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.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Showing posts with label socializing. Show all posts
Showing posts with label socializing. Show all posts
Sunday, May 7, 2017
Tuesday, February 4, 2014
The Politically Incorrect Enjoyment of Autism Parenting
I've been thinking for a while about this blog entry, and having some trouble putting into words just what I want to say, what has been filling my mind for a while now. Last week one day, when Janey was having a very sweet day, Tony and I got talking about how sometimes, it's a good feeling to know she'll always be with us. We watch the boys moving on. William is in college, and weeks can go by where we barely hear from him. Freddy is a junior in high school, and busy so much of the time. Soon he too will be in college, and then they both will be adults. I hope we stay very close with them, always, but I realize there are no guarantees. And that is how it should be---kids grow up. But Janey will not be growing up in that same way. She will become an adult, but she will always be our child. I usually say something here like "barring miracles" but I've come to realize the miracles aren't on the way, in our case. I've accepted that. And sometimes, I can truly embrace the idea of a child that stays at home forever.
So what's the problem? Well, there are two ideas that come up over and over again in my reading about autism, both of which I do very much like. One is autism acceptance---being able to see Janey as valid and important and lovable just the way she is. I try to do that. I am not perfect at it---there are days when Janey screams all day or says nothing for many days but "I want strawberry milk" or "I want Kipper" that autism is harder to accept than it is on the better days. But most of the time, I accept her autism, and on the good days, I embrace it. The other idea is assuming competence. I want to assume that Janey understands much more than she does, that she maybe even understands everything, that she has abilities that she hasn't shown us. Basically, the philosophy is not to underestimate Janey, not to rule out anything in terms of what she can do.
So---I accept Janey as she is. I accept that as she is right now, she will not be able to ever live on her own. She is my child forever, and that is sometimes a good thought. However, I also want to assume that Janey has untapped potential, that some day, somehow, she might do what I'm told other people with autism have done---she might suddenly show that she can do things like read anything, communicate fully somehow---heck, maybe go to college. And when I think that way, feeling happy that she is going to always be in my house, be my child forever, seems wrong somehow. SO---how can I feel both at once?
There are many more examples I can think of like this. I feel happy that Janey will never experience the nasty side of girls, the mean girls and the bullying. But that is accepting that she is not going to ever understand social interactions at any kind of higher level. I love it that Janey loves me wholeheartedly, that she smiles at me at times with the intense love that is uncomplicated by the complex feelings mothers and daughters have about each other as they get older. But don't I want her to mature, to be able to see me as a real, flawed person she can break away from? I love how Janey loves music---how she claps and jumps and thrills with excitement when a song she loves comes on, how she remembers any song she's ever heard. But shouldn't I wish for her to have a mind that is more typical, a mind that doesn't have room for all that because it's learning algebra or history or biology? I feel glad she will never have her heart broken due to an ended romance. But I should be dreaming of her being able to experience that romance in the first place.
In short, when I accept the good parts that come with autism, I am also limiting what I expect from Janey. I feel joy in the parts of her that are childlike and will remain so. But should I feel only sorrow that she is not going to have a normal adult life? Is it okay for autism acceptance to be also a joy in what autism has made Janey, even if her limits are part of what it's made her? I don't know. I might be just overthinking. But for now, I'm going to choose to embrace the parts of autism mothering that I can, and to try to do so wholeheartedly, without worrying what that says about me. I'm going to allow myself to picture what is good about having my child be a child forever.
So what's the problem? Well, there are two ideas that come up over and over again in my reading about autism, both of which I do very much like. One is autism acceptance---being able to see Janey as valid and important and lovable just the way she is. I try to do that. I am not perfect at it---there are days when Janey screams all day or says nothing for many days but "I want strawberry milk" or "I want Kipper" that autism is harder to accept than it is on the better days. But most of the time, I accept her autism, and on the good days, I embrace it. The other idea is assuming competence. I want to assume that Janey understands much more than she does, that she maybe even understands everything, that she has abilities that she hasn't shown us. Basically, the philosophy is not to underestimate Janey, not to rule out anything in terms of what she can do.
