After the Diagnosis

You may be traveling a different path than you expected.

You wondered during pregnancy if your child would play baseball, if he’d be good at math, whom he would marry and where he would go to college. Now you wonder how to meet your child’s needs and who will be there to offer support after you’re gone.

You may face feelings of guilt, isolation, confusion and anger.

And on top of a myriad of doctors’ visits, technological jargon, labels and a mountain of information to process, you need to learn quickly to navigate a complicated system to figure out what services and treatments your child needs, and how to get them. Where information on autism was once nearly nonexistent, today you can Google the word and get more than 18 million hits. How can you sort good information from misinformation or just plain bad information? Where do you even begin?

Your path may be different than you expected, but the challenges aren’t insurmountable. What follows is a collection of suggestions and advice from parents and professionals to help you find your way through the tangle of information that surrounds autism services and supports.

First Steps

The single most consistent piece of advice you’ll get is to find other parents who have been through the process. The services available through any given school system, local and state government are about as varied as people on the spectrum, so it’s important to talk to people who have similar challenges to your loved one with autism, and are dealing with them in the same geographical location. You can connect in person, online or over the phone.

“It is important that we help connect new families with a family support system so they can have someone who has been through the maze of services and supports—that can serve as a mentor to help them navigate this new and unfamiliar territory,” explains Jody Fisher, project manager for autism services at the Ohio Department of Mental Retardation and Developmental Disabilities.

The Ohio Center for Autism and Low Incidence took this idea a step further. They asked a group of parents, “When your child was first diagnosed, what information did you need most?” Through the answers, they developed a parent guide to autism spectrum disorders. Though it was designed specifically for Ohioans, much of the manual has broader applications. You can find it online at www.ocali.org/ pdf_family/Parent_Guide.pdf.

“Once you can connect the dots, you can maneuver through the system so much easier than if you have just little pieces of information,” says Catriona Johnson, whose 15-year-old son Asher was diagnosed with autism in 1995. “Your first connection should always be with other family members, but the next thing is education—going to workshops, learning more about what your rights are, and finding out about the best practices, new ideas and new evidence-based initiatives on the cutting edge of service delivery.”

Johnson got in touch with the Howard County (Md.) ASA chapter almost immediately after Asher was diagnosed, and says she got her best leads from other families she met there. Within six months, both she and her husband were on the board of directors, and used the opportunity to make the chapter more active, bringing in speakers and hosting workshops.