We’re hearing much more in the last few years about Pathological Demand Avoidance, a condition on the autism spectrum, although many parents are still finding it difficult to get PDA recognised as an official diagnosis.
We have personal experience of PDA, and let me tell you, it doesn’t stop at 18. So I know it is incredibly difficult to manage, because techniques designed for autistic children can be much less likely to be successful. It can be very frustrating for both parent and the child themselves.
Today on SNJ, parent blogger “The Indulgent Mother” who believes her son to be PDA, has written a guest post about her experience and some tips she’s learned along the way from dealing with Child & Adolescent Mental Health Services (CAMHS).
Our struggles to get our son's Pathological Demand Avoidance recognised
By The Indulgent Mother
My son is autistic and has a presentation that almost entirely fits the descriptors for Pathological Demand Avoidance (PDA). However, we live in an area where our local Child and Adolescent Mental Health Services (CAMHS) do not accept PDA as a diagnostic term or as a distinct presentation. This has made acquiring the necessary support and intervention for my son near to impossible.
Clinical labels should not be necessary for obtaining the correct professional input – there are NICE Guidelines [CG128] that explicitly state that a “profile of the child’s strengths, skills and needs should be developed so that it can be used to create a needs-based management plan”. Unfortunately, this approach is costly in both time and money and, in my experience, subsequently does not happen.
I have (now successfully) fought to have the label of PDA included within my son’s Education and Health Care Plan (EHCP), because the inclusion of this term defines which strategies and interventions will most likely be of benefit to my son and which are more likely to lead to a rapid deterioration in his mental health.
Our journey, as a family, to reach this legal recognition of his needs has been traumatic. CAMHS – who oversee treatment for my son’s anxiety – continue to play with semantics, phrasing his presentation as “entrenched avoidance behaviour in particular when direct demands are made of him”. This is a confusing approach to take which does nothing to help create a shared understanding of a child’s needs.
The most effective way to help a child with PDA manage their place in the world, is to reduce the demands placed upon them and allow them to have control over their environment. CAMHS, to my mind, operate from a position of rehabilitating autistic children back into neurotypical society while educational institutions require children to comply. Both of these things are likely to cause intrinsic harm to an autistic child who has a need to control their anxiety by controlling their environment.
A mother’s dilemma
As a mother, this means I’m in permanent theoretical conflict with professionals who are providing “treatment” for my child. I have been placed in heart-breaking situations, knowing their interventions will harm my child, but also knowing that if I object, I will be seen as obstructive. Graduated exposure strategies, and direct challenge to my son’s avoidance of situations he finds distressing, very quickly descended for us into verbalisation of suicide, episodes of crisis and being held temporarily under the Mental Health Act.
I have been told by CAMHS that I must ‘tolerate' my son’s distress, because he needs to 'encounter discomfort in order to overcome it'. But if anxiety is a natural response to an autistic brain having to survive in environments that are intolerable due to innate sensory and perceptual differences, then repeated exposure will always cause distress.
As adults we have the autonomy to create our own environment to suit our own needs. I believe that children with PDA presentations should be trusted to find their own place in the world. My son widens his own experiences and ventures into more challenging environments when he is ready, which tends to not elicit intolerable levels of distress. By allowing him to operate within his own window of tolerance he is much happier.
This is of course an idealistic situation that is impractical to fully implement within the wider context of our parenting world; some families can educate at home for example, and some cannot. For us it wasn’t a choice to educate at home but a necessity, in order to contain mental health crisis. However, we still operate within a framework of having to balance meeting the needs of my son with the expectations of CAMHS.
What my experience with CAMHS has taught me
Experience has taught me to log every discussion with CAMHS:
- Take notes of all verbal communications
- Take minutes from all face-to-face meetings
- Keep a record of all strategy suggestions – which ones work, and which ones elicit distress
- Log any behavioural changes in terms of frequency, intensity and duration of distress
- Feedback any concerns to CAMHS and your child’s GP
I now try to adapt their suggestions so they are more bespoke for my son by fitting them around his interests. Using my son’s interests has been the simplest and most effective strategy / tool, to date. If he’s avoiding a task or struggling with a transition, then my fail-safe response is to hold an impromptu quiz on football or to make lists of “Top Five” favourite things. Recognising the very early signs of anxiety developing is crucial. If presented enthusiastically enough, and at the right time, distraction strategies generally work well, such as:
- Word association games
- “I bet you can’t guess how many” games
- “Who am I thinking of” games
- Joke telling – who can invent the most random “knock knock” joke
For my family - where we are all autistic – recuperation, and having time dedicated to recuperation, is by far the most important aspect, enabling us to recover and recharge from executing the expectations of society. This allows us time to be our true, authentic selves, which improves our overall mental health. Trying to fit in is exhausting and exhaustion is debilitating. Respecting recuperation time will lead to a far happier and engaged person than allowing external pressures to take priority.
- The frustration and heartbreak of Pathological Demand Avoidance
- Learning to cope with your child’s Pathological Demand Avoidance
- 70% of children with Pathological Demand Avoidance missing out on education
- Our experience of CAMHS nearly broke us
- Why did my PDA son have to fail in five schools before I was listened to?
- Book Review: PDA by PDAers
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She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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