Serving Adults with Disabilities on the Autism Spectrum · Serving Adults on the Autism Spectrum Credit Information § If you would like to receive continuing education or continuing

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Serving Adults on the Autism Spectrum

Credit Information§ If you would like to receive continuing education or continuing medical education

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February 28, 2018

The 2018 Disability-Competent Care Webinar Series:

Serving Adults on the Autism Spectrum


Webinar Overview

§ The Lewin Group, under contract with the CMS Medicare-Medicaid Coordination Office, partnered with ChristopherDuff and other disability practice experts to develop the 2018Disability-Competent Care webinar series. This is thesecond webinar in the series.

§ Each session will be interactive (e.g., polls and interactivechat functions), with 45 minutes of presenter-led discussion,followed by 15 minutes of presenter and participantdiscussions.

§ Video replay and slide presentation are available after eachsession at:https://www.resourcesforintegratedcare.com

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https://resourcesforintegratedcare.com/DisabilityCompetentCare/2018_DCC_Webinar_Series/Autism_Spectrum


Continuing Education Accreditation

§ The Centers for Medicare & Medicaid Services is accredited by the International Association for Continuing Education and Training (IACET) for Continuing Education Units (CEU) and by the Accreditation Council for Continuing Medical Education (ACCME) for Continuing Medical Education (CME, AMA PRA Category 1 credit for physicians and non-physicians).

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Obtaining Continuing Education Credit

§ Complete the post-test through CMS’ Learning Management System and score a 80 percent or higher by midnight March 19, 2018.

§ https://www.resourcesforintegratedcare.com/sites/default/files/CE_Credit_Guide_Pre_Webinar.pdf

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Support Statement

§ This webinar is supported through the Medicare-Medicaid Coordination Office (MMCO) in the Centers for Medicare & Medicaid Services (CMS) to help beneficiaries dually eligible for Medicare and Medicaid have access to seamless, high-quality health care that includes the full range of covered services in both programs. To support providers in their efforts to deliver more integrated, coordinated care to dually eligible beneficiaries, MMCO is developing technical assistance and actionable tools based on successful innovations and care models, such as this webinar.

§ To learn more about current efforts and resources, visit Resources for Integrated Care at: https://www.resourcesforintegratedcare.com

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Introductions

Christopher Duff Disability Practice and Policy Consultant

Mahsa Hesari, M.A., BCBAAutism Program Manager, Behavioral Health DepartmentLA Care

Christina Nicolaidis, MD, MPH Professor, Portland State UniversityAdjunct Associate Professor Oregon Health and Science UniversityCo-Director, Academic Autism Spectrum Partnership in Research and Education (www.AASPIRE.org)

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Webinar Learning Objectives

This webinar will emphasize:

§ The autism spectrum and characteristics of autism

§ Health care disparities experienced by autistic adults

§ Barriers to obtaining health care faced by autistic adults, and tools to improve health care for these individuals

§ The care management needs of autistic adults, their families, and providers

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Agenda

§ Understanding autism

§ Health care challenges for adults on the autism spectrum

§ Participant experiences and strategies for providers

§ Tools for improving health care experiences

§ The LA Care Autism Spectrum Disorder (ASD) program

§ Audience questions

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Understanding Autism

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Christina Nicolaidis, MD, MPH Professor, Portland State UniversityAdjunct Associate Professor Oregon Health and Science UniversityCo-Director, Academic Autism Spectrum Partnership in Research and Education (www.AASPIRE.org)


Definition and Language

§ Autism and autism spectrum disorder (ASD) are both terms for a group of complex neurodevelopmental disabilities that affect social communication, sensory processing, and scope of interests.

§ The formal diagnosis is ASD, though many people prefer simply using the term “autism” or “autistic” so as not to emphasize the disorder.

§ Many autistic adults prefer identity-first language (e.g. autistic adult) vs. person-first language (e.g., adult with autism).1§ “On the autism spectrum” can be an acceptable alternative.

Sources: 1) Sinclair J. Why I dislike "person first" language. 1999.

