2022 Report to Congress
on Supportive Services for Individuals with Autism
Report to the U.S. House of Representatives Committee on Appropriations (H. Rept. 117-9)
Research on Supportive Services that are Beneficial to Improved Outcomes for People with Autism
![Mental Health professional comforts a patient during group support session](/images/publications/report-to-congress/2022-research.jpg)
The combination and degree of characteristics can differ greatly from one autistic individual to another, resulting in a diverse array of service needs within the autism community. The following is a list of examples of the many kinds of services and supports that are accessed by individuals with autism and their families. Some services are related to health while others are related to other aspects of well-being. References are provided regarding the current evidence base in support of beneficial outcomes for each service type. Some of these services have a strong evidence base supporting their use. In contrast, other service types are newly emerging and may have little supportive evidence currently available. Some of these services are covered under health insurance programs or other federal or state benefits; some are provided at low or no cost by federal, state, and local programs; and some are not covered by health insurance or federal or state benefits and can only be accessed by paying out of pocket. Services are listed by type, but it is important to note that there are many variations in approach, intensity, duration, and setting for each type of service.33
- Diagnostic services
- Applied behavior analysis (ABA) and other behavioral interventions
- Speech/language therapy and augmentative and alternative communication (AAC) supports
- Assistive technology, specialized medical equipment, and associated services and training
- Technology-based, robot-assisted, and artificial intelligence interventions
- Physical therapy
- Occupational therapy and sensory integration therapy
- Academic services and supports
- Mental and behavioral health services and supports
- Self- and family-directed services and supports
- Family/systems navigation
- Caregiver-, family-, and peer-mediated interventions
- Family and caregiver supports
- Support, social, and community groups
- Peer-to-peer mentoring and autistic-led support groups
- Caregiver supports and respite care
- In-home caregivers, aides, and nursing care
- Dietary and nutritional support
- Therapies for sleep disorders
- Environmental assessment and modifications
- Transportation vehicle modifications
- Empowerment, education, and advocacy training and services
- Healthcare transition (HCT) services
- Employment services, vocational rehabilitation services, job coaching
- Housing support services
- Remote services
- Recreational therapies
- Complementary and alternative interventions (e.g., music, animal-assisted, emotion regulation, and mindfulness therapies)
Diagnostic services
Timely delivery of diagnostic services is essential for linking individuals on the autism spectrum with needed interventions, services, and supports that improve outcomes in social and communication domains.34-37 Individuals who may be on the autism spectrum are typically referred for a diagnostic assessment, which is typically conducted through a structured parent interview using instruments such as the Autism Diagnostic Interview-Revised (ADI-R) and a clinician assessment of the individuals using the activity-based Autism Diagnostic Observation Schedule-Second Edition (ADOS-2).38 However, long waitlists for diagnostic services have contributed to a two-year difference between the earliest signs of ASD and the average age of diagnosis,39 with minoritized populations waiting even longer to be evaluated due to inequities in availability of health services.40 CDC surveillance data shows improvements in earlier diagnosis of young children in recent years, though ASD identification still varies based on race and ethnicity, geographical location, and the presence of co-occurring ID.41,42 The recent development of telehealth tools such as the TELE-ASD-PEDS has enabled remote diagnostic evaluation of children with signs of autism.43 Such tools have been shown to be acceptable for both parents and practitioners,44-46 and may lead to further improvements in early and timely diagnosis for children with ASD.
For adults, the ADOS-2 is the standard instrument used for diagnosis of ASD. However, limited knowledge is available on the manifestations of autism in adults, and misdiagnosis is common due to a lack of standardized diagnostic criteria for adults with suspected ASD and lack of access to early medical records and developmental history that inform ASD diagnosis.47,48 Additionally, there is a lack of providers who are trained in diagnosing ASD in adults, resulting in even longer delays.48 Additional research is needed to improve our understanding of how compensatory strategies, masking, and/or camouflaging of autistic traits may affect clinical presentation and diagnosis.49,50 Improvements to diagnostic tools and services for both children and adults will help to ensure that all individuals on the autism spectrum can access services and supports that improve health and well-being.
