Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD)

Abstract

We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices.

Full text

ORIGINAL PAPER
Physician Perspectives on Providing Primary Medical Care
to Adults with Autism Spectrum Disorders (ASD)
Marji Erickson Warfield •Morgan K. Crossman •
Jennifer Delahaye •Emma Der Weerd •
Karen A. Kuhlthau
Springer Science+Business Media New York 2015
Abstract We conducted in-depth case studies of 10
health care professionals who actively provide primary
medical care to adults with autism spectrum disorders. The
study sought to understand their experiences in providing
this care, the training they had received, the training they
lack and their suggestions for encouraging more physicians
to provide this care. Qualitative data were gathered by
phone using a structured interview guide and analyzed
using the framework approach. Challenges to providing
care were identified at the systems, practice and provider,
and education and training levels. Solutions and interven-
tions targeting needed changes at each level were also
proposed. The findings have implications for health care
reform, medical school and residency training programs,
and the development of best practices.
Keywords Adults with autism spectrum disorders 
Health care Physician perspectives Physician training
Introduction
A new set of patients is seeking entrance to the adult health
care system in growing numbers. Among the overall in-
crease in the size of the population of children and youth
with disabilities, the fastest growing subgroup between
1997 and 2008 was individuals with autism spectrum dis-
orders (ASD) (Boyle et al. 2011). The timing of this trend
coupled with the rising rate of diagnosis of ASD and the
escalating use of health and related services associated with
ASD has put pressure on providers of health care to adults
to find ways to accommodate and care for individuals with
ASD (Piven and Rabins 2011). The current medical
workforce is not prepared to care for this influx of adults
with ASD (McDougle 2013).
Gaining access to the health care system has long been
problematic for youth, young adults, and adults with dis-
abilities. Barriers to care include the lack of insurance or
adequate coverage, accessible medical facilities, and
trained providers (Iezzoni 2011; National Council on Dis-
ability 2009). Access to health care for individuals with
disabilities particularly drops off in the transition from
pediatric to adult care (Cooley 2013; Lotstein et al. 2008,
2010; Shattuck et al. 2011). One reason is the limited
availability of physicians willing to accept youth with
disabilities who are transitioned (American Academy of
Pediatrics et al. 2011). Studies examining the shortage of
providers caring for adults with disabilities point to
inadequate education about various conditions and their
associated disease processes as well as inadequate training
in how to provide clinical care and counseling to these
patients (Bruder et al. 2012; Patel and O’Hare 2010; Peter
et al. 2009; Wilkinson et al. 2012). The lack of training is
associated with an expressed discomfort in caring for pa-
tients with disabilities and chronic conditions and a need
for greater exposure to and experience with these indi-
viduals (Okumura et al. 2008; Patel and O’Hare 2010;
Wilkinson et al. 2012).
With more individuals with disabilities reaching adult-
hood and the persistent problem of connecting adolescents
M. E. Warfield (&)M. K. Crossman
Starr Center on Intellectual and Developmental Disabilities,
Heller School for Social Policy and Management, Brandeis
University, MS035, 415 South Street, Waltham, MA 02453,
USA
e-mail: mew@brandeis.edu
J. Delahaye E. Der Weerd K. A. Kuhlthau
Department of Pediatrics, Massachusetts General Hospital,
Harvard Medical School, Boston, MA, USA
123
J Autism Dev Disord
DOI 10.1007/s10803-015-2386-9

with disabilities to accessible and high quality health care
(McManus et al. 2013), it is critical to study those health
care professionals who do provide care to adults with
disabilities. The purpose of this study is to better under-
stand how these providers became interested in serving
individuals with disabilities, their training, the challenges
they face, and their ideas for growing the number of
physicians who offer this care.
This study focused specifically on providers who care
for adults with ASD. The focus on ASD acknowledges the
general lack of research on adults with ASD (Bruder et al.
2012; Mandell 2013; Piven and Rabins 2011). This is
problematic given that individuals with ASD will receive
the majority of their health care as adults (Ganz 2007). It is
also useful to understand the perspectives of providers who
care for adults with ASD because this is a patient group
whose characteristics make providing health care difficult.
