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Table 3 Self-reported lower quality healthcare experiences for autistic adults compared to non-autistic adults

From: Autistic adults have poorer quality healthcare and worse health based on self-report data

 

Autistic N (%)

Non-autistic N (%)

Unadjusted model

Adjusted modela

OR (95% CI)

p-value

OR (95% CI)

p-value

Able to see healthcare professionals as often as they would like

693 (54.14)

1041 (76.38)

0.365

(0.308, 0.433)

 < 2.22 × 10–16

0.409

(0.343, 0.487)

 < 2.22 × 10–16

Has health insurance or is part of a national healthcare program (e.g. NHS, Medicare, Medicaid, etc.)

991 (78.78)

1095 (82.89)

0.766

(0.626, 0.937)

7.97 × 10–3

1.026

(0.824, 1.277)

0.818

Sensory experience

Reported at least one sensory difference (hyper- or hyposensitivity)

1199 (93.31)

609 (44.65)

17.263

(13.494, 22.298)

 < 2.22 × 10–16

17.984

(13.970, 23.152)

 < 2.22 × 10–16

I am able to describe how my symptoms feel in my body

707 (55.58)

1174 (87.35)

0.181

(0.148, 0.221)

 < 2.22 × 10–16

0.187

(0.152, 0.230)

 < 2.22 × 10–16

I am able to describe how bad my pain feels

650 (51.06)

1129 (84.00)

0.199

(0.165, 0.239)

 < 2.22 × 10–16

0.193

(0.158, 0.234)

 < 2.22 × 10–16

I am able to describe my sensory processing differences to healthcare professionals

496 (41.96)

355 (59.97)

0.483

(0.393, 0.593)

1.00 × 10–12

0.480

(0.388, 0.594)

2.11 × 10–11

The sensory environment of the waiting room is more overwhelming than other environments

896 (70.44)

420 (31.37)

5.211

(4.398, 6.183)

 < 2.22 × 10–16

5.253

(4.404, 6.266)

 < 2.22 × 10–16

The sensory environment of the office is more overwhelming than other environments

745 (58.66)

343 (25.56)

4.131

(3.489, 4.896)

 < 2.22 × 10–16

4.202

(3.524, 5.011)

 < 2.22 × 10–16

My senses frequently overwhelm me so that I have trouble focusing on conversations with healthcare professionals

801 (62.97)

240 (17.87)

7.809

(6.503, 9.400)

 < 2.22 × 10–16

7.587

(6.267, 9.185)

 < 2.22 × 10–16

Communication

I am usually able to explain what my symptoms are

848 (66.93)

1213 (91.27)

0.194

(0.153, 0.243)

 < 2.22 × 10–16

0.202

(0.159, 0.256)

 < 2.22 × 10–16

I usually understand what my healthcare professional means when they discuss my health

957 (75.47)

1251 (94.20)

0.190

(0.144, 0.248)

 < 2.22 × 10–16

0.198

(0.150, 0.261)

 < 2.22 × 10–16

I do not usually ask all the questions I would like to about my health

983 (77.71)

745 (56.31)

2.703

(2.271, 3.223)

 < 2.22 × 10–16

2.503

(2.089, 2.999)

 < 2.22 × 10–16

I can bring up a health concern even if my healthcare professional doesn't ask about it

704 (55.65)

1019 (76.96)

0.376

(0.316, 0.446)

 < 2.22 × 10–16

0.365

(0.304, 0.439)

 < 2.22 × 10–16

I know what is expected of me when I go to see my healthcare professional

665 (52.45)

1099 (82.82)

0.229

(0.190, 0.275)

 < 2.22 × 10–16

0.217

(0.179, 0.264)

 < 2.22 × 10–16

Anxiety

The idea of going to see a healthcare professional makes me feel anxious

1044 (82.79)

813 (61.73)

2.981

(2.473, 3.602)

 < 2.22 × 10–16

2.797

(2.308, 3.390)

 < 2.22 × 10–16

The environment of the waiting room or office makes me feel anxious

1003 (79.67)

602 (45.75)

4.644

(3.887, 5.559)

 < 2.22 × 10–16

4.509

(3.751, 5.421)

