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Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study

Authors:

Abstract

Objectives: Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences. Design: Following consultation with the autistic community at an autistic conference, Autscape, we developed a self-report survey, which we administered online through social media platforms. Setting: A 52-item, international, online survey. Participants: 507 autistic adults and 157 non-autistic adults. Primary and secondary outcome measures: Self-reported barriers to accessing healthcare and associated adverse health outcomes. Results: Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations and untreated potentially life-threatening conditions. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents. Conclusions: Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives, communication needs and sensory sensitivities. Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.
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DohertyM, etal. BMJ Open 2022;12:e056904. doi:10.1136/bmjopen-2021-056904
Open access
Barriers to healthcare and self- reported
adverse outcomes for autistic adults: a
cross- sectional study
Mary Doherty ,1 Stuart Neilson,2 Jane O'Sullivan,3 Laura Carravallah,4
Mona Johnson,5 Walter Cullen,6 Sebastian C K Shaw 7
To cite: 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:e056904. doi:10.1136/
bmjopen-2021-056904
Prepublication history and
additional supplemental material
for this paper are available
online. To view these les,
please visit the journal online
(http://dx.doi.org/10.1136/
bmjopen-2021-056904).
Received 29 August 2021
Accepted 13 January 2022
1Department of Anaesthesia, Our
Lady's Hospital, Navan, Meath,
Ireland
2Independent Researcher, Cork,
Ireland
3Department of Anaesthesia,
Mater Private Hospital, Dublin,
Leinster, Ireland
4Pediatrics and Human
Development, and Medicine,
Michigan State University-
College of Human Medicine,
East Lansing, Michigan, USA
5Patient Safety, NHS Digital,
Leeds, UK
6Department of General Practice,
School of Medicine, UCD, Dublin,
Ireland
7Department of Medical
Education, Brighton and Sussex
Medical School, Brighton, UK
Correspondence to
Dr Mary Doherty;
drmdoherty@ gmail. com
Original research
© Author(s) (or their
employer(s)) 2022. Re- use
permitted under CC BY- NC. No
commercial re- use. See rights
and permissions. Published by
BMJ.
ABSTRACT
Objectives Autistic people experience poor physical
and mental health along with reduced life expectancy
compared with non- autistic people. Our aim was to identify
self- reported barriers to primary care access by autistic
adults compared with non- autistic adults and to link these
barriers to self- reported adverse health consequences.
Design Following consultation with the autistic
community at an autistic conference, Autscape, we
developed a self- report survey, which we administered
online through social media platforms.
Setting A 52- item, international, online survey.
Participants 507 autistic adults and 157 non- autistic
adults.
Primary and secondary outcome measures Self-
reported barriers to accessing healthcare and associated
adverse health outcomes.
Results Eighty per cent of autistic adults and 37% of non-
autistic respondents reported difculty visiting a general
practitioner (GP). The highest- rated barriers by autistic
adults were deciding if symptoms warrant a GP visit
(72%), difculty making appointments by telephone (62%),
not feeling understood (56%), difculty communicating
with their doctor (53%) and the waiting room environment
(51%). Autistic adults reported a preference for online
or text- based appointment booking, facility to email in
advance the reason for consultation, the rst or last clinic
appointment and a quiet place to wait. Self- reported
adverse health outcomes experienced by autistic adults
were associated with barriers to accessing healthcare.
Adverse outcomes included untreated physical and
mental health conditions, not attending specialist referral
or screening programmes, requiring more extensive
treatment or surgery due to late presentations and
untreated potentially life- threatening conditions. There
were no signicant differences in difculty attending,
barriers experienced or adverse outcomes between
formally diagnosed and self- identied autistic respondents.
Conclusions Reduction of healthcare inequalities
for autistic people requires that healthcare providers
understand autistic perspectives, communication needs
and sensory sensitivities. Adjustments for autism- specic
needs are as necessary as ramps for wheelchair users.
INTRODUCTION
Autism is a common neurodevelop-
mental condition affecting 1%–2% of the
population.1 While autism is lifelong and
heterogeneous in presentation, most autistic
people are adult, do not have intellectual
disability and are likely to be undiagnosed.2
Doctors may underestimate the number of
autistic patients under their care.3 4 Autistic
adults have poor physical and mental health
compared with the general population.5
Most medical conditions are more preva-
lent in the autistic population,6 7 including
diabetes, hypertension and obesity.8 Autistic
people experience premature mortality.9–11
Life expectancy is potentially reduced by
16–30 years, with increased mortality across
almost all diagnostic categories.9 In- hospital
mortality is also increased.12 Autistic people
are over two times as likely to use emergency
departments13 and to die after attending
emergency care and three times as likely to
require inpatient admission.14
Alongside increased health needs, autistic
people report a greater likelihood that
these needs are unmet.13 Pervasive, multi-
factorial barriers to healthcare access are
experienced.15 Some are shared by other
disabled people, but autistic patients expe-
rience additional autism- specific barriers.16
Strengths and limitations of this study
Our study arose from a community- identied need
to develop autism awareness training for health-
care providers and beneted from an autistic- led
research team, including autistic medical doctors,
using participatory methods.
To date, this large cross- sectional study is the rst
to explore the associations between barriers to ac-
cessing healthcare and self- reported adverse health
outcomes for autistic adults.
As we used a convenience sample and self- report
survey, generalisability of the data may be limited.
As the initial pilot questionnaire was undertaken in
the UK, we did not include issues specic to other
healthcare systems, such as cost or insurance, in
this study.
