CAR Research Overview
Autism, by definition, is a complex and varied condition, and no one person's autism is just like another's. In research, we call this "heterogeneity" the wide variation in behavior, genetics, cognition, and brain function that combine to contribute to autism.
The Center for Autism Research (CAR) gathers experts from diverse backgrounds to look at the various aspects of autism. Using this multidisciplinary approach, CAR draws connections that give us a more complete understanding of the causes of autism, how autism presents in its various forms and how to develop interventions, support systems and therapies that we can tailor to a person's specific needs across their lifetime.
CAR's central infrastructure was designed from the outset to facilitate collaboration among researchers from a variety of disciplines across multiple projects. As our understanding of autism has evolved, our scientific disciplines have expanded. Our work today can be clustered into nine major areas:
A focus on the earliest signs of autism is critical for families, so that children can access services and supports as early as possible. In fact, research has shown that when autistic children access autism-specific services by age three, their language, social, and cognitive outcomes are optimized. However, many autistic children miss this window of early intervention entirely because on average, autistic children don't receive their first diagnosis until age four. As a result, CAR researchers are focused on understanding the very earliest signs of autism, in order to use that knowledge to help families access evaluations and services as early as possible.
For example, CAR researchers focus on how to help pediatricians screen all children for autism during their well-child visits, and how to reduce disparities in how many children are screened and how well those screenings work to identify children who need an autism evaluation. We are also working to train pediatricians to diagnose some patients with autism directly, instead of referring them to specialty care which can have lengthy waitlists.
CAR researchers are also working on developing new ways to detect the earliest signs of autism. We are using novel technologies to identify behaviors or other indicators that might be too subtle for humans to easily detect or too cumbersome for human raters to identify within the thousands of children who need to be screened for autism. For example, we are developing computer vision methods that allow us to automatically quantify and calculate the degree to which infants and their caregivers move together in time as they play together. We are also using acoustics to identify early markers for autism within infant sounds and speech.
Finally, we're also using existing methods in new and exciting ways. CAR researchers are using neuroimaging methods to identify brain signatures in children starting from 6 months of age onward that might be associated with autism in children with and without a family history of autism. We are also using machine learning to look within children's electronic health records to identify autism markers that are embedded within the information that's already routinely collected by their pediatricians.
Overall, early detection research at CAR spans many different areas and methods, which all aim to identify autism earlier and reduce wait times for diagnosis, which will help families access autism services sooner.
Guthrie, W, Dudley, J, Brooks, E, Gerdes, M, Levy, SE, Pandey, J, Schultz, RT, & Miller, JS. Accuracy of autism screening in a large pediatric network. Pediatrics. 2019 Oct;144(4):e20183963. PMID: 31562252.
Kim, SH, Bal, VH, Benrey, N, Choi, YB, Guthrie, W, Colombi, C, & Lord, C. Variability in autism symptom trajectories using repeated observations from 14 to 36 months of age. J Am Acad Child Adolesc Psychiatry. 2018;57(11):837-848.e2. PMID: 30392625
Miller, J S. Gabrielsen, T, Villalobos, M, Alleman, R, Wahmhoff, N, Carbone, PS, & Segura, B. The each child study: Systematic screening for autism spectrum disorders in a pediatric setting. Pediatrics. 2011 May;127(5):866-71. PMID: 21482605
Tunç, B., Pandey, J., St John, T,, Meera, S.S., Maldarelli, J.E., Zwaigenbaum, L., Hazlett, H.C., Dager, S.R., Botteron, K.N., Girault, J.B., McKinstry, R.C., Verma, R., Elison, J.T., Pruett, J.R. Jr, Piven, J., Estes, A.M., Schultz, R.T.; IBIS Network. Diagnostic shifts in autism spectrum disorder can be linked to the fuzzy nature of the diagnostic boundary: A data-driven approach. J Child Psychol Psychiatry. 2021 Oct;62(10):1236-1245. PMID: 33826159
Wallis, K.E., Davis Rivera, L., Guthrie, W., Bennett, A.E., Mandell, D.S., & Miller, J.S. Provider responses to positive developmental screening: Disparities in referral practices? J Dev Behav Pediatr. 2021 Jan 1;42(1):23-31. PMID: 32909974
Many autistic individuals experience co-occurring neurodevelopmental, psychiatric, or neurological conditions. The most common of these co-occurring mental health conditions include language disorder, intellectual disability, attention deficit-hyperactivity disorder (ADHD), anxiety, depression, tics, and seizures. Not all autistic individuals experience some or any of these conditions, but they are more common among autistic people than in the general population. CAR researchers seek to understand the biological and cognitive basis of co-occurring mental health conditions in the context of autism. We believe that some of the symptoms of co-occurring mental health conditions can exacerbate the presentation of autistic features and impair daily functioning. Many clinicians find that intervening and supporting autistic youth for co-occurring mental health conditions can have downstream effects on improving daily functioning at school and work that are often attributed to core, diagnostic features of autism. Current CAR projects looking at co-occurring mental health conditions include:
- ADHD: Our work has defined the way co-occurring ADHD can influence both cognitive and daily functioning across home and school settings. We have also partnered with industry to evaluate novel digital treatments for attention and executive functioning as a complementary support to traditional ADHD treatments. Our work is now targeting how ADHD plays a role in self-care skills across the lifespan.
