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.

Soutty

you have hit on another not really discussed problem in the UK.

"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."

The issue here is the age at which formal education begins. In the most advanced countries formal education begin at 7 years of age when the children have reached the age of maturation, and have developed their cognitive skills and abilities, and had time to develop alternative skills and abilities to compensate for skill deficits, as you say all children are different with various strengths and weaknesses. It also allows those who do have some form of information processing disorder to be identified, and have some of support, and have information presented, and teaching provided more in line with their learning needs and abilities.

This would help all children especially those whose difficulties can not be clinically diagnosed until after the age of developmental maturation. This the fault of the UK government for not understanding or not wanting to understand the science of how we learn.

the flip side to that, dolfrog, is that the OP's ds could have a proper thorough, multi-disciplinary assessment, and have some help in place for when he starts school (if he hasn't already)

there is absolutely no need to wait until a child is failing before putting in appropriate help. that is the problem with our education system. there is never enough support until you have thoroughly failed, and been demoralised.

if a child can be helped and supported appropriately, for their needs and their level of attainment, then there is no need for them to ever feel a failure, or demotivated, or anything like that.

OP, FWIW, I agree with you, and had similar arguments re: my own dc. I did get the dx early, but that is all - everyone recommended holding off statementing and trying the 'wait and see' once school had started etc. bollocks to that. help was needed from day one, and I did my best to ensure that happened.

Not sure which part of Kent you are in but have you thought about asking for a referral to Elliot House in Bromley? The Lorna Wing unit (not sure if that is the right name) is a diagnostic centre. Its run by the national autistic society so they should know what they are talking about. I'm in West Kent and our ASD consultant did her training there. I'm sure if you google it you'll get the contact details.

So Leonie, the need to have sameness/routine is not essential for an ASD diagnosis or this is something individual professionals can decide whether to include or not?
It all sounds really flakey and vague...

What I don't understand is how criteria for a solid diagnosis can vary so much from paed to paed. Ours has stated that need for calmness/controlling their environment/routine is absolutely a essential for an ASD diagnosis.
It just feels to me that another paed may say DD is on the spectrum but a different one may say "no way."
This is an so important to our children. I feel less than confident in the ability of anyone to diagnose my DD.
How does developmental delay differ from autistm? I am genuinely baffled and the more I search for answers the more confused I get.

Aliceinboots, my Paed was the same as yours. He said he didn't meet the criteria because he didn't insist on a rigid routine and because he doesn't try to play by himself whenever other children are around. I took that at face value at the time but having done some research since I've read that there's a huge variation. DS wants to make friends but doesn't know how. His approaches are clumsy and a bit weird and children his own age are starting to shun him/bully him. That is just as much a symptom of ASD as going off on his own and completely ignoring other children. He IS very controlling and he does like routine and a calm environment but like Leonie Delt is happy to try new experiences most of the time. My paed said that what I described was nothing more than a typical boy. He was also very affectionate to me during the appointment. Autistic children show no affection apparently. All this is just stereotypical bollocks.

I live in Tonbridge in Kent. I am making an appointment to see Daphne Keen who others on this board have seen. Having checked her credentials she looks like she knows what she is talking about and if she says he doesn't have autism I will accept it happily. I spoke to her secretary today but she was just about to leave so is calling me back tomorrow to take more details. I hope I can get him booked in. There is a waiting list until May :(. Speech therapist booked up until April too. Wish I'd made this decision a few months ago but I really wanted to believe that it would all be okay because he was making progress.

Am questioning now whether paying for a private assessment from an authority in ASD (particularly in girls with speech delay) may not be the way forward.
I honestly don't have much faith in your standard community paed/SALT to make an accurate diagnosis.
Like you I will accept the opinion of someone I have confidence in to make or not make a diagnosis.
The waiting lists on the NHS are horrendous and once you're in the system everything happens at a snail's pace.
My DD starts reception in September 4 days after her 4th birthday.
To say I'm concerned is massively understating it.
Good luck soutty

But *Leningrad, is there ever such a thing as typical when it comes to ASD? The varying descriptions of children on the spectrum on this forum alone would suggest not.

marvinthemartian

The whole point is age, OP DS is 4.5 so has not yet reached the age of maturation so it is not possible to have multi-discipline assessment. So the education system needs to match children's natural development, and start formal education after the age of maturation. This will allow those who still have developmental issues to have the clinically diagnosed pre-school or just after starting school, and not 2 years in as happens now.
The age of maturation is when children stop growing out of development issues, and when clinical assessment of real disabilities begin. It is biological.

