To think 'The A Word' has lost it a bit

[Justmeagain78]

This series has been so moving and educational so far I was utterly disappointed with tonight's episode. What could have been a realistic portrayal of the struggle families go through to get support turned into a ridiculous farce. The specialist with a childhood grudge against Joe's mum was just silly and unrealistic. The mum is also starting to be portrayed as a pantomine villain rather than a flawed mum who loves her son. The family dramas have overshadowed Joe and his issues - I really don't care about granddad, the Viagra and the ukulele lady or watching the family lurch from bickering to snogging - I wanted something better than Eastenders! Such a shame.

my main objection, apart from loathing the mother and the way she's been written, is this eloping every morning not being addressed.

Of course, its ENTIRELY normal for a barely 5yo (let alone one with SN) to get themselves dressed and be allowed to walk out of the house and go wandering along the road every morning entirely on their own.

In real life, someone would have reported them to SS or something by this point.

You kind of jumped on my post saying how that shouldn't have happened, how you've read through the nice guideline, how it's bad practice...

I was just trying to put out a positive (if you can call it that) experience of the whole diagnostic process and felt like I was having to defend what happened to us.

Yes Kitty, that point has driven me mad! Who does that?!

I've noticed that the majority of tv critics seem to be raving about it, people with no links to autism think it's fab, and most of us with a direct experience of raising a child with autism are deeply frustrated by the ridiculousness of it all. I'm still watching it, but I'm wincing constantly because it's so dreadfully poor on dozens of levels, and I've yet to come across anyone who says it reflects their own experience, even partly.

The worst thing about it, for me, is the 'meltdowns' which are portrayed as nothing more than chucking a few cushions around then lying on the floor for a few seconds till Daddy plays your favourite music then all is dandy again. Well, what bollocks that is! As someone upthread pointed out, a true meltdown in most cases is a total lack of self-control, lasts for several hours, rumbles for several more (or even days), and is so utterly exhausting that the child is worn out afterwards. Yes, I know that's not typical of all meltdowns but that is what most of us know as a general experience, and certainly at Joe's age. People without insider knowledge will watch this guff and think it's an accurate reflection of what living with autism is like - it is devaluing the severity of the experience and has the potential to be harmful to the public's perception of autism.

As a drama, I have no problem. But people WILL watch this and take it seriously. That's what worries me.

I have read that it is possible to dx autism without MDT assessment, but in the UK the preference is for MDT. I think it depends on the seniority of the assessing professional, but I may not be remembering that accurately so don't quote me. Certainly I've heard of private assessments being carried out by one professional only, so it does seem possible, if not the norm under the NHS.

She was a senior SaLT with many years of assessing and diagnosing Autism. She certainly had my boy down to a tee and saw every tiny little thing he does that the teachers had never picked up on.

The meltdown thing is dreadful. I bloody wish DS melted down like that. Would save us a fortune on furniture, glasses, crockery etc!

Wevecome my DD was also diagnosed at her first appointment (with a paed), although the official diagnosis came only after the appointments with the SALT and psych, months later.

We were very lucky with how easily we got DD assessed and diagnosed, for which I am hugely grateful. So whilst I know that the tally of professionals listed by zzzzz is the norm for most diagnoses, it isn't necessarily the case for all.

DD's nursery flagged up issues and did some 'special measures' stuff with her - small group work to improve her socail communication and compliance, but no mention of formal assessment/diagnosis. No issues were flagged up by any of the three schools she attended (though there clearly were some issues, still), in fact the (lovely) second infant school she attended put her on the G&T list. I took her out of school in Y4 (2nd year of junior) to home ed her, because she wasn't happy at school any more and I didn't feel that they were meeting her needs. I think that ultimately made it easier to get her assessed and diagnosed a year or two later, because because I didn't have to push a school into organising that. So my tally of professionals was:

Visited GP with a list of concerns and asked to be referred to a developmental paediatrician. He was a new GP, just qualified (I was asked to complete a feedback form about him afterwards), and initially he told me that the school would deal with a referral. When I told him she didn't go to school, he was clearly very shocked (he wasn't English), and then tried to cover up his shock. He asked what I wanted him to do, and I told him which hospital and dept. I wanted the referral to go to. I think if I'd said the prime minister he'd have referred me, at that point. So, GP 1

Appointment with developmental paed came through months later. We had a couple of hours with her. No forms or anything, she just talked to us - especially to DD. I'd been convinced I'd be laughed out of the office, because on a good day, you'd never in a million years think that DD is autistic. She knew just the right questions to ask, though, to get to the relevant stuff. She was amazing. ❤️ So, at the end of that appointment she gave us a verbal diagnosis of Asperger's, contingent on the SALT and psych agreeing. 2

Saw the SALT a few months after that. Very uneven profile on the tests. Scored very well in certain areas (that you wouldn't expect with ASC) but low on others. 3

Saw psychologist a few months after that. Again, no forms or anything, she just talked to DD. DD was anxious in that appointment, so her aspie behaviours were much more obvious than at the other appointments. Psych confirmed the diagnosis. So, total tally 4.

I know that we were very lucky and that this is an unusual trajectory.

