The Autism-Aware Provider:
Special Considerations in Caring for Patients on the Autism Spectrum
Start
Table of Contents
Click to navigate through course
Unit 2: Challenges and Barriers
Unit 1: What is ASD?
Intro
Unit 3: Autism-Aware Practice
Resources
Quiz
Introduction
Course Objectives
- Understand characteristics, prevalence, and history of Autism Spectrum Disorder, as well as latest research about etiology
- Explain common challenges and barriers to healthcare for Autistic patients and understand how these disparities produce negative healthcare outcomes
- Learn how to best accommodate Autistic patients in practice to improve the healthcare experience for this population
Unit 1:
What is Autism Spectrum Disorder?
Start
Unit 1
What is Autism Spectrum Disorder?
DSM-V: Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder diagnosed in individuals exhibiting the following characteristics:
- Persistent deficits in social communication and interaction across multiple different contexts
- Social-emotional reciprocity: little or no initiation of social interaction, sharing emotions, or back-and-forth conversation
- Nonverbal communication: absent/reduced/atypical use of eye contact, facial expressions, gestures, or speech intonation in communication
- Developing, maintaining, and understanding relationships: absent/reduced/atypical social interest or difficulty adjusting behavior appropriately in different social contexts
- Restricted, repetitive patterns of behavior, interests, or activities (at least 2 of below)
- Stereotyped or repetitive motor movements, use of objects, or speech
- Insistence on sameness, inflexible routines, or ritualized patterns of verbal or nonverbal behavior
- Highly restricted, fixated interests with abnormal intensity or focus
- Hyper- or hypo-reactivity to sensory input in the environment
Unit 1
What is Autism Spectrum Disorder?
ASD diagnosis includes recognition of intellectual and language abilities, which vary greatly among Autistic individuals. Abilities range from severe intellectual disability to above-average intelligence, and from completely non-verbal to fluent speech. More severe impairments are correlated with more severe ASD symptoms.
ASD symptoms typically become apparent in the early developmental period (age 12-24mo), although may not fully manifest in some individuals until later life. Symptoms must cause the individual clinically significant impairment in social, occupational, or other important areas of functioning.
Autism is a SPECTRUM: manifestations of the disorder vary greatly among individuals depending on the severity of symptoms, personal characteristics, comorbidities, developmental level, and age.
Severity of ASD is specified into 3 different levels based on the individual's current impairment due to symptoms and required amount of support. Level can change based on context and may fluctuate over time.
Unit 1
What is Autism Spectrum Disorder?
Autism By the Numbers
ASD is more common in males, and recent meta-analysis estimates the male-to-female ratio at 3:1
MALE: FEMALE
Direct and indirect costs of caring for Autistic people in the U.S. (2015)--More than stroke and hypertension combined
YEARLY
The CDC estimates that 1 in 59 children in the U.S. aged 8 years has ASD
UNITED STATES
The WHO estimates that approximately 16% of the global child population has ASD
GLOBALLY
3:1
$268.3 Billion
1 in 59
16%
Unit 1
What is Autism Spectrum Disorder?
History of Autism
Leo Kanner and Hans Asperger Publications
2013
1960s-70s
Autism First Recognized in DSM-III
1980
New Developments in Autism Research & Diagnosis
1940s
DSM-V Published
Continuing to Refine Autism in DSM-III-R and DSM-IV
1987-1994
Read more
Read more
Read more
Read more
Read more
Unit 1
What is Autism Spectrum Disorder?
ASD is a neurodevelopmental disorder caused by a complex interplay of both biological and environmental factors that continue to be investigated; at this time no single cause has been identified. Possible contributing etiologies include:
What causes Autism?
- Genetic: more than 100 gene mutations strongly linked to Autism
- Neuropathologic: structural abnormalities of brain regions (frontal and parietal lobes, cerebellum, hippocampus, limbic system), abnormal neurotransmission pathways and CNS maturation
- In utero exposures: drugs thalidomide and valproic acid
- Premature birth: higher risk of ASD and other neurodevelopmental disorders vs. full term infants
- Maternal immune dysregulation: active infection during pregnancy or history of autoimmune disease
True or False?: Vaccines cause Autism
Unit 1
What is Autism Spectrum Disorder?
Common Comorbidities
Autistic patients often have more than one medical or psychological condition in addition to ASD. Click below to learn more.
Psychological
Medical
Unit 1
What is Autism Spectrum Disorder?
Personal Experiences: Living with ASD
Responses from an online interview survey
"My disabilities are 'invisible' but that DOESN'T mean that: They don't exist. They aren't just as debilitating as visible disabilities. They are any less worthy of your best understanding and noblest support. You get to manipulate or disregard me." -Autistic Patient
"I am very proud to be autistic, and it makes me who I am. I see more good in being autistic than not...society needs to catch up!" -Autistic Patient
"Autism is...a color wheel, not a linear spectrum. There are many different areas of support needs that make up the wheel...it is not based on if someone is 'severely autistic' or 'less autistic'." -Autistic Patient
"Caring for a child with autism can be exhausting." -Caregiver/Parent
Unit 1
What is Autism Spectrum Disorder?
