Are You An Autism Advocate Bully?

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I have a tendency to be a little naive. Sometimes it works in my favor. Sometimes it leaves me feeling ridiculous…even still, I always enter a situation assuming the best of people. When I joined the autism community, I did just that. I assumed it was full of other people like me, who needed comradeship and simply wanted what was best for their family. I believed this was one great big “kumbaya” fest of love and support. Simply put….I was stupid.

Like most of my bubbles, that one got burst. What I discovered is, there are just as many hateful, arrogant, mean-spirited people in the autism community, as anywhere else. In fact, for me, it feels worse here…..because HERE is where openness and acceptance should be abundant. People shouldn’t be afraid to share here. HERE is where bio-med and ABA supporters, vaxers and anti-vaxers should come together and say, “We really just want what’s best for ALL of us….and what’s best for EACH of us, isn’t the same thing.” Here is where respect should be rampant…..and yet HERE is where it’s not.

As an adult with Aspergers, friendships have always been difficult to come by and maintain. It’s been one of THE most painful aspects of this life I’m navigating. I can count far more people I have lost than kept….and I mean, genuinely, kept. I got over wanting to be one of the “cool kids” (And don’t kid yourself…this doesn’t just happen in childhood). It was stressful trying to figure out the dynamics. I would say and do foolish things, because I thought I was SUPPOSED to. I was mimicking. I was finding myself and losing myself constantly. It was torture….I left it far behind, and truly allowed ME to discover……me. It took 30 years for me to be comfortable with who I am…and it’s a struggle still on some good days. You see, autism for an adult….isn’t any less difficult. Those of us on the (for lack of better words) “high functioning” end have learned how to mask it, in many ways. We HAVE to….because trust me, even in the autism community, we’re considered weird. Plain. And. Simple.

So when an adult with autism is newly diagnosed, there is such a rush of emotions and memories and stimming and perseveration and fear and relief….and…and…and……it’s so much to process. We are so beside ourselves to, finally, have a reason for everything. Just…”Thank you, God. There’s a REASON.” We have a lot to process. We need support. We need ears to listen. We need shoulders to cry on. We need friends. We need love.

We need wine.

What we DON’T need is anybody forcing us BACK into a life of covering up who we are, because our truth makes them uneasy. What we DON’T need is someone telling us how to handle our own process. What we DON’T need are other autistic people telling us that we need to shut our mouths. Call it life. Call it a journey. Call it whatever you want…..it’s not ANYBODY’S business to tell another how to go through it.

If you’re an autism advocate bully, stop it. Just…stop it. This mess is hard enough, without us turning on each other. Show adults with autism the same grace and understanding you’ll want someone to show your child when they grow up….because believe me, they’re gonna need it.

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About Mutha Lovin' Autism

My name is Erin. I am a mother of four children. I, my son and my daughter have Aspergers. My oldest has sensory processing disorder and my youngest has "classic autism". We are a homeschooling family who enjoys sharing our lives with others. I want to bring hope, humor and honesty to this community. Together we can make a difference.

6 responses »

  1. Thank you Erin, it’s about time someone spoke out on this issue. The unfortunate reality is this kind of behavior is not unique to the autism community, it is all over the disability community 😦 You are right, just like a parent learning about their child’s disability, it must be difficult to process for a person learning about their own disability. I think this is important to point out because just like on the parent’s journey there is an element of ‘grieving’ (for lack of a better word and yes, we all grieve things OTHER than death) and a person newly diagnosed needs to be given the opportunity to learn from others, not be shut back into the loneliness and misunderstanding of where they came from. It all boils down to people taking care of THEMSELVES, accepting OTHERS and trying to make a DIFFERENCE.

    Thank you so much for your post 🙂

  2. As a parent of an almost 18 year old with Moderate Autism I could not agree more. I have been called every name under the sun for some of the choices I have made to make my son’s life better. I will agree to disagree with other parents, I respect their choices and I try very hard to encourage newer parents to this community. None of us asked for our children to have Autism, none of us planned to go through all we endure but we all love our children above anything else. I became a teacher, advocate and mentor to assist others in this journey that is full of laughter, tears and the unknown. Be well and support each other, do not condemn others for their choices.

  3. Amen Erin!!! What we DON’T need are cupcakes!!! We do need some wine and some chocolate too! 😉 Thankful that I have “met: you thru our kiddos’ journeys ❤

  4. You took the words right out of my mouth!! I’ve often talked to friends about my disappointment in not having a “kumbaya” experience, of us all coming together. I do my vlog but try to steer away from all the hot button issues, groups, people, etc.

  5. “It took 30 years for me to be comfortable with who I am” Congrats! The earlier the better. You caught on way quicker than I did. I have something, not autism. Same deal with “coming out” or not. The experience is probably the same for all stigmatized behaviors. Must we create a Stonewall Moment like the LGBT community to start the breakout?

    BTW, beautiful hair coloring on the Huff Post. Like a rainbow. Keep it going!

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