3.1 Working with Parents
Over the last decade government policy has supported and promoted the concept of partnership working ( PHIS Report, 2001; ' Getting it right for every child', 2006c). This partnership is between agencies and professionals as well as families and individuals and is welcome and positive progress. Parents have a number of new rights including having their views considered and to be informed and involved in decision making in a number of aspects of their child's education (Education (Additional Support for Learning) (Scotland) Act 2004; Scottish Schools (Parental Involvement) Act 2006).
This concept however can present particular challenges for parents. How can parents be involved in dialogue, negotiation and decision-making on behalf of their child without relevant information that includes at least a basic knowledge of ASD and of the processes that involve their child?
Parents are correctly recognised as essential in many aspects of their children's education but where the child has an ASD parental participation is crucial. This participation will enable the child to gain the best possible outcomes.
Careful consideration should be given on how the school can best support parents who are awaiting their child's assessment or going through the diagnostic process. The same applies to those parents who choose not to seek a diagnosis for their child.
Parents, like their children, are not a homogenous group and will be at differing stages of acceptance of their child's diagnosis, have varying levels of knowledge and understanding of ASD, and may have widely differing views on approaches and treatments.
What parents can offer the school is unique, detailed, in-depth knowledge of their child over time. Information should be sought from parents as soon as possible and, when added to the formal assessments undertaken by the various professionals, gives a useful and more holistic view of the child. This process should continue throughout their school years and will lead to more effective teaching.
A possible framework for asking parents about their child could include the following questions:
- Are there any activities that your child likes?
- Are there any activities that your child dislikes?
- What is your child good at?
- How does your child prefer to communicate with you?
- Does your child have a particular friend or preferred playmate?
- Does your child have a 'special interest'?
- Are there any particular sensory issues?
- What do you do when your child becomes stressed or distressed?
- Is there anything else that you feel is important for us to know?
Such meetings offer the opportunity for the development of parent/teacher relationships. Parents will feel reassured that the teacher is interested in their child, pleased to be given the opportunity to discuss these issues and to feel their opinions are valued. Listening is a major component in any communication process and 'not being listened to' is a frequent criticism of professionals by parents (Dale, 1996).
For all parents, having a child with ASD was not planned. Parents may have experienced a long and tortuous route to final diagnosis and when they are told that their child has a life-long disability emotions and reactions are complex. What does this mean for their family, and family life, both in the short and long term?
- Coming to terms with the diagnosis is often likened to the grief cycle associated with bereavement - Denial, Anger, Bargaining, Depression, and Acceptance (Kubler-Ross, 1973). Parents will require tolerance and understanding from all those dealing with them and this is especially true during the period following diagnosis.
- For some parents adjusting to the diagnosis is prolonged and difficult and they will continually return to one particular aspect of the grief cycle. It is also worth noting that whilst some parents can accept the child's disability it would be incorrect to assume they have come to terms with it, no matter how long ago the child received the diagnosis.
- Overwhelming guilt is a common reaction and this may have implications as parents can become overly sensitive to any criticism (actual or perceived) and view it as a comment on their parenting skills. Parents need to be reassured that it is not their fault the child has an ASD.
- As well as coming to terms with, and learning about, their child's difficulties parents also have to grapple with aspects of the education system that are completely new to them.
- It becomes easy to be confused and overwhelmed by the processes and systems, the technical language, the various approaches, roles of different professionals and the complexities of inter-professional working.
- The vast majority of parents care deeply and desperately about their child. They will take time to understand the complex nature of their child's difficulties, particularly in the early days following diagnosis.
- Parents need to feel the school is the best setting for their child to achieve and may spend considerable time and energy exploring various options. Documented evidence of good practice in ASD within the school will be reassuring for parents.
- When working together parents have a right to expect empathy, understanding, mutual respect and tolerance from professionals who in turn have a right to expect mutual respect, civility and recognition of their knowledge and expertise (for more information about parents and professionals working together see Section 6 - Resources 70 and 71).