- Anxiety: CAR researchers are seeking to understand the difference between traditional anxiety disorders and the types of anxiety seen in autistic individuals. For too long, anxiety around transitions, routines, and unusual fears have been dismissed as just “part of autism” and gone untreated. CAR's work has put forth new theories about the role of anxiety in autism and how to identify it more accurately, making it possible to design more effective clinical trials and interventions. CAR studies are discovering that autistic children with anxiety have increased activity in the part of the brain known to respond to fear—the amygdala. Ultimately, this finding may be the earliest evidence that there are meaningful, biologically distinct subgroups in autism for which we can optimize treatment. CAR's research in this area also focuses on use of wearable technology to identify physiological signs of stress and anxiety in autistic individuals. This technology may someday help us track anxiety symptoms in autistic individuals who sometimes struggle to put their feelings to words.
- Depression: CAR researchers are working with autistic teens and adults to better understand issues related to depression and quality of life, in order to inform clinical treatment and support.
Herrington, J. D., Miller, J. S., Pandey, J., & Schultz, R. T. Anxiety and social deficits have distinct relationships with amygdala function in autism spectrum disorder. Soc Cogn Affect Neurosci. 2016 Jun;11(6):907-14. PMID: 26865425.
Nuske, H. J., Goodwin, M. S., Kushleyeva, Y., Forsyth, D., Pennington, J. W., Masino, A. J., Finkel, E., Bhattacharya, A., Tan, J., Tai, H., Atkinson-Diaz, Z., Bonafide, C. P., & Herrington, J. D. Evaluating commercially available wireless cardiovascular monitors for measuring and transmitting real-time physiological responses in children with autism. Autism Res. 2022 Jan;15(1):117-130 PMID: 34741438.
Yerys, B. E., Bertollo, J. R., Pandey, J., Guy, L., & Schultz, R. T. Attention-Deficit/Hyperactivity Disorder symptoms are associated with lower adaptive behavior skills in children with autism. J Am Acad Child Adolesc Psychiatry. 2019 May;58(5):525-533.e3. PMID: 31029198.
Yerys, B. E., Bertollo, J. R., Kenworthy, L., Dawson, G., Marco, E. J., Schultz, R. T., & Sikich, L. Brief report: Pilot study of a novel interactive digital treatment to improve cognitive control in children with autism spectrum disorder and co-occurring ADHD symptoms. J Autism Dev Disord. 2019 Apr;49(4):1727-1737. PMID: 30569407.
CAR's Technology and Innovation Lab has forged a path to revolutionize psychological assessment and how clinicians and researchers measure and predict the effectiveness of interventions. The lab has developed and tested a portable system to directly record and digitize all outward expressions of human behavior, using computer vision and machine learning. Known as the "biometric sensor tree," the system can capture and quantify fine-grained and subtle physical and behavioral characteristics, including tone of voice, facial expression, motion and gestures, heart rate, and even brain waves when combined with an EEG. In studies at CAR, this technology was able to detect autism in adolescents and young adults during a 3-minute conversation with 90% accuracy, compared to 83% accuracy when autism experts performed the same task. It also holds promise for providing biobehavioral markers for measuring developmental and treatment related change. With more than a dozen grant funded studies using this technology underway, CAR researchers have high hopes of providing a more precise and sensitive way to capture behavior differences relative to traditional parent report and clinician observation, in a much briefer period of time.
