Length of time to assessment

[nenevomito]

I could really cry right now. Just got home from work to a letter from the clinical psychologist accepting DS onto his waiting list for referral and it says it will be at least 10 months!

10 bloody months. I asked for the referral in Feb, so it will be 13 months from me seeing the GP to getting him assessed. I'm just so frustrated with the whole thing.

Ringfencing the NHS my backside. The funding to the service has been cut and now I have to wait that bloody long for him to see someone.

and :( all at the same time.

So sorry babyheave. We are in a similar boat with a wait of 7 months for the assessment centre on the NHS. Its pants it really is. How old is your DS? Someone told me yesterday that they prioritise the ones who are trying to get statements for starting school which is why we didnt get an appointment sooner. Not sure if this is true or not. Health Visitor just cited lack of resources but waiting a year to be seen is unacceptable. Its not a good start to our journey with the professionals is it and explains a lot of why we may start out with a supposed 'bad' attitute towards them.

yes its true in my area, kent, that they assess earlier if you are in the statementing process. my tribunal for SA that got turned down last november got overturned in April by EP, Ed Psyche did 2 observation/ability assessments at our home, originally had developmental paed apt in July and it was bought forward to tuesday of this week as its needed as evidence for statement.

Thats very interesting as I need it for evidence for a statement. I've got the EPs report already and am due to go to the GPs next week to get OT referral so I could raise it with him then.

Its just so frustrating. Its been identified that there is a problem and so frustrating that there's such a long waiting list.

DS is 5 .

Just seen this after seeing you on Friday chat. That's an amazingly long waiting list, babyheave. We only waited 6 weeks back in 2002. I'm so sorry. Do they know you are in the Statutory Assessment process?

I have just applied for a statement so might contact them to see if it gets us seen any quicker. Glad I posted.

Apply for a statutory assessment and put down that clinical psychologist as a professional dealing with your ds' case. It might get you some action. If not, you will still be able to apply for a statutory assessment again when you get to the top of the waiting list.

We are in a similar position, DS 7 has been in the system for 12 mths, so far he has been seen/assessed by Paed x 2, Physio, OT, SALT, and EP. There are currently no paeds to cover this area as they have both left. We were told at last paed app that they were waiting for EP report before referring to CAMHS for ADOS but as there is currently no paed he is not even on the waiting list for CAMHS which I have been told is VERY long (18 mth) so were are currently looking at least 2 yrs before ADOS.

What a joke, we have decided to go private £600 and have an app in Aug. I know a dx is not the magic key to help (needs led hmmmm) but I can't bear this limbo for another two years. I will still have to go through NHS as well, the private dx (if we get one) may not even be accepted.

wow thats a hell of a long time we only waited 12 weeks and thats seemed forever when your anxious this must vary a lot depending where you live in my area you see the paed team to dx and have the ADOS done not CAMHS i had to wait 6 months i think to see CAMHS and didnt see them until after the final DX in the end , the whol process took years if you consider the first time i went to HV and GP and told the pre school i thought there was a problem but only when the school were eventually having problems too did i get taken notice of IYSWIM , im sure now tho all that would be even longer due to cutbacks even after DX and statement the continued struggle to get what DS needs and according to the statement needs an is entitled to still goes on and on its never ending, and no most LAs wont accept the private DX although if you can aford it why not but still as you say continue with the NHS one. in my DS case it was the paed team who all do separate testing then have a meeting to discuss and look at the ADOS film and decide if he meets the threshold for ASD and to what degree

Can I ask what ADOS is?

Also, is a private dx really £600? What would that cover and where would you go. We don't have a spare £600 at the moment, but we could save it up in less time than the waiting list.

I'm just getting so confused now about who does what and who actually diagnoses.

School got in EP - they can't diagnose, but the test results were indicative of ASD (1st centile for social relations kind of gave it away :()

The GP has referred me to the Clinical Psychologist - that is the 10 month wait,

At the meeting with school last week, they have referred DS to the SALT service, but asked us to go back to the GP for referrals to a paediatrician and to an OT.

So who does what? Who can diagnose and if I could go private am I really looking at £600 or is it more and who would I go to see and where could I find out where to access that help.

Its no bloody wonder that my head permanently feels like its going to explode.

I am not sure what ADOS stands for, it is play led and specific to age and verbal ability. The response given is then compared to what the expected response from an NT would be. For example they may ask about holidays and then comment that they are going on holiday. it would be expected that an NT child may ask when?where? etc or at the very least show some interest, whereas a child with ASD would most generally ignore (well I am pretty sure DS would).

It is a lot more detailed than my example and then the experts will watch the video and analyse responses, body language etc etc. As stated in my post we haven't had ASOS so my info is just from what I have read of other peoples experiance. The dx doesn't soley rely on the ADOS with input from all proffs who have seen your DC as well. There are other assessments such as DISCO but I know nothing about these.

The £600 is broken down into £450 for 3 hr appointment and £150 for the report. I don't think I am allowed to name who we are seeing on here but if you google sheffield, autism and proffesor you should find him. This is the only person we have priced up so I am not sure if this price is average. He is well known in the field od Autism/Aspergers.

P.S £600 is a lot of money for us but I feel it is worth it, no holiday for us this year.

ADOS is Autism Diagnostic obsevation shedule they get the DC to do some structured and semi structured tasks that they observe their behaviours and social and communication (this is video'd with your permision) i dont know if ive explained that very well then they also see Educational psycologist , speech and language possible OT ect maybe CAMHS and then they all have a meeting to discuss their findings im not sure how much different the DISCO is i would asume they are simular from what ive read but as far as ive seen from MN its more usual in England to do ADOS

It took us nine months from first seeing the HV to going to getting a formal assessment. That assessment was inconclusive and we are now on a 3-6 month waiting list for ADOS.

