On Beyond Therapy: Getting Started in the Community with Your Child on the Autism Spectrum

by Lisa Jo Rudy, author of Get Out, Explore and Have Fun

Kids with autism spectrum disorders get an awful lot of therapy.

Depending upon their parents’ philosophies and income, their school districts’ budgets and their location, they may be receiving ABA, Floortime, RDI, physical therapy, occupational therapy, speech therapy, social skills therapy, play therapy, behavior therapy, biomedical therapy, hearing therapy, vision therapy… And that’s just the tip of the iceberg.

All of this therapy is in support of a single goal. In the long run, we hope, kids with autism will grow up to be adults who enjoy their lives and achieve to their fullest potential. In an ideal world, we hope they’ll learn to navigate interpersonal relationships, build friendships or even romances, work in a job of their choosing, and operate as independently as a typically developing child.

The truth is, though, that neither school nor a therapist’s office is an ideal setting for meeting new people, exercising new skills, finding shared interests, or just having fun in the world. Yes, some therapists are now beginning to offer sessions in “naturalistic settings,” but even the more “naturalistic setting” has its limits when the experience is set up as a form of therapy.

Ideally, then, kids with autism really do need to get out, explore, and become engaged in the community.

Of course, this is – in many cases – more easily said than done. How do you decide where to take your child with autism so that his or her experience is positive? How do you ensure that the community organization is prepared for your child, and vice versa?

While anxieties are not only common but are also perfectly reasonable, it is possible to make smart choices for your child, your community, and yourself.

Where to start? For your own sanity and your child’s comfort, it’s important to start where your child is most comfortable and competent – and where you feel accepted and supported. Equally important, your starting place should offer opportunities that interest your child. Some possibilities include –

  • A special-needs program where you are confident that your child will be understood and valued. Possibilities include special needs sports (Challenger Sports Clubs, Special Olympics, etc.)

  • An organization where you as a parent have a strong connection. Possibilities include community organizations like the YMCA, your house of worship, a local recreation program, or a nearby swim club.

  • A program that builds on your child’s existing strengths. If he’s already a top notch bowler, a bowling league may be a good choice. If he’s a master lego builder, you might look into a lego club. By building on your child’s existing strengths, you provide your child with a stepping stone to success, while also making it easier for your child to focus on building social skills and connecting with others in the group.

Your choice of starting place will, of course, depend upon many factors. Wherever you decide to step out, though, it will be important to share information about your child with the community leader, and to share information about the new venue and activity with your child. A few tips for preparation:

  • Sit down and talk with the community leader who will be working with your child. Talk first about your child’s strengths (“he’s already a terrific dancer, and he can follow your lead”) and THEN describe his special needs (“but he may have a tough time if you use spoken language to describe dance steps”).

  • Suggest simple ways to support your child (“if you could demonstrate the steps rather than describing them, it would help a lot”) and make yourself available as a resource as necessary. You may even want to stick around for the first few sessions (though it’s often best to stay out of your child’s line of sight!).

  • Prepare your child as thoroughly as you can. You might want to create a set of images or a video to acquaint your child with what to expect. A social story can help with allaying anxieties about how to manage a new situation. If you can, take your child to watch the activity in progress and meet the folks involved before getting started.

  • You might want to introduce your child and his/her special needs to the children involved with the activity – and if so, this is something to discuss with the community leader. This is not always necessary or helpful, though, and only you know whether “outing” your child’s autism will be a plus or a minus.

While getting out and exploring with your child is important to your child, it may be even more important to you. Parents with autism tend to be isolated, and isolation can lead to frustration, loneliness, and even depression. As you start to think about getting out and about, be sure to check in with yourself to be sure you’re feeling positive about your upcoming experience. If you can, try to choose outings that have the potential to involve you, as well as your child. Who knows? Your child’s involvement in a sport, club or community program may be a ticket for you to discover new friends, activities and support for yourself!

Lisa Jo Rudy is a professional writer, researcher and consultant, and the mother of a 13-year-old boy with an autism spectrum disorder. Lisa has more than twenty years of experience in developing hands-on exhibits, interactive games, books and activities for kids with every learning style. Since 2006, she has been the ‘About.com Guide to Autism‘. Lisa’s website can be found at www.lisarudy.com.

Copyright © Jessica Kingsley Publishers 2010.

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