One in 44 children was diagnosed with autism in 2020 (Maenner et al., 2021), or approximately 1.7% of children in the United States (Bridgemohan et al., 2019). Despite increasing autism awareness, parents still express dissatisfaction with care from their primary care physician (PCP; Carbone et al., 2010). One-third of parents expressed concerns with the diagnostic delivery (Crane et al., 2015). PCPs rarely administer ASD screening tools (Carbone et al., 2020).
This is concerning as primary care physicians are usually the first line of contact for families (Rhoades et al., 2007). Some possible reasons for this may be concern about parents’ strong emotional reaction to being told their child has autism, fear of negative consequences from labeling the child, and perhaps hope that the symptoms may reverse. PCPs feel they have inadequate training to assess ASD (Rhoades et al., 2007).
To demonstrate the challenges that many parents experience, we wanted to share a story that a mother, who happens to be a primary care physician, shared with Dr. Reitz and Dr. Romney about her struggle to obtain an autism diagnosis for her daughter. The mother wished to remain anonymous to protect the identity of her daughter.
4I am the mother of twin 4-year-old girls. Shortly after their first birthday, we started noticing that one daughter, I’ll call her “L,” didn’t make eye contact as much as her sister. She’d said a few words by then. I brought it up to her pediatrician at their 15-month visit. She looked up from her computer and said something like, “Look, everyone wants to know if their kid has autism. I can’t answer that. What I can tell you is that she’s meeting her milestones. We’ll check her MCHAT at 18 months.” Okay… I felt a little embarrassed by her response. Maybe I was overreacting. She was meeting her milestones, after all. I felt a little dismissed but also relieved. She must know more about this than I do, right?
We committed to working harder to engage L, who was still playful and interactive, just not as much as her sister. We thought maybe we saw an improvement in her eye contact. She still had just a few occasional words. At the 18-month visit, I brought it up again. Again, the response was pretty dismissive: “She’s on track for her milestones. We’ll check her MCHAT.” It was borderline, but I think she technically passed it, although no one actually reviewed it.
We relocated shortly after that. We got established with a new pediatrician to ask for a speech therapy referral, as L was no longer saying some of the words she used to say. She suggested we start with speech, and if they had any concerns, we could pursue a full autism evaluation, though she didn’t think it looked like autism, either. I really like and respect this doctor and felt heard this time. But I still felt pretty sure that it was something more (perhaps a good time to share that I’m also a family physician).
The waitlist for speech therapy was four months long, so I called Early Intervention, who saw us within a month. They can’t make a diagnosis, but they can assess for the delay and provide services, in our case, in-home speech therapy. She soon after got into outside speech and occupational therapy. The waitlist for an autism evaluation was over a year (not uncommon), so we went out of town to be evaluated by a pediatric psychologist, paying out of pocket.
Receiving a diagnosis of autism in a child is life-changing. It’s jarring when someone calls your child nonverbal. Or when it occurs to you for the first time that she will someday be in Special Education. I went through a grieving process when I discovered she had it. I said that to someone once, and they didn’t understand: “Why would you be grieving? She’s not dying.” And that’s absolutely true, thankfully. But I grieved for her future; her possibilities. And I worry for her constantly. She’s vulnerable. It is a constant juggle to accommodate her needs and her sister’s, all while still trying to live a normal life. But she’s also happy, and affectionate, and delightful. She’s making great strides, and her future is bright. 3
This family experienced struggles that are common among families with a child with autism. A potential approach that would address these concerns would be to use an integrated behavioral health model (Simpson et al., 2021). Integrated behavioral health embeds family therapists or other behavioral health clinicians working alongside physicians and other clinicians in a medical setting. A fully integrated model allows direct collaboration between a behavioral health team and the medical team rather than referring to an outside provider (Simpson et al., 2021). Specifically, integrating a medical family therapist (MedFT) in a medical setting can address a family’s systemic needs with a child diagnosed with autism spectrum disorder. A MedFT focuses on the relationship with the patient while seeking collaboration between and among healthcare providers, the patient, and the patient’s support system. MedFTs can work in many settings. This article aims to help MedFTs approach autism by providing education and advocacy while providing systemic treatment to help families receive family-centered care. It can also serve as a resource for medical family therapists working with families in primary care offices.
Tips for primary care clinicians and behavioral health specialists collaborating to treat children with ASD:
- As a PCP, always offer the child/family as many services as possible. Early intervention is critical, and parents often don’t know what to ask.
- Collaborate with the child’s therapists to discuss ways to make an office visit easier/less traumatic for the child. Speech, occupational, and behavioral therapists often know the child quite well and can provide tips for smoother interactions.
- Offer emotional support to the parents if possible. Caring for a child with autism can often be accompanied by a host of unpleasant emotions, such as guilt, depression, exhaustion, and fear.
- Offer education, when possible, about what to expect in the child’s development and how it will differ from a neurotypical child.
Families with children diagnosed with autism experience high levels of stress and aggravation.
Role of MedFT in the treatment of autism spectrum disorder
While family therapy interventions for autism in primary care have yet to be directly examined, it has been found that family therapy interventions in primary care settings effectively reduce caregiver distress and improve parent-child relationships (Cluxton-Keller et al., 2015). Families with children diagnosed with autism experience high levels of stress and aggravation (Simpson et al., 2021). Other studies have highlighted that when parents perceive a decrease in family-centered care, there is a correlation with increased parent aggravation.
