The road to diagnosis can be long and uncertain. For some, the news of diagnosis brings validation and hope. For others, it can lead to even more uncertainty. In either situation, it is important to seek support and guidance to navigate a path forward. It can be difficult to muddle through all of the information, emotions, and clinical options that often accompany news of the diagnosis, however, the true path forward begins with understanding.
In order to meet criteria for a diagnosis of Autism Spectrum Disorder (ASD), an individual must present with developmental concerns in the following areas: persistent deficits in social communication and social interactions across multiple contexts and restricted and/or repetitive patterns of behavior, interests, or activities. These concerns must be present in early development, cause clinically significant impairment, and not be accounted for by intellectual disability or global developmental delay (American Psychiatric Association, 2013). Though this clinical definition is very clearly defined, each individual given a diagnosis of ASD is different. Everyone has unique strengths and struggles, and the discussion around diagnosis should highlight these complexities. Initially, conversation about the diagnosis should highlight an individual’s strengths while also providing valuable information in areas where they may need support.
Initial news of a diagnosis can bring about a variety of emotions and it is important to hold space for those feelings. In the same way each individual presents uniquely, interpretation of a diagnosis is nuanced by each family and individual’s circumstances and perspectives. Ultimately, this diagnosis provides information that helps to understand an individual and their needs. It is also a roadmap to identify and gain access to a variety of supports that will help them to thrive in their daily lives. It does not change who the child or individual is or imply they will lead any lesser quality of life. As parents and practitioners, it is our job to change the narrative around an ASD diagnosis by helping shift the conversation from symptoms that need to be remediated or cured, to unique and individual areas requiring our acceptance and support to thrive.
Next steps following diagnosis should focus on understanding the person’s individual needs and meet them where they are. The path for a young child will differ from a school aged child and even more so for adults.
Pre-school age children will benefit from early intervention through a birth to three program offering Autism specific interventions. Treatment models utilizing principles of Applied Behavior Analysis are evidence-based. They have demonstrated effectiveness in the acquisition of skills and reduction of harmful behaviors. Examples of ABA interventions comprise Natural Environment Teaching (NET), Discrete Trial Teaching (DTT), Pivotal Response Training (PRT), and Skill Based Training (SBT) (National Autism Center 2006-2017). Because Autistic children are diverse and unique, it is best to have an approach that is flexible and comprehensive, including Occupational Therapy and Speech and Language programs. Young children, prior to entering school, can receive services in their home or in a clinic. Some centers with an innovative approach are offering social work support to siblings and parents. Clinics typically can offer comprehensive treatment including social skills groups, even for little ones 18-months to 2-years-old. The recommended dose of hours for very young children whose developmental milestones are below that of their chronological age peers are 25 to 40 hours. Although this may be daunting, the hours are spread throughout multiple environments of home, school, and the community.
School-age children will require an Individualized Education Plan (IEP) to access supports at school which include many of the components described for young children. Because autism is a neurodevelopmental disorder that can affect learning, not a learning disorder per se, an ABA approach is beneficial for teaching school readiness skills, as well as organizational skills and executive functioning skills. ABA accomplishes this by breaking down larger goals and tasks into smaller manageable pieces. Social interaction will remain an area requiring direct targeted teaching. Enrolling in a social skills group will be pivotal for developing reciprocal social interaction skills.
For adults, life might begin to make sense and they are better able to navigate the world in which they live. Not only are they able to understand themselves clearly, people in their lives also become understanding of them. Many teens, young adults and mature adults struggle with social disconnection creating feelings of anxiety and depression. Seeking therapy in these situations is critical to well-being and health and a therapist with training and/or experience in ASD is recommended. Support groups for adults allow for sharing of resources as well as providing a social connection.
Regardless of where this diagnosis takes place in the lifespan, understanding and accepting it, accessing proper supports, and adapting the environment is crucial in supporting each individual in fulfilling their potential.
Salli Shon, LCSW, BCBA, LBA-CT, is a licensed clinical social worker and the managing BCBA at Autism Care Partners center in Avon, CT. Salli conducts diagnostic evaluations as well as providing social work support to the families. Caitlan Freeman, MS, BCBA, LABA, is a parent of an autistic child and the Managing BCBA at the Autism Care Partners center in Worcester, MA.
Autism Care Partners operates a several multi-disciplinary centers across the Northeast with the mission to empower families to reach their potential through early diagnosis and exceptional, innovative, interdisciplinary care. More information can be found on their website at www.autismcarepartners.com or by calling (800) 679-3609.
American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders: DSM-5. 5th ed. Washington, D.C.: American Psychiatric Publishing.
May Institute (2006-2017). National Autism Center’s Evidence Based Practice and Autism in the Schools – Comprehensive behavioral treatment for young children.
LeafWing Center (August 20,2019). What constitutes effective intervention for individuals with Autism? The National Research Council’s report on effective treatments for Autism still stands True. https://leafwingcenter.org