Autism Diagnosis in Primary Care

Key Factors to Consider

Learn About ASD
• Understand the ASD diagnostic criteria. This includes understanding core characteristics as outlined in the Diagnostic and Statistical Manual – 5th Edition, Text Revision (DSM-5 -TR) for ASD.
• Understand the differential diagnosis for ASD.  Some children you might assess for ASD will have other conditions (e.g., anxiety, language delays, global developmental delay, attention deficit hyperactivity disorder, vision impairment, deaf/hard of hearing) in addition or instead of ASD.  It is important to be able to diagnose and treat these conditions, as well as rule them out during the diagnosis process.
• Understand ASD supports and services. Giving families an ASD diagnosis will be most helpful if you can also recommend evidence-informed ASD supports and services.
• Understand common co-occurring medical conditions.  Children on the autism spectrum are at higher risk of many medical conditions including obesity, constipation, sleep disorders, and epilepsy. The treatment of these conditions may vary from the treatment in children with typical development.  Knowing how to screen for and manage these contributing conditions will help you serve the child on the autism spectrum more completely.
• There are many resources for learning about ASD.  The AAP Autism Pedialink CME/MOC course is a great place to start. Other online resources include:  
  • The AAP clinical report, “Identification, Evaluation, and Management of Children With Autism Spectrum Disorder”
  • AAP ASD Patient Care Page
  • Autism Intervention Research Network on Physical Health
  • Autism Care Network
  • Attend a conference or take a formal program to increase your knowledge about ASD.
• The ASD field is always changing.  The AAP Council on Children with Disabilities has periodic information/education sessions regarding new developments in autism.  ECHO Autism is another program that can offer training and education to pediatricians looking to learn more. 
Consider your State and Local Environment
• Familiarize yourself with local supports and services. This includes some of the following:
  • State Early Intervention and Early Childhood Special Education Program
  • Local therapy agencies, including speech therapy, occupational therapy, applied behavior analysis (ABA), physical therapy
  • State developmental disabilities services and/or Medicaid waiver programs
  • Local family/caregiver support agencies, such as your state/territory Family Voices affiliate organization or Family-to-Family Health Information Center, Parent to Parent USA, Autism Society chapter or your local Autism Speaks program
  • Mental/behavioral health and parenting resources
• Develop a relationship with a local developmental behavioral pediatrician or other autism specialist with whom you can ask clinical questions.  Your state child psychiatric access program/pediatric mental health care access program (if you have one) might also be helpful for behavior and medication management.
• Understand the insurance/payor landscape in your area. Some insurance companies and agencies will  cover some supports and services only after specific testing has been completed. Check with your local insurers/and state developmental disabilities agency for their requirements. You will need to know:
  • Do insurers and state agencies require a specific type of clinician make an ASD diagnosis before approving access to specific types of therapy?
    • These insurance and agency-based restrictions typically apply to insurance approval for ABA. In some states, this may also apply to services received through state Developmental Disabilities Programs. Note that pediatricians can make the ASD diagnosis and the child can receive other supports/services such as speech, physical and occupational therapy, even if the child is not approved for ABA.  
  • What diagnostic documentation do insurers and state agencies require to provide services? Inquire about documentation needed by insurers for more expensive but common services, including ABA therapy, genetic testing, and developmental disabilities services.  
    • Some insurers may require a specific observational measure (e.g., the Autism Diagnostic Observational Schedule [ADOS]), or a specific adaptive measure (e.g., the Vineland Adaptive Behavior Scales).  
  • Which therapy providers take your patients’ insurance? This is particularly important for Medicaid-insured patients. You can find this information through some of the following methods (this list is not exhaustive):
    • asking autism specialists in your area
    • asking payors directly
    • inquiring with your local AAP chapter
    • inquiring with your local Family Voices affiliate or Family-to-Family Health Information Center
    • inquiring with your local Autism Society state affiliate or Arc Chapter
Learn the Elements of an ASD Diagnostic Evaluation
• According to the AAP clinical report on ASD, an ASD diagnostic evaluation should minimally include:
  • A DSM-5-TR focused interview with attention to each of the core DSM domains of social communication and repetitive/restricted behaviors.
  • A comprehensive past medical, developmental, social and family history, focusing on factors that contribute to differences in child development (e.g., prematurity, trauma history, family history of developmental conditions).
  • A physical examination, including detailed neurological exam, as well as attention to growth parameters and any evidence of dysmorphology or other developmental syndromes.
  • A structured behavioral observation.  There are many choices for this, most require specific training.
  • Hearing and vision testing, if these have not already been performed.
  • A table below provides information about diagnostic tools that can help with the diagnostic evaluation. The AAP does not endorse or support use of any one tool over another.

