Autism Diagnosis: A complete guide for parents who think their child might be autistic

Autism Diagnosis: The Complete Guide for Parents

Updated: August 19, 2022 · 8 Minute Read

Vivien Keil, Ph.D.

Reviewed by:

Vivien Keil, Ph.D.

Highlights

  • Many autistic people who were diagnosed as children felt happier than those who were diagnosed when they were older.
  • Some therapies and services require an official autism diagnosis in order to be covered by insurance.
  • If you think your child might be autistic, take an online screener and share any observations, questions, or concerns with your pediatrician as soon as they appear. Results of a screening can help you identify if your child needs a formal diagnostic evaluation.
  • Your state’s early intervention program might provide developmental evaluations for free if your child is under 3 years old. If your child is over 3 years of age, developmental pediatricians, psychologists, or neuropsychologists are the preferred specialists who can provide more comprehensive autism evaluations.
  • The cost of a full autism evaluation ranges from $2,000 - $5,000 without insurance or government benefits.
  • Some pediatricians are not familiar with the latest autism research, so please continue to advocate for your child if you have concerns. And even though diagnostic tools are fairly accurate, they can be improved to better identify autism in females and people of color —you know your child better than anyone and are the best advocate for them!

In the world of autism, there is so much to know. It can feel incredibly overwhelming as a parent trying to make sense of it on your own. How important is it really to get a formal diagnosis? Is it worth it? If you suspect your child is autistic, getting them diagnosed will be an important step for their growth and development. Many parents of autistic children find this time period stressful, but ultimately, one of the best paths forward to a better, healthier life for their children.  

 

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 An early diagnosis empowers your child by providing access to critical support and will help your family better understand how your loved one interacts with the world.  

 

Let’s start with the basics. What is autism?

Autism, also known as autism spectrum disorder (ASD), is a complex neurodevelopmental condition. It’s referred to as a spectrum condition because it is different for every person.2 The road to a diagnosis might begin with you noticing behaviors in your child that seem unusual, like your baby not making eye contact, not responding to their name, or not developing language skills. Autistic children typically have sensory sensitivities and challenges with social cues. These signs usually appear in early childhood within the first two years, but for some children may not present until they begin preschool.3

 

What are the benefits to getting an official autism diagnosis?

A formal ASD diagnosis, or a medical diagnosis, helps you get the support your family needs, especially within the context of accessing medically necessary therapies and services.4

 

Insurance Coverage for Therapies: Medically necessary therapies for ASD are often covered by insurance including, but not limited to, speech therapy, ABA therapy, and occupational therapy. For example, insurance coverage of ABA therapy requires an ASD diagnosis.

 

Financial Support: A diagnosis is required when applying for social security or disability benefits. 

 

Plan for Care: A diagnosis helps identify your child’s support needs. For example, your child might need to develop social communication and self-regulation skills.

 

Future Research: The more data we gather through evaluations, the more we can improve services for autistic children and adults.

 

A medical diagnosis is not required for early intervention (EI) or special education programs. If your child is under the age of 3 years old, you can call your state’s free early intervention program to see if you qualify for their services. Many public schools offer free support for special needs children and will do their own assessment, which some people call an educational diagnosis, to see if your child qualifies for an Individualized Education Program (IEP) and their services. Many children with autism have both a medical diagnosis and educational classification.

 

Ok, so how do I test my child for autism?

There is no single “test” for autism. A formal diagnosis requires interviews with you (the parent or caregiver), observations of your child, and then an evaluation with a specialist. Sounds like a lot, but we’ll lead you to the light:  

 

Take a free screener online. The Modified Checklist for Autism in Toddlers (M-CHAT) and Childhood Autism Spectrum Test (CAST) are popular interview tools doctors use to screen for autism. Questions are based on common autistic traits and behaviors, focusing on your child’s language abilities, movement, emotions, and thinking skills. If you score at a medium or high risk, bring your completed screener and results to your pediatrician. If it’s a low risk, keep tracking your child’s development closely —if anything changes or concerns linger, get a consultation with a developmental specialist. If you’d like to explore more options, here is a list of autism screeners that might require a fee. 

 

Set up a developmental screening with your child’s doctor. Your pediatrician will begin to screen your child for developmental delays at your first well child visit. The American Academy of Pediatrics recommends screening specifically for autism during the 18 and 24-month well child check-ups. Your doctor will watch how your child responds to you and to them. 

 

If further evaluation is needed, your doctor might refer you to your state’s free early intervention program if your child is under the age of 3. If your child is older than 3 years old or if they would benefit from a more comprehensive evaluation, your doctor might recommend a developmental pediatrician, psychologist, or neuropsychologist who are the preferred specialists trained to identify and diagnose autism. Some pediatricians are not up-to-date with the latest autism research, so if this is your situation, you can also search for a high quality developmental pediatrician or autism specialist near you.

 


 

How are diagnostic tests different from screenings?

It’s simple: a diagnostic test can result in a formal diagnosis. It’s also more accurate and requires more details than a screening. Results of a screening can help you identify if your child needs a formal diagnostic evaluation. The formal diagnosis is often needed to access services paid for by your insurance company.