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Open access
Patient–provider communication, sensory sensitivities,
executive functioning/planning difficulties and prior
negative experiences with healthcare providers are
important barriers.17 18
In response to primary legislation19 and statutory guid-
ance,20 the Royal College of General Practitioners devel-
oped an Autism Patient Charter.21 This recommended:
staff awareness and training; autism friendly environ-
ment; reasonable adjustments following disclosure or
clinical suspicion of autism; patient- tailored communica-
tions and behaviour- sensitive accommodations.21 Despite
efforts to champion autism, proposals to formalise
autism training18 22 and specific awareness- raising inter-
ventions,21 almost 40% of general practitioners (GPs)
report no formal training in autism.22 They also report
limited confidence in managing autistic patients.22
Greater autism awareness exists where GPs have personal
knowledge of autism, either through a relative or friend
on the autistic spectrum, or because they themselves are
autistic.22 Communication skills training for healthcare
providers may be the most pressing need.4 GPs22 and
hospital specialists3 report difficulties communicating
with autistic patients. Only 25% of primary healthcare
providers reported high confidence in communicating
with autistic adult patients or identifying and making
necessary accommodations.4
This study primarily aimed to identify self- reported
barriers to accessing primary healthcare faced by autistic
adults with a focus on autism- specific communication,
sensory issues and procedural considerations. Secondary
aims included capturing self- reported adverse health
outcomes and the associations between these and
reported healthcare access barriers, adding a narrative
frame to the existing evidence base around health dispar-
ities. This is to our knowledge the largest study of primary
healthcare access barriers to date and benefits from a high
degree of participatory design by the autistic community.
METHODS
Conception and design
Here, we present part of a larger cross- sectional study.
This work was inspired by a quality improvement project
designed to inform autism training for local healthcare
providers as part of an ‘Autism Friendly Town’ initiative
by AsIAm, Ireland’s National Autism Charity.23 24 In 2018,
MD attended Autscape,25 an annual conference by and
for autistic people. Participants of all ages are welcome
at Autscape, including those who are non- speaking, have
high support needs or require full- time care, although
the majority of attendees typically have low to moderate
support needs. While there, MD distributed a qualita-
tive questionnaire entitled ‘What do you wish your GP
knew about autism?’ MD reviewed the 75 responses and
grouped these under broad themes. That project formed
the inspiration and basis for the study reported in this
paper. Using the data gathered at Autscape, MD devel-
oped an online survey to investigate barriers to primary
healthcare in a larger sample of autistic adults, compared
with a non- autistic adult comparison group. Nine autistic
adults assisted with refining the survey. The resulting
survey contained a mix of quantitative questions and free
comment boxes. Quantitative questions included yes–no
responses, single- item and multiple- item selections from
a list and Likert scales. We asked about specific barriers
encountered accessing healthcare, reasons for delaying
or avoiding a visit and difficulties booking, planning or
waiting for a GP visit. We explored the challenges during
a consultation, including communication, sensory and
organisation issues as well as available social supports.
We also explored the impact of such barriers including
self- reported consequences of failure to access health-
care and the reasonable adjustments to standard care
which facilitate access. We used Google Forms to host
the survey.
Piloting and renement
We piloted the survey in 2018. Preliminary analysis
revealed a recurring theme of total non- engagement with
healthcare providers, despite expressed healthcare needs.
Consequently, we altered the survey to add response
options applicable to non- attenders. Our research team,
comprising autistic and non- autistic GPs, experienced
academics and other autistic individuals, adapted and
refined the survey into its final 52- item form.
Sampling, recruitment and data collection
Autistic adults were recruited using a convenience
sampling approach, through Twitter, Facebook and
the AsIAm website. We recruited non- autistic controls
(without autistic children) through personal and profes-
sional contacts of research team members, local area
groups and parenting groups on social media. Recruit-
ment took place in August 2019. We provided participant
information, with informed consent implied through
subsequent completion of the questionnaire. We asked
respondents, particularly those who were parents, to
respond specifically about seeking healthcare for them-
selves. For those identifying as autistic, we asked if they
were formally diagnosed or self- identified.
Data analysis
We used the statistical package ‘R’ to assess significance
of between- group associations using a test of propor-
tions and a Wilcoxon- Mann- Whitney U test. Participants
who skipped questions were omitted from the analyses
of those questions. We intend to present our qualitative
results elsewhere.
Patient and public involvement
Our study was conducted by an autistic- led research team
including autistic medical doctors, using participatory
methods. In addition, nine autistic individuals assisted
with developing and refining the survey into its final form.
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DohertyM, etal. BMJ Open 2022;12:e056904. doi:10.1136/bmjopen-2021-056904
Open access
RESULTS
Participants
We are reporting 664 responses to the online survey:
507 autistic adults and 157 non- autistic adults (table 1).
Unless otherwise specified, results relate to primary care.
Barriers to access
The most common reason for a GP visit was a physical
condition or illness in both groups (86% vs 92%, n.s.).
Autistic individuals were more likely to attend for mental
health difficulties (61% vs 27%, difference 34%, 95% CI
(25.2% to 42.3%), p<0.001). Twenty- two per cent of the
autistic respondents usually attended for issues directly
related to autism. Compared with 37% of non- autistic
respondents, 80% of autistic respondents reported diffi-
culty visiting a GP when needed (difference 43%, 95% CI
(34.4% to 51.9%), p<0.001). While difficulty deciding if
symptoms warrant a visit was a barrier for both groups
(72% vs 65%, n.s.), the most notable difference related to
difficulties using the telephone to book an appointment
(62% vs 16%). Not feeling understood was a reason to
avoid or delay for 56% of autistic respondents compared
with 13% of non- autistic respondents. Difficulty commu-
nicating with the doctor during the appointment was a
barrier for 53% of the autistic group but only 6% of non-
autistic respondents. See online supplemental table 1 for
specific barriers in order of frequency.
