Getting the right help for your child – whether that’s an EHC Plan, a diagnosis or enough one-to-one support at school – is often down to luck. Some schools, health professionals or local authorities are more ‘clued up’ or sympathetic than others.
If your child has suspected pathological demand avoidance (PDA) it’s even more of a lottery. Although there is growing awareness of the condition, many experts still see it as an aspect of autism rather than existing in its own right. Whether you can obtain a diagnosis and access support very much depends on where you live.
In simple terms, people with PDA have a distinct profile of characteristics – for example, appearing more sociable than others with autism – and will resist everyday demands or expectations to an extreme and illogical degree. They also don’t generally like structure or routine.
PDA is a Very Complex Profile
Suzan Issa is a former special needs teacher and SENCO who was herself diagnosed with autism, PDA and ADHD as an adult. She points out that people with PDA face a constant, internal battle on whether to conform to what others want or say ‘sod it’ and rebel.
“There’s a misconception that people with PDA are selfish or arrogant or want to control other people,” she says, “but that’s completely untrue. I don’t want to control anyone – in fact, that would be a kind of demand in itself. I am just very anxious about anything that threatens my ability to be self-led. But resisting a demand isn’t a choice, it’s a compulsion. It’s like trying to put your hand in a fire – your brain just will not let you do it. It’s exhausting – you’re fighting yourself as well as the rest of the world.
“But for some people with PDA, the fight for autonomy becomes too much,” she adds. “They give in completely and become like a robot which then makes them vulnerable to exploitation.”
Supporting Families
Unsurprisingly, having a child with PDA can be bewildering and frustrating for families as none of the usual parenting strategies – for either autistic or neurotypical children – tend to work. Because of this, two years ago, Suzan set up ‘Raising a Wild Child’, a consultancy offering support and advice to parents and professionals.
She advises parents to question their own attitudes before they can help their son or daughter. If for example, they’re worried that their child isn’t going to school, does this definitely mean, she prompts, that they’ll never get a job or have anywhere to live? “I tell them that the outcome they’re most afraid of is more likely to happen if they push against the child.
“I’ve worked with school refusers who suddenly decide that they need to go back to school or make friends,” Suzan continues. “One boy hadn’t been to school for five years but he decided he wanted to go to college to do animation. He said, ‘How do I get there?’ He worked out that he needed to get GCSEs so he went back to school and passed them all. If people are allowed to set their own goals, they will work towards them.”
Surge in Cases of PDA
Polly Kerr is a solicitor specialising in education law. She says that post-Covid, there has been a huge increase in families taking their local authorities to tribunal to obtain acknowledgement and the correct support for their children’s PDA.
“I think this is partly because there’s a better understanding of PDA among parents and professionals,” she comments. “Demand-avoidance is a common trait in autism but PDA is more than that – it’s much more extreme.”
Many families are forced to go to tribunal, Polly says, to secure ‘EOTAS’ funding – education other than at school – to be able to provide a package of care and tutoring precisely tailored to the child’s needs. “With PDA, it’s more likely that a child’s mental health has suffered and they’ll need specialist support,” she explains. “The problem is, the EHCP or EOTAS coordinator at the local authority might not be well-versed in PDA. They might question why a child needs to have a particular therapist, for example, not understanding that they need to work with someone with experience of the condition. It’s usually about saving money.”
And even though an EOTAS package may eventually be granted, she says, as it’s intended as a short-term solution, it is reviewed every year. Seeing that the student has been doing well with the correct support, the LA might then try and push the child back to a more formal setting, not realising how disruptive this might be.
Are you looking for specialist support for your child with PDA?
Find out about Suzan and ‘Raising a Wild Child’ here.
Find out about Tees Law here.
