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?

And whether you do attempt it or not, I think even mentioning wanting to sue the NHS around your child should be carefully approached. It may make them feel like even more of a letdown and failure

I totally get why you would want to. The problem is, it’s a subjective assessment. There’s really no legal reason to hold the result from age 17 as more valid than the result from age 11. Obviously as his parent and with the lived experience you have the latter diagnosis is more important to you because otherwise you wouldn’t have pursued it.

In the future, testing for ASD will be a far more concrete affair using the genome mapping and fMRI methods in development, but there will still be those who previously would have been diagnosed not meeting thresholds. It’s just the nature of dimensional diagnosis. I’m sorry you’ve been let down.

Suing for negligence could finance extra support for your son and it might seem like a good idea but there’s no way to prove negligence and technically could lead to the latter diagnosis being the one that ends up challenged. So on that basis I wouldn’t put my family through it.

My middle child didn’t meet diagnostic thresholds at 11 (by tiny margins and I question the competence of the assessor - I do the same job!), but I decided to move forward parenting her as though it was a diagnosis - using the techniques and approaches I would have even if we couldn’t have the classroom support. We aren’t in the UK and there was much more flexibility for this. I explained this to her school who supported the decision. She missed a lot of school and spent a lot of time outside and with animals. I offered to withdraw her but they didn’t require us to. I think they wanted to keep the door open. She’s now 14, thriving in school, and has significantly improved self esteem due to her volunteer work with animals. I couldn’t have imagined her being as happy as she is today 3 years ago. Look for ways your son can excel, you know what you know. At least at the age he’s at you are no longer trapped by the school expectations. There’s no shame in it taking a little longer for him to reach independence.

Sorry but what exactly does the NHS owe you? This is not a viable case imo. Save yourself some time, money and hassle and move on.

You are being utterly ridiculous.

No, diagnosis is how your child responded to questions on a given day.

no. It won’t achieve anything. I’m not sure a diagnosis would have made much difference either. Some teachers would have been more understanding perhaps, but you as parents said you knew he has asd, I expect you have always treated him the way that helps him.

Absolutely not!
Although I understand your frustration bra cause I have two neuro diverse people in my household.
ASD or ASC is diagnosed using a strict set of criteria,the base line being a question and answer format that calculates the likelihood of ASC. This is then expanded on by observation and a report from speech and language.
all three combine to produce a result.
The questions are set, the criteria during observation is set and the speech and language tests are standardised.
Your son did not meet the criteria at 11, but things change and he did meet them at 17.
Thats your story. This is what happened.
No one was negligent.
There are thousands of similar stories out there and thousands of families pushing for a diagnosis they will never get because actually their children are not Autistic.
Suing will help how?
Concentrate on helping your son.

@HufflePuffllePuff hmm, I would speak to a solicitor and then decide. It's not easy to do though, very stressful, you certainly are right to be annoyed & to feel your ds has been let down, but it's a long road, don't do it without advice.
They will have to decide whether having the diagnosis would have made any difference to the educational outcome. School for example would have to put support in place even without a diagnosis because their criteria is to meet the need rather than the diagnosis. Having said that, if you have a diagnosis the issues are easier to understand.

We had a diagnosis at 7 for dd, made no difference to outcome, support in place but still left school with no qualifications. School in our case was rubbish

There has been a shift in focus I think, with diagnosis.My child was recently been diagnosed. Asperger’s is not diagnosed now. It is diagnosed as ASD. The same with other disorders. Also, some schools seem to be changing. More teachers are being trained so the reports from teachers are more relevant.

A diagnosis wouldn’t give him an EHCP. Very few get an EHCP.

Yes. You’re being unreasonable for wanting to sue. You wouldn’t stand a chance anyway, so you’d be pissing money up the wall. In the unlikely event that you won, you’d just be taking funds away from others that need it. He wouldn’t be getting a job aged 11 anyway and he’d still have the problems that he does now. A diagnosis isn’t a magic wand. You don’t suddenly start getting lots of help after diagnosis either.

No ! Why do you want the label for him. It may disadvantage him further and cause more stress

@HB8 🙄
No one 'wants a label'.
People do want to understand the nature of the issues in their lives so they (and others) can respond/manage it to best effect.

Not any real experience here, but did you define what is your ultimate goal and what are the sacrifices you are happy to make in order to achieve that goal?

Are you thinking to sue because of financial compensation? If so, how confident are you that the compensation will outweigh any financial cost you will incur? Plus factor in the emotional stress and as many people commented the energy needed that might need to be diverted from helping your DC going forward. Do you have a pot of money you are happy to write off if unsuccessful?

