SHARING A DIAGNOSIS
Self awareness includes recognizing your own traits, feelings, and behaviors.
For young people with autism this may involve developing an awareness of their diagnosis
A 'fragile sense of self' may leave pupils vulnerable. Help to understand their diagnosis can help improve their self awareness, self confidence and self esteem.
“knowledge of diagnosis may help shift a youngster’s role towards one that is more active and (potentially ) cooperative – understanding why things are being done in certain ways “ Whittaker (2006)
Parents are usually the best people to share a diagnosis. In some circumstances they may find it beneficial to involve someone else who knows the child well and provides other support. This can be particularly the case with some adolescents who may accept explanations better from someone not within the family.
There are often concerns about the timing of discussions about diagnosis. Despite an increasing number resources there is limited research to provide guidance on when and how to begin the process.
Sometimes discussion is prompted by the prospect of an ‘accidental disclosure’ based on raised awareness in schools, the increasing emphasis on pupil participation in self- assessment, review meetings and planning, or questions from young people about why they have additional support, perhaps from an outreach teacher.
Anecdotally a ‘drip feed’ process works is more effective than a one-off event, “ with the adult gradually feeding information and ideas and helping to connect these to the individual’s emerging sense of self.” Whittaker (2006)
He also notes that from anecdotal evidence, “it seems to be easier to begin the process well before adolescence to reduce the risk of more extreme reactions, when the youngster’s responses may be intensified by the other complications of adolescence”
In a view supported by other writers Shore (2003) recommends “Consideration of developmental level rather than age should be the focus. It is when a child becomes aware of their difference that they must be informed.”
Attwood suggests that children younger than 8years may not consider themselves particularly different from their peers and have difficulty understanding the concepts.
Parents, staff and other agencies involved should carefully consider a range of approaches and views of the implications (positive and negative) before beginning to share information. Further discussion will also be required to decide who else needs to know, especially within the school situation, and the implication in Senior phase when considering destinations after school.
In general most approaches to discussing a diagnosis with a young person follow a similar pattern of
- Recognizing that each individual has a unique blend of abilities, talents and needs.
- Identifying the benefits and difficulties of these characteristics.
- Being aware that feelings and reactions can change depending upon what is happening.
- Identifying possible challenges related to difficulties and strategies which may be useful.
- Use of resources such as workbooks, information leaflets and books, autobiographies.
- Opportunities for ongoing discussion