Her Autism Story in 10 tweets

Monday was World Autism Day and I tweeted some thoughts about our journey. Our story is different than the typical Autism story – for one, it’s my daughter that was diagnosed. That makes her a minority in the Autism world where boys are diagnosed about five times more often than girls.

Last week, you may have seen the reports that Autism diagnoses are up to 1 in 88 kids – nearly twice as common as previously believed. The evidence points to better diagnostic practices and I, for one, could not be happier about it. Early interventions make a world of difference in Autism therapies, so if we can get every kid on the spectrum the support that they need – then there is hope for a brighter future.

Her story

Every kid with Autism has their own story, their own way of expressing the diagnosis. I have read everything I could lay my hands on, but found that the best resources for us when written about girls on the spectrum. Girls are different than boys and I think that once these differences are better understood we will see the incidence rate rise even more.

 And that will mean that more kids will get the help and support they need.

Some resources I found helpful are listed below. Both are written with the older Aspie in mind, and Aspergirls in particular had great chapters on being happy, as well as a chart showing the differences between boys and girls with Asperger’s.

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Girls bully, too: A comment on princesses and how we treat women that “can”

Ok – just read this post by Peggy Orenstein. It’s not new, it was originally published in November.http://peggyorenstein.com/blog/why-princesses-wont-be-presidentsThis “princess” connection is fascinating to me. One of my daughters was very into princesses, etc. so to me its not the “evil” empire that some people feel that it is. But then when my daughter was invited to a princess party with other 6 year olds, she went as a pirate. Not a pirate princess, a pirate.  I guess I just had a different princess-parenting experience.I see the do-it-all-perfectly-and-effortlessly thing differently, I suppose. I don’t associate that with princesses at all. I associate it with the way women talk and the way they judge each other.

I think the limiting factor here is the very real possibility that you will be publicly shamed for leaving your house without perfect make-up, making the slightest mistake or showing any effort whatsoever.

Look at the number of articles related to Hilary Clinton’s hairstyle vs. Madeleine Albright! (FYI – 1.1 million in .25 seconds vs 180k in .53 seconds)

It is sad but true.

My 16 yo is presenting a seminar to teenagers this weekend at a local 4H leadership conference. The topic is bullying, with an emphasis on how to support the victim. She has done a lot of research to prepare and one of the stats she pulled was about the shocking percentages of girls that experience emotional bullying through negative comments DAILY. The comments might be about their hairstyle, their clothes, their grades, etc. but very often girls EXPECT to hear negative comments from their peers with any sort of achievement. In contrast, boys could expect bullying to be more physical and tended to be doled out to those who “can’t” rather than those that “can.” **

The message is clear – do well, girls, and there is an army waiting to tear you down.

This is what we have to fight, people.

 
 
 

Peggy Orenstein is an award-winning writer, editor and speaker about issues affecting girls and women.
 
** Please note – NEITHER form of bullying is ok. I bring it up because the contrast was interesting to me.
 

Say goodbye to the pink fan

The other day I had a handyman come over and replace the ceiling fan in my daughter’s room. The fan was in good working order, so he was careful with it. He placed it gently in some Styrofoam packing material and it sat in my living room for a day before finding a new home.

We have been planning to replace that fan for months. Over the summer, my girls and I took on a massive redecorating project. I had to pack up my entire home office, including the huge closet of office/craft/sewing/misc stuff and move everything to the living room so the office could be repainted. Once three walls were lavender and one was a dramatically dark blue, my 12 year old could move in and start decorating.

Once her room was empty, it was repainted for my 15 year old daughter, the artsy one. The walls in her new room are deep purple, lime green, bright cerulean blue and … wait for it… black chalkboard.  An entire wall available for friends to graffiti to their teenage hearts’ content, and believe me – that is a lot of graffiti.

With the colorful walls and the ironically black bedding, it was clear that the pink ceiling fan with flowers and butterflies was affecting the overall chi in the room.

So the fan went across the street to the young family with the little girls age 5 and 3. My husband dropped it off and there was quite a squeal from the 5 year old. “Mommy! That for my room?”

Honestly, I had no problem with this entire plan until the fan was gone. Something about watching that little girly-ness leaving forever left me a little sad. It is not like the fact that my girls are growing up was a secret. In fact, the evidence is in every corner of my life: homework that involves medieval politics, the miniature Sephora store in my hall bathroom, the bras of every size and color going through the wash each week…  

But this weekend I just had a feeling that life is shifting into fast forward.

My oldest will be 16 next month. She will not get a driver’s license on her birthday, but she will soon. In April, my “little one” will be 13. She does not have any interest in boys just yet, but she will soon. Instead of the hiding presents from Santa Claus, we have planned a family trip to New York for Christmas break that includes tickets to Wicked and lots of shopping. Last summer we visited a college out of state (my alma mater), this summer we will visit a few more.

I don’t have any regrets about being a working mom. I have been incredibly lucky to work at home for most of the last 10 years. I get a lot of time with my daughters and I am lucky that they think I am pretty ok to hang out with most of the time.  They are interesting people to talk to and I like that we can have deep conversations about life, politics and the economy.

“It’s all good,” I try to remind myself. This is what I have been working towards. But I can’t help it, there are tears in my eyes.

This post was originally published on WorkingMother.com on November 15, 2011.

When I look in the mirror

I sat on the bed and held Becca while she cried. I smoothed her hair, made soothing sounds and told her it was ok. Inside my heart was breaking for her. Between sobs she poured out her heart.

“I know there are other kids that don’t have as much as I do. I know that I am so lucky because I had you and daddy and you love me so much. But when I look in the mirror, I don’t think I’m pretty and it makes me feel so bad.”

The awkwardness of 12. That feeling that you are the only person who doesn’t have it together. She is noticing her body for the first time, really, and noticing that it is changing. Although at this point, it hasn’t changed much. She has always been petite, always the shortest of her friends. At 12 years old she is barely 65 pounds – everything about her is small and fairylike.

Then she entered the Junior High Girls Locker Room and the self image doubts entered right behind her — along with a lot of girls farther along in the development process.

I remember those days. To be honest, I can’t say they are fully behind me. I have a great job, loving husband, sweet friends and wonderful family but the number of the scale can ruin my week. As a mom, I have tried to keep my own body issues out of the spotlight. I don’t go on crazy diets or constantly talk about losing weight. Instead I have emphasized a desire for more energy by exercising, or choosing to cut out sugar.

I really thought Becca would not fall down that rabbit hole. But there we sat on her bed, starting a new phase of our relationship. She is looking to me for emotional support. After years of saying that it’s the beauty inside that really counts, I need to help her learn feel good about her outside beauty, too.

Have you had this conversation with your daughter? What did you say?

This post was originally published on WorkingMother.com on May 18,2011.