Getting a formal evaluation

What if my health care provider indicates that I need a follow-up visit with a specialist?

Your health care provider is simply telling you that your child needs a more formal evaluation to learn more about how he or she is learning to talk, interact, act, play, learn, and move. This will be a much longer visit. It is typically done by a specialist in the area of child development, but may involve several different specialists. Read more about evaluations including costs and types of assessments in Autism Speaks First Concern to Action.

What sort of specialist?

There are many routes to a formal evaluation:

• You can request an evaluation by public Early Intervention and Education offices. The contact information for these offices changes depending on where you live, but can be found on the Autism Speaks website.
• Another route would be a developmental health assessment by a pediatrician, psychologist, neurologist, or other specialist. This may or may not be covered by insurance, but you should get a referral from your primary care provider to be safe.
• You may also be referred to a private allied health specialist like a speech therapist, occupational therapist, or physical therapist who can evaluate your child.

Many parents choose to follow multiple routes at the same time. For the most part though, information in this tool kit pertains to evaluations that are provided by the public health and education systems. 

What are my rights?

Unfortunately, it is common for families to have to wait weeks or months before seeing a specialist. While you are waiting for an appointment with a specialist, there are some things that you may want to know:

The following piece is “time critical” as early intervention services through the public education or health system are only available until age three in most states.

If your child is under the age of 36 months:

• He or she is entitled to an evaluation through your state’s office of Early Intervention, also referred to as “Birth to Three” or “Part C.”
• Federal law requires the local early intervention agency to perform a free assessment to determine if any child has a disability.
• The agency is required to complete an initial evaluation no later than 45 days after receiving written consent from you to assess your child.

If your child is 36 months or older:

• He or she can receive an evaluation through the school district.
• Federal law requires the local education agency to perform a free assessment to determine if any child between 36 months and 21 years of age has a disability.
• The initial evaluation must be completed no later than 60 days after receiving written consent from you to assess your child.

What does the typical evaluation through the early intervention system look like?

Once your child is referred, your early intervention office will assign an initial service coordinator to work with you and your family. He or she will talk with you about your concerns about your child's development. The coordinator will also review your family rights, make sure you understand them, and help you arrange for your child’s evaluation.

If your child's evaluation shows that he or she is eligible for the state’s early intervention program, your initial service coordinator will set up a meeting to work on your Individualized Family Service Plan (IFSP), a written plan for providing early intervention services to your child. The job of your initial service coordinator is to help you with all the steps leading up to your first IFSP meeting.

The IFSP is a very important document, and you, as parents, are important members of the team that develops it. At your IFSP meeting, you may want to be prepared to discuss how you describe your child to others, what you need help with, and what you’d like more information about.