 < 2.22 × 10–16

I feel anxious when I see a different healthcare professional to whom I expect

1053 (83.70)

595 (45.28)

6.202

(5.140, 7.505)

 < 2.22 × 10–16

6.111

(5.036, 7.414)

 < 2.22 × 10–16

The process of setting up an appointment makes me anxious

1053 (83.70)

715 (54.37)

4.308

(3.570, 5.212)

 < 2.22 × 10–16

4.500

(3.700, 5.475)

 < 2.22 × 10–16

The process of picking up a prescription makes me anxious

716 (57.05)

320 (24.37)

4.119

(3.471, 4.897)

 < 2.22 × 10–16

4.084

(3.410, 4.892)

 < 2.22 × 10–16

I frequently leave my healthcare professional's office feeling as though I did not receive any help at all

786 (62.43)

428 (32.55)

3.442

(2.918, 4.064)

 < 2.22 × 10–16

3.233

(2.729, 3.830)

 < 2.22 × 10–16

Access and advocacy

Chosen not to go in to see a healthcare professional

996 (79.30)

850 (65.69)

2.000

(1.668, 2.402)

1.44 × 10–14

2.145

(1.777, 2.590)

3.11 × 10–15

I know who to contact if I have a healthcare concern

951 (75.84)

1120 (86.49)

0.491

(0.397, 0.605)

5.69 × 10–12

0.449

(0.359, 0.563)

4.43 × 10–12

If I need to go see a healthcare professional, I am able to get there

1017 (81.30)

1215 (93.82)

0.286

(0.216, 0.376)

 < 2.22 × 10–16

0.301

(0.225, 0.401)

4.44 × 10–16

I usually bring someone along to help support me in my appointments

432 (34.45)

267 (20.65)

2.019

(1.684, 2.424)

6.12 × 10–15

2.296

(1.874, 2.813)

1.55 × 10–15

If I need to go to the pharmacy, I am able to get there

1101 (87.87)

1252 (96.75)

0.243

(0.167, 0.348)

 < 2.22 × 10–16

0.294

(0.203, 0.425)

9.67 × 10–11

I am able to follow a procedure for next steps if asked (for example, I will attend follow-up appointments, annual checkups if applicable, etc.)

1009 (80.59)

1188 (91.88)

0.367

(0.285, 0.471)

 < 2.22 × 10–16

0.348

(0.268, 0.452)

4.22 × 10–15

I am able to make appointments for myself

1022 (81.56)

1188 (92.09)

0.380

(0.294, 0.489)

2.54 × 10–15

0.334

(0.252, 0.443)

2.75 × 10–14

I will wait until it is an emergency before I go to see a healthcare professional

815 (64.99)

673 (52.09)

1.707

(1.451, 2.009)

4.02 × 10–11

1.619

(1.369, 1.915)

2.09 × 10–8

System problems

In most appointments, I have enough time to discuss my concerns with healthcare professionals

515 (41.47)

880 (69.79)

0.307

(0.259, 0.363)

 < 2.22 × 10–16

0.337

(0.284, 0.401)

 < 2.22 × 10–16

If I need to go to see a specialist for a healthcare concern, I am able to do so

762 (61.55)

1011 (80.17)

0.396

(0.329, 0.476)

 < 2.22 × 10–16

0.450

(0.372, 0.545)

4.44 × 10–16

I often choose not to go to the doctor with concerns if I need to see a specialist because I know that it will take my many appointments before I can see the specialist

702 (56.57)

494 (39.24)

2.016

(1.714, 2.373)

 < 2.22 × 10–16

1.923

(1.625, 2.277)

4.13 × 10–14

I usually leave my appointments knowing what the next steps are (i.e. follow-up appointments, medications, etc.)

