Tips and Suggestions for Families
- Establish a Division of Responsibility
If you are lucky enough to have a spouse, significant other, family member, or friend that is willing to lend a hand, establish a division of responsibility. There are many areas that require work such as an ABA program, special diets, vitamin and mineral supplementation, dealing with school districts, and communication with doctors and nutritionists to name a few. All of these areas take a large amount of time initially, and a substantial amount of time on an on-going basis. If you are on your own, reach out to family and friends for possible assistance. One spouse may become an expert in the medical/nutritional areas, and the other may become the expert at dealing with the school system, Medicaid, and other services. It may be impossible for both spouses to work on all areas at the same time.
- Never Mention the Words Autism or PDD/NOS with HMO's or Insurance Companies
If you are treating biological abnormalities such as a yeast overgrowth, abnormal immune markers, or diarrhea, have the doctor code the treatment as such. There is a much better chance of reimbursement or payment for items that are coded this way. Many HMO's specifically exclude AUTISM in their policies. If your child has chronic diarrhea, they deserve treatment like a typical child would get. Do not let a medical professional tell you these abnormalities are "just a part of autism". They are serious biological conditions that deserve attention and vigorous treatment.
- Immediately Find a Doctor and a Nutritionist that are Experts in Autism
Do not settle for professionals that are familiar with autism or have a few patients that are autistic. There are an increasingly large number of doctors and health care providers that are very knowledgeable in the most up-to-date treatments and protocols. Do not be frustrated or dwell on a healthcare professional who tells you the situation is hopeless and nothing can be done. Immediately move on to another who shares your attitude that the underlying biological abnormalities, if corrected, may help your child improve and enable other therapies to be more effective. See the DAN! Doctor List
- Develop a List of Medical Tests and Prioritize Them
Work with your healthcare providers to develop a list of tests to establish a baseline for your child. Prioritize the tests in the event that not all may be affordable initially. A healthcare provider that is an expert in autism will be able to help you with this and recommend certain labs. See our Tips for Dealing with Doctors Page
- Begin Reading and Bookmarking Sites on the Internet
If you do not have a computer and internet access, get them. If you do not have them available and money is an issue, check into getting a used computer(1-2 years old) and free internet access. A two year old computer will work just fine and there are now many sources of free access. Start bookmarking the key sites. See our General Resources Page. Join some of the internet discussion groups. Some good ones include the Me List which focuses on ABA, and Recovered Kids on E-Groups which is a group of parents of recovered kids or kids on the road to recovery. In addition, there are some excellent chat rooms with Dr. Goldberg, M.D. and Reed Martin J.D., special education advocate. See their sites for schedules.
- Begin subscribing to the different autism related organizations and newsletters
Some of the first should be ARI Newsletter, ANDI, DDR, CAN! (Cure Autism Now!), and Unlocking Autism. See this link for a complete list. Most charge a very nominal fee and are worth far more than the $25 they usually charge.
- Consider attending an upcoming autism conference, preferably one that is biologically oriented
The annual DAN! Conference and the annual Biological Conferences are an excellent start. If this is not possible purchase the audio tapes. See the following links:
Upcoming Conferences
- As you clean up and possibly restrict the diet of your child, do the same for yourself
Try to find time to exercise, to eat right and to improve your health where possible. Autism will not only drain you financially, but it will drain you physically. It will deteriorate your health if you do not take proactive steps to improve your lifestyle. An excellent general book is Kenneth Bock's Road to Immunity. Many of the other well known authors such as Weil, Null, Chopra are worth reading also. As a result, both you and your child will benefit.
- Begin networking with other families
Start a toy and reinforcer rotation program with other families who do ABA or other therapies. Rotate toys and reinforcers among families to save money. Shop at the thrift stores, and shop when they have a half-price sale. Share books, and take advantage of lending libraries. Make book purchase requests at your local library. Point out that many of the autism books are not "obscure" readings but quite desired by many local families with special needs kids.
- Help other families of newly diagnosed kids
If you are a couple of years into your child's progress, and things seem to be going well, try to reach out to others from time to time, as others may have done for you initially.
Back to the Tips Page
The above list was reprinted with permission from AutismInfo.com, thank you.