Personal Experiences: Living with ASD
Responses from an online interview survey
"People who are autistic are not emotionless or lack empathy. In my experience my autism causes me to feel emotions and empathy so intensely it can impact my behaviors, overall mood, thoughts, and needs...in others it may be hard to even detect what emotion is being felt or how to outwardly show/process said emotion." -Autistic Patient
"Social differences are some of the hardest parts of being autistic...I fully understand how social interactions are supposed to look like or sound like...but it has never come naturally to me." -Autistic Patient
"Sometimes, we can fight really, really hard to live up to the same demands of life that neurotypicals are expected to, and sometimes we're so exhausted by the fight that we have to 'check out' in order to come back." - Autistic Patient
"ASD is not just for white little boys." -Autistic Patient
Unit 2:
Healthcare Challenges and Barriers for Autistic Patients
Start
Unit 2
Challenges and Barriers
There is clear evidence that patients with ASD are among those with some of the highest healthcare costs and overall healthcare utilization. Yet, this population of patients is significantly more likely to report unmet needs, less access to care, difficulty with healthcare providers, and delayed care.
WHY?
Explore the content of this unit in order to understand some of the major factors contributing to this significant healthcare disparity.
Unit 2
Challenges and Barriers
Communication Challenges
Deficit in social communication and interaction is one major characteristic of ASD. Therefore, verbal and non-verbal communication during healthcare interactions can be very challenging for Autistic patients and pose a significant barrier for this population. Some specific difficulties include:
Communicating Non-verbally
Describing Concerns
Understanding Information
Unit 2
Challenges and Barriers
Sensory Sensitivities
Another common characteristic of ASD is hypersensitivity to sensory input. Therefore, many aspects of the typical healthcare environment can be very overwhelming and distressing for Autistic patients. This factor further adds difficulty to healthcare interactions. Some common sensitivities include:
Bright or harsh lighting in the exam room
Invasive procedures or exams
Noisy, crowded waiting area
Unpredictable wait times
Unexpected touch during the physical exam
Unit 2
Challenges and Barriers
Inadequate Provider Knowledge and Skills
A majority of healthcare providers report significant inexperience, discomfort, or lack of formal training in how to specifically care for Autistic patients. This disconnect between provider skills and patient needs poses another significant barrier to optimal healthcare. Some common issues include:
Lack of formal training
Lack of flexibility
Perceived stigma
Stereotyping
Unit 2
Challenges and Barriers
Navigating The Complex Healthcare System
The complexities of the modern healthcare system can be difficult for anyone to navigate, but for patients with ASD, this can be especially challenging. Lack of support in navigating the healthcare system poses yet another barrier for Autistic patients as well as their caregivers/supporters. Some commonly encountered difficulties include:
Scheduling appointments, administrative tasks
Accessing specialist care
Knowing when and where to seek care
Pediatric to adult transition
Unit 2
Challenges and Barriers
In summary, the Autistic patient population faces greater healthcare disparities due to an interplay of patient-, provider-, and system-level factors.
System
Provider
Patient
Unit 2
Challenges and Barriers
Personal Experiences: Challenges in Healthcare
Responses from an online interview survey
"I walk away having no means by which to remember a doctor's instructions or details of our discussion, and I am left feeling angry, frustrated, discouraged, and hopeless...If I recover from the blow sometimes I'll seek a new doctor, but I'll more likely avoid them altogether, all of which causes me to neglect my health, and affords me no quality of life." -Autistic Patient
"I had scripted the majority of what I was planning on bringing up with the medical professional and once I did so I was met with an attitude and told that maybe I was 'just on Google too much' and not taken seriously...I left with no further answers on what I could be experiencing or where to move on from there." -Autistic Patient
"I feel like the main challenge I face is how complicated the healthcare system is...I feel as though with the current system every time I go in there is a chance the insurance could reject any claim. So I haven't gone in for any visit besides preventive visits for fear of an unexpected bill." -Autistic Patient
"Lack of understanding/belief that I mean what I'm saying, as I don't do facial expressions. Many health care persons don't believe it as I'm not showing neurological signs of distress. This can make it extremely difficult to get the support I need." -Autistic Patient
Unit 2
Challenges and Barriers
Personal Experiences: Challenges in Healthcare
Responses from an online interview survey
"Many of my over-sensory issues related to autism have been ignored regarding things like getting blood tests as well as eating disorder treatment and therapy. This led to some especially traumatic experiences" -Autistic Patient
"General challenges for me have been not knowing when to call a doctor, avoiding phone calls because they make me anxious, energy spent processing, deciphering, and remembering information...needing but not getting more detailed information in order to make confident, informed decisions about by care." -Autistic Patient
"I've been disrespected, chastised, mocked, gaslit, invalidated, and dismissed by many doctors over my adult lifespan." -Autistic Patient
"I had to get several tests done while seeking a diagnosis for POTS...all of them required me to be touched or seen in areas that are triggering...I had asked for accommodations before the appointments happened. There were several times I had to remind the technicians of what those were and often was met with a surprised tone, not fulfilling accommodations, and a general lack of concern." -Autistic Patient
"ASD is a very wide spectrum making it difficult to find the best care...In network insurance is always a struggle because of the very limited number of providers available. We are lucky to find a good provider fit only find they are out of network with no other good options in network." -Caregiver/Parent
Unit 3:
How to be Autism-Aware: Best Practices and Accommodations
Start
Unit 3
Autism-Aware Practice
So, what does "autism-aware" practice look like?
