Views about primary care health checks for autistic adults: UK survey findings

David Mason; Helen Taylor; Barry Ingham; Tracy Finch; Colin Wilson; Clare Scarlett; Anna Urbanowicz; Christina Nicolaidis; Nicholas Lennox; Sebastian Moss; Carole Buckley; Sally-Ann Cooper; Malcom Osborne; Deborah Garland; Dora Raymaker; Jeremy R Parr

doi:10.3399/BJGPO.2022.0067

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Figure 1. Representation of the categories for (A) 'What would make a health check easier to access?' and (B) 'What would make a health check more challenging to access?'

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Table 1. Participant characteristics

Characteristic	Frequency, n (%)
Total participants	458
Age, years
18–25	47 (10.3)
26–40	148 (32.3)
41–60	202 (44.1)
≥61	61 (13.3)
Sex
Male	183 (40.0)
Female	244 (53.3)
Did not report as male or female^a	14 (3.0)
No response	17 (3.7%)
Qualifications achieved^b
Postgraduate degree	74 (16.2)
Bachelor’s degree	163 (35.6)
Diploma of higher education	59 (12.9)
Certificate of higher education	49 (10.7)
A-level or equivalent	245 (53.5)
General Certificate of Secondary Education (GCSE)	341 (74.5)
Basic skills	87 (19.0)
No formal qualifications	39 (8.5)
Other	76 (16.6)
Employment status^b
Employed without support	142 (31.0)
Employed with support	6 (1.3)
Self-employed	36 (7.9)
Volunteer	58 (12.7)
Unemployed	194 (42.4)
Retired	25 (5.5)
Other	78 (17.0)
Autism diagnosis
Formal diagnosis	392 (85.6)
Suspected or unsure or awaiting assessment	66 (14.4)
Mean age at diagnosis (SD; range)	37.7 (15.6; 2.0–68.0)
SRS score by severity category^c
Normal	9 (2.3)
Mild	38 (9.6)
Moderate	121 (30.6)
Severe	227 (57.5)
No response	63 (13.8%)
Mean (SD)	116 (26)
Intellectual disability^d
Formal diagnosis	28 (6.1)
Suspected	33 (7.2)
Type of secondary school attended^b
Mainstream school	424 (92.6)
Specialist schooling (at any time)	54 (11.8)
Statement of special educational needs
Yes	60 (13.1)
No	362 (79.0)
Don’t know	32 (7.0)
No response	4 (0.9)
Additional help with learning received at mainstream school^b
No help	349 (76.2)
Classroom support	35 (7.6)
One-to-one instruction	22 (4.8)
Extra time for exams	53 (11.6)
Special equipment	13 (2.8)
Quiet room	28 (6.1)
Support person	36 (7.9)
Support received currently^b
Home	135 (29.5)
Employment	45 (9.8)
Health	117 (25.5)
Finance	120 (26.2)
Social	67 (14.6)
Lifelong learning	56 (12.2)
Community	86 (18.8)
Organisation	70 (15.3)
Do not receive support	205 (44.8)
Support needed currently^b
Home	120 (26.2)
Employment	190 (41.5)
Health	161 (35.2)
Finance	202 (44.1)
Social	247 (53.9)
Lifelong learning	222 (48.5)
Community	136 (29.7)
Organisation	140 (30.6)
Do not want to receive support	61 (13.3)
Completion of survey
On own	371 (81.0)
With help from somebody else	77 (16.8)
No response	10 (2.2)

^aNot included in analyses of sex comparison; data included in all other analyses. ^bResponders could tick more than one option, so percentages add up to more than 100%. ^cThe Social Responsiveness Scale (SRS) scores are reported under the categories given by the SRS authors; however, the authors are aware that some autistic people may dislike this terminology and view it as pathologising. ^dResponders were asked to tick the relevant box if they had been diagnosed with or suspected they had an intellectual disability.

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Table 2. Comparison of survey responders and non-responders on age group, sex, and preferred contact method

Variable	Responder,n (%)	Non-responder,n (%)	χ²,(P value)	Effect size,Cramer’s V
Age, years
18–25	47 (10.3)	78 (14.4)	16.35 (0.001)	0.128
26–40	148 (32.3)	211 (38.9)
41–60	202 (44.1)	214 (39.4)
≥61	61 (13.3)^a	40 (7.4)^a
Sex
Male	183 (40.0)	247 (49.1)	6.15 (0.046)	0.081
Female	244 (53.3)	246 (48.9)
Did not report as male or female^b	14 (3.0)	10 (2.0)
Preferred contact method
Post	111 (24.3)	93 (17.3)	7.35 (0.007)	0.086
Email	346 (75.7)	444 (82.7)