My problem was I was so deluded all along that I didn't realise/accept he might be ASD. I didn't get that we even needed a dx to understand him better and move forward. Even our inconclusive dx (after the inital shock and despair) has made family life easier.

At least you know what you're asking for. Have you tried writing to your MP? I suspect more parents need to get more politicians involved in this issue.

i know how u feel. my head also feels like it may explode !
we had one initial appointment with camhs and were told it would be 9-12 months wait for ds2 to see the asd team / psychologist.
things have deteriorated to the extent that ds2 has now become violent and is regularly threatening suicide.
i phoned them and said we absolutely COULD NOT wait that long like this.
they agreed and arranged for us to see an autism soacial worker who has now said we can see a psychologist in 6-8 weeks.
big difference!
someone told me on here that you have to shout loudly to get anywhere and they were right. x

just been given an appointment for the start of assessment. DD (13) was referred to PDDAG team by Camhs 18 months ago. The letter said they were clearing a massive backlog of referrals.

Interesting point about contacting my MP Oodles - I did write to him about the govt green paper and despite the rubbish and bland response to that, he did say that I could raise other concerns with him. May just do that.

I just want to make sure that I am chasing the right people and also be sure of exactly who it is that can dx.

This past 6 months has been bizarre. Going from not realising that DS's behaviour was indicative of anything, to coming to terms that it was, to seeing it in everything that he does, to the first round of assessments and just when I am coming to terms with it, the stupid rollercoaster gets stuck on a waiting list.

To employ a phrase I hate, but seems apt at the moment. "Its doing my foookin head in."

I just want to know who can actually give us a dx. I don't wait to wait 10 months to find that they are not actually the person to help.

I need to know how to handle some of his more difficult behaviour and find out who exactly it is who can do that.

So frustrated at the moment its unbelievable.

Babyheave, my understanding is that a DX can be made by a paediatrician or possibly a clinical psycologist, but that seems to be unusual. It has to be a medically qualified expert. Definitely not an Educational Psycologist, SALT or OT etc. Most often it is decided by a multi disciplinary team, including Paed and SALT and maybe CAMHS personnel using ADOS. The helpful courses, like Earlybird, seem to be only offered with a DX. I found it very frustrating, years ago, with only a 6 month wait for a DX after seeing the paed originally. Is there anyone you can contact, the clinical psycologist's secretary perhaps or your GP, who could tell you if they will DX? And if not, can you get on a waiting list for a developmental paediatrician as well? It does seem to vary from area to area.

I'm going back to the GP this Wed to get a referral to a paed recommended by the school as someone they have worked with before and also for OT.

I wish there was a definitive "This is what you need to do in your area" list that I could work though. I like to think I am reasonably intelligent and I'm finding it hard to work out, so something must be wrong somewhere.

I'm angry for you.

It seemed really simple for us, the HV referred us to a SALT at 2, we saw SALT at 2.8 (longest wait), SALT suggested we saw HV again, urgently, for a developmental check which we had at 2.11, HV referred us to paed, we saw paed at 3.1, shit hit the fan and we first heard the words possible Autistic Spectrum Disorder, and we had our DX after 3 observations at 3.7. He's now 11.7 so it was all outside school and GP.

Ds is unlikely to get a "diagnosis" at the moment anyway and it has left me feeling very very isolated Ds has a number of behavioural and emotional difficulties. His behaviour at school in particular is very very difficult. He is currently on action plus and has had a 1:1 TA for 20 hours a week since the second term of reception (he is now in year 1). Given the difficulty most people on here seem to find in getting 1:1 allocated, this is probably an indication of how difficult ds is in school. The school have just put in a request for a statement (with our approval and consent) and we are now starting down that route.

He has seen the following professionals:
Private dev paediatrician who assessed him as about a year behind generally and also with some gross motor skills problems but we didn't pay for a specific ASD assessment because we had an nhs appointment come through so decided to go with that.

Behaviour support person - She has visited and once a term since he was in reception. I am not sure her suggestions (mostly sensible behavioural stuff) have had much effect

Two OTs (one nhs, one private) - both of who think he has SPD and also gross motor skills problems

An EP - who suggested Autism/Asbergers (the school thinks this is the case)

A SALT - who found no specific language difficulties (which I could have told her!), though she said that he should be tested when older to see whether his language skills had developed appropriately.

A community Paed - She did an assessment for ASD and ADHD and looked at all the reports from the above people. She had said that he did not score highly enough on either of the two tests she did to warrant a diagnosis of ASD or ADHD. However based on his behaviour problems in school she is going to ask CaMHS to do an in-school observation and for them to assess him, though given our experience of CAMHS aropund here this could take forever.

At home we do all of the following

• 15-25 mins extra help daily with reading and writing on top of what the school give (which isn't much tbh) Ds does this without too much complaint.

• OT exercises - 20 minutes daily as well as additional stuff as and when needed
• I do a social skills game or story with him a few times a week. at the moment we are focussing on personal space and appropriate ways to get attention.
• Use visual timetables at home to help with morning and evening routines
• Collaborative problem solving with DS on specific incidents at school. I have been having some success recently with getting to what is causing the outbursts. This is a big improvement on "I don't know" which is what I used to get in the past if ds was asked about why he had done something. Solving the problems is more difficult though!

Ds has stopped hurting us (hasn't done so for around 18 months) and is generally reasonably co-operative at home but I am not sure how much more "school" I can take. Ds seems reasonably happy to go to school but I dread drop off and pick up. So much so that I am beginning to spiral down into depression (something I am prone to).

What do we do now? I feel like DS is on this round of assessments and report writing, none of which is giving us a diagnosis or more importantly any real way of helping him.