The Autism Spotlight Misses Its Mark Again.

Beware: this is a reflexive response written with knee-jerk fury about this piece on the BBC:

http://www.bbc.co.uk/news/health-21969439

Essentially: single dad and "full-time carer" of a 10-year-old boy with autism and cerebral palsy writes about "surviving" school holidays. You'd think that this would be a good piece to have in the mainstream press, no?

No. It fucking sucks. Here's why:

1. Heroism.

I've now worked for Bristol Parent Carers for a year, and in that time I've learned a lot of things about disabled children, how things work and why we use the words we use. For example, I classify myself as a "single-parent carer". The phrase "parent-carer" is really important because it makes it absolutely clear that I am not an employee; I do not have choice in the matter. This little two-word phrase represents a huge national battle waged by parent-carers across the UK to secure a definition that was unique to them and described their situation. Finally it has been adopted by all agencies and service providers.

But not by this parent. "Full-time carer" is a phrase that is typically used by people who are paid to look after someone else; who do it as a job. It suggests they get to clock off and go home, whereas the phrase "parent-carer" makes it very clear that we do it all the time, day and night, come rain or shine.

Also, there's the "single dad" thing. You'd think a single parent is a single parent, right? Wrong. A single parent is still very much expected to be a woman: Single dads get to specify they're male. And why? Because they get all the sympathy for not having a woman there to do the family stuff for them. Perhaps you might think that's profoundly sexist of me, but I can't tell you how many times I've seen this one. Single dad conjures up an expectation of a tragic story: what mother would abandon her children? Let alone disabled ones?! Well, she must have met with a sticky end, leaving this poor, heroic fellow to manage on his own! Gosh, what a grand chap he must be! "Single dad" is, quite simply, a cheap bid at winning sympathy, and I fucking hate it.

No, he's not a single-dad and full-time carer: he's a single-parent carer and that's that. That's what everyone fought hard for; that's what got accepted; that's what works for everyone.

2. "Trial and Error"

"Both of them dread school holidays but have learned how to manage them, he says, through a process of trial and error."

Uh-huh. So I'm assuming that London has no parent-carer networks? No SCOPE? No National Autistic Society? Oh wait, it really does! In fact, it has more money being spent per child with a pertinent condition than anywhere else in the country.

In fact, these are two charities that, upon diagnosis of cerebral palsy (CP) or autism (ASD) will pay for families to attend very long very expensive training courses which equip parents of children with these conditions with the tools required to cope with every day life as well as changes to routine and so on. I know; I've done the NAS one. In fact, everything I'm going to say later on is pretty much lifted word-for-word from the NAS's Early Bird training program which I attended as soon as Euan was diagnosed.

When you have a disabled child you don't have the luxury of trial and error. You haven't just been dropped into Disabled Land; you learn and grow with your child. Trial and error is another way of trying to look heroic (see 1). It's the equivalent of "Well, it was really hard, but we toughed it out and survived". There's no need for this. Either the pawingly awful sentiment or the process itself.

3. What the Fuck Is Autism, Anyway?

"...who craves the familiarity and consistency of routine, the lack of sameness..."

So, wait... he likes consistency or he doesn't? Because "lack of sameness" is kind of the opposite to "familiarity and consistency of routine", or am I suddenly crap at understanding simple words?

And what's to stop you from making up your own time-table of stuff to do over the holidays? We keep a calendar and write on it the things we've agreed to do and stick it up where Euan can find it. He knows exactly what his routine is down to the fact that I sleep in until 9am if I want to when there's no school. This is basic stuff, and I mean achingly simple to the point of it being the very first thing any practitioner will tell you to do. We adults keep calendars to know what we're doing - it's not hard to keep one for our kids, too.

4. Expectations.

Clearly the whole home-school diary (a very basic element of educating a child with ASD, whether in mainstream or special placement) has left this father (because let's not forget he's a dad...) confused. Here's the brilliant thing: it's not about you, sunshine.

The book is a very basic communication tool to allow schools to know what to talk to their pupils about when they return to school, whether it's the following day, after a weekend or after a school holiday. They're not expecting the most fabulously exciting holidays - they just want to be able to talk to your child about something that your child will be interested in. It's to help the autistic child transition back into school after a break. 

It's also there to allow parents to note anything that went especially well or badly, for example if they went to visit their favourite relatives (good) or a pet died (bad). The expectations are not that the teacher will read and judge you on your parenting skills, but that they will read and know better how to communicate with a child who typically finds communication challenging.

This is fucking obvious.

5. Now You're Just Kidding Me...

"For The Boy, as I'm calling him for the purpose of this article, to save his blushes, it's just a big mortuary filled with dead animals, apart from one very much alive, animatronic Tyrannosaurus Rex, that nobody sees fit to warn you about. We've only been once."

