Getting Ready for an Autism Assessment

Question:

We’ve got an ASD evaluation coming up next week for my 6 year old, and I am super duper nervous! 1/3 that she’ll mask effectively, 1/3 that she will “hard no” refuse to participate, and 1/3 just all the unknown! Words of advice/wisdom/information?

Response:

As a parent, preparing for your child’s autism spectrum disorder (ASD) evaluation can feel like a big, sometimes overwhelming step. You may be wondering what the process will look like, how to prepare, and what to expect. I’m here to walk you through it, sharing insights to help you feel more informed and at ease.

The Initial Steps: Gathering Background Information

The evaluation usually begins with gathering a comprehensive background on your child’s development. You’ll likely be asked to provide details about your child’s early milestones, their behavior at home and in school, and any concerns you’ve noticed. This might include filling out questionnaires and/or participating in live interviews with the assessor. In one of my kids’ autism assessments, this diagnostic parent interview happened virtually before the appointment. In another, it happened live during the scheduled appointment itself. This background information and parental perspective is crucial because it all helps the evaluators understand your child’s unique strengths and challenges, beyond what they can see in a short assessment. 

Good to know:

- Be prepared to discuss your child's developmental history, including milestones and any behaviors that stood out to you. You may need to look back at notes, emails, or photos on your phone to determine when they began speaking, moving, toileting, and sleeping with different milestones.

- You might be asked to fill out forms or participate in live interviews to provide a fuller picture of your child’s experiences (or both!). Either way, it typically takes 60-90 minutes to complete this comprehensive background.

- This is a crucial place where an informed and prepared parent reporter can make a big difference in the course of the assessment. 

The Evaluation Process: What It Looks Like

The evaluation itself typically involves a series of observations, assessments, and interviews with both you and your child. Depending on the setting, this might be done by a single clinician or a team of specialists, including psychologists, speech therapists, and occupational therapists.

Your child might engage in a variety of tasks that assess different areas of development, such as communication skills, social interactions, and play behaviors. These tasks are designed to be engaging and are often presented as games or activities, and the goal is to make the experience as comfortable as possible for your child. That said, clinics may not be well-informed about demand avoidance or trauma and the possible avoidance behaviors or “noncompliance” behaviors that may result. Nonetheless, they want for the assessment to be pleasant and fun for your child, and so you may need to step into an advocacy role to help them understand the best ways to make this possible.

Here’s the important thing: A good assessor will take in all the information – the compliance, the anxiety, the resistance, and the “hard no’s” – as clues to discover more about what makes your specific, unique kiddo tick. Everything is data. A comprehensive assessment is looking at so much more than how they complete pre-determined activities. Good assessors are also very much aware of the way autistic kids mask and can determine patterns to the masking behaviors. 

It’s absolutely true that many parents have struggled to find an assessor who can take a wide and comprehensive view of autism to see beyond the masking, so this is a real and understandable fear. At the same time, my deep hope is that more and more assessors are including autistic masking strategies in their evidence for autism, not as evidence against.

Let’s walk through the typical elements of an autism evaluation, and then we will dive into some places where you can step more firmly into a low-demand advocacy role. The goal is to meet your own nervousness with information and options and to meet your child’s potential struggles with advocacy and structural shifts.

Elements Of A “Typical” Autism Evaluation

During the evaluation, your child may undergo several specific assessments that help the evaluators gather a clear picture of their development and behavior. Here are some of the most common assessments used:

• Autism Diagnostic Observation Schedule (ADOS) - The ADOS is one of the most widely used tools for diagnosing autism. It’s a structured assessment where the evaluator observes your child’s behavior during a series of activities and interactions. The ADOS is designed to engage your child in tasks that assess social interaction, communication, play, and imagination. Depending on your child’s age and language level, the evaluator may adjust the activities to suit their developmental stage.

• MIGDAS (The Modified Interactive-Guided Developmental Assessment System) - The MIGDAS is a qualitative assessment tool used primarily for evaluating children who may be on the autism spectrum. Unlike more structured tests, the MIGDAS focuses on naturalistic, child-led interactions. The assessment is conducted in a relaxed, conversational setting where the evaluator observes the child’s communication, social behaviors, sensory experiences, and emotional responses. Notably, the MIGDAS is especially useful for children who might not respond well to more traditional, structured testing environments. It provides a rich, descriptive profile of the child’s behaviors and can help identify patterns that are characteristic of autism.