Applied Behavior Analysis and Other Behavioral Interventions
Applied behavior analysis (ABA) and other behavioral interventions can be helpful in addressing emotional and behavioral issues in autism. ABA and therapies based on its principles are the most commonly researched and practiced behavioral intervention for autism.51 Current ABA practices include the Early Start Denver Model (ESDM), Discrete Trial Training (DTT), Pivotal Response Treatment (PRT), and Early Intensive Behavioral Intervention (EIBI). The basic premise of these methods is positive reinforcement of desired behaviors to develop necessary skills and reduce undesirable or harmful behaviors, such as self-injurious behaviors. A meta-analysis of ABA studies showed that ABA resulted in significant improvements in socialization, communication, and expressive language.52-55 Naturalistic Developmental Behavioral Interventions (NDBIs) are based on ABA principles but use a strengths-based model to teach skills in a naturalistic environment, such as during play or other daily activities, with natural rewards.56 Research indicates that NDBIs can help to support social communication, language, and play skills development.57 Relationship Development Intervention (RDI) is a behavioral intervention that focuses on building social and emotional skills, with primary caregivers trained as the primary therapist. Further research on RDI is needed, but one study indicates beneficial outcomes.58 Another relationship- based behavioral intervention is Floortime, in which therapists and parents engage children through the activities each child enjoys. Research has shown benefits of Floortime for emotional development in children with autism.59 These interventions are sometimes covered by insurance.
Speech/Language Therapy and Augmentative and Alternative Communication Supports
Spoken language can be a significant barrier to communication for individuals on the autism spectrum.61-63 Speech-language therapy can help people with ASD improve their abilities to communicate and interact with others.64 This type of therapy focuses on verbal skills, such as correctly naming people and things, and better explaining feelings and emotions. Speech-language therapy can also teach nonverbal communication skills, such as using sign language or picture symbols to communicate (Picture Exchange Communication Systems, or PECS). A randomized controlled trial from 2012 found that speech and language therapy in a sample of school-aged children with and without autism had the greatest benefit for learning pragmatic skills, such as conversational ability, classroom learning, and social communication.65 For older children and adolescents with developmental language disorders (which may include those with autism), research indicates that one-on-one intervention with a speech language pathologist can help to improve language skills.66 Several states have begun enacting laws that require health insurers to provide coverage for autism-related healthcare services, which includes speech therapy and Augmentative and Alternative Communication (AAC) devices.
AAC supports serve as communication alternatives to speech. Some AAC supports are in the form of communication software applications that can be run on personal devices such as tablets or laptops that help individuals with autism communicate and maintain communication autonomy.67 Research studies have demonstrated multiple benefits of using AAC for people with autism, including basic access to communication using nonspeech methods, requesting functions, and increased social communication.68-71 Under IDEA, school districts are responsible for providing assistive technology, such as AAC, as described in a child’s IEP. Learning to use AAC usually requires some kind of support or training from a professional at first. Medicaid, HCBS waivers, or private health insurance may cover the cost of AAC software, devices, and services for eligible adults with autism. The state Assistive Technology Act program provides information on these programs in each state and other mechanisms for acquiring devices, including cash loans, rent-to-own, or ways to obtain previously owned devices.
Assistive Technology, Specialized Medical Equipment, and Associated Services and Training
Individuals with autism may require assistive technologies and/or specialized medical equipment. They and their caregivers must receive education, training, and services to learn how to use and operate these devices. Examples of the types of equipment may include: AAC devices (see section on speech- language therapy above), epilepsy/seizure monitoring devices, other wearable sensors, Continuous Positive Airway Pressure (CPAP) machines to address sleep conditions,72,73 technologies that focus on executive function and/or socialization skills, as well as swings and other sensory/motor equipment.
