Today, April 2, is World Autism Awareness Day.
It is a UN sanctioned day to raise awareness, support, understanding and ultimately acceptance for people on the autism spectrum across the globe. UN Secretary-General Ban Ki-moon’s message sums up the aim of the day perfectly:
“This international attention is essential to address stigma, lack of awareness and inadequate support structures. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.”
As a parent to 2 children on the autism spectrum, all I want is for them to be accepted and to have the chance to thrive. It’s as simple as that. That is what every single person deserves, the chance to show what they can do and to reach their full potential.
The challenges that people with autism face are pervasive and lifelong. Autism affects every part of development – it is not just a communication issue or behavioural problem – it innately affects every part of daily life.
It affects communication – some people with autism are non-verbal while others struggle to coherently share their thoughts. It affects social interaction – people with autism typically find it difficult to maintain conversations, initiate friendships and understand social conventions. It affects behaviour – people with autism often have restrictive routines, obsessive interests and repetitive behaviours.
Autism is not just a childhood condition. There are many adults with the condition, possibly more undiagnosed than those diagnosed. And it does not go away, even though government funding in Australia is mainly directed at children under the age of 7. Funding for teenagers and adults with the condition is nowhere near enough to provide optimal outcomes for everyone.
It is universally recognised that early intervention (specialist intervention in early childhood) gives the best results for people on the spectrum. It provides the best chance to realise their potential. But successful early intervention is classed as 20 hours of intensive therapy a week, something that is out of reach of most families.
Education funding for children on the autism spectrum is being eroded across every jurisdiction as governments struggle to deal with the exponential rise in diagnoses. In NSW, kids on the higher end of the spectrum (kids like my own) no longer have access to individual funding. They, and their teachers, are left to cope as best they can in mainstream classrooms without funding for additional support.
Special education settings cannot meet demand and are not always the best option for kids on the higher functioning end of the spectrum. A worrying hole is developing beneath these kids and while money is ostensibly being saved by government now, the cost to the state later on in health and other costs, as these kids start falling through the cracks in the system, will be huge.
As a parent of 2 kids on the spectrum and as a carer, I want everyone to understand that properly supporting and accepting people with autism will go a long way to helping them achieve great things. I want everyone to understand that there is nothing WRONG with someone with autism. They face challenges, yes, but they have so many amazing talents and gifts to share.
We need to provide adequate support, at every stage of life, to ensure every person with autism has the opportunity to realize their potential. We need to support the families caring for people on the autism spectrum so they can continue to give all the love, support, help and care that they need. And we need to support educators, therapists and specialists to ensure they can continue to provide specialist advice and assistance too.
On this day, World Autism Awareness Day, I ask that you all take a moment to consider the challenges faced by people with autism and their families. Make the commitment to increase your own awareness of the condition. You can find out more here.
Awareness leads to understanding and understanding leads to acceptance. It is a little thing but if everyone took the time to do so, it would lead to much greater change.
Today I will be wearing blue to mark my support for greater awareness and I ask you to do the same. Again, it is a small thing but seeing your support will mean the world to myself and others living with autism everyday.
My dream is a world where difference in all it’s forms is celebrated and accepted. A world where my children can be proud of who they are. A world where they can be whoever and whatever they want to be. A world where they are fully supported through every stage of their life. A world where autism is no longer a term to be feared.
It is a wonderful, beautiful and infinitely precious dream. And I dearly hope to see it materialise one day.
Having a close friend with a child on the spectrum I have learned so much about it in the past 5 years. Today is a much needed day (and month) because there are so many people that just don’t ‘get’ it. Great post Kirsty.
Thanks Sophie – we need more understanding people like yourself to help demystify the condition. There are so many positives with autism but we do need help to properly meet the challenges that also come as part of a diagnosis. Let’s hope we can start on the journey to increasing understanding and cultivating acceptance.
I think it’s sad what’s happening to the state of our education system (due to funding). We will all pay the price of it, soon enough.
Good post.
Thanks Lydia. That is what makes me so incredulous at recent funding changes in the public school system in NSW – it really is saving a little now in order to spend a whole lot more later on. Not to mention the tragedy of people not getting the basic assistance they need to thrive – it’s simply not fair.
Thank you for your post Kirsty. I’ll be sharing it in the hope of spreading the World Autism Day message xx
Thanks so much Cathy – the more we can spread awareness, the greater the chance of increasing understanding and acceptance. Let’s hope that can come sooner rather than later…
Absolutely Kristy, good post. I will ‘go blue’ today xo
Thanks Annie – it looks like a few people wore blue which is just awesome! So heartening to see so much support, I hope it does translate in time to more understanding and acceptance. 🙂
Beautifully written Kirsty.
I am a complete noong, because I thought it was AAD yesterday, and so I wore my blue then, and also shared in on IG.
Now today, I have no blue clothes to wear!
I think I’ll just this post instead. 🙂
Thanks so much for sharing this Jess! It’s been heartening to see so many posts and photos in my various social media feeds today – looks like a lot of people are getting behind this. Let’s hope we can build on the momentum and put in place real and lasting change.
I share your dream too Kirsty – I’m teaching part time in the Special Ed unit this year and working with some awesome ASD kids. I think a world where difference is celebrated rather than shunned can’t come soon enough. ‘Twas blue for me today also! xx
Thanks Shari – so glad that you “get” it and good on you for wearing blue too!
Well said Kirsty, I have neighbours with two children on the spectrum and they are amazing, and so are their parents! I think we need to teach our children to be accepting of everyone! I forgot to post the pic of me wearing blue, before No.3 got dirt all over it! 🙂
Acceptance of all difference would be wonderful – why is it so hard though?
I’m personally glad it wasn’t wear white day as I would have been in trouble by lunchtime too (I had leftover nachos and got a little on my shirt – thank goodness I was wearing dark blue and I had my work access pass to cover it up!!!)
It is a wonderful dream, and I don’t think that it is too much to ask. A lot of awareness does need to be raised. I personally don’t have friends of family with autism, and I know I have a lot to learn. But, when I was a swimming teacher, I taught many wonderful children on the autism spectrum: I just wish I had been educated more on what their needs were and how to help them learn more effectively.
x Karen #teamIBOT
I wish more people thought the same way as you do Karen – more open minds would make this world a much nicer place!
It breaks my heart that funding for this is not sufficient, yet funding to support all the losers on the dole (not talking about the legitimate people here, just the ones who abuse the system) is aplenty. Surely these kids – the ones over 7 years old, too, need the funding more?! Great post Kirsty. I think a lot of people truly don’t get that it is a forever thing, not just a “give them some meds and they’ll be right” thing. I hope with all my might your dream comes true. xo
Thanks Aroha. Yes, a lot of people don’t realise that it is a lifelong thing and that most people with autism will need support throughout their whole lives, not just in childhood. I hope this message can get out to the policy makers who will actually be able to make a difference…
Hi Kirsty – sorry to chime in so late. I did see that Tuesday was World Autism Day and I really agree with your message around celebrating and accepting difference. I like to think in yin yang terms and I think that as much as autism (and a range of other ‘disabilities’)can create limitations in lives (in the societal view) they can also manifest tremendous gifts. In acknowledging the difficulties families living with Autism face, we should not discount the joys and achievements and we (society and personally) should provide the much-needed support for families for the long haul not just the short term…cheers..kathy
I couldn’t agree more Kathy! There are positives as a counterpoint to the negatives and I hope to share a bit of both throughout April to try to make people aware that autism is more than the broad stereotypes that we so often see portrayed. Thanks so much for sharing your thoughts!