I’m sure many of you seen the #autismselfieweekend trend on Twitter during the weekend. I believe it serves as some valuable lessons, for a number of reasons.
For those of you who didn’t, I’ll give you a quick summary. Anna Kennedy, an ‘Autism Ambassador’ (she’s not Autistic, however she does have 2 sons on the spectrum I believe). In theory, the idea was a good one in my view. In reality, how it was executed, it was an utter shambles.
For me, it crystallised the big issue surrounding Autism Advocacy; that is, that Autistic People are used as a prop by others who believe they are doing what is best for their children. While I don’t doubt they have good intentions, I believe they don’t know the importance of ensuring that Autistic Individuals lead the discussion, and decide what is discussed.
Something I was delighted to see, and honoured to play a part in, was watching the Autistic Community collectively rise up against the hashtag, and claim it for ourselves.
It’s disappointing that we need to fight against people who claim to support our best interests, yet fail to listen to the Autistic Community.
Do I believe parents have a role to play in Autism Advocacy? Yes, of course they do. What that role is though needs to be redefined. I believe the role of parents is not to lead the discussion, but to help facilitate it. I believe that parents should be saying “talk to the people at the centre. The people who know. The Autistic Community”, and ensuring that Autistic Individuals are kept at the centre of the discussions.
I don’t believe, however, that lambasting parents is the right way to go about it. Informing parents of the importance of ensuring Autistic Individuals decide how the conversation goes, and that we are the centre of the discussion.
Equally, however, I believe that a lot of parents are extremely rude and dismissive of Autistic Individuals opinions, especially if they do not align with their own. Parents need to understand that someone who disagrees with them online is not personally attacking your parenting skills, or saying you are a bad parent, we are simply trying to help. I think parents forget that Autistic Adults were once Autistic Children/teenagers, and we were once in the situation their son/daughter is in.
I think #autismselfieweekend showed that more and more Autistic Individuals are willing, ready and able to stand up for ourselves, and demand that we are a part of the conversation, and an integral part of this.
I hope that lessons are learnt from this, and that Charities, Individuals and parents are more acutely aware of the importance of centring the discussion of Autism around Autistic Individuals.