At what age can ASD be diagnosed in the UK?

[Soutty]

Hi

My DS is 4.5. I have been repeatedly fobbed off by professionals telling me to wait and see, that his speech delay may wonderously improve all by itself, that his tantrums may be down to a strong personality and boys will be boys, blah blah blah.

I have him on a VBA programme. Paying for a consultant but doing all the tutoring mysef - have seen an improvement in him but have reached the stage where I know that he either has a lanuage disorder or ASD or both.

So I have decided to pay for private assessments by a clinical psychologist and a speech therapist, both of whom were recommended to me by my consultant.

The CP told me when I rang to make an appointment to have him assessed that he is too young and that all the ASD tests are geared towards children aged 6 and up. Is it really true that no one in the UK can carry out definitive tests on children aged 4.5? Really?

To say that I'm pissed off is an understatement. I've just made the decision to get private assessments for him with a view to applying for a statement (as the NHS people "involved" if you can call it that - with DS have told me I have fat chance and no chance) in the hopen that I can say, there you go, deal with that you munters and it seems that yet again I've hit a bloody brick wall.

Sorry for the rant but is this really true and if not I'd be really grateful if anyone can recommend a good private CP that can diagnose ASD in the under sixes.

we got a dx at 3.9 but there are several mums posting here whose DC got a dx between 2 and 3.

my dc was dx'd at 2.8ish. and even then, that was afte delays (the paeds we saw knew that an ASD dx was likely, but still made us 'wait and see')

Daphne Keene has been used by people on this board, and is well respected.

DS was given a working diagnosis at 2.6 and it took a year to get it confirmed - mainly due to a 9 month wait for an ADOS.

nO, IT'S NOT TRUE. i KNOW A 4 YEAR OLD WHO IS DIAGNOSED.

Ds1 didn't get a diagnosis until nearly 7 and I am cross, because in hindsight it should have been obvious to any professional who methim (and plenty met him!)

Are you in the EAst Midlands, by any chance?

Ds was 3 and apart from his significant speech delay I would say his "symptoms" are fairly mild. I know of many children diagnosed at 2 and 3 so am surprised you are being told otherwise.

my ds was diagnosed at 2.11 - he's pretty mildly affected overall - took one meeting with NHS paed. If he'd been in the system soon he'd have had the dx earlier.

Most of the children I know were diagnosed between 2.5 & 4. I don't know if psychologists can diagnose though - here it needs to be a paed & you don't see CAMHs unless there are secondary psych issues.

Ds2 was diagnosed aged 2 years

My two were 2yrs and 3yrs when they were diagnosed.

The diagnosis was based on observations and assessments rather than a particular test, so I don't know if that makes a difference?

ds 2 classic autism dx was 22 months.

I think it depends on how obvious the signs are, and how long the professionals have been monitoring the development (or lack of). The more evidence that is available in terms of reports/observations etc the more easily a diagnosis can be given or refuted.

Hmmm. Perhaps it's just that under 6 they have to be seen by a number of professionals then. The Paed he saw in August ruled out ASD completely because he doesn't avoid other children. At the time I was in denial anyway so was massively relieved, now I know that the Paed was wrong to rule it out on that basis. DS is in the system but has had no checks since August and the last time he was observed by a SALT was in October.

Just pulling my hair out really. I don't know what to do next. I hassle the NHS to no avail. I decide to fork out to get answers and still get nowhere.

I live in Kent btw.

DS was diagnosed at 3.9.

Hi, I have two ASD kids now 10 and 13 yrs. My daughter was diagnosed at 3yrs 4 months and my son at 3 yrs 7 months. Both were seen by community paediatrician as well as other professionals. The whole assessment process took 18 months with each child. My CP (Dr Jaqui Gregg Alder Hey Hospital Liverpool) was fantastic. Our diagnosis was slow and thorough and accurate & rightly so. They have a DX that will be with them forever I didn't want to rush to that! I am so sad to read of the difficulties you are having. Please don't pay for private assessments demand a new referral to cp! These kids cost a fortune as it is! I wish you luck.

Oops, i forgot to say the National Autistic Society has some fantastic support and advice check out their website and there is a national ASD helpline 08450704004

Thanks for all your advice. I have left a message for Daphne Keen and hope that she will call me back soon

Soutty

Currently it is only ASD which can be diagnosed from about 2 years old all other developmental issues require a child to have reached the age of maturation which is 6- 8 years of age, by which time they will have grown out of purely the differently stages of natural development. (all children develop their different cognitive abilities and skills at different ages and at different rates until they reach their age of maturity, after which any remaining developmental issues can be clinically diagnosed as a life long disability.

So from what you have said the Paed has ruled out an ASD diagnosis so you will have to wait until the age of maturation 6- 8 years old for a clinical diagnosis of any remaining issues. There are a wider range of issues which combine to be the underlying causes of ASD, may be you should begin to investigate these individual issues for further investigation after your DS is over 6 years old, while also keeping records of your own observations.

I have a a list of research paper collections which includes some of the individual issues some of which can combine to be contributory causes of ASD. you could browse through these collections to try and identify some more specific issues.

DS1 was 3 and DS2 was only 2. Definitely being fobbed off.

Perhaps you're not being fobbed off and he really doesn't have ASD but something else?
My DD (3.5 yrs) has speech and communication problems but does not have the need for routine, order and sameness that ASD kids do....or at least that is what our NHS paed has told us.
We live on the border of SE London/Kent.

That was another reason that the paed ruled out autism - the fact that DS doesn't insist on having exactly the same routines every day. He doesn't like having things sprung on him, however. He poo pooed that as being typical of all kids. Maybe DS doesn't have autism but just because he doesn't tick every single box doesn't rule it out as far as I'm concerned - it's a massive spectrum after all and all children are different whether they have special needs or not.

Also DS was in a good mood and performed well that day. Had he seen him on another day he might have come away with a very different impression. Describing what he is like on a bad day and actually seeing it are two different things.

It may be that DS does not have autism but has a speech and language disorder instead. I'm having him assessed for that by a well respected SALT.

If he was my only child or if I had a younger one I might be inclined to wait and see and all that but I just KNOW something is wrong. I don't want there to be, I wish there wasn't but I've come to the realisation that thinking that way isn't going to help him. I keep being told that by the time he's 6 it will be obvious because there will have been trouble at school etc and that I can apply for a statement then if needs be but I don't think I'm being unreasonable in wanting him to have access to help now and as positive an experience at school as he can possibly have. It seems barbaric that everyone knows there's a problem, but no one will speak it's name or offer any help except to say just plonk him in school and wait for the problems to start.

Sorry to rant but it just seems so shit.

Dd1 given working dx at 5 an full dx at 6. Dd2 given working dx at 2 and full dx at 3.

You can also ask for a second opinion at GOSH autism team, I have heard nothing but good things about then

Is your son at school? How is he coping there? I have had concerns about DD since the age of about 15 months but it was her preschool who have got the ball rolling with SALT and the educational pychologist for her to be evaluated.
I understand that the ASD spectrum is wide and variable but there must be some key traits that must be present for a concrete diagnosis..?
I accept completely that the line between a speech delayed/developmentally child and one on the spectrum must be very fine, especially when the child is under 6 in age.

The delays in assessments, differences in opinion between the professionals themselves and the constant worrying, waiting and uncertainty is CRAP.