Online questionnaire

This questionnaire has been designed for parents of children with an Autistic Spectrum Disorder currently resident within the UK. Autism and Asperger's Syndrome are classified as Autistic Spectrum Disorders (ASDs).

It is designed to evaluate their experiences of the school system, and to gauge the opinion of these parents to inform our campaign.

The questionnaire is designed to supply us with usable information whilst guaranteeing your anonymity to outside bodies. Thank you in advance for taking the time and trouble to complete this questionnaire. We hope it will generate a large amount of interest in the campaign. We would greatly appreciate any additional comments you would like to make. These can be inserted into the box marked 'Further Information' at the end of the questionnaire, or emailed separately to:- questionnaires@autismrights.org.uk. If you want to return to the opening page, click here.

If you have more than one child with an ASD, please could you fill in separate questionnaires for each child.
We regret it is simply not possible to collate responses any other way.

1) Does your child have a formal diagnosis of Autistic Spectrum Disorder, Autism, or Asperger's Syndrome?

Yes
No
In the process of being diagnosed
Awaiting a diagnosis

2) What is the age of your child with an ASD?

3) Child's gender

Male
Female

4) Your Marital Status

Married
Single
Long-term relationship
Divorced
Widowed

5) Current Educational Provision for your child

Specialist ASD
Special
Mainstream base
Mainstream with support
Mainstream without support
Home education (please also tick previous provision)

Education otherwise than at school (please also tick previous provision)
Please note: could home educators and those whose children are currently educated otherwise than at school please fill in the questionnaire as if for the previous placement. Please could you also supply some further information in the box at the end of the questionnaire.

Record of Needs / CSP / Statement

Co-ordinated Support Plans (CSPs) will replace Record of Needs on 14th November 2005, under the new Addional Support for Learning (ASL) Act. There is a transition period to allow for the requisite changes to take place, but the Scottish Executive has made it very clear that not all children with a Record of Needs will get a CSP.

6) Does your child have a Record of Needs (Scotland) or a Statement of Needs (England, Wales and Northern Ireland)?

Record Of Needs: Yes
Record Of Needs: No
Record Of Needs: In preparation
Statement Of Needs: Yes
Statement Of Needs: No
Statement Of Needs: In preparation

7) Does your child have a CSP?

CSP: Yes
CSP: No
CSP: In preparation

If your answer to both questions 6 and 7 is 'No', please go to question 14.

8) How long did this take to put together from start to finish?

6-8 months
Less than 1 year
Less than 2 years
Less than 3 years
More than 3 years

9) How long did it take to get agreement from your local authority to start this process?

Less than 1 year
Less than 2 years
Less than 3 years
More than 3 years

10) Did the local authority follow the content of your child's Statement / Record of Needs?

Wholly
Partially
Not in any meaningful way
Not at all

11) Was any of the information which you supplied of your child's needs or abilities inserted into the
Record of Needs / CSP / Statement?

Yes
No

12) If so, which sections did these go into (please tick all that apply)?

For Record of Needs:
Part IIIa
Part IIIb
Part IV
Part V
Part VII (The parental submission)
For CSP
For Statement

Assessments

13) Did the local authority assess your child for the Statement / Record of Needs:-

To your complete satisfaction?
So that you were reasonably satisfied?
Not satisfied?
Not at all satisfied?

14) What was wrong with the assessments (please tick all that apply)?

Nothing
They did not assess my child's needs as an autistic child
They failed to assess my child's cognitive strengths and weaknesses, bearing in mind the patchy nature of his disability
They did not involve me as a parent, with my expert knowledge of my child as an individual
I cannot make any kind of definite judgement, because I have not been able to access any assessments of my child.

Individualised Educational Programme (IEP)

15) Does your child have an IEP?

Yes
No
Don't Know

If the answer to this question is 'No' or 'Don't Know' please go to question 20

16) Do you have a copy of your child's IEP?

Yes No

17) Did the school involve you in its construction?

Yes No

18) Do you feel that your input was valued?

Yes No

19) Did the school use the information you supplied in a way that was constructive for your child?

Yes No

Appeals

20) Have you ever made an appeal: (check all of the boxes which are relevant)

To a Tribunal (for a placement)?
To a Sheriff Court (for a placement)?
To a Tribunal (to change the terms of a Statement / CSP)?
To the Scottish Ministers (to appeal the terms of a Record of Needs)?
To a local authority Appeals Committee (for a placement)?
To a local authority Appeals Committee (against an exclusion)?
To none of these.

Problems with School Placement

21) Have you ever withdrawn your child from their placement?

No
Temporarily
Permanently

22) If 'Yes', was this your child's current or a former placement?

Current
Former

23) Do you want to withdraw your child from their placement?

Yes No

24) Your reasons for this (tick all that apply):-

Safety
Effect on child's health
Effect on child's mental health
Inappropriateness of education
Breakdown of relationship with school

25) Has your child ever been excluded from school?

Yes No

26) If `Yes`, was this a frequent occurrence?

Yes No

Mental Health

27) Has your child ever been referred to Child and Adolescent Mental Health Services?

