Thursday, May 16, 2013

Reactions I hate when I say I have a son with Autism

I ran into a girl I hadn't seen in about 20 years the other day. She was the girlfriend of one of Mr. Limefreckle's friends, I saw her fairly often when we first started dating, my husband and this particular friend were roommates at the time. We weren't really very close (she and her boyfriend fought CONSTANTLY  back in those days..I kept my distance.) but I heard her voice in the grocery store the other day, and remembered her, so I went over and we became reacquainted.

Conversation turned to Limefreckle Jr., and I explained that he had autism.  The look on her face was a look that I have come to was pity, sadness, she said "oh no" or something like that....she pretty much let me know exactly where she stood on the subject.  It's a reaction that I often get, and it's ANNOYING.  Too me it basically says "oh, poor you".  Once I remember a girl actually saying out loud "oh, that's so sad".  It makes me feel that my child is considered "less than"....of course, that's just what I read into it, I don't know that the person making that comment thinks that way.  I just know that it's probably the #1 reaction I hate the most when someone hears my son has autism.

She immediately followed that with the #2 reaction I hate the most....

"Have you read anything by Jenny McCarthy?"

This was pretty much the look on my face.  Don't get me wrong, I really like Jenny McCarthy.  I think that she is funny, and would be a lot of fun to hang out with.....and I'm sure, as a fellow Autism Mom, she probably has some great resources....but please.....I tend to get my medical advice from actual doctors, not's just something I'm a stickler for. I do admire her for getting the word out there about Autism etc., although it's been a bit of a double edge sword....everyone now thinks that vaccines caused my son's autism, and he should be eating a gluten free diet.  I've met my fair share of families with children with autism....I've yet to meet one where that diet really makes a significant difference in the child....but again, that's just my experience.

And then of course, she followed up with the #3 reaction I hate the most....a discussion of why there is so much autism in the world.  As if it is some plague taking over the nation.   "What do you think is causing it?" is the question I hear over and over.   I just said the same thing I always do "no one knows..." because that is the truth.  I don't believe there is just one cause of autism, I think there are probably several reasons there is a higher incidence of diagnosis (not the least of which is we are getting better at identifying it....not so much that more and more people are "coming down with it".)

Once the conversation turned to autism, I'd pretty much had my fill of catching up, so I said my goodbyes and continued on with my grocery shopping.  I couldn't help but feel sad, the moment I mentioned he has "autism" I felt my son was reduced to a "disease" in some one's mind, not the bright, funny, wonderful boy that he is.   Autism is not his's just something that he lives with.  I hope one day more people will understand that.



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Alicia said...

People are ignorant, end of story! You and your son are amazing. You have educated me in so many ways and that my friend is so important. I'm sorry that people react in that way, I know the feeling.

Brandy Dotson said...

Can I ask a question? Please, please do not think I'm trying to be an idiot or mean. I am truely asking with deepest concern and compassion. I recently had a very similar situation happen. Except I was the person that was told by an old friend that I hadn't seen in some time that her son is Autistic. I will be honest, I didn't know what to say. I am smart enough to know not to say any of the three things you mentioned. I didn't want to make a huge fuss over it, but yet I also didn't want my friend to think that I didn't care. My response when she told me was a simple "ok". I stayed up beat and then tried to carry on the conversation asking about other things. At the end of the conversation I got her phone # and told her we should get our young boys together for a play date soon. That was my attempt to let her know that it didn't bother me if her son was Autistic, I still would love for me and my son to get to know him. I left from seeing her wondering, did I say the right things? The very last thing I would want to do is offend her or anyone else. I encourage my child to be around people different than him. I think diversity is great and very important to teach children.
Without seeming like a jerk, I'm curious, did I respond ok? Is there something else I could have said? I do care about my friend and her journey I'm sure isn't always easy. How do I balance out my compassion without sounding like I'm trying to throw someone a pitty party? I'm really interested in hearing your thoughts. Again please don't think I'm trying to be a "witch" or insensitive. I have the utmost respect for the families and love children of all abilities and I want to do better at being an example for my son. I would absolutely die on the inside if I EVER found out that my son was cruel or mean to other children.

Loveandcrayons said...

People really are ignorant. When will we all realize that it's not defining of the persons character, just a different path their life will take them down. Ugh, sorry to hear that!

Limefreckle said...

Brandy, you are not being an idiot AT ALL!! I think the way you handled it with your friend is absolutely the best way to handle suggest you get the kids together is wonderful, that would say to me right away that you aren't judging or coming into the situation with any preconceived notions. When people ask me questions about my son, our life, our experience, I don't mind that at all, I feel sometimes I'm on a mission in life to do what I can to let people know about autism. You absolutely said the right thing to her, and she probably really appreciated the invitation to get together.