The following guest column was written for First Signs by Mitzi Waltz, ©2001. Mitzi is the author of several Patient Centered Guides that provide comprehensive coverage on a variety of developmental and behavioral disorders, including Autism Spectrum Disorders: Understanding the Diagnosis and Getting Help.

It’s over. The seemingly endless process of doctor visits and testing has ended.

If your child has been diagnosed with an autistic spectrum disorder (autism or pervasive developmental disorder), you may feel that your life as you know it is over, too. You’re faced with a barrage of terms you’ve never heard before, professionals who may or may not seem helpful, and friends and family members who insist on handing you magazine articles about the latest “cure,” but who don’t really seem to understand what you’re going through. Most importantly, you’re faced with essential decisions to make about your child’s health, education, and future.

Every parent who has walked this road before you has experienced this moment of post-diagnosis paralysis. It really is too much for one or two people to handle alone. It shakes your confidence, and challenges your parenting skills and your personal goals in ways you never expected. It can’t be sugarcoated or wished away.

Right after the diagnosis, you’re torn between a very real grieving process for the “perfect” child every parent hopes for, anger that your child has been affected by this disorder, fear about the future, and a parent’s innate determination to make everything better somehow. Grief, anger, and fear are difficult emotions, and it will take time to work through them. Seek professional counseling and extra support if you need it. But hold on to that core of determination for your child. Along with hope (which you should never let go of, no matter what some doctor, teacher, or relative may tell you), it’s going to be your greatest strength.

So where will that determination take you from here? In the absence of a medically proven, sure-fire treatment for autistic spectrum disorders, there are many things to consider. The following ten steps will start you on the right path.

1. Take a deep breath and begin to use the professional guidance you have been given. Begin to communicate and connect with your child and participate in your child’s therapy. Begin to understand what is most helpful to your child.

2. Get organized. Create a filing system for your child’s medical records, Early Intervention and school records, articles and pamphlets, and other items you want to close at hand.

3. Inform yourself. Read books, surf the Web, and have in-depth conversations with any expert parent or professional you can buttonhole. Find out about print and online resources that can keep you abreast of the latest news about treatments.

4. Based on what you learn, evaluate treatment possibilities, with a focus on your child’s unique characteristics and needs.

5. Assemble your treatment team. This should include a pediatrician who understands developmental issues, and who will be your child’s primary care provider. Depending on your child’s needs, you may also need a neurologist, neuropsychologist, psychiatrist, speech therapist, occupational therapist, home-based intervention therapist, and others. If your child’s needs are especially complex (for example, autism plus epilepsy or cerebral palsy), ask your HMO or county developmental delay services about case management help.

6. Learn your child’s rights, and take steps to secure them. Find out about Early Intervention programs, regional services, county developmental delay or mental health programs, and special education programs. Start the application process for services your child is eligible for. Learn about the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA), the Rehabilitation Act, and other laws that can protect and help your child.

7. Understand your insurance plan. Find out what it does and doesn’t cover. Learn how to get better services for your child, including how to appeal decisions you don’t agree with. If you are uninsured, find out about Medicaid and state-sponsored plans for uninsured children.

8. Network with other parents. Join a local or national group that can keep you informed. Find other families nearby or online who are coping with the same issues.

9. Take steps to nurture your entire family, including your partner and other children. It’s easy, and sometimes necessary, for one child’s disability to take precedence over everything else. Most parents have to deliberately make time for giving the rest of the family special attention.

10. Nurture yourself. Do what it takes to maintain your health and wellbeing by eating right, exercising, taking care of any medical needs, and making sure that you have adequate emotional support.

The worst is over, but the hard work has just begun: You must take the lead in advocating for your child.

© First Signs, Inc., May 2001

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Mitzi Waltz € http://www.mitziwaltz.com/

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