Yes No

28) If 'Yes', do you believe that your child's school experiences were a direct contributor to this?

Yes No

29) If you have withdrawn your child from school, what improvements have you noted in their behaviour
(please tick all that apply)?

Less stressed
Better sleep patterns
Greater powers of concentration
Fewer `rages` / outbursts of temper / tantrums
Greater motivation to learn
Improved self esteem
Greater contentment
None

Relationship with Local Education Authority and School

30) When dealing with your local authority and school, have you noted any of these features in their communication with you
(please tick all that apply)?

Letters from the local authority or school arriving at weekends and holidays
Worsening behaviour from your child following a complaint from you
Consistent failure to give you information on your child's education such as (please tick all that apply):-
Copies of assessments
Copies of reports
Vagueness of home / school diary entries
Evasion in answering questions
Misrepresentation of information
Prevention of communication with teaching staff
None of these?

31) Do you receive minutes for all of the meetings concerned with the following
(please tick all that apply)?

Record of Needs / Statement
CSP
IEP
Review Meetings
Other meetings for the purposes of educational planning. e.g. Pre-SCAT / initial meetings following diagnosis

32) Overall, how accurate would you say these minutes are?

Totally Accurate
Reasonably Accurate
Partially Accurate
Inaccurate in key areas
Totally Inaccurate

Relationship with Professionals

33) In the way they question you, have you ever felt that the professionals dealing with your child are seeking to label you with Munchausen's Syndrome By Proxy (MSBP)?

Yes
No
Don't Know

34) If `Yes`, do you think this may be to avoid (please tick all that apply)?

Expenditure on health care for your child
Expenditure on educational provision for your child
Admitting their professional ignorance

35)To your knowledge, have you ever been investigated by any professional for MSBP?

Yes No

MSBP was 'discovered' by Professor Roy Meadows, who has since been barred by the General Medical Council. He claimed that some mothers want to harm their children in order to gain attention for themselves. The clinical guidelines subsequently issued by the government to define MSBP overlapped in several of their criteria with the international clinical criteria for ASD. An unknown number of mothers of autistic children have been labelled with MSBP, and some have had their children taken into care.

36) Do those health professionals involved with your child provide:-

Support in dealing with your local education authority
Neutrality
They will always choose to maintain a relationship with their fellow `professionals` first and foremost
A mixture of the above, depending on the professional concerned?

37) Does your child have a Social Worker?

Yes No

38) If 'Yes', in its effects, has this been:-

Useful
Neutral
Negative

Training and Professional Development of Teaching Staff

39) Do you know what ASD training has been given to your child's teachers?

Yes No

40) If you do, what level is this training at?

1 day course (e.g. NAS)
4/5 day course
Post graduate module
1yr post graduate certificated course (such as provided by the University of Birmingham)
Other professional certificated course (such as the University of Birmingham's Web Autism course)?

41) Please tick those of the following aspects of ASD and ASD specific education that you know your child's teachers are familiar with:-

Theory of Mind
Central Coherence Theory
Executive Function
Visual Timetable
Triad of impairments
Social Stories
Social Contracts
Personal Event Memory
Developmental Play
Benefits of Physical Exercise
Circle of Friends
Buddies Schemes
Motivational Interests
Biomedical aspects of ASD (e.g. GF/CF diet)
Benefits of Occupational Therapy
Learning to Mind Read (Baron-Cohen)
Benefits of Drama Therapy
Benefits of Music Therapy
Sensory processing problems
Visual processing problems
Auditory processing problems
Activity Schedule
Use of symbols and associated software, such as Boardmaker and Clicker
Signing (e.g. Makaton and BSL)

42) How often are you permitted to contact your child's teachers?

I have open access (this is reasonable regular contact, as required by the parent, through personal contact, 'phone, email, home/school diary, that enables a consistency of approach between home and school)
Weekly
Termly
Parents' Evenings
Whenever we have a `problem`
Parents' Evening if lucky

Extra-curricular / Leisure

43) Is there any provision of ASD specific playschemes in your area?

Yes No

Information needed

44) What kind of information would you like to have better access to (tick all that apply)?

Rights
Educational Methodologies / Interventions
Health / Biomedical issues

Help needed

45) Please tick all of those areas below in which improvement is needed to give you and your child the support you need:-
Appropriate respite
Appropriate healthcare
Nutritional Supplementation costs
Societal Awareness and Compassion
Professional knowledge and competence
Advice, information and support in fighting for the equal rights of my child to an appropriate education

Further Information / Questions / Comments.

If you wish to provide any further information, or ask any questions, please use the box below.

Thank you very much for taking the time to fill in this questionnaire.

The validity of this questionnaire will rest on the ability of Autism Rights to verify that it has been completed individually. As such, we need to have your email address and postal address, with our guarantee that none of this information will be accessible to anyone apart from those of us compiling the results for Autism Rights. Please submit your name, address, and email address below.


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Copyright © Fiona Sinclair November 2005 (original version copyright © Fiona Sinclair September 2004).


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