Cause & Affect - Autism Needs Analysis Questionnaire

Cause & Affect’s Vision it to uplift those who dedicate their lives to uplifting those in need. Working with various NGO’s we have come into contact with schools, organisations and families who seem to have many questions around autism and how we can help improve the status quo for families. The questionnaire below has been drawn up in consultation with parents and professional input, the purpose being to gather information around the needs of the population living with or working with people with Autism – particularly with regard to education.

The information provided in the questionnaire will give us the insight we need to run a series of interactive workshops planned for April 2010 which will address your concerns and needs. The intention is to host a 1 or 2-day interactive workshop series where people involved in any way with Autism may meet, have guided conversations around specific topics and engage in open discussions around those topics.

The aim of the interaction is to improve services for children and adults with autism in Johannesburg (and Pretoria) through sharing of information and uncovering of examples of good practice that are having positive effects on the lives of people with Autism. It is intended to be a very practical time where every delegate is able to share ideas, debate issues and leave the workshop with tools that will be immediately effective in addressing day to day needs.

We are not affiliated to any Association or School. The workshop aims to engage with all service providers with a focus on improving the situation for any Autistic person, their family, their school or their therapist. Please share this questionnaire with any person who you know may be interested.

Please feel free to comment extensively if there is insufficient space on the questionnaire.

Thank you.

General Overview

1. PERSONAL INFORMATION

I am involved with Autism because I am... (*)
A parent or family member of a child with Autism
A teacher in a school with Autistic learners
A therapist working with people with Autism in my practice
Someone involved in adult services for people with Autism or other mental disability
A medical doctor
A facilitator assisting in a home programme or alongside a learner in a school
Other

Please select an option so we know how you are involved with Autism
If OTHER then please specify:

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2. MORE SPECIFIC INFORMATION AROUND THE AGE OF RANGE OF THE SPECTRUM DISORDER

The age group that I am most interested in or have the most experience with is: (*)
Diagnosis
The young child immediately after receiving diagnosis and around the age of 3
The young child of pre-school age (3 - 6)
A child of primary school age (7 - 13)
An adolescent
An adult
Other

Please indicate which age group you are most interested in of have the most experience with.
If OTHER then please specify:

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3. I AM MOST INTERESTED IN FINDING OUT INFORMATION ABOUT AND / OR SHARING INFORMATION ABOUT EDUCATION SERVICES SUCH AS:

I am most interested in talking about: (*)
Home programmes / Interventions in general
Home programmes – ABA
Home programmes – Other than ABA
Pre-schools that cater for children with Autism
Primary Schools (Mainstream - Remedial - Special Needs - Autism-specific)
Secondary schools (Mainstream - Remedial - Special Needs - Autism-specific)
Adult skills development programmes (adult lives at home or alone)
Adult Independent living programmes (adult lives in supported environment)
World of work for people with Autism

Please advise us on what you are most interested in talking about.

4. WHAT "TYPE" OF AUTISM?

I am most interested in or know the most about: (*)
Asperger’s syndrome
High Functioning Autism
'Kanner’s’ Autism
Low functioning Autism
Autism with co-occurring problem of epilepsy
Autism with the co-occurring problem of mental retardation
Autism with co-occurring problem of self injurious behaviour
Autism with co-occurring problem of high anxiety
Autism with co-occurring problem of depression
Other

Please indicate what \"type\" of autism you are interested in or know the most about.
If OTHER then please specify:

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5. PLEASE COMMENT ON YOUR PERCEPTION OF WHAT FAMILIES SEEM TO BE MOST INTERESTED IN OR WORRIED ABOUT:

I think families who have a child with Autism of very concerned about the following aspects OR

As a parent of a child with Autism I am most concerned about the following: (*)
Behavior – How to manage challenging behavior
Diet / meals / food and eating issues
Biomedical concerns
Schooling
What can I expect as my child grows older?
How can I prepare for my child’s future if she/he outlives me?
Where do I start and what is most important?
Belonging to an Autism-community
The effects of Autism on the family
Other

Please indicate what your perception is of what most families aeem to be interested in or concerned about.
If OTHER then please specify:

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6. PLEASE COMMENT ON WHAT YOU THINK IS IMPORTANT TO CONSIDER AROUND SCHOOLING IN GENERAL?