Communication
Alongside difficulty using the telephone, not feeling
understood and difficulty communicating with the
doctor, autistic respondents reported difficulty commu-
nicating with reception staff more often than non- autistic
respondents (46% vs 8%, difference 38%, 95% CI (31.5%
to 44.6%), p<0.001). Fifty nine per cent of autistic respon-
dents reported difficulty communicating during a consul-
tation ‘all the time’ or ‘frequently’ compared with 12%
of non- autistic respondents (p<0.001). Seventy eight per
cent of autistic adults reported that ‘anxiety makes it
harder to communicate’
Autistic respondents reported avoiding the telephone
(78%), voicemail (61%) and face- to- face verbal commu-
nication (30%). Forty one per cent reported that it is
‘easier for me to communicate in writing’ (table 2).
Sensory processing
The waiting room environment was a barrier for 51% of
autistic respondents, but only 8% of non- autistic respon-
dents. Specific sensory barriers are detailed in table 3.
Sensory issues made communication more difficult
for 31% of the autistic group (see table 2). Only 10%
of autistic respondents marked ‘none of the above’ to
sensory questions compared with 71% of non- autistic
respondents.
Perceived stigma
Only 3% of autistic respondents stated they did not feel
anxious going to the doctor, compared with 33% of non-
autistic respondents (difference 30%, 95% CI (−37.7%
to −21.8%) p<0.001). Autistic respondents reported
being ‘concerned I won’t be taken seriously when I
describe my symptoms’ (67%); worried about ‘wasting
the doctor’s time’ (66%) and ‘being considered a hypo-
chondriac’ (65%). They also reported difficulty ‘asking
for help’ (63%) and ‘discussing mental health’ (59%).
Autistic respondents reported that unusual behaviour or
stimming elicited negative reactions from other patients
(15%), reception staff (9%) or medical staff (7%) (online
supplemental table 2).
Planning and organising
Autistic respondents reported difficulties with
summarising when describing medical problems, with
66% noting the ‘need to give the whole story and not
leave anything out’ compared with 12% of non- autistic
respondents (difference 54%, 95% CI (47.1% to 60.9%),
p<0.001). Autistic respondents reported difficulties with
organisation and planning for healthcare, including diffi-
culties ‘making an appointment in advance’ (59%), ‘prior-
itising my health issues’ (58%) and ‘making changes to
my lifestyle or habits’ (56%). Forty five per cent reported
forgetting a medical appointment and 30% had attended
on the wrong day (online supplemental table 3).
Predictability and control
Autistic respondents reported more difficulty with uncer-
tainty than non- autistic respondents. Particular difficul-
ties included not knowing the wait duration (70% vs 30%,
difference 40%, 95% CI (31.5% to 48.7%), p<0.001), what
would happen during the consultation (63% vs 16%,
Table 1 Participant data
Autistic Non- autistic
Participants (n) 507 157
Age
Median (range) 38 (17–73) 38 (18–70)
Gender
Male 99 (20%) 16 (10%)
Female 311 (62%) 132 (85%)
Non- binary 83 (17%) 7 (5%)
Prefer not to say 9 (2%) 1 (1%)
Location
UK 330 (65%) 67 (43%)
Ireland 77 (15%) 63 (40%)
North America 44 (9%) 20 (13%)
Other 56 (11%) 7 (4%)
Formal diagnosis of autism 77%
By psychiatrist 25%
By clinical psychologist 48%
By multidisciplinary team 26%
Age at diagnosis
Median (range) 33 (2–67)
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Table 2 Communication barriers
Autistic n (%) Non- autistic n (%) Difference (95% CI) P value
Reasons to avoid or delay GP visit (communication)
Difculty using the telephone to book an appointment 314 (62) 25 (16) 46% (38.5% to 53.5%) <0.001
Not feeling understood 283 (56) 21 (13) 42% (35.2% to 49.7%) <0.001
Difculty communicating with the doctor during the appointment 269 (53) 10 (6) 47% (40.5% to 52.9%) <0.001
Difculty communicating with the reception staff 235 (46) 13 (8) 38% (31.5% to 44.6%) <0.001
Communication preferences
Telephone generally avoided where possible 395 (78) 59 (38) 40% (31.5% to 49.1%) <0.001
Voicemail generally avoided where possible 311 (61) 61 (39) 23% (13.3% to 31.6%) <0.001
Verbal, face- to- face communication generally avoided where possible 152 (30) 12 (8) 22% (16.2% to 28.5%) <0.001
It is easier for me to communicate in writing 208 (41) 13 (8) 33% (26.3% to 39.2%) <0.001
Communication challenges
Anxiety makes it harder to communicate 395 (78) 42 (23) 51% (42.9% to 59.4%) <0.001
Sensory issues make communication more difcult 156 (31) 2 (1) 30% (24.7% to 34.3%) <0.001
I need extra time to process what is being said 286 (56) 12 (8) 49% (42.4% to 55.2%) <0.001
I can’t describe my pain or symptoms accurately 272 (54) 36 (23) 31% (22.4% to 39.0%) <0.001
Verbal communication is difcult 234 (46) 11 (7) 39% (32.8% to 45.5%) <0.001
I express emotions differently for example, I can appear angry when I am afraid or in pain 227 (45) 6 (4) 41% (35.3% to 46.6%) <0.001
I have difculty prioritising when describing medical symptoms 333 (66) 34 (22) 44% (36.0% to 52.1%) <0.001
I need to give the whole story and not leave anything out 332 (66) 18 (12) 54% (47.1% to 60.9%) <0.001
None of the above (communication) 11 (2) 58 (37) −35% (−42.8% to −26.7%) <0.001
GP, general practitioner.
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difference 47%, 95% CI (39.7% to 54.7%), p<0.001),
which doctor they would see (58% vs 24%, difference
33%, 95% CI (25.0% to 41.8%), p<0.001) and the consul-
tation length (40% vs 8%, difference 32%, 95% CI (25.6%
to 38.4%) p<0.001).