Building off the promise of the biometric sensor tree, CAR has developed an expansive research program on computational behavioral analysis of autistic traits as well as related mental health dimensions (e.g., attention, anxiety, depression). This research leverages advances in computer vision and machine learning to optimize measurement of dyadic social motor coordination, nonverbal social communication cues, motor behavior and imitation, and affective processes. It also includes a focus on providing tools to other researchers so as to democratize computational behavioral research to maximize real-world impact. In addition, CAR researchers have adapted the biometric sensor tree system to measure facial expression, movement, and infant-caregiver synchrony in very young children as a novel tool for early autism detection and developmental characterization.
The computational behavioral analysis program at CAR includes a focus on linguistic and acoustic markers. Our research shows that autism has a distinct acoustic signature in select circumstances. CAR studies are analyzing thousands of audio samples to extract linguistic characteristics or markers that make up a person's vocal signature. This research is accessible to individuals regardless of their verbal abilities: even babies who are later diagnosed with autism have been shown to cry and babble differently. Researchers collect language samples in homes, area preschools, and remotely over the phone. Many interesting findings are emerging such as differences in word choice, pause length, disfluency (use of "uh" or "um" to fill pauses), rate of speech, number of words used to convey information, and pitch - all differentiate autistic individuals from neurotypical peers.
Looking at an individual's use of language and nonverbal communications can help tailor personalized approaches to social communication intervention for autistic people, be use as a prediction and stratifying biomarker and as a more granular and sensitive outcome measures for clinical trials.
Cola, M., Yankowitz, L. D., Tena, K., Russell, A., Bateman, L., Knox, A., Plate, S., Cubit, L. S., Zampella, C. J., Pandey, J., Schultz, R. T., & Parish-Morris, J. Friend matters: sex differences in social language during autism diagnostic interviews. Mol Autism. 2022 Jan 10. 13(1), 5. PMID: 35012645.
Plate, S., Yankowitz, L., Resorla, L., Swanson, M. R., Meera, S. S., Estes, A., Marrus, N., Cola, M., Petrulla, V., Faggen, A., Pandey, J., Paterson, S., Pruett, J. R. Jr., Hazlett, H., Dager, S., St. John, T., Botteron, K., Zwaigenbaum, L., Piven, J., Schultz, R. T., & Parish-Morris, J. Infant vocalizing and phenotypic outcomes in autism: Evidence from the first 2 years. Child Development, 2022 Mar. 93, 478-483. PMID: 34708871.
Sariyanidi, E., Zampella, C.J., Schultz, R.T., Tunc, B. Inequality-Constrained and Robust 3D Face Model Fitting. Computer Vision – ECCV 2020. Lecture Notes in Computer Science. 2020.12354:433-449. PMID: 33135013.
Wang, L., Petrulla, V., Zampella, C. J., Waller, R., & Schultz, R. T. Gross motor impairment and its relation to social skills in autism spectrum disorder: A systematic review and two meta-analyses. Psychol Bull. 2022 May 5. Epub ahead of print. PMID: 35511567.
Zampella, CJ, Sariyanidi, E, Hutchinson, AG, Bartley, GK, Schultz, RT, Tunç, B. Computational Measurement of Motor Imitation and Imitative Learning Differences in Autism Spectrum Disorder. International Conference on Multimodal Interaction. 2021 Dec 17. 362-370.
Autism is known to be influenced by genetics. Having an autistic parent or a sibling significantly increases an infant's likelihood of being diagnosed with autism. Similarly, when one identical twin has autism, it is nearly always the case that the other identical twin will have autism. There are nearly 25,000 genes in each person, with the great majority functioning as the blueprint for brain development and maintenance of neural functions throughout life. The unique genetic differences in everyone contribute to who we become, and interact with our formative experiences to make each of us completely unique as individuals. The same is true for autistic individuals, which is why autism is thought of as a spectrum condition. It is estimated that upwards of a thousand genes contribute to the likelihood that a person will have autism, with no single gene having much influence by itself, and with each autistic individual having a unique collection of predisposing genetic and non-genetic factors. While rapid progress has been made in the last two decades in discovering and validating genes that increase the likelihood of having autism, less than a quarter of total genetic contribution to autism has been discovered.
