Weird

“He’s weird,” she said, chuckling nervously.

I knew it was a teachable moment, but I let it slide. While I’m not keeping it a secret, I’ve never taken the time to say to my youngest niece, “Your cousin is autistic.”  She is a bright, curious young girl who surely would have asked, “What does that mean?” This conversation has never taken place, so I decided not to interrupt our Christmas festivities with a lecture.

I know my niece loves Philip. The pair bonded early on. She can easily elicit smiles from Philip. She alone has matched his energy, willing to hug, tickle, chase, blow bubbles and endlessly repeat games with him when the adults are all tuckered out. In fact, we’ve often had to curb her enthusiasm, warning her, “Be careful. That’s too much for him.”

Both cousins and friends from the start

Both cousins and friends from the start

Yet, I’ve never explained why it is “too much.” So I feel I am partially to blame when Philip’s behavior prompts her to say, “He’s weird.”

It makes me sad how many miles separate the cousins. They are only together at holidays and birthdays. I swear she is taller every time I see her. She surpassed Grandma’s height several visits ago. Just as she outgrows her clothes, I fear she’ll soon outgrow her interest in playing with her cousin.

6.26.11 walk with hannah

Before that day comes, I must explain to her what autism is. I’ll need to admit to her that, before I knew better, I found many of Philip’s behaviors to be odd. I want her to understand that Philip is not weird, strange or scary. He is “different, not less.”

I won’t tell her that it hurt my heart to hear her say, “He’s weird.” It’s not that I believe she meant any harm, but she gave me a glimpse into Philip’s future. Some day, a classmate,  a neighbor, a co-worker, a passer-by will repeat those words. While I may be in a position to educate my niece, I likely won’t be around to teach these strangers.

I hope that I am raising Philip so that he will be confident enough with who he is to not let these words hurt. I can’t help but want to protect him. Until then, I need to seize the next teachable moment.

19 thoughts on “Weird

  1. I completely understand your feeling. I am currently working on a blog entry that is very similar. I am hoping to post on April 2, for Autism Awareness Day. I was wondering how old your niece is as I have wondered when it is appropriate to make my nieces and nephews aware of my son’s autism. We also do not live close and we see them twice a year and I know they must have lots of questions regarding his behavior. One of my sister-in-laws handles my child and his differences very well. The other not so much.

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    1. My niece is twelve. Her mom, my sister-in-law, was actually one of the first people that I called when the pediatrician first suggested autism. My sister-in-law told me she suspected autism early on. As far as family support and understanding, we have been blessed.
      Both the niece in this story and her almost 16-year-old sister have both been great with Philip. This incident happened at Christmas, but getting together for Easter reminded me of it. Yesterday, they were both great, playing with their cousin in their own way and willing to help him use his communication device.

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  2. i’m sorry. i’m sure it isn’t easy. i know how i feel anytime any of my kids is slighted or hurt. sometimes, though, i’m more hurt for them, then they are. hopefully your son only feels your niece’s love and didn’t get the comment.

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  3. I think you should tell her it hurt your heart and you struggled with how to talk to her about it; that is an important thing for her to learn. One of the most important things we, as parents of autistic individuals, can do is to make others aware of how this affects a family. You should sit down with her and her parents and explain why you’ve not addressed the issue before, and that you value her relationship with Philip, and that this has been good for him.

    I don’t know. I might be speaking from a corner where everyone in my family KNOWS about J, but doesn’t care enough to interact with him (long story…let’s not go there,) and I haven’t had the gumption to give them a piece of my mind. Your niece is young, life is long if we’re lucky, she will understand if you are candid with her…and, more importantly, she will learn something of value.

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  4. You’ll be able to do it the next time. I get why you’ve been putting it off, but once your niece understands, she definitely won’t think your son weird anymore. I hope as the years go on, Autism becomes more of a standard name so that children and adults can understand and not let hurtful words slip out due to lack of knowledge.

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  5. The thing to understand about teachable moments is, you must also be in the proper frame of mind and ready for the onslaught of questions. Know the time will come and that she accepts him on his terms already. Some fine tuning is all that’s needed and that can wait for when you are able.

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  6. When is it appropriate to make other children aware of autism? As soon as they notice it. If they already sense something is different, then it’s best that they have a proper explanation. The only other option is silence or bad information, neither of which are particularly helpful.

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  7. It’s not an easy discussion, but it doesn’t have to be hard either! I recently ordered two books from Amazon for my stepson who is 7, and I hope they will help him to better understand what Autism is and why his brother(s) act differently than some other kids. The books are called Ian’s Walk and Looking After Louis. They may be too young for a twelve year old but I am sure there are others out there too!
    Just a thought!
    Good luck!

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  8. Aggggg! It’s so hard to know. We visited a family (stayed in their house) and their son is autistic. My 3yo hadn’t met him yet and we didn’t tell her anything in advance. She saw him with a biting toy and said “That’s for babies,” even though our friend is 4yo. I was mortified and knew I should say something. I asked them if they would help me give language to what my daughter was seeing. We taught our daughter about Gus’ condition and why he needed the sensory experience of biting the toy. But, I feel for you having to navigate that as part of your everyday life.

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  9. You will know when the time is right. Education and awareness are so important. Your niece loves him and is just making an observation that he’s different. I can understand why you’d be concerned about other kids. When I was growing up, kids with glasses got teased (I didn’t have them). My youngest son wears glasses. He’s 9 now and has never once been teased – that really surprises me (in a good way). I’d spend a lot of time worrying about that when he got his first glasses at age 3. I hope that kids will become more and more accepting of other “differences” as time goes on.

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  10. *hug* By the time your son grows up people will be much more aware of the condition and much more accepting (I hope) so he won’t have to hear those comments.

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  11. This is so challenging. I think that you did choose well in not taking the moment in the middle of the Christmas everything, but from what it sounds like, she will handle this really well. I often watch my kids and interactions and see the various ways my heart WILL break, and I think that’s a lot of what you see here, magnified because people won’t understand. You seem to have such a great handle on this!

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  12. I know that when she is old enough to truly understand why her cousin is different, she will be his staunchest ally. And then she will go out into the world with that knowledge, and her love of Philip, and in turn may help educate her peers…. and be a source of support for classmates with autism.

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  13. This is a tough one. We have a nephew on the spectrum and, though he is older than my son by 6 years, we have always been honest about his diagnosis and what that means to my kids as they interact with him. Honestly, it has helped my son tremendously with the kids on the spectrum that he encounters at school and I think that’s a good thing. Your niece might just need the vocabulary to name the “weirdness” so that it makes sense to her.

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  14. If it makes you feel any better, your niece will never outgrow playing with your son. Close families are like that. I’m still indulging my (non-autistic, but still a knucklehead) youngest cousin and he’s 35 years old.

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