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Diagnostic Criteria

§ The Diagnostic Statistic Manual (DSM)-5 unified DSM-4 diagnoses of autistic disorder, Asperger's disorder, childhood disintegrative disorder (CDD), and pervasive developmental disorder-not otherwise specified (PDD-NOS).2

§ Autism does not manifest on a linear spectrum. The skills and challenges of autistic individuals can:§ Fall across multiple spectra§ Change depending on environmental stimuli, supports, and

stressors§ Change over time as people mature, as they learn coping

skills, and as demands change

Sources: 2) Nicolaidis et al., Medical Clinics of North America; 2014.

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Diagnostic Criteria

DSM-5 Criteria for ASD3

A. Persistent deficits in social communication and social interaction across multiple contexts.

1. Deficits in social-emotional reciprocity2. Deficits in nonverbal communicative behaviors used for social

interaction3. Deficits in developing, maintaining, and understanding

relationships

B. Restricted, repetitive patterns of behavior, interests, or activities.

1. Stereotyped or repetitive motor movements, use of objects, or speech

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior

3. Highly restricted, fixated interests that are abnormal in intensity or focus

4. Hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment

Sources: 3) American Psychiatric Association: DSM-5 Diagnostic Criteria.

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Prevalence of Autism

§ A consensus on the prevalence of autism is difficult to obtain because rates of autism will vary based on how the data is gathered.§ According to the Centers for Disease Control and Prevention (CDC), almost

1.5 percent of children aged 8 years old are identified with ASD.4 The same prevalence of ASD is seen in dually eligible beneficiaries.5

§ Studies have shown that approximately 1 percent of adults meet the criteria for autism.6

§ The increase in prevalence of autism over time is likely due to changes in diagnostic criteria and how they are applied.7

§ Studies indicate there is a continued under-diagnosis of autism in women (of all ages)8 and people of color.9

Sources: 4) Centers for Disease Control and Prevention; 2014.5) CMS Data Snapshot No.12; April 20166) Brugha et al. Information Centre for Health and Social Care; 2009. 7) Hill et al. Springer International Publishing; 2015.8) Dean et al. Autism 21; 2017.9) Mandell et al. Am J Public Health; 2009.14


Associated Conditions

§ There is a growing literature on conditions associated with ASD. The following are documented as co-occurring with ASD:10-16

§ Epilepsy§ Gastroesophageal reflux disease (GERD), constipation, dysphagia§ Feeding and nutrition problems § Metabolic syndrome § Anxiety, depression, sleep disturbances, and suicidality§ Post-traumatic stress symptoms associated with childhood

treatments § Higher risk of experiencing violence and abuse victimization§ Reduced life expectancy

Sources: 10) Krahn et al., American Journal of Public Health; 2015.11) Lagu et al., The New England ournal of Medicine; 2014.12) Okumura et al., Journal of Adolescent Health; 2013. 13) Vohra et al., Journal of Autism and Development Disorders; 2016.14) Woolfenden et al. Dev Med Child Neurol; 2012.15) Hirvikoski et al. The British Journal of Psychiatry; 2016.16) Kupferstein, Advances in Autism; 2018.

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Considerations for Working with Adults with Autism

§ Do not rely on stereotypes (fixed, over generalized beliefs about a particular group of people).§ By stereotyping we infer that a person has characteristics and

abilities that we assume all members of that group have (e.g., all autistic people have savant characteristics).

§ Autistic traits can be both strengths and challenges. § Some autistic individuals develop great expertise in their areas

of special interest, or capitalize on their need for consistency to self-manage chronic conditions. However, not all autistic individuals possess stereotypical traits.

§ Autistic people do not always shy from social interactions, and many maintain strong friendships or relationships.