^aIndicates significant differences, based on χ² residuals.^bNot included in analyses of sex comparison; data included in all other analyses

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Table 3. Proportion of responses to quantitative survey questions about important aspects of the health check from autistic adults, with sex and age effects

	Yesn (%)	Non (%)	Don’t known (%)	No responsen (%)	Sex effectsCramer’s V(P value)	Age effectsCramer’s V(P value)	Intellectual disability effects Crammer’s V(P value)
Do you think that regular health checks should be provided for autistic adults?^a	336 (73.4)	23 (5.0)	55 (12.0)	44 (9.6)	0.06 (.557)	0.21 (0.009)*	0.13 (0.033)*
18–25 years	33 (94.3)	0 (0.0)	2 (5.7)
26–40 years	104 (83.2)	9 (7.2)	12 (9.6)
41–60 years	143 (78.6)	6 (3.3)	33 (18.1)
≥61 years	43 (78.2)	7 (12.7)	5 (9.1)
Would you be happy to provide information about your health needs before the health check?	398 (86.9)	7 (1.5)	0 (0)	53 (11.6)	0.02 (0.689)	0.04 (0.877)	0.01 (0.850)
Would you be happy to provide information about any reasonable adjustments you’d like before the health check?	395 (86.2)	9 (2.0)	0 (0)	54 (11.8)	0.01 (0.796)	0.12 (0.147)	0.01 (0.916)
Importance ratings for features of a health check for autistic adults:	Not important n (%)	Somewhat important n (%)	Very important n (%)	No response n (%)
All staff receiving training about autism	2 (0.4)	39 (8.5)	365 (79.7)	52 (11.4)	0.15 (0.011)*	0.12 (0.506)	0.03 (0.819)
Males	2 (1.3)	23 (14.5)	134 (84.3)
Females	0 (0.0)	15 (6.8)	206 (93.2)
Training about health checks for autistic adults	9 (2.0)	73 (15.9)	324 (70.7)	52 (11.4)	0.09 (0.245)	0.18 (0.050)	0.06 (0.520)
An online health check for autistic adults	72 (15.7)	144 (31.4)	182 (39.7)	60 (13.1)	0.08 (0.275)	0.15 (0.170)	0.02 (0.908)
A paper version of the health check	59 (12.9)	149 (32.5)	191 (41.7)	59 (12.9)	0.06 (0.489)	0.15 (0.200)	0.08 (0.284)
Having adequate time for discussions	3 (0.7)	49 (10.7)	353 (77.1)	53 (11.6)	0.11 (0.100)	0.18 (0.056)	0.07 (0.341)

Statistically significant differences are marked in bold and with asterisk.

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Table 4. Proportion of responses to quantitative survey questions regarding the health check

	Yes,n (%)	Sex effects,Cramer’s V (P value)	Age effects,Cramer’s V (P value)	Intellectual disability effects Crammer’s V (P value)
Who should a health check be for?		0.04 (0.880)	0.23 (0.030)*	0.12 (0.173)
All autistic adults	311 (67.9)
Only autistic adults without ID	9 (2.0)
Only autistic adults with ID	14 (3.1)
Don’t know or unsure	39 (8.5)
Missing	85 (18.6)
At what age should health checks be provided?		0.11 (0.683)	0.27 (0.050)	0.15 (0.147)
From childhood	259 (56.6)
From teenage (≥14 years)	49 (10.7)
From early adulthood (≥18 years)	55 (12.0)
From middle age (≥40 years)	12 (2.6)
From older age (≥50 years)	12 (2.6)
All	11 (2.4)
Missing	60 (13.1)
How often should an autism-specific health check be carried out?		0.12 (0.214)	0.21 (0.134)	0.10 (0.593)
Annually	281 (61.4)
Every 2–3 years	59 (12.9)
Every 4–5 years	16 (3.5)
Other	53 (11.6)
Multiple selections	5 (1.1)
How long would you expect an autism-specific health check to last?		0.03 (0.971)	0.15 (0.518)	0.06 (0.705)
<15 minutes	29 (6.3)
15–30 minutes	232 (50.7)
31–45 minutes	92 (20.1)
>45 minutes	45 (9.8)
Missing	60 (13.1)
How would you like to be told about an autism-specific health check?		0.501	0.20 (0.422)	0.14 (0.135)
By letter	250 (54.6)
By text	16 (3.5)
By phone	5 (1.1)
By email	103 (22.5)
I would not want to be told in advance	4 (0.9)
Other	29 (6.3)
Missing	51 (11.1)

ID = Intellectual disabilities. Statistically significant results are marked in bold with asterisk.

Supplementary Data

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