English: Logo of World Autism Awareness Day, A...

Logo of World Autism Awareness Day, April 2, by UN (Photo credit: Wikipedia)

A friend asked my to write a post about world autism awareness day. I appreciate this isnt a post about business marketing or social media. I have absolutely no problem if you want to stop reading now, and skip onto something a bit more, comfortable?

Some people reckon ASD (autism spectrum disorder) now effects around 1:50 people on the planet. Some say thats because we are getting better at understanding and diagnosing autism. Its certainly the case that the so called autistic spectrum of disorders covers far more ground than it used to.

As soon as my family was effected by ASD I started to realise that most pople dont have a single idea of what is at play. Its usually understood to affect kids, but most people think there is some sort of super power involved  or that ASD children all go on to be scientists and mathematicians.

In order to be currently diagnosed with an autism spectrum disorder then you will have issues in three distinct areas. This is know as the triad of impairments. Most parents with ASD kids can tell you all about it

1. Problems with social communication

2. Problems with social interaction

3. Problems social imagination

This means children (and adults of course) struggle to make friends and have so called normal relationships. Autistic people are not often referred to as the ‘different ones’ these days as thats not very politically correct. More likely ‘ordinary people’ will be labelled ‘neurotypcial’ relating to the neurological element of ASD.

However, all parents with kids on the ASD spectrum know about the crushing pain of having a child that is ‘different’ no matter whatever the pc brigade call it. We watch them happily flapping or jumping around and on the one hand see our beautiful kids enjoying life, and on the other see other parents, and sometimes kids whispering about our darlings and trying to work out whats wrong with them.

Kids with ASD can have enormous problems with communication. Not only can they easily misunderstand facial expresions or miss the subtlties of every day communication (see point 1) they can also struggle with speech impairment or even worse, language impairment.

In a child with a language impairment, even if they can speak perfectly well, they may not be able to understand you, or have the ability to make you understand them, because they lack the language to do so. If affected, you will learn this is particularly heartbreaking.

The idea of restrictive interests and repetitive behaviours are most accessible to most people. They think of kids with OCD, and understand, and maybe even feel a little like they can relate. Unfortunately, almost all of the behaviours you would associate with ASD are common in the general, neurotypical population.

This issue is when all these behaviours hit these kids all at the same time.

And of course, they hit the parents at the same time too. And the rest of the family as well.

Far from having super powers, these kids and their families face a daily set of challenges most people will never understand.

Coupled into some of this stuff, are associated issues and health worries, like sensory problems.

Imagine a child that can’t bear the touch of their parent as they try to console them over yet another obsessive thought that has struck from out of no where.

Imagine what the parent of that child goes through. Every minute of the day. Every hour that child is awake (don’t get me started on the sleep disorders) every day of that child’s life.

There are of course, many ups to having a child with ASD. Their unique perspectives on life, the focus their intelligence can bring, the love they have in their hearts for their families, and the lessons they teach us as human beings.

But what doesn’t help is the uneducated, ignorant attention we get from people that have no idea what ASD is about or the challenges it presents our families.

We aren’t bad parents, try living with our kids for a day.

They are not naughty, or out of control kids. Try living with what our kids live with for a day.

Have a bit of sympathy. A nod here or a concerned look there goes a really, really long way.

‘Huffing’ past us as we drag our dear children along the floor of the supermarket again, makes things a million times worse.

Autism is an extremely complicated issue. There are a tons of differing perspectives and different organisations involved. They all have different views and different ideas as to a way forward.

What I know is that there isn’t an awful lot known about this stuff. And next to no money spent on trying to undertand  it. I hope that over the next few years, as the Autism Explosion continues to grow, and the research money increases, we find out more, and understand more about how to help these families.

We dont really want anything else, just some help along the way. A bit of support for what we are all going through, just a little bit of acceptance for what our kids are going through and what they need in order to cope.

Im not interested in the politics, Im not interested in who’s right and whose wrong.

But I guess that acceptance all starts with awareness? Though some argue there is plenty of awareness around now, we need a little more positive action? Maybe a World Autism Acceptance Day?

Whatever, thats my little bit to help, thanks for listening.

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10 replies
  1. Paul C Robinson
    Paul C Robinson says:

    What a fantastic post! While its incredibly disheartening to hear that other parents whisper in corners and what have you, it reminds me of 2 things I heard that I try to tell myself in some difficult situations. The first is this ‘what other people think of me is none of my business’. Harsh but true. After all, Ive also just formed an opinion on them too! The second came from my director when I worked on cruise ships, his mantra for the staff when we became frustrated with passengers was ‘they only see what they see’. It doesnt make them right, or better people, but it enables you to deal with them in a better way.
    I hope all is well with you and the family.

  2. Jo
    Jo says:

    I love this! It gives so much insight and I’m glad that you decided to do it! I love this sentence…”Im not interested in the politics, Im not interested in who’s right and whose wrong”.It’s true…I’m not..I want the best for my child as does every ASD parent. Unfortunately we have to fight for this as you know. Da iawn Mr Dowling x

  3. Kaarina Dillabough (@KDillabough)
    Kaarina Dillabough (@KDillabough) says:

    Oh my goodness, what an amazing post on a special day! I have a client who has written a book about the experience of her ‘aspie’ daughter Olivia. She’s created a facebook page here http://www.facebook.com/MayIBeExcusedMyBrainIsFull and wrote the book because there were so few resources available that spoke to the experiences and perspective of the child. Thanks so much for this post. I will be sharing on their facebook page, and if anyone is interested, I hope they will check it out too. Cheers! Kaarina

  4. seangrey54
    seangrey54 says:

    Hi Tony, I am sure it wasn’t easy writing this post. I have been a coach with Cardiff Stars learning disability tennis club for about ten years. In that time I have been fortunate to have met many children and adults that perhaps sit outside of what may be considered normal in our society. I have a little understanding of the strain and pressure on the parents as I have experienced the constant care that is needed to keep the children ‘safe’. Over the years I have also met many wonderful carers that are able to give the parents a well deserved break. I wish yourself and your family well and that you are able to get any help and support you feel you need. Sean

    • Tony Dowling
      Tony Dowling says:

      Thanks for a lovely sentiment Sean. I must say, the way our networks has rallied around me over the years has played a bit part in helping us to cope. Thank you for your kind words

  5. Eiry Rees Thomas (@EiryReesThomas)
    Eiry Rees Thomas (@EiryReesThomas) says:

    Thank you for sharing this post, Tony. I relate to it totally on many levels, as you know, and I’m playing my part in terms of contributing educational resources that have been created to include special considerations for children with autism. It’s been at the heart of my thinking since Day One and that will always be the case. I consider it a privilege.

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