PDA Autistic people experiencing poor mental health and service barriers

Autistic people with pathological demand avoidance (PDA) experience poor mental health and barriers to accessing services, according to a report.

The PDA Society based its report on a survey of 921 PDA adults and parents of PDA children. The survey found that 87% of PDA children and 82% of PDA adults experienced severe anxiety in the last year, while 84% of PDA adults and 40% of PDA children have considered taking their own lives.

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Despite the fact that two-thirds of PDA children and 82% of PDA adults felt they needed professional support for their mental health in the last year, one in four autistic-PDA adults couldn’t identify anyone, either personally or professionally, who could give them the support that they needed. Those who could identify sources of help mostly named friends or family members, as opposed to professionals.

The PDA Society conducted a similar survey in 2019, which found that 19% of parent carers reported that their PDA child had experienced depression. By contrast, in 2023 45% of PDA children and 80% of PDA adults said they had been depressed within the last year.

In their responses to the survey, PDA adults and the parents of PDA children said that not having a diagnosis was being unlawfully used as a barrier to accessing services. NHS statistics from this summer show there are currently 143,119 people on the waiting list for an autism assessment. The PDA Society said that If access to support is dependent on a diagnosis, this increases pressure on diagnostic services and leaves vulnerable people without support, negatively impacting their physical and mental health.

‘It is not acceptable that so many PDA autistic people are struggling with their mental health so acutely that they feel their life is not worth living,” the report said. “We believe that, if PDA people could access the right support at the right time in all aspects of their lives, this would reduce the number of people going into crisis.’

PDA is most commonly described as a profile on the autism spectrum. This means that people with PDA are autistic, and may have differences in social interaction, communication and sensory processing, and some restrictive or repetitive behaviours. In addition PDA people will have a fear response to demands, and use social strategies to avoid them.

Demand avoidance is not uncommon in autistic people; however, most demand avoidant autistic people do not fit a PDA profile. Whilst their behaviours might seem similar on the surface, the approaches needed for PDA autistic people and other demand avoidant autistic people can be different. The PDA Society says that conventional strategies, such as consistent routine and structure, firm boundaries, or rewards and consequences, are not only ineffective with PDA, but can actually make things worse.

The report said a formal diagnosis should not be the criteria for accessing support, and urged professionals to drop one-size-fits all approaches to autistic people. It called for choice and flexibility in how help is asked for and received, and for signposting and specialist support to be made available to professionals so they can offer effective help to PDA people in crisis.

Image: chenspec

More on this topic:

Ombudsman finds councils not offering choice for parents of SEND children

20% of children and young people had a probable mental health disorder this year


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