Support needs
Autistic adults reported physical mobility needs (16%)
and unmet support needs in primary care, for example,
‘needing a support person to come with me’ (21%). This
extended to secondary care: 17% had no one to support
unexpected hospital admission, collection from hospital
(20%) or home care following discharge (26%) (online
supplemental table 4).
Adverse consequences
Autistic respondents reported adverse consequences
more frequently than non- autistic respondents, including
untreated mental (69%) and physical (63%) health
conditions. Notably, 60% were told they ‘should have
seen a doctor sooner’ and 47% ‘did not attend referral to
a specialist’. Thirty- six per cent ‘required more extensive
treatment or surgery’ and 34% did not access treatment
for a ‘potentially serious or life- threatening condition’.
Additionally, they were less likely to ‘attend on schedule
for screening programmes’ than the non- autistic respon-
dents (39% vs 21%, difference 18%, 95% CI (9.8% to
26.2%), p<0.001) (figure 1).
Compared with autistic respondents who had no diffi-
culty visiting a doctor, those who experienced difficulty
(80%) reported more untreated mental and physical
health conditions (p<0.001). They were also more likely
to not attend specialist referral (p<0.001), to need more
extensive treatment (p=0.009), to experience untreated
life- threatening conditions (p=0.006) and to not attend
screening (p=0.028) (figure 2). Four per cent of autistic
respondents reported no access to primary healthcare
and did not attend any doctor at all. This group differed
from the non- autistic respondents who reported no access
to primary healthcare (5%) in two areas: all had difficulty
visiting the doctor when needed, compared with 50% of
non- attending non- autistic respondents (p=0.002); and
95% of autistic non- attenders had experienced at least
one delayed treatment outcome, compared with 43% of
non- attending, non- autistic respondents (p=0.01). There
were no significant differences in difficulty attending
a GP, the barriers experienced or adverse outcomes
between formally diagnosed and self- identified autistic
respondents.
Facilitators
While most respondents (67% vs 65%) reported booking
an appointment online would facilitate access, autistic
patients selected a need to ‘email my doctor in advance
with a description of the issue I need to discuss’ (62%),
‘wait in a quiet place or outside until my turn’ (56%)
and ‘book an appointment by text’ (41%). Some autistic
Table 3 Sensory barriers
Autistic n (%) Non- autistic n (%) Difference (95% CI) P value
Reasons to avoid or delay GP visit (sensory)
The waiting room environment 256 (51) 12 (8) 42.8% (36.4% to 49.3%) <0.001
Specic sensory challenges
Noise in the waiting room from other patients 319 (63) 19 (12) 51% (43.8% to 57.8%) <0.001
Crowded waiting area 299 (59) 22 (14) 45% (37.6% to 52.3%) <0.001
Bright or uorescent lights 268 (53) 14 (9) 44% (37.3% to 50.6%) <0.001
Uncomfortable furniture 195 (39) 11 (7) 32% (25.2% to 37.7%) <0.001
Unexpected touch 193 (38) 9 (6) 32% (26.3% to 38.3%) <0.001
Music playing in the waiting room 172 (34) 9 (6) 28% (22.3 to 34.1%) <0.001
Smells in the waiting room 171 (34) 8 (5) 29% (22.9% to 34.4%) <0.001
Touch during examination 160 (32) 11 (7) 25% (18.5% to 30.7%) <0.001
Noise from the reception desk 140 (28) 4 (3) 25% (20.0% to 30.1%) <0.001
Smells in the doctor’s ofce 104 (21) 6 (4) 17% (11.7% to 21.7%) <0.001
None of the above (sensory) 51 (10) 112 (71) −61% (−69.2% to −53.3%) <0.001
GP, general practitioner.
Figure 1 Adverse healthcare outcomes. For all comparisons
between autistic and non- autistic groups p<0.001.
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Open access
individuals would benefit if they ‘could book the first or
last appointment’ (41%) or had a ‘sensory box available
in the waiting room’ (16%) (online supplemental table
5).
Despite the outlined difficulties of visiting their
doctor, autistic individuals felt that their relation-
ship with their GP was ‘very important’ or ‘important’
significantly more than non- autistic respondents (70%
vs 56%, p=0.001), but only 33% of autistic respon-
dents reported a good relationship with their doctor
(p<0.001). Only 62% of autistic individuals reported
that their doctor knew they were autistic. Twenty two
per cent were unsure, whereas 16% had not disclosed
their diagnosis. Autistic respondents appreciated GPs
who ask direct questions, give clear explanations, are
honest about not understanding autism but know that
autism is not a mental illness.
Geographical variations
Some barriers to access for autistic respondents varied
by geographical location (UK vs elsewhere in the world).
Autistic respondents from the UK had more difficulty
using the telephone to book appointments (66% vs 54%,
p=0.012), more difficulty communicating with reception
staff (52% vs 37%, p=0.002) and were less likely to experi-
ence no barriers to access at all (0.3% vs 2.8%, p=0.038).
Autistic respondents from the UK also found it harder to
see a known or preferred doctor (58% vs 29%, p<0.001),
reported longer waits to get appointments (59% vs 33%,
p<0.01) and found their online appointment booking
systems more confusing (26% vs 10%, p<0.001). However,
they were less likely to report no access to online booking
systems compared with those from elsewhere in the world
(26% vs 42%, p<0.001). There were no other significant
differences for autistic respondents by geographical
location.
There was only one significant geographical variation
in self- reported adverse outcomes. For autistic respon-
dents, those in the UK were less likely than those from
elsewhere in the world to miss/not attend specialist refer-
rals (43% vs 55%, p=0.019).
Figure 2 Adverse outcomes according to difculty
attending a GP. **p<0.001 *p<0.05. y- axis=N. GP, general
practitioner.
