Collaborations between Autism CRC's longitudinal research teams have led to closely aligned study design and – in some cases – common data points.
Longitudinal Study of Australian Students (LASA)
With six years of data, this is one of the world's largest and longest studies following autistic children over time. The study explores academic achievement and participation over time, with data collected from home, school and from some of the children and teenagers themselves.
- Followed two cohorts of autistic children, aged 4-5 years (132 participants) and 9-10 years (140 participants) at the time of entry.
- Insights from parents, teachers, school principals, and some students themselves.
- Followed participants annually for six years.
A full list of publications from the LASA study can be found on the the project page.
The following tables show the data availability for the study, with Table 1.1 showing the data availability for each instrument across the six time points, and Table 1.2 showing the participations of parents, principals and teachers. The study protocol for the LASA study is available through BMJ Open.
LASA data table Access the study protocol
Legend for Table 1.1
-
Data available
-
No data available for this time point
Table 1.1: Summary of datasets available per collection timepoints for LASA
Participant type | Dataset | Short name | Participants completing instruments at timepoints | |||||
|---|---|---|---|---|---|---|---|---|
| T1 | T2 | T3 | T4 | T5 | T6 | |||
Parent/Caregiver | Family history survey | FHS | | | | | | |
Participation and Environment Measure – Child & Youth | PEM-CY | | | | | | | |
Social Communication Questionnaire Lifetime | SCQ | | | | | | | |
Children’s Communicative Checklist | CCC-2 | | | | | | | |
Vineland | VABS-II | | | | | | | |
Pragmatic Profile of Everyday Communication | PPEC | | | | | | | |
Developmental Short Sensory Profile Behaviour Checklist | DBC | | | | | | | |
Short Sensory Profile | SSP-2 | | | | | | | |
Family Outcome survey | FOS-R | | | | | | | |
Short Parental Stress Index | PSI-4 | | | | | | | |
Anxiety Scale for Children with Autism Spectrum Disorder | ASC-ASD-P | | | | | | | |
Principal and Teacher | Principal survey | - | | | | | | |
Teacher survey | - | | | | | | | |
Academic Competence Evaluation Scales | ACES | | | | | | | |
Strengths and Difficulties Questionnaire | SDQ | | | | | | | |
Table 1.2: Cohort participation across timepoints
| Cohort | Number of participants | |||||
|---|---|---|---|---|---|---|
| T1 | T2 | T3 | T4 | T5 | T6 | |
Parent | 271 | 217 | 195 | 186 | 170 | 175 |
Principal | 15 | 102 | 87 | | | |
Teacher | 27 | 92 | 83 | 125 | 128 | 97 |
SASLA (Study of Australian School Leavers with Autism)
A comprehensive profile of autistic young people in Australia as compared with a similar aged cohort of non-autistic young people, over a period of 2 years. This study also gathered insights into the role and experiences of parents and carers of autistic young people as they move from school to post-school life.
- Autistic young adults (aged 15-25) with and without intellectual disability.
- Includes non-autistic young adults, parents and carers.
- Followed up at two timepoints after baseline data collection.
A full list of publications from the SASLA study can be found on the project page.
The following tables show the data availability for the study, with Table 2.1 showing the data availability for each participant type for each instrument across the three time points, and Table 2.2 showing the participations of parents, principals and teachers. A longtitudinal profile of the SASLA study is available for download.
The Australian Longitudinal Study of Autistic Adults (ALSAA) contains common data points with SASLA, which are included in Table 4.1, after the ALSAA section.
