We are putting together a strategy that sets out how we can help people with autism, aged 18 and over, get the services they need. We d also like to help everyone learn about autism. If you're living with autism, or are a parent or carer of someone with autism, we'd like to ask you about different aspects of your life including; school, finding a job, living arrangements and using local services, and the experiences you've had. You don t have to answer a question if you don t want to, and we won t let anyone else have the information you give us. If you have any questions, or need any help, please contact the Public Health and Wellbeing team at publichealthandwellbeing@westberks.gov.uk This survey is open from 11 September to 10 December 2017. Diagnosis 1. What autism diagnosis do you have? Autism Spectrum Disorder (ASD) Asperger's syndrome I don t have a formal diagnosis, but I believe I am on the autistic spectrum I don t have a formal diagnosis, but I am being assessed 2. How old were you when you were diagnosed? I don t have a formal diagnosis 18 to 25 0 to 4 26 to 50 5 to 10 51 to 65 11 to 17 over 65 3. Do you have another type of disability? If you answered Yes, please tell us what your other disability is.
4. What was your experience of being diagnosed? I don t have a formal diagnosis yet It was easy to get a diagnosis I was given enough information about my diagnosis I had someone to help me understand what my diagnosis meant for me Is there anything else you d like to tell us about your experience of being diagnosed? Information and advice 5. Have you been able to find all the information you need on your diagnosis and the support that you can get? If you answered 'No', please tell us a little about the problems you've had finding the information you need.
6. Where do you get your information from? Parents/carers Other family members Friends Other people with ASD/Asperger s Internet A local charity A local support group West Berkshire Council Other please specify: 7. Do you think it would be helpful to have all the information you might need in one place? If you answered Yes, please tell us a little about what format you would like it in.
Education 8. Which types of school did you attend? You can tick more than one. Special school Mainstream primary Mainstream secondary Resourced unit Special residential school Mainstream residential school Home schooled Other - please specify: Independent school Post 16 special Post 16 mainstream Sixth form College Post 18 college University 9. What was your experience of school life? My teachers understood my autism I had a helper or someone I could go to I was given enough notice if my routine or timetable was changing I had a quiet area I could go to I had things explained in a way that I could easily understand I was bullied I didn t feel supported I didn t enjoy being at school Is there anything else you d like to tell us about your experience of school life?
Employment 10. Are you currently working, including volunteering? Please continue from Q12 Please answer Q11 and then continue from Q16 11. Please tell us why you aren't currently working. I m at school, college or university (full-time or part-time) I m trying to find work I can t work because of my illness or disability I m retired Other please specify: 12. What is your occupation? Manager, director, senior official Professional Administrative and secretarial Skilled trade Caring, leisure and other service occupations Sales and customer service Process, plant and machine operative Other - please specify:
13. What type of work or volunteering are you doing? I work full time for someone else (30 hours or more a week) I work part-time for someone else (less than 30 hours a week) I work for myself (full or part time) I am on a government training programme, for example an Apprenticeship I work as a volunteer full-time (30 hours or more a week) I work as a volunteer part-time (less than 30 hours a week) Other - please specify: 14. Did you have help finding work? Please continue from Q15 15. Who helped you find work? Please continue from Q16 Please continue from Q16 Parents/carers Other family members Friends A local charity A local support group Job centre West Berkshire Council Other please specify:
16. Do you think it s easy to find a job? If you answered 'No', please tell us what makes its difficult to find a job. 17. Please tell us about your working life experience up until now. My employers understand/understood my autism My colleagues understand/understood my autism Things are/were explained in a way I can/could easily understand I have/had a specific person I can/could go to if I need/needed help I have/had a work schedule that gives/gave me a clear routine I am/was given plenty of notice if my schedule is/was changing My surroundings have been/were made comfortable for me I have/had help to prevent/stop me being bullied I am/have been stressed at work Is there anything else you d like to tell us about your experience of working life?
18. Do you think it s easy to get onto training courses e.g. on the job or professional training and community learning? If you answered 'No', please tell us what makes its difficult. Travel 19. How do you travel e.g. to work or to local facilities and services? I drive myself Someone else drives me I use public transport e.g. bus or train I use a taxi I cycle I walk Other please specify:
20. Do you find it easy to travel on your own e.g. to work or local facilities and services? If you answered 'No', please tell us what makes travelling difficult. Local facilities and services 21. Do you think the following facilities and services in West Berkshire are autism friendly (meaning you can use these facilities and services without having sensory or social overload)? Banks Community activities Council offices Health services e.g. dentist and doctors Libraries Museums, theatres and cinemas Parks and open spaces Places to practice your religion
Public transport e.g. buses and trains Schools Shops Sports and leisure facilities If you answered 'No', please tell us what makes these facilities and services not autism friendly. 22. Are there any changes that could be made to these facilities and services to make them more autism friendly? If you answered 'Yes', please tell us what changes you would make.
