This article originally appeared in the fall 2022 edition of the Minnesota Family Physician magazine.
by Nicole Berning, MS, BCBA
Currently, the American Academy of Pediatrics (AAP) recommends universal autism spectrum disorder (ASD) screening for children ages 18 and 24 months (1). Although ASD can be reliably diagnosed by 24 months, the average age of diagnosis in Minnesota is 5 years 3 months, according to a recent study by the Minnesota-Autism and Developmental Disabilities Monitoring Network (MN-ADDM) (2). The MN-ADDM is part of the Autism and Developmental Disabilities Monitoring Network, a group of programs funded through the Centers for Disease Control and Prevention (CDC) to estimate the number of children with ASD and other developmental disabilities living in different areas of the United States.
The MN-ADDM’s research also found that over 40% of those children (diagnosed after 24 months) had a concern regarding their development noted prior to age three but did not go on to receive a medical diagnosis until much later. Later diagnosis leads to delays in accessing early intervention services. This is concerning, since research has shown early intervention increases overall IQ, builds language and communication skills and teaches self-regulation behaviors. The American Academy of Family Physicians notes that children with more optimal outcomes receive earlier, more intensive behavioral interventions (3).
ASD is the fastest growing developmental disability in America. One in 36 eight-year-old children in Minnesota is diagnosed with ASD. This is higher than the national average of 1 in 44. As a family physician, you are often the first point of contact for families. You can identify children who might need extra help in their development before they go to school. It is best to NOT take a “wait and see” approach. Accessing early intervention (4) can make a tremendous difference in the child’s quality of life and learning and their later development.
The CDC notes: “Early identification of ASD and other developmental disorders often allows access to interventions, which may lead to improved outcomes. Formal screening of every child for ASD during pediatric visits has been recommended by the AAP at 18 and 24 months.” The CDC also created a case study (5) to help physicians improve their screening of ASD.
Despite these recommendations, Minnesota Medical Assistance Child and Teen Checkups (C&TC) data indicates that only 10-12% of children eligible for C&TC services received the recommended ASD screening at 18 and 24 months or social-emotional screening at 18 months.
Developmental and social-emotional screening should be occurring at 9-, 18- and 30-month visits, with ASD specific screenings at 18 and 24 months or any time a concern is identified. The Modified Checklist for Autism in Toddlers-R/F (M-CHAT-R/F) (6) Revised with follow-up is the most common ASD screening tool used in clinical settings. It takes five minutes to complete and only two minutes to score. Parent report tools, like the M-CHAT, often have the advantage of being brief, inexpensive and practical in the clinic or office setting. The M-CHAT does not require training to administer and is available in multiple languages.
In an effort to mitigate the shortage of trained clinicians to evaluate ASD and the subsequently long wait lists, the AAP has recently recommended the use of a Level 2 screener (7) (e.g., Screening Tool for Autism in Toddlers (STAT), Rapid Interactive Screening Test for Autism in Toddlers RITA-T, Tele-ASD-PEDS) after a positive screen on a Level 1 screener before referring children on for a full comprehensive evaluation for ASD. This way, a series of screening tools are used to enrich the population of children referred for further evaluation.
Key indicators of ASD in young children include a lack or loss of functional communication, little to no eye contact, no response to name, restricted behaviors or interests and being easily upset by small changes in routine. For more signs and symptoms, visit the Minnesota Autism Resource Portal: Signs and Symptoms (8) and view the C&TC Manual on Screening for Autism Spectrum Disorder (ASD) in Toddlers (9) for billing and additional instructions.
Identification and Referral
Generally, as a family physician, you are within your scope of practice to diagnose a child with ASD. It is important to do so immediately and definitively. If it is outside your clinic’s scope or the child is demonstrating complex co-occurring symptoms, such as anxiety, depression or seizures, refer the child on for a comprehensive evaluation. A medical diagnosis opens the door to access services and supports.
It is critical to explore both medical and educational pathways (10) to make sure a child gets everything they need. Some services, like Medical Assistance and Social Security, require a medical diagnosis for eligibility. An educational determination allows students to access special education services through the public school system. View the section on Finding Supports Early (11) on the Minnesota Autism Resource Portal website for specific referral information and forms.
Families are often not aware of all the potential supports available. You empower families by helping them access evaluation and services. In Minnesota, we have a variety of peer to peer (12) organizations, support groups (13) as well as advocacy (14) and legal supports (15). Families report (16) connection to these groups as being vital in helping to navigate a complex system of supports.