Youth and young adults with ASD are likely to need spe-
cialized care for common co-morbidities such as anxiety
and depression, epilepsy, gastrointestinal problems, anxiety
and depression, and respiratory, food, and skin allergies
(American Academy of Pediatrics et al. 2011; Canitano
et al. 2005; Gurney et al. 2006; Molloy and Manning-
Courtney 2003). Also compounding the health care chal-
lenges for many youth and adults with ASD are their
unusual sensory responses to some environmental stimuli
as well as their often increased anxiety associated with
entering new and highly stimulating environments (Aylott
2010; Ghaziuddin et al. 2002). Similarly, hypersensitivity
to touch among individuals with ASD presents challenges
to health care providers during examinations and diag-
nostic testing (Shea and Mesibov 2005; Williams 2003).
Methods
Design
The study was designed as an in-depth case study of 10
health care professionals (9 physicians and one nurse) who
are active providers of primary medical care to adults with
ASD. In case study research, Yin (2009) stresses the im-
portance of using a structured interview guide to increase
the study’s validity and reliability by approaching data
collection for each case in the same way. Thus, an interview
guide was created that asked specified questions regarding
(1) site characteristics; (2) provider experience and back-
ground with ASD; (3) practice environment and provision
of care details; (4) care coordination; and (5) interactions
with other medical providers including recommendations
for increasing the number of adult providers willing to care
for adults with ASD. The full interview guide is available
from the authors.
Sampling and Recruitment of Participants
Participants were identified using purposive sampling
techniques. First, recruitment efforts began by contacting
sites within the Autism Treatment Network (ATN). The
ATN is a network of ASD treatment centers in the United
States and Canada designed ‘‘to create and develop the
most effective approach to medical care for children and
adolescents affected by autism’’ (Autism Speaks, 2013). As
part of a previous project, the study team had recently been
in contact with the leading pediatricians and site coordi-
nators at 13 of these centers. Phone calls and emails to
these providers and ATN personnel described the current
study and asked them to identify physicians who actively
provide care to adults with ASD. A total of 14 physicians
were identified. All of these physicians were then contacted
by email and phone to inform them of the study and ask for
their participation. A total of 8 (57 %) physicians par-
ticipated in the in-depth interviews through this recruitment
process.
Second, additional participants were identified through the
New England Index, a searchable, online registry of physicians
throughout New England (http://www.disabilityinfo.org/).
All physicians on the New England Index who met two
criteria were selected: (1) identified themselves as a family
practitioner or internist; and (2) indicated that they cared for
patients with ASD and/or Asperger’s Syndrome. This search
yielded 9 providers, one of whom had already been inter-
viewed for this study. None of the providers were from the
same medical practice. Of the remaining 8 physicians, 3
(37.5 %) agreed to participate. One of the three interviews
was not used in the data analysis, however, as the physician
reported working most often with infants and children. Thus,
the final sample included a total of 10 providers. Table 1
presents descriptive information on the final sample.
Data Collection
Data were collected through phone interviews using the
interview guide described above. Each participant was sent
the guide prior to the call. Each interview was ap-
proximately 45 minutes long and was audio-recorded upon
obtaining verbal consent from each respondent. Each par-
ticipant was paid an honorarium for his or her participation.
The work was approved by the Institutional Review Boards
(IRB) at the Massachusetts General Hospital and Brandeis
University.
Data Analysis
Data from the 10 providers were analyzed using the
framework approach (Ritchie and Spencer 1994; Smith and
Firth 2011). This technique has been used to analyze
J Autism Dev Disord
123

qualitative data derived from research of health care
practices and policies (Smith and Firth 2011).
The framework approach has many similarities to thematic
analysis (Boyatzis 1989) but emphasizes transparency in data
analysis through three inter-connected stages that require the
research team to explicitly describe the processes that guide
the systematic analysis from initial data management to the
development of descriptive accounts and then explanatory
accounts (Smith and Firth 2011; Ritchie and Lewis 2003). In
the first stage, data management, one member of the research
team read the transcripts several times. Detailed notes were
taken of each respondent’s answers to the questions to manage
the volume of information gathered. During this stage as well
as subsequent stages, a set of themes were identified using the
respondents own words (‘‘in vivo’’ codes) as a means of
staying true to the data (Ritchie and Lewis 2003).
