So, once again, Autism NI are in the headlines again, and not for a good reason. And, unsurprisingly, it is YET ANOTHER dispute over money.
This is the latest in a long, long line of gaffes by this charity that purports to represent and advocate for “the Autism Community in Northern Ireland”.
I’m going to take issue with that statement. As all of you are aware, I was the ambassador for Autism NI in the past. The reason I signed up for this role was because I wanted to be able to help Autistic folk in Northern Ireland, I wanted to help improve and change what has been a pretty shambolic state of affairs for Autistic folk, and Autistic Adults in particular who are effectively tossed out the door at 18 and left to fend for themselves by the system in Northern Ireland. I wanted to help give a voice to the Autistic Community, and allow us to have our voices heard. I thought being part of Autism NI would help me to do this.
Nope. Not even close to it. I quickly noticed that there seemed to be an almost obsessive goal of persuing fundraising events, at the expense of genuine efforts to improve people’s lives. Everything had to be profitable, everything had to be able to be part of a fundraising effort. It absolutely frustrated the life out of me.
I’m not completely oblivious to the fact that services need resources to run, but there needs to be a balance. Autism NI does have considerable resources at their disposal. They bring in hundreds of thousands of pounds a year in fundraising and grants and other areas. And where does it go? If I’m honest I’m not quite sure.
For decades, Autistic Adults have had to fight tooth and nail just for basic access to services in Northern Ireland. The info about Autistic Adults is scarce on the ground. I happened to look a few days ago at Autism NI’s website, and was looking at their section on Autistic Adults, and if I’m being honest I nearly threw my phone across the room in anger, when I was reading it.
Firstly, there was the allusion to “no known cure” as if we are some sort of tragic disease that we need to find a cure for. That sort of explains itself in terms of inaccuracy. For the purpose of clarity, Autistic Adults, as a whole, DO NOT WANT CURED. What we want is for society to start accepting us, and to stop trying to fix us or crowbar us into a world that we don’t always fit neatly into.
They also talk about how Autistic folk have a “lack of empathy”. I’m going to put this quite bluntly, that is utter horseshit and has been shown to be false over and over again, in fact the research now shows that in fact, Autistic folk feel MORE empathy than non Autistic folk. Yet Northern Ireland’s Autism Charity is still pushing the line we are emotionless robots who don’t understand human emotion. This is highly, highly frustrating.
Then there’s the constant use of person-first language, something the Autistic community really objects to for a number of reasons, the promotion of ABA as an Autism “therapy”, the support of the Light It Up Blue Campaign (full disclosure, I got suckered into that one before I fully understood what the colour blue represented), and I could go on all day but I think you get the point here.
Coming back to my main point. This group doesn’t represent Autistic Adults. This group doesn’t even seem to understand Autistic Adults. In fact, their own chairman, David Heatley, told me directly that Autistic Individuals “do harm” to Autism NI’s campaigns, and I think that tells you all you need to know about their attitude to Autisic Adults. We’re a liability to them.
I don’t see them trying to work with Autistic Adults. I don’t see them trying to engage with Autistic-led groups. I don’t see them making the effort to understand the issues Autistic Adults face in every day life. I don’t see ANYTHING, apart from a small blurb on their site with woefully out of date information on Autistic Adults.
Now, this is going to come across as a huge rant. And supporters of Autism NI, and I imagine the organisation itself, will be saying I’m just a disgruntled ex-volunteer.
And you know what, they are absolutely right. I am disgruntled. No, I’m beyond that, I’m absolutely hacked off, because a group that has the resources to really make a difference, refuses to do so. A group that has the influence to start forcing real change, won’t use that influence for anything more than a few “Autism Awareness” events.
And above all else, I’m hurt. I’m hurt that a group that professes to want to support me, and the thousands of others like me, the Autistic Community, that they still don’t involve us, they refuse to give us an opportunity to speak up. They consider us liabilities. Threats. Hindrances. How can they speak for us, when they don’t even respect us?
I’ll sign off with this.
I’ve been part of Autistic UK for just over 2 months. In those 2 months, I’ve felt valued, supported and, most importantly, that I’m an important part of the team. And I also feel I’ve accomplished more in those 2 months than I accomplished over the 4 years I spent supporting Autism NI.