It starts with individualization: knowing your Autistic patients well and working with them to identify their specific accommodation needs. Every individual with ASD is unique!
This unit content will explore evidence-based reasonable accommodations that can be implemented as well as best practices for specific situations involving Autistic patients.
Unit 3
Autism-Aware Practice
In general, use precise, clear, frank, and concrete language; avoid figures of speech
Encourage patient to use their preferred communication method and/or assistive communication technology
Minimize reliance on non-verbal cues such as eye contact or facial expressions
Communication
Avoid open-ended or complex questions; be specific or give a list of options
Minimize small talk or other non-essential conversation
Provide lists of symptoms or give examples of common experiences to help patients more accurately express how they feel
Write out important information and/or directions for the patient to give them at the end of the visit
Allow for longer time to process and respond to questions; avoid rapid-fire or stacked questions
Unit 3
Autism-Aware Practice
Environment
The typical healthcare environment is very often overwhelming and distressing for those with ASD. Simple changes can be made to any healthcare setting in order to better accommodate Autistic patients and help improve their overall experience. Click below to learn more.
Reduce Sensory Over-stimulation
Reduce Unpredictability
Unit 3
Autism-Aware Practice
Applying Autism-Aware Practices: Some Specific Examples
Procedures: Phlebotomy
Procedures: MRI
Physical Exam
Unit 3
Autism-Aware Practice
Applying Autism Aware Practices in Acute-care Situations
Acute Behavior Change/Distress
Hospitalization/Inpatient Care
Just as other patient populations, Autistic patients experience illness requiring inpatient level of medical care. Unfortunately, hospitalization can be a significantly stressful experience for patients with ASD due to the unfamiliar environment and sensory challenges, in addition to distress from their physical illness. Several reasonable adjustments can be made in order to better accommodate Autistic patients in the hospital setting.
At times when an Autistic person feels overwhelmed by sensory, physical, mental, or social demands, they express their distress with a "meltdown" or "shutdown" response. This can manifest with agitation, aggression, withdrawal, or any other acute behavior change from baseline. In this acute situation it is important for the healthcare provider to recognize the meltdown behaviors and work to identify and reverse the cause as soon as possible.
Read more
Read more
Unit 3
Autism-Aware Practice
In summary, implementing Autism-Aware accommodations in healthcare practice is relatively simple but can make a huge difference to Autistic patients.
While this unit outlined some general accommodations that can be helpful to most patients with ASD, it is important to remember that each individual has unique needs. A great rule of thumb if unsure of how to best accommodate your Autistic patient is: just ask!
Link
For more information and resources about Autism-Aware practice, explore the Resources section:
Unit 3
Autism-Aware Practice
Personal Experiences: Autism-Aware Healthcare
Responses from an online interview survey
"Every concern was answered and accommodations were not met with any judgement. They gave me time alone in the procedure room to get comfortable with my environment...They asked for consistent consent during the whole thing...even would ask when I was externally showing signs of distress if I was needing to take a break...after it was done they told me I did a great job and that it was no trouble to take the extra steps to help me feel comfortable." -Autistic Patient
"One accommodation my therapist provides is allowing me to give short notice to cancel an appointment and not charging me for it, taking into account the fact that I don't drive, and knowing that I do my best to be responsible but that sometimes my disabilities cause me to fail in my functioning or my follow through." -Autistic Patient
"One clinic let me sit outdoors as the waiting area had a lot of stimulus and the receptionist came out to tell me when it was my turn."-Autistic Patient
Unit 3
Autism-Aware Practice
Expert Advice and Suggestions to Improve
Responses from an online interview survey
"I enjoy being able to advocate and teach along side those who I am working with. I enjoy how much my patients teach me in return." -Expert Healthcare Provider
"The system can improve autistic experiences with healthcare by:-Cooperating by letting us do what we need to do to get the most out our appointments -Improving insurance coverage for adjunctive therapies -Providing well-improved education on autism for doctors working in all fields--since autism effects so many body systems" -Autistic Patient
"Take additional time working with patients, slow speech patterns down. Multiple stops asking for reiteration to ensure understanding. Take the time to explain each step of any process to individuals...Be aware of pain differences, a multitude of genetic conditions, and how they play into the person's overall health. Be aware of medications and every side effect that could play into behavior and functioning. Awareness and avoidance of polypharmacy." -Expert Healthcare Provider
"I think having an outline of what to expect during a visit could be useful." -Autistic Patient
Quiz
Start
Question 1/6
Which of the following is NOT a criteria for Autism Spectrum Disorder according to DSM-V?
Persistent deficits in social communication and interaction
Restricted, repetitive patterns of behavior, interests, or activities
Intellectual or learning disability
Correct!
CONTINUE
Question 2/6
Which neurological condition is commonly comorbid with ASD?
Spina Bifida
Multiple Sclerosis
Epilepsy
Correct!
CONTINUE
Question 3/6
TRUE or FALSE: According to a self-reported study, approximately 79% of adult medicine providers rated their ability to care for Autistic patients as good or excellent.
FALSE
TRUE
Correct!
