Professionals Write

Families

Carter, E. W., Carlton, M. E., & Travers, H. E. (2020). Seeing strengths: young adults and their siblings with autism or intellectual disability. Journal of Applied Research in Intellectual Disabilities (JARID).

This study seeks to answer the questions: “How do young adults view the strengths of their sisters and brothers with intellectual disability or autism? What individual characteristics are associated with these participants’ ratings?” The study reinforces the advantages of a strengths-based lens and language for IDD and autism for siblings.

Centers for Disease Control and Prevention. (2023a, March 23). Spotlight on a new pattern in racial and ethnic differences emerges in autism spectrum disorder (ASD) identification among 8-year-old children. Centers for Disease Control and Prevention.

Beighton, C., & Wills, J. (2017). Are parents identifying positive aspects to parenting their child with an intellectual disability, or are they just coping? A qualitative exploration. Journal of intellectual disabilities: JOID, 21(4), 325–345.

This qualitative study explores what parents perceive to be the positive aspects of caregiving for a child with intellectual disabilities. The study clarifies those positive aspects as well as considers how reframing parenting experiences can result in an increase in positive well-being and better caregiving experiences among parents of children with intellectual disabilities.

Health Care

National Institute for Health Care Management Foundation (2024). Supporting the Health Care Needs of People with Disabilities

A thoroughly-cited infographic that outlines disability definitions and statistics as well as health care concerns, costs, and access barriers. The page concludes with suggested Strategies to Support Health and Well-being of People with Disabilities.

Ally, S., Boyd, K., Abells, D., Amaria, K., Hamdani, Y., Loh, A., Niel, U., Sacks, S., Shea, S., Sullivan, W. F., & Hennen, B. (2018). Improving transition to adulthood for adolescents with intellectual and developmental disabilities: Proactive developmental and systems perspective. Canadian family physician Medecin de famille canadien, 64 (Suppl 2), S37–S43.

An important article demonstrating how clinicians can support the transition from adolescence into adulthood. Validates the importance of being proactive and developing relevant transition plans that ensure continuity of care.

Autism Statistics and Facts. Autism Speaks.

CDC prevalence numbers broken down by gender and race across several indices, including employment statistics and healthcare costs.

Centers for Disease Control and Prevention. (2023, April 4). Data and statistics on autism spectrum disorder. Centers for Disease Control and Prevention. https://www.cdc.gov/autism/data-research/

Breakdown of data on the prevalence of autism over the last 20 years.

Medical Comorbidities in Autism – A Primer for Health Care Professionals and Policy Makers. Thinking Autism Publications. (2021, January). PDF.

Overview of the research to educate and improve understanding of common co-occurring medical conditions in autism.

Al-Beltagi M. (2021). Autism medical comorbidities. World journal of clinical pediatrics, 10(3), 15–28.

Comprehensive overview of many co-occurring conditions of autism, broken down by category (genetic, neurological, sleep, GI, metabolic, immune/autoimmune, and allergic disorders). Also includes a useful compilation of best practices for an “Autism Friendly Emergency Department.”

Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020, December 1). The relationship between autism and Ehlers-Danlos Syndromes/hypermobility spectrum disorders. Journal of personalized medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7711487/

Review of the current state of knowledge of the link between autism and Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorders (HSD).

Schwichtenberg, A. J., Janis, A., Lindsay, A., Desai, H., Sahu, A., Kellerman, A., Chong, P. L. H., Abel, E. A., &; Yatcilla, J. K. (2022, November). Sleep in children with autism spectrum disorder: A narrative review and systematic update. Current sleep medicine reports.

Sleep problems are common for autistic people, and this review outlines known patterns in the field of sleep and ASD in four principal areas: (1) documents the prevalence and types of sleep problems; (2) treatment options and efficacy; (3) association of sleep issues with other behavioral, contextual, or biological elements; and (4) the impact of sleep disturbance on families and care providers.

