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ASD DX - a word to the wise.

(22 Posts)
siblingrivalry Thu 30-Jul-09 13:23:57

I thought that I would share our recent experience with you all, in case it is helpful to others going through the dx process for ASD.

I will do my best to keep it concise -it turned out to be an epic in reality!

Basically, dd1 (8) has shown signs of ASD from birth. In reception, the wheels really started to come off and she was anxious/obsessive etc. However because she is very bright academically and had really good verbal skills, school dismissed our concerns.

Fast forward 2 years and she was falling apart, so school referred us to CAMHS.
A multi-disc team assessed her and came up with : social and communication difficulties, OCD, obsessions, high levels of anxiety, SPD, Dyspraxia and dyscalculia.

However, because she used her learned social responses (eg she has mastered a fixed smile and a handful of rote responses to general enquiries)and because she could interact with the psyc during the ADOS, they said that she wasn't on the spectrum.
This is despite her ticking all of the other boxes, lacking empathy, hand flapping and being in her own world hmm
But we knew that there was more to it-it had been going on since birth.

At that time, we had cause to instigate a complaint against CAMHS for another issue, so we sought a second opinion about dd. We saw a consultant paed who immediately gave a dx of AS/HFA and said he had no doubts at all-it was very obvious.

Back to CAMHS to discuss the issue we complained about (they grovelled and back-peddled so we just decided to let it go) and the psyc was taken-aback about the AS dx and said he had ruled it out and considered dd to be 'very sensitive and anxious'

So he went back to the beginning and asked for a dev history, list of behaviours etc and he was shocked at what we told him. He said that he was unaware of most of it, as he only became part of the assessment team after the initial history and observations were done. He said no one had made him aware of the red flags. This ties in with our complaint -which is a loooong story.

He now agrees that dd fits into the category of HFA/AS and has admitted he missed the signs. Of course, we could argue that it was his job to make sure he was up to speed. However, all that matters to us now is that dd's AS is recognised across the board.

I posted to make others aware that it's vital that you question 'experts' and trust your own instincts and judgement.
Mistakes are made, no question, and I think it is very easy for them to rule out ASD on the basis that the child does not tick EVERY box. I think this is especially true for girls, who often have better social skills than boys and are therefore seen to not fit the profile.

bubblagirl Thu 30-Jul-09 13:48:04

well done for all your hard work sibling unfortunately we do sometimes have to fight and fight before we get what we know is right and im glad finally you got what you knew all along and now can have all the help needed

Marne Thu 30-Jul-09 14:04:41

I'm glad you finally got the answers you needed.

Dd1 was diognosed last november with AS and Dd2 got her dx yesterday of ASD. I have to say we managed to get a dx for both very fast, dd1 got her dx when she was 4.6 and dd2 is 3.4.

Like your dd dd1 is very bright (a year ahead at school) and has friends at school, she has some OCD traits and does get anxious. Dd1 shows no signs of having AS whilst at school and has no help but i am glad we got the dx so early so we can help her in the future if we need it.

Dd2's dx was easier as she shows a lot more ASD traits than dd1.

I have noticed a lot of changes with both the dd's since starting the dx process and i also think that AS/ASD in girls is a lot different than AS/ASD in boys, i think it must be harder to diognose girls in the spectrum as they are very good at hiding their traits and adjusting to different situations.

I think there is still a lot to learn about ASD in girls.

I agree that you have to go with your gut instinct. I knew dd1 was on the spectrum from 18 months, most of my family still question this (they think dd1 does not have AS).

HelensMelons Thu 30-Jul-09 14:21:33

Well done siblings - it sounds very positive that you finally got the dx you knew 'fitted' your dd. It sounds like it was pretty horrendous getting it, however.

I think it's true what you say, there is less research around on girls and asd and the profile, I'm fairly sure is more geared to boys.

Mistakes are made and I think it's important that as parents we query the experts if something doesnt sit well.

We are having an assessment for adhd next week and I have been given two conflicting expert opinions about DS2 (already dx of asd) whether he has adhd or not. It's a bit confusing but we'll get to the btm of it!

I'm glad things worked out, eventually!

siblingrivalry Thu 30-Jul-09 15:54:58

Thanks, everyone. It has been a hell of a battle, but we got there. It just concerns me that, for every child like my dd, there could be another one who doesn't get the right dx sad

Marne, I'm glad your dd2 got her dx - not 'glad' she has ASD, though iykwim? It's sort of weird, but there is an element of 'thank God' when a dx is made. Most people with NT wouldn't understand. It opens doors, should help be needed.