CONTINUE
Question 4/6
Which of the following is a system-level factor contributing to adverse healthcare outcomes for Autistic patients?
Shortage of specialist care in rural communities
Minimal amount of administrative roadblocks
Literal thinking and slower cognitive processing speed
Correct!
CONTINUE
Question 5/6
What can a healthcare provider change in the environment in order to accommodate their Autistic patients with sensory sensitivities?
Ensure overhead lights are at maximum brightness
Prohibit use of comfort items such as sensory toys or headphones during visit
Provide a separate, quiet waiting area or allow patient to wait outside until appointment
Correct!
CONTINUE
Question 6/6
Which of the following strategies can facilitate effective communication with Autistic patients?
Use precise, clear, frank, and concrete language; avoid figures of speech
Ensure that the patient maintains eye contact during the entire interaction
Ask only open-ended and complex questions
Correct!
CONTINUE
Incorrect!
Try again
Congratulations!
You have successfully completed the module.
RESOURCES
Home
Resources
Resources
AASPIRE Toolkit for Healthcare Providers
Downloadable Resources for Patients
Autism Speaks Toolkits
ECHO Autism
Info
Info
Info
Info
References
1. Al Dera H. Cellular and molecular mechanisms underlying autism spectrum disorders and associated comorbidities: A pathophysiological review. Biomedicine & Pharmacotherapy. 2022;148:112688. doi:https://doi.org/10.1016/j.biopha.2022.1126882. American Psychiatric Association. Autism Spectrum Disorder. In: Diagnostic and Statistical Manual of Mental Disorders. 5th ed. American Psychiatric Association; 2013.3. Bellando J, Fussell JJ, Lopez M. Autism Speaks Toolkits. Clinical Pediatrics. 2015;55(2):171-175. doi:https://doi.org/10.1177/00099228155945874. Calleja S, Islam FMA, Kingsley J, McDonald R. Healthcare access for autistic adults. Medicine. 2020;99(29):e20899. doi:https://doi.org/10.1097/md.00000000000208995. Cashin A, Buckley T, Trollor JN, Lennox N. A scoping review of what is known of the physical health of adults with autism spectrum disorder. Journal of Intellectual Disabilities. 2016;22(1):96-108. doi:https://doi.org/10.1177/17446295166652426. Doherty M, Neilson S, O’Sullivan J, et al. Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open. 2022;12(2):e056904. doi:https://doi.org/10.1136/bmjopen-2021-0569047. Haydon C, Doherty M, Davidson IA. Autism: making reasonable adjustments in healthcare. British Journal of Hospital Medicine. 2021;82(12):1-11. doi:https://doi.org/10.12968/hmed.2021.03148. Hodges H, Fealko C, Soares N. Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation. Translational Pediatrics. 2020;9(Suppl 1):S55-S65. doi:https://doi.org/10.21037/tp.2019.09.099. Malik-Soni N, Shaker A, Luck H, et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatric Research. 2021;91(5). doi:https://doi.org/10.1038/s41390-021-01465-y10. Mason D, Ingham B, Urbanowicz A, et al. A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults. Journal of Autism and Developmental Disorders. 2019;49(8):3387-3400. doi:https://doi.org/10.1007/s10803-019-04049-2 11. Muskens JB, Velders FP, Staal WG. Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: a systematic review. European Child & Adolescent Psychiatry. 2017;26(9):1093-1103. doi:https://doi.org/10.1007/s00787-017-1020-0
References
12. Nicolaidis C, Kripke CC, Raymaker D. Primary Care for Adults on the Autism Spectrum. Medical Clinics of North America. 2014;98(5):1169-1191. doi:https://doi.org/10.1016/j.mcna.2014.06.01113. Nicolaidis C, Raymaker DM, Ashkenazy E, et al. “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism. 2015;19(7):824-831. doi:https://doi.org/10.1177/136236131557622114. Rosen NE, Lord C, Volkmar FR. The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond. Journal of Autism and Developmental Disorders. 2021;51(12). doi:https://doi.org/10.1007/s10803-021-04904-115. Rosen TE, Mazefsky CA, Vasa RA, Lerner MD. Co-occurring psychiatric conditions in autism spectrum disorder. International Review of Psychiatry. 2018;30(1):40-61. doi:https://doi.org/10.1080/09540261.2018.145022916. Salari N, Rasoulpoor S, Rasoulpoor S, et al. The global prevalence of autism spectrum disorder: a comprehensive systematic review and meta-analysis. Italian Journal of Pediatrics. 2022;48(1). doi:https://doi.org/10.1186/s13052-022-01310-w17. Salvatore GL, Simmons CA, Tremoulet PD. Physician Perspectives on Severe Behavior and Restraint Use in a Hospital Setting for Patients with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. Published online October 16, 2021. doi:https://doi.org/10.1007/s10803-021-05327-818. Sohl K, Mazurek MO, Brown R. ECHO Autism: Using Technology and Mentorship to Bridge Gaps, Increase Access to Care, and Bring Best Practice Autism Care to Primary Care. Clinical Pediatrics. 2017;56(6):509-511. doi:https://doi.org/10.1177/000992281769182519. Stogiannos N, Carlier S, Harvey-Lloyd JM, et al. A systematic review of person-centred adjustments to facilitate magnetic resonance imaging for autistic patients without the use of sedation or anaesthesia. Autism. 2021;26(4):782-797. doi:https://doi.org/10.1177/1362361321106554220. Tregnago MK, Cheak-Zamora NC. Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders. 2012;6(3):1023-1031. doi:https://doi.org/10.1016/j.rasd.2012.01.005 21. Zerbo O, Massolo ML, Qian Y, Croen LA. A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System. Journal of Autism and Developmental Disorders. 2015;45(12):4002-4014. doi:https://doi.org/10.1007/s10803-015-2579-2
Created by Emily Geraets, Physician Assistant Student, 2023 Graduate of Des Moines University
The Autism-Aware Provider
Emily Geraets
Created on January 14, 2023
This online module for healthcare providers explores special considerations in caring for patients on the Autism Spectrum.