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Health Care Challenges for Adults on the Autism Spectrum

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Social Factors and Health Disparities

§ Disability status and health disparities are often associated with poorer performance on measures that are linked to value-based purchasing program payments.17

§ People with disabilities are more likely to:18,19

§ Experience worse outcomes§ Experience difficulties or delays in receiving necessary health

care§ Have limited knowledge and access to sexual health

information§ Experience a “services cliff” as they transition from

adolescence to adulthood

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Sources: 17) National Academies of Sciences, Engineering, and Medicine; 2017.18) ASPE Report to Congress; 2016.19) Disability and Health. Healthy People 2020.


Health Care Disparities

§ A 2013 survey comparing autistic adults to non-autistic adults with and without other disabilities reported that autistic adults experience:§ Greater unmet health care needs

§ Physical health needs § Mental health needs § Prescription medication needs

§ Greater emergency department use § Lower use of Pap smears § Lower satisfaction with participant-provider communication and

health care self-efficacy

Source: 20) Nicolaidis et al. Journal of General Internal Medicine; 2013.

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Barriers to Health Care

§ In a recent study, people without disabilities experienced fewer barriers to health care compared with autistic people and people with other disabilities.

§ Autistic people reported different barriers to health care than people with other disabilities, and their utilization reflected a different pattern of health care usage. Top barriers experienced included:§ Fear or anxiety (35%)§ Can’t process information fast enough in real-time (32%)§ Concern about cost (30%)§ Facilities cause sensory issues (30%)§ Difficulty communicating with providers (29%)

Sources: 21) Raymaker et al. Autism; 2017.

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Participant Experiences and Strategies for Providers

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Factors Contributing to Health Care Experiences

§ The success of health care interactions depends on the interplay between:§ System-level factors:

§ Availability of formal/informal supports§ Complexities of the health care system§ Accessibility and stigma

§ Participant-level factors:§ Verbal communication skills and atypical non-verbal communication§ Sensory sensitivities§ Challenges with body awareness§ Slow processing speed

§ Provider-level factors:§ Knowledge and incorrect assumptions about autism§ Willingness to provide accommodations§ Skill in incorporating care partners

§ Dually eligible participants may also experience additional barriers related to socioeconomic disparities (e.g., transportation, housing, nutrition).

22Source: 22) Nicolaidis et al. Autism; 2015.


Participant Experiences: Sensory Sensitivities

§ “The lights in the office are very bright and that is exacerbated by the white walls. Sometimes the waiting rooms are crowded and I cannot filter out the background of people talking or shuffling magazines. I feel disoriented by being led down long hallways to different rooms. I am not able to bring up my concerns because it is all I can manage to figure out what the doctor is saying so I can respond to his questions. But he refills my usual meds and I go on my way.”



Participant Experiences: Body Awareness

§ “Like when they ask if pain is shooting or stabbing or burning, it’s like, I don’t know, it just feels funny.”

§ “The problem is, it’s difficult for me to isolate specific sources of pain and identify duration and intensity. It’s sort of like the equivalent to white noise.”



Participant Experiences: Providers’ Assumptions

§ “I have used my Alphasmart [portable communication device] when my speech is too slow or difficult to understand for medical appointments. Some of the doctors have been really great, but others have acted really condescending when I used it, sometimes assuming I needed a parent present. So I try to go without, even when my speech is in poorer shape.”

§ “Usually, when I demonstrate a large vocabulary or some fundamentals, my needs, especially around communication, are then ignored. My choice is then to pretend to be less intelligent and accept their infantilism, or to be confused, frustrated, and stressed out.”



Participant Experiences: Communication and Accommodations

§ “I prefer and find it easier to communicate in text. But with every doctor I speak to, they wave away the note-card and look at me to ask the same question I have just answered and interpret my confusion as my being non-compliant with the medicine. I wish health care providers would read the notes I make for them.”

§ “But they talk to him in the same words that they’d use if they were talking to me. If they’re gonna talk to him, they need to say it how he can understand it.”



Participant Experiences: Decreased Participation Autonomy

§ “Just because I might need more information to understand things, it doesn’t mean they can or should just talk to me like a child or leave me without knowledge of my own health. My body is my body, and my experiences and wishes about my body are MINE TO MAKE!”



