How are girls with autism different than boys with autism?

A good question was posed by my father recently.  He asked me what I had found over the years made autism different when shown in girls as opposed to boys.  I had some ideas, based on talking (mostly online!) to other mothers of autistic girls, but I wanted to find out more, so I reached out to people who are members of the Facebook group that is a companion to this blog, and I got some great responses!

A BIG NOTE HERE!  I am NOT an expert on autism or autism in girls!  ANOTHER BIG NOTE!  Everything I note here is NOT TRUE OF ALL GIRLS!  For everyone that had an idea for a trait that was different in girls, there were others who saw the opposite trait.  And there's the old saying "You've seen one child with autism, you've seen one child with autism", meaning kids with autism are NOT homogeneous!  They are very different from each other.  But I think it's worthwhile to collect some ideas and trends I've seen, if only to spark conversation!

The first difference with girls is one of the few that I've been actually told by someone who IS an autism expert, a specialist at a clinic we take Janey too.  I've also read a few studies that say something similar---girls with autism, statistically, are more severely affected by autism than boys.  Of course, there's many ways to look at being severely affected.  You can't just say on a scale of 1 to 100 how severely affected someone is.  But if you looked at the impact of autism on a life, and perhaps looked at the likelihood of a child someday living independently, overall, I think girls would be seen as more severely affected.  Not every girl, of course, but as a group.

Another difference mentioned by quite a few people was that girls with autism seem to be more social than boys with autism, or they want to have friends more.  They often have good eye contact, and are good at imitating social speech, even if what they are saying is echolalia from TV shows or videos.  This can make them seem more verbal than they really are.  They often want very much to have friends, but aren't sure how to go about it.

In terms of sensory issues, there's a LOT of girls that do have severe sensory issues, but many also that don't.  They seem less bothered as a group by noises, and often are less picky eaters than boys with autism.  It seems a few more of them are sensory seekers, which can be an issue in itself---they like things like hot sauce or smashing into things.

Girls with autism often seem to not have the extreme need for routine that boys do.  They are more willing to go along with changes in the day's routine.  This being said, many girls with autism are prone to MAJOR mood swings, which could be wrongly interpreted as being caused by routine changes.  I've talked to quite a few women with older girls that said puberty was extremely, extremely tough, with PMS being almost unbearable.

Many girls with autism are very affectionate.  They like people, and want to be around people they especially like.  I have seen this very much in Janey.  She has a few favorite people, and asks about them constantly.  Other girls also seem to have people that are very, very special to them.

In terms of speech, for the girls that are verbal, nearly every person I've ever talked to has told me their girls use a great deal of echolalia.  A very lot of their speech is scripted in some way, but often used very appropriately.  For example, if they want to say they are sorry about something, they might say "I'm terribly sorry I disturbed you", a line from a video they've watched over and over, but also pretty much saying what they want to say!

Another point a lot of people noted is that their girls don't have special interests as much as boys they know or have heard of.  Many, many boys with autism have a very major special interest---trains, dinosaurs, drains, bridges, whatever---but I have not heard of many girls that has an overriding interest like this.

Although there are many, many more traits I'd love to have people tell me about, there is something odd I've noticed from pictures I've seen of girls with autism.  Many of them look alike.  It's hard to put my finger on, because of course girls with autism come in all kinds of colors and hair tones and heights and weights and so on.  But there is somehow a look they share.  It's a beautiful look!  But there's more to it---a way they smile, a look to their hair, a way of holding themselves---that just makes them look a bit like relatives.

The biggest difference between girls and boys with autism, as you might have guessed from the name of my blog, is that autism is rarer in girls.  The CDC says that 1 in 42 boys have autism, while 1 in 189 girls do.  That makes autism almost 5 times more common in boys.  Way back when Janey was first diagnosed and I was picking a name for this blog, I went with Rarer In Girls.  Rare can mean several things.  Maybe for tonight, I'll go with the 3rd definition that came up on a quick Google search for the meaning of the word---"unusually good or remarkable"  Our girls, I think we can all agree, are remarkable.

Reflections on Janey's week at camp

We picked up Janey early this morning from her week at Camp Fatima.  What an amazing place it is!  We were truly blown away by the kindness and generosity of the so many people that make their Exceptional Citizens Week possible.  Her counselor, Dawn, teaches autistic kids during the school year, and then takes a whole week of her year to be with an autistic child at camp, and she is just one of the hundreds of volunteers that make the camp possible.  Janey went on boat rides, rode horses, sang in the church choir, went to a dance, shot a rifle, did arts and crafts, had meals served in the dining hall by teenage boy waiters, slept in a cabin, went to a campfire, had her nails done in the camp salon, hung out and ran around with her camp friends---she had a true week of camp.  And we had a week of true respite.

