The Journey of Autism Assessment

Recognizing the Signs

My twins were diagnosed with autism in mid-2021, but the assessment and support process started over a year earlier. As an autistic adult, I recognized the early signs of autism in my sons. However, since my diagnosis came in adulthood, I had no experience with early childhood assessments.

To better understand the process, I turned to the internet and support groups. I soon realized that many parents suspected their child was autistic but felt confused about the assessment timeline. This often led to frustration between parents and assessment teams. To help other parents navigate this journey, here are key takeaways from my experience.

Be Patient

One of the most frustrating aspects of assessment is when assessors don’t witness the behaviors you report. Sometimes, I felt like the team thought I was pushing for a diagnosis that wasn’t there. Then, just before Thanksgiving 2021, I had a realization:

  • Assessors spend only a few hours a week with my child.
  • I spend 16–20 waking hours with them every single day.
  • At three appointments per week for one hour, an assessor spends just 2.3% of the time I do with my child each week.

This helped me understand that the assessment process takes time. Its purpose isn’t just to diagnose autism but also to rule out other conditions. While waiting can be frustrating, trust the process and remember that you know your child best.

Write It Down

Since assessors spend limited time with your child, they may not witness key behaviors firsthand. That’s why keeping a record is so important.

Tips for Journaling:

  • Use a simple notebook—it doesn’t have to be fancy.
  • Document behaviors as they happen to ensure accuracy.
  • Include details about what triggered a behavior and how your child reacted.
  • Track patterns to help assessors get a full picture.

Writing things down not only helps with accuracy but also reduces stress. It allows you to vent frustrations and see progress over time.

Keep Advocating for Your Child

You know your child better than anyone. If you feel they need additional support or a second opinion, speak up. The worst that can happen is discovering they don’t need certain services—but the best outcome could be life-changing support.

As an autistic adult, I often wonder how my life might have been different if more had been known about autism when I was younger. At the same time, my own experiences have given me the insight and strength to support my twins as they grow.

A Path Worth Traveling

As you go through the assessment process, remember these key points:

  • Be patient—the team is working to provide the right diagnosis and support.
  • Keep records—documenting behaviors ensures nothing gets overlooked.
  • Advocate for your child—your voice matters in securing the help they need.

It may take time, and your child may not be able to express their gratitude yet, but know this: your advocacy gives them a brighter future. On their behalf, I want to thank you.

FAQs About Autism Assessment

1. How long does the autism assessment process take?

The timeline varies, but it can take several months to a year. Assessors need time to observe behaviors, rule out other conditions, and provide a thorough evaluation.

2. What if my child behaves differently during the assessment?

This is common. Keep a written record of behaviors at home to share with the team. Videos can also be helpful.

3. Can I get a second opinion if I disagree with the results?

Yes! If you feel the assessment didn’t fully capture your child’s needs, seeking a second opinion is always an option.

4. What happens after my child is diagnosed?

Once diagnosed, your child can access support services, therapy, and educational accommodations to help them thrive.

References:

Lacy, J. and Stark, C., (Aug 14 2013). The neuroscience of memory: implications for the courtroom. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4183265/

Learn More About Trapper Shafer’s Work

Trapper Shafer is an autistic adult, father, and founder of UNPUZLD, a clothing brand promoting autism acceptance. 50% of all profits go to autism-related organizations. Learn more about his work here.

Get Professional Support

Dr. Jessica Myszak has over 11 years of experience performing psychological evaluations with children and adults. She offers both in-person and telehealth evaluations. In addition to seeing clients on the Chicago North Shore, she can work with families who reside in Arizona, Colorado, Delaware, Florida, Georgia, Illinois, Missouri, Nebraska, New Hampshire, Nevada, Oklahoma, Tennessee, Texas, Utah, Pennsylvania, Virginia, and North Carolina, Washington DC, Wisconsin, and soon, Alabama and Kentucky! If you are interested in learning more about potentially working with her, you can contact here to get the process started.