private asd diagnosis in london

[firsttimer08]

Can anyone recommend a good place where we could go for an asd diagnosis for ds? The HV and GP have asked us to wait, but the more i read about symptoms, the more I feel that something is wrong with DS.

We had first thought it was just a speech and language delay and had got in touch with Christopher's place who upon reading our detailed responses to various questions wanted to give us a full assessment. I would prefer though to take DS to a paedatrician / place qualifed in autism diagnosis.

Thanks !

I don't know, but the National Autistic Society website has details of people who can diagnose.

However, I would agree with the waiting for NHS diagnosis. Unfortunately, a private diagnosis is often ignored by people who are the key to getting help at school/ with speech and language etc. or in fact any autism-specific help at all. Or if you really want a private diagnosis so that you know quickly, keep the NHS process going too.

Good luck

Agree with giveme. LA's tend to ignore a private diagnosis because 'you can pay anyone to say anything!', so make sure you continue to fight for an NHS one, even if you get a private one for your own needs.

Write a letter insisting on an immediate referral. You need it on paper that you aren't happy to 'wait and see'!

When chosing a private paed, your best bet is to choose an NHS one who does private clinics and who has a good reputation. You will be better able to argue then that the diagnosis was genuine.

Good luck!

Another thing you could try is asking both the GP and HV in writing for their reasons for waiting. I expect that will move them along.

My DS was finally diagnosed with ASD in October at the age of 3.6yrs. We went through the NHS and I can understand your frustration - we first raised concerns at 18mths! We like you could recognise the symptoms in our DS. Having said that 'Givememoresleep' is right to get any help you have to wait for the NHS - now we have the diagnosis a statement seems to be more likely (or though not certain.) Has your HV or GP referred you to Speech and Language therapist? In fact, I believe you can self refer. I know the waiting list can be long but it did seem to help the diagnosis process along and getting some help for DS.

Another thought might be to approach BIBIC (www.bibic.org.uk)-they are a charity who assess children who have learning difficulties. They are doing the assessment free of charge at the moment and we are taking DS in February. We are hoping to get a clear picture of his strengths and weaknesses and some tips on how to handle his behaviour!

Forgot to ask. How old is he. There is a distinct advantage of getting him dx before school age. In fact there are advantages associated with any early dx for you and your ds. Unfortunately all of the advantages of a later dx lie with the LA and NHS.

thanks. ds is only 14 months so still quite early, but is showing some red flags. i have posted some of the signs and would be grateful to hear what you think of them.

i didn't realise though that nhs is still important for getting the right treatment. i thought that once i have the private diagnosis they would take my concerns more seriously, but it does not seem to be the case. its just that even with a private one, it will take 2-3 months to get an appointment, so i want to start now, so by the time ds is 18 months we know more about his behaviour.

Hi firsttimer

Only a fewapeds will dx before 18months as most diagnostic tools aren't assessed for use before that age; a lot of the real redflags are 'before 18months'as well,so most will ask you to wait until then.

It's true that LA'setc won't help necessarilyt based on a private dx however, most Paeds I know would consider that as enough to warrant a full NHS assessment. But most would accept a GP letter instead. Which is far cheaper, and beleive me with ASD the money can be spent many times over later on.

Can you list your concerns?

I have 2 with spectrum disorders (one asd one autism) nd a toddler who seems to me is going to get a dx of AS one day (those dx's come later); each dx took along time to gain but it was definitely worth the full assesment. Esp. as time does have benefits in indicating whereabouts on the spectrum a child may fall.

Thanks virginpeachy. The ones I have been asking around private paeds seem to be fine to do an evaluation earlier. I wonder if that is then just a money-making exercise or that they will just give us an assessment "that its too early to say" and "come back later"

My concerns are the following.

He does not:

• share much attention and plays independently mostly. He does interact more with dh and sometimes brings his balloon or ball over to him to get him involved.
• He does not engage in any pretend play at the moment.
• tends to watch other children in groups playing, he generally does not get involved as much "with them". He will play independently with his instruments etc.
• language comprehension is very poor and does not really understand us very well.
• no words, only babbling.
• respond to his name when he is involved in play, so it can take 1-2 times to get him to look up.
• does not show much interest in his books or would rather look at them himself than with me. He used to really enjoy it before.
• does not have a v. long attention span and will only play with toys for 3-4 min tops. He does watch one particular baby einstein dvd for 15 mins or so before getting bored and has been doing so since he was 8 months or so. I've been reading other parents of autistic children also noting this long attention span for tv.

He does however:

• point when he wants something (started at about 13 months)
• point when he sees the bus or train or tube door opening (started at about 12 months). Don't think he turns around though to show it to us.
• looks at us fairly well and generally observes all adults and children a lot. Prefers adults to objects.
• he gets excited around other children but can indulge in physical play with them (like pulling them).
• he does try to kiss or cuddle other children and sometimes us (with me its more of a biting kiss !).
• can follow a point / whenever i point somewhere he will look up and look at it.
• loves to play peekaboo behind the curtain (without our initiation).
• he always put up his arms to be lifted and loves being carried out in general.
• he likes banging on his drum or other instruments.

also when i met my gp - he seemed really v. lost with what i was talking about and thought it was better to see the HV rather than him !! He asked me to make ds point, but i know i just can't make him point at random, he doesn't really follow any instructions.

