Interesting first CAMHS appointment today

[debs40]

We had our first CAMHS today. I was amazed at how thorough the whole process is going to be given the stories I have read/heard about people receiving 'dx' after a chat on the telephone or one appointment with a paed!

We did a history check and went through sensory, play, routine issues etc. Psych spoke to DS and watched him play. I ducked out with her for a while so that we could talk privately. DS is 6 and not srupid and it seems odd to talk about these things in front of him!

It all took about an hour and a half. She had already told us at the start of the appointment that this appointment would lead to others as the local protocol was to go through a variety of assessment levels which includes interviews/observations by other individuals on the team, computer based interviews and questionnaires and videos to be made of DS playing which will be watched by 'the team'.

DS already has SALT and OT organised and this will feed in to the assessment process as there are various multi-disciplinary meetings as they go along.

At the end of it all, when all assessments are done, a decision is taken on any dx.

I am quite reassured that it is so thorough even it will be frustrating long!The psych seemed very switched on to SCD/AS issues too and said that DS was a happy boy as we were sensitive parents and were accomodating his needs which felt kind of nice!

I was so worried about the appointmnet so I thought I'd post in case anyone else is going through the same!

Good to hear you had a postive experience with CAMHS.

You may be interested to read what Tony Attwood, an acknowldeged expert in the diagnosis of Aspergers saya about the diagnostic process in his book 'Aspergers syndrome - A Guide for Parnets and Professionals'
QUOTE

The diganostic assessment takes at least an hour and consists of an examination of specific aspects of social, language, cognitive and movement skills as well as qualitative aspects of th child's interests. There may also be some formal testing using a range of psychological tests. Time is also spent with the parents to obtain information regarding developmental history, behaviour in specific situations. Another invaluable source of information is reports from teachers and speech and occupational therapists'.

I wrote this because the tendency these days is to apply a multi-disciplinary approach to diagnosis that takes away much of the responsibility for the dx from the actual diagnostician. A competent psych should be able to form his own opinion and issue his own dx on the strength of his own observations and from the type of reports mentioned above.
The need to call in 'teams' and to have 'levels of assessment' etc to may seem a good idea but I know many parents who have waited literally years for a formal dx while all these 'professionals' are personally consulted and asked to contribute their views. It only takes one differing opinion from one team member who may have very pre-conceived ideas of what behaviours constitute and what do not 'fit' to stall / delay the process.

While I am obviously in favour of dxs being as informed as they need to be to be 'safe' I really do think that CAMHS overdo it and that a competent psych should be permitted to dx on the strength of his own personal professional expertise.

Delay only adds to the wait for the correct support to be provided and only adds to the parents period of anxiety. I am all in favour of Tony Attwood's approach myself.

Best wishes

Sorry - should have instered END QUOTE after the first para.

Not quite there yet myself with ds 's assessment, still waiting for ed.psy. to see him at nursery, so cannot comment on CAHMS.
But i agree with Wet august, in my opinion "too many cooks can spoil the broth" and obviously add to the waiting time for a final dx. Obviously they need to be thorough but do we really need that many professionals to be involved???

Regarding my DS , so far we've had a verbal dx of asd following a lenghty appointment with the paed, who asked 100 questions and watched ds play. And several reports by SENCO, SALT, and nursery teacher, with more to come...
it seems already like a long road with lots of people already involved, and it's just the begining , we have our 2nd appointment with paed on wednesday.

It's good that you are pleased with CAHMS though

WetAugust. I have read the Attwood book and I don't think it excludes a multi-displinary approach, particularly in cases of children with complex needs. This was clearly the first stage in terms of a background history being taken and I think that accords with the suggestion that levels of assessment with a variety of parties should be undertaken. The formal ADI may take an hour or more, this seems a standard approach, but I would be surprised to receive a diagnosis if it is used in isolation - i.e. without examining baclkground, development, physical and sensory issues etc.

Indeed, the NAS says "[i]deally, your child will be diagnosed by a multi-disciplinary team. These professionals can help establish what is causing your child's difficulties - be it an ASD or something else". This is supported by the National Initiative for Autism (2003). Screening and assessment: national autism plan for children www.autism.org.uk/napc

I completely agree that this causes delay if overdone and it might be being particularly overdone in our case but I don't think my son is a 'clear cut' case.

Further investigation might also cut both ways. A child can make good eye contact and appear sociable in a brief meeting but have real problems at school with SCD or extreme sensory issues which need help by specifically trained individuals and further digging to isolate.

So while I can see what you mean about professional dithering and an unwillingness to diagnose using professional judgment, I would also ask what the rush is if a child is able to access help and support? They do not need a formal label in school for this and support via OT/SALT/CAMHS is not reliant on diagnosis

I would be concerned to hear of any professional prepared to diagnose after a brief session without significant background research over a period of time, particularly when we are talking of very young children whose 'quirks' may well be age appropriate

Thanks Debs40 for posting about your CAMHS experience. The post was really informative & helpful. Think I'm in favour of the multi disciplinery approach. Not sure I could trust one person to make the dx, as like your DS, my DD is showing a "prickly profile". The more the merrier.

