The microsegmentation of the autism spectrum: research project

Annex: The Scottish Autism Survey

The Scottish Autism Questionnaire – Participant Information

What are the key objectives of this research?

The purpose of this research is to collect information about the lives of individuals with Autism Spectrum Disorders ( ASD) or those who care for individuals with ASD. Of most interest are the economic impact that the condition has on such individuals, the services that need to be provided and the extent to which different features of ASD have different implications for costs and service needs.

Who should complete the questionnaire?

We would like anyone currently living in Scotland who has an ASD (whether they have a diagnosis of autism, Asperger’s Syndrome, atypical autism, PDD-NOS or any other Autism Spectrum Disorder) or who cares for an individual with ASD to complete the questionnaire. The questionnaire may also be completed by a professional on behalf of an individual with ASD.

We are interested in gathering information about individuals of all ages, from the very young to older adults with ASD.

How long will the questionnaire take to complete?

The questionnaire should take no longer than 15 minutes to complete.

What will we do with the information collected?

Once collected, the data will be analysed and will be included in a report to the Scottish Government, which has funded this project as part of the Scottish Strategy for Autism. It may also be included in publications regarding the lives of those with an ASD in Scotland. The information is being collected anonymously – unless you volunteer to give us your contact details because you are willing for us to get in touch with you for follow up. At no point will specific individuals be identified in any report or publication. Any information you provide will be stored securely and will only be made accessible to the principal investigators.

If at any stage you wish to withdraw from the research, or retract any information which you have provided us with, you are free to do so at any point. However, it should be noted that the option to withdraw information will expire one month after you complete the questionnaire as the data will then have been processed.

If you have any questions please contact our Research Assistant, Michael Connolly:
Email: scottishautismquestionnaire@gmail.com
Phone: 07437 404303.

With thanks

Professor Tommy MacKay

Before proceeding, please read the items listed below and tick below to confirm that you consent to taking part in the research

• I confirm that I understand the purpose of the research and what is being asked of me
• I understand that my participation is voluntary and that I am free to withdraw from the project at any time without having to give reason and without consequence
• I understand that any information recorded in the investigation will remain confidential.

I am ready to take part and consent to taking part in the investigation ⃝

In what capacity are you completing this questionnaire?

If you are an individual with ASD and also a parent or carer of someone with ASD, please complete a separate questionnaire for yourself and for the individual/s of whom you are parent/carer. Similarly if you care for more than one individual with ASD please complete a separate questionnaire for each individual.

An individual with ASD   ⃝

A parent or family carer of someone with ASD   ⃝

A carer for someone with ASD (not a family member)   ⃝

Other (please specify)   ⃝

Personal Details Of The Individual With ASD

Age (in completed years)

Is the individual with ASD:

Male   ⃝

Female   ⃝

Ethnic group:

White   ⃝

Mixed/Multiple ethnic groups   ⃝

Asian/Asian Scottish or Asian British   ⃝

African   ⃝

Caribbean or Black   ⃝

Other (please specify)

Please enter the full home postcode of the individual with ASD

Is the individual currently in a long-term stable relationship of over 2 years duration?

(Please complete only for individuals age 16 and over who have left school)

Yes   ⃝

No   ⃝

Can the individual travel independently by public transport or their own car?

(Please complete only for individuals age 16 and over who have left school)

Yes   ⃝

No   ⃝

Diagnosis Of ASD

Please tell us the specific diagnosis

Autism/Childhood Autism/Autistic Disorder   ⃝

Asperger's Syndrome/Asperger's Disorder   ⃝

High Functioning Autism ( HFA)   ⃝

ASD/Autism Spectrum Disorder/Autistic Spectrum Disorder   ⃝

Atypical Autism/ PDD-NOS   ⃝

Other ASD Diagnosis (please specify)

Other Diagnosed Conditions

Has the individual received any other diagnoses? (Please tick all that apply)

ADHD (Attention Deficit Hyperactivity Disorder)   ⃝

OCD (Obsessive Compulsive Disorder)   ⃝

Epilepsy   ⃝

Fragile X   ⃝

Tuberous Sclerosis   ⃝

Down Syndrome   ⃝

Tourette Syndrome   ⃝

Schizophrenia   ⃝

Bipolar Disorder   ⃝

Depression   ⃝

Anxiety Disorder   ⃝

Learning Disability/Intellectual Disability (mild/moderate/severe/profound); Learning   ⃝
Difficulties (moderate/severe/profound or complex). Please specify.

Challenging Behaviour

Other Diagnosis (Please specify)

Undiagnosed Conditions

Do you believe there should have been diagnosis for any of the conditions mentioned on the previous page?

