Looking at Autism From Both Sides of the Table, as a Parent and Professor

- An Interview With Claire E. Hughes-Lynch, Author of Children With High-Functioning Autism: A Parent’s Guide By Lacy Compton
Children With High-Functioning Autism
You write this book from the perspective of a special educator who found herself the parent of children with special needs. Can you share with us how and why you decided to write this book?

When things “cleared,” and I could finally reflect on what we had just been through with my daughter’s diagnosis (high-functioning autism) and treatment (a process that took about 4 years), I really wanted to (a) share with teachers what parents were feeling and thinking, and (b) share some strategies I knew and had learned with other parents. It was such a revelation to me—the things that I didn’t know that professionals assumed that I knew, or the things that were not explained to me that I knew simply because I was a professional. I had read so many web pages, books, and blogs, but none of them seemed to bridge the divide between parents and professionals. There didn’t seem to be any “Here, this is how you navigate things and this is what it means.”

That probably was the biggest driving factor in my writing the book; I knew that some information I was finding only made sense to me because of my background in special education and I also knew enough about gifted education to recognize some things as strengths, rather than deficits. I was using knowledge as a parent, but my background as a professor helped me quite a lot, and I thought that other parents could benefit from that: the “real” parental voice, and the knowledgeable professional voice that could give an “insider” view.

What advice would you give to parents just starting the autism journey?

Stay strong—you’re in for a heck of a ride. Don’t second-guess yourself, and don’t get overwhelmed. Take each day as it comes and don’t worry right now about the future. Find someone to listen to or talk to who “gets” it. It’s a terribly confusing, upsetting, and strengthening journey and none of the baby books prepare you for it. Listen to yourself: Follow your instinct about your child, but listen to professionals as well. Read, read, and read, and read people who are on opposite sides of the autism issue. Listen to your professionals and listen to other parents. Most importantly, go with what has the most information behind it and then add other ideas as your time, money, and resources allow.

One of the biggest issues many parents face is juggling their child’s academic needs with educational mandates. Do you have any suggestions for parents beginning the IEP process? How involved should parents be in their child’s education?

The IEP is a wonderful legal protection that helps a child by telling his or her teachers what to focus on in order to help the child. It provides materials if they are requested. It provides help. It is in the best interest of the child to have as specific an IEP as possible, so that materials, goals, and strategies don’t change just because a teacher does. But an IEP is only as good as a teacher or parents ask it to be.

It’s a fine balancing act: to be involved, without being “too” involved. To back off but not be “uninvolved.” Teachers who resent parents are not helpful to a child. School districts that are blocking parents aren’t fun to work with, either. The easiest way to write a good IEP while working with a school district and not alienating it, is to keep the focus on what the child needs, not past history or what the teacher can or cannot do.

The other key is to be prepared. And don’t be afraid to bring professional backup: doctor’s notes and recommendations. Bring your data. Often, you will be educating your IEP team about your child and you have to be prepared to be that advocate. The clearer you are, the less emotional you are, the better they will listen to you. An IEP is a negotiation, and it has to be approached as such.

You mention the University of Google in your book several times as a metaphor for the wide-ranging amounts and quality of information available to parents. What advice would you give to parents in order to help them sort through the glut of information and find the most valuable advice?

Unfortunately, finding the resources that you count on will take time, gobs of time, that you just really don’t have. It’s like following a breadcrumb—one writer leads to another which leads to another. If you try to eat the whole World of Google at once, you’ll make yourself sick. Find one person who “speaks” to you, and see who he or she is reading. Ask your friends. Ask other parents of children with autism. Ask bloggers. Ask your doctors. Call up a local university and ask a special education professor for reading suggestions. When you’re on Google at midnight (which is when I did most of my researching), look for the autism organizations first. Then, read blogs. Then, and only then, read the various articles written by “experts.” There are too many different opinions and too many arguing sides. And all of them make “sense” until you start thinking about your child, your situation, your instincts.

Because I did so much reading, I list in my book a tremendous resource section with organization websites and blogs that I found particularly useful. Start there, read more, and make the best decisions you can with the information you have.

What advice would you give to parents about telling others about their child’s autism?