Table 4 Barriers and outcomes associations for autistic respondents
Untreated
mental health
condition
Untreated
physical health
condition
Specialist
referral
missed
Told they should
have presented
sooner
More extensive
treatment or surgery
required
Serious or
life- threatening
condition
Difculty using the telephone to book an appointment p<0.001 p<0.001 p=0.036 p=0.015 n.s. p=0.007
Difculty with advance planning p=0.020 p=0.032 p<0.001 p=0.030 n.s. n.s.
Difculty communicating with reception staff p<0.001 p<0.001 p=0.008 p<0.001 p=0.041 p=0.004
Difculty communicating with the doctor during the
appointment
p<0.001 p<0.001 p<0.001 p=0.003 p=0.003 p=0.002
The waiting room environment p=0.007 p<0.001 n.s. p=0.010 p<0.001 n.s
Inability to see a known or preferred doctor p<0.001 p=0.003 n.s. p=0.027 n.s. n.s
Waiting to see the doctor is too difcult p=0.018 p=0.001 n.s. n.s. p=0.026 n.s.
Not feeling understood p<0.001 p<0.001 p<0.001 n.s. n.s. p=0.026
Needing a support person to come with me n.s. p=0.002 p=0.004 n.s. p=0.009 p=0.002
n.s, not signicant.
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Associations between barriers and outcomes for autistic
respondents
Table 4 outlines associations between reported barriers
and outcomes for autistic respondents. There were no
significant associations between any adverse outcomes
and difficulty deciding if symptoms warrant a GP visit,
not having an online booking system, having a confusing
online booking system, having a long wait to get an
appointment or having enough time to visit a doctor. In
contrast, difficulty communicating with reception staff
and difficulty communicating with the doctor during
appointments were both significantly associated with all
adverse outcomes.
Difficulty using the telephone to book an appointment
was significantly associated with all adverse outcomes
apart from having to undergo more extensive treatment
or surgery than if they had attended sooner. Challenges
with the waiting room environment were significantly
associated with all adverse outcomes apart from missing
specialist referrals and having a potentially serious or life-
threatening condition for which they did not access treat-
ment. Difficulty planning an appointment in advance
was significantly associated with all adverse outcomes
apart from having a potentially serious or life- threatening
condition for which they did not access treatment, and
having to undergo more extensive treatment or surgery
than if they had attended sooner. Needing a support
person to attend appointments was significantly associ-
ated with all adverse outcomes apart from having had a
mental health condition remain untreated due to diffi-
culties accessing healthcare and being told they should
have presented sooner. Not feeling understood was
significantly associated with all adverse outcomes apart
from being told they should have presented sooner and
having to undergo more extensive treatment or surgery
than if they had attended sooner.
The inability to see a known or preferred doctor was
significantly associated with having both untreated mental
and physical health conditions. It was also significantly
associated with being told they should have presented
sooner. Finding waiting to see a doctor too difficult
was significantly associated with having both untreated
mental and physical health conditions. It was also signifi-
cantly associated with having to undergo more extensive
treatment or surgery than if they had attended sooner.
Reporting no barriers to access healthcare had no
significant associations with any of the adverse outcomes.
DISCUSSION
Our study describes the results of a survey of autistic
adults and compares their experiences with non-
autistic adults. It highlights barriers faced by autistic
people accessing and engaging with primary health-
care. In our study, these included greater difficulties
deciding when to seek care, reluctance to bother their
GP, difficulties planning appointments and greater
communication difficulties—with particular emphasis
on telephone use. Communication was also impaired
by anxiety and sensory issues. We linked those barriers
to self- reported adverse outcomes. Our data indicated
that autistic people may present for healthcare later
in the natural course of an illness. Autistic partici-
pants reported reduced attendance for screening, late
presentations, missed opportunities for early detection
and more extensive therapy being required. They also
delayed or avoided healthcare because they did not feel
understood by their doctors. Furthermore, a substantial
minority of autistic adults did not disclose their autism
diagnosis, which may impede identification of their
autism- specific needs. These barriers may have real
consequences, as evidenced in reduced life expectancy,
and higher levels of physical and mental health condi-
tions among autistic people.
Comparison with the existing literature
This study confirms the findings of Vohra,14 Raymaker16
and several recent reviews,15 17 26 which all identified
three groups of barriers: (1) patient- level factors; (2)
provider- level factors and (3) system- level factors. Our
study stratifies individual barriers from the perspective
of autistic individuals. We couple these barriers to self-
reported adverse consequences, highlighting factors that
may lead to excess morbidity and mortality in the autistic
population.
Strengths and limitations
Our study arose from a community- identified need
to develop autism awareness training for healthcare
providers. It benefited from an autistic- led research
team, including autistic doctors, using participatory
methods. Our study provided a unique picture of autistic
adults’ healthcare experiences, including those entirely
excluded from healthcare due to access barriers. In
particular, we highlighted the difficulties with using the
telephone which is a distilled, concentrated essence of
verbal communication.
As we used a convenience sample and self- report
survey, generalisability of the data may be limited.
Respondents required the ability to complete the survey,
which excluded those with reduced ability to self- report.
While we did not set out to create a validated tool, our
survey may have benefited from some validity and reli-
ability testing. As the initial quality improvement ques-
tionnaire was undertaken in the UK, we did not include
issues specific to other healthcare systems, such as cost
or insurance. Our analyses did not account for potential
confounding factors, such as ethnicity or socioeconomic
status. Female participants were over- represented in both
groups, which is not unusual for online surveys, but it is
interesting given the higher rate of autism diagnosis in
men. While we noted significant gender differences in
relation to non- binary participants, these participants
were almost all autistic and we were, therefore, unable
to attribute differences to gender identity or autism with
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Open access
any degree of certainty. Furthermore, as this is a cross-
sectional study, while we can identify associations, we
cannot confirm causality.
