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.

alice, my DD (4.0) has a dx of classic autism. she is not obsessed with routines at all nor do things have to be done in a certain same way. she does not have trouble with change. for example, she started recently at a new nursery and settled there from day one.

however, her play totally lacks imigination and is incredibly repetetive. she does not do pretent play. her play is just so repetetive; she likes doing e.g. a certain puzzle overband over again or watching the same movie times and times again, her speech is very repetetive and loads of echolalia...

OP, the information you've been given about ages is incorrect ime, we got a dx at 4 (and it would have been sooner if we hadn't had to wait a year for ADOS).

DS has a dx of social communication disorder, he doesn't have ASD but is touching the threshold of ASD in some areas. In others he's NT.

have to go will try to pop back.

chocjunkie*, DD also settled in nursery (she's been in two) from the first day. Although she doesn't show any interest in her peers she does enjoy playing in a variety of different ways, water play, small world people, running in the garden, sitting and looking at books, joining in with singing and music.
Although we can't work out what she's saying most of the time she does hold "conversations" with her dolls and teddies and appears to be roleplaying a lot with her dolls.
Leonie, I would say from your list of examples of rigid thought, the only one which fits is her lack of curiousity in the world around her.
Ironically on paper her elder sister (5) has far more ASD traits IMO.
She thrives on routine, has a phobia of buttons, has to have her clothes put on in a certain order, can't bear for zips to be up, freaks out over hand driers, has horrendous tantrums over seemingly nothing. She is totally NT, no doubt.

alice, your DD sound very much like my DD. she also holds "conversations" with her toys (though it sounds more like she is lecturing them LOL), she loves waterplay and running around, she loves looking at books and always joins in with singing at nursery.

but DD does not do proper pretend play (e.g. feed the dolls and then putting them to sleep etc).

our dev paed told us until 1 month before the ADOS that she does not think that DD is on the spectrum. we pushed for the ADOS nevertheless. we just knew. the same paed who told us that is is very unlikely that DD is on the spectrum gave us a dx for classic autism following the ADOS

how is your DD's speech?

has your DD had any assessment? I would push for them or get a second opinion. don't waste time with "wait and see".

alice, it is very rare that people on this board suggest likelihood of ASD imo. Usually we/they are very cautious about suggesting it so I would take on board the opinions here.

I know nothing about girls with ASD except that they present very differently from the majority of boys with ASD and can take longer to get a dx, so won't give an opinion myself.

However, one thing that might be helpful to consider is not HER behaviour, but YOURS. What do YOU do to ensure your day goes smoothly with her? Is what you do 'normal' for a parent to do? Do have such a list of automatic behaviours to accomodate her and to avoid meltdowns that they no longer seem unusual but to an observer might?

Sometimes children cope with the day BECAUSE of the protection and accomodation and compensating of the parents. This is a natural parenting action and we all do it for our children but when the normal crosses over to the unusual or excessive, then there is likely to be something that needs investigating.

Perhaps imagine a typical day with your dd and imagine that for some reason you will not be there at short notice, with no time to plan anything. What would the list of instructions look like to the new carer? Would it make you out to be OTT PFB precious parent?

starlight, she really is the easiest child to care for. Possibly unnaturally easy and undemanding.
If someone was to mind her all they'd have to do is get her regular drinks and snacks, change her toys around for her, put on her choice of DVD, book etc.
She will happily outdoors, plays on everything in the park and will come home without hassle when it's time to leave.
Her speech (expressive) is very delayed although receptive understanding is good.
She will have short strops like all 3 yr olds but can be easily distracted.
That said, I do agree that she is almost certainly somewhere on the spectrum.
Our paed however doesn't agree.
We will keep on with the assessments and appointments. We have to.

Pretend play with dd2 means she goes into monotone American voice!! Dd1 never did pretend play.
A good book for girls with Asd is anything by tony Atwood

Just to update you all, I have now spoken to Daphne Keen's secretary and she has taken some details from me so I can book DS in for an assessment. In the meantime the Clinical Psych that was recommended to me has said that her tests don't start until the age of 7 but she can run an assessment which would give an idea of whether or not he is on the spectrum.

Given that I'm trying to get as much evidence as possible to obtain a statement I'm wondering whether he ought to be seen by both of them as well as the speech therapist. Will be very costly though - just don't know if it would be worth it or not.

