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To think its fantastic that a series focusing on ASD but wish they got their facts right?

(25 Posts)
cricketballs Tue 22-Mar-16 21:49:26

As DS2 is ASD I'm over the moon that there is a serious drama showing how ASD impacts on the whole family; but why can't it be realistic in terms of dx?!

In reality it takes a long time tine being on the waiting list, observations at school, numerous visits repeated questions etc; howver according to "The A Word" a dx can be achieved in one appointment and the report delivered straight away

Fanjango Tue 22-Mar-16 21:51:09

Too true. By the time we finally get to diagnosis it will have taken nearly two years, for varying reasons, but definitely not speedy!

Fanjango Tue 22-Mar-16 21:51:58

Oh and no, YANBU

ProudAS Tue 22-Mar-16 21:53:01

I did get a DX in one appointment but it was private and after being passed around for years.

ProudAS Tue 22-Mar-16 21:54:22

I haven't seen programme BTW but heard that there was one on.

cricketballs Tue 22-Mar-16 21:57:11

The issues regarding social issues, for example not being invited to parties etc is very real so well done on that point

mumsnit Tue 22-Mar-16 22:05:16

Yes! YANBU Just been saying this to DH. Gave no picture of the struggle many families face in being taken seriously. Or of the waiting times to see a paed.

Very good drama though. My DD is disabled (not ASD) and I totally related to the lack of party invites. It really hurts to see your child excluded.

ProcrastinatorGeneral Tue 22-Mar-16 22:07:01

I think for the sake of a compact series they've simplified diagnosis. They've had a lot of input from the NAS from what I. Have been told.

For what it's worth, from GP appointment to diagnosis for my older son was a ridiculously short time, and I was given an on the spot diagnosis by the lady from the local autism team who did his all day assessment.

Different this time around. Three SaLT assessments in, and referred to the autism team which has a massive waiting list. Onwards though, one foot in front of the other and plodding on.

Earlyday Tue 22-Mar-16 22:11:31

We got our diagnosis very quickly. DS has high functioning aspergers. The psychologist met him a few times, got us to fill in lots of questionnaires and did a school visit. He was also seen by a Physio and OT. It was all done quite speedily from the time we suspected and initially went to the GP and got referred.

I don't understand why it takes longer for some people - is it waiting lists or are the specialists not able to tell exactly what issues your child has?

Emochild Tue 22-Mar-16 22:14:45

We got a diagnosis 5 months after dd's initial camhs appointment

Took 18 months to get a camhs appointment though

CwtchesAndCuddles Tue 22-Mar-16 22:17:19

I agree that they made it look like the dx process was fast but ds went for a Ruth Griffiths development assessment at 2 1/2 - at the end of the appointment the paed said he there were issues (no kidding) I asked if it could be autism and he agreed with me and it was treated as a working diagnosis from that point but not confirmed until 18 months later due to long waiting lists for formal assessment.

I didn't identify with much of the programme as their story is very different to mine but the end when the boy ran off in the park really hit a nerve, I could really identify with being the parent of the child who is playing up in front of all the judging eyes of watching parents.

cricketballs Tue 22-Mar-16 22:20:47

My DS had a statement since 4 and has been in special school ever since (he has LD as well) but as his school met his needs so well we didn't push for a formal dx until he was 14 (the realisation of the cuts, his age etc forced us), the waiting from the initial GP visit to request a dx to a formal report took 24 months. In this time we were interviewed 3 times (same questions, different people).

DS was observed at school, had assessments done etc and this was someone who was known to the services involved (the consultant in charge was a regular gisitor to his school and knew DS2 well)

mayflyaway Tue 22-Mar-16 22:24:12

we got ds' diagnosis is one appointment with the community paeds (NHS) two months before his third birthday. We had the GP and HV refer him about 3 months before that (& also to audiology to rule out hearing issues). It was very quick - two hours with a consultant paed & a ASD specialist SALT. He has what they used to call HFA (& dyspraxia).

