Feeling shell shocked after 1st paediatric appt

[singlevillagemum]

i have posted a few times on the board but always feeling a bit of a fake as everything was 'suspected' or possible. I'd read threads about paediatric appts and thought I was ready and prepared.

Now I'm sitting here in shock because all of a sudden it's so real. First shock was that she told DS (6) that he has aspergers to his face but that he would need to do an ados test soon for his 'papers'.

Salt referral, camhs referral, specialist teacher referral, family something advisor, all just reeled off so calmly.

DS was an angel throughout but I have been bombarded with questions about 'what is aspergers?' since leaving.

Just feeling a bit fragile and overwhelmed now.

Just to say thanks for the different perspectives. Although what some have posted is quite blunt, I do agree that it is my problem, DS is (after initial questioning) not that bothered and has decided that it is similar to languages (x talks Spanish, y talks Turkish, my brain talks aspergers) which I think for now should suffice.

Once it is in writing then I guess we'll discuss it more along the way. As it's just me & him perhaps it just hit a little harder than I'd expected. I think I was just feeling a bit sorry for myself and as others have pointed out there are a lot worse things a dr could be saying.

Wow! You're spot on SingleVM. Great insight.

SingleVillageMum - you can and will have a whole set of emotions. Of course you will. But if your DS can see it as 'the way I'm made' then he won't see it as something to live with, it'll just be 'him'.

Sometimes I think a paed with poor bedside manner is the best person to tell a child of a dx. My ds (AS) is very blunt and literal, as are many Aspergers. He likes to call a spade, a spade.
One doctor told ds that he was special, wierd. And then told him that he too was wierd because he knew all about Ph balance of ... hydrogen chloride magnesium sulphate ..... Ds told him he knew all the scores from last seasons premiership, to which paed told him that ds's was probably more useful than his speciality !!

Going from my own experience of the diagnostic process, I too would be angry with a paediatrician announcing that a child has AS without going through the assessments first.

My ds was first assessed at age five. The paediatrician at the time told me she was certain he had AS and that the range of tests were to confirm where he sat on the spectrum, not if. We were told to treat him as though autistic and direct the school to do the same.

However, some of the tests came back 'borderline' and he didn't get the diagnosis. Despite the paed remaining convinced, it wasn't her decision to make alone and there were disagreements from her team members when his case was discussed. We had to wait almost three years for a second opinion referral and assessment before his condition was confirmed.

This was a horrible time in limbo - we couldn't talk directly to ds about AS and he got no support in school without a confirmed diagnosis. I was even hauled over the coals by his head teacher for lying about a diagnosis that he didn't have, after I'd told them what the paed had said at that initial meeting.

I absolutely agree that too much time-wasting goes on in the diagnositic process and that if it's a clear-cut case where the dx can be made instantly then it should be. But it doesn't often happen that way and the tests are there for a reason. As is often said on this board, no one individual can make the diagnosis and the full range of assessments has to be pulled together to form the bigger picture. In my opinion, the OP's paed was wrong to state the dx outright before the assment process was completed.

Sorry Streaky - you're wrong to say that 'no one individual can make the diagnosis'.

Of course they can - but are prevented from doing so by the hoops their PCT sets for them.

DS received the same dx quite separtely from 3 diagnosticians who had thec courage of their professional competence and didn't need to have their opinion approved/rejected by a panel of twats - most of whom have very stereotypical ideas on what must / not be present to fulfill the diagnostic criteria.

Makes me very cross.

Ds never got a dx from a panel. It was an individual. He was seen by one person, only, then tested, and dx'ed, by that same said person.

Wow, that's very interesting! It doesn't really surprise me though to find that there's yet another layer of shit to How Things Are Done in my area.

A question though: I've always thought (having been told as much) that all the test scores come together and act as evidence for the dx. Is that not the case? WetAugust, you mentioned earlier that a good paed would have limited faith in ADOS but wouldn't those results have to be considered? Are you saying that some of the assessments aren't necessary and a capable and experienced professional can make the call without them? Or could that one professional carry out the tests themselves? Oblomov, is that what happened with your ds?

Which individuals CAN make the diagnosis without input from other professionals?

Baffled now. My understanding of the diagnosis pathway has just been wiped out . I've never come across anyone whose child has been dx'd by any other means than a full panel decision.

We had an Ed Psych who didn't want to dx my DS3 at 2y1/2 with ASD. The Paed did and the Salt. I argued the toss with the EP and the other two overturned her decision. He is very Autistic. It was so fecking obvious, I was the one who raised it with the Paed when he was 10mos old! The EP was a caring sharing organic birkenstock waste of space and is no longer with my LA. Thank god!

My DS was DXed by a paed at a 'communication and interaction' clinic along with a SALT. There was no-one else. He was DXed over six months from the first appointment which was an hour long interview with me to note all my concerns and answer her questions. She didn't appear to be using a set questionnaire, but she was making copious notes. She then observed him twice at his special pre school where the SALT worked.