Intervention and Follow-up
The Early Intensive Developmental and Behavioral Intervention (EIDBI) Benefit is a medical benefit for children with ASD and related conditions. EIDBI offers a range of services, including 1:1 or group intervention, family caregiver training and counseling and coordinated care conferences. EIDBI services can be provided in person or via telehealth. Services are provided in home or in centers. Providers can also go into the community or other environments, such as childcare settings or schools, to offer support. Use the EIDBI referral form (17) to help families access EIDBI services.
In addition, encourage families to contact their local county office or tribal office (18) to request a MnCHOICES assessment and support plan (19).
A number of factors impact families accessing services, including a lack of awareness on the resources available, long wait lists, transportation barriers, lack of insurance and cultural considerations. If you are confident and comfortable sharing information on ASD, families will be more likely to follow up on referrals and access the support their child needs.
DELAYS AND DISPARITIES
Race, ethnicity and social drivers of health are associated with inequities in early identification of developmental delays and disabilities. It is critical to provide resources on developmental milestones and child development to families in a variety of formats and languages, including:
- The Milestone Tracker app (20) from the CDC: Learn the Signs, Act Early
- The First Steps: Pathway to Playing, Learning and Growing (21) resource found on the Minnesota Autism Resource Portal website (22)
- Information on Head Start, early childhood family education or community education classes
In addition, guidance should include how to promote development through maximizing interactions during everyday activities like talking, reading, singing and playing with the child. Review the specific skills the child should typically develop before the next visit.
- Lipkin P, Macias Michelle. Promoting optimal development: identifying infants and young children with developmental disorders through developmental surveillance and screening. Pediatrics. 2020;145(1):e20193449.
- Minnesota-Autism and Developmental Disabilities Monitoring Network, addm.umn.edu.
- Sanchack KE, Thomas CA. Autism spectrum disorder: primary care principles. Am Fam Physician. 2016;94(12):972-979A
- Centers for Disease Control and Prevention, “Early Intervention and Education for Autism Spectrum Disorder – A Closer Look,” http://www.cdc.gov/ncbddd/actearly/autism/case-modules/early-intervention/03-closer-look.html.
- Centers for Disease Control and Prevention, “Autism Case Training: Case Study Part I,” http://www.cdc.gov/ncbddd/actearly/autism/case-modules/screening/02-case-study1.html.
- M-CHAT, mchatscreen.com.
- Johnson CP, Myers SM, Clinical Council on Children With Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183–1215.
- Minnesota Autism Portal, “Signs and symptoms,”mn.gov/autism/about-autism/signs-and-symptoms.
- Minnesota Department of Human Services, “Child and Teen Checkups (C&TC),” www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=DHS16_150092.
- Minnesota Department of Human Services, “Overview of Medial Identification and Educational Determination of Autism Spectrum Disorder,” edocs.dhs.state.mn.us/lfserver/Public/DHS-6751M-ENG.
- Minnesota Autism Resource Portal, “Find Supports Early,” mn.gov/autism/find-supports-early.jsp.
- Family Voices of Minnesota, familyvoicesofminnesota.org.
- Minnesota Autism Resource Portal, “Support Groups,” mn.gov/autism/supports/support-groups.
- Minnesota Autism Resource Portal, “Advocacy,” mn.gov/autism/supports/advocacy.
- Minnesota Autism Resource Portal, “Legal,” mn.gov/autism/supports/legal.
- Connell E, Martin Rogers N, Peterson A. Mapping the Journey of Families Who Have Children with Autism Through Social and Human Services, Medical, and Education Systems. Wilder Research and Minnesota Department of Human Services, 2020.
- Minnesota Department of Human Services, “EIDBI Referral Form,” surveys.dhs.state.mn.us/snapwebhost/s.asp?k=161297465368.
- Minnesota Department of Human Services, “Minnesota Tribal and County Directory,” mn.gov/dhs/people-we-serve/adults/health-care/health-care-programs/contact-us/county-tribal-offices.jsp.
- Minnesota Department of Human Services, “MnCHOICES Assessment: Steps to Get Help,” edocs.dhs.state.mn.us/lfserver/Public/DHS-7283-ENG.
- Centers for Disease Control and Prevention, “Learn the Signs. Act Early.”
- Minnesota Department of Human Services, “First Steps: Pathway to Playing, Learning and Growing,” edocs.dhs.state.mn.us/lfserver/Public/DHS-6751L-ENG.
- Minnesota Autism Resource Portal, “Pathway to Services and Supports,” https://mn.gov/autism/pathway-to-services-and-supports.jsp.
Nicole Berning, MS, BCBA, is a board-certified behavior analyst and works with the Minnesota Department of Human Services as the Autism Clinical Lead for the Early Intensive Developmental and Behavioral Intervention (EIDBI) benefit.