INSAR Day 2: The Lancet Commission reports on the future of autism care and research

doctor holding a stethoscope

Despite the increase in autism awareness and prevalence in recent years, many autistic people around the world do not have access to the care and services they need to reach their full potential. Late last year, the Lancet Commission brought together clinicians, researchers, self-advocates and parents to create a report of recommendations that can improve quality of life for autistic people and their families worldwide. In Thursday’s INSAR panel discussion, the authors of the report shared their key findings and recommendations.

According to the report, one important consideration when thinking about delivering quality care for autistic people is the heterogeneity, or diversity, of autism. Autism manifests in a variety of symptoms that can vary widely in presentation and severity from person to person. Symptoms may change during the life span, with a person experiencing one co-occurring condition (like constipation) in early childhood and another (like depression) in adulthood. This is often complicated by the interaction of symptoms. For example, a child who has difficulty communicating may experience irritability or aggression. A holistic approach to care that takes into account the heterogeneity of autism symptoms is essential.

Another important consideration is the need to have autism-informed care in community settings. People with autism have unique needs that should be addressed in their primary care, mental health care and dental care, but often, providers lack the specialized training and knowledge they need to serve the autistic community. This is a problem because most of the world has access to very few psychiatrists and specialist providers like developmental pediatricians, child psychiatrists, occupational therapists and speech and language therapists who deliver needed services to people with autism.

Due to this lack of access to specialty care, it’s important to take a stepped care approach where the most accessible providers in local communities are given the training and resources to care for autistic patients. If needed, autistic people and their families can then be referred to seek intensive, specialist-delivered treatments.

“Oftentimes, those without professional training or self-efficacy in the care of people with autism are involved in the delivery of care to autistic individuals,” said Paul Carbone, M.D., professor in the Department of Pediatrics at the University of Utah. “With the rising prevalence of autism, we’ll have to get used to the fact that most evaluations, interventions and care, especially in the area of co-occurring conditions, will not be delivered by autism experts but rather by generalists. We hope generalists can be trained, supported and have access to autism experts.”

To deliver quality care, primary care providers and generalists need to have support from autism specialists so that they can better adapt standard clinical guidelines to meet the needs of people with autism. They also need funding and reimbursement for strategies that help make care more accessible for people with autism, like longer visits, family navigators and care coordination between providers. Lastly, it’s important that care professionals adopt personalized treatment plans that take into consideration the autistic person’s needs and preferences, their family’s needs and preferences, and the resources available in their community.

In the future, greater investment is needed to develop and refine practical community-based interventions that improve the lives of people with autism. Training non-specialists and frontline workers to deliver autism interventions is a step in the right direction and will allow autistic people around the world to access responsive care sooner.

For example, the World Health Organization, with the support of Autism Speaks, recently launched the Caregiver Skills Training (CST) for Families of Children with Developmental Delays or Disabilities, a program that empowers non-specialist community providers to teach parents and caregivers the day-to-day skills they need to help their children reach their full potential. Caregivers are taught to use everyday play and home routines as opportunities to build their child’s communication, engagement, positive behavior and daily living skills. This program is an important step to providing needed education to families and providers in low-resource communities around the world.

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