Creating Controversy

"Sometimes being a brother is even better than being a superhero."  Marc Brown

“Sometimes being a brother is even better than being a superhero.” Marc Brown

Last week I wrote a blog about siblings and autism. Judging by the number of likes, shares and tweets, it must have resonated with a lot of people. But it also offended a bunch of folks, too, and they were not shy about criticizing me and my parenting skills. Some even directed their negativity toward my kids. Most were particularly critical of Autism Speaks, the science and advocacy organization that reposted my blog earlier this week to their followers – more than 1.5 million people. I’d love to provide a link to those comments, but Autism Speaks pulled the post a few hours after it appeared.

Initially the backlash bothered me. But then I remembered that the autism community is not one big happy family.

There are people – in particular some individuals with autism – critical of my viewpoint because I do not have autism. Some maintain that those of us parenting children with autism are selfish because we feel that raising a child with autism is especially challenging and that despite our intentions, we are not the best advocates for our kids.

There is even further division over whether vaccinations cause autism. Whether or not you are affected by autism, you probably already know that these conversations get ugly and mean-spirited. I could go on with other examples (like just mentioning the name Jenny McCarthy) but these are the big ones. The bottom line is there is a lot of unnecessary division in the autism community. Imagine if those with type 1 diabetes had some kind of beef with those affected by type 2 diabetes. It all seems so ridiculous to me.

Ironically, in the end we probably all want the same things: understanding and acceptance. But before that can happen, we need to realize that each person has a unique perspective and it doesn’t mean the other is wrong.

Isn’t one opinion based predominately on someone’s thoughts and beliefs and not always something substantiated by proof? We don’t have to agree, but we shouldn’t criticize another just because we don’t share the same viewpoint.

I have many good friends who have children with autism, and we have very different theories about what causes autism or whether certain treatments and therapies even work. When we discuss these kinds of topics, we are cognizant of that fact that we are not of the same mindset. We also remain open to all possibilities, because in the end there is still so much unknown when it comes to autism. My goal in these discussions is always to be willing to listen and to learn, because ultimately all I want is to help Evan and not prove someone wrong.

So what, exactly, was so offensive about this sibling post? According to the haters, everything.

I suspect the fact that it was on the Autism Speaks website was a contributing factor because the organization isn’t without its share of controversy

Another website is planning to link the story to a piece on the same topic, and it will be interesting to see the responses. I suspect they will not be as critical.

Based on the comments, it seems the most “offensive” part of the blog was where I wrote that a sibling would rather hang out with friends anywhere but his own house because his sibling’s flapping, spinning, and meltdowns are embarrassing and hard to explain.

I can see how this comment could hurt the feelings of someone with autism. But it’s also the truth. I know someone whose teenage son couldn’t keep his hands out of his pants and was clearly enjoying himself. As much as his parents, teacher and therapists tried to get him to stop. Can you blame his sister for not inviting friends over? Does it mean that she doesn’t love him? Of course not.

Siblings of kids with autism (or special needs in general) deserve a great deal of respect. I look at my own children and see the love and acceptance they show Evan. But he is still their brother. So yes, he drives them crazy at times and yes, he periodically embarrasses. Yes, they feel like he gets more attention and often he does. Yes, they get tired of tantrums and meltdowns and the fact that there are some places we simply cannot go because Evan cannot handle it. Why should they be denied their feelings? Feelings are not wrong and should not be criticized.

2 Comments

  1. Mica Rossi

    It appears that intolerance knows no bounds sometimes. As the sister of very normal siblings, I have to say that there were times I didn’t want to bring my friends home, either, because my sibs argued or teased or wouldn’t leave me and my friends alone. My little brother embarrassed me to death more than once, and I struggled between loving him and wanting to choke him to death. So why is more expected from the siblings of a child affected by any sort of disability? Families stick together because they love each other, but that doesn’t mean they have to like everything about each other. And it sure doesn’t mean they aren’t allowed to feel embarrassed by anyone in the family, disabled or not. Lighten up, folks.

    Reply
  2. Jen Lovy (Post author)

    Very true and well said Mica. Thanks for your insight.

    Reply

Leave a Comment

Your email address will not be published. Required fields are marked *