How To: Preparing for Evaluation and Diagnosis

Step 1: Prepare Documentation

Most providers require some kind of paperwork before seeing your child. This paperwork ranges from insurance information and family history to screening tools and questionnaires. Often, the provider (or someone on their staff) will explain what each form is for and answer your questions about them. It’s a good idea to complete this paperwork and return it as soon as you can because your provider will use it as part of the evaluation.

Preparing documentation also means putting your own paperwork together. Some types of data families take to evaluations include:

• Information about pregnancy and delivery
• List of key milestones and dates
• List of specialists who have worked with your child
• List of medications your child uses (or has used in the past)
• Dates and types of surgeries or inpatient hospital stays
• Photos and videos that show concerns you have
• Notes from teachers or daycare workers that share your concerns
• Important school documents, including Evaluation Team Reports (ETRs), Individualized Education Programs (IEPs), behavior analysis plans or 504 plans.

Step 2: Prepare Yourself

The provider you choose should tell you how an evaluation works. Each specialty and office does things a little bit differently, but most tend to follow this process:

• Parent Interview: The provider learns about your concerns and experiences with your child. You may be asked to answer questions or complete rating scales before meeting.
• Child Observation: Providers use specialized tools (for example, an IQ test) to understand your child’s strengths and challenges. Depending on the type of evaluation, your child may meet with more than one person (for example, a psychologist and a speech therapist).
• Report Writing: After collecting information about your child, the provider may write a report. The report summarizes what they learned and shares why your child did or did not meet diagnostic criteria. Most reports also include recommendations for treatment.
• Diagnosis Meeting: The provider will meet with you (and sometimes your child) to explain what they found.

The evaluation and diagnosis process is stressful for most families. While some diagnoses are completed quickly, others can take a full day or cover multiple appointments. As you prepare for your child’s evaluation, these tips can help you to stay focused:

• Eat well and get plenty of sleep
• Keep a notebook with a list of questions you want to ask
• Get support from trusted friends/family or a counselor

What are "Diagnostic Criteria?"

Diagnostic criteria are lists of symptoms that are used to identify a diagnosis. For example, if you have a runny nose, feel achy and have a sore throat – but do not have a fever – you’d probably think you have a cold.

Mental health and medical professionals use the same type of process to diagnose concerns about a child. The symptoms used to make a diagnosis are standardized in reference books, like the Diagnostic and Statistical Manual of Mental Disorders (DSM).

Step 3: Prepare Your Child

Children do better when they know what to expect. To prepare your child for an evaluation appointment:

• Explain What Will Happen: Use language that your child understands – like, “we are going to meet Dr. Smith. Dr. Smith will do some puzzles with you to learn what you’re good at. We’ll also learn what is hard for you, so we can help you grow.”
• Set Expectations: Let your child know where you are going and how long the appointment will take.
• Address Fears/Worries: Some children may be worried about meeting a new doctor. Make sure to listen to and respond to their concerns. For example, “I see why you are worried, but Dr. Smith is a talking doctor – that means we’ll just talk. There won’t be any shots today.”
• Plan to Celebrate: Many children do better when they know they are working for a reward. If this motivates your child, you can plan to celebrate after their appointment with a special treat.

Social Stories

Social stories are tools you can use to help prepare your child for a new experience (see examples here and here). These short stories use pictures and/or simple sentences to tell children what will happen and how they should act. The provider doing your child’s evaluation may have a social story you can use or you can make one yourself.

Even when families can guess what the diagnosis will be, it can be hard to hear how your child is struggling. It can help to look at what a diagnosis does and doesn’t do:

• A diagnosis doesn’t change the child you know and love. Your child is still the same person they were before the evaluation.
• A new diagnosis does take adjustment. It’s natural to have feelings about your child’s diagnosis – and it can be helpful to discuss them with a trusted person or use a counselor to get support.
• A diagnosis does give you and your child knowledge to help tackle challenges. When you understand your child’s strengths and weaknesses, you can help them where they need it.
• In some cases, a diagnosis does help children to access services and support. It’s a good idea to discuss this with the provider who evaluated your child – or schedule an Ask Us! with our Family Resource Specialists (FRS) to learn more.

In many cases, a new diagnosis comes with a list of follow-up tasks. It’s easy to get burned out by trying to do everything at once – especially when you’re trying to learn about the diagnosis at the same time. The provider who evaluated your child or your child’s primary care provider can help you to prioritize and choose what’s right for your child.

Educational Designation

When you work with a diagnosing professional, your child may receive a “medical diagnosis.” A medical diagnosis is sometimes used to help with the school evaluation process, but it is not the same as an educational designation (sometimes called an “educational” or “academic diagnosis”). For more information on the differences between medical and academic diagnoses, see the frequently asked questions section in the School Resource Guide.

Telling Your Child

Telling your child about a diagnosis is a decision that each family has to make for itself. Some children are not ready to learn about diagnosis specifics, while others can benefit from knowing the reason that some things are hard.

We recommend finding and listening to adults with the same diagnosis. Many of these adults have written about what they would have liked to know – or what the information means to them. You can also look for organizations who serve people with the same diagnosis or ask your local children’s librarian to help you find books with characters who have the same diagnosis as your child.

Learning More

After a new diagnosis, many families spend time researching and reading more about it. Sifting through information and finding reliable resources can be challenging, but you don’t have to do it alone! Connecting for Kids Family Resource Specialists (FRS) can help you get started with a free Ask Us! call. Learn more about Ask Us! or reserve a time.