MedFTs integrated in medical settings educate, advocate, and provide therapy, helping increase family-centered care. The following sections will be treated as an autism 101 manual for the medical family therapist.
Diagnosis and screening
Studies have shown that many parents of children diagnosed with autism express dissatisfaction with the diagnosis and screening process (Carbone et al., 2020). Like the mother in the story, many families share a similar concern about their child’s behavior and development being dismissed. This is likely because only 10-20% of PCPs use a formal screening tool (Carbone et al., 2020). The most used tool in primary care offices is the M-CHAT, a self-report questionnaire completed by the parent or guardian. This provides an opportunity for MedFTs to advocate for or do the screening themselves.
Education
Many therapists and PCPs feel inadequately trained to address autism (Carbone et al., 2020; Solomon & Chung, 2012). This lack of education can lead to professionals struggling to answer questions about autism, failing to understand the effects on the family, and struggling to address complementary and alternative medicine (Carbone et al., 2020). A MedFT is well-equipped to provide training while advocating for an inclusive office that can reduce caregiver and patient stress. Strategies for an inclusive office include adjustments to lighting, allowing individuals diagnosed with autism to have alternative seating that is more sensory-friendly, and minimizing wait times.
Empowering parents after diagnosis
MedFTs empower parents after diagnosis because many might start having increased anxiety once they receive the diagnosis. This anxiety can be exacerbated by misinformed patient education that can worsen fears. The MedFT can help parents slow down and experience their emotions. The parent might be grieving the life they envisioned for their child. The parents may need help experiencing the grief process, allowing them to be present with their child and family.
Next, the MedFT can assess the family’s support system. Many families with a child diagnosed with autism have expressed the vital need for a support system (Smith & McQuade, 2021). Families report the need for a village to raise their child diagnosed with autism (Smith & McQuade, 2021). This can be having their family be more supportive or finding support groups. This is an opportunity for a MedFT to invite the extended family into the clinic and help the caregivers express their needs to their family and friends.
Some parents have reported only receiving a pamphlet on autism from the PCP after the diagnosis (Potter, 2016). As it can be overwhelming for them to decide on the best treatment options for their child, a MedFT should equip the families with answers to any questions they may have. MedFTs can start by learning the autism resources available in their community to direct families.
>Online CE: Families Living with ASD: Integrating MFT in Systems
The MedFT does not need to be versed in every autism treatment, but they can help the family understand the different treatment options by helping them analyze the treatments. The MedFT can ask questions to ensure the family participates in care, reflecting best practices. Will insurance cover it? If not, what will it cost? Will my child need to stop current treatments? What are any of the possible side effects? These questions can help guide the family into the best treatment for their family and be sure they explore all options.
As medical family therapists better understand autism, they can advocate, educate, and intervene for families with a child diagnosed with autism. As shared by the mother in her story, there was a lack of support and advocacy for their child. This mother was a primary care physician and was still lost on how to proceed when dismissed. A medical family therapist is well-equipped to support a family with a child diagnosed with autism.
Justin Romney, PhD, LMFT, is an AAMFT Professional member holding the Clinical Fellow and Approved Supervisor designations and is a Clinical Assistant Professor in the Couple and Family Therapy Program in the Kent School of Social Work and Family Studies at the University of Louisville.
Randall Reitz, PhD, LMFT, is the Director of Behavioral Medicine with the St. Mary’s Family Medicine Residency. He co-authored the book Connections in the Clinic: Relational Narratives from Team-Based Primary Care in 2021. He is a Professional member of AAMFT holding the Clinical Fellow designation.
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Bridgemohan, C., Kaufman, B., Johnson, D.M., Shulman, L.H., Zuckerman, K.E. (2019). Caring for children with autism spectrum disorder: A practical resource toolkit for clinicians third edition. American Academy of Pediatrics.
Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40(3). https://doi.org/10.1007/s10803-009-0874-5
Carbone, P. S., Campbell, K., Wilkes, J., Stoddard, G. J., Huynh, K., Young, P. C., & Gabrielsen, T. P. (2020). Primary care autism screening and later autism diagnosis. Pediatrics, 146(2).
Cluxton-Keller, F., Riley, A. W., Noazin, S., & Umoren, M. V. (2015). Clinical effectiveness of family therapeutic interventions embedded in general pediatric primary care settings for parental mental health: A systematic review and meta-analysis. Clinical Child and Family Psychology Review, pp. 18, 395–412.
Maenner, M. J., Shaw, K. A., & Baio, J. (2021). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1
Potter, C. A. (2016). “I received a leaflet and that is all”: Father experiences of a diagnosis of autism. British Journal of Learning Disabilities, 45(2), 95–105. https://doi.org/10.1111/bld.12179
Rhoades, R. A., Scarpa, A., & Salley, B. (2007). The importance of physician knowledge of autism spectrum disorder: results of a parent survey. BMC Pediatrics, 7(1), 1–10.
Simpson, J., Schneider, M., & Zlomke, K. R. (2021). Beyond autism severity: The role of medical providers in parenting/caregiver aggravation. Advances in Neurodevelopmental Disorders, 5, 183-192.
Smith, S. L., & McQuade, H. B. (2021). Exploring the health of families with a child with autism. Autism, 25(5), 1203–1215.
Solomon, A. H. & Chung, B. (2012). Understanding autism: How family therapists can support parents of children with autism spectrum disorders. Family Process, 51(2), 250–264. https://doi.org/10.1111/j.1545-5300.2012.01399.x
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