Participant Experience: Complexities of the Health Care System

§ “I wish they understood how easy it is to get confused with all the administrative hoops a patient has to jump through to get help. It sounds pathetic at my age, but I need someone to hold my hand. I don’t know what I am doing. But nobody understands that I need that, and there is definitely nobody willing to do it.”



Lack of Provider Training

§ Medical schools and continuing education creditors currently do not offer training requirements for the care of adults with developmental disabilities in internal medicine or family medicine.

§ In one large study, 77 percent of health care providers self-rated their knowledge and skills in providing care to autistic adults as poor or fair.23

§ Adults on the autism spectrum may vary greatly in their strengths and needs, which can make provider training challenging.

29Source: 23) : Zerbo et al. Journal of autism and developmental disorders; 2015.


Provider Strategies

§ Before a visit, ask staff to:§ Inform the participant about what is likely to happen during the

visit, and enable the participant to procure pictures of the office and/or staff

§ Schedule longer appointments and avoid rescheduling appointments

§ Notify the participant about how long the wait is likely to be when checking in

§ Encourage the participant to prepare notes in advance about what they want to discuss

§ Identify and document the participant’s sensory sensitivities (e.g., lighting and noise)

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Provider Strategies

§ During a visit: § Make a problem list with the participant, and collaboratively

decide what to address§ Show the equipment to the participant before using it. If

possible, do a “trial run” of difficult exams or procedures§ Show the participant what you want them to do while they are

still in your office§ Give time to process what has been said or to respond§ Accommodate sensory sensitivities (e.g., low-level lighting,

away from high-traffic areas, quieter)

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Tools for Improving Health Care Experiences

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AASPIRE Health Care Toolkit

§ The AASPIRE Health Care Toolkit was created as part of an on-going research project by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) § The toolkit was designed using a community-based participatory

research approach; researchers, autistic adults, and people who support individuals on the autism spectrum worked together as equal partners throughout every phase of the research process.

§ The project was funded by the National Institute of Mental Health.§ There are two sides of the toolkit for distinct user groups:

§ Patients and supporters, and; § Health care providers

§ Site resources are meant to improve the health care of autistic adults.

www.autismandhealth.org

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http://www.autismandhealth.org/


AASPIRE Health Care Toolkit:Provider and Staff Strategies

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§ This provider side of the website offers materials, resources, and practical information to help providers offer high-quality primary care.

§ The toolkit includes the following sections:§ Autism information, diagnosis, and

referrals§ Caring for participants on the autism

spectrum§ Legal and ethical considerations§ Resources and links


AASPIRE Health Care Toolkit:Participant Strategies

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§ This website offers information and detailed instructions for participants and care partners to improve their health care experiences. Information is available in lay language and is edited by a team of autistic adults.

§ The toolkit includes the following sections:§ Navigating the health care system§ Staying healthy§ Participant rights in health care§ Autism information§ Computer and internet access§ Links to reliable medical information


AASPIRE Health Care Toolkit:Forms and Worksheets

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§ Forms and worksheets for participants and care partners include:§ Making an appointment worksheet§ What to bring to a health care visit checklist§ Symptoms worksheet§ After the visit worksheet§ Autism health care accommodations tool


AASPIRE Health Care Toolkit:Autism Health Care Accommodations Tool (AHAT)

§ Participants fill out a survey addressing topics such as:§ How the participant communicates § Care partners (as applicable)§ Accessing health care § Strengths, interests, and strategies for addressing anxiety in

health care settings§ Using this information, a personalized accommodations

report is created for participants to give their health care providers. § The structure and format of the accommodations report were

shaped by health care provider input

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AHAT Sample Provider Report

Participant: Dora Raymaker

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Health Care Toolkit and AHAT

§ Of the 170 autistic adults who tested the AASPIRE Health Care Toolkit, 95 percent reported that they found the material important, useful, and easy to understand. One month after using the toolkit, participants reported:§ Fewer barriers to health care§ Greater health care self-efficacy§ Improved participant-provider communication

§ Potential utility of the AHAT:§ Participants (and their care partners) consider their accommodation

needs and are able to communicate them§ Participants can improve their self-advocacy in health care settings§ Helps health care providers to understand and be more receptive to

reasonable accommodations and participant requests§ Generated reports are easily shared with provider staff or case

managers

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Lessons Learned

§ Autism is common in adulthood; a large cohort of diagnosed children are now reaching adulthood.