No   ⃝

Yes   ⃝

If yes please, specify below the diagnoses you believe should have been given and the reasons why

Educational History

Please tick all types of educational establishment attended, now or in the past

	Preschool/Nursery	Primary	Secondary
Mainstream School	⃝	⃝	⃝
Special Unit/Resource in Mainstream School	⃝	⃝	⃝
Special Day School (General)	⃝	⃝	⃝
Special Day School for ASD	⃝	⃝	⃝
Special Residential School (General) - 38 weeks	⃝	⃝	⃝
Special Residential School (General) - 52 weeks	⃝	⃝	⃝
Special Residential School for ASD - 38 weeks	⃝	⃝	⃝
Special Residential School for ASD - 52 weeks	⃝	⃝	⃝
Other (Please specify)
Other (Please specify)

After leaving school (Please tick all types of educational establishment attended, now or in the past)

None   ⃝

Further education college   ⃝

University   ⃝

Other (Please specify)   ⃝

Highest level of educational qualification achieved

Access 1 or 2/National 1 or 2   ⃝

Access 3 or Standard Grade (Foundation)/National 3   ⃝

Standard Grade (General)/Intermediate 1/ National 4   ⃝

Standard Grade (Credit)/Intermediate 2/National 5   ⃝

Highers/Certificate of Sixth Year Studies/Advanced Highers   ⃝

Higher National or Higher Education Certificate or Diploma   ⃝

Bachelors/Masters Degree   ⃝

Bachelors/Masters Degree with Honours   ⃝

Masters Degree (post-graduate)   ⃝

Doctoral Degree   ⃝

Other (please specify)   ⃝

Has the individual with ASD ever completed an intelligence test?

No   ⃝

Yes   ⃝

If yes, and you have reports detailing the findings, please specify the age of the individual at the time of the test, the name of test completed, and the results of the test (if known). If more than one intelligence test has been completed, include the details of all of these in the space below.

Examples of common intelligence tests include: Wechsler tests ( WISC, WPPSI, WAIS, WASI), Stanford-Binet, Raven's Matrices, British Ability Scales ( BAS), Bailey Scales.

Living Accommodation

Where is the individual with ASD currently living (please tick all that apply)

In a private household with parents or relatives   ⃝

In a private household with friends/flatmates   ⃝

In a private household with a partner   ⃝

In a private household alone   ⃝

In a B&B/hotel   ⃝

In a hostel   ⃝

In formal foster care   ⃝

In supported living accomodation   ⃝

In residential school   ⃝

In residential care   ⃝

In prison/young offenders' institution/secure unit   ⃝

Other (please specify)   ⃝

Employment Status

Please complete only for individuals age 16 and over who have left school

What is the current employment status of the individual with ASD? (please tick all that apply)

Employment (paid, including apprenticeship/internship or other training)   ⃝

Employment (unpaid, including apprenticeship/internship, other training or voluntary work)   ⃝

Supported employment   ⃝

Unemployed - but available to work   ⃝

Unemployed - and not available to work   ⃝

Retired/pensioned – and not in employment   ⃝

Housewife/husband - and not in employment   ⃝

Full time student - and not in employment   ⃝

Other (please specify)   ⃝

If employed (paid, including supported employment), how many hours per week does the individual with ASD work in paid employment?

If employed (unpaid), how many hours per week does the individual with ASD work in unpaid employment?

Educational Services In The Last 6 Months

Please complete only for individuals who have not left education.

Please tick all those attended in the last 6 months

None   ⃝

Mainstream school   ⃝

Further education college   ⃝

University   ⃝

Special Unit/Resource in mainstream school   ⃝

Special day school (general)   ⃝

Special day school for ASD   ⃝

Special residential school (general) - 38 weeks   ⃝

Special residential school (general) - 52 weeks   ⃝

Special residential school for ASD - 38 weeks   ⃝

Special residential school for ASD - 52 weeks   ⃝

Home education (as an alternative to school)   ⃝

Other (please specify)   ⃝

Which professionals working at a school, college or university has the individual with ASD seen in the last 6 months?

None   ⃝

Educational psychologist   ⃝

School family worker/ ESW   ⃝

Classroom assistant   ⃝

Specialist teacher   ⃝

Speech and language therapist (at school/college/university)   ⃝

Occupational therapist (at school/college/university)   ⃝

Physiotherapist (at school/college/university)   ⃝

Disability service advisor (at college/university)   ⃝

Other (please specify the type of service)   ⃝

Tuition/Tutorial Support

Has the individual with ASD received any type of tuition/tutorial support in the last 6 months?

No   ⃝

Yes   ⃝

If yes, what type of tuition/tutorial support has the individual with ASD received in the last 6 months? If the carer or individual paid for any of these services direct (whether with personal funds or supported by a benefit or allowance) please indicate the cost if known.

	Hours per week	Paid for direct by carer/ individual (Yes/No)	If yes, how much did it cost
Individual tuition at home
Individual tuition elsewhere (e.g. school/college/university)
Tuition in a small group (e.g. school/college/university)
Other (please specify)

Has the individual with ASD been excluded from school (or other educational establishment) in the last 6 months?

