Supporting Individuals with Pathological Demand Avoidance
 – A Practitioner’s Perspective

By Cathleen Long, Independent Social Worker

An edited version of this article also appears in Community Care - the leading online resource for social workers (link to follow)

I’ve been a qualified social worker since 1993 and have a wealth of professional experiences in working with people of all ages, with an array of differences and difficulties. In 2010, I started practising as an independent social worker where primarily I assess children, young people and adults who are on the autism spectrum for Special Educational Needs and Disability Tribunals, the Court of Protection and Judicial Review. I often undertake parenting assessments where one or both parents have additional needs. I regularly run autism training courses for social care staff. In December 2017 I gained an MA in Autism and was awarded ‘The Professional Learning Award Outstanding Achievement (Autism)’ by the University of South Wales.

Increasingly in my work I’m coming across young people and adults whose presentations are complex - they might have a combination of autism, a communication disorder, Attention Deficit Hyperactivity Disorder (ADHD), Dyspraxia Hypermobility and Dyslexia, to name a few. Whereas some individuals have an existing diagnosis or multiple diagnoses, in other cases they have no diagnosis at all. Whilst all cases are unique, there’s one thing that all these individuals seem to have in common – traditional parenting or conventional behaviour strategies, even those recommended for autism spectrum disorders, don’t work. Parents often tell me that their local authority has recommended they attend a weekly parenting course so they can learn to set appropriate boundaries and manage their children more effectively. These efforts are sadly often counterproductive and futile. Many parents are told “there’s nothing wrong with your child, it’s your parenting”, with professionals making suggestions about how parents can rectify their perceived ‘inadequacies’. During my involvement with these children and their parents or adults and their families, when their needs are re-assessed, their presentations are often found to be best described by a Pathological Demand Avoidance (PDA) profile of autism.

PDA is defined by Newson et. al. (2003) as ‘An obsessional avoidance of the ordinary demands of everyday life’. PDA is now recognised as part of the autism spectrum, a view endorsed by the National Autistic Society. ‘Demand avoidance’ is included in The National Institute of Care and Excellence (NICE) Pathways Guidance as a sign and symptom of possible autism. So, there’s no denying PDA exists (NICE, 2019).

Individuals who present with this diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. Their demand avoidant behaviour is rooted in an anxiety-based need to be in control. PDA is a lifelong condition, and, with the right support, people can learn to manage their anxiety levels by using sensory approaches to self-soothe and finding socially acceptable ways to avoid or navigate anxiety-provoking situations. However, this takes trial and error, time and persistence to achieve.

Janet and Lucy’s story

Janet is Mum to 6 year old Lucy who has a diagnosis of ASD with a PDA profile. When asked about Lucy’s PDA, Janet commented:

"If Lucy doesn't want to do something, it's impossible … She is fearful of other children … When Lucy arrived at school, she would sit in the car and she was unresponsive. There was nothing I could do to coerce Lucy out of the car".

Janet attempted to home educate her daughter, providing a combination of “small bursts” of teaching with intermittent time using the trampoline in the garden as a reward/motivating factor. Lucy wouldn’t engage. Janet told me she can't "force" Lucy to take part in activities she doesn't want to do. Consequently, Janet was ‘threatened’ by her local authority with prosecution for her daughter’s non school attendance. Janet was advised by Lucy’s school and her social worker to do everything in her power to get Lucy to attend. She found herself in the position of being told to wrap Lucy in a blanket (as Lucy refused to wear clothes due to her sensory differences) and carry her to the car, with Lucy kicking and screaming. When Janet told the local authority about how unhappy she was doing this, no alternatives were offered.

Lucy was diagnosed privately as having autism with a PDA profile, but the local authority refused to accept this. Janet was subsequently accused of having Fabricated or Induced Illness (FII), formerly known as Munchausen’s by proxy, and child protection proceedings were instigated with a view to Lucy being accommodated by the local authority under Section 31 of the Children Act 1989.

