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?

Sounds like you did all you could. I don't know anyone that can be diagnosed on the spot but hope this Dr is right.
If you already have a failed special school placement than that's probably why you're in a battle to send him to another special placement. That or you've chosen an expensive independent.

No...

When my ASD diagnosed child misbehaved in school, had outburst, and disruptive, he received detentions, isolation, even 3 days suspensions...

What behaviors was he showing at school?

And an ASD diagnosis wouldn't have made him immune to the schools behaviour policy, no. It wouldn't have cleared anything up. There's tons of SEN kids in all mainstream schools and they're expected to uphold the same behaviour. You're very angry at the wrong people. The lack of diagnosis is not the problem here.

Yes this unfortunately, when DS was diagnosed at 11 we got a list of books that we could buy and the details of a course with a 9 month waiting list, nothing more. Nothing changed at school at all.

No

How would suing help your situation now? The successful ones that gain a financial reward do so as the money they gain goes to help support living costs for child/ adult. So traumatic births as an example which result in child living with severe physical disabilities. But this is obviously where there is a clear case for negligent practice and outcomes would have been different had negligence not been there. I am not sure what you stand to gain other than a lot of stress and a pretty low chance of winning.

Have you spoken to SENDIASS? They may be able to offer support with local provision

EHCP is based on need not diagnosis, DS has a diagnosis but no EHCP.

Just to clarify, he wasn't diagnosed 'on the spot' at age 17. Wrong choice of words.

He had another full assessment with Consultant in children's neurosciences, clinical psychologist, OT and SALT. 4 professionals. I obviously took him and was waiting while they carried it out. Consultant met me immediately afterwards and told me it was very clear and actually his words were 'astounding obvious' which was no surprise to me.

No, you don't have a case. Plenty of parents are told no your child doesn't have autism when they actually do.

@HufflePuffllePuff no the autism diagnosis would not have made a difference to the management of behaviour, a positive behaviour plan is what most use. Finding the trigger to the behaviour is always key, and as every autistic kid is different there is no particular autism way of dealing with behaviour. A very skilled psychologist would help but that would be the case whether autistic or not.

Honestly my view is that now autism is so broad that there can be very few specific support to ‘autism’ - it’s all about a child’s individual needs and fighting for that. Sometimes I find that people are even less able to respond to behaviour in autistic children because it is assumed that they will have so called ‘challenging behaviour’ and it’s not really tackled well, if at all. Teachers have no training generally in this area, and schools are often at sea about behaviour. I know of very, very few schools that deal with behaviour well, and I know loads of parents with autistic kids.

That is why groups like ‘PDA’ (pathological or extreme demand avoidance) started because although most kids were autistic there was little understanding of differences in ability to cope and behaviours.

If I were you OP, I’d be a bit wary of leaning on the diagnosis now that you have it as the key to unlock and help your son’s current challenges. Get help from support groups, from professionals, pay privately if you can, to look at your child’s SPECIFIC challenges and help them now. There is still time to really help turn his life around to be more fulfilling for him and all of you.

Would you even be able to? I thought the statute of limitations was 3 years on medical negligence claims (no legal knowledge though so happy to be corrected)

No, ASD can be very difficult to diagnose. Clinicians can’t diagnose if there is any doubt.

What are you hoping to achieve by suing?

I think your understanding of specialist schools and what they can manage is unrealistic

Most children on the spectrum do not attend specialist schools. Some children at specialist schoosl are excluded or managed out, regardless of how much support theyve had in the past or whether they've been in mainstream before

Channel your anger and frustration into moving him forward now.

No I would not as I don't believe him having a diagnosis would have changed the outcome. What would have changed the outcome is obtaining a very good, qualified and specified educational health and care plan (EHCP)- with that the LA would have provided direct funding to yourself and school so provide specified provisions for him (speech and language, occupational, life skills, mentoring, etc etc).

I don't necessarily blame school either. School have about 200 kids to worry about. That's why I tell all my friends not to rely on school at all. If you see something amiss, take it into your own hands. For example, if the school refused to send a referral for an ASD assessment, I would have gone through my GP to get this done etc.

No.

You would need to prove that he would have met the criteria for a diagnosis earlier, and it would be hard to prove that the outcome would have been any different if he had. It sounds like he was referred at primary and it was you that pushed for the second assessment - didn't secondary bring it up at all?

Even if they had formally diagnosed ASD he probably wouldn't have had an ehcp or a specialist placement.

The school sound more negligent than the nhs.

Suing is pointless

Yeah, go ahead and sue.

It sounds like a fabulous hobby to take your mind off reality. 🙄

Meanwhile, in reality, you could consider doing what so many posters have suggested: supporting your son to build his best life now.

No because it's not a disease that needs fixing, in fact the main reason people want diagnosis is simply to understand who they are. It's a label but not particularly useful in most situations in my experience. My dd was diagnosed at 2, trust me you don't get anything from a diagnosis

And you don't get an echp because you have a diagnosis. My dd didn't have one despite such early diagnosis!!!

We had a similar experience but I wouldn't consider it negligent. The diagnosis of ASD has improved so that may in part explain why this happened.

He'd have got an EHCP for a start and been referred to children's disability teams, had a chance of a specialist school rather than the Head of his mainstream school constantly trying to manage him out due to low level behaviour issues directly related to his ASD

Op, you could apply for an EHCP yourself and it's 'needs' based not 'diagnosis'. Google IPSEA and SOSSEN. I know how you are feeling, I have been through a journey with all my children and yes, some "professionals" teachers have beeen at fault. But it's better, for mental sanity and in some situations, to take responsibility. For example, my third child has dyslexia and he was not progressing academically and socially it was hindering him. I took him out and placed him within a dyslexia day provision which carried out an assessment/report and because of their help (and a number of things) he is at a dyslexia specialist school and is thriving.

Its not a suit you'd win.

I'm going to tell you something painful that I've never said on this site before. My mother successfully sued the NHS for medical negligence which directly and demonstrably caused my father's death. The money she was awarded was calculated based on the loss of earnings from his profession, including the promotion he was in line for. Its nothing to do with the pain we and he suffered. Its restoration for lost income.

Oh and if you see a different doctor tomorrow there's a chance he won't be diagnosed, many people like your son and my daughter are definitely a bit different but whether they meet the criteria for autism is subjective. In our case lack of language and classical autism traits were prevalent young, she then had 3 years of Aba therapy which I believe helped her.