The initial themes derived during the data management
stage are listed in Table 2.
In the second stage, descriptive accounts, a second re-
searcher reviewed the transcripts several times prior to
reviewing the themes listed in Table 2and then refined the
initial categories. The second researcher found instances of
overlap between themes and instances where themes could
be merged to better represent the data. For example, themes
underlining the difficulties encountered when providing
care were embedded within the responses to multiple sec-
tions as were themes about training and education needs.
Overall, three primary themes emerged: (1) challenges in
providing care; (2) training and education needs; and (3)
solutions to address care challenges. Next, to ensure rigor,
both researchers independently coded the data into the
three primary themes, discussed discrepancies, and reached
consensus on two final categories; (1) challenges to pro-
viding care and (2) solutions and interventions.
In the third stage, explanatory accounts, the task is to ex-
amine the data further to identify associations or patterns
Table 1 Characteristics of respondents by specialty, job and site characteristics and patients with ASD
#
a
Specialty Job description Site description Patients with ASD
1 Family
physician
Oversees care for all adults with IDD in
state; no longer practicing
State 100 %
2 Med-Peds Outpatient clinic; runs Med-peds
residency program; attending on
inpatient units
Urban community health center Not 100 %, handful of kids with ASD
younger than transition age
3 Med-Peds Works in a hospital linked to a
community health center
Adult practice within an Urban
community health center
6 patients over 16 with severe PDD;
handful of patients under 16 with ASD
4 Child
psychiatrist
Private practice Private practice and university
clinic; grant for transition
services for individuals 17–25
with DD
50 % DD; of those with DD, 40 % is
ASD
5 Adult cognitive
and behavioral
neurologist
Psycho-pharm evaluation and
management; Tuesday clinics for ASD
and Alzheimer’s; research focus; helps
coordinate services
Autism and Alzheimer’s clinic
on Tuesdays
(missing)
6 Registered nurse Health care facilitator Various clinics in one urban
community agency that can
see patients across the life
span
Over 50 % have ASD
7 Med-Peds Chief resident Resident clinic affiliated with a
University in an Urban setting
Staff desensitized to working with
patients with DD
8 Primary care Provides care in two clinics Down syndrome clinic and
primary care clinic
10 % of patients with Down syndrome
have a comorbidity with autism
9 Internist Works in community health center and
involved with mental health department,
teaches public health students
Community health center, adult
mental health
Largely Latino youth (65–85 %), and
young adult population transition aged
(no precise percentage of patients with
ASD)
10 Internist, adult
primary care
Provides care for 3 residential units Outpatient residential programs Many patients with intellectual and
developmental disabilities, low
functioning, nonverbal, residential
patients
Med-Peds medicine-pediatrics specialty
a
Interview number
J Autism Dev Disord
123

within or across categories. The two researchers again ana-
lyzed the data within each of the final two categories and
determined that each could be coded into three subcategories:
systems level; practice/provision level, and training and
education level. Each researcher then independently coded
the data from the final two categories into the three sub-
categories, discussed discrepancies, and reached consensus.
Results
Challenges to providing care at the systems level, practice
or provision level, and for training and education are pre-
sented first. Next, the solutions and interventions suggested
at each level are described.
Challenges to Providing Care
Systems Level
Providers described several challenges including a shortage
of medical and non-medical services and supports for
youth and adults with ASD, a general lack of providers
willing to work with adults with ASD, and financial dis-
incentives for providers to include adults with ASD in their
practice due to the related issues of time, reimbursement,
and the need for additional staff.
The shortage of services and supports focused on both
contrasting the experiences of different age groups and on
the shortage of specific types of non-medical services. One
provider noted ‘‘Although there aren’t enough services for
and supports for children and adolescents with intellectual
and developmental disabilities, when they age out of those
services into adult services, almost everywhere there’s
significantly less.’’ Specific shortages for adults were de-
scribed in areas such as meaningful day activities and so-
cial skills training.