Discovering and understanding sets of genes that predispose a person to autism is the first step toward understanding biological functions that cause the primary features of autism. This understanding may lead one day to the developmental of new treatments that can address problems that interfere with an autistic person fulfilling their potential and maximizing their quality of life. New techniques for collecting and analyzing large samples of genetic data from patients enable gene discovery that will lead to new diagnostic approaches and more effective treatments. CAR participates in the largest ever study of autism genetics – the SPARK study, funded by the Simons Foundation. This is a consortium of more than 30 sites which each recruit families in their geographic communities. The SPARK study has already discovered and validated more than a dozen new susceptibility genes and researchers around the world are working to understand their biological functions impact on quality of life for autistic individuals. This research will lead to an array of new treatment choices enabling our patients and their families to be at the cutting edge of advances in intervention.
CAR's research team includes neuropsychologists, neuroscientists, neurologists, cognitive scientists, and computational scientists. Our team develops and implements advanced neuroimaging methods and tools to study the structural and functional features of the brain, to better understand the neurobiology of autism. Using various neuroimaging modalities including magnetic resonance imaging (MRI), magnetoencephalography (MEG), and electroencephalography (EEG), we study brain structure and function that are thought to support skills and behaviors related to autism, including social communication, repetitive behaviors, and co-occurring conditions of anxiety, ADHD and language impairment. Our team has identified several early brain-based biomarkers for autism and described neural systems and circuitry that function differently in autism. The ability to identify these markers in the earliest stages of life - when autistic behaviors are established - paves the way for earlier intervention and supports that can help autistic people achieve better long-term outcomes. Identifying biomarkers that can predict treatment success and measure treatment-related changes is also a major emphasis of this program of research.
Yankowitz LD, Herrington JD, Yerys BE, Pereira JA, Pandey J, Schultz RT. Evidence against the "normalization" prediction of the early brain overgrowth hypothesis of autism. Mol Autism. 2020 Jun 18;11(1):51. PMID: 32552879.
Tunç B, Yankowitz LD, Parker D, Alappatt JA, Pandey J, Schultz RT, Verma R. Deviation from normative brain development is associated with symptom severity in autism spectrum disorder. Mol Autism. 2019 Dec 11;10:46. PMCID: PMC6907209.
Clements, C. C., Zoltowski, A. R., Yankowitz, L. D., Yerys, B. E., Schultz, R. T., & Herrington, J. D. Evaluation of the social motivation hypothesis of autism: A systematic review and meta-analysis. JAMA Psychiatry. 2018 Aug 1;75(8):797-808. PMID: 29898209.
Kohls, G., Antezana, L., Mosner, M. G., Schultz, R. T., & Yerys, B. E. Altered reward system reactivity for personalized circumscribed interests in autism. Mol Autism. 2018 Jan 30;9:9. PMCID: PMC5791309./p>
Hazlett HC, Gu H, Munsell BC, Kim SH, Styner M, Wolff JJ, Elison JT, Swanson MR, Zhu H, Botteron KN, Collins DL, Constantino JN, Dager SR, Estes AM, Evans AC, Fonov VS, Gerig G, Kostopoulos P, McKinstry RC, Pandey J, Paterson S, Pruett JR, Schultz RT, Shaw DW, Zwaigenbaum L, Piven J, IBIS Network. Early brain development in infants at high risk for autism spectrum disorder. Nature. 2017 Feb 15;542(7641):348-351. PMID: 28202961.
