Thursday, 23 November 2017

The A Word so far; my top five explanations

Autistic boy resting on his knees in a green park surrounded by trees and grass and a cloudy sky

Have you watched any of The A Word yet?  I'd love it if you did. If you don't have autism in your family you may have wondered what's going on at various points in the last two weeks of the show. As tonight we approach the half way point of the series (I think), I thought I'd throw together my top explanations for what Joe's been up to in the series, as identified not by an expert, just by me and my experiences with our autistic and neurotypical kids.

Sometimes people and kids with autism do things that seem strange to others.  And just like Joe's family, on The A Word, we've comes across these kind of things.  Here's what you might have noticed and what I'd guess was going on.

1. "Were you missing Terry this afternoon?"  "I was missing Terry this afternoon."
When Joe's parents ask him questions about why he was upset at school today and Joe doesn't answer, Joe's Dad makes some suggestions for him.  Was someone nasty?  Terry was away today, did he miss Terry? Joe responds by repeating the question back to him.   If someone didn't know any better they might think Joe is answering but for our sons', this wouldn't have been the case.

In our case this would have echolalia.  It is 'echoing' or repeating words or sounds made by someone else. It's there because the child doesn't understand what's being said or hasn't figured out what's being said yet, but thinks a response is appropriate.  The above would be an immediate echolalia where the repetition is immediate.  Joe may also have done delayed echolalia where he repeats what others have said in the past in response to a question in the present. "We don't want another baby, we have enough with me."  Perhaps this phrase, obviously copied from Joe's parents, struck a chord with us too.

2. I'm autistic
Joe comes out with the phrase 'I'm autistic'. It sparks plenty of discussion about how to talk to Joe about autism.  This is something that parents with autistic kids face all the time.

Some kids notice they are different.  Some don't. Our Anthony found out about his autism because we felt he no longer accepted himself and couldn't understand why he found things difficult when others didn't.  He'd hit himself in the head when he couldn't get something he knew he should be able to get. He asked to be killed and brought back with a brain that worked properly.  It was then we knew it was time to tell him about himself.

A while later, he'd not only come to terms with his autism, he accepted who he was in preference to being anything else.  I was so proud of this moment.

3. A new school
The attitudes of parents at schools can honestly be heart breaking.  However, parents aside, a mainstream 'regular' school must provide education to a child unless they are unable to meet their educational needs or if by having the child will disrupt the education of others or if having the child would be a be a misuse of resources.

One of autistic son's has previously coped in a mainstream school.  Our other son has not and goes to a new school very similar to Joe's.   It can be a difficult thing for some parents - accepting that their child is not only different, but so different that they can't go to a 'normal school'.  I was fairly surprised that Joe's LSA in the programme didn't know about the change of school.  Usually they will have been involved in conversations about the progress of the child.  LSA's are also often employed directly to be with a child, so this LSA may have thought he was about to lose his job.

Getting into a specialist school can be extremely challenging and hard work for the family.  It can take months or even years to make the change and almost always needs an EHCP - the legal document about a child's educational needs.  Joe's parents travel for hours every day taking Joe to school.

4. "Music, Walk, School"
First scene of the second show hit the nail on the head for so many autism families.  Joe's regular routine to school is listening to music, then taking a walk, then going to school.  As Joe is going to a new school the routine has to change and Joe's parents have been preparing him for the change.  I don't know if they had thought about preparing him for the change in his morning routine.  The result is they have to stop their car on the way to school so Joe can have a walk.

The need for routine in our autism household is immense. Our David establishes routines so quickly. He feels safe with routine, it takes away the uncertainty in life.   Particularly where a routine is around a change, what we call a transition, these can make the move from one thing to another easier. David had a tiny change to his school pick-up routine.

It's caused meltdowns for the best part of a week.  The strangest thing.. it took us ages to figure out what was different for David.  When there was nothing we could do about it, David had to simply learn to cope with the change.   Change for our older son, Anthony, puts him off kilter for the day.

5. Meltdowns
I think the closest thing I've seen to Joe having a meltdown was when he was in the car and his iPod ran out of battery.  I looked at my other half and giggled "How can they not have got a bunch of power banks already?".  We've always got one in case the iPad runs out of power.  Joe's mum, Alison, put the radio on so Joe could still listen to music.  When they arrived at the school, Joe got upset that he couldn't listen to the son again.  His mum tried to explain, Joe displayed echolalia and tried to cope with the fact that his demands were not met.

