Just curious - autism diagnosis

[Tessasays]

Has anyone's child ever been on the ASD pathway, Awaiting assesment, and been told their child dosnt have autism at the end of it?

I imagine it happens a lot, but i went through it with my daughter, and at the start there where signs but I was holding out hoping things would change, and I was over reacting, but in the end she was diagnosed, I just wonder if anyone goes to the last meeting and is told, no your child dosnt have autism and if that's the case, what happens next? Because surely there's a reason they were put on the pathway in the first place?

Random Sunday morning thought.

Yes dc 1 was put on pathway, school didn't support but a psychologist, 2 consultants and numerous other professionals did.
After moving schools I was called in and was told we think dc has asd (such a relief), so had the rollercoaster ride again and aged 17 got a diagnosis. In hindsight (and after me and dd being diagnosed) I think the issue was he was presenting like lots of females do (so not typical male traits). Took me 15 years to get a diagnosis but it was worth it for him as he now has understanding and acceptance around lots of things.

Im glad it all got sorted, my daughter was diagnosed at 3. She's now 4 and a half and I think I knew deep down from the start (not birth 😂) like 18 months. I just wonder if asd assesment always = diagnosis

I work in a school and out of about 20 ASD referrals I've had accepted, one has come back as not meeting the diagnostic criteria. I don't disagree if I'm honest, but sad that there was no follow up, and no explanation given for his significant and pervasive social communication needs.

That's interesting so the majority will result in a diagnosis usually?

Some aren’t diagnosed. What happens then depends on the area and the individual’s circumstances. Some are just discharged. Some are discharged with advice. Some are referred onwards, e.g. for further assessment or support.

When looking at the diagnosis rate of patients who make it as far as a full assessment, you have to remember by the time a child actually gets to the point of having an assessment, the case has been triaged.

My DS had his first ADOS at aged 4. He was told he didn't meet the threshold for a diagnosis but he wasn't discharged. He had his second ADOS at 9 and then did get a diagnosis.

In order to get onto the wait list for a diagnosis, there is a fair bit of gatekeeping so I imagine by the time they're on the wait list it's pretty clear most of those DC will go on to get a diagnosis.

However, an autism diagnosis is a subjective thing. It's not like being pregnant for example where there's a clear yes or no.
I have known at least two DC where it was very borderline - the parents were told this. In both cases the team diagnosing went away to consider their decision and speak to teaching staff/ the parents again. Both DC did get a diagnosis.

I have also known a couple of people who had concerns that their DC had autism but it then transpired they had hearing difficulties/ SALT difficulties. Those DC didn't make it onto the actual ADOS waitlist though.

Yes this happened to us.

We were discharged. Peads dr said not to say he wouldn't be diagnosed in few year time but at the moment in time he didn't agree he was.

We recently put a CAMHS referral in and were knocked back from that.

At my daughter review appointment he said "so let's get the big question out the way first. Diagnosis. So we as a panel have reviewed your daughters case and we've concluded that she meets all criteria for an autism diagnosis

Yes. But they refuse about 3/4 of referrals, so the children who actually reach assessment have already got past that stage.

For adults in my area about 60% of ASD referrals result in a diagnosis (they published a report recently as part of a funding review, as you all probably know, people with disabilities are too expensive). For children I think the rate is significantly higher but thats because you have so many more hoops to jump through first. There is also a longer wait for children, up to 5 years, whereas immediately post-covid the adult waiting time was under a year, now more like 3 I think.

What's happens next if you don't get a diagnosis? The same as if you have a diagnosis I imagine, you get given the report and told there isn't actually any support available anyway but at least you know now.

My DD was diagnosed around six months ago at nearly 8, through a private provider via Right to Choose. They initially declined the GP's referral due to insufficient evidence from the school.

However, the school had originally referred on the NHS and we had had an initial triage appointment with a community paediatrician who had recommended she be assessed, and was put on the NHS waiting list.

So I was able to appeal the RtC decision with the evidence from the paediatrician.

But anyway, when we had the letter confirming that she was on the NHS waiting list, it stated that (presumably in our area), 4 out of 5 children who went on to have the ADOS received a diagnosis.