The Dark Side Of FB ‘Support’ Groups.

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The Dark Side of Advocacy – Bill Appleton

I’m a member of two FB Autism Support groups. One UK based, secret, administrated 24/7 by a dedicated worldwide team, and the other one.

The other one doesn’t have a great reputation in the Autistic Community, being known as “Hell Group” by many, “The Big Group” by some.  I call it The Dark Side. It’s not a nice place if you’re an Autistic Adult with an opinion, an argument or experience that doesn’t match the expectations of the “Autism Community”.  Inactive admins have left fertile ground for stridency, mawkish, self-serving pity parties, bullying and the promotion of Snake Oil treatments and therapies to the desperate and uneducated.

The underlying feeling gained from commenting or posting there, is that being able to articulate myself in prose means that I am too “High Functioning” to understand anything at all about Autism in the eyes of many of those who refer to their children as “Low Functioning”. If you point out the flaws in a bogus study you “can’t understand the report” because you “have autism”.  Objections to condescension and patronisation result in being told that I only have that “opinion” because of my “communication difficulties”. Yeah, right.

There are trolls and bullies who delight in baiting and double-teaming Autistic Adults to meltdown, or deliberately provoking drama for the sake of it, by attacking and gas-lighting. Given the opportunity they will rootle through your profile and go on to attack your children if they have an FB page – I’ve seen it happen to one of my friends who had to resort to Law Enforcement.  An impassioned post of mine about bullying was taken up by other Autistic Adults and bumped for days and days, during which things fell slightly quieter, before a remarkably vicious and vindictive attempt at an organised mass backlash on the part of one particularly nasty known troll, operating under her third profile that month.

In this group, Autistic Adults are spoken down to, condescended to, patronised, insulted and belittled almost constantly, for daring to speak up and stand our ground for what we feel is right.

So why do we go there?

Well, as an Autistic Parent of two Autistic kids, I like to connect with others in my situation, to swap tips, get some advice on a specific issue, debate developments in the world of “autism awareness” and play with my Autistic friends (fast-moving, wide ranging banter and wicked meme wars). Bonds of friendship are made strongest by shared adversity, so effectively whenever we meet up over there we get to strengthen the bonds, lol.  I also go there to give what support I can, where I am able.

I’ll “like” the myriad “Can I get some likes for my birthday girl / boy” posts. I’ll “like” or occasionally comment on achievement posts. When I find a post that resonates with my own experiences or covers a problem I’m well-versed in, I will offer advice.  I’ll send a voodoo hug to a struggling parent, I’ll say helpful or encouraging things when I am able to do so with sincerity, and I’ll jump on quack cures and Charlatans, with inconvenient facts. I’ll also endeavour to educate regarding the facts of some treatments and issues, and spread the work of excellent Autistic Advocates and Bloggers.

I try hard to maintain a sympathetic outlook of the “autism community”, try not to examine too closely the many issues with the readily apparent Us & Them (“Them” being us) dichotomy of thought, and I try to shrug off the condescension. Just like the other Autistic Adults there do.

We do it ultimately for children. For the sake of the futures of our own monsters, and for kiddos that we’ll likely never meet or know, because we understand that one day they will be us, as once we were them. We know what the struggles they face feel like, and the prejudice they will have to endure.  The way their parents treat us now is the way their social groups will treat them, and they need to know that they are not as alone as they feel.

There are more reasons, but it boils down to one, simple fact. The reason we go there, to waste spoons on the undeserving, to run the gauntlet of ridicule and bullying, to ride the waves of condescension and disdain and spend time we should be sleeping having pointless arguments…. Is because we have to.  The nature of the “awareness” being constantly touted today benefits only people who are making money out of the Autism Market, and does nothing toward helping, empowering or accepting Autistic Adults or Children for who they are, and until that changes many of us really don’t feel we have a choice.
Bill Appleton

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Comments

  1. Kate Gladstone  October 30, 2015

    So … What’s the URL of that “Hell Group/Big Group/Dark Side”? Sons of the reasons you give make me want to visit, too, from time to time …

    reply
  2. Kate Gladstone  October 30, 2015

    So, what’s the URL of that “Hell”? I MAY want to visit, as you do …

    reply
    • A Cranky Spider  October 31, 2015

      i want to know what it is so I can avoid it

      reply
  3. Anna  October 31, 2015

    Some of ‘Autism Mums’ actually sought out the opinions of the adult autistic community and not only listens but considered and incorporated your thoughts into our care plans for our children. Some of us looked only all the cure seeking parents with pity and hope that they one day ‘get it’. I know there are children being drugged and bullied in ‘behavioral modification’ practices that are worse that anything we’ve done animals/slaves in the whole last century – it breaks my heart. I understand that there’s a huge under-current of disrespect for autistic adults generated primarily from care-givers of the very young, for that I am truly deeply sorry.

    reply
    • Kate Gladstone  October 31, 2015

      Whenever I see or hear “caregiver,” I remember that the oldest meaning of the word “care” is “pain, sorrow” …

      reply
  4. Kate Gladstone  October 31, 2015

    Whenever I see or hear the word “caregiver,” I remember that the oldest meanings of the word “care” are “pain/trouble/sorrow” …

    reply

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