The Why and How of Diagnosis for Children & Teens

Amanda Bailey

Amanda Bailey

About the Author

Amanda Bailey is an AANE support specialist and a COPAA and Massachusetts PTI-trained educational advocate. She is the neurodivergent parent of two Autistic children.

Neurodivergence is natural and not something to be feared. Wondering if your school-aged child or teen is Autistic can still provoke uncertainty. Caregivers may have spent a long time second-guessing their parenting. Well-meaning relatives or friends often dismiss questions or concerns. A child may have received many other diagnoses before a therapist suggests an autism evaluation. Teens sometimes initiate the process themselves after years of feeling out-of-place among peers.

Getting Curious
While some parents want an answer about whether or not their child or teen is Autistic, others may not be pursuing a specific diagnosis. They may be seeking insight into a child’s or teen’s strengths, why they may be struggling, and what can be done to help. The benefits of an evaluation–regardless of the outcome–include information that can add to your child’s self awareness and self advocacy.  Autistic people in the United States are entitled to protections under disability and civil rights law. A medical autism diagnosis can also provide documentation for insurance coverage, government benefits, and accommodations through schools or institutes of higher learning.

Evaluators
Pediatricians in the U.S. conduct routine autism screenings for babies and toddlers. A full evaluation with assessments has to be completed by a clinician with more specialized training. Several types of providers can evaluate to determine if a child is Autistic, among them developmental pediatricians, psychologists, neurologists, or a team through a hospital’s developmental medicine department. If you have medical insurance, your insurance company may be able to assist with finding an evaluator. You may need a referral from your child’s or teen’s primary care doctor.

Neuropsychologists are another option for an evaluation. Insurance coverage for their services varies. Local autism societies and parent organizations may be able to help you with identifying a potential neuropsychologist. Neuropsychologists conduct intellectual and educational testing in addition to using diagnostic tools. They then develop a complete profile of how the child’s brain is wired for learning, processing, memory, emotion, and behavior. Unlike medical providers, many neuropsychologists will observe a child or teen at school or attend a school team meeting with you. Their educational recommendations often hold more weight as a result.

Families in rural areas sometimes travel for hours to university medical centers or hospitals to obtain an evaluation. Waitlists may range from months to a year or more. You can sometimes expedite this by asking to be placed on an appointment cancellation list. Taking the time to find the clinician who is a good fit for your family, though, may be more important than being seen as soon as possible. Some may be more skilled with assessing girls, for instance.

Waiting Is the Hardest Part
Consider using the weeks or months while the evaluation is pending to compile your child’s developmental history. Depending on their age, recalling when they crawled, pointed, used language, etc., can take some effort! Complete any caregiver checklists. Write out and prioritize your questions. Gather any records from therapy providers or the school to share with the evaluator.

You can also prepare your child for the appointment. This may include communicating with them about what to expect. Hospitals sometimes have pictures or video tours available on their websites. Explaining that the clinician will play games with them to learn how their brain works can be helpful for some children. Teens may need reassurance that you’re getting curious about their brain to figure out their strengths and areas for growth—not seeking to pathologize them.

The Evaluation
Although dependent on the provider, the evaluation will likely consist of completing parent and/or teacher screening or assessment forms, reviewing the child’s developmental history, and clinical interviews. An evaluator should take time to observe your child in the test setting. There are a variety of standardized assessment tools they may use. The process typically takes several hours, sometimes spread over a couple of sessions.

There is usually a separate appointment to review findings and address any questions you have. Parents often share that the days between the completion of testing and learning the results are very hard. You may want to build in time for your family and to take care of yourself during this period. Remember: nothing about your child has changed as a result of this process. Ideally, a thorough report with recommendations for next steps should be issued after the evaluation is concluded.

Medical & Educational Definitions of Autism
Cost and the scarcity of providers are barriers to medical evaluations for many. If your child is experiencing difficulty and a diagnostic assessment isn’t possible, you can always request that the local school district evaluate your child age 3+ for special education eligibility. This process is free and bound to a legal timeline. Note that there is an important distinction between a medical diagnosis of autism (using the current DSM-5-TR) and a finding of eligibility for special education services under autism as defined in the Individuals with Disabilities Education Act (IDEA). A medical diagnosis does not guarantee special education services. A child or teen may meet criteria for a medical diagnosis but still not qualify under the IDEA and vice versa. The educational evaluation findings, however, will still provide insight into your child’s profile.

Some families do both a medical and a special education eligibility evaluation. Know that if you opt to pursue medical and school-based testing, many assessments cannot be repeated within a calendar year or the results may be invalidated. Communication with both teams is key to prevent this. School districts are only required to consider private evaluation reports, not necessarily accept them. Sometimes additional assessments from a speech and language pathologist (SLP) or an occupational therapist (OT) help round out a private medical evaluation.

Potential Downsides
Parents or guardians occasionally ask our staff if there are any drawbacks to evaluation aside from cost. An autism diagnosis can make obtaining life insurance more difficult. Sometimes parents fear a child or teen will use any diagnosis as an excuse. Understanding among caregivers that ability does not always mean a neurodivergent person has the bandwidth or energy to complete a task is important. Other people express worry about stigma or children being labeled. A common expression in family support is that if you don’t provide a label, one will be provided for you … and it will never be a kind one. We want to avoid children taking on negative assumptions about themselves (“lazy,” “weird,” etc.) based on others’ misunderstanding of their neurotype.

If Your Child Is Autistic
The medical model is, regrettably, a deficit model. Clinicians can sometimes imply when discussing autism that if you haven’t done everything yesterday, you have failed your child or teen. This is never the case. We, and our children, learn and grow our whole lives. Your autistic child is the same child you’ve been raising the whole time; you now have more direction. Following #ActuallyAutistic people on social media and seeking out books by autistic authors are great places to start. We can choose to celebrate our children’s strengths as they discover what autism means for them. The process will have given you all critical knowledge to help foster advocacy skills over the long term, in all of you.

Regardless if your child or teen is formally diagnosed, the AANE community is open to you and your family. Whether you want help understanding your neurodivergent or autistic child, assistance with figuring out next steps, or just don’t want to feel alone, our staff are available through free 30-minute information and resource calls, coaching sessions, and support groups.

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