Implications for research
Our study suggests a need for personalised approaches
to healthcare access. A prior study investigated using a
previsit telephone call to identify individualised accom-
modations.27 Our data suggest that this could be prob-
lematic for autistic adults. The AASPIRE Healthcare
Toolkit28 includes a publicly available online programme,
which generates a computerised report of required
healthcare accommodations. Adaptation of such a
toolkit in NHS General Practice should be considered
and researched. Social care interventions and health-
care facilitators in general practice have shown benefit
with a vulnerable population,29 similar approaches
could benefit an autistic population. The significant
difficulties among the small number of autistic people
not registered with any GP indicate a need for further
research into this group.
Implications for clinical practice
Based on online supplemental table 5 and the lived
experience of the autistic members of our research
team, figure 3 outlines our proposed elements of an
autism friendly practice. Such adjustments may mini-
mise anxiety, manage sensory issues and ensure mutual
understanding—promoting clear, unambiguous commu-
nication. Autism friendly practices should employ a
personalised approach, with a healthcare access needs
assessment and, where possible, a specialist liaison nurse
or facilitator.
Implications for policy
Given the identified barriers, the extension of annual
health checks to autistic adults30 31 and the recently
announced Oliver McGowan Mandatory Training in
Learning Disability and Autism32 are welcome. These
will likely bring important benefits provided they are
informed by the autistic community and autistic health-
care providers. Autism registers in GP practice have
been recommended.33 34 The success of such initiatives
will likely depend on greater awareness by medical prac-
titioners of autistic culture and communication needs.
Specific training for GPs during core training and
continuing professional development may be beneficial.
GPs with a special interest in autism should be facilitated
to develop their skills, but management of general health
needs and co- occurring conditions fall within the remit
of every GP. Implementing existing autism legislation or
development where lacking is required in order to reduce
health inequities for autistic people.
CONCLUSIONS
Autistic people face barriers accessing the healthcare
system, followed by difficulties interacting with healthcare
providers, which may contribute to known healthcare
disparities, including increased morbidity and mortality.
Our study has highlighted a variety of specific barriers to
accessing primary healthcare for autistic adults, including
use of the telephone to book appointments, not feeling
understood, and difficulty communicating with doctors
as well as sensory and organisational issues, which impede
healthcare access. We identified a variety of significant
associations between self- reported barriers to healthcare
access and adverse outcomes for autistic respondents.
One of our most impactful findings was the lack of any
significant differences between formally diagnosed and
self- identified autistic respondents in difficulty attending
a GP, barriers experienced or self- reported adverse
healthcare outcomes. Progress towards eliminating
healthcare disparities for autistic people may be achieved
by understanding the healthcare experiences and access
barriers for this vulnerable patient group. These barriers
represent not so much a failure to deliver or to avail
of healthcare, but a lack of intersection between the
communication patterns of autistic healthcare users and
non- autistic providers. Reasonable accommodations are
legally35 and morally required. Adjustments for commu-
nication needs are as necessary for autistic people as
ramps for wheelchair users.
Twitter Mary Doherty @AutisticDoctor and Sebastian C K Shaw @Autistic_Doc
Acknowledgements We are indebted to Professor Louise Gallagher for her
guidance during the early stages of this project. We acknowledge the input received
from the autistic adult community recruited via local groups and online contacts
during the development of the online survey. Assistance with content, structure
and proofreading of the surveys was received from nine autistic adults in Ireland
and the UK. We received assistance from members of peer support group ‘Autistic
Doctors International’. We also thank Dr David Hillebrandt, Dr Natalie Teasdale,
Elaine McGoldrick and Karen Leneh Buckle for their assistance during this project.
Figure 3 Autism friendly general practice.
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Open access
Contributors Conception and design of study: MD, SN, JO'S, with contributions
from those listed in acknowledgements. Acquisition of data: MD, SN, JO'S. Analysis
of data: SN, MD, SCKS. Interpretation of data: MD, SN, JO'S, LC, MJ, WC, SCKS.
Drafting and revising the manuscript: MD, SN, JO'S, LC, MJ, WC, SCKS. Approval of
the version of the manuscript to be published: MD, SN, JO'S, LC, MJ, WC, SCKS. MD
is the Guarantor of this work.
Funding We are grateful to AsIAm, Ireland’s National Autism Charity and Scally’s
SuperValu, Clonakilty, for the funding to enable open access publication.
Competing interests None declared.
Patient consent for publication Not applicable.
Ethics approval This study involves human participants and was approved by
SJH/TUH Joint Research and Ethics Committee REC: 2019- 06 Chairman’s Action
(17). Participants gave informed consent to participate in the study before taking
part.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request. All data
relevant to the study are included in the article or uploaded as supplementary
information.
Supplemental material This content has been supplied by the author(s). It has
not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been
peer- reviewed. Any opinions or recommendations discussed are solely those
of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and
responsibility arising from any reliance placed on the content. Where the content
includes any translated material, BMJ does not warrant the accuracy and reliability
of the translations (including but not limited to local regulations, clinical guidelines,
terminology, drug names and drug dosages), and is not responsible for any error
and/or omissions arising from translation and adaptation or otherwise.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which
permits others to distribute, remix, adapt, build upon this work non- commercially,
and license their derivative works on different terms, provided the original work is
properly cited, appropriate credit is given, any changes made indicated, and the use
is non- commercial. See:http://creativecommons.org/licenses/by-nc/4.0/.
ORCID iDs
MaryDoherty http://orcid.org/0000-0002-6995-3745
Sebastian C KShaw http://orcid.org/0000-0001-9597-7436
REFERENCES
1 Data CDC. Statistics. autism spectrum disorder. Resource document.
Available: https://www.cdc.gov/ncbddd/autism/data.html
2 Royal College of Psychiatrists. The psychiatric management of
autism in adults (CR228). Available: https://www.rcpsych.ac.uk/
improving-care/campaigning-for-better-mental-health-policy/college-
reports/2020-college-reports/cr228 [Accessed 24 Jul 2021].
