To want to sue the NHS for not diagnosing Autism

[HufflePuffllePuff]

DC had full assessment at age 11, told did not have ASD. Assessment was a 2 years to wait, should have been referred earlier but school negligent and wouldn't refer.

Later reassessed at age 17 (after another 2 year wait) and told clearly does have ASD.

That they didn't get a diagnosis at age 11 (just started secondary school) has had a massive impact on education and has led to where we are now. No qualifications, no skills, no hope of a job, debilitating mental health issues, no living skills, spends most of the day in bed, won't go out due to social anxiety.

Now I can understand that in some people ASD is diagnosed late as it hasn't been picked up on.

This was though.

I knew from around age 2 but HV fobbed me off. GP said school must refer when issues started immediately after they started. School refused to refer until they were 9 because they decided he was immature and naughty.

Full assessment was done at age 11 but was told they 'didn't meet criteria' and why did I want a label anyway <side eye>. At 17, doc said he was very surprised at previous conclusion.

3 year time limit to sue is very close.

Would you?

You are understandably very angry OP but an ASD diagnosis isn't the ticket for an EHCP anyway. It's solely based on need. You also don't need a diagnosis for an EHCP, so the lack of one wouldn't really hold down in court. Having one, just like having the learning difficulty diagnosis, doesn't guarantee help. If there was no provision for that you should've pushed for it and asked for an EHC Needs Assessment. Parents can and do request them.

Unfortunately ASD is difficult to diagnose, there are going to be plenty of parents who would like to sue for the opposite reason to you. Wrongly being diagnosed. There's negatives to having a diagnosis too.
Seeing as you've had to wait this long for a reassessment, I'm assuming you didn't have the money for a private second opinion, therefore it's unlikely you have the funds to fight the NHS in court. None of your arguments would stand anyway and I doubt it would make it far into the process.
The sad reality is, the world is just very difficult for many kids with ASD and even with an excellent ASD school and tons of support, many kids entering the adult world are doing so without qualifications and with destroyed self esteem.
You sound like a very caring mother and coming from someone who's child was also utterly failed, give yourself a limit to how long you can be angry. 1, 2 days is ok but don't brew in it. Use the energy to help your son now.

Yabvu op. Just no.

No. I know nothing about autism, I am saying no because suing (assuming a solicitor took your case) would be extremely stressful for you and your family and would take years. Don’t do it.

My son has an ASD diagnosis. No ECHP, he's too bright. Definatly not referred to Disabled children's team...specialist school.....😂😂😂

If your child has got this far without a diagnosis, he would not have been entitled to any of the above with a diagnosis.

I think your understanding of ASD support is very limited.

A label would just be a label. We also have a severely autistic boy who was diagnosed at 36 months old.

Also you’re kidding yourself if you think a diagnosis would have got you an ehcp.

Discuss with a solicitor if it’s on your mind. Perhaps choose no win no fee or someone highly recommended so they don’t try and string you along.
from your description it’s doesn’t sound like you have a case, either that they were negligent in their assesment or that it caused harm (EHCP, mental health care, DLA etc are based on need and not diagnosis)

No I would not sue.

Partly because there is no definitive test for ‘autism’ so there is subjectivity involved, which changes over time.

And partly because you do not seem to have a clear enough case for specific needs that were not met. If your DS had speech delay for example, it could be more clear cut that no services or support would have a significant impact.

My DS had significant speech delay, and diagnosed autistic at age 3. He did not get any services for his speech delay for 4 years, and then got 3 sessions!

I could have sued I guess because there was a clear need and a clear delay from unmet need in a specific area that impacts everything else. But I just learned speech therapy myself. Not saying that was the right thing.

What do you hope to achieve?

I work in a secondary SEND unit and the majority weren’t diagnosed until late primary school or much older.

We have students coming in at year 10 or 11 and they are very obviously autistic.
I wasn’t diagnosed until I was an adult and because I had trauma it’s still not clear whether I have just autism or trauma or both.

I know many autistic students who don’t stim, don’t walk on their tip toes, don’t have food or sensory issues, aren’t hyperlexic or have photographic memories or obsessions and I don’t know how someone can diagnose them who don’t know them very well.
This is a massive issue with girls especially who mask and act ‘normal’ and how they think a NT person would act, so they get missed.

I assume that when they’re doing the diagnosis they need to tick boxes and if a child displays a certain amount of behaviours then they have ASD and if not there’s not enough evidence that they do.
It’s not like a broken arm where they have missed the obvious break on an X-ray.

My DD is autistic and I chose to keep her in a mainstream school and although I love working in a SEND unit, it’s very restrictive and I want my DD to reach her full potential.
Of course some children cannot and never will cope in a mainstream classroom or have a proper job etc so these specialist schools are good for them.

Instead of living in the past and thinking what could have happened.
Be thankful he’s now got the diagnosis and think about the positives of having a later diagnosis.