Owens, A. P., Mathias, C. J., & Iodice, V. (2021, December 30). Autonomic dysfunction in autism spectrum disorder. Frontiers in integrative neuroscience. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8756818/

Studies the association between cardiovascular and thermoregulatory autonomic conditions in autism. Some of the conditions, such as (Postural Tachycardia Syndrome (PoTS), Ehlers-Danlos Syndrome (hE-DS), vasovagal syncope (VVS), and others, found that autonomic dysfunction is overrepresented in autism spectrum disorders.

The Autism Care Network works to improve mental health among autistic youth. Autism Speaks. (n.d.).

There is a positive correlation between autism and mental health conditions, such as anxiety disorders, sleep disorders, depression, OCD, bipolar disorder, and more.

Morgan, L., & Maddox, B. (2020). Autism Resource for Warning Signs of Suicide: Considerations for the Autism Community. Autism Warning Signs.

This toolkit examines the warning signs for the general public listed on the American Association of Suicidology (AAS) website and includes important considerations when working with autistic patients.

Salehi, A., Ashford, J. W., & Mufson, E. J. (2016). The link between Alzheimer’s disease and Down Syndrome. A historical perspective. Current Alzheimer research. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6368451/

Discusses the high incidence of Alzheimer’s dementia among those patients with Down syndrome. The study discusses the link and explores new research targeted at finding intervention therapies that could benefit individuals with both neurological conditions.

Warrier, V., Greenberg, D. M., Weir, E., Buckingham, C., Smith, P., Lai, M.-C., Allison, C., & Baron-Cohen, S. (2020, August 7). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nature News. https://www.nature.com/articles/s41467-020-17794-1#Sec2

The largest study to date demonstrating a positive correlation between neurodiversity and gender diversity. Those participants who do not identify with the sex they were assigned at birth are three to six times as likely to be autistic as cisgender people. Gender-diverse people are also more likely to report autism traits and to suspect they have undiagnosed autism.

Kallitsounaki, A., & Williams, D. M. (2022, October). Implicit and explicit gender-related cognition, gender dysphoria, autistic-like traits, and mentalizing: Differences between autistic and non-autistic cisgender and transgender adults. Archives of sexual behavior. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9556420/

This study further enhances our understanding of the link between ASD and gender diversity.

Kripke C. (2018). Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care. American Family Physician, 97(10), 649–656.

Provides an overview of the neurodiversity model of care and discusses best practices for providing better healthcare experiences for patients with various developmental disabilities.

Lotan, G., & Ells, C. (2010). Adults with intellectual and developmental disabilities and participation in decision making: ethical considerations for professional-client practice. Intellectual and developmental disabilities, 48(2), 112–125.

Authors challenge professionals to re-examine assumptions when supporting adults with intellectual and developmental disabilities. Concepts of autonomy, empowerment, and respect are examined in various professional settings. The authors offer a set of practical considerations that encourage self-determination and person-centered planning.

McNeil, K., Gemmill, M., Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. (2018). Circles of care for people with intellectual and developmental disabilities: Communication, collaboration, and coordination. Canadian family physician Medecin de famille canadien, 64(Suppl 2), S51–S56.

Good communication is essential when coordinating care for people with IDD and includes coordinating health information exchange, providing individualized adaptations to medical procedures, and attuning to a patient’s unique needs and communication methods.

Agaronnik, N., Campbell, E. G., Ressalam, J., & Iezzoni, L. I. (2019). Exploring issues relating to disability cultural competence among practicing physicians. Disability and Health Journal, 12(3), 403–410.

An expansive analysis of physicians’ cultural competency when it comes to disability, including how physicians define disability, their use of culturally-competent language in talking about disability, and attitudes surrounding disability. Recommendations for improving understanding of disability are also explored.

Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) Fact Sheet for Intellectual Disability
Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) Fact Sheet for Autism Spectrum Disorder

DSM-5-TR facts sheets for both Intellectual Disability and Autism Spectrum Disorder.

