I must confess I’m always a little conflicted on World Autism Awareness Day and throughout the month of April as a light is shone on autism across the world.
On the one hand I rejoice in the extra attention and the focus that autism gets today and throughout April. As a parent it gives me hope that perhaps one day my kids will live in a world more understanding and tolerant of their unique quirks and behaviours.
On the other hand, I really dislike the fact there has to be a gazetted awareness day at all. I despair that the community will ever fully embrace my children for the wonderful people they are, rather than focus on those parts of them that appear to be different or challenging to others.
The autism community themselves are split on the meaning and value of world autism awareness day and autism awareness month as a whole. Some fully support the cause while others just wish it would go away.
For parents and carers of those on the spectrum it gives us the opportunity to share our stories and experiences. It provides an outlet for us, as members of the autism community, to talk about all aspects of living with someone with autism. This is a valid point of view although it does come from those who do not have the condition themselves.
April can forcibly remind us that acceptance of autism in our community is a still long way away. It causes us to ask why we are still trying to raise awareness when we should be focusing on developing acceptance instead. This post by Michelle Sutton beautifully asks why can’t we accept autism already:
Autistic people are here with us in our shared society. They are offering themselves unreservedly and in all their diversity and beauty. They are asking us to look at them and receive them as adequate, valid and suitable, and that we do that without condition or expectation that they will change to suit our whims. It is not a big thing they are asking. Just acceptance. Just exactly what you and I are privileged to receive already.
For people on the spectrum, April can be a very painful and triggering time of the year. ThAutcast posted a poignant insight into what April has come to mean for many who dread the negative stories and the focus on the challenges of autism that are frequently highlighted at this time of year:
The whole awareness issue is also coloured by the issue of colour. You may have seen posts recently about “light it up blue for autism” which has been the mantra for autism awareness for a few years now. Due to the association of “light it up blue” with controversial US autism advocacy organisation, Autism Speaks, ASPECT in Australia has decided to go with a #coloursforautism theme instead. This is great but I think it’s had the unintended consequence of confusing the message to the wider community about autism awareness and acceptance.
In the interest of trying to practically promote autism acceptance I want to share some ways you can do this every single day. We shouldn’t just rely on a set day or month to shed light on autism – it should be something that is talked about and encouraged every single day.
For anyone out there interested in knowing what they could be doing everyday (not just in April) to be more accepting and supportive of people with autism and their families, here’s some ways you can help.
5 ways to show autism acceptance everyday (not just in April)
1. Don’t judge. If you see a parent struggling with their child in the aisle of the supermarket, don’t make an instant judgement that the child is naughty or the parent incapable of managing them. They could indeed be acting up but they could also be overwhelmed by sensory overload – the lights might be too bright, the ambient noise too loud, the floor too cold, the crowd of people too much. You don’t get the whole picture just by watching one isolated event. So don’t judge a book by it’s cover.
2. Be kind. The smallest overture of kindness can go a long way to making an overwhelmed family feel so much better. I remember taking my kids to a cafe one afternoon and my son went into a full meltdown. Instead of viewing us as a loud inconvenience in their cafe, the lovely owners treated us all with kindness and respect. I remember being so close to tears that day with both frustration and also gratitude at their unexpected kindness. That experience encouraged us to try more outings and resulted in a long term and welcome date with the cafe every week since. Do not underestimate the power of a simple act of kindness. It can mean so much more than you could ever imagine.
3. Ask questions. If you strike up a conversation with someone and they mention their child or loved one is on the spectrum, don’t be afraid to ask intelligent questions and continue the conversation. By asking questions you learn a little more about how that person is affected and they have the chance to share their experiences with you. Talking openly and honestly about autism is the best way to develop acceptance – the more you know, the more you understand and the more you come to accept it. Just don’t assume you know everything about autism after one conversation – I have lived with autism for over 10 years now and I’m still learning!