SASLA data table Download longitudinal profile
Legend for Table 2.1
- A Autistic young person
- NA Control (non-autistic young person)
- AD Autistic young person with intellectual disability
- P/C Parent/carer
- All All participant types
Table 2.1: Summary of datasets available per collection time points for SASLA
Category | Measure/Domain | Short name | Participant types at timepoints for studies | ||
|---|---|---|---|---|---|
| T1 | T2 | T3 | |||
Demographics and personal characteristics | Basic demographics (Age, Sex, Ethnicity, English speaking status) | BD | All | | ANA |
Other demographics (Education, Occupation, Family & living conditions, Income) | OD | ANAADP/C | All | All | |
Autism characteristics | Autism Diagnosis Details | ADD | ANAAD | | |
Autism Diagnostic Report and Clinicians | ADR | ANAAD | | | |
The Autism Quotient – Shortb (Hoekstra et al., 2011) | AQ-Short | All | | All | |
Repetitive Behaviours Questionnaire-2 Adult Version (Barrett et al., 2015) | RBQ-2A | All | ANAAD | All | |
The Glasgow Sensory Questionnaire (Robertson & Simmons, 2012) | GSQ | ANAAD | | P/C | |
The Intolerance of Uncertainty Scale-12 (Carleton, Norton, & Asmundson, 2007) | IUS | ANAP/C | ANAP/C | ANAP/C | |
The Impact of Diagnosis Scale-Revised+ | | | ANA | ||
Terminology and Disclosure of Diagnosis+ | | | ANAP/C | ||
Physical Health | Medical history | All | | | |
Medication profile | All | | | ||
The Patient Health Questionnaire-9 (Kroenke, Spitzer, & Williams, 2001) | PHQ-9 | All | All | All | |
The Composite Autonomic Symptom Score – 31 (Sletten, Suarez, Low, Mandrekar, & Singer, 2012) | COMPASS-31 | All | | All | |
Pittsburgh Sleep Quality Index (Buysse, Reynolds, Monk, Berman, & Kupfer, 1989) | PSQ-31 | All | All | All | |
Flinders Fatigue Scale (Gardisar et al., 2007) | FLI-7 | All | All | All | |
Mental and Emotional Health | DSM-5 Dimensional Anxiety Scales: Generalized Anxiety Disorder-Adult (Craske et al., 2013) | DSM5 GAD-A | All | All | All |
DSM-5-Dimensional Anxiety Scales: Social Anxiety Disorder-Adult+ (Craske et al., 2013) | DSM5 SAD-A | | | All | |
Obsessive-Compulsive Inventory+ | OCI-18 | All | | All | |
Penn State Worry Questionnaire (Meyer et al., 1990). | PSW-16 | ANAP/C | | | |
Hospital Anxiety and Depression Scale (Zigmond et al., 1983) | HAD-14 | ANAAD | ANAAD | ANAAD | |
The Warwick Edinburgh Mental Well-being Scale (Tennant et al., 2007) | WEM-14 | ANAP/C | ANAP/C | ANAP/C | |
The Brief COPE (Carver, 1997) | COP-28 | ANAP/C | | P/C | |
UCLA Loneliness Scale (Russell, 1996) | ULS | ANAP/C | P/C | ANAP/C | |
General Positive Affect (PANAS-X) | GPA-10 | All | | | |
Positive Affect Index (Bengston & Allen, 1993) | PAI-10 | P/C | | P/C | |
The Emotion Regulation Questionnaire (Gross & John, 2003) | ERQ | All | All | All | |
Developmental Behaviour Checklist-Adolescent/Adult version Revised (Mohr, Tonge, Einfeld, & Taffe, 2011) | DBC-A | | | P/C | |
Effortful Control Scale (ATQ, Rothbart) | All | | | ||
Negative Affectivity Scale (ATQ, Rothbart) | All | | | ||
Mindful Attention Awareness Scale (Brown et al., 2003). | MAA-5 | ANAP/C | | | |
Interpersonal Reactivity Index (Davis, 1983). | IRI-21 | ANAP/C | | | |
