What care providers offer the autistic community
Reconciling broken trust
What Care Providers Have to Offer the Autistic Community
Repairing broken trust
The relationship between care providers and the autistic community has a tense history, marked by ethical failures and the promotion of allistic ideals. More recently, autistic advocates are re-designing ethical care provision. Care providers must earn back the trust of autistic individuals and their families by aligning their approaches with neurodiverse-affirming principles. This means more than affirming language; it means centering the autistic person's experience as a valid and worthwhile experience that is not accommodated by our societal structure. A justice-oriented lens per say.
Designing care to comfort neurotypicals
Autism care as a field emerged in the 1940s, heavily influenced by societal attitudes and limited understanding of neurodiversity. Early interventions often relied on institutionalization or behavior modification methods, prioritizing conformity over individuality. Practices such as Applied Behavioral Analysis (ABA) are criticized for focusing on compliance at the expense of the emotional and psychological well-being of the autistic child. Essentially, ABA, as originally designed, focused on alleviating our neurotypical society's discomfort with autistic people and encouraged the suppression of autistic traits and experiences (also called masking), which causes long-term mental health and physical health complications.
ABA therapy was first developed in the 1960s by Dr. Ivar Lovaas, whose initial studies used behaviorist principles to "teach" autistic children. While the approach improved certain skills, it was rooted in aversive methods, such as punishment and negative reinforcement. Early practices even included unethical methods like electric shock therapy, as highlighted in this historical analysis. A federal court judge ruled in 2021 that a school in Massachusetts, for individuals with high support needs, is still allowed to use electric shock therapy. This ruling was made despite the FDA’s push to ban the use of these devices in this exact circumstance in 2021 and the United Nations’ obvious statement that electric shock therapy is inhumane. In fact, in 2025 the FDA continues to push for this ban. Today, most interventions are shifting towards practices that emphasize consent, emotional well-being, and autonomy, thanks to autistic advocates, many of whom experienced these harmful practices directly. Modern iterations of ABA and alternative therapies are shifting towards a more person-centered approach, incorporating input from autistic individuals and emphasizing collaboration and consent.
Insurance is gatekeeping care
One hang-up in gaining access to non-ABA therapies is insurance coverage. While the evaluation and diagnostic process is usually covered by insurance, the support needs identified in these evaluations are not always covered. Families seeking holistic and affirming therapies often face barriers due to limited or no insurance coverage for alternative approaches. For example, a mental health therapist cannot bill out therapy services for someone diagnosed with autism alone. The autistic person must have a secondary diagnosis covered by insurance for that provider to bill under. Otherwise, the autistic person must pay out of pocket. Tangibly, this means we cannot be preventative. Instead, we are waiting for the autistic person to develop other diagnoses, often due to their autistic experience in a non-autistic society, before insurance recognizes a need for therapeutic support. Since poverty is both a cause and consequence of mental health problems, a lack of insurance coverage for care related to autism puts autistic people at risk for financial hardship and additional mental health diagnoses. A frustrating feedback loop. Addressing these disparities requires systemic reform to ensure equitable access to diverse, evidence-based therapies that prioritize the unique needs of autistic individuals.
Finding affirming support today
Today, a multidisciplinary approach to autism care is standard, involving providers who work collaboratively to support and listen to the voices of autistic individuals.
Medical Providers:
What They Do: Medical providers are often the first point of contact for identifying autism in children and adults. They screen for autism symptoms during routine checkups using tools like the Modified Checklist for Autism in Toddlers (M-CHAT) and other standardized measures. Providers also address parental concerns and monitor developmental milestones, referring families for comprehensive neurodevelopmental evaluations conducted by specialists, such as developmental pediatricians or licensed psychologists.
Examples: A pediatrician may refer a nonverbal child for an evaluation and connect parents with speech therapy resources or recommend sensory-friendly accommodations.
Medical providers also support co-occurring conditions commonly seen in autistic individuals, such as anxiety, ADHD, or gastrointestinal issues. Additionally, they guide families on navigating treatment options, including therapeutic and educational interventions.
