What to Expect from a Neurodevelopmental Evaluation

Going through a neurodevelopmental evaluation can be extremely confusing and scary. You rarely get information on what you should be expecting and most families end up feeling really overwhelmed. Knowing what to expect before, during, and after the evaluation can help ease some of the anxiety and uncertainty. In this post, we will walk you through each stage of the neurodevelopmental autism evaluation. Keep in mind that every agency does this process a little differently. Don’t forget to download the checklist at the end so that you have that handy!

Before the Evaluation

Okay, let’s start with what you should expect before the evaluation even happens. The process usually begins with an initial consultation with a healthcare provider, like a pediatrician, psychologist, or other developmental specialist such as an Early Intervention provider. During this appointment, you will discuss your concerns about your child's development and any behaviors that may be characteristics of autism.

Before the evaluation, you should gather all of your child’s medical records and have them ready to go. Save them all in one place, like a binder or a folder. This early organization will go a long way and you will be glad you took the time now! You will be referencing these records frequently.

The healthcare provider will first gather information. You may be asked to complete questionnaires or surveys about your child’s development, behavior, and medical history. It is VERY important to give detailed and accurate info at this time! This will help the evaluation run smoothly.

Finally, you should prepare a list of questions or concerns that you plan to discuss with the evaluator. Writing them down will help because you may forget during the appointment. We suggest keeping a notebook or notepad with all of your records so that you have everything in one place. Write down ALL of your questions, even the obvious ones. Then, make a star, underline, or highlight the questions you absolutely want to get answered by the evaluation professional.

You will go into that appointment prepared and ready!

During the Evaluation:

You’re at the evaluation appointment. The first step may either be be a comprehensive assessment by a team of professionals, including psychologists, pediatricians, speech therapists, or special educators. They may complete a test called an ADOS, which stands for Autism Diagnostic Observation Schedule and is done by a trained ADOS administrator and someone that the child has interacted with. The comprehensive assessment may cover a wide range of developmental areas, such as cognitive abilities, language skills, social interaction, and sensory processing. They may be asking your child to do certain tasks, answer specific questions, or see if they understand specific social cues. The ADOS is a series of semi-structured tasks to see how the child initiates social bids for attention, how they communicate their needs, how they engage in play with various toys, and general level of engagement with each task item. The parent’s role is mostly to observe, however, the ADOS administrator may ask the parent to participate in specific ways and at certain points during the evaluation.

You should receive a full written report of the assessment and findings. Make sure you ask for a copy for your records. Keep this copy in your binder/folder that we suggested.

The next step may be an observation. The evaluator will observe your child’s behavior, interactions, play skills (if they are a younger child), and more. They might ask your child to complete structured tasks (tasks that have an obvious beginning and an end, like a puzzle or shape sorter), or see how they engage in open-ended tasks (tasks that don’t have an obvious beginning and end, like playing with cars or a dollhouse). They will also be observing how your child engages socially.

Your child may undergo a series of standardized tests to assess their cognitive abilities or language skills. These tests will give the evaluator objective “scores” that help with the diagnostic process. This will also help them see your child’s strengths and areas of support, which will help with their recommendations!

Typically, there will also be a parent interview component. The evaluator will likely ask you (along with any other relevant caregiver, such as a partner or spouse, if they are present) a series of very specific questions about your child’s behavior, what concerns you have, their medical history, etc. They may also ask questions about family dynamics, family history, or other personal questions. Remember, these questions are posed to give the evaluator a complete history. It’s important to be honest during this process.

After the Evaluation:

When the evaluation is completed, you may meet with the evaluator and they will review their observations and findings. In many cases, the follow-up appointment will be scheduled separately and possibly several weeks after the initial assessment. Regardless of when it occurs, this feedback session will give you the opportunity to ask questions, get clarification, and gain a better understanding of the assessment. Have those questions ready!

Depending on the findings, your child may then receive a diagnosis of autism spectrum disorder or another developmental disorder. In some instances, there is not enough evidence to determine a specific diagnosis, and the provider may recommend that you return for another evaluation in 6-12 months. The evaluation team will give you recommendations for supports (e.g., Occupational Therapy, Speech Therapy, Applied Behavior Analysis).

In case no one says this to you directly, please remember this:

Your child is still your child.

There is nothing about the diagnosis that automatically changes how funny, wonderful, silly, or sweet your child is. They are still the same child when you leave the evaluation. A diagnosis of autism is not an illness. It changes nothing about them. A diagnosis will simply help you and your family better understand them - understand their learning style, interaction style, or communication style. Remember that you, as the parent, will play a crucial role in your child’s success. If you believe in them, they will suceed.

That being said, many parents do experience stages of grief, fear, or other emotions. This is very common and normal. You may feel worried about your child’s future. Allow space for these emotions.

You may work closely with your child’s providers to help them in their areas of need. For example, a speech therapist may work with your child to communicate on an iPad device, if they determine that it will be helpful. If your child has sensory needs, the occupational therapist may recommend different sensory activities to help regulate them. Each team should be equally looking at your child’s strengths and always adapt their methods to the way your child learns best!

If something does not feel right, speak up. Be an advocate for your child. Seek support from advocacy groups, parent networks, or any other online community.

Navigating a neurodevelopmental autism evaluation can be a daunting experience, but being informed and prepared can make the process more manageable. Remember that you are in control!

By understanding what to expect before, during, and after the evaluation, you can actively participate in your child's assessment and advocate effectively for their needs. You are not alone on this journey – there are resources, support networks, and professionals available to help you every step of the way.

That was a lot of information! Download our free checklist below to help you remember the steps.