Education

Massachusetts DESE Individualized Education Program (IEP)

Current MA IEP form for 2023

Coleman, C. (2023, June 22). Publications.aap.org. https://publications.aap.org/journal-blogs/blog/24883/Adolescents-with-Autism-Individualized-Education

Examines the Individualized Education Programs (IEPs) of adolescents with autism spectrum disorder (ASD) to better understand transition plans and explore best practices for developing a good transition plan.

Joint Position Statement of AAIDD and The Arc. (2018). Education. AAIDD_CMS.

Joint Position Statement of AAIDD and The Arc to support children and youth with intellectual and/or developmental disabilities (IDD) to support the receipt of a free appropriate public education that includes fair evaluation, ambitious goals, challenging objectives, the right to progress, individualized supports and services, high-quality instruction, and access to the general education curriculum in age-appropriate inclusive settings.

Special Olympics Research Overview. (n.d.). Special Olympics.

50+ page overview covering “attitudes, sports, unified sports, health, unified strategy, young athletes, families, demographics, brand, and program evaluation.”

Genetic Testing

Prenatal Genetic Screening Tests. (2020, October). The American College of Obstetricians and Gynecologists.

Introduction and overview of several types of prenatal genetic screening tests.

Skotko, B. G. (n.d.). Delivering a Diagnosis of Down Syndrome.

Skotko, M.D., M.P.P., Children’s Hospital Boston & Boston Medical School offers best practices for delivering a Down syndrome diagnosis.

National Prenatal First Call Center:

The Prenatal First Call Center is a first of its kind, providing professional guidance for expectant parents and medical providers who are handling a prenatal diagnosis of Down Syndrome. It is part of the National Parents First Call Center.

Savatt, J. M., & Myers, S. M. (2021, January 18). Genetic testing in neurodevelopmental disorders. Frontiers.

Provides a review of the benefits of genetic testing in patients with neurodevelopmental disorders and describes the three major testing modalities and their yields.

language

Rahman, L. (n.d.). Disability Language Guide. Stanford Disability Initiative Board.

Guide to the use of respectful and inclusive language when communicating with or talking about people with disabilities.

Covid-19 - Related

Nocker, Y. L. de, & Toolan, C. K. (2021, July 16). Using telehealth to provide interventions for children with ASD: A systematic review – review journal of autism and developmental disorders. SpringerLink.

This literature review explores important emerging research into the rapidly expanding field of telehealth for supportive services and interventions for ASD.

Willner, P., Rose, J., Kroese, B. S., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities (JARID).

Important article raising awareness of the high level of unmet mental health needs among carers of children and adults with intellectual disability.

Intersection Between ESL and Disability

Cheatham, Gregory & Lim, Sumin. (2018). Immigrant, Bilingual Parents of Students With Disabilities: Positive Perceptions and Supportive Dialogue. Intervention in School and Clinic. 54. 40-46. 10.1177/1053451218762490.

Research indicates that partnerships with immigrant, bilingual parents of students with disabilities can be challenging and result in the marginalization of parents during Individualized Education Program (IEP) meetings. Discusses strategies for more supportive dialogue during IEP meetings to support inclusion for students with disabilities who are learning English.

DuBay, M., Watson, L. R., & Zhang, W. (2018, May). In search of culturally appropriate autism interventions: Perspectives of Latino caregivers. Journal of autism and developmental disorders.

Explores how cultural differences in Latino communities require culturally appropriate services and interventions for families of children with ASD.

Zuckerman, K. E., Chavez, A. E., Wilson, L., Unger, K., Reuland, C., Ramsey, K., King, M., Scholz, J., & Fombonne, E. (2021). Improving autism and developmental screening and referral in US primary care practices serving Latinos. Autism: the international journal of research and practice, 25(1), 288–299.

Evaluates “REAL-START,” a yearlong screening intervention aimed to improve PCP adherence to autism spectrum disorder and developmental screening guidelines and increase Early Intervention referral for at-risk children in primary care clinics serving Latinos.

Families

Health Care

Education

Genetic Testing

language

Covid-19 - Related

Intersection Between ESL and Disability

Useful Links

Contact

MA Contact

Maura Sullivan

CT Contact

Susanna Peyton