You suspect your child is autistic. They are developing differently from their peers, particularly in the socialization and communication departments. They might be very picky with food, show a delay in speech, or even hurt themselves. You might have taken a free autism test (or two) online and the results show that you should speak to your doctor or a specialist. Is it worth it to get an official diagnosis?

Getting diagnosed with autism isn't as taboo as it used to be. Awareness and acceptance of autism have increased in recent years, thanks in part to recent research by the CDC, trending TikTok videos, and celebrity influencers like Amy Schumer, Elon Musk, and Tom Stoltman (the world’s strongest man). And more importantly, autistic people find a diagnosis empowering, especially if they received more support at a younger age.

What are the benefits of an early autism diagnosis?

An early diagnosis can help you and your child’s doctors better understand your child and identify their specific support needs. While it may sound expensive, a formal medical diagnosis for autism spectrum disorder (ASD) can also help your family access different therapies and services more affordably. You may be able to access disability benefits and more insurance coverage for different therapies like ABA, speech, or occupational therapy.

Research shows that early intervention (services and supports for kids with developmental delays or disabilities) leads to less negative emotions and behaviors in later years. A 2022 study of autistic college students found that those who were diagnosed as children felt happier about their lives than those who were diagnosed when they were older.¹

Who can diagnose autism?

Your pediatrician might be able to administer screenings, but most general doctors are not trained to formally diagnose autism. They might refer you to a qualified diagnostic clinician which include:

Developmental Pediatricians
Child Psychologists
Child Psychiatrists
Pediatric Neurologists
Pediatric Neuropsychologists

Your experience might look different depending on the type of clinician you choose. Many families prefer working with developmental pediatricians. Others might work with a psychiatrist or another specialist to get a different perspective. Most ASD assessments involve only one specialist unless there is a significant concern about a differential diagnosis (e.g., apraxia). There isn’t one standard way to diagnose autism. The diagnostic process is complex as we learn more from research and as new assessment tools are developed.

Are autism assessment tools accurate?

Yes, but there is room for improvement. We don’t have a single, perfect diagnostic tool for autism and there are a lot of factors that contribute to an accurate diagnosis. There are a few “gold standards” that are used for diagnosis (see our list below!). Ideally, an autism diagnosis involves a team of highly trained, experienced specialists who use a range of assessments. There are a lot of nuances in autistic behaviors so it’s important whoever you are working with understands these differences. A true autism expert will be able to distinguish a child who doesn’t speak because they are shy, versus a child who doesn’t speak because of language delays, versus a child who may be autistic.

While our diagnostic tools are strong, they need to be better. One of the barriers to diagnoses is that the criteria for ASD is based upon research conducted primarily on boys. This has led to significant disparities in evaluation and support for other populations. Autistic girls (or people assigned female at birth) can go underdiagnosed or get misdiagnosed. Girls tend to have a quieter presentation, engage in less repetitive patterns of behavior, and more easily “mask” their autism to appear more neurotypical.² Recent research have highlighted racial inequities in the diagnosis and treatment of non-White children and children from low-income families. For example, the average age of diagnosis for black children was older than 5 years old, and over 3 years after the parents first identified developmental concerns.³

What can I expect from a diagnostic evaluation? What are the best autism assessment tools I should look out for?

There are a few different types of assessment tools you should know about. It usually starts with an autism screener. The actual ASD assessment will include a developmental or intelligence measure, an adaptive measure, ASD-specific questionnaires, the developmental interview, and the ASD-specific assessment. The really great providers also include speech and language testing, but that is pretty rare. They might refer you to another specialist for different assessment needs. Let’s dive deeper into the 6-part process:

1. The autism screener

You will most likely start the autism diagnostic evaluation by taking a screener. You might also share a completed screener that you took online or with another doctor. A screener helps parents and professionals decide if they should do a more comprehensive evaluation. One popular option you might use:

The most well-studied autism screener for young children. Modified Checklist for Autism in Toddlers, Revised (M-CHAT)

Best for ages 16-30 months | 20 yes or no questions | 10 minutes

The M-CHAT is one of the most researched and accessible autism screeners you can use. It’s free to take online. Many pediatricians use the M-CHAT to screen toddlers for autism. Questions are based on common autistic traits and behaviors, focusing on your child’s language abilities, movement, emotions, and thinking skills.

For more details on screeners recommended by our community, check out our list of the best autism screeners. You can work with your provider to decide which is best for your family or find a specialist who matches your needs.

2. The developmental/intelligence measure

The autism diagnostic evaluation will include a developmental or intelligence measure. A developmental measure is commonly used for young kids. It directly measures the child's development abilities (i.e., gross/fine motor, receptive/expressive language, and visual perception abilities). For older children (i.e., older than about 5), an IQ (intelligence quotient) test is commonly given.

These tests look at the child's ability to perform a task in that setting and can be influenced by environmental factors or if the child is able to follow the demands of the situation. It can help predict what a child is capable of in school or in therapy. There are a handful of different developmental and intelligence measures your provider might use. Here are some popular examples:

The developmental test loved by doctors with a research background. Mullen Scales of Early Learning (Mullen)

For ages 0-68 months | ~25-35 minutes | Not autism specific

The Mullen is loved by ASD clinicians with a research background. It is also known to be an affordable tool compared to other developmental tests!