Oh, and I've found the A word very annoying for it's absurdity, for all the reasons listed on the thread. And fucking hell I really want to slap the mother! The 'meltdown' was absurd - that was a brief and very mild tantrum, not a meltdown!

Its not it's!

i'm not sure i'll watch it after this point.

I think they missed a huge opportunity and have let the community down.

The series is perpetuating ALL the myths that need to be dispelled.
Meltdowns are just emotionless tantrums.
Its the families fault because they're dysfunctional
it can be 'fixed' with the right handling.

DS is 9 and while he has regular meltdowns, few of them last more than 5 minutes, but in that 5 minutes he absolutely goes to bits, screaming, shouting, hitting, running, door slamming, crying.. and they usually end with us curled up on the floor with me stroking his hair and applying some bear hug pressure and stroking his hair and telling him how much i love him and how its ok.

What Joe was portrayed doing is not meltdown, those are shutdowns... and i think its because he's such a young actor, if they'd pitched him slightly older they might have been able to do that accurately.

Joe does things with calculation, as thought he's considered it carefully first - like the breakfast bowl incident, if that had been me and my DS, the bowl would have been flung clean across the kitchen and i'd have been screamed at before he ran off.

that was a brief and very mild tantrum, not a meltdown

And that's what troubles me. We have enough of a job trying to explain the difference between a true meltdown and a tantrum, when naysayers are giving us "All children do that", and to have Joe's minor upset's portrayed as 'meltdown' does nobody any favours. It's got me very cross, actually.

As for school, what little we are seeing of Joe in school does suggest that he is presenting with some issues that I would expect a half-decent school to investigate further (and obviously, all primary schools in Cumbria are highly trained at spotting the signs and being incredibly supportive to parents, given that this is tv-land and all ). His social isolation and lack of engagement for one thing would (should!) be a considerable red flag. We're not hearing anything about how he is performing academically in school either.

It's a drama, Streaky, it's a drama - don't get so het up woman .

Kitty I don't even think Joe was having a shutdown. There was no aftermath - he recovered immediately with no residual effects. You could have a point about the young actor, but to be fair they should cast properly so the story can be presented accurately, otherwise what's the point?

On a plus note, Christopher Ecclestone is still rather lovely, isn't he?

If we're talking about personal experience if I follow the correct soothing steps with ds2 he doesn't meltdown therefore in my experience the party scene was an accurate depiction of heading off a meltdown, eg don't touch him, give him his music.

Ds also had a preliminary diagnosis within 4 months of seeing the community paediatrician and firm diagnosis 6 months after that after ruling out hearing and genetic causes.

Sometimes a child really isn't complex.

my Ds's diagnosis was done and dusted within 3 appt, but i had done A LOT of background work before hand, knew what i was talking about and was able to provide a lot of observations from school, OT's to do with his Dyspraxia and behaviour during those therapy sessions and a report from an autism specialist the school had bought in to assess him during the waiting process.

Between that paperwork, the face to face with DS and the 3Di test, it was over and done with quickly, but it really was just a formality, it was glaringly obvious to everyone!

My DD is 3 and has ASD. She is actually a LOT like the character of Joe. Passive, no extreme meltdowns, she uses films on her iPad the way Joe does with music. (She's obviously not allowed to wander along roads by herself). At a play, she'd behave a lot like Joe did. I appreciate this won't be the case for a lot of people, but I found the ASD portrayal close to life, for the particular profile my daughter has. Her diagnosis was also in just a few appointments (inc hearing tests etc), although the waiting time and hassle to get past useless HV were, let's just say an obstacle.

That too zzzz!

at 9yo my day revolves around fighting DS into his clothes, chasing him around with his shoes and constantly reapplying his socks to his feet, having to make sure his food is just 'so'. helping him eat, dress, wash, toilet.. in fact at joes age, my DS was barely toilet trained! He never sleeps (i love melatonin).

I was eally hoping for an accurate portrayal of life with an autistic child, and instead we seem to have a soap opera where Joe is an annoying side show.

I think drama is going to be a bit broad brush - the characterisation is quite often very crude.

I think this thread shows how DX varies between areas. Actually zzzz you asked me on another thread where I live - I'm in Kent. If you remember, I'm just going through the DX process again because DS was discharged 3 years ago with no DX. I took DS to see the GP in early March and his first paed appt is in 2 weeks. So just over 6 weeks for initial referral. I'm amazed it's so fast

I watched the first two episodes then haven't bothered. The acting, casting and screenplay seems to on a par with a hastily thrown together GCSE Drama production to me... Cheers, Beeb - soooo glad my licence fee is being used so productively!

Ha - I've probably got you mixed up with someone else

I've just had a look at the clinic letter again - DS is being referred to a SALT this time and he's never seen one before - despite being assessed for ASD (and still living in the same Trust area!). I wonder if she'll be a child whisperer like the one on the telly

I absolutely agree with you that it doesn't really show what it's like to have a disabled child. They did show the judging a bit (through the party and Joe's behaviour at the play) and Alison's obsessive video watching is, I suppose, standing in for the sleepless nights and all night googling I suspect most parents go through.

And I'm going to write to the BBC about that 'tactical autism' line because that really is an appalling thing for them to show HCPs saying.