Are there any professionals out there who would be prepared to label a young child with an asd dx simply because the child in question has a few quirks???
That is shocking!

I mean to get an asd dx, there must be impairments in the 3 areas of the triad, so these so called professionals who dx a child simply because of quirky toddler behaviours are a disgrace.

I work in CAMHS, not and as an ASD specilaist but have contributed to the assessment process on number of ocassions.

children are referred directly to the "social communication assessment and intervention team" after being assessed by an ed psych, a community paed and a SALT.

The diagnostic interview we do takes 3 hour long appointments with the parents it's v detailed. We also do a school observation and an ADOS (again I've only ever observed an ADOS as I'm not trained to do them). the whole process takes 6-8 months. After dx then intervention is discussion this is usually where the CAMHS SALT and LD psychologist will get involved.

We gets lots of complex non clear cut cases, often co-morbid ADHD, sometimes developmental delay, ocassionally attachment difficulties. I'm not a psychiatrust and there are always areas of dispute amongst them as to what constitues aspergers in particular. especially when adolescents come who're functioning ok(ish) but are a little odd for want of a better word.

In light of this it seems best to be thorough but I can totally understand parents frustrations, particularly when they've often been through so much already.

a clinical psychologist with specialist training in learning disability

I never suggested that children would be labelled on the basis of a few 'quirks' mysonben. However, anyone who gives out a dx on the basis of a short assessment is not doing a thorough enough job. Tantrums at 3 may just be tantrums at 3 unless you investigate more widely

Mixofmancunia - I'm interested to hear what you say. I have serious doubts about ADHD labelling. Is that really still a viable option?

Glad you had a positive start debs40.

Yes i totally agree, never a dx should be given with just only one assessment, especially in cases were the signs, symptoms, behaviours,... are quite subtle, as you say "not clear cut".

But sometimes even a team of professionals can get it wrong, a lady who work with me has a dd who is now 7, and got a dx of AS last year.
This little girl got referred to CAMHS when she was 4 because of concerns from her parents and staff at her nursery. My colleague said it took over 11 months of reports, tests, observations,... for CAMHS to say she has not asd, she is just a bit delayed!
Then only 18 months later after she started reception, things went down further due to lack of support because no dx.
Then her dd was found to have AS.

Obviously this is just one case , and i'm sure CAMHS more often than not do a good job regarding assessments and dx.

I think a lot depends on the competence of the team involved in the dx, and not just on the amount of assessments or reports done.

I just re-read my post and i don't want to sound negative about your experience with CAMHS.
After all i've had no dealing with them as of yet.
I simply stress a lot when it comes to lots observations , assessments and reports!
I just hate this state of limbo iykwim?

I'm glad you are finding them helpful.
Thanks for sharing your experience anyway.

I completely understand mysonben. Are you getting any support while waiting for dx? I think this makes all the difference.

Although my son hasn't started OT yet, the team gave me the head of the OT's number/email to contact her with any queries and the doctor has intervened at school so they have made a real effort to switch on to things.

With the reading I've done about dealing with sensory/routine issues, this has lightened the load and I do feel I have points of contact now so that I can go back to doctor etc with queries.

We're all treating the issues as real irrespective of any label attached, so that does reduce the significance of the label in a way. If that makes sense?

I've learnt to be bold and upfront and just pick up the phone and ask about waiting times and when we're likely to be seen. Ask about cancellation lists. Ask the hospital trust or PCT about overall target times.

It certainly helped us see CAMHS more quickly. If I don't hear back within a couple of weeks, I'll be back on the phone asking when my next appointment will be etc etc

Debs40, DS did get a bit of help this last term at nursery, by help i mean SENCO put in place an IEP and a few strategies to help with his lack of clear communication and understanding (visual timetime + a bit of makaton), he is also getting two 30 mins a week of "social skills" sessions with things like turn taking, sharing, eye contact,... from one of the teacher who is training to be a SENCO.
He also has SALT.

But we have not been getting any help to deal with behaviours at home, a couple of weeks ago i went to see the local clinic nursery nurse who runs the "behaviour clinic", and although she was well meaning she knew very little about asd and her advice didn't help.
For good mesure after the first paed visit , i was sent home with the NAS website address for source of info and that's it.

Still we have the second paed appointment tomorrow morning (that came sooner than expected, as she had said she would see us again in october) and i'm worried about it.

mysonben are you getting portage? I know people have mixed experiences with it but our portage worker is good & I have found it useful (it's the only help we're getting).