Technology-based, Robot-assisted, and Artificial Intelligence Interventions
Scientific evidence for the effectiveness of technology-based or technology-enhanced interventions for the autistic population has increased. Telehealth, which has become widespread since the start of the COVID-19 pandemic, uses technology such as video-conferencing to allow specialists and care providers to deliver interventions remotely (see also Remote services below).74 Extended reality (XR) technology encompasses both virtual and augmented reality, giving users an immersive and interactive environment. Rapid advancements in XR technology over the past few years have led to its application in interventions for individuals on the autism spectrum to improve social communication skills, emotion regulation and control, and daily living skills, with positive results.75-77 Virtual reality and covert audio coaching systems have also helped autistic adults develop and hone work and vocational skills and expand access to employment services.78-81 Robot-assisted technology and artificial intelligence (AI) have also been used in recent years to assist individuals on the autism spectrum with developing learning and social skills.82-87
Physical Therapy
Physical therapy (PT) is often used by people with autism who have pervasive gross motor impairments such as poor visuomotor and bilateral motor coordination, as well as postural impairments in static and dynamic balance.88-91 Impaired motor skills and atypical functional connectivity of the sensorimotor system have also been identified in older adults with autism.92 PT includes activities and exercises that build motor skills and improve strength, posture, and balance. Different types of PT that have been shown to be effective for children with autism include dance movement therapy93 and aquatic programs.94 Research has also shown that PT can help address gross motor delays in young children with autism.95 Motor, physical activity, and exercise interventions have shown positive outcomes in alleviating social, behavioral, cognitive, and motor impairments in children and adults with autism.96-98
Occupational Therapy and Sensory Integration Therapy
Occupational therapy (OT) and sensory integration therapy can help to address the range of challenges experienced by people with ASD, including participation in and performance of activities of daily living, education, work, leisure, and social activities.99-100 For children with autism, OT programs often focus on play skills and learning strategies. OT services for autistic adolescents and adults often involve relevant sensory integration, relationship- building, executive functioning, self-care, and social skills interventions.101 OT services are the second- most used services by autistic people in the United States, behind speech and language therapy.102 Sensory integration therapy, a form of OT that helps to improve a person’s sensitivities to sensory stimuli that may be overwhelming or cause discomfort, has been shown to be effective in autism and has demonstrated positive outcomes for improving individually generated goals of functioning and participation.103,104 OT has also been shown to positively influence dental health visits.105 Autism-specific training for occupational therapists could help to improve confidence among providers and incorporation of current evidence-based practices (EBPs).100
Academic Services and Supports
Autistic students have a wide array of academic services and support needs at varying levels of schooling, from early childhood programs all the way through post-secondary education. Interim services and supports can start early, when a child is suspected of having a delay or disability and the family is waiting for the local agency responsible for implementing IDEA to determine eligibility. Once a disability is diagnosed, children can continue to receive individualized services and supports to meet their needs and fully participate in the full range of activities and services. School-age children can receive services such as speech-language, psychological, physical, and occupational therapies; academic tutoring and peer-mentoring; as well as assistive technologies, in the school setting. School-based support can also be provided through schoolwide approaches and frameworks such as Positive Behavioral Interventions and Supports (PBIS) and anti-bullying programs.
Research indicates that the most common special education service received by students with ASD is speech-language therapy.106 Focus on these skills is vital, as recent studies have found that social communication skills and behaviors as early as kindergarten can predict future school outcomes for ASD students.107,108 A recent review on the effectiveness of school-implemented interventions for autistic students from preschool to high school found that EBPs help students gain necessary academic and social communication skills. A combination of focused interventions, such as reinforcement of desired behaviors, discrete trial teaching, and visual supports, were found to be promising.109 Recent studies, however, find that not all schools fully implement EBPs.110-112
Particularly for older elementary and high school students, executive functioning and self-management are important skills to learn, and research shows the built education environment can play a universal design role in optimizing outcomes for these skills in students.113,114 Project-Based Learning (PBL) is an approach that can help prepare students for the workforce by building teamwork and interpersonal skills and allow them to explore their learning and communication styles.115 Autistic students may continue to need academic support as they transition into and navigate through postsecondary education.116-122 A recent analysis found 74 postsecondary institutions that offer autism-specific support across 29 states.123 Expansion of these programs to meet the needs of autistic students at two-year institutions124 will help to foster additional opportunities for academic success.
