Here is another great piece from Trapper Shafer, an autistic adult and father to both neurotypical and autistic children. Enjoy!
The Journey of Assessment
My twins were diagnosed with autism in mid-2021. However, the assessment and support process began more than a year earlier. As an autistic adult, I saw from a very early age, the trait of autism my sons were exhibiting. Despite being autistic myself, I had no point of reference for early childhood assessment because my autism was discovered as an adult. This sparked me getting onto the internet and hitting up all my trusted support groups for information on what assessment looked like. I found out that I was not alone. There were many parents that suspected their child was autistic. Yet they were unsure of how long it would take to get a diagnosis. This led to quite a lot of frustration between parents and assessment teams. To help any other parents going through the assessment process I wanted to share some key takeaways that I learned from the process with my twins
Nothing can be more frustrating than when the assessor isn’t there to see the behaviors you are reporting and can’t re-enact in front of them. At times, I felt like the members of the assessment team thought I was pushing for them to be diagnosed with something they didn’t actually have. Then just before thanksgiving of 2021, I had this epiphany. The assessors only spend a couple hours a day a few times a week with my children. I spend 16-20 conscious hours with them everyday. Just throwing some numbers out there but at 3 appointments per week for a 1 hour session the assessor spend only 2.3% of the time with my child that I spend with my child every week. With that information, my tip here is to be patient. You spend far more time with your child so you know your child that much better. The assessment process is made to determine not only if your child does have autism, but also determine if there is potential for another issue that should be evaluated as well. Have patience and trust yourself as well as the assessment team. They are just taking the time to make sure your little one has all the supports they may need.
Write It Down
As I mentioned above, the assessors spend a fraction of the time with your child that you do. Naturally this means you will see much more evidential behaviors than they will. Human memory is a fallible thing, many studies have shown that the details of memories change over time (Lacy & Stark, 2013). Because they can change, it is important to keep a journal of your little one’s behaviors. It doesn’t have to be anything fancy, I used an old composition book for my twins. Journaling those behaviors that may be indicating autism, will help make sure you can relay the most accurate information possible to the assessors. Writing it down also has the added benefit of helping manage your frustrations. Writing the event down is a form of venting and will help reduce your feelings over the incident. Reduced stress, fear, or frustration will keep you at the peak of your mental game and help you to support your child to the best of your abilities.
Whatever happens, you know your child best. If you feel you need a second opinion or additional services. Speak up and make your concerns known. The worst that could happen is you discover your child may not need certain support. On the plus side, your advocacy might be just what it takes for your child to get the assistance that helps them make a breakthrough. I speak this from experience. I often wonder, if more was known about autism, and my parents were able to get those supports for me how different my life may have been. At the same time, it was my hurdles that gave me the strength I have today and gave me the insight on how to support my twins as they grow.
A Path Worth Traveling
As you continue through the assessment process, remember to keep these tips in mind. Be patient as the different members of your child’s treatment team do their part. It may take time, and your child may not be able to express their gratitude yet, but on their behalf, I would like to thank you. Your advocacy will give them a brighter future with more opportunities.
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/
Trapper Shafer is an adult with autism and the father to five wonderful children, of whom 2 are autistic as well. He is also the founder of UNPUZLD, a clothing brand promoting autism acceptance and supporting autism by donating 50% of all profits back to various autism foundations. If you are interested in learning more about Trapper and his work, you can visit his website here: https://unpuzld.wordpress.com
Dr. Jessica Myszak has had 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 is able to 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 visit her website here or email her here to get the process started.