View Full Table
Reproduced with permission from John Wiley and Sons. Wieckowski AT, Zuckerman KE, Broder-Fingert S, Robins DL. Addressing current barriers to autism diagnoses through a tiered diagnostic approach involving pediatric primary care providers. Autism Res. 2022;15(12):2216-2222. doi:10.1002/aur.2832. 
• You might also want or need to include:
  • Collateral information from outside entities, such as early intervention reports, school evaluations, daycare/school observations.
  • Standardized adaptive testing.
  • A standardized measure of general child development.
Consider Your Physical Space and Time Constraints
• An autism evaluation will take between 1 and 3 hours of your time if you do it yourself.  
• You will need a room with a small table or a floor where you can play with the child and observe the child’s behavior.
• Some pediatricians and other primary care physicians prefer to break up the evaluation into several shorter visits.  Some portions could also be administered via telehealth.
Patient Selection
• You will need to develop a process for selecting and scheduling patients who are appropriate for medical home ASD evaluation.  
  • For instance, you may want to consider having a way to track patients determined to be at risk for ASD during developmental screening/surveillance to help in scheduling them for an evaluation.
  • You may also need a triage process to serve the children most appropriate for your assessment, if there are more interested families than you can accommodate.
  • When developing a process for triaging, you may want to consider that the diagnosis can be more straightforward in younger children (e.g., under age 5) and therefore may be triaged for medical home ASD evaluation.
• Consider directly referring to autism specialists when there are significant elements of the history (past medical, developmental, social, family) that require additional input, such as:
  • Known vision impairment, deaf/hard of hearing, significant cognitive or gross motor delay, psychiatric symptoms, prematurity, trauma history. 
Doing the Evaluation
• Inform families/caregivers ahead of time that visits may be longer and they should bring toys and snacks for their child.
• Bring some toys/items that can be used to interact with the child, such as cause/effect toys, bubbles, small cars, small dolls for pretend play.
• You may want to (or be required by payors to) use a structured behavioral observation.  Many of these observational tools require a training course and some come with a specific kit.  
Documenting the Evaluation and Recommendations
• Payors or agencies may require specific documentation elements, e.g., formal DSM-5-TR checklist, or a specific standardized tool (i.e. – Childhood Autism Rating Scale-2 [CARS-2] or Autism Diagnostic Observational Schedule -2 [ADOS-2]) for the child to qualify for covered supports and services like ABA.
• Document past medical, developmental, social and family history elements.
• Describe family/caregiver reported behaviors as reported in the DSM-5 focused ASD history.
  • Pro Tip: consider documenting by DSM-5-TR categories (A1-3, B1-4)
• Document a complete physical exam, including a detailed neurological exam.
• Describe observed behaviors from the structured behavioral observation and informal observations.
• Summarize outside information that is relevant to your evaluation and differential diagnosis.
• Synthesize your findings and articulate why the child meets criteria for ASD and why it is not better explained by another diagnosis, alone.
• If the child meets criteria for other diagnoses, provide those diagnoses as well.
• If the child does not meet criteria for ASD, describe what condition(s) (e.g., expressive language disorder, anxiety, etc.) the child does meet criteria for, and provide specific recommendations for that.
• Outline next steps for the child with recommendations for clinical, educational and community resources.
• Establish follow-up schedule to monitor developmental progress, co-occurring conditions and child/family well-being. 
Supports and Services
• Refer to services based on the specific clinical and social needs of the child.
• Clinical referrals: Speech therapy, occupational therapy, physical therapy, ABA, individual or family counseling.
• Educational referrals: state Early Intervention system (age 0-3), Early Childhood Special Education Program (ages 3-5), or Special Education program (ages 5+).  Note that educational referrals should not be contingent on an ASD diagnosis.
• Community referrals: family support/mentor groups, state resource programs.
• Additionally information about supports and services for children on the autism spectrum is available via this tip sheet.
How Will you Bill for the Work you Do?
• Document time according to typical billing standards.
• If a standardized tool is used, this may be able to be billed separately as a procedure.
• Time billed related to the procedure code should not overlap with time spent on clinical documentation for billing purposes  (i.e. – you can’t double bill 35 min spent administering and scoring the CARS2 with the time for your visit).