Mental and Behavioral Health Services and Supports
Mental and behavioral health services and supports can help improve the health and well-being of people with ASD. Mental health conditions are common among individuals with ASD.125-128 Research has suggested that autistic children experience a greater number of Adverse Childhood Experiences (ACEs) in their family and community environments that may later impact their mental and physical health.129-131 ACEs include issues such as family divorces, deaths, abuse, neglect, family illness, incarceration, substance use, discrimination, and poverty. Mental and behavioral health supports early in life, trauma- informed care, as well as social and family supports and supports provided through social workers, can play a critical role in helping to address ACEs and prevent mental health issues later in life. Such supports are important across the lifespan as well, to address mental and behavioral health challenges that persist or arise during adolescence or adulthood, such as alcohol or substance misuse.
Co-occurring mental health conditions such as anxiety, depression, and attention deficit hyperactivity disorder (ADHD) are common issues that autistic individuals report as greatly impacting quality of life and thus have been the subject of growing emphasis in the field.132 Access to high quality mental and behavioral health supports to address these needs among autistic individuals is essential. Mental health care for people with ASD can take many forms, including psychotropic medication, psychotherapy, or behavioral management.133-135 Cognitive behavioral therapy (CBT) is a common approach, which has been shown to be efficacious in autistic people.136-139 Dialectical behavioral therapy (DBT), which targets emotion dysregulation, is being used to treat eating disorders, suicidality, and self-injurious behavior in autism.140-142
Recent studies have also focused on "masking" or "camouflaging" behaviors in ASD, which include strategies individuals may implement to hide their autistic characteristics. Studies suggest that these behaviors are associated with mental health challenges such as depression, stress, and anxiety.143-148 Studies have also suggested that autistic people are at higher risk of suicide than the general population. Progress is being made in understanding risks for suicide and developing tailored approaches to suicide prevention in autistic individuals.149-152 Work is also being done on ways to foster elements of positive psychology (e.g., resilience, self-compassion, optimism, etc.) among autistic individuals.153,154 Additional research efforts are working to bridge the gap between behavioral and mental health through the validation of new tools and instruments. One such validated instrument, called the Assessment for Concerning Behavior (ACB), can help to facilitate symptom recognition by both autistic people and professionals.155 The Substance Abuse and Mental Health Services Administration (SAMHSA) has published a toolkit to support children with IDD who have experienced trauma.
Research has also focused on the efficacious delivery of mental and behavioral health supports. Autistic people who are not receiving care through the medical home model,156,157 and those who have co-occurring ID, are more likely to experience unmet mental health care needs.158,159 Project ECHO Autism, an online learning and guided practice model, has shown the potential for community-centered mental health models to increase access to needed services.160,161
Self- and Family-directed Services and Supports
Self- and family-directed services and supports prioritize participant choice, control, and flexibility. Under this type of model, the individual and/or family is involved in all service planning and decision-making activities, which gives the individual and family greater control over their care.162 As the availability of services and Medicaid waivers increase, autistic individuals and families are able to coordinate care and be more involved in decision making. For families of adults with DD, research finds that participation in a participant-directed program is associated with fewer unmet service needs, increased satisfaction with services, and improved community functioning.163 For families of children with ASD, research demonstrates that families feel empowered and satisfied when allowed to choose their own providers.164 This is associated with lower parental stress and improved family functioning.165 Recent evaluation of families of children with ASD receiving Medicaid waiver services found greater involvement in service planning and coordination and delivery of behavioral interventions for their child.162 Self-directed and person-centered planning is additionally important for adolescents and adults with autism in prioritizing personalized supports and services for transition planning, employment, and community living.166-168
Family/Systems Navigation
Families of children with autism and autistic adults often experience challenges in navigating support and service systems. Family/systems navigation is a case management approach that helps families and individuals identify appropriate services and overcome obstacles (e.g., transportation, language, fear, and stigma) to access necessary diagnostic and treatment services and supports.169-172 Disparities are experienced by low-income and racial/ethnic minority individuals and families in access to autism diagnostic and treatment services.173-175 Research has found that children, particularly those from underserved communities, are more likely to receive diagnostic services when their primary care clinic utilized family navigation management.176,177 More broadly, research findings indicate that family and systems navigation services are associated with improved child and family outcomes.178,179
