Monarch Center for Autism Cleveland Ohio

Post-Diagnosis

Often, the time immediately after the diagnosis26 is a difficult one for families, filled with confusion, anger and despair. These are normal feelings. But there is life after a diagnosis of autism. Life can be rewarding for a child with autism and all the people who have the privilege of knowing the child. While it isn't always easy, you can learn to help your child find the world an interesting and loving place.

Understanding Autism for Dummies (Wiley Publishing, Inc., 2006) by Dr. Stephen M. Shore and Linda G. Rastelli, MA, outlines the following 10 steps families should take after a diagnosis.

  1. Learn and read as much as possible. Although the glut of available information may seem overwhelming, the more you read and discover, the easier it will be to understand new information. However, always consider the source of any information you find. And do not focus exclusively on one intervention or therapy; no one treatment works for everyone. You need to find the right combination for your child.
  2. Network with other families. Families in similar situations often provide the most important support system of all. Get active in the autism community by attending support group meetings and conferences to meet other parents who are going through the same struggles and are happy to share their experiences. Visit ASA's online database, Autism Source, for listings of parent support groups and other organization.
  3. Test, Test, Test. Test your child early to get a baseline picture of where he or she is. A clear picture of your child's biological condition provides a roadmap for treatment and therapies to follow. If you can't afford all of the tests you need up front, prioritize them with your medical providers' help.
  4. Investigate sources of financial aid. Autism can quickly exhaust your resources, but, fortunately, funding and assistance do exist. Financial aid is generally available at the county level for children under the age of 3 (you'll need to apply for the Medicaid waiver). Also, keep good financial records, and avoid using the words "autism" or "PDD-NOS" with insurance companies, especially HMOs, as many exclude autism in their policies. If there is a biological abnormality that's being treated, have the doctor code it as such.
  5. Consider major lifestyle changes. As autism treatment can seriously affect your financial resources, you may have to make major changes (such as changing your job or downsizing your home) or short-term sacrifices to allow for the funds you need to treat your child. Also, if you have a spouse or significant other, you need to establish a division of labor and responsibilities regarding the care of your child. Autism treatment takes sacrifice, but the hard work pays off. Many parents will tell you that the emotional rewards are much more lasting than any hobby or house can bring.
  6. Set up an educational/behavioral program in your home. If you can afford it, a structured one-on-one program focusing on education and behavior works for many children with autism. Make sure the program is reputable and that it shares your expectations and goals. You and your tutor/consultant should both sign a contract stating who is responsible for what.
  7. Begin therapies. You may be referred to other specialists for therapy, including speech, occupational and physical therapy. These therapies will help your child gain communication, social and physical skills. Insurance providers, including Medicaid, often cover the cost.
  8. Address diet and nutrition. Since dietary sensitivities affect many people with autism, consider trying special diets (such as wheat-free/dairy-free) for your child. Based on medical testing and your doctor's recommendations, you should also start your child on vitamin/mineral supplements geared to his/her needs. Be sure to consult with a nutritionist and pediatrician with expertise in autism.
  9. Don't give up. Attitude is everything! Try to be a morale booster for your family and your team of professionals. Educate doctors who are unfamiliar with autism and provide up-to-date information for those who can help. Be patient as many treatments and interventions take time to produce results. Most importantly, remember to laugh and have fun together as a family.
  10. Get out and relax. Make time for yourself. You must take care of yourself to be of any good to your child. Encourage your spouse/significant other to take time to recharge as well.
 

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