Levels of Emotional Awareness Scale (Barchard, et al. 2011). | LEA-5 | ANA | | | |
Retrospective Behavioural Inhibition Scale (Gladstone et al., 2005). | RBI-18 | All | | | |
Big-Five Factor Marker – Factor 1 (Goldberg, 1992). | BFF-10 | All | | | |
Sternberg’s Adaptive Behaviour Checklist (Sternberg et al., 1981) | SAB-41 | ANAP/C | | | |
Satisfaction with Love Scale (Neto, 2005)+ | SLS-5 | | | ANAP/C | |
Retrospective Bullying Questionnaire+ | | | ANAAD | ||
Waisman Activities of Daily Living Scale (Maenner et al., 2013) | WAD-17 | P/C | P/C | P/C | |
Networking & Social Life | Social Support Questionnaire-6 (Sarason, Levine, Basham, & Sarason, 1983)% | SSQ-6 | ANAP/C | | ANAP/C |
Social Well-being Scale (Keyes, 1998) | SBS-6 | ANA | | | |
Activities, Participation and Quality of Life | Vocational Index for Adults with Autism (Taylor & Seltzer, 2012) | VIA-10 | ANAAD | ANAAD | ANAAD |
International Physical Activity Scale (Booth, 2000)+ | IPAQ-S | | | All | |
WHO Quality of Life assessment BREF (The WHOQOL Group., 1995) | WHOQOL | ANAAD | ANAAD | All | |
Early intervention service history | EIH | ANAAD | | | |
Caring | Caregiver Activity Survey (McCarron, Gill, Lawlor, & Beagly, 2002) | CAS-ID | P/C | P/C | P/C |
Table 2.2: Cohort participation at baseline
| Cohort | Participants numbers |
|---|---|
Autistic young adults without an intellectual disability | 115 |
Autistic young adults with an intellectual disability | 27 |
Parents of autistic young adults | 117 |
Non-autistic young adults | 218 |
ALSAA (Australian Longitudinal Study of Autistic Adults)
Data from autistic and non-autistic adults aged 25+ years old across two time points. It also collected information from family members and carers. This study describes the health and wellbeing of Australian autistic adults across two time points. Important insights into the experiences of autism in adulthood, including health and health services, employment, diagnosis, quality of life, the wellbeing of carers, activities of daily living, intellectual disability and physical activity.This dataset describes the health and wellbeing of autistic and non‑autistic adults across two time points/ It also collected information from family members and carers. The study provides important insights into the experiences of autism in adulthood, including health and health services, employment, diagnosis, quality of life, the wellbeing of carers, activities of daily living, intellectual disability and physical activity.
- Autistic adults aged 25 and older.
- Includes non-autistic adults, families and carers.
- Two time points over two years.
A full list of publications from the ALSAA study can be found on the the project page.
The following tables show the data availability for the study, with Table 3.1 showing the data availability for each participant type for each instrument across the two time points, and Table 3.2 showing the cohort participation at each time point. The study protocol for the ALSAA study is available through BMJ Open.
ALSAA and SASLA contain common data points with SASLA, which are described in Table 4.1, in the section following Table 3.1 and 3.2.
