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For Parents of Newly Diagnosed Children

1. Obtain a computer, an email account, and an internet connection, if at all possible. There is no faster way of reaching out to other parents, gaining information, and getting your questions answered.

2. Get an intake evaluation from the designated Referral and Evaluation agency for your service area. Contact your designated Referral and Evaluation Agencies by calling Office of Special Education at (503) 378-3700 x2337 or visit: http://www.ode.state.or.us/gradelevel/pre_k/referralcontactsbrochure.pdf (see http://autismoregon.org/content/referral-agency-birth-kindergarten)

3. Join local and national listserves, support groups, and informational groups like:
• POAC-OR list - http://yahoogroups.com/group/poac-or/
• Autism Society of Oregon - http://autismoregon.com
• Autism-Oregon - http://yahoogroups.com/group/autism-oregon

4. Be wary of magic cure-alls and snake oil salesmen.

5. There are two main categories of treatment: MEDICAL and EDUCATIONAL. POAC of Oregon focuses on behavioral education.

EDUCATIONAL Therapies have three main approaches:
A. Behavioral - Applied Behavior Analysis (ABA), Pivotal Response Training (PRT), Discrete Trial (DTT), Lovaas, Precision Teaching
B. Developmental - Structured Teaching (TEACCH), Greenspan’s Floortime, Social Stories
C. Eclectic - A combination of Behavioral and Developmental approaches along with various other complimentary treatments

MEDICAL Therapies have Biological and Drug approaches:
A. Biological: vitamins, supplements, minerals, and more
B. Drug: chelation, anti-yeast therapy, IVIG, secretin, Prozac, and more

6. Choose your teaching methodology. It is important to not waste time on a method by switching around thus not ensuring that you use the method with consistency and get poor results. See pages on Behavior, Developmental, and Eclectic approaches for a more detailed description.

7. Because there are many treatment options available, it is advisable to first consider those with scientific research. This is especially true of educational approaches.

Many of the medical treatments are non-standard and based on trial and error—not double blind, published, peer reviewed scientific studies. Some doctors scoff at some of the diets and treatments because it’s often contrary to conventional medical wisdom. Sometimes you, the non-doctor parent, will have to educate the experienced professional. Strongly consider taking the time to locate and work with physicians who are experienced with your child’s specific neurological disorder and who also network with other doctors in this field. See http://autismoregon.org/providers for a DAN! list of doctors.

8. Do only one new treatment, supplement or drug, at a time and keep records (data) on what is causing changes. Then, be sure to give each approach plenty of time—at least several weeks—to work before passing judgment. It’s okay to try things when you are sure they do no harm to your child and family physically, financially or emotionally.

9. Learn the law and your child's rights. Contact Developmental Disabilities Office, RISE or a local advocate for help on IFSP/IEP goals and services.

10. Consider getting extra evaluations and services from private agencies for home programming, speech and occupational therapy. The state has to provide appropriate but not “all” or the “best” services.

11. Be completely involved in your home program in every aspect, as much as it is possible for you. Detailed knowledge of your child can make a huge difference.

12. Your school district and professionals may not share your beliefs of educational and biological approaches. Try to work on win-win relationships with all people who interface with your child. Point out what teaching techniques work at home and offer any training that you and your team might be receiving in your home program.

If your child is on a special diet, ensure that the school is aware. Bring your own snacks and lunches and try to inform the teachers and school nurse (if one exists) of the specifics of the diet with an easy to read list of foods the child CAN eat and CANNOT eat. Volunteer with the PTA or in the classroom. Once they get to know you, they’ll most likely provide more engaged help for your child.

13. Do not spend all your time and effort on the child with autism at the expense of your marriage, your other children, family and friends. The best treatment for your child is a happy, healthy, and loving family to support them. Your spouse, other children and YOU need love and support as well.

14. There is no single professional you can go to who will manage “all” your child’s issues. You will have to become your child’s expert and case manager.

15. Autism is a marathon. Build a network of support so you don’t have to go at this alone. Many other parents (even grandparents) are dealing with the same emotions and stress.