I'd go for Daphne Keen and the SALT. Ds saw a SALT at London Children's practice and I'd say her assessment and recomendations were spot on! For now I'd skip the clinical pysch and see how you get on with the other 2.

Ds's 1/2 bro was diagnosed overseas at 2 and sent to a special kindergarten until 7 when he started school. It made a massive difference, as all the really hard work was done. He has always done really well at school and is turning into a well rounded if a little quirky young man.

My own DS got a diagnosis of "social communication disorder with Autistic Traits" at 6, though it's now clear he does present with all aspects associated with a full diagnosis. He's fairly bright so some of it is subtle and you have to know what to look for iykwim, and he has no expressive language delay. His progress has been nowhere near as good as his brothers and the difference in outcome caused by the delay in "getting to work on his issues" is very significant. (upsets me!). He still has a mountain to climb.

I bitterly regret not going for a private ASD assessment before my DS started school, if you can don't make my mistake.

What Boch said.

We have today seen the paed at the London Childrens Practice (having seen the SALT and OT there earlier in the week). (as I noted upthread, I originally wanted to go with Dapne Keen but repeated attempts over many weeks to contcat her/her secretary were ignored and I eventually gave up.

Anyway, we now have a diagnosis. the paed today, Dr Pullaperuma, said DS (aed 2.7) is ASD. As people here will know, it all feels really strange right now. It is what we wanted (and knew i our hearts to be the case) and yet it still feels like a huge blow, the last hopes dashed. He stongly recommended ABA. Earlier in the week the SALT, Jackie Harland, had recommended PECS. So now we are feeling overwhelmed and rather confused, I am not sure what to start organising now. We are going to the LCP for a PECS initial training next week, I supppose we will start with that. Not sure if I should start arranging ABA now too or what. Also, whether I should be considering moving him from his mainsteam private (very nice and helpful) nusery to some more specialised one?

Sorry if I have hijacked thread a bit. Feeling rather overwhelmed.

I would go with ABA/VBA. PECS may be useful too in the short term given the age of your DS but 2.7 is way too young to be giving up on speech. ABA/VBA will not work miracles but it will help. I've seen a pretty big improvement with my DS and that's without tutors and all that. I recommend that you buy a couple of books - first of all Let Me Hear Your Voice by Catherine Maurice for motivation and then Motivatation and Reinforcement - Turning the Tables on Autism which is a training manual on ABA/VBA.

My DS goes to a mainstream private nursery and is very happy there. If your DS is happy and the nursery can deal with him then there is no reason to move him just because you have a diagnosis suddenly.

Boch and Starlight: Thanks for your advice. I am definitely going to ignore the NHS professionals who tell me to wait for him to fail at school and get him a diagnosis asap. Apparently I will have to wait until May for Daphne but from what I've heard she is worth it.

Thanks Soutty. We are planning to go with ABA, although I am feeling a little daunted and overwhelmed right at the moment! I have already done quite a bit of research, contacted PEACH etc. Just catching my breath today, feel knowcked for six depite having expected the dx.

No we are not giving up on speech. The speech therapist Jackie said that 98% of children who are able to use PECS do develop speech, so I don't think from what I have been told that PECS will impair/prevent speech development. We are due to start PECS very soon so will get on with that while we set up ABA, I think.

The nursery is very helpful and I am planning to send a PECS trainer in there, and later of course ABA tutors once we have that set up, and they say that would be fine. So I would like to keep him there if at all possible...

Thanks for the book recommendations, I will get them!

PECS is pure ABA. the whole transaction/reward thing is what it is all about.

also, PECS does not mean you are giving up on speech. it can really help speech and communication come on - if I could change one thing about how I did things with dd1, I would introduce PECS when she was a toddler. she was dx'd at around the same age, and was not an effective communicator. she is now very verbal, but is still helped by 'seeing' the structure of language, and fascinated by building sentences etc (not PECS, just an aside about how she functions).

theDudesmummy: it is completely natural to be knocked for six by a dx, even when you are totally expecting it. I walked out of dd1's dx appointment, and cried. lots. on the street . and she had ben in the process for nearly 2 years by that point, and I completely knew she was autistic. but I still had that tiny little corner of hope, which was that I would be dismissed as clearly a totally crap parent, and that there was nothing wrong with dd1. take some time to absorb the news, and be kind to yourself.

if you already have the PECS session booked, I would attend (funds permitting). it will be very useful with ABA in general, imo.

Sorry, my bad. I didn't realise PECs was linked with ABA. Will try not to talk out of arse in future.

