ADOS test done - long post!!

[debs40]

This was a weird one. Long post sorry!!

Both of us turned up as CAMHS always ask for us both to be there but then got told only one of us could go in the room. This was a pain as DH had taken time off work and I had organised and paid for childcare for DS2 for the day.

When the two therapists came into the waiting room, we had just got a packet of crisps for DS who had come straight from school and was starving and nervous ? he likes to munch when nervous. They were not happy with this so we waited while DS ate some crisps in the waiting room. The psychologist then tells me to leave the crisps in the waiting room. I say I?ll put them in my bag. She grabs them and says ?leave them on the chair, they?ll cause a problem?. I snatched them back and said? they won?t?. She says ?they will?. I say ?I know my own child, they?ll be fine, he?s 7 not stupid?

Great start!!

Test goes quite well in that they managed to engage him and got a good picture of him.

He was at a loss with the ?what makes a friend? questions ? they play with you. As for the marriage question, forget it.

He couldn?t explain feelings. He knew what made him mad/sad etc but not how it made him feel. He had no idea of anything he could do to irritate someone else.

He said he never felt lonely and couldn?t see how anyone could be??

He stumbled on the make-belief brush teeth ? ?I haven?t got a tooth brush? and it had to be explained that he had to pretend. He did it half-heartedly.

He managed to do stories with toys and random objects but there was quite a lot of copying of the psychologists stories.

When given a task to play by himself, he drew. A spinning top was placed by him and spun by the psychologist. He just tutted and knocked it away and continued with his drawing.

He got up and lolled around a bit but mainly stayed focused

He explained what happens after school ? describing a routine.

He was able to explain a story from the pictures but was a bit rubbish on describing the faces

He kept looking to me for approval but I wasn ?t supposed to say anything so I smiled lots and gave thumbs up!

All in all, a pretty accurate reflection of the complex chap he is.

I asked if they would let us have the results. No. I asked why? They were pretty patronising trying to explain that it is a multi-disciplinary process and parents get too worked up about the results (although the head of service told me that it all rested on the results in DS?s case). I get the feeling they don?t score them and just make a decision when they all sit in the panel watching the dvd!!

I did get an apology about the crisps though which strangely didn?t disrupt the process!!

Why you have to be spoken to as if you?re dysfunctional or stupid I don?t know!!

"whether anyone says so or not, quite a lot of subjectivity to it "
halle-flipping -lujah. I want Mrs Bean as my SALT (not that I have a SALT).

snort and ROFL about "mummy" and biting.

Professionals avoid using any name to me....

Mrs Bean that is really helpful and my point would be.....why can't the rest of them communicate like you? If this is the case, why not say this?

I had my suspicions that the panel was going to be a case of them sitting down and watching the dvd, although this is actually not the way the ADOS is supposed to be implemented.

This apparently 'gold standard' procedure is actually supposed to be scored within 15 minutes of the test according to the research I've read. That is why the clinical expertise and experience of those delivering the test is so crucial - no offence intended.

This is clearly what they do in some areas where they are given immediate response or parents are sent for a coffee while they score.

Otherwise it becomes, not less of an ADOS, and more of a group training exercise.

ADOS/ADI are supposed to aid clinical judgment not replace it and that is my frustration with the process.

That is so nice Mrs Mag and quite restores your faith in the belief that there must be some decent professionals out there capable of good communication.

They were quite good in the test as DS is very discerning about who he plays with and I was worried that he would 'shut down' and not show himself. I don't want to hide his lovely personality, I just want help for his problems.

It is a frustration isn't it when people don't see your child for the wonderful human being s/he is? DS can appear very withdrawn and uncommunicative if not engaged but I would not want people to think that was the real him even if it might make the dx process seem easier.