Okay. "The Boy" IS AUTISTIC; he doesn't give a shit what you call him, and certainly won't get embarrassed about it. If you call him by his name, he will know you're talking about him. If you don't, he won't care either way. I mean, seriously... shit like this makes me want to hurt people.

It's as if this bloke is expecting his 10-year-old to be texting rolling-eye smileys to all his posse that his dad DARED to write a piece about him and then published it in the national press. "Man, what a draaaaaag my dad is!"

What's more, the Natural History Museum has this fabulously detailed website that tells you EXACTLY what you can expect to see before you visit. In fact, all of the London museums do because, and here's the thing, I took my own autistic child there last year. Only, besides a new museum, Euan had to cope with a new method of transport and a new journey (coach, Bristol-London), a new place to sleep, a new routine, a new city AND the animatronic dinosaur.

We did just fine with it all, too. Not because I'm a super-heroic single dad who uses trial and error to manage my child's happiness while desperately staving off the unfairly high expectations of his school but (wait for it...) by using the website, drawing up a schedule and working to prepare my child ahead of time.

Which is how, in 4 short days, we were able to visit the Natural History Museum, the Victoria and Albert, the Science Museum, the Royal Albert Hall and Westminster with the London Eye thrown in for kicks. And one thing that was absolutely apparent during that trip was that the word "autism" is magic in London. You jump queues, you take shortcuts, people shepherd you about and pay attention to what you need. It doesn't happen in Bristol and I found it shocking how well we were treated when I told someone Euan was an autistic child, whether we were getting on the Tube, the London Eye or taking a tour round the Darwin Centre.

Moreover, if your kid isn't into natural history... don't take him to the Natural History Museum! There's a truly amazing science museum just two minutes' walk around the corner and you have to walk past the also-amazing Victoria and Albert Museum to get there. But there's so much more to the Nat. Hist. Mus. than just dead animals, like the geoglogy zone, the Earthquake room, the Cocoon. In fact it has a super-nifty website that will tell you exactly how to find the shit your kid won't hate...

6. Unnecessary Public Spaces.

"The one nearest to us has really high ceilings. So if you stand in the middle of it and scream really loudly when you can't have the same Doctor Who book you've borrowed for the last 18 months, you get a brilliant echo that goes on and on and on - long after the security guard has asked you to step outside."

There are places it strikes me as being obviously bad places to visit with Euan who, at the very least will expect to be able to talk to me and, most likely, will need to make a little more noise than normal in. Libraries are at the very top of that list. Why do it to yourself? Why take your kid to a big, old library and expect him - at the age of 10 - to be able to understand the need for quiet? It's autism anathema. It's selfish and stupid.

So let's assume the library thing is a learning opportunity where "The Boy" is being taken to learn about everyday life. If you know your kid likes that one Dr Who book, and you know he'll kick off if it's not there, why not buy him his very own copy? I know people who have lodged their own books with their local library so that the book their child wants is always available for them: libraries are very good for this. Another thing libraries are very good at is making it obvious for parents to know when it's a good time to take their potentially noisy kids along: all libraries in Bristol have reading and play sessions when everyone expects things to get rowdy.

I just don't understand what this guy is doing: either he's got a terrible library service, he's too stupid to ask when is best or he's just indifferent to the pressure he's putting his child under by taking him along when it's not rowdy kids' time. Moreover, he's been going there for at least 18 months - does he really not have a relationship with anyone who works there?

7. Make Better Rules, Muppet.

  • Get there early. The earlier the better. Preferably before the rest of civilisation has woken up. The concept of queuing and waiting is lost on The Boy who has no time for such trivial events.
  • Select your lane carefully. You want one that's as far away from other human beings as possible. Other human beings cause anxiety and create noise, which only serves to divert attention from The Boy's own attempts to make noise. If Lanes 1-4 are occupied, Lane 37 is ideal.
  • Beware rented shoes. Never underestimate just how odd a concept it is to swap your own perfectly reasonable shoes for a pair that have been worn by multiple strangers. For the duration of the game, prepare to be asked at least 17 times a minute if his own shoes are safe.
  • Always use the gutter guard. The Boy may try to convince you that he doesn't want the guards up any more, to block the gutter, as he is now good enough at bowling. He isn't. The barbaric yelp accompanying each ball that trundles slowly down the gutter, will make the noise he made in the library appear like a whimper.
  • Never, ever win. Introducing the concept of losing to The Boy is important. But this is the child whose frustration with the world has led to him being excluded from nurseries, childminders, after-school clubs, holiday play-schemes, mainstream schools and even a special school. So while he's holding a 15lb bowling ball, it's not the ideal time to take him on.
  • Smile please! The stress of this trip will probably prevent you from leaving the house again for the rest of the holidays. Take lots of pictures where you're pretending to enjoy yourself. The aim is to fill up 41 pages of the school holiday diary. The other page can be used to write The Boy's name.

