Capping the number of children diagnosed with autism

[roundtable]

Did I just hear that correctly on the news? The couple of sentences that they gave about it before moving on.

I'm hoping I've misunderstood but wtf?

That is not reasonable.

So once we've limited the amount of people with autism, what group of people do they move onto next?

Did I hear it correctly and are they being completely unreasonable? Without a doubt

But surely even if a parent pushes and pushes of theres nothing wrong there dc shouldnt be diagnosed.

Whirl they likely won't be but in the meantime costs of doctors, assessments, CAFs have mounted up taking money away from others who actually needed it.

Plus, people are not always truthful and I'd imagine lots exaggerate to get the outcome they want.

I don't see how a child can be diagnosed even with the pushiest parent.

Dd had to see so many specialists, a consultant paediatrician, speech and language therapists, portage etc.

The decision to diagnose her was made using the indiviadul reports of all these people plus reports from the nursery senco and her key worker and also my statements.

If all those medical and nurses professionals opinions had disagreed with mine she would not have been diagnosed.

But surely even if a parent pushes and pushes of theres nothing wrong there dc shouldnt be diagnosed

but they take up the time of the referral stages - which is where the problem lies, they get to take up time when kids with a real need are behind them in the ever lengthening queue.

Bog all would be done if they are referred and not diagnosed as autistic - some medical professionals are a bit wet when it comes to standing up to parents who won't take no for an answer.

Will it be a case of people needing to pay for diagnosis privately then?

Oh they have that one covered.

If you've been diagnosed privately they will say you just got the answer you wanted to pay for and won't recognise it. If it's not an NHS and LA diagnosis it won't count.

Even if the bloody private services previously worked for the Local Authority, were made redundant due to cost cutting and told 'go private, we're becoming a commissioning council and will buy you in, just without having to pay you sick pay, pension, desk space, petrol money, office accomodation, resources, etc'. But apparently no private service has professional integrity or anything like that.

Bastard idea every way you look at it, and purely about money. This needs banners in the street.

dont blame the clinicians, dont hate the paediatricians.
blame the cqcs and budget holders

the child can't be diagnosed with the pushiest parent, but they can be assessed

Where i am it works differently. You get 3 45 minute assementa done with a experienced nursery nurse and if they can see issues you are referred on and ifnthey dont they discharge and refuse to refer on. If the nursery nurse os unsure the pediatrician keeps an eye on the child but you arent refered to any other specialist till they are certain they are issues.

I fear this will result in more desperate parents going for private diagnosis so those that can afford it will be diagnosed and those that can't will continue to struggle.

some medical professionals are a bit wet when it comes to standing up to parents who won't take no for an answer.

In balance though, there are also plenty of Paediatric Consultants who stone wall with 'lets just wait another 6 months/3 years/I'm not yet totally convinced' even when there is an entire multi agency team and parents all absolutely convinced and pleading, and no reason to refuse.

that is a lot of responsibility to ask of a nursery nurse

I agree norma. When dc2 went though it i was very shocked that it was a nursery nurse who did his assesments.

I guess its the same as having TA's having more responsibility. and HCAs,
all down to budgets

I want to address the pushy parent thing too.
I have a child with ASD.
Until very recently I worked on the team that diagnosed children (or not) with ASD. My reports went towards the diagnoses but I didn't make the decision.

It is true, in my opinion, that there are parents who are convinced their children are autistic. They usually mean the mild, quirky, highly intelligent kind of autism. I have yet to see a parent claim their child is autistic with learning disabilities (ie. low IQ) push for a diagnosis.

BUT, claiming your child is autistic is easy. Particularly on the internet. There are lots of people claiming ASD with no other reason than they think it. Getting a diagnosis is NOT easy. Its no easier to get a diagnosis of autism than it is for plenty of physical conditions. You have to meet a diagnostic criteria.
In most areas there is a multi disciplinary assessment and reports are gathered from schools/nurseries and anyone with professional input.
Some children go to assessment playgroups over several weeks.

In our borough parents were routinely told 'we are not sure at this stage. Come back in six months for a reassessment'. Some felt they were being fobbed off but it wasn't for that reason. It was to make sure the diagnosis was the correct one.
Children would get dx with attachment disorders, learning delay, trauma etc NOT ASD.

I am confident that all of the children I was involved with got the right diagnosis.

They came from all backgrounds. Not just educated, pushy middle class ones.

