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Five Conversations I’ve Had to Have About Autism

Posted by on Aug. 22, 2017 at 2:03 AM
  • 7 Replies

BY: JAMES BALDOCK for Metro.co.uk (Read more: http://metro.co.uk/2017/07/26/five-conversations-ive-had-to-have-about-autism-6799447/#ixzz4qNhtDlyo )

 

The first rule of talking about autism: the way it affects you will be completely different to the way it affects everyone else.

Autistic Spectrum Disorder is a minefield, and we’re still in the early stages of figuring out how it works. Not easy to do when individual experiences are so incredibly varied.

But while autism affects different people in different ways, there are recurring themes and misconceptions – and conversations that you have more than once.

Here are some of mine.

1. The apology

‘Excuse me,’ said the woman in the park. ‘Your son was being really nasty to my four-year-old.’

If you’re careful, you can avoid confrontations like this. It’s a matter of circumnavigation: you steer clear of certain situations at certain times, and you always keep one eye on your child.

But I’ve still had to drag him out of concerts and supermarkets, apologising to security guards and ushers and disgruntled shoppers.

Public understanding and awareness of autism has increased exponentially over the years, but there’s still a long way to go – and even if that understanding is in place, children still misbehave, and ultimately the buck stops with you.

So sometimes it’s easier just to offer the apology, which is where we came in.

‘I’m sorry,’ I said to the woman in the park. ‘He’s on the spectrum. She started the argument, and he reacted accordingly. He processed what he felt was wrong, but he didn’t take her age into account. He struggles with things like that.’

‘I understand,’ she said. ‘I have a nephew with autism.’

Don’t we all, these days?

2. Telling your child

The six million dollar question: when do you do this? Some children need to be told as soon as you’ve got their formal diagnosis – particularly if they’ve already surmised that there is something different about them.

By the time we actually got round to telling our child about his autism, his brothers and cousins had known for years.

There were reasons for the delay, but in a way it made the eventual conversation easier – we waited until his self-awareness and understanding had matured.

And in the end, we used this video, bookended with a five-minute explanation.

When we asked him if he knew anyone with autism, he said ‘Well, my friend has it. And I think I do too.’

And that was it. Sometimes, these things are less momentous than you think.

3. The myth-buster

No, we’re not talking about vaccines. If someone asks you about whether vaccines cause autism, you simply reply ‘No’, and then get them to read this.

No, this is more about the preconception that people on the spectrum have some sort of superpower.

‘Ooh,’ says the well-meaning friend or family member. ‘Autism. Still, I suppose that means he’s really good at maths, eh?’

Here’s where I’m liable to thump my head against the nearest wall. To be clear: I love The Big Bang Theory. I also enjoy Rain Man.

But they’re not an accurate reflection of reality. People with autism struggle with emotions, but they’re not all as blunt as Sheldon Cooper.

To be fair, the producers have never claimed that Sheldon has any form of Aspergers: this is a misconception that’s sprung up among the fandom.

The truth is, Sheldon is an aloof, emotionally stunted comic character who is whatever the writers need him to be. And that’s fine.

Similarly, Raymond Babbitt may have been a genius, but that is precisely what makes his story so interesting: it is anomalous. Autistic savants (people who exhibit advanced abilities) do exist, but they’re few and far between.

So I have to patiently explain to the other party that autism takes a great many forms and that you mustn’t believe everything you see on TV.

You remember that bit in Father Ted where Ted meets the blind priest on the plane and wrongly assumes he has super hearing? It’s like that.

(Incidentally, our son is really good at maths. But that’s hardly the point.)

4. Telling your family

There is no right and wrong way to approach this conversation, but we can recommend Ellen Notbohm’s Ten Things Every Child With Autism Wishes You Knew, which explained it in clear, simple and general terms to just about everyone.

Comparisons help. My sister-in-law recalled a fish market she’d visited with our niece – crowded, noisy and saturated with pungent aromas, and the sort of place you could only tolerate in short bursts. And that, we explained, was how sensory overload felt to our son.

Both children and adults alike can take a while to fully grasp the concepts that you take for granted – particularly when it comes to things like discipline, which you handle differently.

But people adapt. There are humps of misunderstanding, but you deal with them and then you all move on.

And in the meantime – when things are difficult – you stick to your guns and talk to the people who can relate more closely to your particular situation. Which brings us to…

5. The ‘support’ network

Ah, yes. All us parents of children with autism. United over sleep disorders, meltdowns and healthcare issues, and all in this together. Right?

Sadly not. Whether it’s a Facebook group or an awareness workshop, chances are you’ll run into at least one of the two types of irritating parent: the Competitor, or the Crusader.

Crusaders believe it’s their way or the highway. Whether it’s dietary intervention, relaxation CDs or reward charts, there is only one right way to deal with any child with autism – and that’s the way that happens to work for them.

That’s what they’ll tell anyone who will listen (and many who won’t), and woe betide you if you disagree.

