Autism Acceptance Month is Coming!

April is Autism Acceptance Month! 

This will be the second April I'll experience as an 'officially' autistic adult! For the last decade and a bit, we Bolgies have been advocating for autism acceptance in today's society. When our daughter Alyssa became the first autistic Little Telethon Star, we felt like we were starting to get somewhere. There had been a dialogue about autism that had rippled through WA. Our family formed Alyssa's Autism Acceptance Project around the breakfast table one morning, shortly after Telethon 2015 came to a close.

We have been a part of many autism events over the years, and we continue to promote Autism Acceptance Month every April. World Autism Day is on April 2nd every year as well, a fact that our family and friends will constantly be reminded of. We say autism acceptance, and not awareness, because there is plenty of autism awareness in the world. Ask anyone and they would have at least heard the word, or even be related to someone with autism. Acceptance of autism is another story.

So much is done on behalf of the autistic community, without any (or in some cases, limited) input from an autistic person. Before Rhona or I were diagnosed, we advocated for our two autistic kids as best we could. We were always very aware that our children were the experts of the autistic experience. They both were non-verbal until the ages of five or six, so we had to learn how to listen to them. They were communicating...just without words, like many other autistic people.

As we navigated life with kids on the autism spectrum, we sought out the autistic voice. When we attended seminars or conferences, we were drawn to talks or presentations done by autistic people. Our first realisation of how important this was came at the first APAC in Sydney 2007, when we attended a panel session that featured four teenagers with Asperger's syndrome. They were recalling their experiences during school, and hearing their stories gave us more insight into what our children were going through than the medical experts we'd been listening to.

We learnt over the years that some images and motifs closely associated with autism were, in fact, derided by the autistic community at large. But as Rhones is fond of saying, "When you know better, you do better," so we have taken many things on board as we've continued on our journey together.

I stumbled across a fabulous post about Autism Acceptance Month on Facebook from a Tumblr page called Endangered Bodies NYC. The following words are lifted directly from that website:

PSA to our followers this Autism Acceptance Month:

• Use Autism **Acceptance** Month (as opposed to Autism Awareness Month). 
• NO “light it up blue” or puzzle pieces. Google “Autism Speaks hate group” to learn more. 
• Use red or gold instead, which are colors supported by the autistic community. 
• Use identity-first language (most autistic people prefer “autistic” instead of “person with autism”), but don’t police the language of someone who prefers to be called a person with autism. 
• NO scare terms like “suffering with autism” or “afflicted with autism.” 
• Avoid functioning labels like “high functioning” or “low functioning.” 
• If autistic voices are not at the center of your efforts, you’re doing it wrong. 
• When in doubt, ASK AN AUTISTIC PERSON. 
• To learn more about autism, visit autistic-run organizations like the Autistic Self Advocacy Network (ASAN) and Autism Women’s Network (AWN). 

We had to learn most of these things ourselves through experience. We participated in Light It Up Blue occasions until we learnt of its negative connotations. The puzzle piece motif has long gone from many logos involved with autism. We have constantly requested an autistic voice or input from the autistic community when any initiative or idea is planned to benefit people on the spectrum. 

Looking at the points on this list, we would always seek advice from either our own kids or autistic adults we had met along the way. We asked both of our kids if they preferred being called a 'person with autism' or an 'autistic person'. The argument being with some PC folk is that you see the person first, and the disability later. This person-first language is being taught in many universities by non-autistic people. Our kids (and now us) prefer being called autistic, as we are proud of our autism. We also feel that our autism is a big part of who we are. We wouldn't be the people we are without it. Our brains think differently and we tend to process sensory input in a diverse manner, compared to both neurotypicals and other autistic people. 

The following graphic shows our feelings on the matter quite clearly. Rhona uses this is in The AAA Project PDs and presentations too.

We don't just carry our autism around with us, and pack it away at night. It's an essential part of our being. But, there are some who prefer being called a 'person with autism'. It comes down to personal choice. 

Our main goal is to help those on the autism spectrum be their own advocate. We want to make sure that educators, parents and other members of society are listening to the autistic voice. Another saying Rhona is fond of is: "Stop talking about us, and start talking to us." I think that sums things up pretty well.

This April, why not take some time to learn about autism? Do you know someone with autism? If you know me, I'm happy to answer any questions you might have. As Rhona was diagnosed in mid 2017, and myself that December, we are fairly new to being 'officially' autistic. Some scoff at the validity of an adult diagnosis, but it has been hugely invaluable to both of us. We now give ourselves permission to de-stress from certain social situations, rather than just keep on pushing through. We recognise that we may need help in some environments and we understand why we react in a particular way.

Speaking for myself, I forget every now and then about my diagnosis. When I remember, "oh yeah, I'm autistic", I feel hugely grateful. I've embraced my autism but I'm still getting used to being actually autistic. So, in closing, I'll leave you with The AAA Project motto: Listen. Respect. Accept.

RIP Keith Flint

The world discovered that The Prodigy's Keith Flint passed away a few hours ago. He was found dead in his home at the age of 49. Media reported that his death was not suspicious. That usually means one of two things: suicide or a drug overdose. I was hoping for something else. Rhones suggested that it could have been a heart attack.

I'm not the biggest Prodigy fan in the world. I only have a couple of their songs on JJJ compilations and the Breathe CD single. I've never seen them live either. In fact, I remember walking out of the 2009 Big Day Out in Perth just as their set was kicking off. 

But when fellow band member Liam Howlett revealed in an Instagram post that Keith had indeed taken his own life, it really hit me. A huge sense of grief just welled up in me, and I'm not sure what really triggered it.

I've always found the way we react to celebrity deaths as a society very fascinating. Someone we have never met or spoken with can be so important to our lives that they leave a gap when they pass. There are those who will deride such actions, and offer a debate of whether a famous person's death deserves more attention or mourning than children dying from diseases in a third world country or victims of another shooting massacre in the USA. 

I think that one of the reasons I got so moved by Liam's words about Keith was that he was describing how he felt. Suicide leaves behind a lot an unanswered questions. The whys and hows aside, one thing that someone who has lost a loved one to suicide might ask themselves is 'what could I have done to prevent this?'.

The Prodigy recently toured Australia and New Zealand. Their last show was in Auckland on the 5th of February this year. Keith had only been home for a month or so. Being in a band myself, if I woke up to the news that one of my bandmates had taken their life, it would devastate me. In addition to sharing a stage, you spend a lot of time together. Sometimes you travel to a gig together, and there's breaks between sets. You get to know each other. You find out what's happening in each other's lives. I like to think that I am the kind of person that people can confide in. I usually don't have an issue talking about what someone is going through, and I'm happy to be the shoulder that gets cried on. It's so important to have someone you can talk to if you're experiencing depression or anxiety or both.

Having lost my own mother to suicide, I'm probably a little more sensitive and empathetic towards friends and families of those who have taken their own lives. You go through a lot of emotions. I struggled to deal with my mum's death. Well, to be honest, I didn't really try to. I was so determined not to let it affect me that it did. I became emotionally stunted. I overreacted (or under-reacted) to certain situations. Being diagnosed with autism a little over a year ago has informed me of how I handled some issues as I grew up as well. We're all just little pieces held together with sticky tape and string after all.

Bottom line, don't be afraid to seek help. It's one of the most important things you could ever do to move forward out of the hole of depression and anxiety.