4. Be respectful. If a parent advises you not to approach their child in a particular way (e.g. don’t surprise them or don’t touch them) then don’t. There is very possibly a reason for their advice to you. They know their child best and even if you think you know better, you don’t. Be respectful to the parent but also to the child (this should just be common courtesy really). Also, in line with the advice in point 3, don’t assume you know everything about autism with limited experience – there is a famous quote that says “If you’ve met one person with autism, you’ve met one person with autism,” Dr. Stephen Shore. This is spot on. Be respectful of everyone.
5. Embrace difference (and teach your kids to embrace difference too). In the end autism acceptance will only truly be a reality when everyone embraces difference in everyone. We should be able to accept that some people will have stims (like my son and his “swingy things”) and that it is a normal part of their day to spend time stimming to regain sensory control. We should have the patience to enter into a conversation where the other person might talk for 10 minutes straight on the benefits of different payphones. It should be normal to communicate in a variety of ways, including with augmented assistive devices with those who are non-verbal. It should be accepted that everyone has their own strengths, interests, desires and goals.
Autism is not about being less or being more. It’s a way of thinking that is different, unique and valuable.
In the end we should be accepting of everyone – including those on the autism spectrum.
Make your actions count – promote acceptance of everyone, everyday.
Would you like more support as a special needs parent?
Subscribe to Positive Special Needs Parenting to receive updates, advice and support from someone who's been there (and is still very much there!)
This is a beautiful post. I like every point you have made – especially about being non-judgemental. X
Some really common-sense tips here that would really help if you’ve no experience or limited experience with kids on the spectrum. Kindness is so important xx
Great post Kirsty! I so hope that people will learn to embrace difference. Difference is good! I’m the mum of an aspie boy (high functioning on the spectrum) who has a university degree and is trying to get a job. No success since he graduated in July last year. He is smart, polite, reliable, well groomed and would work hard at his job. Do the people that interview him see this or do they just see ‘difference’ and run a mile? As his mum I can’t help but worry for his future in a world that doesn’t understand that we don’t all need to be the same! Difference is refreshing!
This is beautiful. So well written and so thorough and inclusive. You are a wonderful advocate. Awesome mum.
Leanne @ Deep Fried Fruit
Thanks for your sharing in this post and for giving me some guidance about how to be respectful and accepting of autism every day, not just in April. I especially like your point about not judging when you see a child having a melt-down.
My son shares a classroom with two children on the spectrum. His teacher has the most wonderful ability to teach the children in his class to be kind and respectful and they kids are ALL great friends who understand not to judge but to embrace each others differences. Thanks for sharing this lovely post.
Great post, I think we can all be a little kinder and a lot more understanding. Months like April are important to those of us who don’t have kids on the spectrum. We need to be educated so we can understand what these kids and their families go through.
Great post Kirsty and I am with you in having mixed thoughts about the awareness day. I think it’s important to educate people about the spectrum but shining a massive spotlight on it I imagine would make people with a diagnosis feel a little uncomfortable..
your advice is lovely and helpful, I don’t have much experience with children with Autism. I think most of the points you make could be applied to everyone in society with most kids though and so are valuable in many ways. Thank you
Thanks for the insightful post. I had never thought of awareness days in that way but I can totally see how it could be overwhelming.
Well said. I hope one day, we can all celebrate our beautiful quirks, because humanity would die without a variety of thinkers. Our society needs a lot of different types of brains to function and to be frank, not a lot of interesting stuff comes from the middle of the bell curve x
Thanks Kirsty – great insight into some of the challenges of awareness raising, especially for people who might already be feeling different. I liked your comment ‘acceptance will only truly be a reality when everyone embraces difference in everyone’ – very true.
Love this Kirsty if only more people understood and were more patient before judging
Very insightful post, Kirsty. I understand that this month would trigger many conflicting feelings for you and your family. I think the most important thing we can teach out children (and ourselves) i to embrace and respect differences. x
Such a beautifully written post. Bravo. Dont judge, be kind, ask questions, be respectful, embrace difference. I couldn’t agree more. Thank you for sharing.
Blown away by both your #spectrumsunday posts this week – I simply couldn’t agree more. xxx