Navigating the Wilderness, or Advocating for the Teenager with Asperger’s Syndrome

By Catherine H. Knott, Ph.D.

The desire to advocate for one’s child comes naturally to most parents – as naturally as a protective instinct comes to a mother grizzly bear seeking to defend her cubs and forage for food to feed them. But human parents today operate in a complex, sophisticated world that includes bureaucracies and medical and legal systems that are much more difficult to navigate than the wildernesses that grizzlies inhabit. It is therefore critical for parents wishing to advocate for their child with Asperger’s to learn as much as possible about these different systems and the best ways to communicate with individuals within them, while honoring and maintaining their drive to protect and advocate for their child, in order to bring about positive changes effectively. To navigate the bureaucratic wilderness it is just as important to have the right supplies and preparation for the journey as one would for a trip into the physical wilderness of the grizzlies.

Parents have a limited amount of time; many have jobs that demand more than forty hours a week, and most have other children or family members needing attention and help, not to mention a household that needs constant management to function adequately. Yet, advocating effectively means committing an additional amount of time regularly to understanding and operating in the systems that affect your child on an ongoing basis. It does little good to start a conversation with your child’s teachers with a burst of energy if you are unable to follow through on their suggestions and requests for information. The first thing parents must do, therefore, to advocate effectively for any child, is to build their own support networks, while letting people know as openly as possible that the family is going to have an extra time-burden over the following months.

If you are comfortable sharing the reason why in your primary networks, including your extended family, friends and colleagues at work, any religious groups you attend, social groups, etc., you may be pleasantly surprised by the amount of support you get and by the concerned and helpful responses of other parents and relatives of special needs children. Before letting people know, it may be helpful to come up with a list of specific tasks and items that would help you most, such as additional childcare for after school meetings, or a prepared dinner once a week, or contacts with a wide range of special education teachers and counselors. Then when friends, family, and colleagues ask what they can do to help, you will know exactly what to say. Remember to include time to take care of yourself physically and mentally, because working with complex bureaucratic systems often presents parents with extra challenges and frustrations, such as periods of time when nothing seems to be happening despite all your efforts.

Since time is of the essence, it is critically important to organize and document your research efforts and contacts with people at the school, doctors’ offices, support personnel, or the legal system effectively. The record you create saves you from wasted time redoing research, and also provides your best tool for advocacy – documentation shared with professionals from any field. A good filing system, whether on paper, computer, or both, is essential; it should include, at a minimum, separate files for school information, outside agencies, family information, medical information including developmental records, contacts, and expenses. A notebook for tracking and recording all telephone contacts and meeting notes is even more important, whether it is in a section of your planner, a computer log, or a simple spiral bound notebook that you carry with you when you visit the institutions and organizations that affect your child. Date and label notes on all phone conversations, and include the full names and professional titles of everyone with whom you speak concerning your child’s progress. It is much more effective in a school meeting, for example, to be able to say, “On (date), Dr.______ told us that our child would need special support in ________” than to say, “A while back, someone told me . . .” When you think progress is too slow, it is more effective to be able to tell an administrator, “We called five times and spoke with the following staff people about the issue on these dates,” than to say, “We have been calling and calling and nothing ever happens.”

If you were climbing a mountain in an unfamiliar wilderness, you would most likely find a guide or experienced person to talk to before setting out, or at the very least read a guidebook to the area. Advocating for your child with special needs, whether Asperger’s or any other need, is a similarly challenging task, and you should not hesitate to ask others who have gone before you for advice. There are other parents, in your school or community, who have dealt with the school bureaucracy, and the medical and legal systems affecting your child. Seek them out by spreading the word in your extended networks that you are looking for such parents, or by attending parent support groups, or by asking your medical provider or school counselor for suggestions. Make sure to spend enough time with them to hear how they have navigated, successfully or unsuccessfully, the challenges these systems pose for children with Asperger’s or other special needs. It may mean inviting them for a meal or coffee break, or finding a time when they can talk for an extended period of time on the phone. Their contribution to your understanding is vital because it is local; nothing in a book will tell you which administrators or counselors in your school district are particularly helpful, or which local therapist has the best approach to dealing with Asperger’s, but parents in your community who have been advocating for their children are often eager to share their experiences and knowledge. Be particularly alert to learn the best local sources of support.

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The team behind Your Little Professor is dedicated to providing factual information for parents and caretakers of adolescents on the Autism Spectrum Disorder. We believe in connecting families to the necessary resources in order to help individuals on the spectrum succeed in day-to-day life.

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