I think that the best place for a child/my child with Autism is in this type of school: (*)
An Autism-specific school where every child is on the spectrum
A school where children have a range of disabilities
Full inclusion in a school where there are children without disabilities
At home in a home programme
Other

Please advise us which type of school you think is best.
If OTHER then please specify:

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I think these are important aspects to consider when selecting a school or enrolling an Autistic learner in a formal school setting: (*)
An Individual Education Plan* (see next block)
An academic curriculum including all subjects
Self care skills
Formal communication programme
Therapies such as speech/OT taking place during school hours
Sports and physical activities
Leisure activities
Practical / Functional skills such as cooking, sewing etc.
Creative skills such as art, music, drama
Computers and technology
Basic Literacy programme of reading, writing and Numeracy skills
Does it offer Vocational training
Does it offer leisure/hobby-type activities
Other

Please indicate what you think are the nost important aspects to consider when selecting a school.
If OTHER then please specify:

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I would expect an *Individual Education Plan to be: (*)
Drawn up in consultation with the family and professional team
Drawn up by the professional team only
Drawn up by the family only
Reviewed annually
Reviewed 2 or 3 times during one year
Reviewed every 2nd year
To contain a minimum number of outcomes – no more than 10 - 15 in total
To be extremely detailed and contain as many outcomes as needed to address all areas of deficit
To list areas of strength and areas of deficit
To include plans that must be followed at home
Other

Please indicate what you think an \"Individual Education Plan\" should be
If OTHER then please specify:

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7. PLEASE COMMENT ON WHAT YOU THINK IS IMPORTANT TO CONSIDER AROUND DAILY SCHOOLING?

I would like School programmes to include the following aspects during the school DAY / Daily timetable: (*)
Meetings or Assemblies for whole school
Evidence of schedules
Daily music
Daily Therapies
Meals
Computers / technology
Sports
Leisure activities
Outings
Academic programmes
Functional skills
Specific Sensory Integration activities
Other

Please inidcate what you would like School programmes to include.
If OTHER then please specify:

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8. PLEASE GIVE SOME DETAILS OF A CURRICULUM THAT YOU ARE AWARE OF AND THAT YOU APPROVE OF AND HAVE SEEN BENEFITS FOR THE CHILD WITH AUTISM:

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9. PLEASE INDICATE WHETHER ANY OF THESE TOPICS WOULD INTEREST YOU:

I would enjoy participating in a discussion around these topics:
Listening to a parent of a young adult with Autism
Listening to a parent describe the road that the family has traveled with their child, regardless of age of the child
Looking at a case study of a classroom activity that has been particularly successful in implementation
Looking at a leisure programme that has been particularly successful in implementation
Parent support groups
Parent Professional combination groups that meet regularly
On line Chat groups within a South African / Gauteng setting
Personal Accounts – problems and solutions
Personal Accounts – successes and failures
Listening to an adult with autism talking about their experiences?
Other

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If OTHER then please specify:

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10. PLEASE INDICATE WHETHER YOU WOULD BE INTERESTED IN ATTENDING A DEMONSTRATION ON ANY OF THESE ASPECTS OFTEN ASSOCIATED WITH AUTISM:

I would like to attend a demonstration/lecture (not as interactive as any of the other workshop topics) on this/these aspect/s often associated with Autism:
ABA session (with a child or video footage)
Boardmaker (AAC device)
The Gluten free/casein free diet
TEACCH based work session
Using social stories
Exploring toys that learners with ASD enjoy
Listening to and watching a demonstration of Makaton
Listening to and watching a demonstration of the use of South African sign language with people with Autism
Other

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If OTHER then please specify:

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11. Please specify if there is any speaker that you would like to offer a key note address at the beginning of the Workshops:

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12. Please feel free to add any additional comments that will help us to design a 2-day series of workshops that will address your most pressing questions or concerns.

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Each workshop will be 1hour - 1 hour 15 minutes in length. There will be a workshop leader who will introduce the topic and facilitate ongoing discussion. The leader will facilitate the discussion to allow participants to add value to the discussion without monopolizing the workshop.

Thank you for your participation.


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