No   ⃝

Yes   ⃝

If the answer to the previous question was yes, please specify the number of times the individual has been excluded and the length of time they were excluded on each occasion

Health And Social Care Service Provision

Has the individual with ASD received any residential respite care services in the last 6 months?

No   ⃝

Yes   ⃝

If yes, please provide information on all that apply

Number of days spent in residential respite care

Residential care-home for children/adolescents

Residential care-home for adults

Foster care

Other (please state the type of facility)

Has the individual with ASD received any inpatient hospital care in the last 6 months?

No   ⃝

Yes   ⃝

If the answer to the previous question was yes, please provide information on all that apply

Number of days attended in the last 6 months

Psychiatric hospital

Psychiatric ward in a general hospital

General medical ward

Hospital care in prison/ secure/semi-secure unit

Other (please specify)

Has the individual with ASD received any outpatient hospital care in the last 6 months?

No   ⃝

Yes   ⃝

If the answer to the previous question was yes, please provide information on all that apply

	Number of times services were used in the last 6 months
Psychiatric outpatient visit
A & E
Other hospital out-patient visit (excluding A & E, please specify)

Please specify whether the individual with ASD has received any of the following forms of support in the last 6 months by completing the relevant sections of the table below. Please do not include services received in school/college/university or in a residential facility where the individual lives. If the carer or individual paid for any of these services direct (whether with personal funds or supported by benefit or allowance) please indicate the cost if known.

	Visits in the last 6 months	Average length of visit (if known)	Paid for direct by carer or individual (Yes/No)	If yes, how much did it cost?
Psychiatrist
Psychologist
Individual counselling/therapy
Group counselling/therapy
GP
Community learning disability nurse
Community nurse (other services)
Other community learning disability team member
	Visits in the last 6 months	Average length of visit (if known)	Paid for direct by carer or individual (Yes/No)	If yes, how much did it cost?
Community challenging behaviour team member
Child development centre/community paediatrics
Occupational therapist
Speech therapist
Physiotherapist
Social worker
Home help/home care worker
Outreach worker/family support
Private tuition
Befriender
	Visits in the last 6 months	Average length of visit (if known)	Paid for direct by carer or individual (Yes/No)	If yes, how much did it cost?
Day care centre
Social club
After-school club
Play-schemes
Sheltered workshop
Individual placement and support
Holiday schemes
Baby-sitter
Other (please specify type)

If none of the above has been used in the last 6 months, please tick here and continue to the next question

None - continue to next question

Parent/Family/Carer Impact

Please complete only if you are a parent, family member or person caring for the individual with ASD

How would you rate the impact on your own life and that of your family of caring for the individual with ASD?

	No impact	Little impact	Moderate impact	Major impact
My ability to be in employment, training or education	⃝	⃝	⃝	⃝
The quality of my relationship with a partner or spouse	⃝	⃝	⃝	⃝
My ability to pursue social and leisure activities	⃝	⃝	⃝	⃝
The impact on my mental health	⃝	⃝	⃝	⃝
The impact on my physical health	⃝	⃝	⃝	⃝
The impact on other family members	⃝	⃝	⃝	⃝

If the answer to the previous question was ‘moderate impact’ or ‘major impact’, please tell us more about how these aspects of your life have been influenced by caring for someone with ASD.

Please complete only if you are a parent, family member or person caring for the individual with ASD

What is your own employment status? (please tick all that apply)

Employment (paid, including apprenticeship/internship or other training)  ⃝

Employment (unpaid, including apprenticeship/internship, other training or voluntary work)  ⃝

Supported employment  ⃝

Unemployed - but available to work  ⃝

Unemployed - and not available to work  ⃝

Retired/pensioned – and not in employment  ⃝

Housewife/husband - and not in employment  ⃝

Full time student - and not in employment  ⃝

Other (please specify)  ⃝

Please complete only if you are a parent, family member or person caring for the individual with ASD.

If employed (paid), how many hours per week do you work in paid employment?

Please complete only if you are a parent, family member or person caring for the individual with ASD.

If employed (unpaid), how many hours per week do you work in unpaid employment?

Please complete only if you are a parent, family member or person caring for the individual with ASD.

If employed/full-time student, did you have any absences from work/place of study over the last 6 months as a result of your caring for the individual with ASD?

No   ⃝

Yes   ⃝

(If yes, please specify how many times in the last 6 months)

Please complete only if you are a parent, family member or person caring for the individual with ASD.

Have you (the carer) used any health or social care services over the last 6 months as a result of your caring for the individual with ASD? (For example, additional visits to the GP, family planning, social services, psychiatric services, marriage guidance, counselling, self-help groups, advice lines)

No   ⃝

Yes   ⃝

If yes, specify the type of health or social care service, how many times you used it over the last 6 months, and how long was the average appointment/contact

Contact for further information

We will contact some participants for further information. If you are willing to be one of them, please select the method by which you would like to be contacted below and provide us with the relevant details:

By phone at this telephone number:

By email at this address:

By post at this address:

Additional comments

If you wish to make any further comments please do so here.