Guest post: Why we need World Autism Awareness Day

(21 Posts)
MumsnetGuestPosts (MNHQ) Wed 02-Apr-14 11:38:41

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.

Matt is also a parent patron of Ambitious about Autism, who are running an #AutismIs Twitter campaign to mark the day. Do find out more here, add your thoughts and experiences to the thread below.



"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.

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."

By Matt Davis
A Dad's Perspective

Do tweet @MumsnetTowers with your #AutismIs messages, and we'll retweet.

Paintyfingers Wed 02-Apr-14 14:50:04

Thank you for your lovely post. Your son sounds a delight smile

I can't see the links because I am on my phone but will try to look when I get home.

I think this day is a great idea - we need to learn to value people for who they are.

It's a shame to see so few posts on this thread!

Ive been out in my town centre today raising awareness of autism with my local NAS group. I hope more people read this and learn a little bit about autism.

I too have a child on the spectrum and my hope is that as he gets older society will be more understanding about autism and what it means for those living with it.

I agree YHIMH. Am shocked at so few posts??

Thanks for sharing Matt. I am engulfed in autism. Family members and I work with adults with autism. All different and wonderful (albeit challenging) in their own ways.

Reuben has an amazing voice, I prefer his version smile

Willyoulistentome Wed 02-Apr-14 18:03:31

Thanks Matt. Just wanted to say I loved your post and loved the video. I'm going to look into your links.
It's true people know so very little. When I told my boss about my sons recent diagnosis of AS he just brushed it off with "Oh I used to have that". He had no idea what I was talking about.

cansu Wed 02-Apr-14 20:11:46

Great post. I have two children with autism and am also a teacher. I am amazed by how little even some of my colleagues know about the condition but also their lack of understanding of the challenges of parenting a child with autism.

AnimalsAreMyFriends Wed 02-Apr-14 20:47:23

A lovely post smile

I have 2 sons with ASD, and a dd who does not. I wouldn't swap any of them.

People are still so ignorant about autism - particularly the older generations.

ChishandFips33 Wed 02-Apr-14 20:54:12

A beautiful post, thank you so much for sharing!

We've been supporting the day and have had an amazing time. Things have moved on in understanding Autism, lets all help keep them moving :-)

Paintyfingers Wed 02-Apr-14 21:11:35

What a lovely film - thanks so much for sharing this.

Anniecarrieson Wed 02-Apr-14 21:34:51

Love the video, well done Isaac and Reuben!

respectdue Wed 02-Apr-14 23:06:08

What a lovely video from two beautiful boys.
My ds is almost 8, he has autism and ADHD. Life is pretty challenging at times and it has been a long journey of us knowing that autism was part of our boy but the professionals couldn't/wouldn't see it. Three years on with diagnosis, statement and special school under our belts, people are shocked that we struggled so long to get dx.

thornrose Wed 02-Apr-14 23:58:59

I'm trying not to be slightly down that there are just 12 messages on this thread sad

There is a Q&A thread which seems to have attracted more traffic - personally I shall be continuing with autism awareness in RL and on FB for the rest of the month. (Don't MN as much as I used to but will pop in here too).

I think people are just blinkered unless something affects them directly TBH.

AmberLeaf Thu 03-Apr-14 10:33:38

I haven't watched the video yet, as I am on a bus but I will later.

re few posts. it isn't unusual for guest blog threads not to have many replies. I read lots of them but only reply if I feel I have something 'worthy' to say.

I have a son with autism too and while I think it is better in some ways, I am still regularly left shock at the ignorance of some people, even more so when they are professionals who should know better.

Paintyfingers Thu 03-Apr-14 12:12:08

I think also one of the reasons for few posts is that many people are supportive, but are left not knowing quite what to say, which is the whole reason we need this day.

My DS was thought for a while to potentially be on the spectrum before his hearing problems were dx. The way he was treated as a result of his at times challenging behaviour - frustration due to his speech delay, extreme fear of the unfamiliar (due to not being able to hear) means I have an inkling of how far we have to go before all dc are fully valued by the while of our society and allowed to be themselves.

AmberLeaf Thu 03-Apr-14 18:13:43

Just watched the video with my son. My son thought Reuben was very brave to sing for everyone.

What a lovely voice! smile

Paintyfingers Thu 03-Apr-14 20:13:58

Yes he sang beautifully smile

Hope more watch this video, keep bumping! smile

We wore our onesies on weds and raised over £650. My DS is a unique and wonderful Aspie, as they all are. Mx

ApplesinmyPocket Tue 08-Apr-14 22:43:50

What a lovely video. Made me smile. Happiness is catching!

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