How to Advocate for Your Child if You Think They have Autism

In Minnesota, 1 in 34 8-year-old children are now diagnosed with autism. While it’s a spectrum and every individual is different, autism often affects how people communicate and interact with others. It can also cause children to miss developmental milestones or regress in development, perhaps starting to speak a few words and then stopping.

If you think your child has autism, talk to your pediatrician about your concerns. You may also want to reach out to your school district, as a child can start services through the school before receiving a diagnosis. Your child doesn’t have to be school-age; services are available for infants through high school students.

Here is how you can advocate for your child if you’re concerned they might have autism.

Advocating for an assessment

Prepare a list of concerns

When meeting with school staff, a pediatrician or a mental health clinician, bring in a list of specific concerns about your child’s development or behaviors, including any information from a teacher or a daycare provider. If they don’t share your concerns, you can continue to pursue an assessment through another avenue, like a school, medical provider or mental health provider. 

You can also reach out to your school district because your child can start services through the school before receiving a diagnosis.

Preparing to advocate at an autism evaluation

If you’re referred for an autism assessment, there are several ways to prepare. At Fraser, you will start with an initial assessment.

Pull together medical records and development information

If possible, pull together your family medical history, your child’s medical and school records, and medication information. This can include notes from teachers, therapists, childcare staff and healthcare workers.

Information about an individual’s early development is helpful for autism assessments. According to the American Academy of Pediatrics, “A diagnosis of ASD is ultimately made based on your description of your child's development, plus careful observations of certain behaviors by your pediatrician, autism experts, medical tests, and your child's history.” Some find it helpful to review baby books, medical records, journals, etc., to refresh your memory about your child’s development. Developmental history is also important for adults seeking an autism diagnosis.

If your child has a particular reaction or concerning behavior that is difficult to describe, a brief video may be helpful to share at the assessment. 

Prepare some questions and ask a friend

Prepare some questions beforehand, so you don’t forget to ask about anything. You may also want to invite a family member or friend to attend the assessment with you, so they can provide emotional support and also hear the information being shared.

Advocating at the appointment

Be prepared for a possible diagnosis

Sometimes, an individual is diagnosed at an initial assessment. Along with a diagnosis, you will receive recommendations for resources and appropriate next steps, including intervention recommendations. 

Don’t downplay your concerns, but do include strengths

Describe your concerns about your child as accurately as possible, so your pediatrician understands what’s going on. According to the American Academy of Pediatrics, “Within this partnership you, as the parent, should feel comfortable bringing up any concerns you have about your child's behavior or development — the way he or she plays, learns, speaks and acts. Likewise, your child's pediatrician's role in the partnership is to listen and act on your concerns.”

You’ll also want to share your child’s strengths. “It’s also important to focus on the good things and share what motivates your child,” says Fraser Director of Outpatient and Evaluations Sue Pederson. “This is an important way to advocate for your child, and it gives clinicians ideas about what interventions might best support your child.” 

Initial assessments are less structured

Assessments typically include an interview with the caregiver and time spent with the child.  The structure varies depending on your child’s age. For example, play materials are often used with younger children, and games or conversation are used with older children and adults.  If you have questions about the assessment, ask for clarification so you better understand the process.

Ask about services

Outline to the therapist what you want help with, like challenging behavior, toileting issues or communication concerns. Ask the clinician if there are additional resources available for your family. At Fraser, care coordinators can also connect you with resources inside and outside the organization.

Advocacy after the appointment

You can start services

After the initial assessment, your child can start therapy services, if recommended. Even if your child doesn’t receive an autism diagnosis, a clinician may recommend that your child start services.

Take time to process a diagnosis

If your child is diagnosed with autism, take time to process what you’ve learned. Be gentle with yourself. A diagnosis doesn’t mean you’ve done anything wrong. An autism diagnosis can be a step forward because now you better understand your child and how to help them.

Consider joining a parent or family support group

You may want to join a parent or family support group or consider family or individual therapy, depending on you and your family’s needs. Fraser offers a variety of support groups, as well as family therapy and individual therapy.

Advocacy is an ongoing process

Continue to collaborate with your child’s care team, including doctors and Fraser staff, as you begin therapy services. Share what is helpful, where you need more support and any barriers that interfere with you and your child’s ability to access services. 

Take it one step at a time

Try to approach the process one step at a time. Your child’s needs will change over time, and as a provider of life-long services, Fraser will be here to help you when these changes occur.