The lack of health care professionals available to pro-
vide care was described as universal; ‘‘The fundamental
issues of finding someone who has knowledge and skills
and unfortunately attitudes to appropriately look after
people, in my limited experience, is no different in Canada,
in Ontario, than it is in Tennessee.’’ The small community
of physicians experienced in caring for adults with ASD
Table 2 Themes derived from the data management stage by interview topic
Interview topic Themes from data management stage
Provider experience and background with ASD A high level of interest in caring for youth with ASD but rated their knowledge of
ASD and its treatment as low
Training in residency regarding ASD was limited
Lack of formal and consistent training programs post residency
Practice environment and provision of care Individuals with ASD have different treatment needs and can present extreme
challenges during visits
Respondent’s involvement in different initiatives and practice reforms that attempt
to address visit and treatment challenges
Care coordination and interactions with other medical
providers
Fewer health services available for adults than for children with ASD
Lack of non-medical/health services for adults with ASD compared to the demand
The individualized nature of the condition of autism makes standardizing care
difficult
There are reimbursement challenges and struggles related to the time needed for
visits and post visit work and the clinical, support, and administrative staff needed
to manage the work
There are challenges in getting services for youth with ASD if they do not also have
a diagnosis of intellectual disability
Lack of needed coordination and infrastructure on the adult medical side
Lack of knowledge about autism care, services in the community, and others who
can help with service provision
General complexity of the care needs of individuals with ASD
Recommendations for increasing the number of adult
providers willing to care for adults with ASD
Increase awareness of the needs and rewards of providing care to individuals with
ASD, of exposing physicians to this population, and setting the expectation that
doctors will see these patients in their practices.
Provide broad-based training early and often for physicians
Provide staff training to prepare for visits from individuals with ASD
Providing incentives and other supports
J Autism Dev Disord
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was described as a close group; ‘‘You know many of the
people personally, because you’ve seen them repeatedly at
conferences.’’
Related to the lack of professionals are the financial
disincentives to provide care to adults with ASD. These
disincentives are tied to the extra time it takes to care for an
adult with ASD, the need to connect with other providers
and utilize additional staff, and the lack of reimbursement
for that time and support which results in lost revenue. One
physician focused on the time issue; ‘‘The health sys-
tem…is set up for the general population and the timelines
are very limited. And that’s a huge barrier, because clients
with ASD or any developmental disability, they take much
longer to assess.’’ Another physician linked the additional
time directly to lost revenue; ‘‘Because they take more time
and the more time you spend with a patient the less money
you’re making. Especially someone who has severe autism
and who may be non-verbal and may have a guardian, you
can’t do a 10–15 minute visit. You need a half hour visit.
And that’s lost revenue’’ Time is also an issue outside of
the office visit; ‘‘Last night I was on the phone for an hour
with a therapist with a particularly difficult patient with an
ASD trying to talk about what all the issues are.’’ The need
to support other staff such as a case manager and social
worker to provide care was also mentioned. These chal-
lenges all come to a head because of the lack of reim-
bursement; ‘‘Gosh how do I even tell you how much time I
spend with this. It’s a problem, that’s why nobody wants to
see people. It’s not compensated.’’
Practice/Provision Level
Challenges identified at the practice/provision level also
included the issue of time constraints but were focused on
how to most efficiently organize patient care. Organiza-
tional difficulties included scheduling blocks of time for
the visit, monitoring the amount of time patients spend in
the waiting room, and designating time outside the visit for
completing necessary paperwork. One physician noted that
scheduling has to involve ‘‘timing in terms of when is the
best time to see that client and, or when are they more
difficult to assess?’’
Other challenges at the service provision level include
the complexity of family involvement, the physical envi-
ronment not being appropriately designed and barriers to
communicating with patients during the visit. One physi-
cian described the complexity of family member par-
ticipation by saying, ‘‘Well, they (patients with ASD) are
much more likely, almost 100 % likely to have someone
with them. Which is different. You know, most adults tend
to come to the doctors by themselves. Or at least if they
bring someone with them the other person really isn’t
participating in the visit. So right away you have two
patients. You have the patient and then you have the pa-
tient’s significant others. So that’s very different. And
that’s something that a lot of internists aren’t used to.’’
