Asperger’s in Pink: Interview With Author, Julie Clark

Author, Julie Clark interviewed by Patty Porch

What piece of advice would you have for any parents who suspect their child might have Asperger’s Syndrome?

Wow, there’s lots that came to mind, but each family is different. The first thing I would suggest is to make an appointment with your child’s pediatrician. But don’t make it with the child present, as it will be a lot easier to talk openly without them (or other siblings) there. (We scheduled it for when she was in school, so wouldn’t have to worry about getting a sitter for her.) If you suspect your pediatrician may not understand Asperger’s, consider consulting with another one. Also, keep an open mind! Your hunch may be correct, but it could be something else. Likewise, it could be Asperger’s – with something else (ASDs are often co-morbid.)

What specific struggles do you think girls with Asperger’s have compared to boys?

We’re still learning, and one hope of writing “Asperger’s in Pink” was that more families would come forward and share their stories. For one, I personally believe societal pressures of how girls “should be” are still strong, no matter the progress of the womens movement. Girls tend to have a desire to please and fit in, and may, therefore, may mask their Asperger’s – and then fall apart once they get home! On the flip side, if a girl has zero interest in fashion, makeup, etc., believe me, her peers will take note and make life unpleasant for that girl. Not every girl likes pink – or rock stars, even if most do. And, let’s face it, compared to boys, girls can be incredibly caddy. My husband will often remark at something Kristina and I are talking about regarding social life at high school, and he continues to be amazed how girls often treat other girls. Personally, I think they have a tendency for more emotional struggles. (Not that boys don’t struggle, just that girls tend to be more emotional, to begin with.)

Lack of understanding is another area. Consider special interests. Not all, but many girls tend to have special interests that mimic those of her peers (such as animals), which fly under the radar, while the interests of boys tend to stick out a little more as unusual. That plus the fact that so many people still see Asperger’s and Autism as a male’s diagnosis, often cause these super special girls to be perpetually misunderstood.

In some ways, it seems easier to get services and a diagnosis when you have a boy with Asperger’s. Why is that? What challenges do you think face parents of girls with Asperger’s?

With a ratio of about 5:1, it’s very likely those referring children for diagnosis may not have much, if any, experience with girls on the Spectrum. Add to that Asperger’s sometimes presents itself more subtle in them, these young ladies are starting out facing an uphill diagnostic battle. Even with a diagnosis, services can also be another area of frustration. Some girls may need the same services as their male counterparts, but if they present differently, it may be more difficult to secure those services. Back to the example of animals as a special interest, many will look at this and think that the girl in question just loves them a little more than her peers, so what’s the big deal? Then they start making their own judgment calls as to whether the diagnosis is accurate. With that jaded view, it become more difficult for the parents to work with that professional. The end result is that the child either misses out on needed services, or tension arises between the adults, which isn’t good, either.

Aside from the school setting, I think parents of girls with Asperger’s experience the same challenges as most special needs parents. If I were to think of a unique challenge, I’d say it’s currently the lack of understanding of Asperger’s in general. If you mention your child has ADHD, most people have heard of that, and you can proceed from there. Most people still have not heard of Asperger’s, or even non-classical autism, so many parents feel like they are already starting out on the defensive. Throw in the comments like, “I thought boys had autism?” and even more patience is required.

On a personal note, I think one challenge that needs to be met right away is how we see our children. We had to accept that life would be different, and that our daughter is different – and that is OK. We also need to stop comparing our child to the neurotypicals surrounding us everywhere we go. As another AsperMom mentioned to me a few weeks ago, standard advice doesn’t really work for families like ours. I think once we understand and accept this, it makes it easier to move forward and make the best decisions for OUR children, and OUR families. It isn’t easy, but it helps.

Marriage is an area not many want to be open and honest about. I wanted to cover it to let other couples know that they are not alone, that there is at least one other couple out there that is walking the same path. Let’s be blunt, even if your child is an (albeit misunderstood) angel, things such as copays, doctor visits, and working with the school can wear you out, leaving little left for each other. And then there’s another area – extended family stress, which many have. I think it’s important to realize this, and not play the blame game. One thing these kids crave is stability and that extends to the family unit. Marriage isn’t always easy, but it is incredibly important to us that we try to work through all difficulties, for the sake of our daughter. And it is also crucial that these kids never feel responsible for stress in the marriage. Also, remember there are stressed marriages that have nothing to do with having a special needs kid under the roof. And there are incredibly happy ones that do.

