How girls and boys with autism differ....a collection of links

In response to a question on the Facebook companion page to this blog (thanks, Ragon!), I decided to look at various articles about the differences between girls and boys with autism, and give a list of links.  I'm not endorsing the articles here by including them---just trying to provide a variety of takes on the topic!  Three big points seem to keep getting mentioned---of course that less girls than boys are diagnosed with autism, that girls with autism tend to be diagnosed later, and that girls show autism differently, with less repetitive behaviors and more typical special interests.  There's a lot of talk about the brains of autistic girls and boys being different, and some about how the ratio is less skewed in children with intellectual disabilities.

If you have any articles you've found useful I didn't include (there are MANY out there!), let me know about them---I will probably do another post like this at some point.


http://www.autism.org.uk/about/what-is/gender.aspx

A pretty good piece.  It cites a lot of research, and does talk about how when there is an intellectual disability as part of the autism, the ratios get closer to 1 on 1.  But also a lot about how Aspergers type autism is harder to see in girls.

https://med.stanford.edu/news/all-news/2015/09/girls-and-boys-with-autism-differ-in-behavior-brain-structure.html

About the brain differences between girls and boys with autism, and about how boys tend to have more repetitive behaviors than girls.

http://www.icare4autism.org/news/2012/04/differences-in-autism-symptoms-for-boys-and-girls/

A short general review, including notes on how girls are more affected academically than boys, but tend to have less sensory sensitivities and repetitive behaviors.

https://www.verywell.com/differences-between-boys-and-girls-with-autism-260307

A list of differences between boys and girls with autism.  It mentioned as do several other articles that when girls have a special interest, it tends to be more typical than boys special interests--for example, being into music rather than train schedules.

https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

This is a longer and very interesting piece, although it does have a lot of the "girls with autism are harder to notice" type talk.  But it has a lot of fascinating ideas, like that girls with autism have brains that are more like typical boys than like boys with autism, and the idea that it might seem like girls are more severely affected than boys because it takes more clear-cut autistic behaviors for a girl to get diagnosed at all.

http://www.cnn.com/2012/04/04/health/mental-health/autism-sex-differences/

Talks about the differences in ratios in more pronounced autism, and about how sometimes autism in girls can show itself as severe shyness

http://www.health24.com/Medical/Autism/About-autism/girls-and-boys-have-different-autism-profiles-20161027

An interesting note about how girls and boys with autism both often have the same genetic mutations, but girls need twice as many as boys for the autism to be manifested.

https://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/?utm_source=SFTwitter

A long article that is quite well done, with three girls showcased, each with a different level of functioning and different issues as a result.  Talks about how girls are diagnosed later, as a rule.  A personal note---tells about a US researcher with a $13 million grant to study the differences between boys and girls with autism.  I hope there are some blockbusters findings from that study, as $13 would certainly go a long way in providing respite and recreations activities for the girls affected.

https://iancommunity.org/ssc/girls-autism-hiding-plain-sight

A lot about how girls with autism appear more typical than boys...but with the interesting note that girls tends to show more autistic behaviors at home than at school or elsewhere in public.

http://raisingchildren.net.au/articles/autism_spectrum_disorder_in_girls.html/context/1037

This is a good summing up type article, with a lot of the points other articles raise in bullet form.

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.

Meeting Janey's school team and feeling lucky

I had a meeting today with Janey's teacher, her ABA therapist, the ABA supervisor and the director of Janey's section of the autism program.  The school arranged the meeting just to let me get to know everyone, to put names with faces, and to talk a little about their behavior plan with Janey.

After the meeting, I had a feeling that has almost always been my feeling after any meetings at any school my children have attended---a lucky feeling.  A feeling that I am extremely fortunate in having schools, teachers, therapists, aides and administrators that are dedicated, caring, professional and intelligent people.  I don't take that for granted.  I know that isn't the case with every school or district everywhere.  But it's been my experience over the 17 years I've had dealings with the Boston Public Schools, with very, very few exceptions.

Last year was a tough one.  I didn't want to move Janey from the inclusion school she attended, the same school her brothers had attended.  That school had recently been expanded to include preschool through high school, which in Janey's case would have meant until she was 22.  Just after that, we were faced with the fact that Janey needed something more than her school could give her.  She needed to be in an autism-only classroom, in what the Boston schools call an autism strand, where she could have the supports of not just a teacher but a whole staff devoted to autistic kids.  I resisted the change, but I knew in my heart it was the right thing to do.

Janey's new school is very big.  The autism program is only a part of it, with around 19 autism classrooms.  The K-8 school has around 800 students total.  Her old school was about 220.  That was a huge change.  But I'm gradually feeling a little more at home there.  It will probably never feel quite as much like a home away from home as her old school did, but what is important is how Janey feels, and I think she feels at home there.

I saw Janey for a minute today.  Her class was going to lunch (crazily early, at 10:30!)  She was in line, holding her water bottle and looking like part of the crowd (except for being a girl---there is one other girl in her class, but as will probably always be the case for Janey, the class is mostly boys).  She came over to see me for a minute, and I hugged her and said "You need to go with your class now" and she cheerfully did.  That was the routine.  That was the plan.

We talked a lot about Janey's screaming at the meeting.  I loved it that everyone wanted to deal consistently with it, and that they did understand that it's almost impossible to see what triggers the screaming.  Since no one method seems to work much better than any other, it makes sense for there to be a consistent approach to the behavior.  At school, when she screams, they give it as little attention as possibly directly.  If she is doing a preferred activity, they take away the activity and say "Tell me when you are ready"  If it's not a preferred activity, like desk work, they leave it in front of her.  If she moves to bite her arms, they put her hands down.  When she says she is ready, they go back to what was being done.  I told them about the screaming room (when we take Janey to the bathroom to scream if she isn't able to stop) and they liked that idea and might use that as an alternative for when the screams persist.

The last few days have felt more manageable with Janey.  The bus is getting more consistent and we are falling more into the rhythm of the school year.  I made sure to tell everyone today that they preserve my sanity every day, and I hope every special educator out there knows that although I don't like to throw around the word "hero" until it's meaningless, I'll make an exception here.  You are heroes.

Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.