Navigating the Autism (ASD) Evaluation Journey: A Parent's Guide to Preparedness and Next Steps

As a parent, your child is your world. You watch them grow, learn, and develop with awe and wonder. But what happens when you notice that some things that may be awry in their development and appear to be red flags of an Autism Spectrum Disorder (ASD)? It can be a challenging and emotional experience to realize that your child may be demonstrating behaviors typical of children diagnosed with Autism. However, the good news is that you are not alone, and there are steps you can take to prepare for an ASD evaluation and navigate the journey ahead with care and support.

Why Should I Seek a Formal Diagnosis?

Going down a road you never considered and thinking about your child’s upcoming appointment can feel stressful, and it is perfectly normal to experience many mixed feelings during this time. Perhaps your friends and family members have even shared opinions on what you should do next. However, each family’s journey is personal and individual, and as your child’s parent, you must follow the path that feels right for you.

But, if you’ve decided to move toward an evaluation and diagnosis with a pediatric neurologist, developmental pediatrician, or child psychiatrist, be encouraged that as hard as this time is, a diagnosis can help you:

• Communicate more clearly with caregivers, teachers, and family members about your child’s needs.

• Seek greater resources to help your child progress. There may be support programs that the diagnosis opens up for your child.

• Become more equipped and educated so you can be your child’s best advocate.

How can I Prepare for my Child’s Autism Evaluation?

Preparing for your child's autism evaluation can help ensure the process is as comprehensive and accurate as possible. Here are some recommendations on how to prepare for your child's autism evaluation:

1. Compile relevant information. Gather all pertinent information about your child's developmental history, behaviors, and concerns. This can include information about your child's speech and language development, social interactions, play skills, and developmental milestones. It’s a good idea to jot down your thoughts before the appointment so you leave confident that you shared everything you intended with the doctor. Complete any required forms or questionnaires in advance, as each question provides essential information to the evaluator.

2. Prepare your child. Depending on your child's age and developmental level, there may be steps you can take to prepare them for the evaluation. For example, use age-appropriate language to explain to your child what to expect in the assessment to reduce potential anxiety about the process. Bringing along a special toy or familiar item for your child to share with the evaluator may also help your child feel more comfortable.

3. Bring a support person. Consider bringing a support person, such as a spouse, family member, or friend to the evaluation for emotional support, assistance in taking notes, and remembering important information.

4. Be open and honest. During the evaluation and in all your paperwork, be open and honest about your child's behaviors and developmental history and your concerns. Providing accurate and detailed information can significantly aid the diagnostic process. Also, remember that an evaluator is not trying to judge your parenting or education choices by asking questions. They are simply attempting to build a baseline picture to guide the next steps to help your child.

The evaluation process, although for your child’s well-being, can be emotional and stressful, so don’t forget to take care of yourself as well. Seek support from friends, family, or a therapist, and practice self-care to manage any stress or anxiety you may be experiencing.

What Should I Do After an ASD Evaluation?

You made it through a difficult appointment, and you may have received confirmation of your thoughts with an ASD diagnosis, or the evaluating doctor may lean towards a different direction, like a Social Communication Disorder (SCD) or another primary diagnosis. After your evaluation appointment, here are some next steps:

1. Follow up with any other recommended specialists or appointments. Your child’s evaluating doctor may need input from other specialists to make a conclusive diagnosis or offer the best recommendations.

2. Understand the results. Evaluation reports can be complicated or may contain unfamiliar terminologies. Your follow-up appointment is an opportunity to gain as much understanding of the diagnosis and any other provided findings or recommendations. Any question you have is a valid one, so ask away.

3. Seek further information. Research and learn more about ASD to understand your child's diagnosis better. Ask the evaluator for resources, or if your child is already receiving therapy interventions, ask your child’s therapists to point you toward credible information. Educate yourself about the characteristics, challenges, and strengths associated with ASD and the available treatment options and interventions.

4. Discuss treatment options. Discuss with the evaluating professional the recommended treatment options for your child. Recommendations may include speech and language therapy, occupational therapy, behavioral interventions, social skills training, educational supports, and other interventions tailored to your child's needs. In addition, the State of Illinois offers free early intervention services for children birth-three, and each school district provides educational support services for children after their third birthday.

5. Find community support groups. Living in a metropolitan area like Chicago means you have many options for support. The University of Illinois at Chicago has a comprehensive list of many local state-supported or private support options to help parents of children with special needs. There is power in finding community support and in the stories of other parents who have walked the same journey.

6. Keep open lines of communication with your child's caregivers. These people include family members with active roles in your child’s life as well as teachers, therapists, and others who want to help your child succeed. Collaborate with them to ensure consistency in the implementation of any treatment plans and address any concerns or challenges that arise.

Take things one step at a time. Decide the priority services and interventions your child needs and begin there, and If you don’t know where to start, ask your current providers or evaluating doctor for guidance.

What lies ahead?

The journey of parenting a child with autism spectrum disorder (ASD) can be challenging but also immensely rewarding. Remember that each child with ASD is unique, and progress may happen at different rates. Therefore, being patient, compassionate, and understanding is important as you support your child on their journey. Celebrate their strengths, seek help when needed, and remember that you are not alone. With the support of caring therapists, doctors, teachers, and your community, you can discover joy on the journey and even become an encouragement to another parent walking your same path.

If you live in the Chicagoland area and want more information on speech-language therapy or to schedule an evaluation, contact BMS Pediatric Therapy Group.