Why we Need World Autism Awareness Day

Today is World Autism Awareness Day. In this guest post, MN blogger Matt Davis shares what his son’s autism has meant for his family, and argues that there’s still much to do to ensure that people with an autistic spectrum disorder are treated with understanding and respect.

A year-long, punishing process of tests finally came to its conclusion with the words “autism spectrum disorder”, delivered in a paediatrician’s room. It was a tongue-twister that deliberately acted as a soft landing for the harsher truth: “your child has autism”.

The diagnosis assuaged the regular bouts of heartbreak I felt at Isaac’s regular bouts of distress. It was the alibi for his perceived anti-social behaviour. But I came to realise quite swiftly that a chasm existed between what some people knew about autism and what most people didn’t. If the condition hadn’t touched someone, it just wasn’t on their radar; autism awareness was minimal at best. On the other hand, professionals, experts and parents who had accepted their child’s diagnosis were awash with facts and immersed in the world of autism.

I joined Ambitious about Autism’s online community ‘Talk about Autism’ and quickly benefited; questions were posed and answered, discussions launched and new people nurtured with the help of its Community Champions. It became a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance, exhaustion and difficulties that parents of children with autism battle.

So what is autism? An impossible question to answer with any semblance of brevity. For last year’s World Autism Awareness Day, Ambitious about Autism ran a Twitter campaign called ‘Autism is…’ asking everyone to share their thoughts, feelings and perspectives on what autism is to them. The answers tweeted invoked honesty, warmth, sadness and happiness – a pretty accurate flavour of what autism really is.

The campaign was such a success that the charity is repeating it this World Autism Awareness Day. I’m supporting it again because awareness is a big deal for me. Things have improved drastically over the last 20 years, but there’s still a long way to go. People just don’t know enough about autism. It affects 1 in 100 children, yet the condition is often misunderstood.

Autism’s myths are myriad. People assume Isaac won’t have eye contact, that he’ll be quiet and introverted, or that he must have mind-boggling talents. None of these statements are correct. Isaac is a boy you remember when you meet him. He is funny, inquisitive, determined – at moments tender and full of wonderment, but also unable to know his own strength at times. He loves to learn (if allowed to in his own way) and he never forgets anything.

For my family, autism has been a game-changer – but certainly not in a bad way. We don’t only have a bright, funny little boy – we have a heightened understanding of disability and other people’s needs too. For me #AutismIs heightened everything – love, sadness, stress, happiness.

My wife and I wanted to do something else to mark the day – the more people know about autism the easier life can be made for everyone affected by it, and of course we wanted to raise money for Ambitious about Autism, too. 

The Happy video above came about because my wife, a musician, received a video from her friend Abigail of her son Reuben who also has autism. In the video Reuben was singing Pharrell’s ‘Happy’, on his own, so perfectly, and you could see the joy he experienced as he sang. My wife decided to make a short film set to the song with Isaac and Reuben doing things that made them happy. Simple and honest, just like any other children. We wanted to celebrate the boys. Autism is something to be respected and acknowledged, but we wanted it to be about the boys having a ball.

Long before my son Isaac was diagnosed with autism at the age of three, I saw how the world, with all its peculiarities and obstacles, was that little bit more hostile for him. Seeing him struggle – often articulated as screams, anger and crying – seemed so unfair to me. I didn’t subscribe to the ‘terrible twos’ or ‘naughty toddlers view’; there was something about Isaac’s tears that was different. 

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A Candle In A Hurricaine

This post is probably going to come off a bit harsh.  If nothing else, a bit rough.  There is a hard reality to this life, one that often sits in the shadows and no one wants to look behind the curtain to dust the windowsill.

The past year has been a pretty rough one in the AMD household.  Sparky is hitting puberty at this point (he is 13 now) and all of the changes and hormones are making things much more difficult.  He doesn’t understand what is going on and he thinks there is something wrong with him.  Yes, he’s been told by everyone from me to the psychologist to the mobile therapist to the mental health therapist that it’s all normal and he’s ok.  For all he understands, we may as well be talking to the wall.

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you’ve lost your fight
But you’ll be alright, you’ll be alright

The past several months have led to a surge in behaviors as he has both regressed and escalated.  His coping skills and ability to manage has regressed.  His behaviors have escalated.  At the moment we are working overtime to keep him safe.  I think the worst of the issues we face is a strong elopement urge.  His need to wander, especially at night.  If you recall he did this years ago, during the daytime, but it was rare.  It’s a more common occurrence now and this time, at night.  He still has absolutely no sense of danger.  How much more frightening can you get? 

‘Cause when push comes to shove
You taste what you’re made of
You might bend, ’til you break
‘Cause it’s all you can take
On your knees you look up
Decide you’ve had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Then you stand

I always took for granted that the house alarm would work so well to keep him in the house.  That was quickly erased when he made the connection between the key fob on my keys and the house alarm.  About two weeks ago, just as I was falling asleep, I heard the door open.  He used the fob to disarm the system and go right out the back door.  Being deaf I never actually heard the crazy loud beep of the system disarming (but it must have roused me subconsciously enough to hear the door).  I don’t even want to think of what would have happened had I not woken up.  We live in an area where we are surrounded by main roads.  He could have been gone in no time.

Life’s like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you’re given before it’s gone
And start holding on, keep holding on

It doesn’t end there.  Naturally.  Why would it?  His mood is no longer stable.  We can’t seem to find a good balance anymore.  He’s been depressed, aggressive, and self-injurious.  I ended up finding him a new psychologist just two months ago.  Around that same time we added in Family Based Mental Health Services (the most intensive services you can get).  We adjusted his medications.  Everything feels like a waiting game anymore.  We are now looking at taking him to one of the major hospitals a couple hours away to have him evaluated by the psychologists there (Cleveland, maybe Pittsburgh) and see what they can do.  I don’t seem to be catching a break and it doesn’t look like it’s going to happen any time soon.

‘Cause when push comes to shove
You taste what you’re made of
You might bend ’til you break
‘Cause it’s all you can take
On your knees you look up
Decide you’ve had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Yeah, then you stand

I now live in this constant state of fear.  I lock up the keys when I go to bed.  I sleep lighter than a feather.  Every night it’s the same routine:  Goodnight, I love you, Stay safe, No shenanigans, Stay in bed, Right to sleep, DO NOT LEAVE THE HOUSE.  Being so disadvantaged I am terrified he’ll find a way out and I won’t hear him.  By the time I discover it, it will be far too late.  I thought I knew was sheer exhaustion was.  I was totally wrong.  I sleep all day when he’s at school.  I can’t concentrate.  My migraines are sheer at peak level “Hell.”  To say I’m stressed is probably the understatement of the century.

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place

All I can do is keep pushing, keep moving.  Just pick myself up, dust myself, and keep going.  I’ve been fighting for so long I can’t possibly stop now.  There are days, I won’t lie.  So.  Many.  Days.  Where I just want to throw my hands in the air and give up.  I’m so worn down, so frustrated, so exhausted, so defeated.  I cry more now than I think I ever have, I actually cry daily, and it doesn’t take much to start the flow.  I often feel like I’m riding an emotional roller coaster to hell and back again.  Then every morning, when I wake up and he’s safely in his bed still, I feel better.  I breathe a little easier.  I put on my happy face mask and thank God for keeping us through another night. 

Yeah, then you stand,
Yeah, yeah, baby
Woo hoo, woo hoo, woo hoo

Then you stand, yeah, yeah

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