• Childhood Autism Rating Scale (CARS) - CARS is another tool that might be used during the evaluation. It’s a rating scale that helps to identify children with autism by assessing behaviors across various domains. The evaluator will rate your child’s behavior in areas like social interactions, emotional responses, body movements, and verbal communication. CARS provides a quantitative measure that can help to determine the severity of symptoms.

• Social Communication Questionnaire (SCQ) - The SCQ is often used as a screening tool before more comprehensive assessments. It’s a parent-report questionnaire that focuses on your child’s communication skills, social interactions, and repetitive behaviors. While it’s not used for diagnosis on its own, the SCQ helps to determine whether further evaluation is needed.

• Vineland Adaptive Behavior Scales (Vineland) - The Vineland assessment evaluates your child’s adaptive behaviors, including daily living skills, socialization, and communication. It helps to understand how your child manages daily activities compared to other children their age. The Vineland is often completed through an interview with the parent or caregiver.

• Developmental, Dimensional, and Diagnostic Interview (3Di) - The 3Di is a comprehensive interview that focuses on your child’s developmental history and current behavior. It covers areas like communication, social interaction, and repetitive behaviors. This interview is often used alongside other assessments to provide a more complete picture of your child’s abilities and challenges.

Questions to Ask

My best piece of advice is to call the assessment center and ask all your questions. You’ll likely feel self conscious, and they may say something like “it will all be fine, don’t worry” (and make you feel like a tightly-wound, anxious parent), or “no one has ever asked me that before!” (and make you feel like a singularly neurotic weirdo), but that’s ok. I have been told all of that and more. But it helps me SO MUCH to ask all my questions, so I know what to expect and so I can begin to ask for accommodations or drop demands.

• What paperwork will I be expected to fill out right then? Could it be done before or after, if I need to co-regulate my child, or if I am too anxious and can’t think straight, or if I need to consult your partner about particular answers?
• Is my child expected to sit and listen during the parent interview portion while I answer questions about their developmental history and challenging behaviors? (Um, yes, this is a terrible idea, but also yes that’s what our assessment for one of my kids was expecting). If the interview must be done at that time, can my child be picked up rather than sit through that part? Can I bring a second adult who can play with my kid while I answer questions? Could it possibly be done virtually, in advance?
• How many different people will be there, and at what points would they come in? Are there any transitions to different rooms? Could it all be done in the same room without transitions, if transitions are difficult for my child?
• What would you do if my kid can’t get out of the car that day? If they start refusing to participate in the middle of the assessment? Could we return to complete it another day, and if so, how would that be handled with insurance and cost? 
•  If my child is struggling to leave the house or needs more time to be able to leave, how should we let you know on the day-of? How late can we be without forfeiting the appointment? Under what circumstances would you consider us a “no show,” and what are the consequences for insurance/waitlist, etc? 
• Are there any points when my child will be expected to separate from me? If separating causes distress, could I come in the room too? If my child shuts down or refuses to interact with the evaluator, could I do the exercises with my child and have them observe? Is this something that you have done before? 
• You can also ask which evaluations they are specifically going to do, by name, and then you can look them up to understand the specific expectations involved. (This is great use for ChatGPT!). 
• Will there be any intelligence or cognitive testing? Will they also be testing for ADHD at the same time, as it is so often co-occuring? The ADOS is always called the “gold standard” but it’s only one way to assess, one way to gather data. There are other newer assessments and assessing styles. Some practices rely heavily on very specific assessments and others use a more loose, holistic approach.

Post-Evaluation: Understanding the Results

Once the evaluation is complete, you’ll receive a detailed report outlining the findings. This report will include observations, test results, and a diagnosis if applicable. The evaluators will explain what these findings mean for your child’s development and provide recommendations for next steps, whether that involves therapy, educational support, or other interventions.

This part of the process can be both relieving and challenging. It’s normal to feel a mix of emotions as you digest the information and consider how best to support your child moving forward. Remember, the evaluation is a tool to better understand your child’s needs and how to meet them, not a judgment or a definitive answer to who your child is. Whether you get the diagnosis you want or not, this is one professional’s opinion, which may or may not be the end of your diagnostic journey. If you don’t get the information you need, you are allowed to keep looking. You may get the insights you need in unexpected corners or in living with and learning from your child.