Caregiver-, Family-, and Peer-mediated Interventions
Studies show that caregiver-, family-, and peer- mediated interventions can facilitate social, cognitive, and language development in children on the autism spectrum.180-183 These interventions can also be cost-effective and reinforce family and peer support. A parent-mediated intervention targeted to joint attention outcomes in toddlers with ASD has shown positive benefits.184 Mind the Gap (MTG) is an intervention focused on parent engagement that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. A recent pilot feasibility study showed promising results for MTG, and a randomized controlled trial is currently underway.185
Peer-mediated interventions are used to increase social skills in children with autism and have also shown beneficial outcomes.186,187 Peer-mediated interventions engage typically developing peers as social models to improve social initiations, responses, and interactions. For example, there is increasing research on effective strategies to teach peers to be communication partners for individuals with DD using AAC.188-190 Future research can further explore how training involving peers and the whole family (including siblings) can be helpful for facilitating the development of skills for children on the autism spectrum.191,192
Family and Caregiver Supports
Family and caregiver supports provide support for the parents and other family caregivers of autistic people or those with high support needs. In focusing on the needs of a family member with high support needs while also balancing other responsibilities, family caregivers can experience stress, burnout, and reduced mental and physical well-being. Family and peer mentoring supports are intended to enhance social support and improve caregiver well-being, but additional research is needed to demonstrate the efficacy of such programs. A review of randomized and cluster randomized controlled trials of peer mentor programs for parents and caregivers suggests that mentorship programs provide neither benefit nor harm. However, those who participate in such programs have indicated that they are valuable.193 Peer mentor training programs, such as the Military Spouse Online Autism Relocation Readiness (MilSOARR) mentor training program, have shown promising benefits for caregivers.194,195
Support, Social, and Community Groups
Support, social, and community groups, as well as group therapy can be of great benefit to people with autism and their families. Autistic people experience high rates of loneliness.31 Community support groups for autistic people can increase social participation and assist in skill-building in a variety of areas, including leisure, recreation, and activities of daily living. A systematic review of the evidence on social participation for autistic adults found that quality of life is facilitated primarily by social skills groups and other types of support groups.196 For children with autism, social skills groups have been shown to improve overall social competence and friendship quality.197
Peer-to-peer Mentoring and Autistic-led Support Groups
Peer-to-peer mentoring and autistic-led peer supports have also become an increasingly common tool to provide social support, especially in college settings, and emerging research suggests beneficial outcomes.198.199 Social support services are also frequently used by caregivers of individuals with autism,200-202 where they receive both emotional and informational support.203 Sibling groups are less common but can be helpful in providing support and teaching skills for engaging with their autistic siblings.204 Research suggests that social networking sites and online groups can provide important social support for individuals with autism and their families, allowing them to communicate and engage with others in a comfortable way, obtain information, and share their experiences with the community.205-207
Caregiver Supports and Respite Care
Caregiver supports and respite care provide short term care for a child or adult that grants relief for primary caregivers. Research indicates that caregivers of children with autism may experience impaired mental health, including anxiety and depression,208,209 a poorer quality of life and well-being, and higher levels of stress as compared to caregivers of typically developing children.210 Respite care services can be beneficial to caregivers of individuals with autism in providing support, a break from parenting demands, and allowing time for the caregiver to care for themselves.
Studies have found that the number of hours of respite care families receive is positively related to improved marital quality, as parents reported reduced stress.211,212 In a study of single mothers of children with autism, respite care was also found to be beneficial for maternal outcomes.213 Some parents have reported using acute hospital services to as an entry point to accessing respite care. Barriers to respite care are often at a systems level, as many parents are not knowledgeable about the services available to them. Parents wishing to receive respite care may also face financial barriers and long waiting lists.214
In-home Caregivers, Aides, and Nursing Care
There is very little research on autism services provided by in-home caregivers, health aides, or nursing care. Though many family caregivers provide primary or supplementary care for autistic individuals, a recent study found that most healthcare providers do not meaningfully involve family caregivers as integral components to delivering person-centered care to autistic individuals.215 As described above, the use of health aides, nursing staff, etc., to provide respite care can be beneficial to both individuals with autism and their primary caregivers.