The physical environment was also mentioned as an-
other layer of complexity. One provider said, ‘‘I have a
couple of patients that can’t—when I was on the second
floor couldn’t come in. They won’t do elevators or stairs…
and I had to see them in their cars.’’ The need for adap-
tations to the physical space was also described. One pro-
vider said, ‘‘To be able to get that client there to that kind
of environment where, you know, sensory wise it’s very
overloading. Even for someone in the general population,
to go into a hospital it can be stressful. So for someone who
has a lot of anxiety related to ASD to go into that envi-
ronment and not have modifications, because the system
just doesn’t have the ability to have a quiet room where
they can be assessed. That’s a huge barrier.’’
The waiting room environment presents some chal-
lenges both in terms of how adults with ASD behave in the
waiting room in general and how they behave in relation to
other patients. One provider recalled a conversation with a
practice colleague who said, ‘‘I appreciate that you’re
trying to help these patients, but you know, your patient
socked my female patient in the face.’’ The provider con-
tinued by saying, ‘‘I had another one with autism who was
very low-functioning who urinated on the seat and one of
my partner’s patients came in, didn’t realize it, and sat in
it.’’
Finally, communication challenges arise in the conduct
of the visit, which can influence what the provider learns
about the patient’s condition and the subsequent care pro-
vided. One provider said, ‘‘You know, figuring out, espe-
cially if it’s your first time with someone, figuring out are
they verbal, do they make eye contact, do they want you to
make eye contact, are they using an I-pad or other com-
munication device? Do they use non-verbal communica-
tion? Establishing communication. Figuring out how they
express pain or discomfort is different.’’ Others suggested
that the lack of communication often requires some cre-
ative problem solving. One provider said, ‘‘A good ex-
ample is a young adult, a woman in her mid-twenties that
we have who is non-verbal, and for a couple of years of
having very significant head banging. And actually the
person who was taking care of her right before me after
2 years finally figured out hey, wait a minute. What are her
periods like? And they started pre-medding her with
Motrin right before her menstrual periods, and the head
banging went away.’’
Training and Education Level
Finally, at the training and education level, respondents
specified that the most critical issues are the lack of formal
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education or training provided to physicians during medi-
cal school and residency and their lack of knowledge
around working with individuals with ASD. These deficits
make providers feel less confident in working with this
population. One respondent said, ‘‘There was virtually no
education or supervised experience for me during my
residency (family medicine); and although that’s a little bit
better today, it still is far from being where it needs to be.’’
Many respondents claimed to have learned about this
population through personal experience or through self-
directed internships and conferences. One respondent
stated, ‘‘I didn’t find a lot in the way of formal programs. I
ended up working with people one-on-one actually; found
a mentor who was great to connect me to specific people
who are doing projects or who could teach me things. So it
was more of a one-to-one basis on my own initiative.’’
Another physician explained, ‘‘I never, ever, ever heard of
anything (related to training). If you’re interested in it, you
just say I’m interested in it. I have a reasonably good
training background in cognitive and behavioral neurology.
There’s certainly nothing official and as far as I know;
nothing unofficial either. It’s still trial by fire.’’ Overall, the
respondents identified a serious need for formal education
and training regarding caring for adults with ASD.
Solutions and Interventions
Findings within the category of solutions and interventions
were also dispersed between the systems level, practice/
provision level and training and education level.
Systems Level
Respondents provided ideas for addressing the capacity
problems and the financial disincentives that they had
identified as system level challenges. Providers mentioned
creating incentives to increase provider capacity; ‘‘It’s re-
ally getting into things to incentivize adult providers to do
this and to make their lives easier as well. If it’s seen as an
additional burden with no additional benefits then no one
would do it.’’ The need for specific resources was also
discussed. One provider said, ‘‘I think, you know courses
for guardianship, as a particular issue—internists don’t
know anything about medical guardianship. Or the practi-
cal things like what are SSI, and what does it mean to be
dual eligible if you have a severe medical condition.
Housing issues, kind of the practical matters. Not so much
the medical things.’’ Another provider honed in on struc-
tural issues; ‘‘I think the other things—sort of big picture—
are getting the assistance out there to providers so short of
having true sub-specialty clinics that specialize in taking
care of these patients. I think we’re in the process of getting
care coordinators and things like that.’’
