldn’t have happened with my eldest (with speech and social delays present, not as a precautionary).

And someone who ‘functions well socially’ isn’t autistic. Someone who can mask highly daily but it’s having a high impact on every other area of their life should have the same opportunity for diagnosis as anyone else. Functioning is a false term, anyone can look like they’re managing by acceptable social standards, you have no idea what chaos it’s causing behind closed doors.

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.

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.

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.

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.

@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.

@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.