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Transcript
The Autism-Aware Provider:
Special Considerations in Caring for Patients on the Autism Spectrum
Start
Table of Contents
Click to navigate through course
Unit 2: Challenges and Barriers
Unit 1: What is ASD?
Intro
Unit 3: Autism-Aware Practice
Resources
Quiz
Introduction
Course Objectives
Unit 1:
What is Autism Spectrum Disorder?
Start
Unit 1
What is Autism Spectrum Disorder?
DSM-V: Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder diagnosed in individuals exhibiting the following characteristics:
Unit 1
What is Autism Spectrum Disorder?
ASD diagnosis includes recognition of intellectual and language abilities, which vary greatly among Autistic individuals. Abilities range from severe intellectual disability to above-average intelligence, and from completely non-verbal to fluent speech. More severe impairments are correlated with more severe ASD symptoms.
ASD symptoms typically become apparent in the early developmental period (age 12-24mo), although may not fully manifest in some individuals until later life. Symptoms must cause the individual clinically significant impairment in social, occupational, or other important areas of functioning.
Autism is a SPECTRUM: manifestations of the disorder vary greatly among individuals depending on the severity of symptoms, personal characteristics, comorbidities, developmental level, and age.
Severity of ASD is specified into 3 different levels based on the individual's current impairment due to symptoms and required amount of support. Level can change based on context and may fluctuate over time.
Unit 1
What is Autism Spectrum Disorder?
Autism By the Numbers
ASD is more common in males, and recent meta-analysis estimates the male-to-female ratio at 3:1
MALE: FEMALE
Direct and indirect costs of caring for Autistic people in the U.S. (2015)--More than stroke and hypertension combined
YEARLY
The CDC estimates that 1 in 59 children in the U.S. aged 8 years has ASD
UNITED STATES
The WHO estimates that approximately 16% of the global child population has ASD
GLOBALLY
3:1
$268.3 Billion
1 in 59
16%
Unit 1
What is Autism Spectrum Disorder?
History of Autism
Leo Kanner and Hans Asperger Publications
2013
1960s-70s
Autism First Recognized in DSM-III
1980
New Developments in Autism Research & Diagnosis
1940s
DSM-V Published
Continuing to Refine Autism in DSM-III-R and DSM-IV
1987-1994
Read more
Read more
Read more
Read more
Read more
Unit 1
What is Autism Spectrum Disorder?
ASD is a neurodevelopmental disorder caused by a complex interplay of both biological and environmental factors that continue to be investigated; at this time no single cause has been identified. Possible contributing etiologies include:
What causes Autism?
True or False?: Vaccines cause Autism
Unit 1
What is Autism Spectrum Disorder?
Common Comorbidities
Autistic patients often have more than one medical or psychological condition in addition to ASD. Click below to learn more.
Psychological
Medical
Unit 1
What is Autism Spectrum Disorder?
Personal Experiences: Living with ASD
Responses from an online interview survey
"My disabilities are 'invisible' but that DOESN'T mean that: They don't exist. They aren't just as debilitating as visible disabilities. They are any less worthy of your best understanding and noblest support. You get to manipulate or disregard me." -Autistic Patient
"I am very proud to be autistic, and it makes me who I am. I see more good in being autistic than not...society needs to catch up!" -Autistic Patient
"Autism is...a color wheel, not a linear spectrum. There are many different areas of support needs that make up the wheel...it is not based on if someone is 'severely autistic' or 'less autistic'." -Autistic Patient
"Caring for a child with autism can be exhausting." -Caregiver/Parent
Unit 1
What is Autism Spectrum Disorder?
Personal Experiences: Living with ASD
Responses from an online interview survey
"People who are autistic are not emotionless or lack empathy. In my experience my autism causes me to feel emotions and empathy so intensely it can impact my behaviors, overall mood, thoughts, and needs...in others it may be hard to even detect what emotion is being felt or how to outwardly show/process said emotion." -Autistic Patient
"Social differences are some of the hardest parts of being autistic...I fully understand how social interactions are supposed to look like or sound like...but it has never come naturally to me." -Autistic Patient
"Sometimes, we can fight really, really hard to live up to the same demands of life that neurotypicals are expected to, and sometimes we're so exhausted by the fight that we have to 'check out' in order to come back." - Autistic Patient
"ASD is not just for white little boys." -Autistic Patient
Unit 2:
Healthcare Challenges and Barriers for Autistic Patients
Start
Unit 2
Challenges and Barriers
There is clear evidence that patients with ASD are among those with some of the highest healthcare costs and overall healthcare utilization. Yet, this population of patients is significantly more likely to report unmet needs, less access to care, difficulty with healthcare providers, and delayed care.