The most commonly used IQ measure. Wechsler Intelligence Scale for Children (WISC-V)

For ages 6-17 years | ~90 minutes | Not autism specific

The most commonly used IQ measure is the Wechsler series, which has many options depending on the age of the individual. These measures look at intelligence comprehensively, including verbal (using words), fluid (nonverbal logic), and visual-spatial (puzzles and manipulating objects in space) reasoning, as well as processing speed (how quickly and efficiently information is processed) and working memory (holding and using information in short-term memory).

3. The adaptive measure

The autism diagnostic evaluation will also include an adaptive measure. This tool looks at developmental areas based on an interview with the parent. They are more based on parent/caregiver/teacher observations. Because this relies on observation, this can be biased or may not be a true measure of what a child is capable of in standardized settings. Providers will most likely combine observations from the developmental and adaptive measures to try to get a better idea of what a child is capable of holistically. One popular option:

The school-approved adaptive measure. Vineland Adaptive Behavior Scales (Vineland-3)

For all ages | 20-90 minutes | Can be done virtually | Available in Spanish

The Vineland is commonly used in schools and in a lot of clinics because the measure matches the eligibility requirements for support from regional centers in California (also known as autism centers in other states). Our expert reviewer Melanie is a huge fan of the Vineland test!

4. Autism-specific questionnaires

You might answer more autism-specific questions. One popular option you might encounter:

The autism specialist’s test. Social Communication Questionnaire (SCQ)

Best for ages 4 and older | 40 yes or no questions | 15 minutes

The autism-focused SCQ examines a broad range of communication and social skills and is based on the ADI-R (please see below!).

5. The developmental interview

And then there’s a developmental interview.

The parent interview. Autism Diagnostic Interview-Revised (ADI-R)

For ages 18 months+ | 90-150 minutes which includes scoring

ADI-R is a gold-standard developmental assessment that is often modified when used in clinical settings. The full version of the ADI-R is commonly used in research settings to help differentiate between difficult diagnoses. During an ADI-R assessment, a trained clinician will conduct an interview with the child’s caregivers. The ADI-R focuses on the developmental history of the child and does not directly involve the child. The ADI-R is administered with the autism-specific assessment ADOS (see the final step)!

6. The autism-specific assessment

And lastly, there’s a comprehensive autism-specific assessment. There are many options on the market. Here are 3 you should know about:

The gold standard autism assessment tool for kids and adults. Autism Diagnostic Observation Schedule (ADOS-2)

For ages 1+ (can walk on their own) | 30-60 minutes and follow up meetings

A highly trained clinician will engage and play with your child. The ADOS is a natural and activity-based assessment that evaluates your child’s communication skills, social interactions, and behaviors. The assessment includes detailed questions for families and effective pretend play components that make the process more fun for kids. The ADOS is also very effective at screening children and adults who have limited or no verbal communication skills. It is not as effective for individuals with significant sensory or motor impairments (e.g., blindness, deafness, confined to wheelchair). For younger children, parents remain in the room and are a part of the evaluation. For adolescents and adults, parents are not needed for the assessment.

The virtual-friendly assessment for toddlers. Vanderbilt’s TELE-ASD-PEDS (Telemedicine-Based Autism Spectrum Disorder Assessment in Toddlers)

For ages 0-3 years old | 20 minutes

TELE-ASD-PEDS is a research-based telehealth autism assessment. Though the other assessments on our list can also be done online with the right clinician, this one is known to be one of the best thanks to recent research.³ A trained provider will walk parents through several basic tasks with their child, such as guided play, communication opportunities (e.g., having a child request a snack, and social communication (e.g., response to name, following a person’s eye gaze or point). The provider observes the interactions and watches for signs of autism.

The effective assessment for females and those who mask their autistic traits. Monteiro Interview Guidelines for Diagnosing the Autism Spectrum (MIGDAS-2)

For ages 3+ | 30-90 min depending on the format

A MIGDAS provider will interview the parents, teachers, and child/individual. The MIGDAS assessment looks at the way an individual views the world and can be very effective for females and individuals who mask their autistic traits. Most ASD clinicians use the MIGDAS more for older adolescents or adults, as well as for girls and those assigned female at birth. However, it might be harder to access the MIGDAS. For example, it is not an accepted measure to use for ASD diagnostic verification for the regional centers in California nor most of the insurance companies. They usually require the ADOS-2 or the TELE-ASD-PEDS (depending on age). Check with your provider to review your options.

What do I need to do to start the diagnostic process?

Take a deep breath and sign up for a waitlist (or two). Waitlists for medical evaluations are also known to be long. You might wait a few weeks or even a year before your first appointment. It’s always a good idea to add your child to multiple clinic waitlists to increase the chances of getting an evaluation spot faster. Find high quality diagnostic providers with waiting list times and insurance information here.

Talk to your child’s school if you haven’t already. Many public schools offer free support for special needs children and will do their own evaluation. This is known as an evaluation for an educational diagnosis. This helps them determine if your child qualifies for an Individualized Education Program (IEP) and their special needs services. Many autistic children have both a medical and educational diagnosis.

Start services or therapy if you haven’t already. You don’t need an official diagnosis to start services. Some don’t require an official diagnosis. For example, your insurance might cover some speech and occupational therapy sessions (and increase coverage once there is an official medical diagnosis). You can start looking for services that will help with your child’s growth and development now.

Learn more about what you can expect from a comprehensive autism diagnosis evaluation here.

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