§ There are opportunities for the health care system to improve capability to provide adequate care for adults on the autism spectrum.

§ Tools exist to help participants, care partners, providers, and staff.

§ More work is needed at a system-level to improve functionality for autistic adults.

§ Addressing health care needs of autistic adults can make a huge difference in their lives.

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Many Thanks to……

§ The AASPIRE Team (www.aaspire.org)§ AASPIRE Funders:

§ National Institute Of Mental Health§ R34MH092503, R34MH092503, R21MH112038

§ The Oregon Clinical and Translational Research Institute (OCTRI), grant number UL1 RR024140 from the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH), and NIH Roadmap for Medical Research

§ Portland State University

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LA Care Autism Spectrum Disorder Program

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Mahsa Hesari, M.A., BCBAAutism Program Manager, Behavioral Health DepartmentLA Care


Background: Medicaid Coverage for ASD Services

§ Up to age 21§ Autism spectrum disorder (ASD) services are considered

Medicaid covered benefits, managed by the health plan. § 21+

§ ASD is covered under Medicaid as a behavioral health issue.§ If the attending providers indicate that continued ASD-like

services are needed, the beneficiary is referred for adult intellectual disability and development disability (I/DD) services.

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LA Care Health Plan

§ LA Care is the nation’s largest publicly-operated Medicaid health plan and has been serving Los Angeles county since 1997.

§ Our mission is to provide access to quality health care for LA county's vulnerable and low-income communities and residents and to support the safety net required to achieve that purpose.

§ Our legacy has been built by developing new programs, fostering innovative partnerships, and exploring ways to provide better care for reduced costs.

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LA Care’s ASD Program

§ LA Care identified the need for an ASD-specific program to meet the needs of providers and Medicaid participants.

§ Most current ASD program staff are former ASD practitioners. A variety of perspectives allows our staff to better understand and meet the needs and challenges of participants.

§ Key elements of the ASD program are:§ Open communication§ Evolving and updating resources and processes§ Continuous trainings

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LA Care Staff within the ASD Program

§ LA Care staff within the ASD program include: § Board certified behavior analysts to review treatment plans,

determine eligibility, and ensure coordination of care§ Care coordinator that addresses emails and calls coming

from the community, hospitals, vendors, and other entities§ Regional center liaison to address any issues and concerns

related to regional centers’ services as well as physician provider groups (such as occupational and physical therapy, and speech-language pathologist services)

§ A specialized provider network team focused on onboarding new physician provider groups and supporting them with business and administrative matters

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Functional Behavioral Assessment

Upon the request for autism services and receipt of a diagnoses from a physician or licensed psychologist, the participant is referred to an applied behavioral analysis (ABA) specialist for a standard functional behavioral assessment which includes: § Interviewing the caregiver where the behavior occurs§ Observing the participant in “their” environment§ Working with the participant to find out strengths and

weaknesses in: § Communication and motor skills§ Play skills§ Adaptive and social skills

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Functional Behavioral Assessment(continued)

§ The assessment goals are to:§ Define the behavior by identifying the:

§ Frequency (e.g., per hour, day, week);§ Duration (how long it lasts); and§ Intensity (how damaging or destructive), e.g. mild, moderate,

severe.§ Determine the reasons why the participant is engaging in the

problem behaviors. § Design evidence-based treatment plans to address the

identified problem behaviors and/or developmental delays. § Recommend goals and ABA-based treatments to the health

plan.