WHY?
Explore the content of this unit in order to understand some of the major factors contributing to this significant healthcare disparity.
Unit 2
Challenges and Barriers
Communication Challenges
Deficit in social communication and interaction is one major characteristic of ASD. Therefore, verbal and non-verbal communication during healthcare interactions can be very challenging for Autistic patients and pose a significant barrier for this population. Some specific difficulties include:
Communicating Non-verbally
Describing Concerns
Understanding Information
Unit 2
Challenges and Barriers
Sensory Sensitivities
Another common characteristic of ASD is hypersensitivity to sensory input. Therefore, many aspects of the typical healthcare environment can be very overwhelming and distressing for Autistic patients. This factor further adds difficulty to healthcare interactions. Some common sensitivities include:
Bright or harsh lighting in the exam room
Invasive procedures or exams
Noisy, crowded waiting area
Unpredictable wait times
Unexpected touch during the physical exam
Unit 2
Challenges and Barriers
Inadequate Provider Knowledge and Skills
A majority of healthcare providers report significant inexperience, discomfort, or lack of formal training in how to specifically care for Autistic patients. This disconnect between provider skills and patient needs poses another significant barrier to optimal healthcare. Some common issues include:
Lack of formal training
Lack of flexibility
Perceived stigma
Stereotyping
Unit 2
Challenges and Barriers
Navigating The Complex Healthcare System
The complexities of the modern healthcare system can be difficult for anyone to navigate, but for patients with ASD, this can be especially challenging. Lack of support in navigating the healthcare system poses yet another barrier for Autistic patients as well as their caregivers/supporters. Some commonly encountered difficulties include:
Scheduling appointments, administrative tasks
Accessing specialist care
Knowing when and where to seek care
Pediatric to adult transition
Unit 2
Challenges and Barriers
In summary, the Autistic patient population faces greater healthcare disparities due to an interplay of patient-, provider-, and system-level factors.
System
Provider
Patient
Unit 2
Challenges and Barriers
Personal Experiences: Challenges in Healthcare
Responses from an online interview survey
"I walk away having no means by which to remember a doctor's instructions or details of our discussion, and I am left feeling angry, frustrated, discouraged, and hopeless...If I recover from the blow sometimes I'll seek a new doctor, but I'll more likely avoid them altogether, all of which causes me to neglect my health, and affords me no quality of life." -Autistic Patient
"I had scripted the majority of what I was planning on bringing up with the medical professional and once I did so I was met with an attitude and told that maybe I was 'just on Google too much' and not taken seriously...I left with no further answers on what I could be experiencing or where to move on from there." -Autistic Patient
"I feel like the main challenge I face is how complicated the healthcare system is...I feel as though with the current system every time I go in there is a chance the insurance could reject any claim. So I haven't gone in for any visit besides preventive visits for fear of an unexpected bill." -Autistic Patient
"Lack of understanding/belief that I mean what I'm saying, as I don't do facial expressions. Many health care persons don't believe it as I'm not showing neurological signs of distress. This can make it extremely difficult to get the support I need." -Autistic Patient
Unit 2
Challenges and Barriers
Personal Experiences: Challenges in Healthcare
Responses from an online interview survey
"Many of my over-sensory issues related to autism have been ignored regarding things like getting blood tests as well as eating disorder treatment and therapy. This led to some especially traumatic experiences" -Autistic Patient
"General challenges for me have been not knowing when to call a doctor, avoiding phone calls because they make me anxious, energy spent processing, deciphering, and remembering information...needing but not getting more detailed information in order to make confident, informed decisions about by care." -Autistic Patient
"I've been disrespected, chastised, mocked, gaslit, invalidated, and dismissed by many doctors over my adult lifespan." -Autistic Patient
"I had to get several tests done while seeking a diagnosis for POTS...all of them required me to be touched or seen in areas that are triggering...I had asked for accommodations before the appointments happened. There were several times I had to remind the technicians of what those were and often was met with a surprised tone, not fulfilling accommodations, and a general lack of concern." -Autistic Patient
"ASD is a very wide spectrum making it difficult to find the best care...In network insurance is always a struggle because of the very limited number of providers available. We are lucky to find a good provider fit only find they are out of network with no other good options in network." -Caregiver/Parent
Unit 3:
How to be Autism-Aware: Best Practices and Accommodations
Start
Unit 3
Autism-Aware Practice
So, what does "autism-aware" practice look like?
It starts with individualization: knowing your Autistic patients well and working with them to identify their specific accommodation needs. Every individual with ASD is unique!
This unit content will explore evidence-based reasonable accommodations that can be implemented as well as best practices for specific situations involving Autistic patients.
