Living with Pathological Demand Avoidance (PDA), One Mother’s Story

PDALast week we published a story about Carolyn Weighill and her fight for better recognition and diagnosis of Pathological Demand Avoidance (PDA). Carolyn has recently launched an e – petition. The story can be found here.

Following on from this story Autism Daily Newscast was contacted by a parent who also wanted to share her story about her daughter’s struggle to gain a PDA diagnosis and additional support.

Both mother and daughter wish to remain anonymous.

We asked Michelle (not her real name) if she could tell us a little about her daughter and when she was diagnosed with ASD.

Michelle told us that her daughter 10 was given a working diagnosis of Asperger’s Syndrome with demand avoidance in February 2011.

When we asked Michelle to explain the difficulties about the lack of a PDA diagnosis, she said:

“The problem with that is that she doesn’t tick enough boxes for straight-forward ASD but as PDA is not recognised, she slips through the gap.”

Michelle goes on to say that the usual ASD strategies don’t always work for her daughter and different strategies need to be used instead to deal with PDA.

Michelle adds:

“If we had a PDA diagnosis then other people involved, in particular school, would know to use the correct strategies to relieve her anxieties.”

Michelle told us that her daughter doesn’t demonstrate her anxieties and meltdowns at school. She has been asking for additional help for her daughter since she started in Reception class and is only now receiving extra help.

Michelle believes that the school should implement PDA strategies:

“If they implemented proper PDA strategies with her, her anxiety level would be lower by the end of the day which would reduce the risk of a meltdown when she got home.”

Michelle wanted to express her view that PDA is not widely recognised and that as a direct result of this she is often told that what she is dealing with is “just a parenting issue” which she finds both insulting and not helpful to her daughter.

We asked Michelle if she had received any help for herself and her daughter and if she thought there was enough help and information out there for families living with PDA.

She told us:

“The PDA board on Facebook is quite simply a lifeline – parents who ‘get it’, don’t judge and understand what you face on a daily basis.”

She then added that there is a local additional needs group which have also been really supportive, even though they are not PDA specific.

She told us:

“Official help is practically non-existent. We get no support from anywhere outside of friends and family. We were referred to the local children’s centre who offered parenting classes then discharged us as they didn’t know what else they could do to help.”

Michelle says that without the help and support of people that she has found on Facebook and with local friends then she would be totally on her own.

We asked Michelle what daily life is like for her and her family. She voiced:

“Daily life is like walking on a knife edge. One of the key features of PDA is the Jekyll & Hyde-like character of the child. Sometimes you know what is causing their anxiety and can adjust your day accordingly.”

Michelle told us that her daughter will appear to be fine but will then explode. Michelle is hit, punched, kicked, bitten and verbally abused on a daily basis. She told us that she gets it more than the rest of the family as her daughter feels safest with her.

Michelle also has a teenager daughter; she told us that her daughter with PDA will say horrible and hurtful things to her sister when in the middle of a meltdown.

“(My daughter) gets so upset afterwards, knowing she has upset people. She will either cry for ages or lose her temper and shout in defence.”

Family life is extremely difficult Michelle told us, and that everything has to revolve around what her daughter can cope with. This ranges from days out to holidays and what and when the family can eat.

Michelle ends by telling us that they all face judgement from the wider family and outsider and that frequent comments include:

“Oh well she always behaves for me, She can’t be autistic, she talks to me and she doesn’t look autistic”

Michelle has recently signed the e – petition Pathological Demand Avoidance (PDA) which can be
found here.

The Global PDA Facebook Group can be found here. A search on Pathological Demand Avoidance will result in various PDA groups serving different geographical areas.

Autism Daily Newscast would like to thank Michelle for sharing her personal story with us.