Autism Awareness and Acceptance Month:

Written By Dr. Nyssa Petersen Ventura, PhD, Clinical Psychologist

Embracing Neurodiversity and Enhancing Outcomes Through Early Identification and System Improvements

April is Autism Awareness and Acceptance Month, a time when the global community comes together to increase public awareness about autism spectrum disorder (autism), promote acceptance, and foster support for individuals with autism. Autism is no longer considered rare, and recent studies indicate that nearly 1 in 36 children meet diagnostic criteria (Maenner et. al, 2023). This month serves as an important platform for educating the public, challenging misconceptions, and advocating for the rights of autistic people. It is a period marked by a commitment to embracing neurodiversity and recognizing autism not solely as a disorder but as a different way of being.

 

Neurodiversity-Affirming Views of Autism

Neurodiversity is the concept that neurological differences should be recognized and respected as any other human variation, including conditions like autism, ADHD, dyslexia, and more (Singer, 1999). A neurodiversity-affirming view of autism challenges traditional narratives that pathologize the condition and instead promotes the idea that autistic individuals possess unique strengths and perspectives. This perspective encourages society to move from trying to "cure" autism to creating environments that are inclusive and supportive of neurodiverse individuals. It emphasizes celebrating differences and providing accommodations that allow autistic people to thrive.

 

The Importance of Early Identification of Autism

Early identification of autism is critical. It can lead to earlier access to interventions, which are most effective when started at a young age. These interventions can greatly improve communication, social skills, and adaptive behaviors, enhancing the quality of life for individuals with autism and their families (Danilou, Pandis, & Znoj, 2022). Additionally, early identification and support can reduce the likelihood of co-occurring mental health issues, which are prevalent among autistic individuals, with studies indicating that 70-92% have a co-occurring mental health diagnosis (Dreiling et al., 2022). By addressing the needs of autistic children early on, we can help mitigate the challenges they may face and promote positive developmental trajectories.

Equity factors such as language barriers, living in rural areas, mental health conditions, and parent education status significantly impact the likelihood that an autistic individual will be diagnosed in early childhood (Hyman et al., 2020). These disparities highlight the need for targeted strategies to ensure equitable access to diagnostic services.

 

Training Community Providers: The Autism Center of Excellence (COE) Initiative

In Washington State, the Autism Center of Excellence (COE) training, facilitated by the Washington Health Care Authority (HCA) and Washington State Medical Home Partnerships Project (MHPP), represents a significant step toward addressing the gap in autism care. This program enables community providers, such as pediatricians, primary care providers, nurse practitioners, in addition to specialty providers such as licensed psychologists, psychiatrists, and developmental pediatricians, to diagnose autism in within their medical home. Diagnosing autism across the lifespan is not only meaningful but can also dramatically influence long-term outcomes.

 

Addressing Systemic Challenges in Autism Diagnosis

Despite the benefits of the COE training, several challenges exist that can hinder its effectiveness (Buzbee, 2023):

    1. Specialist Capacity vs. Demand: The demand for autism evaluations exceeds the capacity of specialists (Johnson et al., 2023). Training primary care providers to diagnose autism is a partial solution, but even with this system change, wait times remain excessive.

    2. Complex Patient Presentations: Patients presenting to community Autism COE providers often have complex needs that exceed the scope of the COE training. Parents may not understand the difference between a COE-trained provider and a specialist, seeking help for their child wherever they can find it.

    3. Disparities in Autism Care Access: There are significant racial and socioeconomic disparities in access to autism care in the United States (Johnson et al., 2023). Families with literacy challenges and lacking developmental histories often turn to community providers who may not have the necessary time or assessment tools for complex cases.

    4. Provider Burnout: The overwhelming demands placed on providers can lead to burnout, with many COE colleagues ceasing to provide autism evaluations or leaving the profession entirely. This crisis exacerbates healthcare access issues and increases health disparities (AAMC, 2020).