Human beings are inherently complex. When we talk about studying "autism" at CAR, we recognize that understanding autism means integrating the WHOLE autistic person. Our understanding of neurodiversity cannot be complete without acknowledging other domains of human diversity. Some important factors we consider are: sex assigned at birth, gender identity/expression, race/racism, ethnicity, age, non-profound/profound autism, verbal fluency, socioeconomic status, citizenship/immigration status, bi-/multi-lingualism, physical disability, family structure, access to community resources, mental health, addiction, body size (e.g., BMI), history of interfacing with the court system, education, income, geographic location, trauma history (ACEs), and cultural upbringing. All these factors (and more) influence how an autistic person is treated by others and how they respond. These factors can impact how autistic characteristics are conceptualized in a diagnostic evaluation and how accessible and effective services and supports will be over time. As clinicians at CAR and CHOP, we consider these factors when diagnosing or developing a support plan for autistic children and their families. However, there has not been enough research that rigorously studies these factors to provide guidance to clinicians and improve access and equity of service. As a result, CAR researchers study sex assigned at birth and gender identity factors in autistic people with a goal of creating the evidence clinicians at CAR and elsewhere will need to inform their clinical decision-making. CAR researchers also examine health disparities which impact autism screening practices, diagnostic referrals, and access to evaluations. To support all of this work, we are grateful for our partnerships with local community members and autistic self-advocates to continue improving our recognition of the many important ways that diversity intersects with autism research.
Parish-Morris, J. (2019). Seeing the unseen realities of autism. Lancet Psychiatry. 2019 Sep;6(9):718-719. PMID: 31350209.
Song, A., Cola, M., Plate, S., Petrulla, V., Yankowitz, L., Pandey, J., Schultz, R.T., & Parish-Morris, J. Natural language markers of social phenotype in girls with autism. J Child Psychol Psychiatry. 2021 Aug;62(8):949-960. PMID: 33174202
Harrop, C., Jones, D., Sasson, N., Zheng, S., Nowell, S., & Parish-Morris, J. Social and object attention is influenced by biological sex and toy gender-congruence in children with and without autism. Autism Res. 2020 May;13(5):763-776. PMID: 31799774
Kinard, J., Greene, R.K., Cernasov, P., Kan, D., Parish-Morris, J., & Dichter, G. Bilingualism Predicts Theory of Mind in Adults with Autism. Annual Convention of the American Speech-Language-Hearing Association, Washington, DC. 2021.*Meritorious Poster Award.
Strang, J. F., Meagher, H., Kenworthy, L., de Vries, A. L. C., Menvielle, E., Leibowitz, S., Janssen, A., et al. Initial clinical guidelines for co-occurring autism spectrum disorder and gender dysphoria or incongruence in adolescents. J Clin Child Adolesc Psychol. 2018 Jan-Feb;47(1):105-115. PMID: 27775428.
Autistic children have higher rates of co-occurring medical conditions, including seizures, sleep problems, and gastrointestinal problems, such as constipation and feeding difficulties. Research at CAR has focused on understanding the relationship between co-occurring medical conditions, behaviors, and core symptoms of autism with an aim to improve quality of life through targeted and personalized interventions:
- Selective Eating: CAR researchers are working to develop an intervention to help autistic children learn how to eat new and non-preferred foods. The goal is to support quality of life for families and reduce risk for negative health effects that can result from a narrow diet.
- Sleep Problems: CAR researchers have focused on understanding the impact of sleep problems on child and family function and have evaluated the effects of behavioral and medical interventions to improve sleep for autistic individuals.
- Autism Care Network: CAR researchers partner with clinicians in CHOP’s Autism Integrated Care Program to participate in the Autism Care Network, allowing CHOP to learn from autistic patients and families about which treatment plans are having the greatest impact. The network works with clinicians, researchers, quality improvement leaders, parents, and autistic individuals to identify problems, evaluate interventions, and share knowledge rapidly to improve care in the community.
Kuschner ES, Malow BA. Autism and physical health across the lifespan. Autism. 2021 Apr;25(3):599-602. PMID: 33910389.
Malow BA, Katz T, Reynolds AM, Shui A, Carno M, Connolly HV, Coury D, Bennett AE. Sleep difficulties and medications in children with autism spectrum disorders: A registry study. Pediatrics. 2016 Feb;137 Suppl 2:S98-S104. PMID: 26908483.
