Tools for Talking about the Hard Issues
When you’re raising an autistic child, even the simplest activities and milestones are severely complicated. Imagine, then, dealing with something as inherently complicated as puberty! I’ve spent several months trying to help Aisling understand that her body is preparing to go through some pretty intense changes, and I haven’t had much luck in “getting through” to my daughter. “I don’t want to grow up!” she’ll screech. “I don’t want to have kids!” And while I’ve tried to explain to her that she never has to have children if she doesn’t want them, she has remained completely opposed to the idea of ever growing, ever changing, ever being anything than the little girl she’s relatively comfortable being.
And believe me — I understand that this isn’t just an autistic trait. I remember being a young girl myself, completely resistant to the idea of ever growing up, playing pretend games much longer than other children, reading my fantasy novels and Arthurian legends. When the girls my age were interested in “talking about boys,” I was much more interested in talking about tesseracts from my favorite L’Engle books. I can’t imagine that going through these intense, life-changing events is easy for anyone.
Still, it’s a lot more difficult to explain the nuances involved in such events to an autistic child. There’s a severe communication barrier when your child takes everything literally and can’t comprehend that there are levels and degrees to any scenario. For Aisling, life is black or white, good or bad. It’s difficult for her to understand that uncomfortable and unpleasant things will happen to her body, and that it won’t be the end of the world. She automatically takes the scenarios to the extreme, assumes the worst, and immediately panics.
With these difficulties in mind, I recently purchased a series of American Girl books for Aisling — the first of which being The Care and Keeping of You: The Body Book for Girls. The book did an excellent job at breaking down extremely dense and hard-to-explain issues in simple and easy-to-understand steps, covering a wide range of topics including healthy diets, the importance of exercise, important hygiene tips, hormonal changes, and mood swings. I went through a couple of pages each night with Aisling. She was not always receptive and attentive to the book, but she took a great deal more interest in the subjects as presented in those pages than she ever has in spontaneous conversation. I think the fact that the book is brightly illustrated helped a great deal — Aisling has an affinity for picture-books, and even though she’s a very strong reader, she tends to loose interest in any book that doesn’t include quite a few illustrations. I was pleased that this book included illustrated examples and diagrams that helped set up a common vocabulary so that Aisling and I could discuss the changes she is going through in a very clear and intelligent manner.
And we did discuss these issues, which was what pleased me the most. Aisling was able to identify with the girls who were pictured in the book and could let me know if any of the issues we discussed had ever happened to her (for instance, there was a section on nightmares and being afraid of the dark, and Aisling talked about how she had gone through these steps, how we’d purchased her a night light, etc.) She finally felt comfortable in simply telling me that she was afraid of eventually getting her period, that it sounded disgusting and she was terrified she might bleed to death — things we’d never really discussed before. And I was able to provide comfort, to assure her that it was okay to be afraid, but that these changes were quite normal and that she would be fine, that I would be there for her. I finally feel confident that I’ve “got through” to Aisling about this, that I can rest easy knowing she’ll at least understand what is happening to her whenever it does happen to her, and I’m also fairly certain she feels comfortable enough to come to me for help when she needs it.
I can’t imagine these sorts of conversations are easy for any parent, but the communication problems caused by the autism had always further complicated these talks. In addition, many of the books geared towards parents with autism have always been slightly skewed due to the fact that a large majority of autistic kids are male. I recently picked up the book Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know about the Pre-teen and Teenage Years, and I’m hoping it will provide even more helpful advice in dealing with the many issues that are sure to come up. In the meantime, I can take a small amount in a comfort in the fact that Aisling and I have walked through several basic issues in self-care, and that I have a book full of illustrations and facts that I can reference as further issues arise, as they inevitably will. I’m very, very grateful that I live in a day and age when so much information and so many tools are available.