Dietary and Nutritional Support
Studies have shown that there is a high prevalence of co-occurring gastrointestinal (GI) issues including chronic abdominal pain, constipation, acid reflux, diarrhea, food allergy, and feeding issues in autism.216-220 Feeding disorders, including highly restrictive behaviors known as Avoidant Restrictive Food Intake Disorder (ARFID) or sensory based textural restrictions, are commonly seen and can contribute to nutritional deficiencies.221 Children with autism are five times more likely to have mealtime challenges such as extremely narrow food selections, ritualistic eating behaviors (e.g., no foods can touch) and meal-related tantrums.222
These conditions may require dietary and nutritional support, interventions, and/or dietary supplements (such as vitamins) to help ensure that individuals are getting adequate nutrition.335 Referral by primary care providers to GI or nutrition specialists may be helpful.223 Dietary interventions focused on elimination diets, such as gluten and/or casein-free diets are becoming increasingly popular224,225 and have shown modest clinical effect in treating children with ADHD,226 which shares some features with autism.227 Further research is needed to evaluate the beneficial effects of dietary interventions for people with autism.
Therapies for Sleep Disorders
Studies show that individuals with autism often report sleep problems, with as many as 80 percent of children228 and over 50 percent of adults229 reporting sleep-related issues. These can include symptoms of insomnia and/or circadian sleep-wake rhythm disorders, including difficulty falling asleep, increased sleep onset latency, reduced total sleep time, increased wake after sleep onset, and poor sleep efficiency.230 Subjective methods such as parent report questionnaires and objective methods such as sleep studies performed at specialized sleep clinics, which use physiological measures, are often required to diagnose sleep problems in individuals with autism.231
Therapies for sleep disorders can range from widely researched behavioral and pharmacological treatments232-234 to less researched non-pharmaco-logical interventions (e.g., lifestyle modifications, complementary and alternative medicine), over-the-counter drugs (e.g., antihistamines, melatonin, tryptophan, carnosine, iron, vitamins, and herbal remedies), and nutritional supplements.235 Identifying the specific sleep problem/disorder first and its underlying cause(s) is critical for treatment planning.236 Future research around the neurobiological mechanisms that may underlie poor sleep in individuals with autism can help determine the efficacy and long-term effects of various therapies, as well as help improve the guidelines and clinical use of pharmaceutical and non-pharmaceutical approaches for sleep disorders.
Environmental Assessment and Modifications
Perception of sensory stimuli and processing of information coming from the environment can be a problematic issue in autism. This is highlighted by updates to the DSM-5237 and testimonies of individuals with autism that describe difficulties faced by individuals due to sensory overstimulation or understimulation, and how this can present challenges or limit daily activities.238-240 Environmental assessment and modifications can help to reduce distress and improve quality of life for autistic people. A systemic review on the relationship between autism and the built environment found that three main factors are important to building an autism-friendly space: sensory quality, intelligibility, and predictability/ orientation.241 Modifications to the home environment, such as through interior design and installing safety measures, can improve the well-being of children with ASD and reduce stress in their parents.242 Adaptations to the sensory environment in clinical settings have also shown benefits, including soft lighting, displaying movies, and noise reduction during dental procedures.243
Transportation Vehicle Modifications
Currently, research on positive outcomes associated with transportation vehicle modification is scarce. It is clear, however, that transitioning from one place to another is often unsafe for autistic people without proper supports. For example, some people with developmental delays may exhibit dangerous behaviors inside a moving vehicle that place others at risk for serious injury, such as escaping child restraints, opening the door in a moving car, or other distractions to the driver.244,245 One case study involving parents in Los Angeles County Public Schools revealed that school districts sometimes privatize bus transportation responsibility, but the contracting agencies are not always trained in transporting autistic students or other students with disabilities.246 A Swedish study of over a thousand parents found that students were not being transported according to general safety guidelines, including traveling with unfamiliar drivers and unknown passengers, which could lead to elopement.247 U.S.-based research is needed to determine how many school districts in the country are in compliance with disability transport regulations.