I contacted Peach too, they are very expenisve though and don't seem keen on the parents having much input. It wouldn't work for us personally as we aren't wealthy enough and I'm too much of a control freak to go off and have a coffee and leave the experts to it.

Soutty

You might like to have a look at Therapies for Children With Autism Spectrum Disorders from the US Agency for Healthcare Research and Quality (AHRQ) which may help clarify the types of therapy program

Where I learned most about ABA is by attending a Pyramid run PECS training course. My ds was verbal at that time and I only went because I couldn't make out what the mad NHS SALT was going on about making him use them.

Turns out I was right. She WAS mad but it also turns out that PECS isn't about speaking it is about COMMUNICATING and more importantly TO SOMEONE. So even though my ds was verbal, implementing the stages of PECS was instrumental in getting him to talk to ME, rather than throwing out words to the air/wall/ceiling.

And once I'd learned the theory behind PECS I had the strongest foundation in what ABA actually IS.

PECS is the most simplified version of ABA and covers reinforcement, motivation and the shaping of behaviour which with a small leap of the imagination can then be applied in a variety of other ways.

By the way, - just to reassure you all - everyone has problems with the receptionist................

Interesting. Maybe I should go on a PECS course then as this is exactly what DS does a lot, announces things or asks for help without directing his statements or enquiries at anyone in particular.

Hi Soutty,

Haven't read all of the thread so apologies if I am repeating anyone's advice.

My DD who is 5 did not have a dx before getting a statement. She was seen by a community paeditrician due to speech delay and attention issues. The CP said she would refer us to an educational pysch (this was when she was 4) but said we probably wouldn't be seen as the issues were not really serious. We disagreed and I phoned the EP and laid it on thick about how worried we were by DD's behaviour, lack of social skills, attention etc. EP assessed her in nursery and said ASD or AS.
We then applied for a statement and went to see a private clinical ed pysch expensive but worth it as he said NO WAY to ASD and more likely ADHD and Dyspraxia. We also went to a centre who privately helps with aba training they also said NO to ASD. They said that sure she does have symptoms of it but so does absolutely everyone!!
We got our statement, we got 1-1 classroom assistance with no dx I recently paid for a private clinical dx with confirmed ADHD but I am pleased to report her behaviour is modifying and calming down.

So longwinded way of saying can you not apply for statement NOW get an ed pysch out to assess and hopefully you will get help in place for start of foundation?

Just for some clarification.
Picture Exchange Communication System (PECS) had some of its early roots in applied behaviour analysis but is now considered to be an Augmentative and Alternative Communication tool used to help a wide range of communication difficulties. And any continued links with ABA can only be as one method of provision Picture Exchange Communication System (PECS).

There are also various forms of ABA or ABA methodologies and this unfortunately is hardly ever discussed on this forum. Which results in a miss representation and understanding of what ABA really is.

Dolfrog, PECS was invented by a BCBA. The only thing that has changed is that ABA has become more acceptable around the world the founders of PECS have been more upfront about what PECS is. In fact the first half of the first day of training is all about ABA methodology and ABA methodology is what is actually used to teach those on the course about PECS.

Whilst ABA can present differently depending on the context and needs of the child (and should do more widely IMO) the principles behind all ABAs are exactly the same. It is about the science of learning and the analysis of progress to ensure the most efficient path. In that way, ABA shouldn't differ even if to the outside observer it looks different. I.e one child sitting at a table with an adult whilst another child playing in a sand pit with 3 peers.

My son was Dx at 6.4yrs but I knew something was up at 2. It has been a long struggle especially since he is v v verbal and very bright, is charming 1:1 but no eye contact, tantrums over change/surprise, severe anxiety, aggressive at preschool. And obsessive interests (ooooh,yes!). We were told repeatedly by HV/school he was not bright (as he refused to work at school or anywhere other than home), just naughty (due to behaviour). He also never slept. As he became older the issues continued and his social issues more noticeable, and his academic attainment was off the chart. We asked the psychologist who Dx him to put 'ps I told you so' on letter to HV, haha!

Just keep fighting. One child in DS school was only just DX at 10, despite it being v obvious to those who already have ASD kids. DS has luckily compensated for a lot of things and learnt them 'intellectually', but on the flip side it was hard to DX and people don't believe us when we say he has AS because (their words) "he seems so normal!". Grrr... As his mother your instinct goes a very long way to helping with the Dx, and any good paed psychologist will accept that.