Unit 3
Autism-Aware Practice
In general, use precise, clear, frank, and concrete language; avoid figures of speech
Encourage patient to use their preferred communication method and/or assistive communication technology
Minimize reliance on non-verbal cues such as eye contact or facial expressions
Communication
Avoid open-ended or complex questions; be specific or give a list of options
Minimize small talk or other non-essential conversation
Provide lists of symptoms or give examples of common experiences to help patients more accurately express how they feel
Write out important information and/or directions for the patient to give them at the end of the visit
Allow for longer time to process and respond to questions; avoid rapid-fire or stacked questions
Unit 3
Autism-Aware Practice
Environment
The typical healthcare environment is very often overwhelming and distressing for those with ASD. Simple changes can be made to any healthcare setting in order to better accommodate Autistic patients and help improve their overall experience. Click below to learn more.
Reduce Sensory Over-stimulation
Reduce Unpredictability
Unit 3
Autism-Aware Practice
Applying Autism-Aware Practices: Some Specific Examples
Procedures: Phlebotomy
Procedures: MRI
Physical Exam
Unit 3
Autism-Aware Practice
Applying Autism Aware Practices in Acute-care Situations
Acute Behavior Change/Distress
Hospitalization/Inpatient Care
Just as other patient populations, Autistic patients experience illness requiring inpatient level of medical care. Unfortunately, hospitalization can be a significantly stressful experience for patients with ASD due to the unfamiliar environment and sensory challenges, in addition to distress from their physical illness. Several reasonable adjustments can be made in order to better accommodate Autistic patients in the hospital setting.
At times when an Autistic person feels overwhelmed by sensory, physical, mental, or social demands, they express their distress with a "meltdown" or "shutdown" response. This can manifest with agitation, aggression, withdrawal, or any other acute behavior change from baseline. In this acute situation it is important for the healthcare provider to recognize the meltdown behaviors and work to identify and reverse the cause as soon as possible.
Read more
Read more
Unit 3
Autism-Aware Practice
In summary, implementing Autism-Aware accommodations in healthcare practice is relatively simple but can make a huge difference to Autistic patients.
While this unit outlined some general accommodations that can be helpful to most patients with ASD, it is important to remember that each individual has unique needs. A great rule of thumb if unsure of how to best accommodate your Autistic patient is: just ask!
Link
For more information and resources about Autism-Aware practice, explore the Resources section:
Unit 3
Autism-Aware Practice
Personal Experiences: Autism-Aware Healthcare
Responses from an online interview survey
"Every concern was answered and accommodations were not met with any judgement. They gave me time alone in the procedure room to get comfortable with my environment...They asked for consistent consent during the whole thing...even would ask when I was externally showing signs of distress if I was needing to take a break...after it was done they told me I did a great job and that it was no trouble to take the extra steps to help me feel comfortable." -Autistic Patient
"One accommodation my therapist provides is allowing me to give short notice to cancel an appointment and not charging me for it, taking into account the fact that I don't drive, and knowing that I do my best to be responsible but that sometimes my disabilities cause me to fail in my functioning or my follow through." -Autistic Patient
"One clinic let me sit outdoors as the waiting area had a lot of stimulus and the receptionist came out to tell me when it was my turn."-Autistic Patient
Unit 3
Autism-Aware Practice
Expert Advice and Suggestions to Improve
Responses from an online interview survey
"I enjoy being able to advocate and teach along side those who I am working with. I enjoy how much my patients teach me in return." -Expert Healthcare Provider
"The system can improve autistic experiences with healthcare by:-Cooperating by letting us do what we need to do to get the most out our appointments -Improving insurance coverage for adjunctive therapies -Providing well-improved education on autism for doctors working in all fields--since autism effects so many body systems" -Autistic Patient
"Take additional time working with patients, slow speech patterns down. Multiple stops asking for reiteration to ensure understanding. Take the time to explain each step of any process to individuals...Be aware of pain differences, a multitude of genetic conditions, and how they play into the person's overall health. Be aware of medications and every side effect that could play into behavior and functioning. Awareness and avoidance of polypharmacy." -Expert Healthcare Provider
"I think having an outline of what to expect during a visit could be useful." -Autistic Patient
Quiz
Start
Question 1/6
Which of the following is NOT a criteria for Autism Spectrum Disorder according to DSM-V?
Persistent deficits in social communication and interaction
Restricted, repetitive patterns of behavior, interests, or activities
Intellectual or learning disability
Correct!
CONTINUE
Question 2/6
Which neurological condition is commonly comorbid with ASD?
Spina Bifida
Multiple Sclerosis
Epilepsy
Correct!
CONTINUE
Question 3/6
TRUE or FALSE: According to a self-reported study, approximately 79% of adult medicine providers rated their ability to care for Autistic patients as good or excellent.
FALSE
TRUE
Correct!
CONTINUE
Question 4/6
Which of the following is a system-level factor contributing to adverse healthcare outcomes for Autistic patients?
Shortage of specialist care in rural communities
Minimal amount of administrative roadblocks
Literal thinking and slower cognitive processing speed
Correct!
CONTINUE
Question 5/6
What can a healthcare provider change in the environment in order to accommodate their Autistic patients with sensory sensitivities?
Ensure overhead lights are at maximum brightness
Prohibit use of comfort items such as sensory toys or headphones during visit
Provide a separate, quiet waiting area or allow patient to wait outside until appointment
Correct!
CONTINUE
Question 6/6
Which of the following strategies can facilitate effective communication with Autistic patients?