Competitors are worse. You can spot a Competitor a mile off: they’re usually trying to look as frazzled as possible from the several meltdowns they’ve had to deal with already that morning, off the back of the two hours sleep they got the night before and all the issues they’re having with social services.

The role of the Competitor, to be clear, is to make sure that everyone knows that their own level of suffering is far worse than that of anyone else in the group. We all have our cross to bear, but this really shouldn’t be about one-upmanship.

Except it is, when the Competitor makes it abundantly clear that whatever you had to deal with last night, you can’t possibly be as downtrodden, luckless and emotionally scarred as they are – so don’t even pretend otherwise.

Which is presumably why they’re splashing their sob stories all over social media, or dominating a group conversation, turning the focus completely on them.

And how, you may be asking, do I actually manage these conversations?

I don’t, is the answer. I nod my way through the breakout sessions in complicit silence, and when the workshop wraps I make my excuses and leave as quickly as possible, always making sure I nab a biscuit or two on the way out.

Hey, don’t knock it. It’s a perk.


by on Aug. 22, 2017 at 2:03 AM
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Replies (1-7):
belle2780
by Member on Aug. 22, 2017 at 2:12 AM
I confess I have never been to a workshop for autism. I will say you can tell my husband and I have different parenting styles and you can tell when we are together who the kids listen to more. Both of our children are on spectrum and while they do have some limitations my husband believes they shouldn't have been told the diagnosis and frequently tries to say they are too young to learn life skills at 9 and 10 such as making their own sandwich or picking up their rooms, general cleanup while I believe in informing them of what's going on with their diagnosis and treatment, teaching them to make basic foods using a toaster or microwave and while they may need reminders, there is no reason they can't bring their plates to the sink, walk the dog or feed the pets and pick up their rooms and other messes they make.
mamamedic69
by Bronze Member on Aug. 22, 2017 at 9:59 PM

Good info to keep on the back burner. I have never been to a workshop for autism so I am not sure what happens there.

lady-J-Rock
by Niki on Aug. 24, 2017 at 7:08 AM
Autism workshops are fun. The last one I went to was focused on relationship building. I'm going to one next month called Sensational Fun. How to incorporate sensory play into everyday life activities.
I chose not to sign up for the for the love of locks. How to keep your eloper safe. You meet other parents.
noolsg
by New Member on Aug. 24, 2017 at 8:21 AM

My son has severe autism and learning disability and I learnt very quickly not to take him anywhere there are crowds.  Usually we go to mountains, beaches in winter and that is about it.  He grew up in a time when very few people had heard of Autism and I have had many hurtful remarks passed by other people  I am glad it is more known about these days

MixedCooke
by Group Admin on Aug. 24, 2017 at 9:24 AM
You sound EXACTLY like my husband and I! Some of it has nothing to do with the autism but just how we were raised. I was raised by a single Mom and did everything independently since I was 8 and at 20, his parents were still cleaning his room!

Quoting belle2780: I confess I have never been to a workshop for autism. I will say you can tell my husband and I have different parenting styles and you can tell when we are together who the kids listen to more. Both of our children are on spectrum and while they do have some limitations my husband believes they shouldn't have been told the diagnosis and frequently tries to say they are too young to learn life skills at 9 and 10 such as making their own sandwich or picking up their rooms, general cleanup while I believe in informing them of what's going on with their diagnosis and treatment, teaching them to make basic foods using a toaster or microwave and while they may need reminders, there is no reason they can't bring their plates to the sink, walk the dog or feed the pets and pick up their rooms and other messes they make.
belle2780
by Member on Aug. 24, 2017 at 11:23 AM
At 7 I was making basic dinners when she had to work late and meanwhile he was in boarding school and partying with his brothers since his parents died when he was still a kid. Their wives always cleaned everything.

Quoting MixedCooke: You sound EXACTLY like my husband and I! Some of it has nothing to do with the autism but just how we were raised. I was raised by a single Mom and did everything independently since I was 8 and at 20, his parents were still cleaning his room!

Quoting belle2780: I confess I have never been to a workshop for autism. I will say you can tell my husband and I have different parenting styles and you can tell when we are together who the kids listen to more. Both of our children are on spectrum and while they do have some limitations my husband believes they shouldn't have been told the diagnosis and frequently tries to say they are too young to learn life skills at 9 and 10 such as making their own sandwich or picking up their rooms, general cleanup while I believe in informing them of what's going on with their diagnosis and treatment, teaching them to make basic foods using a toaster or microwave and while they may need reminders, there is no reason they can't bring their plates to the sink, walk the dog or feed the pets and pick up their rooms and other messes they make.
repetition
by Member on Aug. 27, 2017 at 4:17 PM

I'm sorry my kids have Autism. I tell them I know it sucks, but what can you do? Their lives will forever be severally impacted until the day they die. It only becomes more obvious as they get older.

Support network? Ha! I'd rather sleep if there's a chance I'm not stuck doing something for one of my children. I'd rather go to a movie and talk to no one than compare war stories.

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