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Paediatrician ready to dx ASD after just 1 appointment, is this normal?

(22 Posts)
catuxa Fri 29-Mar-13 00:13:56

Hi everyone, sorry for long post.
This is my second thread in the forum, to give you all a bit of background I'll paste my post from October 2012
My DS is 5.9 (6.3 now) and has speech and languages problems. He didn't start talking until very late (3y.o.) and has been having speech therapy for the last 2.5 years and he's been progressing. We took him for the ICAN assessment Dec '11 and although they didn't come up with a dx they said he clearly has SN and needs support from school, local authority etc. What they did say is that he's extremely clever but his poor language skills make him score really badly on any test where language is involved. School seemed to downplay it all at first but they put him on an IEP but by the end of last school year we (school, us and SALT) were all worried about his lack of academic progress and social interaction. His SALT is being very supportive and referred him to community pediatrician. We've just been back from the appointment and she's been talking about AS and/or dyspraxia as possible dxs. I can see the dyspraxia but I have always ruled AS out as his language skills are poor and he has no obsessive interests (apart from always wanting to watch TV or play computer/ps3/iPad). He's socially awkward and has a tendency of behaving like a baby (baby noises, shouting and screeching, licking and sucking things) and other AS criteria but not the obsessive interests. We have a history of AS in the family.

Now, 6 months later. Went to see paediatrician again (2nd visit) at the CDC a couple of weeks ago and we were shocked to hear that she was going to give him a dx of ASD straight away. That's just after talking to us for about 45 minutes and actually examining him for only 15 minutes back in October. Along with that she had ours and the schools Tony Atwood AS screening questionnaires ( we were devastated when we saw that the school scored him the maximum in all but 3 questions), my notes with his "odd behaviours", a couple of school reports and the latest Salt report.
I asked for an assessment but paed replied that they only do them in borderline cases and not in clear cut cases like his!!! however we insisted and she agreed to do it. This will be done in May.

Is it normal to be given this sort of dx when she's only actually seen him for 15 minutes? Was I right to ask for "confirmation"? I'm very confused at the moment.

ApplePippa Fri 29-Mar-13 08:00:26

Hi Catuxa, I don't know what's "normal", but my DS was diagnosed with ASD at his first appointment with the paed. In his case, the paed was very experienced and had worked extensively with children on the spectrum. She said she had seen enough confidently diagnose in just the one meeting.

I have to say, I was surprised too. Not surprised that DS was autistic, but surprised he was diagnosed so easily. We were offered further assessment to confirm if we wanted, but declined as there was a waiting list of months.

ApplePippa Fri 29-Mar-13 08:00:30

Hi Catuxa, I don't know what's "normal", but my DS was diagnosed with ASD at his first appointment with the paed. In his case, the paed was very experienced and had worked extensively with children on the spectrum. She said she had seen enough confidently diagnose in just the one meeting.

I have to say, I was surprised too. Not surprised that DS was autistic, but surprised he was diagnosed so easily. We were offered further assessment to confirm if we wanted, but declined as there was a waiting list of months.

lougle Fri 29-Mar-13 08:05:17

I know a couple of children who have been diagnosed on the spot.

sorry it's been such a shock.

dietstartstmoz Fri 29-Mar-13 08:18:51

It was normal for us, we had initial appointment with the paed. Went back 6 months later by which point SALT had been assessing DS and working with him. They had submitted a report to the paed. She read through that, spoke to us again and spoke to DS and then said 'yes, he is on the spectrum'. We asked a few questions, including should she do ADOS etc, she said 'no, not necessary' and we were in there about 20 mins. We came out completely shellshocked, although we were expecting it. I'm sorry you have had such a shock, it is very hard to hear. Although now, I am grateful it was such an easy process and we didn't have to fight to get a dx. I dont think I would have had the emotional resilience for this as my world fell apart for a while. The paed was of course completely right. You also need a dx to access some services. At least you dont have to wait long for the assessment, and maybe that will help you.

catuxa Fri 29-Mar-13 08:26:43

applepippa thank you very much for your post. I have to say I was shocked she could diagnose it so easily when up to August last year everyone we had seen had ruled out ASD. Admittedly those professionals were not paeds just SALTS and the psychologist from ICAN centre.

mrslaughan Fri 29-Mar-13 08:33:13

I personally would be very concerned by this whether is is "normal" or not, there are learning difficulties that can "look" like ASD, such as dyspraxia, but have a different cause.
No matter how experienced you can't delve into those in such short appointments.
Plus I think for dyspraxia a highly trained OT would assess for this.

catuxa Fri 29-Mar-13 08:42:42

Dietstartstmoz thanks for your post, very similar experience to us then. I don't know how to describe how I feel now, mixed emotions really . it has taken us 3 years to finally get a dx and it was the one we were not expecting as we were told several times they didn't think he was on the spectrum. I just wanted the paed to be 100%sure, I'm probably in denial.

catuxa Fri 29-Mar-13 08:45:30

mrslaughan ds scored through the roof on the ABC checklist and to be truthful dyspraxia plus SLI is what we were expecting

Crawling Fri 29-Mar-13 09:14:09

DD was diagnosed autistic by CAHMS but it was in one meeting.

dietstartstmoz Fri 29-Mar-13 10:56:41

catuxa- we were fully expecting it, but we were still hoping they would say no. It was still a huge blow, we both walked out in tears. My husband went to work in the afternoon, broke down and had to come home. For us both, emotionally, it was like being hit by a truck. It affected us both, I cried every day for about 6 months and neither of us were able to tell anyone for ages. It took me months to be able to say the words, "DS has been diagnosed with Autism", I physically could not do it. We are now 2 yrs down the line and it is easier but still hard some days. I think for DS it could not be doubted it was ASD, but you are right to push for the official assessment. Just take time for yourself and remember he is still your little boy. Its OK to be in denial, we hoped it wouldnt be, even though it was blindingly obvious.