We got great reports from camp.  Janey was very happy there.  Her counselor figured out she does have a tough time every day from about 3-5 pm.  This almost made me feel good to hear, as that is her tough time at home too, and it made me feel less like I'm doing something wrong during that time and more like that's just Janey.  But the rest of the time, she was nearly all happy.  I had guessed she might be.  Janey is a natural camp-goer.  She is in so many ways the opposite of me as a child.  I was a natural get-homesick-and-go-home-early camper.  Camp was everything I didn't like then and still don't like now---sports, lots of togetherness, not a lot of downtime, a place for extroverts.  Janey is not like me.  She loves to be active and busy.  She is not shy or introverted.  That was one big reflection I had on this week.  A lot of Janey isn't her autism.  It's just her, who she is and I think who she would be with the autism or not.  I need to work harder to give her the kind of recreation and activities she craves.

At home, we got a very lot of sleep and rest, and were able to eat out a lot, go on some day trips and watch a ton of "Dexter" on TV---all things we don't do with Janey home. We had a lot of fun.  But I missed Janey very much---to be completely honest, much more than I expected to.  I knew I would miss her, but because we have never, ever before had a week of respite, to say nothing of really a full day of respite, I thought the missing would be overwhelmed by the freedom.  I loved the freedom, but I missed her so, so much.  Somehow, without her, we weren't quite operating at our best as a family.  We argued more.  The boys fought more. We got irritated at smaller things---bad drivers, bad pizza, forgotten keys.
We had a great time, but it somehow felt like a great time with a piece missing.

We eased Janey back into our regular life by stopping on the way home at a friend's camp (camp in the Maine meaning, a summer house) on a lake.  We had a great boat ride and Janey had time to run around in the beautiful yard.  Then the long drive home, and re-entry.  That was a little tough.  Janey ran through all the things she most likes to do at home quickly---some iPad time, a video, asking Daddy to cook things, ordering us to snuggle her on the bed, some YouTube---and then it seemed to hit her and she melted down some.  She was tired and I am sure she was missing camp.

What did I learn from this week?  I learned Janey can thrive away from me.  I learned I need to find a way to get more sleep, because sleeping through the night felt amazing.  I learned I have to find more ways for Janey to be active physically.  I learned that there are many incredible people out there who give of their own time for families like ours.  I learned, as I keep learning in life, that our children are their own people.  They like different things than we do.  They truly do deserve, and enjoy, a life that is at times apart from us.  But I also learned that our family doesn't feel complete without Janey.  She is part of us.  At times, when Janey is very tough, it has felt like she has somehow taken away the family life we were supposed to have, but I know now that our family without her isn't our family.  It's a different family.  We need Janey, maybe even more than she needs us.

It's all about Daddy right now

Lately, Janey has been going through an "it's all about Daddy" stage.  It's a stage I think a lot of girls go through at about age 4, and as Janey is delayed with most things, it's about the time for it, I guess.  Tony is a wonderful father, and he and Janey have always had a special bond.  We say a lot that she's the most like him, in her basic personality, the part that is unaffected by autism.  She likes to be on the move at all times, she loves cooking and food, she is more athletic than the boys, she just clicks with him very well.  But she's taking it to a new level the last few weeks.  The few days that for some reason Daddy wasn't there when she got home from after-school, which he usually is, she fell apart.  It's hard with her, as she doesn't come out and say "I'm sad because Daddy isn't here", but she asks to do the things they do together, and when I can't do them, or can't do them the way Daddy does, she is heartbroken.  This morning, I felt like for one of the first times, she was understanding he was about to go to work, and she was not happy at all.  A hour or so after he left, she looked at me in tears and said "Daddy!  Have a great day!  Daddy!" which is what he said to her before he left.  I called him at work so he could say it to her again and remind her he'll be home tonight, which seemed to work.

The picture is from a few years ago, but shows well the happiness Janey gets from the games that Daddy thinks up---this time, drumming with cans.

The hard part is when Tony has to be away.  It's hard for all of us, but it's especially hard for Janey.  His current job requires a week or so here and there of training around the country---last year it added up to 5 weeks, which was unusually much, but most years will require some time.  And generalizing more, it's hard for Janey when anyone isn't around that she expects to be around.  The other day, she rode along when we took her cousin Zeben back to the airport.  That was hard, but what was harder is that William got out with him to say goodbye and took the T home, so he wasn't in the car going home.  About half way home, Janey suddenly said "William back!" and started to cry.  I know she thought William had left, like Zeben leaves, and wouldn't be back for a while.  We try to explain, but that is a concept that's a big beyond her.  It must be a scary world to live in, without a mental clock or calendar in her head, or one that seems to work well.  People can just disappear, and although she sometimes knows when they will be back, if that schedule is even a little off, I think she feels very unsure if she'll ever see them again.

I'm very, lucky to have a husband like Tony, and the kids are lucky to have him as a father.  He loves Janey (and the boys) exactly as they are.  Her autism is something that he can, better than I can, look around and past, to just see the little girl he wanted so much, the girl that adores him and is his joy.  Here they are, running together, two of the loves of my life.