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Autistic Traits (AUTQ)
The Autistic Traits questionnaire is an additional assessment among adult Lifelines participants.
The digital questionnaire was developed at the initiative of the Autism Research Center of Cambridge University (UK), in collaboration with the Sarr (Parnassia group) in Rotterdam (NL).
The questionnaire consists of the 10-item adult version of the Autism Spectrum Quotient, plus some additional questions about participants' experience with informal care in general, and informal care of autism spectrum disorder (ASD) patients in particular.
Protocol & response
The digital questionnaire was sent out between september and december 2019.
~110,000 adult Lifelines participants received the questionnaire, of which ~38,000 participants (35%) responded.
Variables
The questionnaire consisted mainly of the Autism Spectrum Quotient.
In addition, non-binary gender was assessed.
The following additional questions were asked about autism spectrum disorder:
| Questions English | Questions Dutch | Variable | Assessment | Age |
| Are you diagnosed with autism? | Is bij u autisme vastgesteld? | AUTISME11 | AUTQ | 18+ |
| In what year where you diagnosed with autism? | In welk jaar is autisme bij u vastgesteld? | AUTISME12 | AUTQ | 18+ |
| Do you have a biological first-degree relative who is diagnosed with autism? | Hebt u eerstegraads bloedverwanten (kinderen, ouders of broers/zussen) bij wie autisme is vastgesteld? | AUTISME13A-E | AUTQ | 18+ |
Furthermore, some questions were asked about informal care, in addition to 2 basic informal care questions:
| Questions English | Questions Dutch | Variable | Assessment | Age |
| Since when do you give informal care to your partner / father / mother / father-in-law / mother-in-law /son / daughter / son-in-law / daughter-in-law / brother / sister / friend/acquaintance / neighbour / someone else? (maand/jaar)? (month/year) | Vanaf wanneer geeft u mantelzorg aan uw partner / vader / moeder / schoonvader / schoonmoeder / zoon / dochter / schoonzoon / schoondochter / broer / zus / vriend/kennis / buurman/buurvrouw / iemand anders? (maand/jaar) | INFCARE3A1/B1 | AUTQ | 18+ |
| Can you indicate with a number between '0 to 100' how hard you find it to give informal care to your partner / father / …? | Kunt u aangeven met een getal tussen ’0 tot 100’ hoe zwaar u het vindt om mantelzorg aan uw partner / vader / … te geven | INFCARE5A-N | AUTQ | 18+ |
| Was there a period in which you could not do your normal tasks (i.e. at work, at school, at home) due to the informal care you gave to your partner / father / …? | Hebt u een periode niet uw gebruikelijke taken (bijv. werk, school, huishouden) kunnen doen doordat u voor uw partner / vader / … zorgde? | AUTISME14A-N | AUTQ | 18+ |
| How much time do you need on average to care for your partner / father / …? | Hoeveel tijd hebt u gemiddeld nodig om voor uw partner / vader / … te zorgen? | AUTISME15A-N | AUTQ | 18+ |
| What is the cause of the need for help of your partner / father / …? | Wat is de oorzaak van de hulpbehoefte van uw partner / vader / … ? | |||
| (Beginning) dementia/memory problems | (Beginnende) dementie/geheugenproblemen | INFCARE14A1-A14 | AUTQ | 18+ |
| Mental problems | Psychische problemen | INFCARE14B1-B14 | AUTQ | 18+ |
| Physical problems | Lichamelijke problemen | INFCARE14C1-C14 | AUTQ | 18+ |
| Mental disability | Verstandelijke handicap | INFCARE14D1-D14 | AUTQ | 18+ |
| Behavioural problems | Gedragsproblemen | INFCARE14E1-E14 | AUTQ | 18+ |
| Other | Anders | INFCARE14F1-F14 | AUTQ | 18+ |
| What diseases and/or disorders caused the need for help of your partner / father / …? | Door welke ziekten en/of aandoeningen is de hulpbehoefte bij uw partner / vader / … veroorzaakt? | INFCARE15A1-A14 | AUTQ | 18+ |
| Diabetes | Suikerziekte | INFCARE15A1-A14 | AUTQ | 18+ |
| (Effects of) a stroke, cerebral hemorrhage, cerebral infarction, TIA | (Gevolgen van) beroerte, hersenbloeding, herseninfarct of TIA | INFCARE15A1-A14 | AUTQ | 18+ |
| Heart failure | Hartfalen | INFCARE15A1-A14 | AUTQ | 18+ |
| Cancer (malignancy) | Een vorm van kanker (kwaadaardige aandoening) | INFCARE15A1-A14 | AUTQ | 18+ |
| Asthma, chronic bronchitis, lung emphysema, COPD | Astma, chronische bronchitis, longemfyseem of CARA/COPD | INFCARE15A1-A14 | AUTQ | 18+ |
| Depression | Depressie | INFCARE15A1-A14 | AUTQ | 18+ |
| Anxiety or panic disorder | Angst-/paniekstoornis | INFCARE15A1-A14 | AUTQ | 18+ |
| Dementia | Dementie | INFCARE15A1-A14 | AUTQ | 18+ |
| Kidney disease | Nierziekte | INFCARE15A1-A14 | AUTQ | 18+ |
| Autism/Autism spectrum disorder | Autisme/autisme spectrum stoornis | INFCARE15A1-A14 | AUTQ | 18+ |
| Rheumatism/joint problems | Reuma/gewrichtsklachten | INFCARE15A1-A14 | AUTQ | 18+ |
| Other | Anders | INFCARE15A1-A14 | AUTQ | 18+ |
