"My son is Autistic." It's a sentence I have said many times to many different people for just as many reasons. The responses we got were numerous and, while many of those people had the very best of intention when they carefully (or not so carefully) chose their responses, very few of them were actually helpful in any way.
I've heard "He doesn't look Autistic" or, something similar but slightly different, "Really? Are you sure? But he talks so well and has interactions with people!" Believe it or not, that in no way helps, other then to prove that you don't know very much about Autism.
When I hear this, I generally have to bite my tongue and refrain from using any of the (I think) incredibly witty sarcastic responses rushing through my head like a holiday parade and remember two things. One, they haven't been educated. That's not necessarily their fault and being, in any way, rude will not help the situation and two, I now have the chance to share some knowledge and experience with this person, leaving them with more then they had when they met me and that's a pretty awesome thing.
I've also heard "Oh! I'm so sorry!" which again, results in a parade of sarcastic remarks prancing through my head, "Oh! Thank you! I'm actually taking condolence donations in the form of video games, books and really good coffee!". I mean, it's actually pretty insulting to hear someone express their pity for you in a tone that implies the neighborhood should ban together to provide you with pre-made casseroles ready to be heat up and deli spreads to be enjoyed at the table with the flower arrangements you now use as a center piece sits colorfully in the middle. I mean really, it's not always easy but no one is dying, either. I honestly wouldn't change my kid. Because of the Autism, he is who he is and I couldn't love him more!
But there there are my absolute favorites! (Do you hear the sarcasm?) The first one is among the most common responses and it sounds something like this, "Oh, really? I know how hard that is! My cousin's boyfriend's sister has a kid with Autism and my cousin sometimes babysits him and boy have I hear stories!" I mean, I get that you're trying to relate with me and let me know I'm not alone. I understand that you are trying to say that you have some experience with Autism, which isn't wrong but let's be honest. Having some connection to someone with Autism is not the same as Autism being a part of your every day life. You might know what it's like to spend time with someone with Autism, but you don't know what it's like to be the parent of someone with Autism. That's ok. You don't need to pretend to get it for me to like you, I'd just like you more if you were honest.
But, again, I bite back the harsh words and try to understand the situation from their perspective. They are trying and I appreciate that. So, in those situations I take in a deep breath, put a smile on my face and start asking questions about their person with Autism to teach them about my son, hoping that they will walk away with some more knowledge and the understanding that it's not the same thing.
However, none of these are among the worst. I think the worst responses are these. "Yea. It seems like everyone these days have Autism. It's the fade these days. A kid's just a little weird and they slap the word 'Autism' on them...." and the rant goes on only to end with a weird revelation as if they are trying pull themselves out of the hole they've dug for themselves simply by saying, "but I'm sure your kid really does have Autism. I'm just saying that a lot of these other kids...." I. Hate. That. Response. I mean, how are we supposed to feel about that. Maybe it is "over diagnosed" and maybe some parents do lean on it as a crutch or excuse but you've managed to, in your rate, some how minimize our struggle, our story and our battles. You've let me know that you believe that, somehow, my son's struggles are my fault and a lack of good parenting and you've alienated me. I'm not standing in a room feeling isolated and slightly attacked and let's not forget defensive.
Let me be clear, I'm not saying that your views are invalid, but there is a time and place for sharing those views and immediately after I share with you a piece of my life with the information that my son has Autism is not the time or place. I have handled this situation differently over the years but it can be hard. I often find myself almost begging for them to believe me and stop looking at me with judgment and accusation. I have to remind myself that I'm doing, as I always have, the best I can and, to put it in the words of my son, "they don't know my life". I've tried to share information and education, but often this group already have their minds made up and won't listen.
Finally, and I think the absolutely worst and most hateful response sounds like this, "Well have you tried parenting him?" This doesn't happen often but myself and, even my husband, have heard it a few times. Again, there's a conga line in my heard begging me to get nasty back with a very sarcastic response laced with mock surprise as I say, "No! It never crossed my mind! I'm so glad you suggested that. I've just been sitting here twiddling my thumbs all these years! It's a wonder he managed to survive this long without actually being parented!" but I don't. I maybe should, but I don't. I usually look at them like they are the most ridiculous thing I have ever seen (and that's saying something!) and say with utter disbelief, "Uh...yea..." and sometimes I add, "He's still alive, right?" before trying to remove my self from the situation because, let's be real, I'm now mad, hurt, offended and trying to ignore the growing feelings of being judged and persecuted, why would I stick around for more or risk making matters worse my reacting out of emotion rather then making a good name for Autism parents every where and show the judgmental one some compassion and education.
So, what about the right response? you ask. Well that one is actually pretty rare. It's actually pretty simple. It looks like this, "Oh, really. Ok." and then maybe follow that up with questions you want answered so that you can learn because the thing is, Autism doesn't define him or us. It doesn't make is in need of pity or judgment or rudeness. It makes us people and a family that might look different then yours. It means that we need support and acceptance and understanding. That's what we need.
At least that's my take of it as a Autism mom. You're welcome to check out what my son, we call him Piece's thoughts here!
So what are your thoughts? When you share that you have Autism, are an Autism parent or anything of the like, how do you hope people respond? What's the worst way someone responded to you? Let us know in the comments!
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