Insurance: Services provided by medical providers are generally covered under insurance, especially if linked to diagnostic evaluations or managing medical conditions. Referrals from your PCP often go a long way with insurance and can help you access other types of care. Talk to your doctor about the referral process.
Occupational Therapists:
What They Do: Occupational therapists play a vital role in supporting autistic individuals by focusing on daily living skills, sensory processing, and emotional regulation. Specific areas of support include:
Sensory Processing: They help individuals navigate sensory challenges through techniques and tools that promote comfort and engagement in their environments.
Fine and Gross Motor Skills: Therapy to enhance coordination and motor planning to support tasks like handwriting, dressing, or participating in recreational activities.
Communicating Needs: Teach strategies to express preferences and needs effectively, often in collaboration with speech therapists.
Social Relationships: Build foundational skills for interaction and play, tailored to the individual’s interests and abilities.
Feeding Therapy: Address sensory or motor-based feeding challenges to support healthy nutrition and eating habits.
Emotional Regulation: Teaching self-regulation techniques to manage stress and adapt to changes out of a child’s control.
Insurance: Occupational therapy is often covered under autism-related diagnoses, though coverage may vary by state or plan of course.
Physical Therapists:
What They Do: Physical therapists (PTs) provide essential support for autistic individuals by addressing motor development, physical discomfort, and improving overall coordination. Their work includes:
Gross and Fine Motor Skills: Development of strength and coordination to support activities such as walking, running, and manipulating small objects.
Posture and Balance: Enhance stability and postural control to improve participation in daily and recreational activities.
Pain Management: Address physical discomfort related to motor challenges or musculoskeletal issues.
Promoting Physical Activity: Encourage enjoyable and meaningful physical activities that align with sensory preferences to support fitness and friendships.
Insurance: Physical therapy is commonly covered under developmental or autism-related diagnoses, though specifics vary by plan.
Speech and Language Pathologists:
What They Do: Speech and language pathologists (SLPs) are essential in helping autistic individuals develop communication skills and empower them to express themselves in individualized and unique ways. Key areas of support include:
Speech Development: Assist children whose speech patterns may develop atypically, focusing on clear articulation and fluency.
Identifying Underlying Disorders: Diagnose speech and language disorders that may coexist with autism, such as apraxia or receptive/expressive language delays.
Augmentative and Alternative Communication (AAC): Introduce tools like communication boards, apps, and devices that enable nonverbal, minimally verbal, or selectively verbal individuals to communicate effectively and independently.
Social Communication: Teach pragmatic language skills, such as understanding nonverbal cues, conversational turn-taking, and context-specific communication, while respecting individual preferences and styles. Some autistic individuals want to have these skills so that they can choose to use them, or not.
Empowering Self-Expression: Support individuals in finding their unique voices, whether verbal, signed, or assisted by AAC, to build confidence and autonomy.
Insurance: Frequently covered, especially for young children with developmental delays.
Mental Health Therapists:
What They Do: Mental health therapists provide essential support to autistic individuals by addressing emotional well-being, fostering self-advocacy, and offering trauma-informed care. Their work is often tailored to the unique needs and experiences of autistic individuals. Key areas of focus include:
Trauma-Informed Care: Recognizing the impact of past trauma, including medical trauma and experiences with stigma, and creating safe therapeutic spaces that prioritize trust and understanding.
Emotional Regulation through Sensory Integration: Teaching strategies to manage stress, anxiety, and sensory overload while promoting resilience and self-awareness.
Social and Interpersonal Skills: Supporting the development of social connections in ways that align with the individual’s preferences and comfort levels.
Addressing Co-Occurring Mental Health Conditions: Providing interventions for depression, anxiety, and other mental health concerns that are common among autistic individuals.
Autism-Affirming Therapy: Traditional talking therapy approaches may not resonate with autistic individuals. Therapists can instead focusing on methods that affirm and support neurodiversity (Dr. Alice Nicholls article). Ask me about Dungeons and Dragons Group Therapy!
Family-Centered Interventions: Helping families understand and support their autistic loved ones, fostering a more inclusive and understanding home environment (Autism Spectrum News).