Autistic people often do not receive travel training services, and services to help autistic adults develop driving skills and attain driver's licenses are often unavailable.248 Difficulty with community mobility and driving skills are linked to decreased participation in education, decreased rates of employment, and loneliness and isolation.249,250 Further research that includes the lived experiences of autistic individuals and their caregivers is needed to ensure disability transport competency, develop driver trainings and community mobility skills, and add environmental changes to make transportation for autistic people safer, more inclusive, and more accessible.
Empowerment, Education, and Advocacy Training and Services
The autistic self-advocacy and neurodiversity movement has encouraged and increased conversation around ethical practices for services, policies, and research. Empowerment, education, and advocacy training and services can offer enriching community opportunities, leadership training, and volunteerism. Empowerment and advocacy training can help families learn more about autism and share that knowledge with their community.251 Programs specifically targeted for parents of autistic individuals have been shown to increase parents’ feeling of empowerment, advocacy skills, treatment enrollment for their child and positively benefit child outcomes.252-254 These programs, and the incorporation of culturally grounded approaches, are particularly important and beneficial to minority families, as they may experience increased barriers in access to care and services.255-257 Advocates maintain that those developing services must engage with the neurodiversity movement and align priorities in order to achieve the best possible outcomes for autistic people.258 Additionally, empowerment of families and individuals with autism is essential for promoting rights-based services.259
Healthcare Transition Services
Healthcare transition (HCT) services can help adolescents and young adults stay connected and engaged in their care as they transfer from pediatric to adult healthcare services. These services promote health insurance retention and encourage independent management of healthcare needs. This is especially important for youth with autism, who may have special healthcare needs260,261 and co-occurring psychiatric and medical conditions, such as anxiety/depression, seizures, GI problems, and sleep disturbances.262,263 Unfortunately, transition supports are not yet a basic standard of care for all youth,264 and studies indicate that only a small fraction of transition-aged autistic individuals receive HCT services.265,266 Research has shown that for youth with ASD, access to HCT services is associated with positive social-emotional functioning, which is critical for other positive life outcomes.267
Employment Services, Vocational Rehabilitation Services, Job Coaching
Employment services, vocational rehabilitation services, and job coaching can increase opportunities for employment and improve employment outcomes. National data has shown that many autistic adults are unemployed or underemployed, even when compared to people with other disabilities and in spite of having needed skills and abilities for the workplace.268,269 Barriers to higher rates of employment for autistic adults include employer attitudes, access to services, and social communication in the workplace.270,271
Some individuals with autism receive employment services through government-supported vocational rehabilitation and/or Medicaid waiver programs that assist people with disabilities to prepare for, find, and keep employment.272 Adults with autism are also eligible for services through American Job Centers. Services can also be obtained through private job coaches and placement services.
Best practices in helping autistic adults maintain customized employment involve matching worker skills to the job setting, the job description,273 and adjustment of continued job coaching as the individual progresses.274 Another promising approach is through apprenticeships, which are paid positions that include on-the-job training and mentorship integrated with classroom instruction and usually conclude with the individual earning a nationally recognized credential. Internship programs, such as Project SEARCH, have also been shown to be successful in transitioning people with autism to competitive employment.275 These services are vitally important to teach autistic youth the social and vocational skills necessary to have successful outcomes after leaving the education system.
Housing Support Services
There is currently little research about the effects of different housing options on outcomes and quality of life for people with autism.276 It is clear, however, that there is great need among the autism community for housing support services. The number of young adults living with their aging parents, who may not be able to continue caring for their children in their home, continues to increase.277 A recent survey of parents of autistic adults revealed that support services, including housing, were not accessible, difficult to obtain, and inadequate.278 Autistic people may experience several challenges in independent living, including psychophysical stability and daily living, financial management, and integrated community living and housing.279 More broadly, recent research indicates that individuals with mental, intellectual, or developmental disabilities experience various barriers in the rental housing market, such as receiving negative responses to requests for reasonable accommodations.