This pre diagnosis bit is hell

My ds (nearly 4) has seen SALT, had 3 visits with a paed, and 1 multi-disciplinary meeting, (also audiology, physiotherapist), next multi-dis in oct. I have been given a verbal dx, it's in my family so I suggested initially, not sure if they would have mentioned it otherwise. Sometimes it is not always obvious, but the paed agreed with me after a 5min session. However, there have been no mention of CAMHS or Ed Pysch. Should they be involved or is the paed enough. I find it all v. confusing the variety of methods/assessments people have, depending where they are. I have a 3Di interval next week, and this method v. rarely gets a mention. Been in the system 18ms now.

Sorry for being nosy, but mysonben what are your concerns for tomorrows meeting. surely it is a good thing? if it can provide help.

No portage as of yet, although it has been discussed between SENCO and nursery teacher, but SENCO referred us to ED.PSY instead ???
Still waiting to be seen , and as you say the pre dx time is hell.
So many times i wanted to just put a stop to it all, but i don't because it is clear DS needs help.

Jasdox, the paed has now got all the reports she asked for, and the meeting tomorow is to discuss whether to get a formal dx for DS (not sure what the route will be) but as i have a copy of the reports and they are all about "obsessional and ritualistic behaviours, parrallel play, short attention span and difficulty to engage in group activities, language delay with semantic/prag. difficulties..."

I felt sad everytime i got to read them, i 'm worried about what paed will say, because although we have decided to go along with a formal dx if paed suggest it, we understand the benefits a dx can bring, but worry about the "stigmata" a label can bring to a child who has mild problems
But then i'm a worrier by nature!

well I hope it goes well. I guess in some ways have the meeting brought forward means you do not have to think about the maybes,

I must admit portage has help ds alot. but in our area they stop it at the beginning of the new school year before 4y, so sadly loosing it, and worried it ds will start to regress. But if you have a dx i hear you can do the NAS early bird course, which many have found to be good.

I've told a few people and amazed how good the response has been, and has not changed anything. I guess it will get easier with time. But if you give people the benefit of the doubt, you might be surprised. There is a lot of action going on in the autistic community and very positive, as the no. of dx is on the increase. I am glad I had my son now rather than 10-15y ago, when little was still known about it.

Personally I think they delay for financial reasons but I am v. cynical.

sending [hugs]. keep strong.

Here's a list of the 'professionals' who failed to spot that my son had Aspergers and instead labelled him throughout his childhood as having 'emotional and behaviourial difficulties' - hardly surprising if no-one could understand why re was reacting in the way he was without any specific support for his undiagnosed condition:

GPs x 3
Health visitor
School Nurse
School Doctor
Countless teachers
SALT
Educational Psychiatrist
Clinical Psychologist
CAMHS Consulatnt Psychiatrist.

After his total nervous breakdown at age 15 he was formally diagnsoed privately in 3 hours by a Professor of Developmental Delay Disorders (having provided to him pre-assessment the reports of these so called specialists).

That dx was confirmed unofficially and independently by a different Ed Pysch who had read his history and spent 5 minutes chatting to him.

The formal NHS dx was issued after about 3 hours of assessment by a Consultant Psychiatrist.

So you can see where I get my jaundiced view of 'multyi-discioplinary' teams who, I believe, only serve to reinforce the reluctance of the weaker members of their team to make a decison. Which is why I initially posted the piece about Tony Attwood stating a dx should take at least an hour.

Startlight is right - it is the parents that dx. I did that and then contacted the Professor for a private assessment. Of course the 'professionls' don't like that because it takes away the mystery of the process, which after all is extermely simple. You get a copy of the DSM IV / Gillberg criteria and you (who after all is the expert on your child) decides whether or not your child fits the stated criteria.

Why on earth every man and his dog have to take 8 months doing this BEFORE they actually call in teh one person who is qualified to make a formal dx defeats me.

And why a Learning Disabilities Psychologist is even involved at all as they are in mix's area is a complete waste of time as Aspergers is not an LD per se, although it can cause specific learning difficulties - but that's for an Ed Pysch to determine and suggest ways of assisting.

No wonder, as Minx says, many of the children's spefic dx is argued ober by all these people truing to make a differential diagnosis based on their knowledge of their own specilaism.

It's about tim ethey bit the bullet - called in a Psych from teh start and let them exercise their professional expertise (assuming they have any). Only then do you need to look at comorbids etc.

But that's just my (very jaundiced) view.

I'm sorry you've had such a bad time and I totally understand where you are coming from. We'll have to agree to disagree on what is being said about an hour's worth of assessment though as I think although some cases must be obvious, others are much more difficult to dx. Indeed, there appears to be little academic consensus on criteria and dx procedure and the whole thing seems rather nebulous to me.

I also think that there are as many types of parents as there are professionals - good and bad - and that professionals see all kinds as we do. This will inevitably mean that protocols are devloped which are aimed at protecting children against erroneous labelling.

I can quite see how such protocols are used as a tactic to delay providing assistance and support. This is quite wrong and fortunately, to date, has not been my experience.