Let's be fair, some of these I agree with. Getting there early is a good plan for going anywhere but... well after that it gets retarded. And quickly.

Why, for example, do you want to be away from other people? How is that helping your child in any way? There are times I don't want Euan to meet anyone else, and those are the times we stay home. If we're going to leave the house, there is an expectation that we will, at some point, have to spend some time in the company of other people. Why not come to terms with the fact that your child is going to make noise and need to stim and shout and get excited and just accept him? Fuck what anyone else thinks - it doesn't matter in the slightest. Let your kid be your kid and give him the space and time he needs to come to terms with the situations you continually insist on putting him through.

And the rented shoes thing... If you know your kid likes bowling, why not buy him his own pair of bowling shoes? Isn't it kind of obvious? If "normal" people who don't have profound sensory needs have issues with sharing shoes with strangers, is it really such a big leap to understanding that your autistic child will find it utterly objectionable?

"Never, ever win" is a sentiment I can appreciate... until I read the rest of the paragraph. Oh give me a break! "My kid is wild and violent! I'm a hero for trying this at all! He could actually hurt me if I piss him off, yet here we are anyway!" (see 1 again). More bullshit heroism and, yeah, ignoring perfectly good advice given by charities who know this sort of thing inside-out.

The concept of losing represents a loss of control and a failure to perform. If an autistic child has engaged in a task at all, it's because they enjoy it, so failing to perform or losing control of the situation is going to piss them off. So let them lose at other things and don't play their favourite games to win or lose. Just play them.

Whenever Euan loses, I reward him immediately. And whenever he loses, it's at something he's either indifferent to or something irrelevant. We spot Mini Coopers and have to be the first to shout "Mini Cooper red!" (or whatever colour the thing is). If I get there first, it doesn't matter because he gets a tic-tac for not getting angry that I beat him. And if he gets there first, he gets to say he won.

And, seriously, I'm not surprised this kid has been tossed out of this many schools with a parent single father who seems more concerned with what others think about him than how his kid is actually doing; who thinks the home-school diary is for racking up reputation points than for helping his teachers to help his child and who seems to want his child to be in the world and yet somehow invisible to it at the same time. I'm sad and I'm angry by this whole piece; the dad can't seem to get over the fact that it's just not about him: what his child needs or why he's challenged by the things he's challenged by are utterly irrelevant.

But, wait for it! IT'S OKAY REALLY! Because...

"John William's blog, My Son's Not Rainman, is written to accompany his comedy show of the same name, currently touring the UK before a run at this summer's Edinburgh Festival . "

...HE'S JUST BEING FUNNY!

Well, phew. For a moment there I thought he was genuinely talking about coping (badly) with a child on the autistic spectrum and not making a bid for publicity based upon him being a hero. That sure was a close one.

This sort of shit does nothing to normalise autism as the rest of us non-touring comedians experience daily life. In fact, if anything, this sort of misrepresentation and demonstration of horrific misunderstanding of one's own child does us far more harm than good: The knock-on for anyone not in contact with autism regularly is that single parents struggle to cope. And, worse, that children with CP (and no autism) are this "difficult", too.

Trouble is, unless we have an agent and a book / blog / stand-up routine to push, our every day lives (and skills and ways of coping) just aren't deemed interesting enough for mainstream consumption. And for parents who are just learning about their disabled children, this piece says just one thing: You're on your own, and it sucks. When the truth is there is lots and lots of help and support out there, from big national charities to a part-time curator in a museum.

Finally. Nope, I shall not be reading his blog, which is (by admission) written only to accompany his tour... which perplexes me as he's a single-parent and he's touring the country which means either he's not going to be a "full-time carer" for a while (so someone else will have to be) or - horrifically - dragging his disabled kid along with him. No wonder he fears and hates the home-school diary.

Also, to note, I'm aware that what I've written slants heavily toward ASD and barely mentioned CP at all. This is because ASD requires behavioural support while, strictly speaking, CP children do not. However, if this child has a dual diagnosis, there's likely to be a whole team of clinicians thumping their heads against walls after an appointment with this fellow. CP kids also exist along a spectrum of severity, with the most severely affected children being all but unable to communicate and needing wheelchairs to aid their mobility. However, their minds are completely functional, which poses all kinds of other problems. However, this child has enough movement to go bowling, walk around a super-huge museum and direct aggression towards people, so I can only conclude that his major challenges come from his ASD and not his CP.

Either way, though, it's an appalling piece of trite shit fed to the masses to that some fellow can sell a few more tickets at his "Haha Autism's Funny!" show. Sometimes the price is just a little too high - and this bloke has misjudged his audience.

Views: 59

Comment by JMac1949 Today on April 6, 2013 at 6:52am

Some people just don't get it.  Makes you just want to smack them up aside their pointy heads.  Sigh...  R&L

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