Eliminating or reducing the financial disincentives re-
lated to reimbursement and insurance were also raised as
important. As mentioned by one physician, ‘‘I think that a
lot of the changes that I would think would be most helpful
would be on the policy level…reimbursing for the time
that it takes to care for people who are more complex,
maybe even reimbursing for the time it takes to talk with
their patient’s pediatrician.’’ Another physician stated,
‘‘It’s not a question of refusing to take care of this patient
population it’s a question of refusing or not accepting this
insurance. So it’s an insurance driven issue more than
anything else.’’
Practice/Provision Level
Respondents also suggested practice/provision level solu-
tions including creating a customized or localized list of
inclusive supports, services, resources, and communication
techniques. One physician noted, ‘‘Even having a couple of
ideas, or a couple lists of resources that you can give to
patients is very helpful.’’
A second office-based strategy was to review patient
lists on a daily basis to prioritize patients with ASD and
help lessen their wait time. One provider emphasized, ‘‘The
most important thing is to try to create a comfortable en-
vironment to move things along more efficiently; it makes
a big difference that folks don’t have to wait because they
don’t always understand why they’re waiting.’’ A related
suggestion was to enhance the physical office space. One
provider described how anticipating a visit can help; ‘‘You
know a lot of people with autism are very noise sensitive,
or light sensitive, or phobic of crowds. So what’s your
waiting room set up like? How big is it? How loud is it? If
you know someone is coming with autism can you arrange
for them to immediately be taken into a smaller room?’’
Finally, facilitating communication between physicians
was suggested. One provider said; ‘‘Having the family
doctor, after receiving the client, find out who the pe-
diatrician was and spend a bit of time connecting with that
pediatrician. Then, I think that would help.’’
Training and Education Level
At the training and education level, suggestions focused on
both providers and office staff. Suggestions for increasing
the awareness of the needs and rewards of caring for adults
with ASD included connecting physicians to existing pro-
grams and services. One respondent said; ‘‘I think exposure
to students, and not just medical students, is a great thing.
You know, Special Olympics is a wonderful model, a great
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123

way to do that. Best Buddies is a good way to do that. And
then, for people that are training and in clinical disciplines,
and I can really only talk about medicine, but a little bit of
experience with some other clinical disciplines, it will al-
ways impress me that just being exposed to a positive
experience had a number of people coming back. You
know, I guess the context for this was often a mandatory
day or half-day or something.’’
Training for physicians also needs to set the expectation
that, given the population trends, they will encounter these
patients. One provider described it this way; ‘‘You know, a
lot of times they say I’m not interested because I’m not
going to treat people on this spectrum and I say to them
well if you’re going into private practice, you are going to
treat people on the spectrum. So you may think you’re not,
but they’re going to show up in your office because
somebody referred them for a bipolar disorder or some-
thing else. So I really contend that if you’re in private
practice you’re going to treat people and you need to have
formal training.’’
Suggestions for training physicians also focused on the
need to provide education to individuals early in their ca-
reers, either in medical school or in residency. One re-
spondent supported this approach; ‘‘I think one way is to
work on the individuals who are training to be physicians,
particularly primary care doctors, to try to do—get some of
these patients into those practices so that they gain expo-
sure and interest. I think it’s a little harder to reintroduce
these patients to much older physicians who are sort of set
in their ways.’’
Finally, two other physicians suggested that in some
ways, patients with ASD are not as different from other
medically complex patients, indicating that training might
include taking lessons from caring for medically complex
patients and applying them to individuals with ASD.
In addition to training for physicians, training for office
staff was also emphasized as important and in-line with the
practice and provision level challenges and solutions re-
ported previously. One provider described how trained
staff can make a huge difference in the success of an office
visit by an individual with ASD. The provider said; ‘‘from
the minute the person makes their first contact with the
practice—or the guardian does—that could set up good
things or that could set up disaster. So step one is training
for staff on privacy issues and working with families.
Rather than assuming that the patient can tell you every-
thing they need to know. So staff training’s important. And
then once they get to the visit, training staff about different
communication techniques. You know how to respond to
fears, to behavioral difference. So that training is
important.’’
