Autism and A word

[iem0128]

Watched A word with intense scrutiny. If you have an autistic child, do you go into their bubble and follow the bubble from the inside or do you take the child out of the bubble.. Share your experience please?

Do you take the child to the same place where he finds the rabbit to release it? What do you think of the series?

I know that every child with asd is different but I have never once seen joe have a full blown meltdown. He seems calm all of the time?
My personal experience is of my 13 yo son who is high functioning, hi s anxiety is heightened and is scared of the world .
The only thing he has in common with joe is the need for ear defenders

I can empathise with the strain it all puts on relationships as their needs are all consuming and everthing else takes second place.

I have three diagnosed with ASD (two more Aspie, one more linguistically impaired). I have found that they’ve changed over time as to how they are impacted by the various ASD traits. Most of the time, I have tried to take them out of the bubble. The youngest (now 10) and most severely affected was supposed to go to a specialist provision as they didn’t think he’d cope in mainstream. However, whilst he is very behind academically, socially he has come on well in mainstream as he tends to copy the behaviours of those around him. He was heavily affected by sensory problems when he started (noise / food / touching wet textures). Now they don’t frighten him at all. However, as all children with ASD are different, this would have been completely the wrong decision for another child.

Agree with PP though that the needs are all-consuming.

Coming at it from a slightly different POV...As an educator I’ve worked with 100s of autistic children and adults. I’ve only ever met one who was similar to Joe in her mannerisms and she would also have very intense meltdowns and also moments of incredible talent...real highs and lows that the A word doesn’t reflect at all.

I was quite frustrated watching with family last night as they kept saying “is that what THEY are really like?” meaning autistic children and I was having to answer...no.
Every autistic person is different of course but I think this particular series is sugar coating it. Joe presumably is not meant to be high functioning...it doesn’t closely show the realities of having a child profoundly affected by autism. Stimming behaviours and meltdowns are not accurately depicted.

I almost feel it’s the Disney depiction of Autism. And I don’t like it at all, it’s doing a disservice to autistic people and their families. I like the series as a drama but only if I ignore Joe’s diagnosis...so that’s not great on a series called “The A Word”.

As for “the bubble”, we patiently try and bring the children back into reality. We might have some sensory grounding techniques, we might use calm and repeated questions ie;

“Joe, do you want the red paint or the blue paint?”

“Joe, red...or blue?”

“Joe. Pick up your brush. Now. Would you like...this blue paint...or this red paint...”

And this would be hundreds of times a day...peas or carrots, left shoe or right shoe and many variations! “Sit in your chair. Pick up your pencil” x 10. During a meltdown there might be something we know helps to calm them down or bring them back...weighted blankets or wrapping themselves in a scarf, tactile fabrics or materials, a fan...all known on an individual basis. The needs are all consuming as PPs say.

Another slightly different perspective here. My DD21 had a very late ASD diagnosis. She was the middle child and has an older brother and younger. We have really enjoyed watching the series together and were excited there was a third series. Last night however was a difficult watch as my marriage broke down 2 years ago. My DD was /is more high functioning than Joe but that came at a huge cost to her mental health and our family dynamic. My overwhelming memory of her as a child (and I have huge guilt about this) was that she was difficult, exhausting and completely all consuming to deal with. A diagnosis would have helped hugely. It was definitely a contributing factor and led to issues in my relationship (exDH also, with hindsight) on the spectrum).

I often wonder how Joe is going to function when his parents are gone. In special needs schools, apart from understanding and managing the meltdowns, do teachers also introduce empathy and outside world? Do they teach or incorporate acceptable routines and manners. Or they just understand them and let them be?

I remember my friend told me to take my son out to some noisy places, gradually acclimatising my son to noises which he couldn't stand. He has no problem with noises now. In fact, he makes too much of them. In this soap, nobody seems to think that the autistic child will still have to cope with the outside world, the real world. It seems to me Joe is dictating what the parents are supposed to do, except for the divorce, of course!

I know in the specialist school my friend works at (which is actually just for autistic children) they all work towards all the things to help them get better in society whatever that may be that they need. They do loads of life skills with them.
Like if one child is obsessed with one subject and only wants to talk about that they try and help him talk about other things as well, all so they be prepared and everything

Autistic people have empathy.

Autism is a wide spectrum and of course, some autistic children have empathy or could be taught to be empathetic. The term autism is a broad umbrella including those who are mute, deaf and cannot communicate, but there are also those who are intelligent, although could be fixated in some way. I actively intervened after my son had had his statement. And that has to be done when a child is young. Instead of letting him listening to his music walking along a quiet road, a child should be explained the importance of listening out for danger .. He was nearly run over and yet neither of the adults told him that he shouldn't think the world revolved around him. Instead, he's in the middle of a flux which ebbs and flows and had its inherent danger. I was gobsmacked when Joe said he wanted to walk, his family would follow without any explanation and go into the bubble which is neither safe, sound or practical. Never once was Joe told to look at people speaking to him! How does that work in real life? I had to tell my son that if he didn't look at people in the eyes, he appeared rude or even not having heard a word of what other people were saying.