23. How do you find out about activities and events in your community? TV and radio Newspaper Local magazine Internet Through other people e.g. family and friends Through other autistic people Through local charities and support groups Library GP surgery Other please specify:
Housing 24. What type of housing do you live in? I own my home I rent my home I live with my parents/carers I live in Supported Living, a care home or in a Shared Lives home Other - please specify: 25. Who do you live with? On my own With parents/carers With partner and/or children With other family members With other people, who are not family Other - please specify:
26. Have you ever had any help with finding somewhere to live? from Q27 Not applicable - I've never needed any help or support to find housing from Q28 from Q28 from Q28 27. Who helped you to find housing? Parents/carers Other family members Friends A local charity A local support group West Berkshire Council Other please specify: 28. Do you think it's easy to find somewhere to live? If you answered 'No', please tell us what makes it difficult to find somewhere to live.
29. Do you struggle with any of the following? Managing my bills Doing housework Shopping for food Cooking for myself Communicating with people Getting to know new people Staying safe Thinking about where you live, is there anything else you struggle with?
Health 30. Do you think your health is...? Very good Good Fair Poor Very poor Is there anything else you d like to tell us about your health? 31. Do you struggle with any of the following? Eating healthily Losing weight Being physically active Stopping smoking Drinking less alcohol or stopping altogether
Getting sleep Dealing with stress Managing my long-term health problem Managing my personal hygiene Managing my mental health Thinking about your health, is there anything else you struggle with? 32. What makes it difficult for you to make changes to your health? I don t have enough money I don t like to leave my house because of my autism I have family commitments I m too busy at work I have too many social commitments outside of work My condition makes it difficult
Services aren t autism friendly Other please specify: 33. How do you feel about your local health services? I can access health and social care services provided by West Berkshire Council easily I can access health screening e.g. breast cancer screening easily I can access doctors, hospitals, dentist, opticians and pharmacies easily Is there anything else you d like to tell us about your experience of local health services? Crime 34. Have you had any contact with the Criminal Justice System (CJS) in West Berkshire? This includes the Police, the Youth Offending Service, courts and probation. This could be as a victim, witness or offender. from Q35 from Q38 from Q38
35. How old were you when you had contact with the Criminal Justice System (CJS)? You can tick more than one. Under 18 18 or over 36. Were the CJS staff aware of your autism? 37. Do you think the CJS staff understood your needs and supported you? If you answered 'No', please tell us why you felt misunderstood and unsupported. Autism Alert Card If you find yourself in a situation where you cannot explain your behaviour to people around you or to the emergency services (such as the police), you can show them your Berkshire Autism Alert Card. It is the same size as a bank card. If you would like an Autism Alert Card, please contact Autism Berkshire on 01189 594 594 for more details. There is also information on their website - http://www.autismberkshire.org.uk/berkshire-autismalert-card/ 38. Do you know there is an Autism Alert Card available for free? from Q39 from Q42 from Q42 39. Do you carry an Autism Alert Card? from Q40 from Q42 from Q42
40. Have you used it? from Q41 from Q42 from Q42 41. Was it useful? If you answered Yes or 'No', please tell us why you the Autism Alert card was or wasn t useful. 42. Do you have any other comments?
About You (Optional) These questions are optional. Any information provided here will be kept confidential. 43. Gender: Female Male Transgender Female Transgender Male Gender variant/non conforming Prefer not to say 44. How old are you? 18-24 65-74 25-34 75-84 35-44 85 and over 45-54 Prefer not to say 55-64 45. What is your ethnicity? Asian or Asian British Black or Black British White or White British Other - please specify: Mixed Gypsy or Irish Traveller Prefer not to say 46. What town/village do you live in? 47. We may need to contact you about your responses in this questionnaire and to see if there is anything we can do to help you. Are you happy for us to contact you? If yes, please tell us your details. Name Email address Phone number
Thank you for taking the time to complete our survey. Please return your completed feedback form by 10 December 2017 to: Rachel Johnson, Senior Programme Officer, Public Health and Wellbeing, Council Offices, West Street House, West Street, Newbury, Berkshire, RG14 1BZ Or email it to: rachel.johnson@westberks.gov.uk