Yes I would sue them and the school

You don't need a diagnosis to get an EHCP (but helps) and a diagnosis doesn't necessarily lead to an EHCP. A lot depends on the school, what support they've put in place and what extra they need to continue the support. You should be focusing on the very poor support the school and senco gave you. Even if you'd had an ASD diagnosis the senco sounds very poor and it may not have made a difference. Did they refer you to the umbrella pathway? Schools have an SEN budget they use to support children. If they've used this then they should have applied for an EHCP. Unfortunately it is a bit late but you could still do a parental request for EHCNA and see what support you can get for further education to resit GCSEs

My daughter has ASD. If you felt so strongly against the NHS diagnosis then why did you not ask for an assessment privately? Could have still ending the same way regardless. A confirmed assessment wouldn't have changed his schooling or qualifications, an educational statement may have. Be grateful it isn't something like loss of limbs or something for goodness sake.

Why doesn't it need money to help with diagnosis and help for autism spectrum conditions and mental health support?

I think when your child is struggling you think that the autism diagnosis will be a golden ticket to help and support but in reality what usually happens is you get the diagnosis, get discharged... and then nothing, no support, nothing changes. An EHCP is needs based so the diagnosis is irrelevant and lack of diagnosis is not a barrier to getting one (obviously there are many other hoops to jump through to get an EHCP though). If your child needed Camhs support in the intervening periods between assessments then you would have been better placed to get treatment without the Autism diagnosis because getting treatment for mental health problems once they have the diagnosis is a nightmare

AIBU ? Yes
Would you sue ? No

As has been said, whether or not someone gets an EHCP is not related to having a diagnosis or not.
As you are aware, there isn't a specific test that can be done for Autism. The multidisciplinary team need to be sure there is enough evidence at the time of assessment.

Not necessarily.

massive impact on education and has led to where we are now. No qualifications, no skills, no hope of a job, debilitating mental health issues, no living skills, spends most of the day in bed, won't go out due to social anxiety.

My dc too has asd and this describes them perfectly but they had a diagnosis. A diagnosis didn’t provide a magic key or prevent these outcomes.

I get that you are angry, you are grieving for what could have been rather than accepting and celebrating your son for who he is.

What do you think would have been different if he was diagnosed OP? Schools are supposed to put things in place based on need, not diagnosis. Sadly his mental health issues are probably due to having ASD rather than ASD not being diagnosed, same for any social issues.

I would concentrate on moving forward now OP, what could help him now? He needs desperate help with the agoraphobia/social anxiety/depression. Anti depressants that help with anxiety perhaps, therapy maybe, he needs to see a doctor about it though that's for sure. That is the first things that needs to be sorted out.

Why didn't he get any qualifications? Did he miss a lot of school due to the social anxiety? Would he like to get qualifications? It's not too late, there are always ways no matter your age. Does he have any special interests that he could get more into or that could lead to voluntary work and perhaps later a job?

I would say look forward and find ways to start turning things around, you can't change what's already happened and trying to might just take a lot of time and effort that would be better used elsewhere.

I'm not feeling well so excuse me if this is a stupid question but if he had the assessment at 11, he's now 17 but the 3 year time limit is very close. When did the 3 years start?

I'd love to sue them for the cost of my private assessment when they refused to add me to the waiting list because they were prioritising children. But, frankly, I can't face it.

School had complained for years about behaviour which was clearly due to his ASD.

NOT throwing chairs or being violent before anyone jumps on that.

Secondary school Head used to say they didn't understand why he behaved like he did - what was I doing with him at home, why was he at school if he didn't want to learn? Was told his learning difficulties diagnosis didn't explain it.

Numerous detentions, (4 in a day once) isolations, positive behaviour plan which he could never get off of as expectations too high.

I think an ASD diagnosis would have cleared that up and given him an element of protection if not understanding, no?

I did apply myself 3 times for an EHCP, school wouldn't help. Third time successful in Yr11.

Put him in specialist school because couldn't before that without one, that broke down quickly as he'd been in mainstream too long. Still no ASD diagnosis and again 'why is he behaving like that'?

Currently in a massive battle with LA to get him in an ASD college. He should have been in one years ago.

YABVU! Did you not apply for an EHCP? You don’t need a diagnosis for that? What support did you request from school?

School don’t need to help for an EHCP. You can apply as a parent. That’s what I did.

I get it.

Court action for negligence is time consuming and stressful though. Rather than “should” you do it, ask what you hope to achieve.

Civil suits require a loss than can be calculated and SEN provision should be provided on need, not diagnosis, so the NHS’s failure to diagnose you son sadly has no bearing on the LEA’s failure to provide education.

Given that very little help is given by CAMHS to autistic children anyway, it’s possible that you would have ended up in the same place regardless. My son was discharged alongside his diagnosis simply because they don’t offer support.

Speak to a solicitor, but be prepared for them to tell you that the system isn’t set up for autistic children and that the failures, being systemic and cumulative, are not suitable for a simple negligence claim.

Its shit. I’m sorry and you are right to be angry.

You'd need to go to a solicitor specialising in education law, for example one of these - chambers.com/legal-rankings/education-individuals-uk-wide-1:22:11805:1

How did he present from toddler to secondary school age? I’m assuming he was “ok” and this prevented you seeking help earlier than age 11?

I think you would struggle to show any loss, even if you could show they failed in their duty of care, as everything is supposed to be needs led, not diagnosis led. (Although i would say that the diagnosis was a way to evidence needs as the document listed all my sons needs)