839 (67.66)

1052 (83.76)

0.406

(0.333, 0.493)

 < 2.22 × 10–16

0.423

(0.345, 0.519)

2.22 × 10–16

I am provided with appropriate support after I receive a diagnosis of any kind (i.e. anything from infections to chronic conditions)

474 (38.23)

920 (73.25)

0.226

(0.190, 0.269)

 < 2.22 × 10–16

0.249

(0.209, 0.297)

 < 2.22 × 10–16

Triggers for a shutdown

The idea of going to see a healthcare professional

498 (40.65)

138 (11.06)

5.506

(4.446, 6.850)

 < 2.22 × 10–16

5.623

(4.497, 7.029)

 < 2.22 × 10–16

Setting up an appointment to see a healthcare professional

470 (38.37)

129 (10.50)

5.305

(4.260, 6.638)

 < 2.22 × 10–16

5.534

(4.397, 6.963)

 < 2.22 × 10–16

Sensory environment of the waiting room

538 (43.95)

134 (10.84)

6.445

(5.196, 8.032)

 < 2.22 × 10–16

6.249

(5.002, 7.808)

 < 2.22 × 10–16

Sensory environment of the office

457 (37.49)

98 (7.96)

6.934

(5.453, 8.885)

 < 2.22 × 10–16

6.659

(5.194, 8.538)

 < 2.22 × 10–16

Seeing a different healthcare professional to whom you expect

467 (38.15)

94 (7.62)

7.475

(5.861, 9.611)

 < 2.22 × 10–16

7.378

(5.734, 9.493)

 < 2.22 × 10–16

Talking to a healthcare professional

504 (41.14)

130 (10.53)

5.937

(4.775, 7.419)

 < 2.22 × 10–16

6.001

(4.777, 7.537)

 < 2.22 × 10–16

Picking up a prescription

204 (16.68)

46 (3.74)

5.145

(3.676, 7.329)

 < 2.22 × 10–16

5.076

(3.579, 7.201)

 < 2.22 × 10–16

Having to see many healthcare professionals before being able to talk to a specialist

510 (41.53)

148 (11.98)

5.213

(4.229, 6.453)

 < 2.22 × 10–16

4.949

(3.987, 6.143)

 < 2.22 × 10–16

After a diagnosis of any kind due to lack of follow-up or support

589 (48.52)

179 (14.55)

5.529

(4.537, 6.758)

 < 2.22 × 10–16

5.405

(4.402, 6.636)

 < 2.22 × 10–16

Triggers for a meltdown

The idea of going to see a healthcare professional

209 (17.06)

55 (4.41)

4.460

(3.257, 6.190)

 < 2.22 × 10–16

4.372

(3.160, 6.050)

 < 2.22 × 10–16

Setting up an appointment to see a healthcare professional

194 (15.84)

49 (3.99)

4.529

(3.255, 6.401)

 < 2.22 × 10–16

4.212

(2.998, 5.919)

2.22 × 10–16

Sensory environment of the waiting room

218 (17.81)

39 (3.16)

6.648

(4.655, 9.703)

 < 2.22 × 10–16

6.178

(4.298, 8.880)

 < 2.22 × 10–16

Sensory environment of the office

160 (13.13)

27 (2.19)

6.738

(4.419, 10.634)

 < 2.22 × 10–16

5.946

(3.874, 9.128)

4.44 × 10–16

Seeing a different healthcare professional to whom you expect

215 (17.57)

38 (3.08)

6.701

(4.676, 9.828)

 < 2.22 × 10–16

6.078

(4.212, 8.771)

 < 2.22 × 10–16

Talking to a healthcare professional

198 (16.16)

42 (3.40)

5.473

(3.861, 7.913)

 < 2.22 × 10–16

5.299

(3.712, 7.565)

 < 2.22 × 10–16

Picking up a prescription

116 (9.49)

20 (1.63)

6.330

(3.884, 10.822)

 < 2.22 × 10–16

5.158

(3.143, 8.466)

1.01 × 10–10

Having to see many healthcare professionals before being able to talk to a specialist

317 (25.81)

84 (6.80)

4.765

(3.674, 6.232)

 < 2.22 × 10–16

4.604

(3.519, 6.025)

 < 2.22 × 10–16

After a diagnosis of any kind due to lack of follow-up or support

394 (32.46)

110 (8.94)

4.889

(3.870, 6.212)

 < 2.22 × 10–16

4.858

(3.810, 6.195)

 < 2.22 × 10–16

  1. OR odds ratio, 95% CI 95% confidence interval, Sig. significance level
  2. aBinomial Logistic Regression adjusting for age, ethnicity, education, and country of residence