 

The diagnostic process often includes the use of standardized tools to test for autism specifically. Two of the most useful tools are the ADOS-2 and ADI-R. 

 

ADOS-2: The Autism Diagnostic Observation Schedule (ADOS-2) is one of the most common assessment tools used for diagnosing autism in children. It’s an activity-based assessment that evaluates your child’s communication skills, social interactions, and play skills. Since identifying autism is not a perfect science, the ADOS-2 still requires clinical judgment from a clinician highly trained in making ASD diagnoses.5  

 

ADI-R: The Autism Diagnostic Interview is another one of the most commonly used tools. It is a 90 min standardized interview conducted by a trained researcher or psychologist with the child’s caregivers. The ADI-R focuses on the developmental history of the child, and does not directly involve the child.6 

 

Is getting an autism diagnosis expensive? How do I afford this?

Receiving a formal diagnosis can be very expensive. The average cost of a full autism evaluation ranges from $2,000 - $5,000. Your insurance may cover some, or all, of the costs of testing but you should speak with your specific insurance carrier to learn about your coverage for ASD evaluations. Diagnosis and assessments at your local autism center might be available for free for children under 3 years old. Some early intervention programs can process an autism evaluation request quickly and efficiently. Others are known for long wait times and they might refer you to another autism specialist for a diagnosis. For those under 21 years old, Medicaid may also cover the costs of testing.

 

How long does this all take?

The exact time depends —it could take a few weeks or a few months. Waitlists for diagnostic clinics play a big factor in this. You might have to wait a month to get an evaluation at some clinics and over a year for others. It’s always a good idea to add your child to multiple clinic waitlists to help expedite getting an evaluation spot.   

 

A comprehensive evaluation generally takes up to six hours for children under 5 years, and up to ten hours for older children. After the evaluation (usually a few weeks), you will have the chance to meet with the diagnosing clinician or team to go over their findings and explain any diagnoses, review clinical recommendations, and ask any questions. In some cases, if it’s not clearly autism, specialists might work with the family for a longer period of time before making a diagnosis.  

 

If you suspect your child may be autistic, don’t wait! Share any observations, questions, or concerns with your pediatrician as soon as they appear. An early diagnosis can greatly improve your child’s life and your family's life. The sooner you are able to get a diagnosis, the quicker you'll be able to get the support your child needs to learn important skills so they can reach their full potential.

Dive Deeper

Article References

  1. Oredipe T, Kofner B, Riccio A, et al. Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students. Autism. April 2022. doi:10.1177/13623613221086700
  2. Autism Spectrum Disorder Fact Sheet | National Institute of Neurological Disorders and Stroke.” Nih.gov, 2013, www.ninds.nih.gov/health-information/patient-caregiver-education/fact-sheets/autism-spectrum-disorder-fact-sheet.
  3. Maenner MJ, Shaw KA, Bakian AV, et al. (2021). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network. doi: http://dx.doi.org/10.15585/mmwr.ss7011a1
  4. The National Early Childhood Technical Assistance Center. The Importance of Early Intervention for Infants and Toddlers with Disabilities and Their Families. https://ectacenter.org/. Published July 2011. https://ectacenter.org/~pdfs/pubs/importanceofearlyintervention.pdf 
  5. Lord, C., et al. “The Autism Diagnostic Observation Schedule-Generic: A Standard Measure of Social and Communication Deficits Associated with the Spectrum of Autism.” Journal of Autism and Developmental Disorders, vol. 30, no. 3, June 2000, pp. 205–23, pubmed.ncbi.nlm.nih.gov/11055457/.
  6. Hyman, Susan L., et al. “Identification, Evaluation, and Management of Children with Autism Spectrum Disorder.” Pediatrics, vol. 145, no. 1, Dec. 2019, p. e20193447, https://doi.org/10.1542/peds.2019-3447.
  7. Kamp-Becker, I., Albertowski, K., Becker, J. et al. Diagnostic accuracy of the ADOS and ADOS-2 in clinical practice. Eur Child Adolesc Psychiatry 27, 1193–1207 (2018). https://doi.org/10.1007/s00787-018-1143-y
  8. Lockwood Estrin, G., Milner, V., Spain, D., Happé, F., & Colvert, E. (2020). Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-020-00225-8
  9. Aylward, B. S., Gal-Szabo, D. E., & Taraman, S. (2021). Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder. Journal of Developmental & Behavioral Pediatrics, Publish Ahead of Print. https://doi.org/10.1097/dbp.0000000000000996
  10. Corona, L., Hine, J., Nicholson, A., Stone, C., Swanson, A., Wade, J., Wagner, L., Weitlauf, A., & Warren, Z. (2020). TELE-ASD-PEDS: A Telemedicine-based ASD Evaluation Tool for Toddlers and Young Children. Vanderbilt University Medical Center. https://vkc.vumc.org/vkc/triad/tele-asd-peds 
  11. Monteiro SA, Spinks-Franklin A, Treadwell-Deering D, et al. Prevalence of Autism Spectrum Disorder in Children Referred for Diagnostic Autism Evaluation. Clinical Pediatrics. 2015;54(14):1322-1327. doi:10.1177/0009922815592607