Our eldest has managed to cope most of the time when he can't have something he feels he needs to cope.  We can find an alternative, like in fact the school did.  Anthony has certainly matured a lot in the last few years and being nine years old now, it will be interesting to see how Joe's character develops on the TV.

When Alison, got home she mentioned the drama to her husband.  But her husband had a different idea of what a real drama was.  Because, he'd seen another character in the show, the son of one of Alison's parent's support group, called Mark, having a meltdown.

A meltdown is ‘an intense response to overwhelming situations’. It happens when someone becomes completely overwhelmed by their current situation, that they can't cope and temporarily lose control of their behaviour. This loss of control can be expressed by verbally by shouting, screaming, crying, or physically by things like kicking, lashing out, biting, or in both ways.

In our home it can happen because of too much (or even too little) sensory stimuli, too much pressure, or the feeling that something just isn't right and can't be fixed. Like the school routine change for David.

According to Mark's mum, Mark was 'only three on the richter scale', which my partner and I smiled at as we heard.  Mark was marching around, obviously upset, physically hitting walls and himself. Joe's Dad found it very hard to watch.  Truth is, everyone finds meltdowns hard.  David once had a meltdown over a shoe.  Yep, a shoe.  When his meltdown was over, he picked himself up.  When his meltdown was over, I went off and cried.

Well, that's a rather large explanation, but these are all just based on what we have experienced in our home. Whatever your opinion of The A Word, knowing a bit more and understanding a bit more about things like the above may mean you understand us better.  And that's gives my family a much better chance of being accepted too.

What do you think to my observations?  What aspect of the show would you help explain to others?

12 comments:

  1. A brilliant summary - to be honest I'd not even thought about how confused others may be by it all! It's so second nature to us. I'll look out for some more points like this tonight ��

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  2. I'm with Steph - I didn't even think about the fact that others may find it confusing! It's great to see a tv family going through similar to us though, makes it feel "normal", whatever that is. I'm liking seeing people with autism being portrayed more often on tv and such these days - even in the Power Rangers movie earlier this year, one has autism (the blue one!).
    I think The A Word is fantastic, and a great way to show insight into how others' lives can be. Obviously it has good ratings or there wouldn't have been a second series! I hope it carries on for a few more. :)

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  3. I love this show. We are not a family with an autistic child but as I was discussing with my cousin in law perhaps we are all a little bit in the spectrum. I feel it’s a great show that just increases my admiration for parents if autistic children. X

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  4. Great explanation. I think as autism families we just nod along when perhaps others do have questions but maybe don’t quite know how to ask. interestingly my colleague was asking how good the show was and how realistic only today. I am so glad it is sparking this kind of discussion. Thank you for linking up to #ablogginggoodtime ��

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  5. great series to also raise awareness and open discussion about autism. I've never watched the A word so far #KCACOLS

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  6. I've never seen nor heard of teh show, but will definitely look for it. We have a nephew severley autistic and your words explain so many things for me. Thank you! You are helping me to be a better aunt. I welcome all awareness and know my limits too. I will broaden my scope. #kcacols xoxo

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  7. I haven't seen any of The A Word. It sounds interesting though. As an autistic adult, I'm so positively surprised that Joe uses identity-first language ("I am autistic"). I'm glad your son accepts who he is now too.

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  8. I haven't seen this show but it sounds interesting for all parents to watch Thanks for linking up to #KCACOLS hope to see you there again.

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  9. I haven't had a chance to watch this yet, but you've made me want to carve out some time for this show. #kcacols

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  10. We are not a family with an autistic child but perhaps we are all a little bit in the spectrum. I have nothing admiration for parents if autistic children, especially in ways in which we can learn from too. Thank you so much for linking up with #KCACOLS and we hope to see you next time.

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  11. This post is such a great way to augment the educational value of the show. Shame the show itself hasn't either done the same thing itself, or boosted pieces like this.

    #SpectrumSunday

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  12. They haven't shown the A Word in Australia yet so I haven't had the chance to check it out. I love your explanation for others not as familiar with autism - I'll need to see if anyone is going to run it here!

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
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