Insurance: Coverage depends on whether the therapy addresses co-occurring conditions like anxiety or depression. Often, a secondary diagnosis is required for coverage.
Alternatives to ABA:
Why: Alternatives to ABA focus on affirming and individualized approaches that emphasize emotional connection, autonomy, and holistic development. These evidence-based methods include:
DIR/Floortime: This new therapy engages children through emotional and relational capacities using play and child-led interactions.
Play Therapy: Helps autistic children process emotions and develop self-expression through structured and unstructured play.
Mindfulness-Based Interventions: Supports emotional regulation and reducing stress through mindfulness exercises tailored to sensory needs.
Relational Frame Theory (RFT): A cognitive-behavioral approach enhancing communication and understanding of relationships.
Therapeutic Role-Playing Games: Build social skills and teamwork in a fun and safe environment.
Animal-Assisted Therapy: Using interactions with animals to promote sensory regulation, emotional well-being, and social engagement.
Insurance: Coverage is less consistent for alternatives to ABA, with many families needing to advocate for these approaches or pay out-of-pocket.
Parental Education:
Parent’s Role: Parental education and training empowers families to support their children’s growth and advocate for their needs. Evidence-based programs and strategies for parental education include:
Understanding Autism: Provides parents with a thorough understanding of autism, including its strengths, challenges, and diverse presentations, to promote acceptance and informed decision-making.
Skill-Building Workshops: Offers training sessions to help parents develop strategies for managing behaviors, enhancing communication, and supporting daily living skills in a neurodiverse-affirming manner.
Emotional Support: Equips parents with tools to navigate the emotional aspects of raising an autistic child, such as building resilience, accessing peer support networks, and addressing their own mental health needs.
Collaboration with Providers: Teaches parents how to effectively communicate with therapists, teachers, and healthcare providers to create a cohesive support team for their child.
Home-Based Interventions: Guides parents in implementing therapeutic strategies and accommodations at home to generalize skills and create a supportive environment.
Insurance: Sometimes covered when integrated into broader therapy plans or programs. Individuals with higher support needs may qualify for state level support.
School Systems:
What They Do: Schools play a critical role in supporting autistic individuals by providing inclusive education and tailored interventions. Key areas of focus include:
Individualized Education Plans (IEPs), Section 504 Plans, and Behavioral Intervention Plans (BIPs): Collaborate with families to develop personalized plans that outline goals, accommodations, and services to support the student’s academic and social success.
Inclusive Practices: Implement strategies to foster an environment that celebrates neurodiversity, such as sensory-friendly classrooms and flexible teaching methods (UC Davis Education Research).
Teacher Training: Providing educators with professional development on autism-specific strategies, including managing sensory sensitivities and supporting communication needs.
Technology Integration: Using assistive technologies and digital tools to enhance learning opportunities and communication for autistic students.
Earning back trust
It is important to recognize that neurodevelopmental diagnoses, like autism, are not "curable." The goal of treatment for autism differs from conditions like depression for example, where symptom reduction is often a primary focus. For autistic individuals, the goal is not to eradicate differences but to empower individuals to thrive by addressing barriers and enhancing support. When accommodated, empowered, and self-attuned, autistic individuals often thrive. Distress and difficulty functioning are not inherent to the autistic experience but are symptoms of a lack of support and understanding.
Neurodiverse affirming perspectives should illicit a shift for care providers to focus on affirming and individualized interventions that celebrate neurodiversity rather than viewing it as something to "fix." It is essential that care providers reckon with the harm that has been caused to the autistic community by actively centering the autistic experience. Listen to advocates and autistic clients (see my other article). Allow them to guide us towards their support needs. Learn how to adapt your practices and ask the right questions.
Shout out to these folks for changing ABA for the better:
Autistic Self-Advocates Network, Dr. Catherine Lord, Dr. Lynn Koegel, Behavior Analyst Certification Board who updated their ethical guidelines and requirements, Dr. Greg Hanley, and every autistic advocate who has spoken up about their experiences and offered a better way forward.