Five things to do while waiting for an autism evaluation

We have to wait two months for our child’s diagnostic evaluation. How can we prepare? 

This week’s “Got Questions?” answer comes from Lauren Elder, PhD, Autism Speaks assistant director of dissemination science

Unfortunately it’s common for families to have to wait weeks to months for a diagnostic evaluation after a parent, doctor or teacher notices behaviors that indicate a child may be affected by autism spectrum disorder (ASD). And many parents have asked me your question.

Here are five things I recommend you do to prepare:

1. Learn more about autism.

This will help you develop a list of questions for the visit and prepare to take action if your child is diagnosed with ASD. For starters, I highly recommend Autism Speaks 100 Day Kit for Young Children, especially the section on diagnosis, causes and symptoms. Also see the “What is Autism?” section of the Autism Speaks website.

2. Gather your child’s information.

I recommend filling a folder with your child’s medical records and any previous developmental or behavioral evaluations your child has received. You might also want to bring your own notes on your child’s behavior, as you observe it in different places and with different people. It can also help to jot down some thoughts on what you consider to be your child’s strengths and weaknesses. Bring this folder of records and notes with you to the evaluation.

3. Learn what to expect at the evaluation.

Some evaluations are done by a team of specialists, others by a single provider. In general, a developmental pediatrician or psychologist is the best qualified to make a diagnosis. However with training, other medical providers can competently conduct the evaluation. It should involve direct interaction between the provider and your child.

This should include a structured, play-based assessment called the Autism Diagnostic Observation Schedule (ADOS). Your child may also complete one or more cognitive, or “thinking skill” tests. As a parent, you’ll be asked questions about your child’s behavior and development. In addition, you’ll probably fill out one or more “checklists.” It can feel like a lot of questions, to be sure! Just remember that this information helps the professional make the most accurate and helpful diagnosis.

You should have a chance to meet with your child’s evaluation team to discuss the assessment and diagnosis. You should also receive their written report. In all, the evaluation will take at least several hours and more than one appointment to complete. (Also see the “Diagnosis” page of the Autism Speaks website.)

4. Arrange support.

Many parents find the diagnosis process emotional and even a little overwhelming. Rather than go it alone, consider inviting someone you trust to accompany you and help take notes on what was said and make sure your questions get answered.

5. Get the ball rolling on intervention services.

Whether or not your child is diagnosed with autism, the evaluation may reveal developmental delays that would benefit from intervention services such speech, occupational and physical therapy. Your school district or state early intervention program provides such services free of charge to children who need them. However, your child must be evaluated for them separately. So don’t wait for the autism diagnosis to request such an evaluation. Call now. (For local contact information, see the Autism Speaks Resource Guide.) Also see Autism Speaks Individualized Education Program Guide.

We know that this can be a stressful time for you. If you need additional help from a live person, don’t hesitate to call the Autism Speaks Autism Response Team at 888-288-4762 (Español 888-772-9050) or email us at familyservices@autismspeaks.org.