We don’t have to look very far to find research giving us rather disheartening statistics about the poor emotional health of children with autistic spectrum disorder (ASD). Up to 70 percent of children with ASD develop mental health difficulties, as opposed to 10 percent of the typical population. Of course, as practitioners and parents of special children, we don’t need to read this research to know it; we live and experience the effects of these statistics every day.
For children with Pathological Demand Avoidance (PDA), where high anxiety is the main feature of the condition, the effects of poor emotional health are exacerbated even further. Over time, children and families often find themselves locked into survival patterns that limit their access to social and community facilities others take for granted. Even in schools and social groups that seek to be inclusive, children with PDA can be isolated, making it even more challenging to create a positive and secure sense of well-being.
Key profile characteristics and their impact on emotional wellbeing
Understanding the PDA characteristics that most affect emotional health is an important starting place if we are to stand a chance of improving negative emotional health patterns. This in turn helps us to direct our support and interventions to the areas that create the most emotional impact.
Early Intervention in these areas, while not eliminating all difficulties, will set up a culture of support that can turn the tide of poor emotional health.
Key Characteristics of PDA and their emotional impact
- A need to be in control of the environment and all the people in it.
- Poor emotional regulation or ability to reflect or learn from their emotional experiences.
- Difficulties co-operating with usual teaching structures or methods exacerbated by unrealistic expectations that they hold for themselves or others.
- A constant underlying anxiety about real, perceived or possible demands that may be made in their daily life.
- An inability to make or maintain positive or reciprocal relationships with others—adults or peers.
- Low self-esteem because of their inability to work in the same way as their peers. Negative emotions around their feelings of being let down by others.
What can we do?
The first thing we need to do is recognize that the child’s refusal to cooperate with requests comes from a place of anxiety rather than willful behavior. This changes our predominant feeling to one of empathy, rather than annoyance or disempowerment.
After this, we feel inclined to put in place the flexible approaches and environmental changes that act as a catalyst for improvement. Moving from a directive approach to communication (with high expectations of cooperation), to making suggestions with a more nonchalant attitude, has to be a priority. A simple but effective approach is to allow children to work or play on the fringes of family or school spaces and provide a “safe place” for children to retreat to when needed.
Making the child the center of interventions rather than applying pre-packaged models is vital. Discovering their motivations and interests, showing a genuine interest in these—and using them to cleverly intrigue and delight the child—helps to establish a foundation from which to build.
Surrounding our children with people with high emotional intelligence who are intuitive to their ongoing needs is vital in the medium term. Building rapport and relationships of trust is important and becomes beneficial in times of developmental regression.
Although many meltdowns can be minimized they cannot be avoided altogether. Drawing a line through difficult episodes and starting each new communication with a blank page (without any form of remaining judgment) not only sees children through the episode but also builds trust for the future.
Tackling issues around personal and social development is always difficult for children with PDA as this highlights their weaknesses—they often see this as a criticism of their character. Ignoring these issues is not an option once the stage of forming stable relationships with adults has been reached.
Using some of the child’s typical PDA strengths is a productive way to tackle priority emotional issues. Many children enjoy imaginative play and drama activities. Using these to depersonalize issues by presenting them through a third party is a useful way to scaffold the thinking needed to understand or prepare for situations that would normally cause anxiety. These could include preparing for medical interventions or dealing with anxieties around the spread of germs or illness.
Another productive way of tackling difficult issues is to use the children’s hyper-alertness to their environment and their ability to absorb information from their vicinity. Presenting information in an indirect way often enables them to pick up on key concepts while allaying their anxieties about communication expectations. Talking about a difficult issue while the child is focused on a favored activity may be helpful here.
Adults talking about their own strategies for overcoming similar issues, while in the same room as the child, provides information in a subtle way that the child may be able to absorb while in a regulated state and later use when faced with a similar situation.
For children and young people with PDA to develop positive self-esteem over the long term, they need to formulate an accurate understanding of their strengths and difficulties and an acceptance of these. Understanding strategies that can help them overcome their barriers and taking the initiative to “buy into” these will give them the best chance of developing and maintaining positive emotional health.
There are many programs and resources available to help children understand their diagnosis, and these can be adapted for children with PDA. Families and professionals who know the child well will need to work together to provide an individualized approach to highlighting the child’s strengths and challenges and the people and strategies that can best help them.
Many parents are anxious about tackling diagnosis with their child for fear that it will exacerbate anxieties and poor mental health. While there may be an initial adverse reaction, long-term studies show that the benefits of knowing and understanding the way his/her mind works outweigh any negative short-term response.
Knowing when to tackle diagnosis can be problematic, but normally parents have a gut feeling about the right time. This often occurs when they begin to notice their child is becoming aware of differences between themselves and their peers.
Discussing agreed terminology before talking to the child is important. Describing PDA as a “form of autism” and the differences in terms of “brain wiring” can be helpful. It is vital that all participants in the diagnosis program take an honest and open approach where the child is valued for who they are. It is also important to recognize that the program is just the beginning of self-realization and actualization for the child. Layers of understanding will occur over time as they grow and develop both cognitively and through their life experience.
Children with PDA are the best teachers for both parents and professionals about their condition and the most effective strategies for supporting positive emotional health. Nothing beats hands-on experience!
Rather than children relying on the help of mental health professionals alone, we need to share our learning and experiences of our children’s personal journeys with them in order to benefit the many children and families who will follow in their footsteps.
This article was featured in Autism Parenting Magazine Issue 121 – Autism Awareness Month