ALSAA data table Access the study protocol
Legend for Table 3.1
- A Autistic adult
- NA Control (non-autistic adult)
- I Informant answering on behalf of autistic adult
- C Carer or family member
Table 3.1 Summary of datasets available per collection time points for ALSAA
Category | Measure/Domain | Short name | Participant types at timepoints for studies | |
|---|---|---|---|---|
| T1 | T2 | |||
Demographics and personal characteristics | Basic demographics (Age, Sex, Ethnicity, English speaking status) | BD | All | All |
Other demographics (Education, Occupation, Family & living conditions, Income) | OD | All | All | |
Other demographics (Household income) | OD-I | | All | |
Autism characteristics | Autism Diagnosis Details | ADD | ANAI | ANAI |
Autism Diagnostic Report and Clinicians | ADR | | ANAI | |
The Autism Quotient – Shortb (Hoekstra et al., 2011) | AQ-Short | All | All | |
Repetitive Behaviours Questionnaire-2 Adult Version (Barrett et al., 2015) | RBQ-2A | ANAI | ANAI | |
The Glasgow Sensory Questionnaire (Robertson & Simmons, 2012) | GSQ | ANAI | ANAI | |
The Intolerance of Uncertainty Scale-12 (Carleton, Norton, & Asmundson, 2007) | IUS | ANAC | ANA | |
The Impact of Diagnosis Scale-Revised+ | | ANA | ||
Terminology and Disclosure of Diagnosis+ | | ANA | ||
Physical Health | Medical history | All | All | |
Medication profile | ANAI | ANAI | ||
Smoking, alcohol, and illicit drug use | ANAI | ANAI | ||
The Patient Health Questionnaire-15 (Spitzer et al., 1994) | PHQ-15 | ANAC | ANAC | |
The Patient Health Questionnaire-9 (Kroenke, Spitzer, & Williams, 2001) | PHQ-9 | ANAC | ANAC | |
Medical Outcomes Study Short Form Health Survey-12 (Ware, Kosinski, & Keller, 1996) | SF-12 | All | All | |
The Composite Autonomic Symptom Score – 31 (Sletten, Suarez, Low, Mandrekar, & Singer, 2012) | COMPASS-31 | ANA | ANA | |
Pittsburgh Sleep Quality Index (Buysse, Reynolds, Monk, Berman, & Kupfer, 1989) | PSQ-31 | ANA | ANA | |
Flinders Fatigue Scale (Gardisar et al., 2007) | FLI-7 | ANA | ANA | |
Mental and Emotional Health | DSM-5 Dimensional Anxiety Scales: Generalized Anxiety Disorder-Adult (Craske et al., 2013) | DSM5 GAD-A | ANAC | ANAC |
DSM-5-Dimensional Anxiety Scales: Social Anxiety Disorder-Adult+ (Craske et al., 2013) | DSM5 SAD-A | | ANAC | |
Mini-SPIN (social anxiety)+ | | ANAC | ||
Obsessive-Compulsive Inventory+ | OCI-18 | | ANAC | |
The Warwick Edinburgh Mental Well-being Scale (Tennant et al., 2007) | WEM-14 | ANA | ANA | |
The Brief COPE (Carver, 1997) | COP-28 | ANAC | ANAC | |
UCLA Loneliness Scale - Revised (Russell, Peplau & Cutrona, 1980)+ | ULS-20 | | ANA | |
UCLA Loneliness Scale-8 (ULS-8) (Hays & DiMatteo, 1987) | ULS-8 | ANA | ANA | |
Positive Affect Index (Bengston & Allen, 1993) | PAI-10 | C | C | |
The Emotion Regulation Questionnaire (Gross & John, 2003) | ERQ | ANAC | ANAC | |
Developmental Behaviour Checklist-Adolescent/Adult version Revised (Mohr, Tonge, Einfeld, & Taffe, 2011) | DBC-A | I | I | |
Retrospective Behavioural Inhibition Scale (Gladstone et al., 2005). | RBI-18 | | ANA | |
Satisfaction with Love Scale (Neto, 2005)+ | SLS-5 | | ANAC | |
Retrospective Bullying Questionnaire+ | | ANA | ||
Waisman Activities of Daily Living Scale (Maenner et al., 2013) | WAD-17 | ANAI | ANAI | |
Big Five Inventory – Short (Lang et al., 2011)+ | BFI-11 | | All | |