FII is an extremely rare form of child abuse where the carer, usually the biological mother, fakes or causes the symptoms of illness in their child. Cases of fabricated or induced illness are hard to prove and some experts dispute their existence. At the low end of the spectrum, mothers fabricate accounts of their child’s illness. They don’t directly harm the child but, instead, give a convincing but untrue account of the illness. The next step up is falsification, where the mother manipulates evidence of the child’s illness. At the most extreme end of FII, the child is deliberately caused harm with the effects misrepresented by their mother to medical professionals. In 2008, the government published Safeguarding Children in Whom Illness is Fabricated or Induced, along with a training pack, which describes FII as “rare”. A study in 1996 said that incidence of FII in children under the age of 16 was 0.5 per 100,000 (McClure et al., 1996). In a 1999 study, that figure rose to 89 per 100,000 (Denny et al., 2001).

There are many women like Janet who are wrongly accused of having FII - primarily because the diagnostic criteria for FII can be easily and readily attributed to the parent of a child with a PDA profile of autism. With PDA, the child’s history, physical, or psychological presentation can show discrepancies with the findings of examinations, assessments or investigations, and they have one or more of the following: symptoms only appear in the presence of the parent/carer, child responds poorly to prescribed drugs or other treatments, historical accounts presented are unlikely to have happened, child’s normal daily activities are minimal (e.g. non-attendance in school) and concern is expressed by relatives or other professionals. The parent/carer can also often present as very knowledgeable about their child’s condition (usually because they have been searching for a long time for answers to help them with their child’s complex presentation) which further compounds the suspicion of FII (Royal College of Paediatrics and Child Health, 2009).

Another factor, which I’ve noticed when meeting mothers who have been accused of FII, is that often they themselves have been diagnosed as being on the autism spectrum, or their presentation leads me to believe they are on the autism spectrum. Research by Gullon-Scott and Bass in 2018 points to: The wider need to educate health, care and education professionals to consider the possibility of autism in parents where there are expressed concerns about the excessive ‘medicalisation’ of their children. Professionals need to be vigilant and consider all possible explanations for parents’ behaviours before moving to suggest FII, in particular when their children have a diagnosis of autism. (Gullon-Scott & Bass, 2018, p. 10).

Most parents/carers of a child with a PDA profile of autism are at a loss to understand why traditional parenting approaches are unsuccessful. When they seek to implement sanctions to promote desirable behaviour, their child will become inordinately distressed and sometimes extremely aggressive towards caregivers. Children with a PDA profile often present differently according to their environment. Thus, a child might mask their difficulties in school and, when they return home, their behaviour manifests to extreme proportions.

In my experience, the key to supporting parents who have a child with PDA is for professionals to really start to understand the PDA presentation rather than requiring parents to repeatedly engage in parenting courses to learn and relearn parenting approaches which will not work.

As an independent social worker, I was contacted by Janet and asked to assess Lucy for the purpose of informing her Education, Health and Care Plan (EHCP). I assessed Lucy in her home environment over a two-day period observing her behaviour and interactions with her mother and the environment. What became increasingly apparent was that Lucy had extreme sensory processing differences she repeatedly removed all her clothes each time Janet dressed her – and that Janet was doing everything she could to provide good enough parenting for her daughter. Janet welcomed the opportunity to talk to me about her experiences. Parents feeling able to tell me their story is an important aspect of my professional role as often parents feel a great sense of relief when their experiences are listened to and validated. During my assessment of Lucy, I wondered whether Janet may possibly on the autism spectrum too and we discussed this openly.

I helped Janet to develop her own plan to secure an EHCP which would appropriately and robustly meet Lucy’s needs. Janet engaged an excellent solicitor and, finally, after two years of attending Child Protection meetings where Janet’s parenting was repeatedly called into question, Lucy was taken off the Child Protection Register. During this period, I provided Janet with telephone support and was able to reassure and encourage her when she believed nothing would ever change. Lucy has since received home tuition as part of her EHCP and is now preparing to transfer to a specialist residential school for children with autism.
 