Maybe i was not insistent enough about my concerns and should visit again in a month's time or write a letter as the posters are suggesting.

There'snothing there which coulodn't resolve before becoming a major concern however parents instincts are a valuable tool so you should trust yours.

You would struggle to get a dx on those at 14 months though.

Most GP's have poor understanding of ASD: I'm doing an MA in it and the course lecturer also does medical school training, he said that it oftens amounts to 30minutes total, but some training schools have dispensed with it entirely. he asked one class what autism was and the reply was 'As it starts with aut, is it linked to hearing? )

The poiinting is relevant for triadic pointing- where the pointee points to something, looks at you, then looks back at the object. DS4 got that recently (in the last 4 weeks), he is 20 months. DS1 andds3 (both spectrum diagnoses) don't really have it yet, at least without help or oddity, so is a good indicator.

Parallel play is the norm at 14 months and beyond so I wouldn't let that concern you, in fact parallel play tends to persist until @3.

Please don't think I am writing off your concerns- I'm not and I know first hand what it is to not be believed. My guess is that you get the most help if you wait until 18months as there is a big drive for dx around that age (evidence suggests early dx gores hand in hand with better outcome). If you think there are issues then chances are there are, but fingers crossed.

Does he attend a nursery or similar?

OP - let Christopher place do It !!!!
If it is Flower Assocaites still...

they use a fantastic well qualified and frankly lovely Ed Psych.

I used to take DS2 there. They diagnosed ASD way before I got it done through the Newcommen Centre - plus he gave me reallly brilliant help for managing DS2 in the meantime.

sorry - to add..

We had started at Christopher Place. Once we had seen the ed psyche he pretty much took over and he used to visit us at home. He gave us reports we were able to use withthe LEA and he subsequently helped diagnose and support the son of a friend who had aspergers.

clutching at straws, i hope you are right that there is nothing too dramatic as yet in these 'mixed-signs'. I am surprised then as to why the private places all say they are fine with doing an evaluation on a 15-16 month old baby (that would be his age if he gets a spot in 2-3 months time).

good to hear the positive affirmation on christopher's place. I am not sure who all is there, i'll check their website. However, don't you think its better to see a paedatrician than the psychologists?

why?

It surely depends on the experience and expertise doesn't it.
My sons Paed was a twat. The Flower Associates guy was bloody brilliant.

Not the one at the Newcommen I hasten to add.

I guess it depends what you are after.

I wanted someone to tell me what was happening with DS2 and how best to help him and give an overview of anything that may help.
That is what he did.

The much later diagnosis bythe Consultant Paed consisted of "of course he has autism" and then we were shown the door and told to contact our LEA.
I know which one I found most helpful..

Paeds versus Psych is irrelvant: what matters is a multi agency report (so see a SALT,OT also) and the diagnostic tools they use- usually the same.

I wouldn'tpersonally have great faith in a dx done as early as 15 months but I would see it as a good indicator of likely issues; you wouldn't be able to get much in terms of assessment of severity or likely outcome at this age. You also won't get much practical help from it, except maybe a place on earlybird and portage. Not that it jumps much later on mind, and portage has a great rep.

I'd be inclined to chat with the NAS first; I know notying of Christopher Place (based in Wales) so cannot comment there.I do know there are mumblings atm about higher dx at young age = higher rate of misdiagnoses but OTOH as the input is nothing harmful (SLT etc arenot going to cause any issues) the worst possible outcome imo is stress you didn't need. You have to baalnce that against the very real benefits of early imputof course.

what are portage and early bird? I am hoping though that I can still take an assessment with possible flags to HV and GP to at least put us on waiting list for NHS assessments, that way we can jump on the waiting bandwagon a little earlier.

Early bird is a course run for the aprents of pre schoolers with a newly dx'dASD child;portage is a form of therapy run for similar ages

It should count SWC, butthee areexamples of people on MN for example who have been unable to get the LA toa cceptprivate dx and ended up with much trauma; likewise PAeds.

It's solvable through tribunals usually but of course that is heaping stress upon stress!.

Paeds I know will only 'rubber stamp' a multi discioplinary assessment: that is certainly best practice in assessment now. Doesn't matter if the assessors are paidor NHS, but a good dx needs ideally input fromSLT, APed, Psych of some description,OT (sensory stuff OT do often V V useful). There can be more, of course.

Also firsttimer don't be fooled into thinking that when you get a dx this magical wave of help will emerge: it should, but doesn't. Most decent therapy costs £££ so if you can talk your GP into referral (and frankly they should just do it) then save the money for that.

thanks, i had got in touch with daphne keen too, said they can see us earlier in march, but would get back to us in the new year. I didn't realise that private cover can be used for this. I do have private insurance, but am about to change jobs very soon. Will ask dh to put ds onto his private healthcare (i think they have axa at his workplace) - i hope they can cover that. Does the private insurance also cover therapy?

virginpeachy the one at christoper's place will have slt, psych and OT but no paed. Sounds like it would cover the multi displinary aspect you mention.

I think i'll just have to put in more of a strong case to the GP about getting us a referral.

hi we went to daphne keen in november she was brilliant with my 12yr old and i recieved the report last week which will be a great help to get him into a small school!she assessed him foe aspergers but she thought he doesnt have it but has other things!

thanks for the info.
out of interest, how much does aba therapy cost? i can only surmise that it must be A LOT.