3 Zerbo O, Massolo ML, Qian Y, etal. A study of physician knowledge
and experience with autism in adults in a large integrated healthcare
system. J Autism Dev Disord 2015;45:4002–14.
4 Nicolaidis C, Schnider G, Lee J, etal. Development and
psychometric testing of the AASPIRE adult autism healthcare
provider self- efcacy scale. Autism 2021;25:767–73.
5 Rydzewska E, Hughes- McCormack LA, Gillberg C, etal. General
health of adults with autism spectrum disorders – a whole country
population cross- sectional study. Res Autism Spectr Disord
2019;60:59–66.
6 Croen LA, Zerbo O, Qian Y, etal. The health status of adults on the
autism spectrum. Autism 2015;19:814–23.
7 Xue Ming, Brimacombe M, Chaaban J, etal. Autism spectrum
disorders: concurrent clinical disorders. J Child Neurol 2008;23:6–13.
8 Flygare Wallén E, Ljunggren G, Carlsson AC, etal. High prevalence
of diabetes mellitus, hypertension and obesity among persons with
a recorded diagnosis of intellectual disability or autism spectrum
disorder. J Intellect Disabil Res 2018;62:269–80.
9 Hirvikoski T, Mittendorfer- Rutz E, Boman M, etal. Premature
mortality in autism spectrum disorder. Br J Psychiatry
2016;208:232–8.
10 Hwang YIJ, Srasuebkul P, Foley K- R, etal. Mortality and cause
of death of Australians on the autism spectrum. Autism Res
2019;12:806–15.
11 Bilder D, Botts EL, Smith KR, etal. Excess mortality and causes
of death in autism spectrum disorders: a follow up of the 1980s
Utah/UCLA autism epidemiologic study. J Autism Dev Disord
2013;43:1196–204.
12 Akobirshoev I, Mitra M, Dembo R, etal. In- hospital mortality
among adults with autism spectrum disorder in the United States:
a retrospective analysis of US hospital discharge data. Autism
2020;24:177–89.
13 Nicolaidis C, Raymaker D, McDonald K, etal. 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 2013;28:761–9.
14 Vohra R, Madhavan S, Sambamoorthi U. Emergency department use
among adults with autism spectrum disorders (ASD). J Autism Dev
Disord 2016;46:1441–54.
15 Walsh C, Lydon S, O’Dowd E, etal. Barriers to healthcare for persons
with autism: a systematic review of the literature and development of
a taxonomy. Dev Neurorehabil 2020;8:1–8.
16 Raymaker DM, McDonald KE, Ashkenazy E, etal. Barriers to
healthcare: instrument development and comparison between
autistic adults and adults with and without other disabilities. Autism
2017;21:972–84.
17 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. J Autism Dev Disord
2019;49:3387–400.
18 Vogan V, Lake JK, Tint A, etal. Tracking health care service use and
the experiences of adults with autism spectrum disorder without
intellectual disability: a longitudinal study of service rates, barriers
and satisfaction. Disabil Health J 2017;10:264–70.
19 Autism Act UK. HM Government, 2009. Available: https://www.
legislation.gov.uk/ukpga/2009/15/contents
20 Department of Health. Implementing fullling and rewarding lives.
Statutory guidance for local authorities and NHS organisation to
support implementation of the autism strategy. London: Department
of Health, 2010.
21 Buckley C. Making your practice autism friendly. InnovAiT
2017;10:327–31.
22 Unigwe S, Buckley C, Crane L, etal. GPs’ condence in caring for
their patients on the autism spectrum: an online self- report study. Br
J Gen Pract 2017;67:e445–52.
23 AsIAm. A rst for Ireland with Clonakilty becoming Ireland’s rst
autism friendly town, 2016. Available: https://asiam.ie/clonakilty-
autism-friendly-town/
24 AsIAm. Are you ready to make your Clonakilty commitment for
Autism?, 2020. Available: https://asiam.ie/asiam-public-sector-
training/autism-friendly-communities/
25 The Autscape Organisation. Autscape 2018: exploring inclusion.
Tonbridge, Kent, 2018. Available: http://www.autscape.org/2018/
26 Bradshaw P, Pellicano E, van Driel M, etal. How can we support the
healthcare needs of autistic adults without intellectual disability? Curr
Dev Disord Rep 2019;6:45–56.
27 Saqr Y, Braun E, Porter K, etal. Addressing medical needs of
adolescents and adults with autism spectrum disorders in a primary
care setting. Autism 2018;22:51–61.
28 Nicolaidis C, Raymaker D, McDonald K, etal. The development and
evaluation of an online healthcare toolkit for autistic adults and their
primary care providers. J Gen Intern Med 2016;31:1180–9.
29 Abel J, Kingston H, Scally A, etal. Reducing emergency hospital
admissions: a population health complex intervention of an
enhanced model of primary care and compassionate communities.
Br J Gen Pract 2018;68:e803–10.
30 National Institute for Health and Care Excellence. Chapter 3:
Learning disability and Autism. In: Long term plan [London], 2019.
https://www.longtermplan.nhs.uk/online-version/chapter-3-further-
progress-on-care-quality-and-outcomes/a-strong-start-in-life-for-
children-and-young-people/learning-disability-and-autism/
31 Harper G, Smith E, Parr J. Autistica action brieng: health checks.
Available: https://www.autistica.org.uk/downloads/les/Autistica-
Action-Brieng-Health-Checks.pdf
32 Health Education England. Partners announced to deliver the Oliver
McGowan mandatory learning disability and autism training for all
health and social care staff, 2020. Available: https://www.hee.nhs.
uk/news-blogs-events/news/partners-announced-deliver-oliver-
mcgowan-mandatory-learning-disability-autism-training-all-health
33 National Institute for Health and Care Excellence. The practice
establishes and maintains a register of all patients with a diagnosis
of autism [London] ([NM153]]), 2017. Available: https://www.