Homelessness among the autistic population is a growing cause for concern. Qualitative research indicates that ACEs, identity masking, and ableism in school settings, are among the factors that contribute to homelessness in the autistic population.280 Barriers to accessing services while homeless include experiences of nervousness with large groups,281 a lack of routine and certainty,282 and financial exploitation.283 International studies further identify risk factors of homelessness among the autistic population to include lack of support for co-occurring conditions, lower levels of support for those with less extensive support needs, and loss of employment.284-285 Research conducted in other countries further suggest disproportionately high prevalence of those with autistic traits among people experiencing homelessness.286 U.S.-based research is needed to inform our understanding of the incidence of people on the autism spectrum experiencing homelessness and ways to better support these individuals.
Remote Services
Remote services are extremely helpful to those who cannot access in-person services, whether this is due to living in rural areas, restrictions during the COVID-19 pandemic, or limitations related to disability. A small but growing evidence base demonstrates the feasibility and value of autism behavioral intervention services delivered via telemedicine.287-291 ASD diagnosis via telemedicine is also showing preliminary accuracy and clinical utility,292 as is occupational therapy.293 A systematic review of pre-pandemic remote service utilization found that telehealth has the potential to increase treatment availability, decrease diagnosis waiting times, and aid in neurodevelopmental disability monitoring.294 During the pandemic, caregivers of individuals with DD reported that telemedicine and tele-education were helpful when available and endorsed a need for an augmentation of these remote delivery services.295
Recreational Therapies
Recreational therapies cover the range of therapies that seek to improve the health and well-being of individuals on the autism spectrum through community-based sports and recreation. Research shows that participation in group sports such as soccer, basketball, or tennis can reduce social anxiety and improve social, motor, and communication skills, as well as sleep quality and developmental outcomes.296-302 Results for a golf training program show similar gains in social, communication, motor, and regulatory skills.303 One study also showed that exergaming, or playing video games that require physical activity, is highly enjoyable for individuals on the autism spectrum, and social interaction while gaming may lead to additional increases in the intensity and duration of physical activity.304 Studies are currently underway to test the efficacy of other game-based exercise training programs in promoting the physical and mental well-being of autistic individuals,305 and training programs have been developed to help community coaches engage individuals on the autism spectrum to increase socialization.306 While additional research and larger studies are needed to determine the efficacy of different types of recreational therapies and to improve implementation, community-based sports and recreational activities can be an effective method for improving the overall health and well-being of autistic individuals.
Complementary and Alternative Interventions
There are numerous studies of complementary and alternative interventions for autism, which include animal-assisted, arts (music, art, drama, dance), mindfulness, and yoga therapies. Complementary and alternative approaches have become popular therapies among children and adults on the autism spectrum.307,308 Animals as companions, service animals, and animals in therapy (dogs, cats, and equine therapy) can benefit behavioral skills and social communication, reduce separation anxiety, and support access to employment and community living.309-313 Music and drama therapy may help children with autism improve their skills in several areas, including speech production, verbal communication, theory of mind, and social interaction.314-316 Recent studies and meta-analyses suggest that mindfulness and yoga are promising interventions for improving the mental health and well-being of people with ASD and their families, but further evidence is needed to determine efficacy.317-319 Acupuncture, a form of Traditional Chinese Medicine,320 is being explored as an alternative intervention for people with autism321,322 but further research is needed to establish beneficial outcomes. Massage therapy is also being used to treat hypersensitivity and reduce anxiety in autism,323 as well as sensory-based treatment approaches using weighted blankets and vests.324
Cannabis/medical marijuana is also being increasingly used by people with autism to alleviate conditions such as insomnia, hyperactivity, epilepsy, anxiety, and chronic pain.325 There are only a few studies to date on this topic, and randomized, blind, placebo-controlled clinical trials are necessary to clarify findings on the effects of cannabis and cannabinoids in individuals with ASD is needed to increase understanding of risks and benefits and the efficacy of cannabis for symptom reduction in autism.326