 

Enhancing Access to Autism Evaluations in Primary Care

To improve access to autism evaluations in primary care and address these challenges, several strategies may be considered:

    • Training and Education: Primary care providers can be equipped with more comprehensive tools and training to recognize the early signs of autism and manage complex cases. This can be achieved through onsite training sessions and the use of free virtual training and consult groups, such as COE certification, Project ECHO groups, which are offered by institutions like the University of Washington (UW), Seattle Children’s Hospital, and the Washington Health Care Authority (HCA).

    • Screening Protocols: Standardized screening protocols recommended by professional health organizations, such as the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) and the Ages and Stages Questionnaires (ASQ), are critical in identifying autism spectrum disorder during key early developmental milestones (American Academy of Pediatrics, 2021). To capture those who may go undetected—such as individuals with less typical presentations, including girls or those without intellectual or speech impairments—screening should be expanded to include school-aged children using additional measures like the Autism Spectrum Quotient (AQ-10) and the Checklist for Autism Spectrum Disorder (CASD).

    • Collaboration with Specialists: Strengthening referral networks with developmental specialists is essential to ensure timely evaluations and the development of shared care models. This is where the collaborative SMART (School Medical Autism Review Team) approach has proven effective. Implemented in several regions across Washington state, SMART involves a cross-disciplinary sharing of autism evaluation components between school psychologists, speech-language pathologists, early intervention providers, pediatricians, clinical psychologists, and other qualified COE providers. This collaborative effort maximizes evaluation efficiency, accuracy, and quality by leveraging the expertise of various disciplines.

    • Parental Guidance and Support: Providing parents with information on developmental milestones and encouraging them to share observations about their child's development can be instrumental in the early detection of autism.

    • Support Systems and Sustainable Practices: Developing systems within healthcare practices that reduce the administrative burden on providers is crucial. Advocating for compensation models that recognize the additional time required for autism evaluations can help prevent provider burnout.

    • APCCT Tool: Implementing the Autism Primary Care Complexity Triage Tool (APCCTT; Buzbee, 2023), which was developed through a literature review and collaborative feedback from various autism care providers, can effectively triage patients. This tool aids in organizing patient care and ensures that individuals are matched with the appropriate level of care.

    • Community Outreach: Engaging in community outreach initiatives is vital to raise awareness about the signs of autism and the importance of early evaluation. Targeted outreach programs and additional resources for underserved communities can help bridge the gap in autism care. Initiatives like the Wenatchee Brave Warrior Project and the Chelan Douglas Health District play an important role in facilitating targeted outreach, offering support, and connecting families affected by autism to essential local services.

 

Mental Health and Autism in Adults

The intersection of mental health conditions and autism is a significant area of concern. Recent studies have revealed that a considerable proportion of adult psychiatric clients—ranging from 18.9% to 70%—meet criteria for autism (Nyrenius et al., 2022, 2023). This striking data highlights the importance of training mental health professionals to recognize signs of autism and to incorporate considerations of autism into their diagnostic processes.

 Individuals on the autism spectrum are particularly vulnerable to a range of mental health challenges (Croen et al., 2014). There are heightened rates of suicide, substance abuse, depression, and trauma among this population, which necessitates an individualized approach to care and support. Studies have shown that autistic adults have a higher risk of suicidal thoughts and behaviors compared to the general population. Additionally, they may be more susceptible to substance abuse as a coping mechanism for social and sensory challenges or as a result of social influences. Depression is also notably more common among adults with autism, often due to chronic experiences of social isolation, unemployment, and other stressors. Furthermore, the prevalence of trauma, whether from bullying, misunderstanding, or sensory overload, is a serious concern that can have long-term psychological effects.

 Given these complexities, mental health services must adapt to meet the unique needs of autistic adults. This adaptation includes comprehensive training for mental health providers, the development of specialized intervention strategies, and a system of care that is sensitive to the nuanced ways in which autism can intersect with mental health conditions. By recognizing and addressing these co-occurring issues, we can improve the quality of life and outcomes for adults on the autism spectrum.