So---I accept Janey as she is. I accept that as she is right now, she will not be able to ever live on her own. She is my child forever, and that is sometimes a good thought. However, I also want to assume that Janey has untapped potential, that some day, somehow, she might do what I'm told other people with autism have done---she might suddenly show that she can do things like read anything, communicate fully somehow---heck, maybe go to college. And when I think that way, feeling happy that she is going to always be in my house, be my child forever, seems wrong somehow. SO---how can I feel both at once?
There are many more examples I can think of like this. I feel happy that Janey will never experience the nasty side of girls, the mean girls and the bullying. But that is accepting that she is not going to ever understand social interactions at any kind of higher level. I love it that Janey loves me wholeheartedly, that she smiles at me at times with the intense love that is uncomplicated by the complex feelings mothers and daughters have about each other as they get older. But don't I want her to mature, to be able to see me as a real, flawed person she can break away from? I love how Janey loves music---how she claps and jumps and thrills with excitement when a song she loves comes on, how she remembers any song she's ever heard. But shouldn't I wish for her to have a mind that is more typical, a mind that doesn't have room for all that because it's learning algebra or history or biology? I feel glad she will never have her heart broken due to an ended romance. But I should be dreaming of her being able to experience that romance in the first place.
In short, when I accept the good parts that come with autism, I am also limiting what I expect from Janey. I feel joy in the parts of her that are childlike and will remain so. But should I feel only sorrow that she is not going to have a normal adult life? Is it okay for autism acceptance to be also a joy in what autism has made Janey, even if her limits are part of what it's made her? I don't know. I might be just overthinking. But for now, I'm going to choose to embrace the parts of autism mothering that I can, and to try to do so wholeheartedly, without worrying what that says about me. I'm going to allow myself to picture what is good about having my child be a child forever.
Sunday, September 30, 2012
Isolation and Autism
For some reason, this weekend I have been feeling the isolation that comes with having an autistic child more intensely than usual. Most of the time, I am okay with being a bit isolated. I am a bit of a loner, although I have wonderful friends I very much enjoy spending time with, but I enjoy my time alone, too. I can usually be happy for days if I have enough books to read or some good TV to watch or a game to play. But lately, I have been thinking about how hard it is to connect with others with the restraints that autism puts on a family. The kind of interaction that come naturally to most people and families doesn't for us, and I am feeling it more lately.
There's a lot of ways autism isolates. I'd say the main one is obvious---just how hard it is to take Janey or other autistic kids any place. We can't take off for a weekend to visit people, we can't get together casually with other families, we can't decide to go out to eat or to a museum or event or even shopping, without figuring out first how Janey will do, if she will tolerate however long it takes to get there, if she will freak out when she gets there, who will be responsible for keeping an eye on her at all, all times, who will hold her hand, what we will do if we need to leave---all that. Most of the time, we don't even consider such expeditions. They just are out of the realm of our lives. We necessarily center our lives around our house, which is fine, most of the time, but it certainly gets closed in feeling now and then.
Also, when you have young kids, the main way you meet friends is through your children. Your kids go to a friend's house, you take them there or pick them up and talk to the parents, and sometimes, you become friends. You take your child to the playground, to lessons, to sports, to activities, and you meet people. With Janey, that doesn't happen. She doesn't get invited to people's houses. We can't casually go to the playground. The activities she can do often cost a great deal of money, which we can't afford. We take her to school and bring her home. That is what she does.
Autism also puts a strain on old friendships. It takes a special kind of friend to understand how autism has changed my life, why I can't be the friend I used to be. I forget birthdays, I am not there to listen, I can't get together without planning. I am lucky to have friends that have adapted, but I can't spend the time with them I wish to.