Mehari K, Iyengar SS, Berg KL, Gonzales JM, Bennett AE. Adverse childhood experiences and obesity among young children with neurodevelopmental delays. Matern Child Health J. 2020 Aug;24(8):1057-1064. PMID: 32342274.
Timko CA, Herrington JD, Bhattacharya A, Kuschner ES, Yerys BE. Caregiver report of executive functioning in adolescent females with anorexia nervosa or autism spectrum disorder. Front Psychol. 2021 Feb 9;11:586264. PMID: 33633624.
Neumeyer A, Anixt JS, Chan J, Perrin JM, Murray DS, Coury DL, Bennett A, Parker RA, & Farmer JG. Identifying associations among medical comorbidities in autism spectrum disorder Acad Pediatr. 2019 Apr;19(3):300-306. PMID: 30053632.
Intervention research at CAR strives to thoughtfully develop and optimize supports for everyday life and long-term well-being for autistic people across the lifespan. Our treatment development work, pilot feasibility studies, and randomized clinical trials have focused on:
- Skills crucial for managing life tasks and school demands (digital app-based treatment to improve executive functioning)
- Co-occurring conditions that impact daily functioning and can have negative health sequelae (cognitive behavioral treatment for food selectivity, home-based treatment for insomnia)
- Experiences that may uniquely impact autistic individuals in the community (virtual reality program for interacting safely and effectively with police officers)
- Understanding neural correlates of core features of autism that may point toward, if desired by an autistic individual and their family, pharmacological interventions to support development (use of Arbaclofen to target GABA levels/gamma-band oscillatory activity and language processing efficiency; oxytocin to target face processing)
- Access to research participation (clinical and technical protocol to expand inclusion in neuroimaging research for autistic youth with intellectual disability or with no spoken language)
- Partnerships with the pharmaceutical industry to conduct clinical trials of novel medical treatments for core features of autism and co-occurring concerns for which autistic people and their families may seek support
- Parent-delivered treatments, focused on coaching parents and caregivers to support their young child's social communication development (examining short- and long-term outcomes, and virtual and in-person delivery methods)
- Access to family navigators and other community health workers to help families access assessments, interventions, and services for which they are eligible
- Access to flexible, interdisciplinary care models for children with challenging behaviors;
- Development of more sensitive treatment outcome measures using computational behavioral analyses and machine learning
In addition to identifying areas of highest unmet need, CAR scientists approach intervention from a precision healthcare lens, with study designs that elucidate which treatment works for whom, at what point in development, and in which context. There is an emphasis on individual differences that may be associated with treatment response (e.g., sex/gender, race, age, cognitive and language ability, socioeconomic status) as well as health and service disparities that limit access to treatment. Finally, CAR scientists work closely with autistic stakeholders to ensure that treatment designs and outcomes are acceptable and meaningful to the autistic community.
Feinberg E, Augustyn M, Broder-Fingert S, Bennett A, Weitzman C, Kuhn J, Hickey E, Chu A, Levinson J, Sandler Eilenberg J, Silverstein M, Cabral HJ, Patts G, Diaz-Linhart Y, Fernandez-Pastrana I, Rosenberg J, Miller JS, Guevara JP, Fenick AM, Blum NJ. Effect of family navigation on diagnostic ascertainment among children at risk for autism: A randomized clinical trial from DBPNet. JAMA Pediatr. 2021 Mar 1;175(3):243-250. PMID: 33427861.
Kuschner ES, Morton HE, Maddox BB, de Marchena A, Anthony LG, Reaven J. The BUFFET Program: Development of a cognitive behavioral treatment for selective eating in youth with autism spectrum disorder. Clin Child Fam Psychol Rev. 2017 Dec;20(4):403-421. PMID: 28534237.
McCleery JP, Zitter A, Solórzano R, Turnacioglu S, Miller JS, Ravindran V, Parish-Morris J. Safety and feasibility of an immersive virtual reality intervention program for teaching police interaction skills to adolescents and adults with autism. Autism Res. 2020 Aug;13(8):1418-1424. PMID: 32762029.
Vasa RA, Mazurek MO, Mahajan R, Bennett AE, Bernal MP, Nozzolillo AA, Arnold LE, Coury DL. Assessment and treatment of anxiety in youth with autism spectrum disorders. Pediatrics. 2016 Feb;137 Suppl 2:S115-23. PMID: 26908467.