 Moving Forward with a Unified Approach

Autism Awareness and Acceptance Month calls for reflection on the progress made and the work that remains. Through increased involvement with Autism COE and SMART programs and addressing systemic issues, healthcare providers can better serve the neurodivergent community. It's not only about spreading awareness but also about taking concrete actions to support autistic individuals and their families. The combined efforts of training community providers, implementing efficient tools like the APCCT, and advocating for systemic changes aim to create a healthier and more inclusive society. These efforts can ensure that autistic people receive the support and acceptance they deserve, ultimately leading to improved outcomes and a higher quality of life.

 In conclusion, Autism Awareness and Acceptance Month is a time to reaffirm our commitment to neurodiversity, early identification of autism, and system improvements that support both individuals with autism and the providers who care for them. By embracing these initiatives, we can create a world that values diversity and offers every individual the opportunity to thrive.

                                                                                                                                                                           Community Autism Resources:

 

Acknowledgment

I wish to express my sincere appreciation to Heather Buzbee, PMHNP, a fellow COE provider at SeaMar Community Health, for creating the Autism Primary Care Complexity Triage Tool (APCCTT). Her passion and unwavering dedication to empowering providers have significantly advanced care access for the autistic population, and I am grateful for her valuable contribution to this important issue.

 

Author Information

Nyssa Petersen Ventura, PhD, Clinical Psychologist

Written on April 21, 2024

References:

    1. American Academy of Pediatrics. (2021). Screening tools. https://www.aap.org/en/patient-care/screening-tools/

    2. Association of American Medical Colleges. (2020). The complexities of physician supply and demand: Projections from 2018 to 2033.

    3. Buzbee, H. (2023). Autism Primary Care Complexity Triage Tool (APCCTT). Copyright 2023 by Heather Buzbee, PMHNP, PhD candidate.

    4. Croen, L. A., et al. (2014). Psychiatric and medical conditions among adults with ASD. Paper presented at the 14th Annual Meeting of the International Society for Autism Research (INSAR), Atlanta, GA.

    5. Daniolou, S., Pandis, N., & Znoj, H. (2022). The Efficacy of Early Interventions for Children with Autism Spectrum Disorders: A Systematic Review and Meta-Analysis. Journal of clinical medicine, 11(17), 5100. https://doi.org/10.3390/jcm11175100

    6. Dreiling, N. G., Cook, M. L., Lamarche, E., & Klinger, L. G. (2022). Mental health Project ECHO Autism: Increasing access to community mental health services for autistic individuals. Autism, 26(2), 434-445. https://doi.org/10.1177/13623613211028000

    7. Hyman, S. L., Levy, S. E., Myers, S. M., Kuo, D. Z., Apkon, S., Davidson, L. F., ... & Bridgemohan, C. (2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1).

    8. Johnson, N. L., Fial, A., Van Hecke, A. V., Whitmore, K., Meyer, K., Pena, S., Carlson, M., & Koth, K. A. (2023). A scoping review of diagnosis of autism spectrum disorder in primary care. Journal of Pediatric Health Care. https://doi.org/10.1016/j.pedhc.2023.04.003

    9. Maenner, M. J., Warren, Z., Williams, A. R., et al. (2023). Prevalence and characteristics of autism spectrum disorder among children aged 8 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020. MMWR Surveillance Summaries, 72(SS-2), 1–14. https://doi.org/10.15585/mmwr.ss7202a1

    10. Nyrenius, J., Eberhard, J., Ghaziuddin, M., Gillberg, C., & Billstedt, E. (2022). Prevalence of autism spectrum disorders in adult outpatient psychiatry. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05411-z

    11. Nyrenius, J., Eberhard, J., Ghaziuddin, M., Gillberg, C., & Billstedt, E. (2023). The ‘lost generation’ in adult psychiatry: Psychiatric, neurodevelopmental and sociodemographic characteristics of psychiatric patients with autism unrecognised in childhood. BJPsych Open, 9(3), e89. https://doi.org/10.1192/bjo.2023.13

    12. Singer, J. (1999). Why can't you be normal for once in your life? From a 'problem with no name' to the emergence of a new category of difference. In M. Corker & S. French (Eds.), Disability Discourse (pp. 59-67). Open University Press.

Dr. Nyssa Petersen Ventura, PhD, Clinical Psychologist
Previous

Autism: Quick Facts and Common Questions