World Autism Awareness Day was on April 2nd. It’s come and gone, and you wouldn’t have known it even existed in New Zealand. I searched the following sites, for either written or video content: NZ Herald, Stuff.co.nz, Scoop.co.nz, as well as TV3 News and TVNZ. Not a single mention. In fact, in performing a search for “autism” on many of those sites, the most recent stories that are sourced, are ones about the shooter in the USA. Which is to say, one of the recent prime examples why we need people to better understand autism – in the face of fear and ignorance – is what comes up instead of any piece promoting autism awareness.
What a lost opportunity. And frankly, what an embarrassment. But embarrassment for whom..?
I’m going to point a finger at the most well-known autism charity in New Zealand, the very same charity that prides itself on being the “go-to” source for the media for perspectives on autism stories. The same charity whose name appears in the stories and news items and radio interviews from previous years for autism awareness days. So what happened in 2013, and was it just some major anomaly?
I don’t want to be mean to Autism NZ; they’re a charity, right? And god knows I don’t want to alienate myself or my blog from the biggest autism charity in my little country. But here’s what I’ve seen, heard and experienced of Autism NZ, since my son’s diagnosis brought them to my attention:
Autism New Zealand runs a help line. My friend with an autistic child once rung the help line for advice about helping their child, and was told by the person who answered that she wasn’t meant to officially say it but vaccines were the major cause of autism. How many people had this person being “helping” in this way over the years? When I personally sought help from Autism NZ because of struggles I’d been having with a government agency, they promised in person to have a talk to the agency on my behalf, and never did, even when I enquired into progress it was never actioned. There was only one service I ever received from Autism NZ, which was taking part in a preschooler playgroup. Half way through the first term of the playgroup, internal frictions caused the group running the event to splinter off from Autism NZ, so the service was ultimately run and funded by that other charity.
I won’t go into the sordid history of public constitutional disputes that made headlines for months, or the funding lost to other agencies because the government thought other agencies would better provide services to the public than Autism NZ could or had. The details of all that are complex and messy to say the least. There were also cries of foul play over how Autism NZ presented itself and the issues to the media during that time, but that’s to be expected I guess.
But what happened more recently that could have caused Autism NZ to seemingly forget World Autism Awareness Day? Oh no wait, they do mention it on their Facebook page, where they said this, and only this: “Happy World Autism Awareness Day to everyone. Don’t forget to help Awareness by sharing this status and getting people to donate to Autism New Zealand.” That’s right, no substantive message about autism itself, essentially just a self-promoting call for funds. Which is exactly in keeping with the tone of the charity of late:
Last year they went from a voluntary membership donation, to a compulsory membership fee. I was very upset at the new fee and the way it was introduced, and at the time I wrote an extensive post that I never published, entitled: “Autism NZ’s new membership fee; at a cost beyond money?” Wherein I also lamented the lack of publicly available information about how Autism NZ spends its funds, compared to other disability charities which are very open about their expenditure. I am now contemplating whether I should retroactively publish that post. The reason I didn’t at the time was the same reason I was reluctant to write this post: Who wants to be seen as bullying an autism charity? They do so much for people like my son, right? Right..?
Autism NZ did manage one other Facebook comment leading up to World Autism Awareness Day, requesting schools to volunteer to take part in Multicoloured Mayhem Day. Yet I haven’t seen a single story about any schools or businesses that took part in it. Not one. I don’t know of any that did either. I’m sure someone somewhere did, but you wouldn’t know it.
OK, so if their own Facebook page is a bit of a bust, surely they brought it to everyone’s attention on their own website? No. See for yourself. Try to even find mention of World Autism Awareness Day for this year. The most recent news story is about their book sale in December. (I do wonder if the fact that the story before that is “new board members announced” hints at what’s gone wrong?) You know what you will find though? On their “what we do” page, they state their top role is to “Raise awareness of autism spectrum disorders.” Um, oops? (As much hatred as Autism Speaks gets over in the USA, at least they loudly acknowledge that special day of the year.)
I have another issue I want to raise about how Autism NZ has recently conducted itself. It decided to rebrand itself, it had the chance to move away from the puzzle piece so many people in the international autism community find offensive and belittling. The puzzle piece that has led to people pointing out that they are not something to be solved, they are not incomplete, they are not some sort of puzzle. It is very easy to find pieces written about this concern, and its all over Facebook at this time of month too. And yet Autism NZ’s new logo is a green puzzle piece representing a human, within an “A” shape. I don’t understand how they can be so disconnected from these issues and concerns, to intentionally adopt something considered so upsetting by so many in their community?
There are quite a few autism charities and general disability charities here in New Zealand, but Autism NZ carries the highest profile and gets the most media attention for autism issues (at least in the past), so I feel like they need to serve our community well. I feel like the least we can expect from them each year is to grab the headlines on World Autism Awareness Day, when they have the right to make national and local news listen and share a message. A day when autism has an excuse to be celebrated, or at least better understood, instead of only coming up in the context of looters, hackers and murderers (each example should ring a loud bell). I see it as a huge lost opportunity, and I feel let down. I really do. I want to be nice, and understanding, and give the benefit of the doubt, but what happened, what is happening? I know Autism NZ has helped a lot of families (well they keep suggesting they do in their newsletters), but the silence on World Autism Awareness Day was deafening. And so I end on this simple perplexing question:
Where was Autism NZ on World Autism Awareness Day?