Helen - we had conflicting dx, too. Just go with your gut instinct. Good luck.

asdx2 Thu 30-Jul-09 16:07:52

I suppose I was lucky in that Lucy got her diagnosis really early at just two in part due to the severity of her condition at the time and also in part down to having an older brother with autism and a mum who knew the process.
I look at her now and realise that had I got to fight for assessment now I think it's highly likely she wouldn't get a diagnosis of autism although quite possibly semantic pragmatic disorder.
Her personality and the early intervention does mean that her difficulties are hard to spot and I most definitely wouldn't have got the statement had I waited until she was nursery age.
The head and teachers at her new school can't believe she has one when they have children with far more difficulties on school action.

mysonben Thu 30-Jul-09 16:38:06

Thanks for sharing. I'm pleased that you got there in the end.

We are in caught in the process at the moment, and about what you said about the very early years, i made a little recap of my ds 's development and the red flags for asd were defenately there, i want to make sure that whoever get to assess ds (if and when we get there) knows that, because our HV missed it at his 2 years check up.

LoveBuckets Thu 30-Jul-09 20:21:11

Siblingrivalry, glad you're getting some action now (not in a rude waywink). Out of interest had they done the ADI-R interview on you and her dad? I would have thought that would show up red flags as it asks from complete history.

siblingrivalry Thu 30-Jul-09 20:35:55

Yeah, they did the ADI-R interview -it was done by a nurse, who was adamant from the outset that dd was just anxious and that we were negative, over-protective parents. The complaint we made about CAMHS related to an horrific report she recently wrote.

The contents were shocking (about dh and me) and her boss (consultant psyc) was not impressed at all and made her apologise and requested that all recipients of the report returned it to CAMHS. So she either didn't record the red flags, or she interpreted them as she saw fit.
This is the --power-obsessed-- woman who, despite a comprehensive OT report, continually used inverted commas when talking about dd's SPD. hmm

The psyc said that, as far as he was aware, no red flags had been mentioned. Appalling - how easily things can go unchecked.

BONKERZ Thu 30-Jul-09 20:42:01

sibling rivalry, our story is very similar to yours in that DS started struggling in yr 1 in school, school and ed psych both refused to refer, GP said DS was just a normal boy! referred ourselves to CAHMS via understanding school nurse, CAHMS assessed and said DS had nothing wrong, made a formal complaint...3 weeks later CAHMS send letter saying ODD....again i complain and insist on ADOS and ADI-R...all this time DS has been excluded from 2 schools and was now in a PRU unit....psych still saying DS just ODD as too intelligent to be ASD....ADI-R and ADOS done and clearly show DS has ASD!!!!!
PYSCH shocked at result and apologises after a year of chasing him up for support!

trust your parental instincts!

siblingrivalry Thu 30-Jul-09 20:54:11

Oh, Bonkerz, what a nightmare! Thank God you kept pushing, or who knows where your poor ds would be now.
It makes my so mad that children and families have to go to such lengths to get their dc the help they need.

The plus side of our complaint (8 pages long and very thorough grin)is that Camhs tread very carefully with us and are at great pains to treat us with respect. Just a great shame that we had to get the director and PCT involved first!

LoveBuckets Thu 30-Jul-09 21:14:32

Wow, it's such a postcode lottery isn't it? In our area we have a multisciplinary centre just for preschoolers and the Clin Psych does both the ADOS and ADIR herself and the other staff do weekly play/obs sessions in a group setting. Haven't had to have anything to do with CAHMS, all comes under the health trust.

We need a Mumsnet campaign Godammit!grin I think access to a proper ADOS and ADIR should be available to anyone with autism queries. How is research and budgeting for support supposed to be done if diagnosis isn't reliable/available?angry

Goblinchild Thu 30-Jul-09 21:17:34

'psych still saying DS just ODD as too intelligent to be ASD'

WTF?
Ignorant witchdoctor.
Horrible to have to fight that level of stupidity in a 'professional' so well done for doing it.

BONKERZ Thu 30-Jul-09 21:26:49

the ADOS and ADI-R are not actually offered in leicestershire or Leicester.....when i complained we got referred to the lead clinician who contacted DERBY who are the closest county offering these tests! Luckily for us there was a psych who was doing a year in our county and was studying autism and the difficulties with diagnosing it in children with high intellectual levels! She had struggles to get a case study in our county as the ADOS and ADI-R were not done here and jumped at the chance to study DS! She was fully qualified in conducting the tests and carried them out over 6 weeks last summer!!! She managed to do the report before she left to start a year in Nottingham! The videos of DS doing the ADOS are now being used for training purposes as she said DS was a perfect example of a child who had developed coping strategies to mask his ASD!!!!!!!!