The fact is he has obvious problems but he is also funny and kind and loving and full of interesting facts about star wars! I want everyone to see what I see

"This apparently 'gold standard' procedure is actually supposed to be scored within 15 minutes of the test according to the research I've read. That is why the clinical expertise and experience of those delivering the test is so crucial - no offence intended. "

Still though..it remains subjective.
Tom Muskett (I think that's his name) at the University of Sheffield has done a Phd problematising the 'diagnosis' of autism spectrum disorders on the basis that the behaviours that we examine in multidisciplinary assessment are, well, behaviours.. and certainly subject to the interaction e.g. responses may vary wildly depending on whether or not your child 'clicks' with the tester etc etc, the way questions are phrased or materials are presented (bearing in mind this is not controlled for on most sections)

When the DVD is scored, it really isn't like clinical training, believe me. Usually it's scored as you go along as well.. but there tend to be disagreements on the subtleties between the different professionals. My interpretation of fluid integration of gaze, gesture, vocalisation tends to differ from that of a Paed and so on.... I don't care what anyone says, the wording of the ADOS is far from standard which makes it more difficult. It's wholly different from, say, a psychometric test such as the WISC or CELF, which is based on objective data. I wish I could remember an example now but am on mat leave at present.. but a huge amount of it is down to individual interpretation. Perhaps the 'gold standard' in terms of research is to respond to the data in 15 minutes but to be honest, I don't see the advantage in that for any team, regardless of experience. I would tend to think that would tend to make diagnoses more rather than less subjective e.g. a 'snap' decision: not necessarily such a good thing, you know.

From my point of view, it's like anything.. you need some amount of converging evidence.
The pathway for the over 5's in my trust (and it is far from perfect, but absolutely the best possible with current available funds) is a full SLT assessment (typically 2-3 sessions), a full Clin Psych assessment (including psychometrics) (the same), the ADOS, a school observation and an MDT meeting. It is an incredibly laborious procedure of which the ADOS is one part: we work in an inner-city deprived multicultural, multilingual area and there is much to consider beyond the raw data.

The reason that processes tend to be so lengthy and drawn out is because it is a very weighty decision to make and, as most people who know anything about autism know, this is a condition that is incredibly variable and individual in its presentation. I personally think a 15 minute 'reaction' to an assessment that yields as much data as the ADOS is, well, arrogant. You are putting the subtleties of another (potentially non-NT) human being's communication, thinking style etc under the microscope in such a massive way: the outcome may have tremendous repurcussions for that individual for the rest of their lives.. and casually assuming that you are so expert that you can make that decision in 15 minutes smacks of professional egotism to me. But that's just me.

On a more technical level, there are, for example, several areas of the ADOS, particularly say, Module 3 for the more verbal child, where alternative diagnoses, for example specific language impairment or EBD of one type or another, might better describe a child's difficulties but the behaviours will 'come out' as ASC on assessment. A classic example is a child with high level SLI who performs very well and demonstrates great rapport/social referencing etc on non-linguistic tasks but goes to pieces when language is involved.

When I've done assessments with people I am happy to say all this to them.. and I do work in the public sector, in case anyone's wondering! I talk to them about my perspective/my thinking on their child's behaviours as I see them in a 'snapshot' situation, trying to marry this with what I can yield from the standardised and non-standardised assessments we've undertaken.. it's a dialogue, and where I can, I involve the (older) children too.. but despite having done hundreds, if not thousands, of these assessments it is not something I undertake lightly or feel that I will ever have enough experience of to just casually toss out a diagnosis without due care and consideration..

Mrsbean thank you for your thoughtful and helpful post. I really wish you were in our local CAMHS dealing with this because you sound like you deal with these matters with great care and thought.

My frustration is that we have had a rudimentary one-off SALT assessment, an experience with the consultant clinical psych who heads the team which drove me to tears of desperation.

She saw us once and said 'it's very clear, I can see exactly where we're going'. But she is a uniquely strange woman and a dreadful communicator who had no ability to engage with a child. I had to write and say, er, not so clear. DS has many 'atypical' traits.