My D2S was seen by the paed when he was just 3 together with his SALT, she was almost certain it was ASD immediately. She waited 6 months and observed him twice more his setting for a few minutes, had reports from the setting and the SALT. He was a clear cut case. He never needed ADOS. If he had been older she wouldn't have waited the 6 months. Push for formal assessment if you are are unsure, of course, but be aware that if it's clear cut the DX is unlikely to change. sad

Also, just because it may be obvious to the paed, it doesn't necessarily mean he is severely affected. My DS2 does well in MS with 1:1 support and is HF.

dietstartstmoz Fri 29-Mar-13 11:48:30

like ellenjane's DS, our DS is now aged 5.5, in mainstream, dx of HFA and has full time 1-2-1 support and is doing very well. He has his challenges, but a Dr suspecting ASD immediately does not mean your DS will not do well in the future.

mrslaughan Fri 29-Mar-13 13:50:03

You could get a second opinion?

I would be the first to acknowledge that in some situations, DS could seem ASD...situations where he was extremely stressed and he would just shut down.
Since being diagnosed with Dyspraxia and sensory issues, finding a school environment that has supported him,and working with OT on sensory issues he has blossomed....and I would say 99% of the ASD like behaviour has disappeared.

At the end of the day though, it is about treatment, and having that directeed in the right direction, if you are going to get that (where I live apparently impossible to get funding for dyspraxia) because they have a label that attracts funding....well maybe that is positive....

The whole system is completely screwed though

thesecretmusicteacher Fri 29-Mar-13 14:06:20

The public associate certain diagnoses with certain unwanted behaviours - like obsessions. So as parents we can shy away from a diagnosis if it is associated with a behaviour that our child doesn't display. All she is really saying to you with this diagnosis is "communication difficulties arising from the way he is "wired" that haven't gone away as he develops". But I know that for me it felt as though an ASD dx was suggesting DS2 had problems he doesn't have, and ignoring strengths he does have and I think that's one of the problems we have with our system.

does any of that make sense or am I just talking about myself (probably the latter)?

WilsonFrickett Fri 29-Mar-13 16:22:13

One of the things is that the diagnostic criteria are changing and that Asperger's (which I am assuming is what you mean by AS?) isn't going to be dx'd as a 'separate' thing at all. So someone can have ASD and their particular things can be AS, but they'll still have an ASD dx.

Does that make sense? - AS is now 'on the spectrum' as a dx, rather than there being 'the spectrum' 'then AS'. So he may well have AS, but it's now just dxd as ASD.

Do remember as well that a lot of HCPs are often conservative when saying what things 'could' be. I suppose that's fair enough as they can't dx themselves, so they don't want to be getting into saying things like 'I think this is X'.

Anyway, sorry you've had a shock, it must have felt like a bolt from the blue. Take some time to process it. Of course, the dx is really only a step in the journey, the real question is 'what's next' and as long as you get the right support for DS it doesn't really matter what the label is. (((hugs)))

catuxa Fri 29-Mar-13 18:28:07

Thank you all for your posts, they are just what I needed right now. I need to get my act together and realise that a dx of ASD is not going to change who DS really is. It's just about getting the right support for him.
thesecretmusicteacher I think you are absolutely right, my negative perception of ASD is probably clouding my own judgement. It's the unknown, isn't it?

thesecretmusicteacher Fri 29-Mar-13 21:03:00

Xx

catuxa Mon 13-May-13 13:18:03

a follow-up, just in case other parents found this thread useful.
Ds had ADOS test recently and the ASD dx is confirmed. Very clever kid but obviously struggling with social communication and social imagination. They said that with the right support he could do very well at school.
As he really struggles academically his school wants to pursue statutory assessment before he goes into Y2.
Dh and I are feeling positive about it though.

BeeMom Mon 13-May-13 13:38:44

I am glad to hear that the whole experience has turned out to be a positive one, catuxa, and that you are finding such positive support from your DS's school.

I can't say I blame you about being shell shocked - with all of the stories on this board about the diagnosis taking months to years for some DCs, when it happens swiftly, it seems reasonable to challenge it (if only on an emotional level - it seems that intellectually you agreed from the outset).

With Bee, it was the opposite, she scored within the parameters for dx on the ADOS, but nearly every professional who has worked with her from that point forward disagrees with it (her ADOS was done when she was 2y5mo). Talking with the neuropsychologist working with her now, he feels her autistic tendencies are more related to anxiety than "truly" autism. I don't know - for us, as long as she is adequately supported, giving it a fancy name is not so important, but it has become quite the point of debate among those who work with her... hmm

dietstartstmoz Mon 13-May-13 19:10:20

A mixed blessing then catuxa-good news that you got a dx without a huge battle but I'm sure it is hard to hear. It was for us. Great news about the school and statement-fingers crossed that goes smoothly.

DisAstrophe Mon 13-May-13 19:44:01

Good news that the school is on-side. Be kind to yourselves - it is a massive label. Takes time to remember that your ds is still your lovely little boy and that nothing has actually changed.

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