Since DS got his DX he has settled fantastically in an sutism specific school, his behaviour is more manageable, i now have a greater understanding of him and his self esteem is growing.

It did take the Pysch who refused to assess about 8 months before he sent me an appointment to discuss how things were....i loved that meeting! LOL the psych now does what i ask him to! lol

siblingrivalry Thu 30-Jul-09 21:30:16

That's a fab outcome, Bonkerz -it's great to hear how well your ds is doing now.

I also loved the meeting after we had received the AS dx. I gave the psyc the copy of the paed's report and couldn't look at dh in case I laughed. Priceless!

PipinJo Thu 30-Jul-09 21:34:37

Message withdrawn at poster's request.

LoveBuckets Thu 30-Jul-09 21:37:11

LOL, it's not much to ask the psychs to check out the flippin NAS website every now and then is it? And just think how many parents out there are suffering because they're not as pushy and confident as us lotsad.

WetAugust Fri 31-Jul-09 00:23:37

Hi Siblingrivalry

Exactly the same happened when my son first saw CAMHS. He was misdiagnosed - we then sought a private DX = complained to CAMHS -and then went back to CAMHS who agreed with the private dx that he had ASD.

I did a lot of research into how this could have happened.

Until about 6 years ago, in our area and I suspect in other areas ofthe country too, children with suspected ASD would have been referred to a Communication Disorder Clinic (CDC) and assessed by Paeds and Psychologists specialisting in learning difficulties and ASD.
Children with suspected psychoses and nueroses would have been sent to CAMHS where they would have been treated by Psychs and Psychologists.

Thenthe NHS reorganised services in our area and dictated that all ASD cases would be refrred to CAMHS. That left us in the ridiculous situation where specialist Consulatnt who was a leader in the field of ASD dx and support who worked in the CDC was no longer allowed to acceoted NHS referrals for ASD dx.

Instread the patients he would have expected to have seen were referred to CAMHS where they had no experience whatsover with ASD. Unsurprisingly my son was immediately misdiagnosed with a severe psychosis by an incompenet CAMHS Consulatnat who had no ASD experience and misinterpreted his benign ASD as mental illness.

A very frightening time until we took him for a private dx to a competent ASD expert.

So it does happen, although probably not so frequently these days. That's why i no longer accept opinion/ dx a doctor tries to force on me that I am not happy with.

Well done for following your instincts.

mumslife Fri 31-Jul-09 16:05:01

Message withdrawn at poster's request.

DidEinsteinsMum Mon 03-Aug-09 01:23:30

Thank you sibling. It helps me feel strong enough for another meeting with GP where I am pushing for 2nd opinion and they are dragging feet. but have a question and dont want to hijack so will wander off. Maybe someone can offer some wise words as i could use them being so in the middle of the situation.

siblingrivalry Mon 03-Aug-09 21:11:26

If you haven't already started a thread, ask away -we can all help each other.

DidEinsteinsMum Mon 03-Aug-09 21:27:34

I think at the moment it is beyond help. I have a complaint letter thread and stuck something in a Melatonin thread being very naughty by mnet rules and highjacked it a bit. Problem I have got is GP has said that he thinks ds is boarderline and diagnosis is impossible and we have a team of individuals who see what they want and cant get past ds's verbal skills and subject knowledge. plus i have been working with children with similar problems and employed the necessary techniques early so he has good coping strategies. Can link to a few previous threads if you are interested, all the issues are covered in various locations. It is very complex and there are behaviour issues, OCD issues, change phobia issues, Sleep issues, emotional development issues, IQ issues (very bright rather then behind for his age - but particularly the difference between emotional and iq/educational development), sensory issues, lack of fear and attachment, discovery and hypersensitivty to fear and attachment, hypersensitivity to sudden sound, sleep movement etc. We have good days and bad. Today is a bad day due to issues outlined in complaints thread and lack of sleep (up 6times btwn 3am and 8am) problem beside him adapting coping strategies well is that he surface copes so few people (medical) see the reactions i see due to him not feeling comfortable enough in that environment. Medical people want school to deal. He doesnt start school until sept. Have been left in limbo with a good deal of hand washing for forever.

Phew, sorry that was a bit of a rant. Hit the vodka tonight in a rare drink and being a lightweight one vodka and orange has tipped me over edge of making sense. Hopefully will sleep soon. Mum has offer to catch ds before midnight so i get a few hours peace.

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