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Autism Acceptance Must Begin Within the Autism Community

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In case you’ve been living on a deserted island and didn’t know, April is coming and it’s kind of a big deal because it’s AUTISM ACCEPTANCE MONTH.

 

Take the current number of inspirational autism memes and multiply them times 10 to the 8th power. Puzzle pieces will clutter your Facebook feed like rainbow glitter, and people will tell you how important it is to buy blue light bulbs.

 

I’m the first to admit that I lean heavily toward the curmudgeonly side, so all this hoopla only serves to raise my stabby meter to defcon 1.

 

The ugly truth is that all this awareness propaganda is pointless when we can’t even accept people within our own community. There are more points of contention than I can even keep up with. Here are just a few:

 

  • You should not strive to alter your child’s autistic behavior AT ALL
  • You should help your child learn to be part of this world and teach them functional behavior (which may alter their autistic behavior)
  • You should ONLY paint autism as a positive attribute
  • You should not paint autism as just a happy, wonderful state of being when there are real detriments for some on the spectrum
  • You should treat autistic people equally
  • You should monitor what you say to an autistic person
  • If someone doesn’t like their autism, it’s because of someone else’s influence (evil parents or doctors)
  • Autism is different for each person
  • If an autistic person is aggressive it’s not because of the autism, it’s because they’re being abused or have “other” issues
  • Autistic children are not “drawn to water”
  • Autistic children often enjoy the sensory input of water play
  • We should devote funding to research to find a cure for autism
  • Wanting to cure autism is eugenics
  • ABA therapy is a proven intervention that helps children with autism
  • ABA therapy is harmful and abusive

 

It seems unreasonable to demand the acceptance of the general public when we cannot even accept differing viewpoints and opinions within our own community. While many choose to see autism as a positive part of themselves, something to be proud of, others who may be more affected sometimes do not appreciate the challenges that autism creates. Yet to voice that within the community will garner a swift and immediate response from legions of angry autistic villagers who will use words like “bigot” to try and eradicate any negative statements about autism. Ironic much?

 

Frustrated and discouraged parents that are coping with an aggressive child will seek out support in the community, but will often find themselves being accused of causing the aggression by being abusive in some way. Rather than seeking to empathize with these families and bring them into the fold with kind and sincere advice and insight, they’re more often than not driven away by unfounded accusations and mockery. And once that happens, you will never get them back.

 

Time and again I ask other autism families whether they think we can build a community where each person is accepted wherever they are on their journey, and whether we agree with their feelings or not. The answer I always get back is “That would be wonderful if it could be that way, but so far it hasn’t happened.”

Isn’t the entire point of awareness to educate people about how different autism is for each person? While one person embraces their autism, another may curse it. And that should be okay. Awareness isn’t about policing people’s feelings, it’s about sharing information. If another parent wants a cure for autism, it doesn’t really bother me. I don’t happen to believe we will find a cure, but if that’s what they wish for, then let them. Their hope to see an end to autism is really a hope to see suffering and pain erased from their own child. That’s where they are on their journey. It’s not my job, it’s not YOUR job, to make them wrong for feeling that way.

 

Another parent may swear by the benefits of a specific vitamin regimen. I don’t happen to buy into it, but let them try. As long as what they’re doing isn’t harmful to their child (bleach enemas, chelation, etc.), then let them give them vitamins. Who cares?

A parent said to me one day that she was at the end of her rope and “hated and despised autism.” I was glad she said it to me, rather than in another forum where she would likely be verbally flogged. It takes a little insight to not react with judgment. What this mother was really saying, underneath it all, was that her child and family were struggling and that she’d gladly take a knife and cut out her own heart to take away her child’s crying, screaming, and mental anguish. There’s something to being a parent, something the know-it-all, 20-year-old me thought she understood up until I actually had my own child. To be a parent means that when your child is hurting and you are powerless to make the hurt stop, you want to destroy that “thing” that is causing the hurt. So when the parent of a young autistic child talks about hating autism or wanting a cure, they are talking about wanting to do anything they can to take away the hurt and pain of their child. It’s normal to feel that way. It’s okay to feel that way. But when those parents are met with unkind words, judgment, and accusations, you’ve only served to kick them when they’re at their most vulnerable, lowest point.

