Ten Tips When Advocating for Your Child with Autism or Asperger's Syndrome

Eileen Bailey Health Guide
  • Tips for Advocating for Your Child with Autism or Asperger's Syndrome

    When you have a child with special needs, such as autism or Asperger's syndrome, you are going to spend time talking with teachers and other school personnel, doctors and therapists. To best help your child, you need to know how to stand up for his rights without creating enemies. The following tips should help:


    Keep accurate records. Keep a folder or binder with all of your child's medical and educational records. You might want to start a notebook and have doctors, therapists and other medical providers jot down the date they saw your child and a short description of what happened. Give the notebook to medical providers prior to the visit and take it with you when you leave and write down a summary when you talk with them on the phone. Keep a separate notebook to record a summary of all meetings with teachers or your child's IEP or Section 504 team. Having all of the information in one place gives you the information you need at your fingertips.

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    Before calling a medical or educational professional, write down the questions you want to ask. Too often, once you hang up the phone, the response is, "Oh, I forgot to ask..." By spending a few minutes preparing for the phone call you are assured of talking about all of your concerns.


    Ask for information on community resources. No matter what disability your child has, there is a national organization that can provide you with an immense amount of information and referrals to local resources. But school personnel, therapists and doctors may have additional resources. They may be aware of local support groups and local organizations. Asking all the people you come in contact with provides you with an extensive list of resources you can call for information and support.


    Be prepared when going for an appointment. If you have questions, write them in your notebook before so you won't forget. Be on time for the appointment and bring any medical or educational records that were requested.


    When talking to a medical professional, be brief and specific. You usually have a limited amount of time, don't spend it telling off-topic stories, keep to the facts. If you feel you haven't been given adequate answers, say so and repeat your question or concern.


    When working with your child's school, think of the school as your partner rather than your enemy. It is easy to become frustrated, especially if you feel the school is not cooperating or not providing accommodations you think are necessary but when you become confrontational, the entire process can break down. Instead, remain calm and try to work together to find solutions.


    Bring all relevant information to school meetings. Holding back information is not in your child's best interest. If you want the school to cooperate and provide all necessary accommodations, you need to supply them with all of the information.


    If you are feeling overwhelmed or just need some additional support, bring a friend or relative with you. Schools should allow you to have someone in the meeting with you, even if he or she is there to take notes or provide moral support. Doctors and therapists should allow someone you request into the room as an observer.


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    If you are confused or don't understand something either at a medical professional's office or a school meeting, speak up and say you don't understand. Professionals sometimes use industry language or acronyms that they assume you understand.  Asking for clarification, examples or demonstrations may help you understand and since you are all working to the benefit of your child, it is imperative you understand what is being said and recommended.


    As soon as your child is able, teach him self-advocacy skills. Bring him with you to school meetings and talk about what happened after. Include him in discussions with medical professionals. This will help prepare him for the day when he will need to complete these tasks on his own or with minimal support.


    Share your knowledge of your child. Understanding how your child learns or what certain gestures means is probably natural to you but may not be to teachers or therapists. Giving them tips on how to handle melt-downs or how to motivate your child will help them be more successful. Don't assume because they are professionals they know what is best for your child because every child on the autism spectrum is unique.




Published On: August 29, 2011