The New General Self-Efficacy Scale (Chen, Gully, & Eden, 2001) | ANA | ANA | ||
Memory Complaint Questionnaire (Crook, Feher, & Larrabee, 1992) | MAC-Q | ANA | ANA | |
Childhood Trauma and Recent Trauma Questionnaire+ | CTQ | | ANA | |
Subjective Happiness Scale (Lyubomirksy, & Lepper, 1999)+ | SHS | | ANAC | |
Interoception Scale+ | ITS | | ANA | |
Connor Davidson Resilience Scale *+ | CD-RISC | | ANA | |
Networking & Social Life | Supports and networksa | All | ANAI | |
Network of Relationships Inventory – Relationship Qualities Version (Furman & Buhrmester, 2009) | ANA | ANA | ||
Social Support Questionnaire-6 (Sarason, Levine, Basham, & Sarason, 1983)% | SSQ-6 | All | All | |
Activities, Participation and Quality of Life | Vocational Index for Adults with Autism (Taylor & Seltzer, 2012) | VIA-10 | ANAI | I |
International Physical Activity Scale (Booth, 2000)+ | IPAQ-S | | ANAI | |
WHO Quality of Life assessment BREF (The WHOQOL Group., 1995) | WHOQOL | ANA | ANA | |
World Health Organisation Disability Assessment Schedule (Luciano et al., 2010) | WHO-DAS II | All | ANAI | |
Special abilities and interestsc | SAI | ANA | ANA | |
Leisure activities participation | LAP | ANA | | |
Leisure Satisfaction Scale (Beard & Ragheb, 1980) | LSS | ANA | | |
Driving and transport | DAT | All | | |
Client Service Receipt Inventory (Chisholm et al., 2000) | CSRI | ANAI | ANAI | |
Health service seeking behaviour | HSS | ANAI | | |
Early intervention service history | EIH | ANAI | | |
Justice system contact | JSC | ANAI | | |
Preventative health screening | PHS | ANAI | ANAI | |
Barriers to Health Checklist – Short Form | BHC | ANA | ANA | |
Caring | Caregiver Activity Survey (McCarron, Gill, Lawlor, & Beagly, 2002) | CAS-ID | C | C |
Zarit Burden Interview (Bedard et al., 2001) | C | C | ||
Preparing | Future planning | | C | |
Table 3.2: Cohort participation at timepoints
| Cohort | T1 | T2 |
|---|---|---|
Autistic adults | 293 | 251 |
Non-autistic adults | 146 | 45 |
Carers or family members | 102 | 40 |
Common Surveys Across ALSAA and SASLA
The ALSAA and SASLA studies include several surveys that are administered in both cohorts, enabling researchers to combine and compare data across different age groups and study populations. The table below provides a summary of the datasets that are common to both studies, supporting integrated analyses and broader insights.
For further details on participant types and timepoints, please refer to the legends for Table 2.1 and Table 3.1.
Table 4: Summary of common datasets available per collection time points for SASLA and ALSAA
Category | Measure/Domain | Short name | Participant types at timepoints for studies | ||||
|---|---|---|---|---|---|---|---|
| SASLA | ALSAA | ||||||
| T1 | T2 | T3 | T1 | T2 | |||
Demographics and personal characteristics | Basic demographics (Age, Sex, Ethnicity, English speaking status) | BD | All | | ANA | All | All |
Other demographics (Education, Occupation, Family & living conditions, Income) | OD | ANAADP/C | All | All | All | All | |
Autism characteristics | Autism Diagnosis Details | ADD | ANAAD | | | ANAI | ANAI |
Autism Diagnostic Report and Clinicians | ADR | ANAAD | | | | ANAI | |
The Autism Quotient – Shortb (Hoekstra et al., 2011) | AQ-Short | All | | All | All | All | |
