Parents experience a wide range of emotions when their child receives the diagnosis of Autism Spectrum Disorder. Many parents go through a phase of denial before they begin to accept the diagnosis. Often their most challenging task is in answering the many questions of society. After receiving a diagnosis, parents come to a challenging aspect- disclosing it to society. The decision of whether to disclose the diagnosis to those around them is often a difficult task for parents.
Disclosing a child’s diagnosis of Autism has both pros and cons. Several aspects need to be addressed when parents confront the decision. These include.
● Deciding to whom they need to disclose.
● How they need to disclose the diagnosis
● Autism awareness and acceptance -Debunking myths and preconceived notions about ASD.
● Potential negative consequences of disclosure
- Deciding to whom they need to disclose:
Parents need not have to disclose their child’s diagnosis to everyone around them. The fear of their child being labelled as ” autistic” and its associated stigma often tends to cause parents to hide the diagnosis from significant people dealing with their child. Parents need to consider the following factors when disclosing the diagnosis to someone.
- What is their relationship with the person?
Relatives and close family friends who interact with the child often can be considered when disclosing the diagnosis depending upon whether the person is likely to accept the child positively.
- Will this person be able to understand and support my child in any way?
The general attitude of relatives and friends during general interaction can help parents in deciding whether they are likely to involve themselves in motivating and supporting their child. If not, parents need not necessarily divulge information about their child’s diagnosis.
- Does this person have a significant role in my child’s life?
Teachers, educators and significant others who are involved in the child’s life needed to be made aware of the child’s diagnosis. It can help them in interacting with the child and understand the
difficulties the child may face in daily situations.
Critically evaluating these factors will help the parent to decide to whom they should disclose the diagnosis.
- How do they need to disclose the diagnosis?
Parents when explaining their child’s diagnosis of Autism emphasise their child’s difficulties such as in social interaction, maintaining attention to tasks, repetitive behaviours, adherence to routines, and other sensory issues that the child has. Parents also need to highlight their child’s strengths and special interests. This can help the people involved with the child to find ways to motivate and encourage the child.
When autistic children show signs of distress such as yelling, hand flapping or head banging due to a sensory meltdown, people unaware of the child’s neurodevelopmental condition may interpret these
behaviours as children being too pampered and ways children try to avoid doing tasks at hand. Hence, when people are made aware of the diagnosis, they can understand the underlying cause of the child’s
inappropriate behaviours and find ways in providing support to the child.
AUTISM AWARENESS AND ACCEPTANCE- DEBUNKING MYTHS AND PRECONCEIVED NOTIONS ABOUT ASD
When parents disclose their child’s diagnosis of Autism, they indirectly play a role in creating autism awareness and acceptance of autistic children by society. Parents can help in clearing misinformation and myths regarding autism such as:
- It is caused by immunization
- Poor parenting can cause autism.
- Autistic children cannot perform normally.
When parents explain to people the importance of their child receiving the intervention, they create awareness as well as promote acceptance.
POTENTIAL NEGATIVE CONSEQUENCES OF DISCLOSURE
Everyone may not accept the diagnosis of ASD in a positive way. Parents need not realise that they need not explain everyone they meet regarding their child’s diagnosis. Teachers may underestimate the child’s abilities and may sometimes neglect them from Participating with their normal peers, assuming they might not perform well. Teachers and educators need to be made aware of the importance of inclusion and providing positive support. Psychological help and family support can help parents to cope with the conflict and pressure they face from society.