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Evidence-Based Treatments for Autism

§ Applied behavioral analysis (ABA) is a scientific discipline concerned with the understanding and improvement of human behavior in homes, clinics, and schools. § The goal is to develop effective treatments that will support improving

behavior problems and learning.24

Behavioral health treatments (BHT) are the primary behavioral interventions that have been identified as evidenced-based:

§ Comprehensive treatments - Usually provided intensively at home or in center-based programs for an average of 36 months.

§ Focus-based treatments - Designed to address specific behavior including aggression, self-injury, and disruptive or other challenging behaviors. Commonly includes caregiver training and averages 10-25 hours per week for a short period of time.

Sources: 24) Baer et al. Journal of Applied Behavioral Analysis; 1968.

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ASD Provider Network

§ LA Care’s applied behavioral analysis (ABA) provider network consists of:§ 70+ in-network ABA providers § Additional memorandum of understanding (MOU)-based ABA

providers § Licensed psychologists for second opinions

§ All of the ABA providers have access to a local psychological service (Beacon) for testing and other mental health services such as talk therapy, medications, etc.

§ Care coordination is organized by LA Care’s in-house staff to ensure integration between providers and services, including:§ Occupational and physical therapy services§ Speech-language pathologist services

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Transitioning Participants to Adult Services

§ Prior to a participant turning 21, if a need is identified for continuing services, a care coordinator will refer the individual to the local disability services center.

§ If other services are required (e.g., talk therapy, marriage/family therapy, or psychiatric supports), the participant is referred to the plan’s behavioral health network to determine eligibility and identify providers.

§ Providers can engage local Disability Service Centers (DSCs) or health plans to determine eligibility for adults who previously received autistic services as children.

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Lessons Learned Transitioning Participants to Adult Services

§ Initiate early planning to minimize gaps in service.§ Identify ongoing participant needs after age 21. § Refer the participant to the appropriate service network (e.g.,

disability service centers (DSCs) or Behavioral Health network).

§ Facilitate the transfer of participant records. § During early planning prepare the participant and their

families for differing eligibility criteria and benefits (between DSCs and LA Care).§ LA Care and the DSC have dedicated personnel to facilitate

the transition.

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Lessons Learned in Developing the Program

§ Gain management and leadership support. Buy-in is crucial to program success.§ LA Care leadership identified dedicated staff to develop and

deliver the autism program.§ Design policies and procedures that clinically, ethically, and

medically put the “participant first.” § Ensure flexibility to accommodate participant needs

§ Be open to new information (e.g. clinical information, guidelines, policies and regulations).

§ Develop effective workflows, processes and staff training to optimize consistency.§ Hire staff with prior experience working with this population

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Audience Questions

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Next Webinar

Palliative and Hospice Care for Adults with DisabilitiesDate: March 7th, 2018

Time: 2:00pm-3:00pm ET

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Thank You for Attending!

§ The video replay, slide presentation, and a summary of the Q&A will be available at:

https://www.resourcesforintegratedcare.com

§ For more information about obtaining CEUs or CMEs via CMS’ Learning Management System, please visit: https://www.resourcesforintegratedcare.com/sites/default/files/CE_Credit_Guide_Pre_Webinar.pdf

§ Questions? Please email [email protected]

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mailto:[email protected]


Webinar Evaluation Form

§ Your feedback is very important! Please take a moment to complete a brief evaluation on the quality of the webinar. The survey will automatically appear on the screen approximately a minute after the conclusion of the presentation.

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Send Us Your Feedback

Help us diversify our series content and address current Disability-Competent Care training needs – your input is essential!

Please contact us with your suggestions [email protected]

What We’d Like from You:§ How best to target future Disability-Competent Care webinars to

health care providers and plans involved in all levels of the health care delivery process

§ Feedback on these topics as well as ideas for other topics to explore in webinars and additional resources related to Disability-Competent Care

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mailto:[email protected]


Sources

1. Sinclair J. Why I dislike “person first” language. 1999; http://web.archive.org/web/20080616063934/http://web.syr.edu/~jisincla/person_first.htm Accessed November 21, 2017.

