Table 4.
Recommended features for autistic adult post-diagnosis support
| Answer | Autistic adult (N = 344) | Carer (N = 64) | Professional (N = 139) | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | No, but it was needed | No and it was not needed | Do not know | Yes | No, but it was needed | No and it was not needed | Do not know | Standard routine practice | Not standard practice, but often considered | Rarely considered | Never considered | Do not know | |
| Written recommendations for care and follow-up for non-medical problems | 63 (18.3) | 182 (52.9) | 73 (21.2) | 73 (21.2) | 22 (34.4) | 35 (54.7) | 3 (4.7) | 4 (6.3) | 72 (51.8) | 26 (18.7) | 12 (8.6) | 4 (2.9) | 25 (18.0) |
| Written recommendations for health care | 51 (14.8) | 175 (50.9) | 94 (27.3) | 94 (27.3) | 8 (12.5) | 37 (57.8) | 13 (20.3) | 6 (9.4) | 47 (33.8) | 44 (31.6) | 17 (12.2) | 3 (2.2) | 28 (20.1) |
| ‘Health passport’ to carry important information about the adult needs and care | 5 (1.5) | 205 (59.6) | 109 (31.7) | 109 (31.7) | 5 (7.8) | 44 (68.8) | 10 (15.6) | 5 (7.8) | 10 (7.2) | 22 (15.8) | 33 (23.7) | 39 (28.1) | 35 (25.2) |
| Referral for specialist care for health or medical problems | 40 (11.6) | 171 (49.7) | 109 (31.7) | 109 (31.7) | 20 (31.3) | 32 (50.0) | 10 (15.6) | 2 (3.1) | 57 (41.0) | 41 (29.5) | 16 (11.5) | 3 (2.2) | 22 (15.8) |
| Written recommendations for how to manage a crisis | N/A | 5 (7.8) | 39 (60.9) | 13 (20.3) | 7 (10.9) | 36 (25.9) | 37 (26.6) | 28 (20.1) | 4 (2.9) | 34 (24.5) | |||
| Written recommendations for managing risks | N/A | 3 (4.7) | 31 (48.4) | 18 (28.1) | 12 (18.75) | 41 (29.5) | 37 (26.6) | 21 (15.1) | 4 (2.9) | 36 (25.9) | |||
Values expressed as number of responders and frequencies (in parenthesis). N/A = Question was not presented to the respondent group. The questions were the following: autistic adult = After you got the autism spectrum diagnosis, which of the following things happened?; Carer = After the adult got the autism spectrum diagnosis, which of the following things happened?; Professional = Thinking of the adult diagnostic service for autism spectrum that you know best, how often are the following factors considered as parts of the post-diagnostic activities for autistic adults?