She then, after months of us asking, went in to school with a view to offering therapeutic support as DS was having trouble with anxiety (she had to be dragged kicking and screaming to do that). Instead, she produced an observation report which said (I paraphrase) 'school are wonderful and I think it's all sensory - ask the OT about heavy boots' I kid you not. A stupid teacher had played the 'all's wonderful here' card but this woman hadn't looked at the support DS was getting to keep him functioning in school or the fact that the ASD outreach team had been asked in.

When the ASD outreach team in, they produced a report (after spending the day at school and talking to everyone involved with DS) which detailed lots of problem areas and spelt out the substantial support he required.

None of this would have made it anywhere near panel - they would have the psych's report saying 'all looked fine to me'

So, as you can see, when they say 'you can't have the results we need to discuss at panel' I think mmmmm, do they know what they are doing.

DS's SALT report is 8 months old (and based on one meeting), he has no paed report (paed's see to confirm referral to CAMHS and that's it) and no other evidence.

So it's not looking so thorough from this neck of the woods!!!

It's very frustrating how much the process differs from area to area. The Manager of the ASD Outreach team in our area is ADOS trained and on our panel.. don't know why one arm isn't talking to the other in your case, how infuriating!

Can you ask for a paper copy outlining their MDT pathway and challenge this based on guidance/good practice guidelines?

Our CAMHS team have just been 'taken over' by another MHT who have apologised for the delay we've had to undergo. They escalated DS's case and we got dates within a few weeks of them taking over.

However, when I emailed the service director and set out all the problems we'd encountered and my concerns with the dx process and panel and asked for information about the practice standards the new Trust expects in this area, I got pushed back to the local service manager to 'chat on the phone'.

He is not a clinician. His response was to talk to the psychiatrist at our CAMHS who said 'don't worry about the reports as it all rests on the ADOS/ADI'.

I said I thought this was a problem as the tests were not supposed to replace clinical judgment and that the reality was that the panel would have little value in my son's case as no one knew him.

He couldn't really talk about the panel's functioning because he doesn't sit on it and reassured me that it would be 'very thorough'. He told me to 'give it a shot'.

Then we do the ADOS with a deeply patronising woman who was quite good at engaging DS but who tells me they can't talk about the ADOS results as it's all about the panel.

So we go round in circles. I have emailed today about the ADOS and the failure to involve parents but I am worried that I am, for the sake of a speedy outcome, after waiting 18 months, letting my son undergo a process I have little faith in. I reckon we can got for a second opinion in any event

But is this the right approach? Is this how a panel should function? Should I push for them to set out their pathway and best practice guidelines?

I think as you are feeling pretty underwhelmed by the whole process that you should make a written complaint to someone - the type that gets sent in the post vs via cyberspace.

It's hard to tell what's going on here re: the panel, it could be thorough or it might not be.

It sounds to me that what is most pressing right now and what you are really suffering from is a lack of dialogue with the professionals involved and limited communication about what you can expect from this process after a lengthy wait. Diagnostic assessments are stressful for families at the best of time, but given these circumstances, it sounds like you are saying you feel out of control and unsure at the moment - specifically due to previous delays and inconsistent communication about the process. I would focus a written complaint on this and yes, I would probably request written info on their pathway/procedure.

You might find that individual clinicians are very positive about this. We have always encouraged complaints about the length of our process (staffing levels have been hard to maintain which has sometimes caused major gaps).

When will you know the outcome of the assessment?

Thank you Mrs Bean.

We wrote and asked that the current head of service not deal with our son after she had offered us no help.The new MHT service director immediately got in touch with dates for possible ADI/ADOS and panel. She asked that the previous psychologist be allowed to give input. I have been asked whether she can chair the panel. If I object, she still sits on it.

I have said that it is very difficult for me to make judgments like this because I don't know what form the panel takes and in actual fact we would have hoped for an assessment away from our local area so that we did not have to deal with any of these people again!!

I have forwarded the ASD outreach team report.

I was going to write and ask for:
(i) a copy of their MDT pathway and any best practice guidelines
(ii) details of all professionals who will sit on the proposed MDT
(iii) details of the correspondence/reports the panel will have before it

Do you think this is fair or will I look like a mad woman??