Ed’s story

Ed is a 22 year old man with a PDA profile of autism. He attended a specialist placement where he could only manage around 45 minutes per week of education. Staff working with Ed recognised he was extremely logical and also that he was very knowledgeable about cars and car mechanics.They innovatively decided to buy Ed a car in need of restoration which he meticulously worked on with one-to-one support. The car project formed the basis of Ed’s education and helped develop exceptional knowledge and skills in mechanics which, given the right support, he could use in employment.
After leaving his placement prior to his 18th birthday, Ed experienced many crises including a series of admissions into psychiatric units under the Mental Health Act 1983 and some serious altercations with the police.

Recently, Ed moved into a flat where he was assessed as needing 40 hours per week of one-to-one support. A care provider, with very good credentials, was identified by his local authority and commissioned to provide Ed’s care and support. It was quickly realised that Ed didn’t respond positively to confrontation or the feeling that he was being ‘controlled’ by staff: he would become either aggressive or he would experience a distressing meltdown when his expectations were not met by staff. Whereas some of the support staff working with Ed provided him with good practical and emotional consistency, others appeared to be determined to ensure Ed met their perceived expectations of him.

Ed is extremely articulate and highly intelligent. He’s not afraid to say precisely what he thinks, and he’s astute at recognising inconsistencies and injustice. To some professionals, Ed might seem to be a ‘serial complainer’ but the reality is that his seemingly antagonistic presentation was being fuelled by his high levels of anxiety, when written and verbal communication were not clear or when pre-arranged plans were not adhered to. What Ed needed was for staff to implement strategies whereby his anxiety levels were kept to a minimum and where he was provided a sense of control over his day to day life. Demands placed upon Ed needed to be kept to a minimum and gauged on how anxious Ed was presenting at the time. The use of language was important because a direct request would often provoke Ed’s anxiety and therefore the best approach was to always give him options, never seeking to back him into a corner. When staff sought to take control and have the upper hand with Ed, this was when situations escalated, causing Ed to feel hopelessly misunderstood and sometimes he expressed ideas of suicide.

As Ed’s care and support provision has recently broken down, I’m now supporting him to ensure he receives the care and support he is entitled to in accordance with the Care Act 2014. When I first worked with Ed, I noticed he was very anxious (blinking excessively, shallow breathing and stimming) and he was highly sceptical about my ability to support him. However, we’ve developed a relationship whereby I’m committed to advocating his needs with his local authority and ensuring he is no longer blamed, as has happened, about the breakdown in his care provision. I have recognised that Ed is hypersensitive to a person’s tone of voice and therefore I try to maintain calm when talking with him. If his anxiety is triggered, he responds with a tirade of verbal abuse and avoidant behaviours (for instance he’ll refuse to answer his phone when I call, and he won’t be home when I visit). Ed and I have worked collaboratively to look at his care and support needs and it seems the best option is for a creative, person-centred package of support to be implemented and managed by Ed and his parents, utilising Direct Payments.

Conclusion
 
My experience of supporting individuals with a PDA profile of autism has taught me to listen to what people tell me rather than engaging in an assessment of their care and support needs with preconceived ideas about what to expect. It is about learning to recognise when parents have genuinely exhausted their internal resources to support their child, and for professionals to promote their wellbeing as opposed to undermining and vilifying their parenting abilities. Parenting a child with a PDA profile of autism can be exhausting and so often, as well having their parenting styles scrutinised, parents/carers are left feeling they are ‘wrong’, when the reality is many professionals have much to learn about PDA.
 
References

Denny, S. J., Grant, C. C., Pinnock, R. . (2001). Epidemiology od Munchausen syndrome by proxy in New Zealand. Journal of Paediatric Child Health, 240-243.
Gullon-Scott, F., Bass, C. (2018). Munchausen by proxy: under-recognition of autism in women investigated for fabricated or induced illness. Good Autism Practice , 9-11.
McClure R. J., Davis P. M., et al. . (1996). Epidemiology of Munchausen syndrome by proxy, non-accidental poisoning, and non-accidental suffocation. Archives of Disease in Childhood, 57-61.
Royal College of Paediatrics and Child Health. (2009). Fabricated or Induced Illness by Carers (FII): A Practical Guide for Paediatricians. Royal College of Paediatrics and Child Health.