I think the main issue wrt to diagnosis is the postcode lottery. Here HV can refer directly to the community paediatricians & diagnosis is usually pretty quick (follow up is non existent & therapies would be a joke even if they were actually offered).

TooAswellAlso Tue 22-Mar-16 22:28:44

Just posted on the thread in telly addicts.

We were referred to paed in July 2011. October 2011 we had an appointment with a social communication disorder diagnosis. July 2012 we had a salt appointment with an aspergers recommendation. November 2012 we had an Ados assessment and diagnosis immediately. DS is almost identical to Joe. We took 12 months basically.

They'd already had salt on the programme. And one appointment. This was the Ados assessment and diagnosis. Not dissimilar to our pathway. I fully believed it could happen how it was portrayed, it was not wrong.

TooAswellAlso Tue 22-Mar-16 22:29:13

And DS was 5.

DollyMcDolly Tue 22-Mar-16 22:33:17

I've been waiting nearly 4 years. Was on the waiting list for 3 years for an appointment for cahms down in Berkshire then moved and now in the north east we've been waiting over 6 months. DS is 8 now. School has been great up here and is chasing it up

TattyDevine Tue 22-Mar-16 22:34:03

I know what you mean, but for a TV show I can see how they had to cut to the chase.

I only caught the last half or so so I'll be watching it on catchup properly tomorrow. Looks like a good series and plenty of other stuff with other characters to keep me interested - not many TV shows grip me!

TooAswellAlso Tue 22-Mar-16 22:34:52

Bloody hell Dolly. We were so so so lucky. Even when we had a cahms referral it came through within a month.

TooAswellAlso Tue 22-Mar-16 22:35:27

I will never ever moan about the NHS in this area again!!

MayhemandMadness Tue 22-Mar-16 22:36:05

Its a drama trying to get an important message across to an audience, most of whom will have no experience or knowledge of Autism. How to get a diagnosis is not the most important message for the makers to concentrate on, trying to dispel some of the myths surrounding Autism and increasing general awareness is. I hope the rest of the episodes will be focused around this but we will have to wait and see.

Bluebolt Tue 22-Mar-16 22:43:36

DS2 was given a DX straight away but would be decscibed as very classic autism with severe learning difficulties, he was just over 2 and had blood, genetics and hearing prior paed appointment. But that was rare compared to other families in the support group we attended.

imip Tue 22-Mar-16 22:44:12

A 2 year wait for diagnosis here. We were dismissed by the community paediatrician, then referred to an early intervention service for a year, who keep telling me dd was not on the spectrum but would help her out with her behavioural issues. Most of the blame was placed with me. I was a little neurotic because I had suffered from infertility and the stillbirth of my first child.

We were finally referred to cahms after dd started self harming at the age of only 6. It took around 8 months to get the diagnosis from cahms.

Dds teacher told me it was my parenting that was the problem.

I must say, I am still massively fucking bitter about being dismissed by those who were supposed to know better.

kipperydippery Tue 22-Mar-16 22:52:53

I haven't watched it. I'm not sure I can sad DD now 9 has Aspergers, we were lucky (if I can call it that) to get a diagnosis at her first assessment she was such an obvious case.

Am I wrong to wish that actually they might have struggled to diagnose her, she might not be so far on the spectrum?

Today DD has refused to get dressed for school, or eat any breakfast, I eventually got her to school. I went to my part time job (can't do full time, no childcare provider will have her), got home.

She spat at me & thumped me, stamped on my foot & screamed abuse at me for over an hour. Today was a normal day... I dread to think about the effect this is having on her younger sister sad

AdriftOnMemoryBliss Tue 22-Mar-16 22:55:42

took us 15mo to get to CAHMs, but we had dx within 2 months of that first appt, but we had done ALL the back ground work, so we had the ed psych reports, the independent autism specialist report, OT reports, SO many observations from school, hearing tests, SALT assessments...etc

I got to CAMH's and basically laid it all out in one appt.

but it took us nearly 5 years of fighting to get the referral to them.

shazzarooney99 Tue 22-Mar-16 23:01:20

6 years weve been waiting for a diagnoses.

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