One of the first things parents should consider doing is to join a support group. By meeting and talking with other individuals whose loved ones have autism, you will receive support, information and gain networking opportunities that can help you and your family. You may learn from others how to organize your records, navigate the system, cope with and solve problems. Encourage your family members to join a support group. This is a great opportunity to connect with others and realize that you are not alone. Learning from others who have “been there” can also save you valuable time, as you’re not forced to reinvent the wheel.
Learn as Much as You Can. You and your loved one with autism know best what you need. Ask for help when you are unsure. Get a second opinion if you are not happy and comfortable with the professionals in your life. When possible attend conferences and workshops. Stick with scientific/evidence-based information. It will be the safest in the long run and you won’t spend money unnecessarily on methods that won’t work, and in some cases could be harmful. Join an e-list such as www.ahaNY.org or Autism_NY_News@yahoogroups.com.
Advocate: Be a Squeaky Wheel. Know your rights: you are your child’s best advocate. Learn as much as you can about special education law, ADA, civil rights law, 504, etc. (see our suggested resources at the end of this article). Remember: If you don’t know your rights, then you don’t have any. Find a good service coordinator or education consultant (depending on age and services) to help you navigate the system. Don’t give up when the system seems to be giving you a hard time.
Keep Organized Medical and Educational Records. When you apply for services, it is much easier if you have the documents required to show that the developmental disability is a long-standing problem that affected the person before age 22. If your loved one with autism is taking any medication, keep a list of what he or she is taking and log how he or she is responding. This is important information to share with doctors and it is useful for the individual’s medical history for other service providers in the future.
Plan for the Future. Be sure to plan early to meet the future needs of your family member. Being realistic is very important. Seek the services of a professional who has experience with special needs planning. If your family member is receiving services, involve your other family members to be sure they are knowledgeable and informed. Transitioning to adulthood, particularly, is a complex, multi-faceted process. There are excellent workshops and websites for transition and it’s important to understand the process inside and out, including SSI, guardianship, OMRDD services, college and vocational programs.
Take Care of Yourself. This will be a long road and you must take care of yourself in order to take care of others. Take advantage of respite care when you can. Reach out to family and friends, and don’t be afraid to ask for help. If you don’t have anyone to reach out to, think about counseling for yourself to get the support you need.
Help Your Family Members Feel Good About Themselves. Emphasize the positives in your family member with autism and focus on strengths. Give your loved one with autism as much information as he or she can understand about the diagnosis as early as possible. Insight into themselves and a high self-esteem are valuable to enable them to advocate for themselves and be the best that they can be.
As the mother of an adult on the autism spectrum and an effective parent advocate, Bernice Polinsky has learned a lot on her journey to access services and supports to enhance the quality of life for her entire family. Bernice, whose son receives services through the YAI/NIPD Network, graciously shared these tips to help other families find information, support and greater peace of mind. Bernice is a board member of AHA, is involved with adult issues, and is editor of AHA’s newsletter: On the Spectrum.
Thank you to YAI/NIPD for permission to use this article, published in the first issue of their newsletter, Autism Matters, also found on www.yai.org. This article was also published in the Fall 2008 issue of On the Spectrum.