Yerys BE, Bertollo JR, Kenworthy L, Dawson G, Marco EJ, Schultz RT, Sikich L. (2019). Brief report: Pilot study of a novel interactive digital treatment to improve cognitive control in children with autism spectrum disorder and co-occurring ADHD symptoms. J Autism Dev Disord. 2019 Apr;49(4):1727-1737. PMID: 30569407.
Transition to Adulthood
Over 1 million autistic individuals will turn 18 over the next decade. When you transition out of high school, you have opportunities to pick where you may go to school, work, or engage in other daily activities; you may decide where you live, how you engage with others, and how you promote your physical and mental health. These opportunities are paired with the potential challenges of taking on new responsibilities and learning self-advocacy skills. Autistic youth are often navigating these challenges without the educational and formal public supports they have come to rely on while they were in middle and high school. This "services cliff" is a likely contributor to many autistic adults ending up un- or under-employed, dissatisfied with their level of independence in living and transportation, and experiencing significant emotional distress.
CAR researchers, our colleagues across CHOP and Penn, and autistic partners are collaborating to address several obstacles that autistic youth and their families face during this critical transition. We identified executive function as an important skill set to support independent living. We are creating a new measure of independent living skills based on the priorities of autistic stakeholders. In partnership with CHOP's Center for Injury Research and Prevention (CIRP) we are identifying information that autistic youth and parents can use to make decisions about driving vs. other forms of transportation, and best practices for teaching autistic drivers. Our team has also partnered with industry to evaluate the usefulness of virtual reality to teach autistic youth how to interact with law enforcement in a range of situations.
Quality of Life
For over a decade, autistic self-advocates and their families have asked scientists and clinicians to carry out more research that addresses the obstacles to a higher quality of life; however, there is a very limited number of reliable tools that can be used to assess quality of life in autistic people. This issue limits our ability to accurately assess and track client needs, review progress, set priorities, and evaluate service appropriateness and effectiveness. To address this problem, researchers at CAR validated several quality of life surveys for autistic individuals of different ages. The surveys cover topics related to companionship, emotional support, resources, satisfaction with social roles and activities, and sexual function and satisfaction.
Because quality of life is a multidimensional and highly individualized concept, it was important for the surveys to capture the unique circumstances of autistic life, including personal factors like the individual's interests and abilities, and environmental factors, like the resources that are available when help is needed. The surveys are now available for use by providers in hospitals, community clinics and services. Moreover, researchers at CAR are now evaluating obstacles to a higher quality of life during adulthood. Our research highlights that co-occurring presenting problems, such as depression, anxiety, and ADHD, are critical obstacles to a higher quality of life. Autistic adults who rated themselves as experiencing more co-occurring presenting problems also were experiencing a lower quality of life in physical and mental health, where and how they live, and relationships with others.
Bennett, A. E., Miller, J. S., Stollon, N., Prasad, R., & Blum, N. J. Autism spectrum disorder and transition-aged youth. Curr Psychiatry Rep. 2018 Sep 21;20(11):103. PMID: 30238166.
Graham Holmes, L., Zampella, C. J., Clements, C., McCleery, J. P., Maddox, B. B., Parish-Morris, J., Udhnani, M. D., Schultz, R.T., & Miller, J.S. A lifespan approach to patient-reported outcomes and quality of life for people on the autism spectrum. Autism Res. 2020 Jun;13(6):970-987. PMID: 32154664.
Myers, R. K., Bonsu, J. M., Carey, M. E., Yerys, B. E., Mollen, C. J., & Curry, A. E. Teaching autistic adolescents and young adults to drive: Perspectives of specialized driving instructors. Autism Adulthood, 2019 Sep 1; 1(3): 202–209. PMID: 32292888.
Myers, R. K., Labows, C., Yerys, B. E., McDonald, C. C., Sartin, E. B., Mollen, C. J., & Curry, A. E. Transition to adulthood for autistic adolescents: topics discussed by healthcare providers with autistic patients and families. J Adolesc Health. 2022 May;70(5):829-832. PMID: 35165029.