Navigating the Wilderness, or Advocating for the Teenager with Asperger’s Syndrome (Cont.)

TAKE THE RIGHT MAP: LEARN HOW TO COMMUNICATE IN THE SYSTEM
You may think of yourself as a good communicator, a gifted conversationalist, or a friend to all, but none of these attributes will help you navigate a bureaucracy if you do not know their rules. Not knowing the appropriate forms that communication must take to be effective in a bureaucracy is like going into the wilderness with the wrong map; it doesn’t work very well, and you will probably get lost rather quickly! Most bureaucracies are more responsive to communication that is also provided in writing, but it must also fit the format of the types of records and requests that that particular bureaucracy can act upon. Just as a judge can only rely upon evidence that is presented in the right legal format, a bureaucracy, no matter how kindhearted the people are within it, can only move forward effectively with information presented in the correct framework.

An IEP or individualized education plan is the right vehicle for action for most special education students in the public schools, but even within this system requests must be filed accurately. Letters must be addressed correctly to the person who has the ability to do something about the issue you are concerned about; more important, unless you have experienced major frustrations and life-threatening setbacks, your attempts to get help over the long term will be far more fruitful if you respect the protocol for dealing with the staff hierarchy from lowest to highest. You may get quicker action if you go straight to the school superintendent, but you will probably create enmity and unhelpfulness among the staff members that were skipped over on the way to the top.

Because money and funding may also be an issue, find out within each system what the most helpful definitions are for getting the best support. For example, while some counselors and therapists may be unwilling to place Asperger’s in the Autism Spectrum, in the public school system in the United States Autism Spectrum Disorders currently receive more funding and support than an Asperger’s diagnosis alone; it may be helpful to go along with the school counselor’s suggestion to classify your child as having an Autism Spectrum Disorder, even if you may privately disagree with the certainty of the diagnosis, in order to get maximum support in school while dealing with an inconclusive assessment. When working with any therapist, call the insurance company yourself to make sure that the label the therapist is using for your child’s diagnosis and treatment meets the criteria needed for your insurance benefits to allow you to continue treatment for the maximum results for your child. It is particularly important to document the date, and name or identification number of the person you speak with when dealing with large national insurance companies.

USE THE COMPASS: REQUEST EVALUATION OF PROGRESS FREQUENTLY
The best plans for wilderness trips are of no avail if you do not check your progress toward your goals. Make sure to request frequent evaluations of progress toward the goals you have established with the professionals in the systems within which you and your child find yourselves. Ask what tests and evaluation tools are being used, and ask for other tests or measures if the results seem uninformative or skewed. Look for measures of staff performance as well as your child’s performance: how many hours of staff time is your child receiving? How often does he or she attend the special program that the school or counselor recommended? These evaluations function as a compass, and using the compass, you and the professionals can correct the direction of the treatment program if the results are not satisfactory.

If, over time, the frequent evaluations are showing little progress, it may even be a signal to you that it is time to switch the system your child is in altogether. Enrolling in a private school specializing in Asperger’s, or in a focused short-term program could put your child back on the path to his or her goals.

SHOW YOUR CHILD THE WAY
Most important of all, you must show your child how to advocate for him or herself. In the teenage years, the time is short before the teenager must advocate for him or herself without much help from you. Many parents are surprised to learn that their ability to advocate for their children diminishes substantially when their child crosses the threshold into adulthood on their eighteenth birthday. The law provides that children with attending high school must receive adequate services; after they become legal adults and have graduated from high school, it becomes the job of the student with special needs to request adequate services. No one is obligated to provide them if the student does not request them in a timely manner and in the appropriate ways within the bureaucracy of college, university, or state system. The Americans with Disabilities Act is equally complex, and in the workplace, provides for nondiscrimination only when certain requirements are met. In addition, privacy laws protect the confidential records, including grades, attendance, financial information, and medical records of college students even from their parents, often making it more difficult for parents to help. To succeed in college, it is critical that your student graduate not only from high school, but also from a training in self-advocacy. At the very moment when we are encouraging our children to be responsible and independent, we must also make sure we are teaching them when, and how, to ask for help.

Keep the lines of communication as open as possible; just as in the wilderness, it is a good idea to have an ’emergency radio system’. Someday your teenager in college may want to call you if the educational bureaucracy seems like an impenetrable thicket when he or she is trying to advocate for him or herself. If the lines are open, you may be able to coach your child through the difficulties, even from afar, building deeper bonds of trust at the same time that you help your child to find the wings of independence.


HELPFUL WEBSITES

www.aspergers.org
www.aspennj.org/
www.asperger.net/newsletter_march02williams.htm
www.autismasperger.net/writings_self_advocacy.htm
www.udel.edu/bkirby/asperger/
www.kindtree.org/

For advice from an adult with Asperger’s: http://home.att.net/~ascaris1

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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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