Discussion
The number of adults with ASD who need medical care
from physicians trained to care for adults is rapidly in-
creasing. Given the dearth of providers ready to assume the
care of this growing population, we sought to better un-
derstand the experiences and perspectives of health care
professionals who do care for adults with ASD. Our in-
depth interviews identified challenges in providing care at
the systems level, practice and provision level, and
education and training level. Respondents also described
solutions and interventions that they felt would address
these challenges.
Taken together, the findings indicate that changes
coming under health care reform could support provider’s
efforts to address the needs of adults with ASD. The
findings also have implications for medical school and
residency training programs and the development of best
practices.
Although many provisions within the Affordable Care
Act may have implications for supporting physicians who
provide care to adults with ASD, specific changes related to
the integration of physical and mental health care, the re-
design of primary care to operationalize the medical home
for adults, and the reformulation of reimbursements have
been identified as most pertinent (American Academy of
Pediatrics et al. 2011; Mandell 2013; Rosenthal 2008). In
the medical home, responsibility for care and care coor-
dination resides with the patient’s personal primary care
provider working with a health care team created to meet
the patient’s evolving needs. The health care team may
include specialists, nurses, social workers, care managers,
dietitians, pharmacists, physical and occupational thera-
pists, family members, and community service providers
(Barr 2006). Studies of medical home models have found
that their success depends on how well they focus on the
individual’s needs and their ability to access social services
and specialty medical services to solve problems as they
arise (Rosenthal 2008).
Implementing the medical home will also require
changes in reimbursement policy (Rosenthal 2008). It is
estimated that 40 % of the work done by a primary care
provider (e.g., arranging referrals, completing forms,
communicating with patients) is not reimbursed in a fee-
for-service model (Gottschalk and Flocke 2005). Thus,
within a medical home system, a revised and likely com-
plicated payment formula would need to take account of
the number of team members involved, the health infor-
mation technology used, email and telephone consultation
time, and the complexity of the patient’s needs among
other factors (Landon et al. 2007). The payment formula
J Autism Dev Disord
123

must also provide incentives for practices to invest in staff,
electronic records, and building connections with com-
munity agencies as well as incentives to care for more
complex patients (Campbell et al. 2008; McDonald et al.
2007; McDougle 2013). Studies suggest that more complex
patients have more to gain under a medical home model
(Snyder and Neubauer 2007). Despite the promise of these
changes, however, needed payment reforms have not ma-
terialized (American Academy of Pediatrics et al. 2011).
Beyond health reform, the study’s findings have impli-
cations for medical school and residency training pro-
grams. Several studies have found that providing specific
training to medical students as well as opportunities for
them to encounter patients with disabilities yields benefits
in terms of improving student’s attitudes and comfort level
regarding people with disabilities and increasing their
knowledge and skills in providing care to these patients
(Brown et al. 2010; Karl et al. 2013; Long-Bellil et al.
2011). Few medical schools or residency programs cur-
rently offer these kinds of training experiences although
this has begun to change (Graham et al. 2009; Moroz et al.
2010; Symons et al. 2009) and research is being conducted
to better assess the efficacy of these efforts (Symons et al.
2012; Lam et al. 2010). Rather than simply adding a single
lecture to an existing course, however, medical schools and
residency programs must integrate into their curricula re-
quired courses and clinical rotations focused on individuals
with ASD across the lifespan (McDougle 2013). Internet-
based sharing and coordination of the materials created to
educate medical students and residents could speed the
expansion of these training efforts. Continuing education
for practicing physicians has also been identified as an
important need (Bruder et al. 2012).
Another set of findings from the study focused on both the
challenges of providing health care to adults with ASD
within general practice settings as well as the strategies for
successfully providing individualized care. The suggestions
offered and used by the study’s respondents represent current
best practices. More research is needed to evaluate these
strategies as well as internet-based methods for sharing them.
Health reforms to be instituted under the Affordable
Care Act offer opportunities to incorporate new procedures
that could substantially improve health care provision to
adults with ASD. Expanding training for medical students
and residents around caring for this population and further
development of best practices could increase the likelihood
that the reforms will be implemented and the health im-
provements realized.
Acknowledgments This project was supported with funding from a
Grant, R40 MC 19925 through the U.S. Department of Health and
Human Services, Health Resources and Services Administration,
Maternal and Child Health Research Program. We thank the providers
who participated in the study.
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