 

As I write this, I realize this community may well be doomed. The hatred and anger is taking up space…the space we should reserve for people that may not agree with us. Whether you love or hate autism, we all want to advocate for acceptance and support. But we only leave room for those that adhere to a rigid mindset of prescribed propaganda.

 

As it stands, most people only know the basics about autism unless they are directly affected by it in their own lives. How can I blame people for not knowing, when the messages coming out of the community are so mixed and confused and filled with volatility? I wouldn’t pay much attention to us either.

 

In short, April can just suck it. It’s just another month of slick marketing campaigns that camouflage the all-out bloodbath going on out back. There won’t be any blue light bulbs or inspirational t-shirts over here. But, as always, if you or someone you know needs someone to talk to because you are in a bad place and feel buried under the weight of autism, please contact me. I will listen. I will not judge you. And I promise I will try and offer you whatever help or resources I can. You can email me at nuttydingo (at) gmail (dot) com.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

14 responses »

  1. Beautiful post. If only a community like that could exist. It would be possible if more were like you!

    Reply
  2. Good. Fucking. Stuff.

    Reply
  3. I love not only the honesty here, but also the empathy.

    Reply
  4. Brilliant. This will be shared and shared and shared.

    Reply
  5. Brilliant post. And taken to the next level, this can apply to parenting in general. I don’t know when agreeing to disagree became passé, but I miss it so. The vitriol that is flung without so much as a passing sense of “Is this going to hurt someone else?” makes me sad for the world in general. Thank you for bringing a sane voice to the discussion. It is very much appreciated.

    Reply
  6. I do not agree with all you write (not only in this post) but I think people need to stop trying to force so many people into one single streamlined version of a community by trying to forcefully correct them. I do believe we all benefit from community contacts and I do worry about some communities that focus on what I believe the wrong things or go there via the wrong ways. But I think the internet while it also exposes us to a lot of different opinions, is a great place to find people that are like-minded. That will help and support you because their view of things (beyond autism really) are similar. You don’t even have to live close to connect. I think that’s awesome.
    Everything else is utopic. Not impossible, mind you, as in other big society issues we have reached common ground over time…but far away. And no blue lights for me either. What’s that gonna do..? Lol

    Reply
  7. I fully agree with you! My daughter lives on the spectrum and so do I. I have encountered much bullying in the autism community and have been blocked by at least one person. I cared for, supported and befriended this person for years. But we had a falling out and she wrote me off. I don’t even want this person in my network. I see so much bullying by both sides in the autism community that I know it has greatly affected the lack of support we get. People do not take us seriously because of all the factions and the fighting we do amongst ourselves.

    Reply
  8. “April can just suck it.”
    Yup.

    Reply
  9. I totally agree and as parent of an adult child with autism, I really have begun to dread this month.So much so that I probably should not write any more as I find myself getting angrier and angrier at the way we, who have been in the trenches for many years are just cast aside and worse, lectured to as if autism didn’t exist until just a few years ago, April is not my favorite month.

    Reply
  10. My family and I are working on such a community in Thornton Colorado. We want to be there for you and your kids. And we need for you to be there for us as well.

    Reply
  11. I am reminded of the early civil rights movement of the 1950’s and 1960’s.There was enormous emnity between different civil rights groups, bordering on hatred.It was not until there was compromising and understanding between various groups that the civil rights movement effected great change.

    We have to work together. As an Autistic who was mute as a child for seven years, and a mom and granny to both NT and Autistic kids, though I do consider myself a radical activist firmly in support of neurodiversity and autistic pride, I know what it is like, when I have given more as a parent in every conceivable way than I was even aware was capable of and being told “That’s not good enough.” I know what that feels like. And I know it is even more “crazy making” that most of those negatively judging your parenting are usually people who have never been parents.

    it’s late. I am tired. And I do not know what to say other than we all NEED to work together, for all of the children.

    Reply

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