Norma

Also down to getting rid of specialist teachers and specialist psychologists who used to do this work, but had unions, inconvenient pay and conditions, and were expensive due to their qualifications.

Being a "pushy" parent did get my ds diagnosed. In our area the GP made the referral and got a reply saying there was no provision for assessing children aged between 10-18 in our area. The GP failed to inform us of this so it was only when I called the children's centre to ask if they had received the referral that we found out. I pushed for a copy of the refusal letter, I pushed for an alternative assessment centre and I made a complaint to the health authority, it was being pushy that ensured ds did not fall through the cracks. He was assessed and given ASD diagnosis with comorbid conditions as well. Or I could have left it and not pushed? I don't think I could have. It is unfair to say pushy parents create an issue it was my response to the situation I was faced with I was not going to ignore the difficulties ds has or the problems in the referral pathway (lack of!).

I am assuming your child has ASD rather than you just fancied a dx though bigmouth?

Extra support for all children who need more understanding is needed , with the amount of children dx with asd it seems in many cases to just be another branch of normal as pp said. (obviously there are cases where a dx is important as specialist help is needed but in most cases a dx only benefits the parents.

It's a brilliant idea. I think there are too many people with broken legs too - let's cap that

I do blame the paediatricians I'm afraid. They are doctors, bound by a code of ethics which dictates they put their patient first. If they do not do thus they are clearly culpable and should be held to account. I am a lawyer and budgetary constraints would not be regarded by my professional regulator as an excuse for failure to fulfil my professional duties. I see no reason why the medical profession should be held to lower standards.

Hoping that my DCs finish the diagnostic process soon and that this is all a storm in a teacup. DS is very 'obvious' and I'm not too worried about him - DD on the other hand is typical of many girls on the spectrum and masks a lot of her issues. Doesn't mean she's not struggling every day. We've got her social communication clinic assessment next month and there will be further direct assessment of her, not just interviewing us for our own potentially skewed view of her behaviour. I just have to trust that they can see it. She can't fake the tests, I don't see how people can get unwarranted diagnoses really.

Diagnosis (as an adult) absolutely changed my life. I was very lucky that we have a fantastic local adult ASD specialist and she saw right through the issues that all the MH professionals had missed since I entered the system as a teen (I was even an inpatient in a psychiatric ward). My dad on the other hand was told by doctors in my hometown that he's too old to bother assessing. My specialist saw ASD in him when she interviewed him as part of my own assessment, but he doesn't live here so can't see her privately. And he needs it a lot more than I do frankly. He is not functioning at all.

People complain that there can't be this massive increase in kids with ASD but it makes total sense to me. No question where I got it from - my dad, and looking back my nan too. I see the same in many of our friends. ASD is so often misdiagnosed in the older generations as depression, anxiety etc (or those are correct diagnoses but they are actually caused by underlying ASD - absolutely the case for me, I was depressed and anxious because of all the issues my ASD causes) so lots of adults, who go on to have kids statistically more likely to have it, have no idea they have ASD themselves. But awareness is much better now, especially of how girls present differently, so it's no surprise to me that the amount of diagnoses has exploded. I think that has to be a good thing. How many adults have gone through life suffering due to nobody understanding them - due to not even understanding themselves. I am biased of course and I'm probably not being very clear as this is an emotive topic for me, but I really hope this cutback doesn't happen.

I think the aspect which concerns me most is at what stage do they decide not to put a child through the diagnosis process because they aren't 'severely affected' enough? Would that be the GP at an initial consultation?

We didn't have to push for a diagnosis, flagged up our concerns at 17 months, diagnosed at 2.6 years, statement at 3 years, special school days after he turned 4. But, very early doors I saw a GP about something else and mentioned he was being assessed and she said 'I see he plays with his brother, there's really no need for him to be assessed, he's fine.'

Obviously I just ignored her as she had no bearing on the process, but what if she was deciding the severity of my son's difficulties and wouldnt refer him because to her untrained eyes, he seemed fine. Makes me shudder to think.

I spent years being told I was a pushy parent exaggerating my dd's difficulties. Until the day I was told that lack of treatment had probably damaged her body for life.

I am sure there are people who imagine they have cancer when they don't. But nobody suggests that the right way of dealing with that is to cap the total number of diagnoses.

I see no reason why the medical profession should be held to lower standards.

to the lawyer who quoted the above:

This is the NHS and education system we are discussing. Full of budget constraints.

How on earth does this fit with parity of esteem