At the same time, it’s important to note that in many couples, one partner is not on board with the concept of their daughter being on the Autism Spectrum. I have heard from several moms who now not only find themselves as a single mom, but a single mom with an unsupportive father of their daughter. It just breaks my heart. If we could open up more discussion on relationships of parents of special needs kids, think the potential for good that could be done!

This is such a good question! When I wrote the book, my husband did not travel much, so it was relatively easy to plan a night in at home, rent a movie, etc. Since we moved, a lot has changed in our personal lives, and so is how we approach together time. He is really good about getting us out of the house, on lunch dates, etc. However, we still have to plan time together, even at home. We also choose to be open and honest with each other, which can be hard when life is crazy. We’ve also looked at our marriage as a commitment that we need to continue to work on. We still look at each other as teammates. For instance, we wound up with an unexpected string of snow days this week. He worked from home.  I needed to keep working from home.  Our daughter was bored to tears. Instead of trying to pit one of our careers over the other’s, we recognized the importance of spending time with Kristina, and the reality of work. Basically, for lack of a better phrase, we tag-teamed. It wasn’t perfect, but it was compromise, and we do need to compromise often. We
tell each other we love each other regularly.

Probably one of the best things that has worked for us has been to meet with Kristina’s teaching team at the beginning of each school year. This allows us to introduce our daughter to them, as well as Asperger’s. By introduce, I don’t mean an hour long presentation on Asperger’s followed by too much other information. We try to choose the parts of Asperger’s that might pose difficulty for Kristina, such as changing classes. We offer information for teachers, such as her “need” to correct others, or how she may talk to herself during tests and not know it, thereby distracting others. We ask them what is the preferred method of communication as well as frequency, and for their input. We offer suggestions of what has worked in the past, but also make an effort to try and show the school that we have a desire to work with them. In unfortunate situations, when things were not going well, we calmly went to the teacher first. If that didn’t work, then and only then, we went to the principal. Many times, some issues were misunderstandings. Unfortunately, not all were. At the end of the day, keep an open mind, and truly listen what the school has to say before jumping to conclusions. Be persistent and patient. But don’t sit back and wait for situations to resolve themselves, either. Probably the worst thing you can do is become antagonistic.

You are so right when you say they are difficult to understand and teach! Kristina is in high school now, and the game continues to change. Some days, we still wonder if we are making any successes. I think that anyone with a teenage daughter would feel the same way at times, right? She may not have much eye contact, but she sure has mastered the eye-roll! When she was younger, we used face cards, given to us by her therapist, and played the “feelings” game, explaining to her what different facial expressions mean and why it is important to understand them. We played games as a family, and practiced turn taking and being a good winner and a good loser. We spent a lot of time teaching her, whether role playing at home, playing together, prompting “thank you” when we’re out, etc., we just kept at it. Persistence is key. Honestly, we worked with her therapist for ways to help her, too. I think that is important to note because some people do not want to involve someone like a therapist in helping their child. But parents who continue to struggle in this area should consider looking into working with a qualified therapist. And it’s ok to start out working with one, then switch to another for a better fit. We did.

Now that she is older, want to know what we do? We do still use social stories. We also watch a few (ahem, “parent approved”) reality TV shows. It may sound funny, but she likes to talk throughout them, so we’ll talk about someone’s facial expression or their body language, and how that might predict how that person is going to act. They are also good to use to discuss “What would you do?” scenarios. It’s like social stories with a twist. COPS (are you cringing yet?) has been a great one for helping her see how people do all sorts of things, then lie like crazy about it. In other words, learning about not trusting others. It’s very important to teach our kids to watch body language, etc., because our super special literal kids need to realize that words do not always equal truth. These poor kids, as blunt as they can be, are also often victimized, seen as easy to take advantage of. I’ve got to admit we’re not really fans of reality TV, but these kids learn by watching and then mimicking others, so why not take advantage of a show or two, and use it as a teaching tool?