As the parent of a child with an autism spectrum disorder, you will interface with many systems: school districts, doctor’s offices, insurance companies, clinics, not to mention specific teachers, therapists, relatives, and friends. Armed with your knowledge of your child, and of ASDs in general, you will become your child’s best advocate.
This will often involve educating others who just don’t get it. This may sometimes be a burden, but try to remember: what you teach someone about ASDs is something that will help not only your child but the next child “on the spectrum” that person encounters. Explaining to the neighbors, the church or synagogue, the lady at the grocery check-out counter, the “regular ed” teacher, the Boy Scout leader…it builds awareness and helps the people in your community begin to understand.
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Sometimes, it is helpful to write up a sheet describing ASD and how it impacts your child. Be sure to include information on personality and strengths, not just areas your child finds challenging. If you know techniques that work with your child –how to gain her attention, signs of an impending meltdown, activities that she finds calming, rewards that she’ll make an extra effort for—include these, sharing your knowledge and helping to insure success. Such a sheet can be modified for teachers, camp counselors, therapists, or whoever may be working with your child. Think of it as a “cheat sheet” that will help someone just coming on board do their best work with and for your child.
Make sure to keep thorough records of test results, medical issues, and educational plans. You may start out with a folder, progress to a binder, and end up with a file cabinet; it is a big and long-term job, but a necessary one. You will be asked for details and need to access information for many years to come. You may sometimes need evidence of what was said or promised when it comes to a fight. Keeping yourself organized will reduce your stress and increase your ability to advocate for your child.