Interesting series that make you think, but I am glad that it's over. I hope there is no more far fetched plot lines. The marriage of the down couple captured joy and to tell the truth, those two are more normal than me!

@NameChange84 as a mother of a severely autistic DS with SLD I totally agree on the Disneyfication of autism on this programme. Although I have only watched the first series, haven't brought myself to watch the second.

@NameChange84 It's now on box set and you can watch the whole series in one go if you have time. I know it can be painful. There are touching moments.

I believe all people with autism have empathy they just deal with it or process it in different ways and may have empathy for a range of different things -some of which is socially acceptable some not

I am a teacher of children who would be classed as low functioning -mostly non-verbal, self-injurious behaviours etc, and the parent of a high functioning adult with asd an aspie as she refers to herself who is at university. You see the same issues at both ends of the spectrum but the mental health issues my daughter has to cope with are incredibly damaging.

It's impossible to portray autism on tv as you will only ever show a snap shot. The diagnostic process depicted in the first series was laughable. I also think if they showed a full blown meltdown (rather than just Joe lying on the floor or throwing his headphones in a lake) from a child actor then there would be further issues as to whether that was the right thing to dramatise.

What I do like about the A word is that it explores the dynamics around the wider family -something that is rarely done and I think it's helpful that people understand that Autism affects the whole family, not just the person with the diagnosis.

In response to the question do you enter their bubble? -well yes, sometimes, and sometimes you bring them out. Autism is hugely complicated by anxiety. When anxiety is high this can lead to meltdown or shutdown -no learning or social interaction is going to take place in this state. Sometimes you need to enter the bubble, build relationships, support a place of calm and then introduce challenge -be this social or academic.

I think autistic people have more empathy than us NTs. It just doesn't look the same

If by “the bubble” you mean that I don’t always ask my child to ape behaviour and understanding that are beyond him and that we do things he enjoys then, yup, we do that. Of course he does the same for us/me as you know sometimes I need to do things he doesn’t get or understand.

I hate this kind of thinking as though autism is intrinsically bad and should be obliterated from his every cell. He isn’t a broken version of who he’s supposed to be.

I like the programme (DS - Aspie and high functioning). I think his sister is wonderful with him. Love his grandpa too - so straight!

As a drama, I enjoy it.

As a portrayal of ASD, I do not.

Both my DC have ASD and both are very different from each other. Due to those differences amongst all those with ASD, I guess it would be hard to make a drama that was accurate of a majority. And yes, it is all-consuming and they have got that bit right.

As for the bubble question, I'm not quite sure how to express this, but I think what I have done for both my DC is try to be a bridge between their "bubble" and the "real" world. Sometimes visiting their side and trying to empathise with how things look and feel there, but also waving to them from the other side of the bridge, explaining what it is like over here and trying to coax them across when necessary. Trying to find ways to make the crossing as easy and painless as possible. I have also spent huge amounts of time trying to explain to people what strategies work to build bridges for them.

Really not sure my metaphor works, but I hope you can see what I mean.

The grandfather is also supposed to be on the spectrum.

I believe all people with autism have empathy they just deal with it or process it in different ways and may have empathy for a range of different things -some of which is socially acceptable some not

Agreed.

Have not seen it but you often get disneyfication or cliches eg good doctor, atypical - although at least the latter has shown meltdowns before.

I've only watched the first two series, I won't be bothering with the third. Just wanted to say about the fact children with Autism do have empathy. My 5.5 year old is non verbal but is never aggressive and has never had a meltdown in all his life, he's actually very placid. He seems to build up his own tolerance to things. He doesn't need ear defenders, and the only noise he seems to be scared of is hearing a motorbike in the distance (he was scared of the blender but has got used to it now).
So meltdowns have never been a part of my sons Autism (he was diagnosed at 2.5).

I also work with children with autism (and other SN) and I also felt this was a very toned down portrayal of what many families experience living with a child with autism.

On the other hand I thought There She Goes was absolutely excellent and incredibly moving and lifelike.

I have two children with autism. I’m disappointed in yet another show where the main character is a boy with autism (I have two girls). The repeating of words my youngest child does but I think it could’ve been done better. But then maybe it wouldn’t get as many people watching if they saw the more difficult side to raising a child with autism.

I’m disappointed in yet another show where the main character is a boy with autism
I’m disappointed it’s yet another character with no LD and who is verbal

@Itisbetter fair point. My youngest is 7 and non verbal. Lots of sensory issues. But I suppose it’s not TV enough. It was done in conjunction with the national autism society wasn’t it?

The vast majority of “high vis” autism is male aspie. I find it a bit weird.

I think they did have a character have a full scale meltdown last series - not Joe but the teenage lad whose mum the dad fancied. (Sorry - my recall of the series is a bit rubbish.)

The bloke who wrote it was once a teacher of autistic children I think.

The grandfather is also supposed to be on the spectrum.

Is that official or is it just what we all suspect?