We have ADI next Wed with panel in mid June and decision and report at end of June.

I think that is what it comes down to Star. The process has been so poor and no matter how they try and reassure us now, it can really be remedied and the new management kind of acknowledge that.

But we are now a month a way from a report and conclusion. I suppose I have been laying the grounds for a referral elsewhere afterwards by raising my concerns at this stage. I understand that you have a right to request a second opinion but not a right to get one - is that right Mrs Bean?

It's a question in the meantime of how much I work myself up writing letters about their crap process??They know that I know it is crap which is why we have been escalated. I thought I might write formally and just set out our concerns with the process to date for the benefit of the new management who are making efforts to remedy it.Or am I working myself up into a lather?

What do you think? DH is sooooo useless at being a touchstone on these things as he would never complain about anything really and I complain way too much!

starlight sorry to butt in but what was your involvement and what didyou dotoinfluence dx? Going along similar process but not as far on as DEbs.Really, really struggling to just keep goimg at the moment.

Cornsilk, what stage have you reached and how is it going?

"The long shot is that you end up practically diagnosising your child yourself through your 'leadership' of the whole sorry affair, which is very unsatisfactory because what you want is an independent and objective 'expert' assessment."

I think you are right Star and I think, to a certain extent, this is what we have to deal with in terms of assessment and dx because the spectrum is actually such subjective, nebulous concept.

I mean what on earth is the real difference between PDD-NOS (pervasive developmental disorder - not otherwise specified) which falls short of autism and autism? Supposedly they have the same neurological cause and it is a matter fo degree in the exhibition of symptoms on the triad. But are those symptoms a reflection of 'innate' capacity or learnt? For example, ASD children, like other children, can be taught social skills etc. What they have learnt and how they have learnt to use if can mask core deficits

Equally, a child who has not learnt such skills may seem more significantly affected.

It's poppycock really and Star you are not being unfair by saying that.

But trying to change a dx system or make practitioners more aware of the breadth/complexity of difficulies/symptoms seems very hard! Better training and expert involvement is required

In my experience the more articulate and knowledgeable a parent is the more likely the child will get a dx.
My two's dx took the form of six weeks observations at cdc and a griffiths test and SALT tests and then meetings with child psych to discuss development and provide background etc.
At the time my child was being observed the parents had group meetings with various professionals who would make up the diagnostic team.
It was very obvious early on that parents less able to articulate their child's difficulties were not considered a reliable source of information.
It was also difficult for parents who had had little experience of "typical development" to point out what the professionals were looking for(we had topics each week)
For that reason alone I know a few families who went through assessment before school age whose children were considered not on the spectrum who were later diagnosed as being significantly affected once their child had reports and observations from teachers and other professionals.
It's not that these children weren't on the spectrum at the first assessment it was that parents were unable to provide enough examples to support a dx.

Not while professionals still think their processes are somehow scientific and 'objective' rather than entirely subjective and probably deeply flawed because of then limited personal experience of ASD children that most diagnosticians have. Seeing a child in clinical conditions is not the same to raising a child with ASD, no matter how many such children you see.

It is interesting that those people working day in/day out, problem solving with ASD children in different settings like the trainers on our Early Bird Plus course were far more nuanced and flexible in their thinking. They demonstrated far less reductive or presecriptive thinking about children on the spectrum and were much more open about being guided by the parents knowledge and experience.

I woudl actually feel very happy if either of those wonderful women were able to d. One was a rather wrinkly, babbly but lovely Ed Psych who knew loads about ASD and had met and worked HANDS-ON with lots of children on the spectrum. She made no assumptions and really cared. Indeed, she would often pull little things from her bag that she had bought for a particular child she was working with - newspaper supplements, laptop plug in lava lamps - she was always thinking of ways of SOLVING problems.

Now, why can't people like that dx, rather than these rather snotty CAMHS types who seem to work on the assumption that we need to be patronised as we don't know how to parent. May be they are too used to dealing with 'dysfunction' in other settings and are approaching this from the wrong angle??