I want to share a somewhat controversial opinion today, for World Autism Awareness Day (WAAD).
You may not agree with it and that’s okay. You may find it personally challenging to accept and I get that too. To give you some perspective, I’ve been an “autism parent” for 10 years now (in fact, last Friday marked 10 years since diagnosis day). It’s taken me 10 years to get to this point, so I don’t expect you to be fully on board, especially if you are new to autism.
However, please hear me out and consider my words. I truly believe the path to autism acceptance (not just awareness or understanding but full and genuine acceptance) lies with us. If we, as parents, cannot accept autism and fully accept our autistic kids, there is no way anyone else will, let alone society as a whole.
It’s harsh, but it’s true. Think about it.
If we continue to talk about seeking a cure; if we keep focusing on identifying causes; if we keep on trying to change or normalise our kids’ behaviour; if we continue to ignore actually autistic voices; if we keep sharing only the negatives of our situations – we are not practising acceptance.
In fact, all we are doing is perpetuating the stigma and the stereotypes that continue to misrepresent autism.
It’s important we have a voice as parents, no doubt. But, we need to be careful our voices, as parents and carers, don’t override the voices of our kids or the autistic adults who are ready and willing to lead the way. It’s important that the stories we tell honour our kids and grant them the privacy and respect they deserve as individuals. It’s important we share the positives, as well as the negatives, of living with autism.
It’s vital that we understand this is not about us – its first and foremost about our kids. We need to learn to put our expectations to one side and accept the reality of the child in front of us. That’s the first step in truly accepting autism.
We need to lead the way, modelling action, language and behaviours to honour, include and value our kids for who they are and what they bring to our lives. Only then will others follow our lead and begin to accept autism.
Here are 8 ways we can lead the way and model autism acceptance for our communities
Stop focusing on autism causes and cures. Maybe, if we, as parents, were less interested in the “why” and the “how” of autism, research and funding could be funnelled into strategies to make the world more autism friendly. Will identifying why your child developed autism change anything for them? No, it won’t. It might help you, by giving you a reason, but it’s not going to help them, in the here and now. Instead, focus on how you can make the world a better place for them.
Don’t be a martyr parent. It’s a relief to vent about the difficulties of our situations as autism parents with others who get it. However, it’s important to not get trapped in a martyr parent mindset where we solely share negative experiences to gain sympathy for ourselves. We are not saints and our kids are not burdens. This is the stuff of tabloid news and tell-all parenting memoirs. Sensationalist and wrong. This is not the way to accept our kids or push for autism acceptance in the community.
Show our kids respect in order for others to follow. We need to respect our kids’ rights as individuals and show care in how we talk about them and the details we share about them. Before sharing details of their lives with others, try to see how your child would feel if they could hear you or read your words. Would they be hurt or offended? Would their individual rights be violated? We need to lead by example and show them the respect they truly deserve, so others do the same.
Be mindful of our language when talking about autism. Language matters and as parents to autistic kids, we’re setting the tone for how the rest of the community talks about autism. Avoid words like “suffer”, “disorder” and “obsession” and use more positive wording, like “live with”, “condition” and “hyper focus” instead. The person you are speaking to will more than likely use your wording to talk to others. It’s a step forward in spreading acceptance and countering the negatives surrounding autism.
On a related note: Person first language (person with autism) is favoured in the health and education sectors but did you know most autistic adults prefer identity first language (autistic person)? We should always ask how someone wishes to identify themselves and use their preferred language, rather than impose our language on them.
Open our minds and listen to actually autistic voices. Following on from my point above, it’s important for us to listen to autistic adults. I admit this can be challenging to begin with. It’s not easy to learn just how wrong we’ve been in our thinking or how we may have unintentionally infringed on the rights of our kids. However, we can learn so much from those who’ve been in our kids’ shoes. We need to put our own feelings to the side and take note of the lived experience of autistic adults.
There are many autistic advocates but, as a starting point, check out Respectfully Connected, Neurodivergent Rebel, Michelle Sutton, Autistic Hoya, John Elder Robison and Temple Grandin.
Talk about the everyday strengths of autism. Most news stories and pop culture references concentrate on the stereotypical negatives of autism, or they feature genius savants. As parents, sharing the everyday strengths of our kids can help counter these narratives and foster acceptance. Talk about them with your child’s school and see if they can capitalise on their strengths. Talk to your neighbours, friends and family and share your pride in their achievements.
Don’t try to change your kids. By all means, help your kids better cope in a world that’s not made for their needs. Undertake occupational therapy to help them self-regulate their sensory needs. Take them to psychology to assist them in managing their anxiety. However, be careful you are not trying to change them and who they really are. Understand their unique needs but don’t try to impose your own expectations on them. That is not acceptance.
Accept our kids for who they are. It can take time to truly accept our kids and their unique quirks, demands, preferences and behaviours. When you receive a diagnosis for your child, it’s hard to let go of the expectations, hopes and dreams you originally had as a parent. But, you have to let go of these so you can appreciate the child you have and accept them for who they are, not who you expected them to be.
Celebrate, love and accept your child and encourage everyone around you to do the same x
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I really appreciate this article Kirsty! In particular,talking about the everyday strengths os essential. This will progress acceptance and is definitely a goal we should all hold close.
Thanks for this Simone! It seems to be either one extreme or the other when it comes to discussing autism. It’s time to talk about the everyday strengths so people start seeing autism as a true spectrum of ability.
One more thing – do not speak for us or about us unless you are absolutely committed to use our language, our words and our definitions of what autism is.
Thanks for this Henric. As a NT parent I’m trying my best to respect the autistic community and value this input as I continue to learn.
Love all of this. Of course we’re none of us perfect and language mistakes can be easily made, but it’s a question of habit and the right mindset, I agree.
I know I’m not perfect in this either but I’m trying so hard to do the right things for my kids and the greater community they are a part of!
Wow. So true and as usual you have put your case forward with equanimity and care. This was an excellent read.
Really interesting too for me, the educator, to see the way in which adults with autism may wish to be named.
You are reminding me not to keep wondering about ‘how I got my cancer’ as it makes no difference now. Letting go is hard but I know I need to do that.
Thank you for linking up for #lifethisweek 14/52. Next week’s optional prompt is “Share Your Snaps” an every 5 week prompt in 2018. Denyse.
It’s natural human instinct to want to understand why and how things happen. But, in the scheme of things, it’s less important to know those things than to move forward and work with what you have to deal with. It’s not easy but it makes things easier in the end x