2. Christina Nicolaidis, Clarissa Calliope Kripke, Dora Raymaker; Primary care for adults on the autism spectrum. Med Clin N Am 98 (2014) 1169–1191.

3. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders (DSM-5): https://www.psychiatry.org/psychiatrists/practice/dsm

4. Centers for Disease Control and Prevention. Press release: March 27, 2014. https://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

5. Centers for Medicare & Medicaid Services, Office of Minority Health. Health disparities in the Medicare population: Autism spectrum disorders. Data Snapshot; No. 12, April 2016. https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/OMH_Dwnld-DataSnapshot-Autism.pdf

6. Brugha T MS, Meltzer H, Smith J, Scott FJ, Purdon S, Harris J, Bankart J. Autism Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007. Information Centre for Health and Social Care; 2009.

7. Hill, A. P., Zuckerman, K., & Fombonne, E. (2015). Epidemiology of autism spectrum disorders. In Translational approaches to autism spectrum disorder (pp. 13-38). Springer International Publishing.

8. Dean, Michelle, Robin Harwood, and Connie Kasari. "The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder." Autism 21, no. 6 (2017): 678-689.

9. Mandell DS, Wiggins LD, Carpenter LA, et al. Racial/ethnic disparities in the identification of children with autism spectrum disorders. Am J Public Health. 2009;99:493–498.

10. Krahn, GL, Walker, DK, Correa-De-Araujo, R (2015) Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health 105 (2 Suppl.): S198-S206.

11. Lagu, T, Iezzoni, LI, Lindenauer, PK (2014) The axes of access – improving care for patients wit disabilities. The New England ournal of Medicine 370: 1947-1851.

12. Okumura, MJ, Hrsh, AO, Hilton, JF. (2013) Change in health status and access to care needs: results from the 2007 national health survey of adult transition and health. Journal of Adolescent Health 52: 413-418.

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http://web.archive.org/web/20080616063934/http://web.syr.edu/~jisincla/person_first.htm

https://www.psychiatry.org/psychiatrists/practice/dsm

https://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/OMH_Dwnld-DataSnapshot-Autism.pdf

https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/OMH_Dwnld-DataSnapshot-Autism.pdf


Sources, Continued

13. Vohra, R, Madhaven, S, Sambamoorthi, U (2016) Emergency department use among adults with Autism Spectrum Disorders (ASD). Journal of Autism and Development Disorders 46: 1441-1454.

14. Woolfenden S, Sarkozy V, Ridley G, et al. A systematic review of two outcomes in autism spectrum disorder—epilepsy and mortality. Dev Med Child Neurol 2012; 54(4):306–12.

15. Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. The British Journal of Psychiatry. 2016;208(3):232-238.

16. Kupferstein, Henny. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism 4:1;19-29.

17. National Academies of Sciences, Engineering, and Medicine. (2017). Accounting for social risk factors in Medicare Payment, Washington, DC: The National Academies Press. doi: 10.1722

18. Office of the Assistant Secretary for Planning and Evaluation. (2016). Report to Congress: Social Risk Factors and Performance under Medicare’s Value Based Purchasing Programs

19. Disability and Health. Healthy People 2020. Retrieved from https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health/ebrs

20. Raymaker, DM, McDonald, KE, Ashkenazy, E, Gerrity, M, Baggs, AM, Kripke, C, Hourston, S, Nicolaidis, C (2016) Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism 21:8 972-984

21. Nicolaidis, C, Raymaker, D, McDonald, K, Dern, S, Boisclair, WC, Ashkenazy, E, Baggs, A (2013) Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. Jun; 28(6):7610769.

22. Nicolaidis, C, Raymaker, DM, Ashkenazy, E, McDonald, KE, Dern, S, Baggs, AEV, Kapp, SK, Weiner, M, Boisclair, WC. “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Journal of Autism. Vol 19, Issue 7, 2015.

23. Zerbo O, Massolo ML, Qian Y, Croen LA. (2015) A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System. Journal of autism and developmental disorders. 45(12): 4002-4014.