A lot of it depends on the degree of autism or the particular area of challenge. People like labels: They help clarify some things and help with understanding. But labels also can scare others. It’s tough to know when to share and when to hold back.

It’s probably best to tell your family and very close friends upfront and have some reading materials ready for them. They’re going to be going through the journey with you, and they need to know where you’re coming from. They’re also the most likely to love you and your child no matter what, and be the most “helpful” (you may not always want their help, but you’re going to get it).

Next is your inner ring of friends, teachers, and neighbors. Tell them when you feel the need to excuse your child’s behavior or your own. You won’t be able to hand them reading materials, so tell them when you’ve got 10 minutes to share what it is to you: how autism affects you and your child on a daily basis and how they can help. You want to be precise and specific with them; for example, “She might touch your child’s clothing. It’s only because she’s interested in the texture and it’s not meant inappropriately. Just remind her that we don’t touch other people and use those exact words. That helps a lot, thanks so much.”

Strangers? “Tell” them only when there is an issue that is important to you; for example, when you really want to take your child to the museum and you know that his behavior is going to be different. If there’s an issue, gently mutter to the individual, “Thank you for your understanding. My child has autism and we’re working with it.” If you don’t want to use the “a” word, just say, “He’s got a medical issue and we’re working with it.” Susan Senator also suggests that you “tell” strangers with your attitude. Be clear and slightly louder than you need to be when you’re talking to your child: “That’s right—you’re doing well. Now, remember to . . .”, and make it clear by your words and your helpful, not apologetic, attitude that you are in charge and that you are working with this child. After all, a wheelchair “tells” others that a child can’t walk. Your interactions with the child have to be that “wheelchair” that lets others know that you’re helping this child, not spoiling him.

Bottom line: Not everyone needs to know and not everyone needs to know in the same way. But don’t react to fear or frustration with your own anger or frustration. Educate others about autism when it’s necessary or helpful to you and your child.

In the book you speak quite candidly about your children and the challenges and successes they have faced. Why do you think it’s important to be so open about your life experiences with others? What do you hope other parents gain from this approach?

I actually worried about this a little bit, but I teach through personal stories and this book is the epitome of teaching to me. I find that when I’m learning something, I can truly use it when I see what it was “really” like, if there’s a personal story involved somehow. I learned far more about autism and its reality from the “parent books” written by other parents of children with autism than I did out of scientific tomes. Autism and its diagnosis and treatment, are, ultimately, very personal experiences. My child, and other children with autism, are not scientific studies; they are complex little beings, and I wanted to retain that humanity and that understanding in the book.

I also know that teaching and learning are ongoing. I have a blog (http://www.professormother.com) where I talk about everyday issues, not just the big ones in the book, but the moments in our daily lives, so that others can share, others can learn, and so that I can make sense of it as well. I’m trying to model for others what that sense-making looks like. And I want to join the dialogue of fellow authors and bloggers. I think I have something worth saying. In order to be honest in my teaching and my caring, I have to be honest in my sharing.

I hope that parents get the equivalent of a warm hand holding theirs, and a “voice” saying, “Here’s our experience. Here are some ideas. Here is what some of this means.” I want them to know that there is hope, and that knowledge is power. I want them to know that there are others out there who share so many things they are experiencing.

What do you wish you knew when you started your experience with having a child with autism that you know now?

I wish I knew that it would be all right—that despite my fears for the worst, we ended up in a place that is livable and quite nice at times, where we have adjusted to autism and it no longer rules our lives. Autism is both a part of who my daughter is, and something we work with every day, but it’s OK—she is becoming truly who she is. I wish I knew then the tremendous support networks that exist among “autism moms” through blogs and organizations. Most of all, I wish I knew then how strong my daughter really is—how much she learns and absorbs every day and how she’s finding her way.

About the Author

Claire E. Hughes-Lynch, Ph.D., is associate professor of special education at the College of Coastal Georgia. She received her doctorate in both gifted education and special education from The College of William and Mary. Her research interests include cognitive interventions for children with autism and twice-exceptional children.

To read more about Children With High-Functioning Autism: A Parent’s Guide or to order the book, click here.