Parents of children with autism find themselves in a unique position, aware that their child is vulnerable and has many challenges as well as opportunities ahead of them in life. 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 Autism, and may have widely differing views on approaches and treatments.
Parents can also have widely differing views on the educational provision for their child, and the school they attend – even within the same school.
A cornerstone of effective, active partnership arrangements includes providing parents with opportunities to express their views and perceptions as well as enabling them to raise issues of importance to them. This can be achieved through a range of sources including direct contact, interviews, surveys and questionnaires. There will be some parents of children with an ASD who, for a variety of reasons, are difficult to engage .However it remains important to seek their views.
Parents concerns are often as much about their child's social experiences within the school environment as about academia. Many of these conerns are sensory and structural related issues that if not addresses can lead to a build up in anxiety and stress for the child at school or later at home.
Whilst many young people are said to be coping well at school, many ‘everyday’ events such as a raised voice from a teacher can have a significant impact on how they express their behaviour at home. As the young person holds in the anxieties and stresses of their day, on return home they may no longer be able to contain themselves. This can be extremely difficult for the whole family as they are often the target of pent up frustrations. Schools can often view these 'difficulties’ as only 'home issues', although it has actually been prior events that have been the catalyst. Parents can feel that the link between school and home life is not fully acknowledged, recognised or understood.
Parents can have particular concerns around arrangements for transitions, especially the ones from year to year group, or from one setting to another e.g. Early years to Primary.
A wider appreciation of the perspectives of parents can also be gained through reading personal accounts, or listening to interviews or presentations.
Parents may at times:
- feel they or their child is being judged by others whether it be, people in the street, other parents, their own family or staff
- see a different side of their child than professionals dofeel isolated from the support of others, e.g other parents, families
- feel they are not being listened to
- have significant constraints on their time that are out with their control
- struggle to get the help they need when they need it
- live with significantly higher levels of stress
- try hard but can sometimes struggle to follow things through
- feel that others don’t always understand or support their child in the way they should
- have less in the way of support systems than professionals do