As for couples events, that just doesn't happen. Tony often gets together with friends from high school. I have never met most of these people, although they sound great. If Tony is going out at night, I must stay home with Janey, unless the boys can watch her. During the school year, that is mostly impossible. They have tons of homework, or their own activities. If we are going to be out at all late, we don't feel right leaving Janey home with them either. So I stay with Janey.
There's also just the exhaustion autism brings. During the day, when Janey is at school, I either work at home, do housework or nap. I don't use the time for socializing much, or nothing gets done. It's very hard to do laundry or on-line work or catch up on night sleep I don't get while Janey is home.
I am very thankful for social media, but I do have to admit it doesn't replace actual getting together with friends. Last night, I felt frustrated and alone and needing to talk to someone. That's not the kind of thing I'm going to post on Facebook, or email people about. I could have called a friend, but it was late. That would be the case with or without Janey, of course, but I had reached that point due to the isolation that is there all the time. I felt alone, I think, due to the restrictions on my life that keep me from being able to connect in person with people much.
So do I have a solution or point here? Not really. It's just the way it is. To have friends, you need to be a friend. We tell that to kids, and that's the problem. I don't think I am able to be the friend I want to be to people any more, and that is maybe one of the hardest parts of this autism gig.
There's a lot of ways autism isolates. I'd say the main one is obvious---just how hard it is to take Janey or other autistic kids any place. We can't take off for a weekend to visit people, we can't get together casually with other families, we can't decide to go out to eat or to a museum or event or even shopping, without figuring out first how Janey will do, if she will tolerate however long it takes to get there, if she will freak out when she gets there, who will be responsible for keeping an eye on her at all, all times, who will hold her hand, what we will do if we need to leave---all that. Most of the time, we don't even consider such expeditions. They just are out of the realm of our lives. We necessarily center our lives around our house, which is fine, most of the time, but it certainly gets closed in feeling now and then.
Also, when you have young kids, the main way you meet friends is through your children. Your kids go to a friend's house, you take them there or pick them up and talk to the parents, and sometimes, you become friends. You take your child to the playground, to lessons, to sports, to activities, and you meet people. With Janey, that doesn't happen. She doesn't get invited to people's houses. We can't casually go to the playground. The activities she can do often cost a great deal of money, which we can't afford. We take her to school and bring her home. That is what she does.
Autism also puts a strain on old friendships. It takes a special kind of friend to understand how autism has changed my life, why I can't be the friend I used to be. I forget birthdays, I am not there to listen, I can't get together without planning. I am lucky to have friends that have adapted, but I can't spend the time with them I wish to.
As for couples events, that just doesn't happen. Tony often gets together with friends from high school. I have never met most of these people, although they sound great. If Tony is going out at night, I must stay home with Janey, unless the boys can watch her. During the school year, that is mostly impossible. They have tons of homework, or their own activities. If we are going to be out at all late, we don't feel right leaving Janey home with them either. So I stay with Janey.
There's also just the exhaustion autism brings. During the day, when Janey is at school, I either work at home, do housework or nap. I don't use the time for socializing much, or nothing gets done. It's very hard to do laundry or on-line work or catch up on night sleep I don't get while Janey is home.
I am very thankful for social media, but I do have to admit it doesn't replace actual getting together with friends. Last night, I felt frustrated and alone and needing to talk to someone. That's not the kind of thing I'm going to post on Facebook, or email people about. I could have called a friend, but it was late. That would be the case with or without Janey, of course, but I had reached that point due to the isolation that is there all the time. I felt alone, I think, due to the restrictions on my life that keep me from being able to connect in person with people much.
So do I have a solution or point here? Not really. It's just the way it is. To have friends, you need to be a friend. We tell that to kids, and that's the problem. I don't think I am able to be the friend I want to be to people any more, and that is maybe one of the hardest parts of this autism gig.
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