Parent Carolyn Weighill Talks about Pathological Demand Avoidance (PDA)

Jessica2Carolyn Weighill from Bracknell, Berkshire – is a mother of 2 fighting for better recognition and diagnosis of Pathological Demand Avoidance (PDA) in the UK.

Carolyn’s daughter Jessica 9 shows PDA behaviours but as yet does not have a diagnosis. Carolyn told us that recently Jessica has been referred by CAMHS (Child and Adolescent Mental Health Service) for an ADOS (Autism Diagnostic Observation Schedule) to Occupational Therapy for her sensory issues and also to a psychotherapist.

Carolyn has been asking for help since Jessica was 3.

“Jessica was referred to Action for Children at 3.5 years old. She was diagnosed as being ‘shy’, they did agree Jessica was displaying a lot of autistic traits, but not enough to diagnose. Basically, they said she could communicate too well to be autistic.”

In April 2011 Jessica developed a phobia of choking and refused all solid foods and as a result was referred to CAMHS.

“We had an assessment with CAMHS and they also agreed that Jessica was displaying autistic traits, but that not everything pointed to autism so we were not referred for an assessment. We were discharged immediately as she had begun to eat some more solid food.”

Carolyn told Autism Daily Newscast more about her daughter’s difficulties and that life for herself, family and her daughter is becoming increasingly difficult. One of the major problems for her daughter is being asked to do something. Carolyn explains:

“Her refusal can vary from simple ‘in a minute’ to lying on floor, unable to move, or distracting us by changing the topic, to hiding in wardrobe, under the table, switching to play with toys mode, to violent meltdowns.”

Jessica1
Carolyn told us that Jessica has attacked her and her brother. She will also throw things, headbutt, kick and has even attempted to climb out of her window all because Carolyn refuses to give in to her.

Jessica also suffers from severe anxiety, as do many children who have PDA. She was confirmed with severe anxiety at an anxiety clinic 3 years ago.

However despite Carolyn actively seeking help her daughter remains undiagnosed. Carolyn believes that this is down to a lack of understanding about the condition and a postcode lottery. She has therefore launched a petition to ask for PDA to be acknowledged as a separate diagnosable condition.

‘We believe that PDA autism should be recognised in the UK medical directory as a specific, diagnosable condition. We would like to see government intervention to persue this. PDA has been recognised as a form of autism for over 30 years with the National Autistic Society, yet getting a diagnosis through the NHS is a postcode lottery. This condition affects hundreds of children and their families, yet because of lack of diagnosis, there is also lack of support.’

The National Autistic Society (NAS) state on their website that PDA is increasingly recognised as being part of the autistic spectrum.

‘Recognition of PDA as a condition is fairly recent, and the apparent social abilities of many children with PDA may mask their problems. As a result, many children are not diagnosed until they are older. They may already have had a suggested diagnosis of autism or Asperger syndrome but parents may feel that something about that diagnosis didn’t quite fit. It is usually the surface sociability and the often vivid imaginations of children with PDA which confuse professionals regarding the autism spectrum diagnosis.’

Carolyn told us that Jessica appears to be sociable but that she feels this lacks any real depth. Jessica is also very enthusiastic about role play. Carolyn explained to us:

“She once opened her bedroom door when I was hovering nearby, growled at me, a really nasty snarl then shut the door in my face. She plays teacher/pupil games all the time with the dogs and other children”

The NAS discuss role play on their website:

‘People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction. They often have highly developed social mimicry and role play, sometimes becoming different characters or personas.’

Jessica
At the moment Jessica is struggling with every day activities with no support. Carolyn explained to us that Jessica has very little sense of danger and becomes increasingly anxious when demands are placed upon her.

The NAS state on their website the following information about gaining a diagnosis:

‘To get a diagnosis, a GP referral to a local paediatrician who specialises in autism spectrum disorders may be sufficient. If local paediatricians are not yet familiar with diagnosing PDA, advice could be offered by the Elizabeth Newson Centre, part of Sutherland House Children’s Services (www.norsaca.org.uk).’

Pathological Demand Avoidance e-petition can be found here
More information about PDA can be found on the NAS website here