The journey of getting a diagnosis of autism spectrum disorder (ASD) can be an overwhelming process for families. If you are awaiting an initial or a re-evaluation appointment, we want to help you know what to expect in your upcoming diagnostic appointments, as well as share tips to help you prepare for those appointments!
Once you have your initial evaluation scheduled with a licensed psychologist, developmental pediatrician, neurologist, or other qualified provider, you might be asking, “what can we do while we wait for our first appointment?”
Prepare for Your Autism Evaluation Appointment
- If you haven’t already, download the CDC’s free milestone tracker app or just use a pen and paper to record all your child’s critical developmental milestones information such as when he/she was able to sit, stand, crawl, walk, understand words, speak first words, and when he/she was toilet trained during the day and night. Milestone information can be very helpful to your provider in understanding what your child’s first years looked like, if your child was delayed in meeting their milestones, and how that could be indicative of developmental delays and associated diagnoses.
- If your child is exhibiting any behaviors that are of concern to you or your family, take a quick video of them when these behaviors happen. This can allow you to be able to show your provider what you are observing during the evaluations. Sometimes certain behaviors might only happen at home or in the community, so it will be important for your provider to be aware of the behaviors you are concerned about and what they look like in real life.
- Write down any questions you have about autism, the diagnostic process, or what to do following an evaluation. If you wait until the date of your appointment, you might not remember everything you want to ask, so creating a list of questions you have ahead of time will be extremely helpful for you!
- Take some time to learn more about autism by reviewing the CDC website or recent MeBe articles about autism (What is ASD? / What are common signs of ASD in children?), so you can be prepared to answer questions your provider might have for you such as how your child communicates, what behaviors he/she exhibits, and what his/her social skills look like.
What to Expect During the Evaluation
Every provider has a slightly different process for evaluating children for autism spectrum disorder, but your first session is usually what is considered an “intake” session. This session often occurs virtually or in-person and can last anywhere from 1-2 hours in duration. This appointment helps your provider understand your child’s needs, your concerns, and what tests will need to be administered during the evaluation.
Before the intake session occurs, your provider will probably ask you to complete paperwork about your child’s developmental history, which will then be reviewed in detail during the intake session. Provide as many details and examples as possible on those intake forms to facilitate a deep understanding of your child and your concerns about your child.
Areas that might be discussed during the intake session include autism related-symptoms, medical history, family history, other therapies attended, education information, your child’s strengths and weaknesses, and recent life changes or significant life events.
We know paperwork can seem daunting sometimes, but try to set aside an hour or so. It may also be helpful to complete it together with another caregiver or involved family member, so no information is missed.
Direct Testing and Observation
After the intake session is complete, your provider will then schedule a second appointment which will involve direct testing of your child. Depending on your child’s age and whether this is a new or re-evaluation, testing can last several hours. Testing may need to be scheduled across 1-2 sessions depending on how well your child handles the new environment.
Tests that could be administered include the Autism Diagnostic Observation Schedule (ADOS®-2), intelligence tests, social skills tests, questionnaires, play observations, and developmental or adaptive tests. Your provider may email you and/or your child’s teachers some questionnaires to complete as well. These will be critical parts of the evaluations, so complete them as quickly as possible!
Testing sessions typically occur in-person and are performed directly by the licensed provider. During testing sessions, your provider will give you (the caregiver/parent) specific instructions to follow. For example, your provider may ask you to just observe and not interact with your child; however, for some tests, your provider may also request that you ask your child to do certain things (e.g., call your child’s name or ask them to bring you an item).
Additionally, for some parts of an evaluation, you might not be able to be present in the room due to the sensitivity of the material (for example, intelligence testing). If you have questions during testing, bring some paper and a pen with you to jot those down so you can debrief with your provider after the testing is complete.
Most providers will not give you any formal results following your testing session as they want to look at all the sources of information together before making a final decision, so try not to be discouraged – this is a normal part of the diagnostic process!
Results and Feedback
The final stage of the diagnostic process is the results or feedback session. This session could occur in person or virtually and may last 1-2 hours. Once your provider has summarized all the results of the testing, they will determine if your child meets the criteria for autism spectrum disorder, as well as what symptoms he/she exhibits that qualify him/her to meet criteria for the diagnosis.
This appointment will usually be scheduled approximately 1-2 weeks after testing. You will typically be provided with an extensive written report that covers all the information gathered during the intake and testing sessions. Your provider will also usually suggest that you share the results of the evaluation with other therapy providers, your child’s school (if applicable), and your child’s pediatrician/ other medical personnel involved in your child’s care.
Take Time to Process the Diagnosis
A medical diagnosis of autism can help you better understand your child, learn how to meet their unique needs, and enable insurance coverage for autism therapy services. However, receiving the diagnosis of autism spectrum disorder for your child can also be a lot to process, so make sure to take some time for yourself.
For more helpful tips, read “An Autism Diagnosis & Beyond” and “Explaining Autism to Friends and Family” on the MeBe blog.
Re-evaluation Every 3 Years
Your diagnostic report should be valid for approximately 3 years. After that time, many insurance companies may require a re-evaluation for autism for autism-related services to continue to be covered by insurance.
Be sure to schedule a diagnostic re-evaluation appointment at least 2-3 months before your child’s current diagnostic report expires to avoid any gap in care from your therapy service providers.
Autism Diagnostic Services at MeBe
MeBe provides autism evaluation & diagnostic services in our three Texas learning center locations in Allen, Round Rock, and Houston. Read more about our diagnostic services or contact us to get your child scheduled for an evaluation today!