The need for routine and sameness is not in the dx criteria. It is a 'symptom' of the criteria of 'rigidity of thought' but there can be alternative symptoms such as only being able to talk on your own agenda or not being able to abandon a task you have started just because dinner is ready.

Issues which can be underlying contributiong causes of ASD and can appear ASDish but individually are not ASD include.
ADHD
Auditory Processing Disorder
Dyspraxia - Developmental Coordination Disorder
Hyperacusis
Hyperlexia
Pragmatic Language Impairment (PLI)
Scotopic Sensitivity Syndrome
Sensory Processing Disorder (SPD)
Specific Language Impairment (SLI)

There are more.

I disagree dolfrog.

of course a child can have a multidisciplinary assessment before 7. yes, children have different maturational rates across the board, but it is still possible to assess and diagnose before that time (harder as you edge towards the boundaries of NT, at times). or are you saying that all dx's made before that age are dodgy, and shoudl be reassessed?

once a thorough assessment has been made (against a typical developmental path, sure) then help and support can be given. it does not matter whether the help and support is being given to a child who will naturally outgrow whatever issue, or to one who will struggle all their lives. the point is that, at that point in time, the child is not performing as a typically developing child would, and therefore would benefit from some help.

extra help and support given to a child who would anyway outgrow their issues is not going to harm them in any way. not giving help and support to those who will not outgrow their issues is almost always detrimental. and it could be argued that leaving a child to find it's own way through any developmental hiccups it might be having is unnecessary - why not give support where needed?

I haven't ever thought 'oh, my child can't do XYZ yet, I'll wait until s/he is 7, and then see if it is a problem' - it would be an extraordinary thing to do, imo.

especially in the light of one of your other threads - highlighting how crucial intensive early intervention can be - how can you advocate waiting in the face of evidence like that?

I think it is important to check the credentials of the specialist you are seeing be they NHS or otherwise ESPECIALLY if your child is presenting a bit differently.

ASD is a physical disability Dolfrog and although hidden to a large extent, to those that know what they are looking for is identifiable well beyond the age of maturation by which time you have lost an important window of influencing the child's development and coping strategies to their detriment.

BEFORE the age of maturation

To follow on from StarlightDicKenzie the current guideline for an ASD diagnosis are best described in by THE AMERICAN ACADEMY OF PEDIATRICS
in Identification and Evaluation of Children With Autism Spectrum Disorders

However this could all change in 2013 when the new DSM5 is published, and the new narrower guidelines currently being discussed, could well be imposed.

StarlightDicKenzie

I am not disputing the age of diagnosing ASD, but those who do not meet the ASD criteria will have to wait until the age of maturation, as that when children stop growing out of developmental issues.

marvinthemartian

ASD is different to other developmental diagnosis. and ASD can not wait until the age of maturation.
However all other issues have to wait until the age of maturation because until that age a child can still grow out of such issues as part of their natural development. That said if there have been a history of medical complications such as severe ear infection or there is an existing family history (the genetic link) of a specific type of developmental issue then an earlier assessment may be considered by some consultants. But they need to eliminate that possibility that a child could still grow out of problem before the diagnose a specific life long disability.
The Education system should also be in tune with this so we do not expect children to begin formal education until they are fully cognitively developed and until it is clinically possible to diagnose and cognitive disability, so that the appropriate support can be put in place.

StarlightDicKenzie

ASD is diagnosed on the basis of observed behaviour traits, and as yet research has yet to define the precise clinical causes. There are many candidate genes and possible combinations of individual disabilities, but nothing has yet been defined. So currently causes unknown.