I think sometimes the drs can forget that you are a person with feelings and so is your dc.

I completely wrong footed dds epilepsy consultant (after a very badly handled series of seizure, being accused of making it up and having the dx withheld from me presumably because dr didn't want to back down knowing I was moving and he wouldn't have to see me again, I got the dx from opening a sealed letter to the next dr) he swept in said a load of things I didn't understand and swept out again leaving us with a junior, normally I'd have put up with it and quietly seethed but I was 4 months pregnant and hormonal so I excused myself and went outside to calm myself, as he walked past and demanded to know why I was crying.

So I told him, he was appalled that we knew nothing about the dx and had been offered no advice and arranged for us to see the specialist nurse who was amazing but he also admitted it hadn't really occurred to him that it was anything other than just another appointment to us. Now I'm so used to her conditions and well informed and I would generally take an appointment like that in my stride but when you are starting out its hard to pull the info you need out of a business as usual dr.

Don't be afraid to write notes, stop and query things and take in a list of questions with you, it takes some confidence (or bluster) but is well worth doing

Are you saying that some of the assessments aren't necessary and a capable and experienced professional can make the call without them?

Yes, that's exactly what I'm saying.

Quite frankly, anyone with half a brain could see if a child was not functioning in a NT way. sigh.. Bloody professionals!

agree with Wet. I strongly believe that a v experienced dev paed, or in some cases clin psych can make the diagnosis, and wonder if salt and ep type would be better used in hands on therapy than in the assessment progress. We had a multidisciplinary that didn't diagnose DS as being on the spectrum, and it was fairly scanty tbh, it only took an hour and a half including the professionals going off for a private huddle!

DD1 (6.3) has had the same consultant for 3½ years now. She still doesn't have any firm diagnosis. She instead has a list of 'features' such as epilepsy, learning difficulties, MRI abnormalities, Gross and fine motor difficulties, SALT delay/disorder, blah blah, blah blah. She is certainly in the right place educationally, but not with a dx.

Someone else I know took their DD to their first appointment with the same Consultant, and within about 30 minutes of their outlined 'concerns' to the Paed, he said 'It's very clear x has Aspergers.'

I think if it's clear then a dx can be forthcoming very quickly.

my ds was diagnosed (ASD) by one person (NHS paed) in one two hour appointment with no formal testing. There are no assessment panels here though the paed may refer for a SALT or OT opinion. CAMHS are not involved in the assessment process (thank god - it is usually them who fuck things up).

OP I know is is shocking, I was a mess after ds was diagnosed; but now, 3 years later, I am incredibly grateful that we weren't dragged through a nightmarish assessment process.

architeuthis I'm sure in time I will feel the same. A friend in RL asked yesterday "What kind of plaster person are you?", after replying 'huh?' I realised I do pull it off in one quick tug rather than gradually easing it off. "Well there you go then" was her insightful reply.

Thanks again for everyones thoughts, although still a bit wobbly at times I am much much calmer and DS has lost all interest as he's just heard he starting Beavers after Easter which is clearly much more interesting to him ["they have a Science Investigator badge" - repeated every 15 minutes] and hasn't mentioned AS since.

WetAugust thanks for enlightening me. Just when I think that nothing more can shock me this comes along to bite me on the bum. I had no idea that diagnosis could be so simple and that it's individual regional practice that makes it so complicated. I can think of a few people who don't know this but who would be interested. Thanks.

I think the shock was so great because I'd read many posts here where people had been told to wait & see or put on an interminable waiting list for CAMHS or whoever. It didn't cross my mind that I'd walk out with a diagnosis.

I also worried that because the diagnosis was so quick that it must mean ds was very severely affected - as it turns out ds' ASD is very mild, he has few difficulties arising from it (I think dyspraxia + language disorder may be a more accurate diagnosis now but ASD is fine) although he's certainly neurologically unique! :)

Personally, I think the whole AS/ASD diagnosis process has become a bit of an 'industry' for various 'professionals' who should have no part in the actual dx but who should be called upon to provide theraputic input after the dx.

If DS hadn't helpfully lent 'Apergers Syndrome - A Guide for Parents and Professionals' by Tony Attwood to a femal Aspie he was keen on I would be able to quote what this internationally renowned expert on Aspergers says in that book - which is basically a competenet psychiatrist/clinical pyschologist can make an accurate diagnosis in an afternoon.

It's all about money.

When parents receive a dx they expect some support to be provided alongside the dx. That doesn't happen.

"who should have no part in the actual dx but who should be called upon to provide theraputic input after the dx."

I could not agree more.

Keeps them all busy without the need to actually DO anything.

absolutely agree Wet. The EP ran for the hills as soon as the mda was over!