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.

Sampler Week

I've been trying to sum up in my mind how the first week of summertime school has been going, and I realized there is really no way to categorize it.  It's been a huge mix.  The best was Tuesday morning, Janey's second day of school.  After Monday seeing her try to drag me in the opposite direction of the school to avoid going, Tuesday was the opposite---she was dragging me TOWARD the school, as happy as she could be, singing and skipped and thrilled to be going back.  That did my heart good to see.  I was feeling on a high, but when I went to get her that afternoon, I could see from the looks on people's faces the  day had had some issues.  The aide told me Janey had bitten her own arm a few times.  The scenario was familiar to me---Janey wanted to go for a walk, she couldn't go that very second and so she got mad and bit herself.  It was the first time they'd seen her do that, and it's an upsetting thing to see.  I reassured them that I know it happens, and her ABA specialist has gone over the plan for handling it, but it still doesn't make it easier for them, or for Janey.  That afternoon at home, she was mostly happy, but at one point, extremely suddenly, she started screaming and crying as hard as I've ever seen her do, and believe me you I've seen her cry pretty hard.  It was literally from one second to the next.  I managed to get her to stop by singing and talking in a low voice, and within 10 minutes she was happy again.  That is not Janey's typical pattern.

Yesterday, she was back to trying to drag me away from the school, but not with a lot of true effort.  She had done a little biting herself again, but there was less of the stunned look from the staff, since they'd had their baptism in fire.  I think when you see the charming, happy, delightful Janey, it's hard to picture what the depths of the tough times are like, and it's always a shock to people the first time they see it.

The sudden bursts of anger or sadness or what looks like despair are a new thing.  Usually, Janey'd go on about 2 week cycles of happy or sad.  You'd know if she was happy, she was fairly likely to stay happy, and the same with sad.  I am guessing this is early puberty related.  The up side is there have also been wonderful times of true connectedness and happiness.  A few days ago, Janey went over to Tony, hugged him, and said "I love you!"  That is the first time she's ever said that to him.  To say it meant a lot to him is putting it extremely mildly.  And she does love him.  She was waiting for him to get home last night, and I felt like it was one of the first times ever she'd really been waiting for him---that she understood he'd be home soon and was anticipating it.  I said at one point "Daddy will be home any minute" and she said in a high pitched thrilled voice---"Any MINUTE?" and went over to the window to watch for him.  It was great to see.

So it's been a week of samples of all kinds of Janey behavior.  She is keeping us on her toys.  I could hire her out to give people a quick introduction to lower functioning autism---within a day, she'd show them a huge variety of the behaviors they need to learn about.  It's tiring.  But somehow, it does feel a little like progress.