Wednesday, December 29, 2010

What Would You Tell a Teenage Girl with Autism?

Sharon daVanport's blog, Spectrumy, has this guest post from Shana Nichols, a psychologist who specializes in helping girls with autism cope with the social and emotional challenges of adolescence:

I am currently writing a companion book [to her earlier work, Girls Growing Up on
the Autism Spectrum
] for pre-teen and teen girls themselves to read titled A Girl's Guide to Growing Up on the Autism Spectrum. My co-author, Brigid Rankowski, is a college student with AS. This book is under contract with Jessica Kingsley Publishers, and at this time we are looking for short contributions from girls and women.

If you (as an adult on the spectrum) or your daughter would be interested in sharing an experience, or advice related to growing up as a female with an ASD, I would love to hear from you. We are looking for 50-200 word narratives about any topic related to growing up. Some examples include:
  • What it's like being a girl/woman with an ASD
  • Puberty
  • Having your period; gynecological exams
  • Getting a first bra
  • Friendships and mean girls; bullying; fitting in
  • Eating issues
  • Self-esteem and feeling good about yourself
  • Being true to who you are
  • Mood and anxiety
  • Sexuality
  • Relationships and dating
  • Media, popularity
  • Life goals and pursuing your dreams
  • Special interests
We are also interested in poetry and possibly art work.

I like this project --- especially when we're that young, there's so much we know but can't articulate about how we're different, particularly the growing suspicion that certain things that are very, very hard for us are as simple as breathing to most people, and thus that most people can't even tell we're struggling, because what could we possibly be struggling with? It might be helpful to have stuff written down by adults who've already figured out ways to cope with some of the really thorny, hard-to-name problems like inertia, executive dysfunction, sensory hypersensitivities, etc. Even if the solutions they describe aren't practical for the young person reading the book, they can at least show the essay to their parents and say, "See this? The problem she talks about? I have it, too."

I know I had to wait a very long time before I could describe most of the things that now seem to matter a great deal to me, and greatly affect my day-to-day welfare.

I'm not sure to what extent a guidebook written by autistic adults/other adolescents would've helped me, though, because many of my biggest problems either had little or nothing to do with autism (example: chronic, recurring nausea and other gastrointestinal issues) or my solutions to the problem required a freedom to arrange my life around my body's own needs and rhythms that most teenagers don't have (example: if I can wait a few hours before eating anything, I'll have a lot fewer problems than if I have to wake up, eat, and rush out the door). (As you can see from my choice of examples, sometimes both of those things are true at the same time).

I would also not have much, if anything, to say about many of the topics on their sample list, as many of them did not apply to me. I don't remember puberty --- at least, I don't remember menarche, and the other changes were gradual (and slight!) enough to be non-issues.

Similarly, getting a bra was not a memorable occasion for me; I wore training bras, and only ever "graduated" to sports bras.

Mean girls? What mean girls? The bullies I worried about were all boys, and I wasn't worried about being ostracized or gossiped about so much as I was worried about physical violence. (That never actually happened, but it's always a possibility when you are one gawky social outcast and your harassers are many teenage boys. I feared it, at any rate).

I was also so socially obtuse at that point in my life that many characteristic "mean girl" tactics would probably have been wasted on me.

However. There is one thing that could have made a world of difference if I'd been explicitly told this sometime during middle school, or at the beginning of freshman year of high school: that it's okay to say no to any form of sexual contact just because you don't want to do it. In other words, I wish I'd been given a Talk about consent. I wish it very much, because my not-rape in high school happened because I didn't know I could say no, so I allowed all sorts of stuff I didn't enjoy to be done to me by a boy I didn't even like.

I might write something about that, if I can get it short enough, coherent enough, and I don't think I'd be being too much of a Debbie Downer sending it in.


Leah Jane said...

I love the idea of this project as well. I think a talk on enthusiastic consent is especially important; I also recall being taken advantage of in my teen years in a way that could, if I had known the word as I do now, be described as rape.
I also think it's important to tell teen girls on the spectrum that if they have a passion, an interest, or something they enjoy doing/working with, to throw their heart into it. In my experience, I was discouraged from my passions because they were perceived as antisocial or an excuse to avoid others, and I think being deprived of my hobbies hurt me more than being "antisocial" ever could.
But that's more something that you should teach parents and caretakers about more than anything.

Sarah said...

I really like the idea behind this as well, and may submit something if I have the time and inclination. I think the discussion of consent is very important, because while I didn't have your experience, I know I tend to be very deferential in social situations and can easily see where that may have been a problem had I been propositioned.

One thing I thought of with regards to menstruation isn't autism-specific, but still is important to tell any girl. Menstruation, especially when you first have your period, can really hurt! I had no idea before I got my first period. I'd been through hours of health class and videos showing the same animation of the egg going down the fallopian tube and uterus, but no one actually mentioned physical pain! It's completely ridiculous.

A lot of the topics seem like experiences vary for reasons that have nothing to do with autism. I feel like my experiences surrounding body image, self-esteem, and teasing as a fat autistic girl were completely different from what thin autistic girls experience. Maybe I should write about that, I don't know.

Lindsay said...


Yes, I had similar issues with very painful periods. I wasn't sure what advice I could give about minimizing the pain, though, because the only way you can get birth control prescribed to you (which I've found helps *A LOT* as far as making periods more bearable) is if you have a pelvic exam! Which was not possible for me at that age! I can barely stand to have them now.

(That thing about the egg going through the tube was all I was ever taught about menstruation, too. I feel lucky that I didn't get any of the abstinence-only crap that passes for sex ed nowadays, but at the same time I don't feel like I was prepared well for just about anything related to sexual and reproductive health.)

Lindsay said...

@Leah Jane - that sucks that you were made to feel guilty about pursuing your interests!

I escaped that, but you're right that it's probably something a lot of autistic girls have to deal with, since there is so much pressure on us to be Nice to everyone, all the time.

(I blame that feminine deference training, as much as my own ignorance and inability to speak up for myself, for my being taken advantage of. I think that's probably a particularly vicious intersection for autistic girls to navigate, since we are both more vulnerable to predatory people and less able to see the danger signals, as well as less likely to have an extensive support network of friends who will watch out for us).

Unknown said...

Hi Lindsay,

I believe your contribution would be very much appreciated by Dr. Shana Nichols. The experience you describe in your "not rape" in high school, and how you would have benefited from the "talk" or at least some education on how to say no - very important! You touch upon a very sensitive subject which is not easy for many of us to talk about, and the boundary issues (protecting ourselves as young girls) are huge. I hope you seriously consider sharing something with Dr. Nichols.

Anonymous said...

"I think that's probably a particularly vicious intersection for autistic girls to navigate, since we are both more vulnerable to predatory people and less able to see the danger signals, as well as less likely to have an extensive support network of friends who will watch out for us)."

One more to add to that list:

Perhaps more likely to be instructed to *ignore* the danger signals once you do learn to see them "just in case he's an Aspie and said and did those signals by accident!!! you don't want to be ableist against your own people, do you???"