As a profile of autism, Pathological Demand Avoidance or Persistent Drive for Autonomy (PDA) can be understood by recognising the autism spectrum as dimensional, in which complex and overlapping patterns of strengths, differences and challenges differentiate different people with the same diagnosis of Autism Spectrum Disorder. When particular traits cluster together, a profile or presentation may be identified and in the case of PDA, this has aided families who have children who meet the diagnostic criteria of autism, but the strategies needed to help manage their wellbeing and improve speech, communication and sensory integration are different than other presentations of autism.
At present, PDA is not widely understood, nor is it included in the DSM, or the diagnostic criteria. Thus, some medical and allied health professionals are familiar, or have never heard of it. However, when a child or person is identified as PDA, this can be a turning point for a family or carers who have been unable to understand how best to approach family life. As many as seven out of 10 children identified with PDA are unable to attend school. This is primarily related to the key features of PDA which include a need for control related to anxiety, a persistent drive for autonomy, which render rigid and structured environments very challenging.
As a result, home education is increasingly the last choice for many families with PDA children, and some with preschool-aged children are able to recognise early on that school will be too difficult. HEN surveys have identified a high proportion of home educating families have children with differing needs, including autism, and it is not uncommon for families in local groups to have children with similar profiles.
Home education for PDA children can be much more flexible, giving children the autonomy they crave, and the ability to avoid the demands of school, without compromising their wellbeing. Home educators are friendly and helpful, so once you understand the basics of home ed which are explained here (link to Start here) of the best things you can do is to join your local home ed group, and the HEN Vic group (link) and ask for feedback and advice on different options.
You can minimise triggers, incorporate movement breaks, work indoors or outdoors, on the floor, or use games to meet the requirements of the education system. With any home education style, you can retain aspects of school based learning, use online platforms, or use an unschooling model to meet the needs of your child. For those children who have deep but limited interests, these can be used as the basis for all key learning areas. Autism and learning differences can also be used as grounds for one or more exemptions from covering specific KLAs.
Many PDA children prefer to be self-taught, autonomous and learn through natural, everyday experiences because direct or formal approaches intensify internal avoidance and rapidly escalate their ‘fight, flight or freeze’ response. Prioritising collaborative, free-flowing types of learning experiences can establish trust between you and your PDA child, and you can also tailor the environment to be low-demand.
Home education can be a very successful choice for families with PDA children. While reducing the demands does not remove all difficulties, it can reduce the level of stress for the child and the entire family.
Home Educators Australia PDA Support (Facebook group)