When to consider an autism evaluation

The decision to pursue an autism evaluation for yourself or your child is a big one. It can be costly in terms of time, energy, emotional bandwidth, and money. But many feel it is an important step for better understanding. 

People commonly seek an assessment as an adult, or for their child, when they’re struggling to meet the expectations of their environment. For younger children, this might look like missing milestones, especially with verbal and nonverbal communication. Older children may have difficulty navigating social interactions and friendships. Adults may feel challenged when it comes to understanding complex social rules—like knowing what behavior is expected at work versus when hanging out with friends. And, for children and adults alike, there may be unexplained sensory sensitivities, a strong preference (what sometimes feels like a need) for predictability, and deep dives into interests that others might view as “too much.” 

If you’re noticing differences or challenges and wondering if an autism evaluation is the next step, Avela Health offers online autism screening tools for children, teens, and adults that can help guide you in your decision-making process.

Another reason people seek a diagnosis is to understand themselves or their child better. Some have always felt different but never understood why, and are now ready to get support in understanding how they process the world. In other cases, a family member may have recently been diagnosed, and the person starts to recognize similarities in themselves. Understanding how you or your child processes the world can provide valuable insight, reduce feelings of isolation, and help build self-acceptance and confidence. It’s empowering to know your unique strengths and challenges through a neuroaffirming lens that respects neurodiversity as part of the natural variation of humanity.

Finally, seeking a diagnosis can be essential for accessing care and services. In many cases, having a formal diagnosis is necessary to access important support programs, which can improve quality of life for individuals and families.

Medical autism diagnosis versus school eligibility: what is the difference and does it matter?

In the United States, there are two main systems for autism support: the medical system and the school system. Unfortunately, these systems aren’t always aligned, which means that if your child is school-age, you may need to pursue evaluations through both systems separately (in some cases, a school will accept a medical diagnosis of autism).

Under a federal law called IDEA (the Individuals with Disabilities Education Act), schools provide special education services for eligible children ages 3-21. To qualify, the child must:

1.  Meet specific criteria for one of the 14 disability categories listed in the law (like autism)
2. Require specialized services to access education. 

If a child qualifies, they get an IEP (Individualized Education Program) that outlines educational goals, specialized instruction, accommodations, and related services. However, if the school determines that  an autistic child doesn’t need specialized services to learn, they may not qualify for an IEP, even if they have a medical diagnosis of autism.

Even if your child does not qualify for an IEP, they may still be eligible for accommodations and support to help them access the general education environment during elementary and secondary school using what is called a 504 Plan. A 504 plan uses a broader definition of a disability than IDEA which is why some people who do not qualify for an IEP will qualify for an 504 plan.   

The good news is that once your child qualifies for an IEP or a 504 plan all of the services and supports outlined in the plan are provided free of charge to your child, as part of their education.  

A medical evaluation is a separate process, typically performed by a psychologist, psychiatrist, developmental pediatrician, or neurologist. This evaluation is based on criteria developed by the American Psychiatric Association and described in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). A medical evaluation looks at whether an individual meets the DSM-5 criteria for autism or any other diagnosis.

The benefit of a medical diagnosis is that it can provide access to insurance coverage for specialized services, like ABA therapy, speech therapy, and occupational therapy. However, medical evaluations can be costly, with long waitlists and limited insurance coverage depending on your plan. Because we understand that long waits can be stressful and delay access to care, at Avela Health we provide access to an expert-led evaluation in days, not months. See if your family is eligible.

What should I look for when searching for someone to complete a diagnostic evaluation?

When you decide to pursue a diagnostic evaluation, it’s easy to feel anxious; it may feel tempting to go with the first provider you find. However, we encourage you to take the time to  identify a clinician or practice who offers a “best-practice” assessment. It’s worth doing your research before moving forward.

Does the clinician have a neurodiversity-affirming approach?

Neurodiversity is the idea that neurological differences—like autism—are part of natural brain variation. Neurodiversity-affirming clinicians accept and embrace these differences, viewing them as just that, differences and not deficits. Rather than focusing on deficits, these clinicians emphasize strengths and how a person can navigate the world with the unique strengths and abilities they have. This is not to say that symptoms of autism do not create significant challenges for some people but rather that orienting towards differences rather than deficits is a way to provide a better picture of the whole person. A neurodiversity-affirming evaluation is  strength-based, meaning the clinician will highlight both where a person excels and where they might benefit from extra support or accommodations.

Who is qualified to do the assessment?

Many licensed providers have the license or credential to conduct a diagnostic evaluation. These include psychologists, psychiatrists, developmental pediatricians, neurologists, and in some states, speech and language pathologists. Beyond the credential allowing a person to make a diagnosis, it’s essential to choose someone with experience working with autistic individuals from a neurodiversity-affirming perspective and expertise and experience in the autism diagnostic process. More specifically, look for someone who has experience and expertise working with individuals similar to the person who is considering the diagnosis. 

For example, conducting an evaluation with a child under age 3 is very different from working with older children. Similarly, as children reach adolescence (and sometimes younger), masking (behaving in ways that feel unnatural to a person in an attempt to ‘fit in’) becomes more common. Masking is also very common for many adults and therefore it is critical that a diagnostician be familiar with masking and able to navigate the diagnostic process when masking may be occurring. Also, because autism may present differently in girls and those assigned female at birth, clinicians should have a deep understanding of how autism may manifest in these populations.

The diagnostic process also can be complex because of the various ways that symptoms can present across individuals and because  symptoms can overlap with other diagnoses like ADHD or anxiety. Therefore, it’s important that the clinician not only specializes in autism but is also knowledgeable about other behavioral health conditions and is able to do a rigorous differential diagnosis process. 

Is a virtual autism assessment okay?

With the rise of virtual autism assessments, people have more options than ever to access diagnosis. Virtual evaluations can be just as valid as an in-person one, but it’s important to ensure the evaluation is comprehensive. Whether in-person or online, make sure the evaluation includes the necessary components (such as a detailed history and behavioral observations) and that the provider has expertise in autism diagnostic evaluations in person and via a virtual platform.

What makes a thorough autism assessment?

It’s important to differentiate between screenings and diagnostic tools. Screenings are useful as a first step to determine if a more comprehensive evaluation is needed. However, they can be too broad and may result in a false positive or false negative. The only way to get a clear answer is through a thorough diagnostic assessment.

A comprehensive evaluation includes:

  • Reviewing Records: Your clinician should review any prior assessments to avoid duplication and gather a complete picture of the individual’s history.
  • Developmental and Psychosocial History: The clinician will gather information about the person’s development through interviews with the individual, their caregivers, and teachers.
  • Developmental Assessment: The clinician will conduct one or more assessments to understand the individual’s skills relative to their age and developmental stage.
  • Semi-structured and Unstructured Observation: This step involves observing the individual’s behavior during both structured and unstructured activities. The clinician will focus on key areas such as social interactions,  play (for children), and communication uses . For online assessments, especially with individuals who may not yet be verbal or able to engage in conversation, the clinician will typically observe the individual’s interactions with a caregiver who is present in the room. This helps the clinician understand how the individual communicates and connects with others, even without words.

Getting an autism assessment can be an important step in better understanding your or your child’s strengths and challenges. By knowing what to look for in a clinician and understanding the process, you can make an informed decision that best supports you and your family.