Roadmap No diagnosis Communication

Passing on significant information regarding health, educational and psychosocial needs to individuals and groups involved in daily family life is vitally important in creating and maintaining connections as well as ensuring that your/your child’s needs are met in the best way possible. Explaining why a diagnosis has not been identified can be a repetitive and stressful experience for some families.

Talking with people who are a close part of daily life builds their knowledge and understanding, which can help on many levels including emotional and practical support.

School

Local and national legislation exists in many areas to ensure students with disabilities can access and participate in education on the same basis as other students.

Accessible and inclusive learning spaces, adequate teacher staffing and training, consideration of physical and social factors impacting education access and active working relationships between carers/families and education professionals all contribute significantly to the experience of attending school. With an undiagnosed condition, it is very important that there is clear documentation from specialists detailing signs/symptoms and the associated impact to maximise access to appropriate school assessments, aids and services.

Resources

Talking with family, friends, affected child and/or siblings

The questions of when, who and what to tell depend on individual circumstances such as adjustment and coping, types of relationships and impact of the condition for the affected individual and family.

Many families wonder how and when to talk to their child/young adult about health issues +/- disability and differences, in an age and developmentally appropriate manner while promoting psychological well-being. Openness about health issues affecting daily life increases children’s coping, improves their attitude towards their differences, reduces stress and results in fewer psychological issues long-term.

Unaffected children can have many different feelings about siblings with health issues +/- disability depending on individual factors such as age, temperament and particular aspects of their sibling’s condition (e.g. challenging behaviour, communication difficulties, level of care required).

Pregnancy planning when a family member has an undiagnosed condition can raise many concerns about the possibility of recurrence- seeking specific information from a genetic professional can help with clarifying risks and options as well as decision-making.

Resources

Suggest a resource: send email to gcwg@udninternational.org