24. Baer, DM, Wolf, MM, Risley, TR (1968) Some current dimensions of applied behavior analysis. Journal of Applied Behavioral Analysis: Spring; 1(1): 91-97.

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https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health/ebrs

https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health/ebrs


Resources

§ Advocacy Organizations§ http://www.autism-society.org/§ https://www.autismspeaks.org/family-services/adults

§ Gently Does It – Caring for adults with autism§ https://acpinternist.org/archives/2008/11/autism.htm

§ Healthcare toolkit for persons with autism§ https://autismandhealth.org/?a=pt&p=main&theme=ltlc&size=small

§ Caring for patients on the autism spectrum§ https://www.autismandhealth.org/?a=pv&p=main&t=pv_fac&s=fac_fac&theme=ltlc&size=small

§ Why I dislike First-person Language§ http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

§ Resource Guide for Adults who think they may be Autistic§ https://www.autismspeaks.org/sites/default/files/docs/is_it_autism-_tool_kit_complete.pdf

§ Article on a service delivery model for persons with Autism§ http://ps.psychiatryonline.org/doi/pdf/10.1176/appi.ps.201400443

§ Autism spectrum disorder in adults: diagnosis, management, and health services development§ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940003/

§ Primary Care for Adults on the Autism Spectrum§ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851469/

§ Academic Autism Spectrum Partnership in Research and Education (AASPIRE): www.aaspire.org§ Dora Raymaker, PhD, Katie McDonald, Phd, Elesia Ashkenazy, Mel Baggs, Jane Rake, Steven Kapp, PhD, Tobi Rates, JD,

Joelle Smith, Andee Joyce, Finn Gardniner, Michael Weiner, MD, MPH, Clarissa Kripke, MD, Jennifer Aengst, PhD, Lai Saephan, Mirah Scharer, Alannah Mitchell

§ National Institute Of Mental Health§ The Oregon Clinical and Translational Research Institute (OCTRI), grant number UL1 RR024140 from the National Center for

Research Resources (NCRR), a component of the National Institutes of Health (NIH), and NIH Roadmap for Medical Research§ Portland State University

61

http://www.autism-society.org/

https://www.autismspeaks.org/family-services/adults

https://acpinternist.org/archives/2008/11/autism.htm

https://autismandhealth.org/?a=pt&p=main&theme=ltlc&size=small

https://www.autismandhealth.org/?a=pv&p=main&t=pv_fac&s=fac_fac&theme=ltlc&size=small

http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

https://www.autismspeaks.org/sites/default/files/docs/is_it_autism-_tool_kit_complete.pdf

http://ps.psychiatryonline.org/doi/pdf/10.1176/appi.ps.201400443

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940003/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851469/

http://www.aaspire.org/


Resources, Continued

§ Gernsbacher MA. Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry. 2017;58(7):859-861.

§ Kapp SK, Gillespie-Lynch K, Sherman LE, Hutman T. Deficit, Difference, or Both? Autism and Neurodiversity. Developmental Psychology. 2013;49(1):59-71.

§ Kenny L, Hattersley C, Molins B, Buckley C, Povey C, Pellicano E. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 2016;20(4):442-462.

§ Sinclair J. Why I dislike "person first" language. 1999; http://web.archive.org/web/20080616063934/http://web.syr.edu/~jisincla/person_first.htm Accessed November 21, 2017.

§ Van Wijngaarden-Cremers JMP, Van Eeten E, Groen WB, (2014) Gender and age differences in core triad of impairments in autism spectrum disorders: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders 44(3): 627–635.

§ Liptak GS, Benzoni LB, Mruzek DW, et al. Disparities in diagnosis and access to health services for children with autism: data from the National Survey of Children’s Health. J Dev BehavPediatr. 2008;29:152–160.

§ Mandell DS, Listerud J, Levy SE, et al. Race differences in the age at diagnosis among medicaid-eligible children with autism. J Am Acad Child Adolesc Psychiatry. 2002;41:1447–1453.

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