nice.org.uk/standards-and-indicators/qondicators/the-practice-
establishes-and-maintains-a-register-of-all-patients-with-a-
diagnosis-of-autism
on February 22, 2022 by guest. Protected by copyright.http://bmjopen.bmj.com/BMJ Open: first published as 10.1136/bmjopen-2021-056904 on 22 February 2022. Downloaded from
10 DohertyM, etal. BMJ Open 2022;12:e056904. doi:10.1136/bmjopen-2021-056904
Open access
34 Westminster Commission on Autism. A spectrum of obstacles
an inquiry into access to healthcare for autistic people. Available:
https://westminsterautismcommission.les.wordpress.com/2016/03/
ar1011_ncg-autism-report-july-2016.pdf
35 Great Britain. Equality act 2010. London: Stationary Ofce, 2010.
on February 22, 2022 by guest. Protected by copyright.http://bmjopen.bmj.com/BMJ Open: first published as 10.1136/bmjopen-2021-056904 on 22 February 2022. Downloaded from
... articles 11,12 from the authors explore this further and offer practical, reasonable adjustments to meet the needs of these patients. ...
... Autistic adults report that barriers to primary care lead to poorer health outcomes, identifying predictability, sensory processing, and communication as key domains under which such barriers fall. 11 Alongside discrete domains of difficulty, there is a consistent sense that the poor overall understanding of what autism is by all staff affects their care. This aligns with findings of the 2019 'Right to be heard' report, 13 ...
... Instead, we urge focusing more resources on causes of mortality, improving our access to health care [45][46][47][48][49] and mental health support, [50][51][52][53] and large-scale monitoring of the effects of better access. This should include the impact on the detection and treatment of co-occurring conditions. ...
... Instead, we urge focusing more resources on causes of mortality, improving our access to health care [45][46][47][48][49] and mental health support [50][51][52][53] , and large-scale monitoring of the effects of better access. This should include the impact on the detection and treatment of co-occurring conditions. ...
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Little has been reported about how to improve health care access and delivery for adolescents and adults with autism spectrum disorder. To understand the contributions to the health disparities in the autism spectrum disorder population, we conducted two independent research approaches to learn about current medical needs. A retrospective chart review was performed to evaluate medical comorbidities and medication use. A focus group was also created to address barriers faced in providing medical care. Of 126 charts reviewed, 49% (n = 62) had intellectual disability, 49% (n = 62) had attention-deficit hyperactivity disorder, 52% (n = 65) had anxiety, 41% (n = 52) had obesity, 31% (n = 39) with a history of aggressive behavior, 31% (n = 31) had depression, 22% (n = 28) had seizures, and 9% (n = 11) had hypertension. A Medical Regimen Complexity Index score was determined to examine medication use trends in the autism spectrum disorder population. Medical Regimen Complexity Index scores were significantly higher for patients with intellectual disability, patients with seizures, and patients with a history of aggressive behavior. Both the focus group and our pre-visit assessment identified the waiting room and waiting time as barriers to care. Understanding the comorbidities, polypharmacy, and medical barriers should provide a better understanding of the current health care access and delivery needs of adolescents and adults with autism spectrum disorder.
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Lay abstract: The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively.
Article
Background: Reducing emergency admissions to hospital has been a cornerstone of healthcare policy. Little evidence exists to show that systematic interventions across a population have achieved this aim. The authors report the impact of a complex intervention over a 44-month period in Frome, Somerset, on unplanned admissions to hospital. Aim: To evaluate a population health complex intervention of an enhanced model of primary care and compassionate communities on population health improvement and reduction of emergency admissions to hospital. Design and setting: A cohort retrospective study of a complex intervention on all emergency admissions in Frome Medical Practice, Somerset, compared with the remainder of Somerset, from April 2013 to December 2017. Method: Patients were identified using broad criteria, including anyone giving cause for concern. Patient-centred goal setting and care planning combined with a compassionate community social approach was implemented broadly across the population of Frome. Results: There was a progressive reduction, by 7.9 cases per quarter (95% confidence interval [CI] = 2.8 to 13.1, P = 0.006), in unplanned hospital admissions across the whole population of Frome during the study period from April 2013 to December 2017, a decrease of 14.0%. At the same time, there was a 28.5% increase in admissions per quarter within Somerset, with a rise in the number of unplanned admissions of 236 per quarter (95% CI = 152 to 320, P<0.001). Conclusion: The complex intervention in Frome was associated with highly significant reductions in unplanned admissions to hospital, with a decrease in healthcare costs across the whole population of Frome.
Article
Background: Obesity and lack of physical activity are frequently reported in persons with intellectual disability (ID) or autism spectrum disorder (ASD). We hypothesised a higher prevalence of diabetes and hypertension in this population. Method: We used administrative data for all primary and specialist outpatient and inpatient healthcare consultations for people with at least one recorded diagnosis of diabetes mellitus, hypertension or obesity from 1998 to 2015. Data were drawn from the central administrative database for Stockholm County, Sweden. It was not possible to separate data for type 1 and type 2 diabetes. We stratified 26 988 individuals with IDs or ASD into three groups, with Down syndrome treated separately, and compared these groups with 1 996 140 people from the general population. Results: Compared with the general population, men and women with ID/ASD had 1.6-3.4-fold higher age-adjusted odds of having a registered diagnosis of obesity or diabetes mellitus, with the exception of diabetes among men with Down syndrome. A registered diagnosis of hypertension was only more common among men with ID/ASD than in the general population. Conclusions: Diabetes and blood pressure health screening, along with efforts to prevent development of obesity already in childhood, are necessary for individuals with IDs and ASD. We believe that there is a need for adapted community-based health promotion programmes to ensure more equitable health for these populations.