Repetitive Behaviours Questionnaire-2 Adult Version (Barrett et al., 2015) | RBQ-2A | All | ANAAD | All | ANAI | ANAI | |
The Glasgow Sensory Questionnaire (Robertson & Simmons, 2012) | GSQ | ANAAD | | P/C | ANAI | ANAI | |
The Intolerance of Uncertainty Scale-12 (Carleton, Norton, & Asmundson, 2007) | IUS | ANAP/C | ANAP/C | ANAP/C | ANAC | ANA | |
The Impact of Diagnosis Scale-Revised+ | | | ANA | | ANA | ||
Terminology and Disclosure of Diagnosis+ | | | ANAP/C | | ANA | ||
Physical Health | Medical history | All | | | All | All | |
Medication profile | All | | | ANAI | ANAI | ||
The Patient Health Questionnaire-9 (Kroenke, Spitzer, & Williams, 2001) | PHQ-9 | All | All | All | ANAC | ANAC | |
The Composite Autonomic Symptom Score – 31 (Sletten, Suarez, Low, Mandrekar, & Singer, 2012) | COMPASS-31 | All | | All | ANA | ANA | |
Pittsburgh Sleep Quality Index (Buysse, Reynolds, Monk, Berman, & Kupfer, 1989) | PSQ-31 | All | All | All | ANA | ANA | |
Flinders Fatigue Scale (Gardisar et al., 2007) | FLI-7 | All | All | All | ANA | ANA | |
Mental and Emotional Health | DSM-5 Dimensional Anxiety Scales: Generalized Anxiety Disorder-Adult (Craske et al., 2013) | DSM5 GAD-A | All | All | All | ANAC | ANAC |
DSM-5-Dimensional Anxiety Scales: Social Anxiety Disorder-Adult+ (Craske et al., 2013) | DSM5 SAD-A | | | All | | ANAC | |
Obsessive-Compulsive Inventory+ | OCI-18 | All | | All | | ANAC | |
The Warwick Edinburgh Mental Well-being Scale (Tennant et al., 2007) | WEM-14 | ANAP/C | ANAP/C | ANAP/C | ANA | ANA | |
The Brief COPE (Carver, 1997) | COP-28 | ANAP/C | | P/C | ANAC | ANAC | |
Positive Affect Index (Bengston & Allen, 1993) | PAI-10 | P/C | | P/C | C | C | |
The Emotion Regulation Questionnaire (Gross & John, 2003) | ERQ | All | All | All | ANAC | ANAC | |
Developmental Behaviour Checklist-Adolescent/Adult version Revised (Mohr, Tonge, Einfeld, & Taffe, 2011) | DBC-A | | | P/C | I | I | |
Retrospective Behavioural Inhibition Scale (Gladstone et al., 2005). | RBI-18 | All | | | | ANA | |
Satisfaction with Love Scale (Neto, 2005)+ | SLS-5 | | | ANAP/C | | ANAC | |
Retrospective Bullying Questionnaire+ | | | ANAAD | | ANA | ||
Waisman Activities of Daily Living Scale (Maenner et al., 2013) | WAD-17 | P/C | P/C | P/C | ANAI | ANAI | |
Networking & Social Life | Social Support Questionnaire-6 (Sarason, Levine, Basham, & Sarason, 1983)% | SSQ-6 | ANAP/C | | ANAP/C | All | All |
Activities, Participation and Quality of Life | Vocational Index for Adults with Autism (Taylor & Seltzer, 2012) | VIA-10 | ANAAD | ANAAD | ANAAD | ANAI | I |
International Physical Activity Scale (Booth, 2000)+ | IPAQ-S | | | All | | ANAI | |
WHO Quality of Life assessment BREF (The WHOQOL Group., 1995) | WHOQOL | ANAAD | ANAAD | All | ANA | ANA | |
Early intervention service history | EIH | ANAAD | | | ANAI | | |
Caring | Caregiver Activity Survey (McCarron, Gill, Lawlor, & Beagly, 2002) | CAS-ID | P/C | P/C | P/C | C | C |
Acknowledgements
We gratefully acknowledge participants and communities who have contributed to the Longitudinal Studies datasets.
LASA authors: Jacqueline Roberts, Dawn Adams, Kate Simpson, Jessica Paynter, Marleen Westerveld, Jac den Houting and Kathryn Ambrose.
ALSAA authors: Julian Trollor, Samuel Arnold and Sara Elsie Walker.
SASLA authors: Amanda Richdale, Alexandra Haschek, Lacey Chetcuti and Lauren Lawson.