Here are some steps to get you going in the right direction when your child is newly diagnosed…
1. Validate your concerns:
If you have concerns about your child’s motor, social/ emotional, cognitive or communication development, investigate them with the following tools:
www.firstsigns.org
www.asqoregon.com
2. Get an Evaluation:
The sooner you get an evaluation, the sooner you can get services from schools, programs, and specialists. In Oregon, you need to get both an educational identification and a medical diagnosis to access all of the potentially available medical, governmental and educational services.
An educational identification qualifies your child for educational and therapeutic resources through your local “Educational Service District” or “ESD.” For children younger than age 5, contact the early intervention specialists that work through your county. For English, click here. En Espanol, click here
For children age 5 and older, contact your local school to request an evaluation.
To pursue a medical diagnosis, which qualifies your child for medically necessary Autism therapies, contact your pediatrician for a referral to an experienced psychologist or developmental pediatrician. A list of providers who evaluate children for autism spectrum disorders in located on the Professional Resource Directory under “Child Diagnosis.”
3. Get Organized:
Manage medical records, assessments, laboratory values and other important data in a binder and have it organized and ready to go for appointments.
4. Get Resources:
The Autism Society of Oregon provides many resources. These resources include Support Groups, a Resource Directory, a Calendar of Events, the “Take a Break on ASO” program and more.
5. Get help with your child’s IEP (Individualized Education Plan):
FACT Oregon helps parents navigate the special education system – for free! They have a free Special Ed helpline, and many online resources on their website at: FACTOregon.org or call 1-888-988-FACT (3228).
If your child is under the age of 5, the child has an IFSP (Individual Family Support Plan).
6. Obtain early therapeutic intervention:
Organize a team of therapists, under the guidance of your primary care provider, pediatrician or an Autism consultant. A good therapist will be able to identify your child’s strengths and challenges and provide detailed recommendations for your child. Early intervention can lead to better outcomes!
Types of professionals to consider:
• Speech pathologist
• Occupational therapist
• Behavioral therapist
7. Find a doctor who listens to your needs and the needs of your child:
A doctor is an important step on the Autism journey.
Your child may need both a knowledgeable primary care doctor and an Autism specialist. You might also need other specialists if you child has other health problems that are commonly found with Autism, such as constipation or sleep difficulties.
Ask your doctor about what kind of treatments are best for your child. Your doctor can be a great advocate in helping you complete the paperwork you need to get your child therapy.
Make sure you tell him/her all of the treatments you are trying out for your child, including complementary and integrative treatments. If you don’t feel like your doctor is knowledgeable about Autism or is listening to what you have to say, it is okay to switch to a different doctor.
8. Address diet:
The foods we eats directly effects the ability of our brains and body to function properly, and with brain and body development in children. Eating a healthy diet will help your child learn and develop the best! Sometimes Autistic people can have strong preferences about food. It’s important to keep offering a good variety of healthy and fresh foods, including lots of fruits and vegetables. Try to avoid processed foods. Consider asking your doctor if taking vitamins would be a good idea. Get some good recipes and experiment with vegetables!
Some people have found a Gluten free/ Casein free (GF/CF) diet to be effective in reducing Autistic symptoms. For information, talk to your child’s doctor.
8. Attend support group meetings:
See our Support & Activity Group listings for all of Oregon and SW Washington at: Support Groups by Region. We list all the support and activity groups that we are aware of throughout Oregon and in SW Washington. There are groups that meet in person and on-line, with groups for parents, siblings, grandparents and child, teen and adults on spectrum.
9. Find Balance:
Keep in mind that advocating for your child is like running a marathon. You need to pace yourself. Balance in your life will benefit everyone.Also, remember to take time for yourself. Participate in activities that help control stress and lift you up. Encourage your child every day and emphasize all of their unique and wonderful qualities.
For more information on children and Autism see the OHSU Doernbecher Children’s Hospital Autism Spectrum HandBook. http://www.ohsu.edu/xd/health/child-development-and-rehabilitation-center/clinics-and-programs/cdrc-portland-programs/autism/upload/ASD-Handbook.pdf