Are you thinking to sue on principle and money is not an issue? Then I believe you just need to play some scenarios through your head of how difficult and stressful the journey through the courts might be and decide how much you think you are willing and will have the strength to endure. Now imagine the scenarios you played through your head will probably be even worse. Maybe start a different thread where people can share their experience with complicated court battles and how they found it and dealt with it.

Once you had a chance to step back a bit, assess the whole situation and define how much are you willing to loose in the fight for what you feel is justice, taking into account the impact on your DC(s) make your decision.

But try to be a bit factual. Your posts sound understandably a little emotional at the moment.

As others have said, a diagnosis is irrelevant in the EHCP process.

DD has an EHCP, she got it without any diagnosis on the evidence the school put together of her need for support.

She has just got a diagnosis of ADHD, but nothing has changed in terms of the support she is receiving as that is already in place based on her needs, and medication is not the recommended treatment for her.

I am sorry the school did not meet his needs. I recognise we are very lucky with DD's school, and all too many children are let down by the education system.

An EHCP is very hard to get even with a diagnosis - not a given

Um, it's not "a label" !!

Easy Target NHS!

This is a very good post, and so hopeful also. I loved that you gave your child time with animals and they flourished.

I feel the same, it really is up to us as parents to advocate and create the right environment for our kids. The idea that services, NHS or schools will do this is naive and unrealistic. Also we usually do know our kids best - a lot more than a Head of a school or a teacher, or SENCO, they just don’t have the years of one to one care that we have. I think just about every single parent of a child with significant needs (no matter what the diagnosis) has to advocate strongly, a diagnosis is not a golden ticket at all and clinging onto that is absolving yourself and your child of the power to change things for the better.

No, NHS has money as it is.
From your post id say school was at fault.
If you in your heart knew there was something really wrong you should of asked for a second opinion.

Can't you see that your school was negligent and should have been held accountable? The way you broke your ankle may not have been due to negligence but their failure to get you medical attention has caused you lifelong issues that they should have compensated you for. You may have been able to help or treatment via a paid route, and the school would have acted differently next time. Their insurance would have paid out, the same insurance that they would continue to pay whether you sued or not. You suing would not have reduced the number of glue sticks available!

I'm surprised people are talking about emotional stress on OP etc when in my view main thing should be OP's child.

I could understand if he was mentally challenged and had no idea what was going on. But he's still fully sentient and intelligent, not in a coma!

I was like OP's child, a dropout spending most of my 20s in my bedroom. Although she never stopped loving me and trying to help me, my mother understandably had a lot of anger and frustration and resentment (that may have been at the system, but felt directed at me) I was acutely aware of every single day and moment.

If she'd talked about suing the NHS but not phrased it particularly delicately, I might feel like it was a confirmation of what a write off my life was. And the actual legal process will require you to go into detail about what an irredeemable failure his life has been, and that it will permanently never measure up to the life he could otherwise had, in order to prove damages. Plus, as he has social anxiety it may be publicly humiliating for him too.

Especially as this will likely not succeed, but even if it does, I wonder if it's worth it or counterproductive towards normalising your son's life. I'm not saying it's not, just asking you to consider what your actual goal is.

Anyway I wonder if you need his consent to sue as he's an adult now.

It’s not a label
My daughter felt enormous relief when she got a diagnosis. Getting some understanding and potentially help rather than being misunderstood or wondering why you are different does help with mental health. I have managed the condition and masked for years often giving myself a hard time and considering myself pathetic for not being able to do certain things. Having a diagnosis has helped me understand many of things that have happened in my life and has let me give myself a break. It helped us both recently at an attraction that staff allowed us to avoid the crowds and helped us. It’s not about having a label. Before my child was diagnosed, I had years of GP, teachers, friends etc telling me that all kids were like that/that I needed to set boundaries/just get her up earlier/all kids have tantrums - absolutely NO ONE listened to me saying this was more extreme and there was definitely something wrong.

I can honestly say I wish I’d had a diagnosis earlier. By comparison the OP has an earlier diagnosis for her son so this is good as hopefully now there can be positive action going forward. For those who are blaming too about not getting second opinion etc, it is not an easy path when you are on it. I have taken things on trust too

Just wanted to be clear from my previous post that I'm in support of diagnosis, I was diagnosed myself. However I think filing a court case about how irredeemably compromised (as you will legally have to prove) your son's life is and will be, when he's only 20 = a label. It may well be worth it, eg money for private healthcare, but it may not even if it succeeds.