Two Borders mothers who say their children display symptoms of pathological demand avoidance syndrome (PDA) are campaigning for recognition of the condition.
In December, Mary Black, of Chirnside, and Patricia Hewitt, of Sprouston, presented a petition to the Scottish Government calling for wider awareness and recognition of PDA.
Its symptoms are said to include avoidance such as distracting and giving excuses, appearing sociable but lacking understanding, experiencing excessive mood swings and impulsivity, appearing comfortable in role play and pretence and obsessive behaviour, often focused on other people.
PDA is increasingly accepted as a behaviour profile on the autism spectrum, but not all experts agree.
The condition is not officially recognised in Scotland and without a formal diagnosis, even organisations set up for parents with children on the autism spectrum can’t help.
In January, Mary and Patricia were accompanied by former Scottish deputy minister for education and young people Euan Robson when they attended a petitions committee meeting to give evidence about their experiences and appeal for more understanding.
Their petition asks MSPs “to urge the Scottish Government to promote a wider awareness and acceptance of PDA syndrome among health, education and social care and social work practitioners, and, via the appropriate agencies and bodies, to institute and facilitate training in the diagnosis of the condition, to promote the development of therapeutic programmes for those with the syndrome and provide support for families and carers”.
Mary’s 13-year-old daughter Hannah attended Chirnside Primary School but was unable to continue in mainstream education through to high school.
She now attends classes with David Ward, an educational specialist at Gavinton, four mornings a week.
Scottish Borders Council, however, does not recognise Mr Ward’s qualifications, so Hannah’s family have to pay for her education.
Mary explains: “I was told that her behaviour was a result of her upbringing and that my parenting skills weren’t efficient enough.
“At primary school, she was frequently excluded, restrained and even handcuffed due to her outbursts caused by her severe anxiety.
“Over a year ago, I was told my daughter had a profile of PDA and would require 24-hour care and a specialist education package.
“To this day, the education authorities and child and adolescent mental health services have refused to recognise this condition and have given little support.”
The Scottish Parliament has written to the council regarding Hannah’s education and is also contacting organisations involved in austism, local government and child health and education to find out what they know about PDA and what they are doing to help.
“Every day I am battling,” added Mary. “Social workers, however, have been absolutely fantastic.”
Parents concerned about PDA can email Mary for help at firstname.lastname@example.org