Use precise, clear, frank, and concrete language; avoid figures of speech
Ensure that the patient maintains eye contact during the entire interaction
Ask only open-ended and complex questions
Correct!
CONTINUE
Incorrect!
Try again
Congratulations!
You have successfully completed the module.
RESOURCES
Home
Resources
Resources
AASPIRE Toolkit for Healthcare Providers
Downloadable Resources for Patients
Autism Speaks Toolkits
ECHO Autism
Info
Info
Info
Info
References
1. Al Dera H. Cellular and molecular mechanisms underlying autism spectrum disorders and associated comorbidities: A pathophysiological review. Biomedicine & Pharmacotherapy. 2022;148:112688. doi:https://doi.org/10.1016/j.biopha.2022.1126882. American Psychiatric Association. Autism Spectrum Disorder. In: Diagnostic and Statistical Manual of Mental Disorders. 5th ed. American Psychiatric Association; 2013.3. Bellando J, Fussell JJ, Lopez M. Autism Speaks Toolkits. Clinical Pediatrics. 2015;55(2):171-175. doi:https://doi.org/10.1177/00099228155945874. Calleja S, Islam FMA, Kingsley J, McDonald R. Healthcare access for autistic adults. Medicine. 2020;99(29):e20899. doi:https://doi.org/10.1097/md.00000000000208995. Cashin A, Buckley T, Trollor JN, Lennox N. A scoping review of what is known of the physical health of adults with autism spectrum disorder. Journal of Intellectual Disabilities. 2016;22(1):96-108. doi:https://doi.org/10.1177/17446295166652426. Doherty M, Neilson S, O’Sullivan J, et al. Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open. 2022;12(2):e056904. doi:https://doi.org/10.1136/bmjopen-2021-0569047. Haydon C, Doherty M, Davidson IA. Autism: making reasonable adjustments in healthcare. British Journal of Hospital Medicine. 2021;82(12):1-11. doi:https://doi.org/10.12968/hmed.2021.03148. Hodges H, Fealko C, Soares N. Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation. Translational Pediatrics. 2020;9(Suppl 1):S55-S65. doi:https://doi.org/10.21037/tp.2019.09.099. Malik-Soni N, Shaker A, Luck H, et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatric Research. 2021;91(5). doi:https://doi.org/10.1038/s41390-021-01465-y10. Mason D, Ingham B, Urbanowicz A, et al. A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults. Journal of Autism and Developmental Disorders. 2019;49(8):3387-3400. doi:https://doi.org/10.1007/s10803-019-04049-2 11. Muskens JB, Velders FP, Staal WG. Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: a systematic review. European Child & Adolescent Psychiatry. 2017;26(9):1093-1103. doi:https://doi.org/10.1007/s00787-017-1020-0
References
12. Nicolaidis C, Kripke CC, Raymaker D. Primary Care for Adults on the Autism Spectrum. Medical Clinics of North America. 2014;98(5):1169-1191. doi:https://doi.org/10.1016/j.mcna.2014.06.01113. Nicolaidis C, Raymaker DM, Ashkenazy E, et al. “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism. 2015;19(7):824-831. doi:https://doi.org/10.1177/136236131557622114. Rosen NE, Lord C, Volkmar FR. The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond. Journal of Autism and Developmental Disorders. 2021;51(12). doi:https://doi.org/10.1007/s10803-021-04904-115. Rosen TE, Mazefsky CA, Vasa RA, Lerner MD. Co-occurring psychiatric conditions in autism spectrum disorder. International Review of Psychiatry. 2018;30(1):40-61. doi:https://doi.org/10.1080/09540261.2018.145022916. Salari N, Rasoulpoor S, Rasoulpoor S, et al. The global prevalence of autism spectrum disorder: a comprehensive systematic review and meta-analysis. Italian Journal of Pediatrics. 2022;48(1). doi:https://doi.org/10.1186/s13052-022-01310-w17. Salvatore GL, Simmons CA, Tremoulet PD. Physician Perspectives on Severe Behavior and Restraint Use in a Hospital Setting for Patients with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. Published online October 16, 2021. doi:https://doi.org/10.1007/s10803-021-05327-818. Sohl K, Mazurek MO, Brown R. ECHO Autism: Using Technology and Mentorship to Bridge Gaps, Increase Access to Care, and Bring Best Practice Autism Care to Primary Care. Clinical Pediatrics. 2017;56(6):509-511. doi:https://doi.org/10.1177/000992281769182519. Stogiannos N, Carlier S, Harvey-Lloyd JM, et al. A systematic review of person-centred adjustments to facilitate magnetic resonance imaging for autistic patients without the use of sedation or anaesthesia. Autism. 2021;26(4):782-797. doi:https://doi.org/10.1177/1362361321106554220. Tregnago MK, Cheak-Zamora NC. Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders. 2012;6(3):1023-1031. doi:https://doi.org/10.1016/j.rasd.2012.01.005 21. Zerbo O, Massolo ML, Qian Y, Croen LA. A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System. Journal of Autism and Developmental Disorders. 2015;45(12):4002-4014. doi:https://doi.org/10.1007/s10803-015-2579-2
Created by Emily Geraets, Physician Assistant Student, 2023 Graduate of Des Moines University