What Are The Symptoms
Pathological Demand Avoidance is now widely understood to be part of the autism spectrum. Individuals who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This is rooted in an anxiety-based need to be in control.
The main features of PDA include:
- resists and avoids the ordinary demands of life, which might include getting up, joining a family activity or other day to day suggestions. This may be the case even when the person seems to want to do what has been suggested
- using social strategies as part of the avoidance eg distracting, giving excuses
- appearing sociable on the surface, but lacking depth in their understanding
- excessive mood swings and impulsivity
- being comfortable in role play and pretend, sometimes to an extreme extent
- obsessive behaviour that is often focussed on other people.
Pathological Demand Avoidance Syndrome: Some Thoughts Prompted By A Proposed New Diagnosis
February 2016 Pathological Demand Avoidance Syndrome is thought by some to be an emerging syndrome. Its central feature is an obsessive avoidance of the ordinary demands of everyday life . The recent screening in New Zealand of the British documentary series Born Naughty has increased interest in PDA. In this article, Jenny Gibbs, Consultant Clinical Psychologist, considers PDA, and reflects on the pros and cons of diagnostic labels in general.
Core Features Of Pda Are:
- A need to resist normal, everyday demands made by others
- This resistance appears to be a way of managing acute anxiety
- Unlike those with autism, learners with PDA may use social skills to manipulate these skills are, however, at a functional and logical level rather than at a deeper emotional level.
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Language Delay Often With Good Degree Of Catch
The large majority of children with PDA are delayed in some aspect of their early speech and language development, although this may be dependent on their intellectual ability. This initial delay seems to be part of their overall passivity and there is often a sudden degree of catch-up. Individuals with PDA have more fluent use of eye contact and conversational timing than others on the autism spectrum. Generally, they tend to have less difficulty understanding non-verbal communication. However, some do have difficulties such as taking things literally and understanding sarcasm and teasing.
While the majority of people with PDA become fluent in using expressive language, some have a problem with their understanding. They can have difficulty with processing what they hear and need additional time to do this. This can lead to misunderstandings and disruption to the communication process which can contribute to their behavior.
Should Pda Be Recognised As Part Of An Autism Diagnosis
In May 2018, the PDA Society published its Being Misunderstood report. The report highlighted Pathological Demand Avoidance experiences across the UK. Parents, professionals, adults with PDA and family members contributed to the online survey which formed the report. The results demonstrated that people with a PDA profile of autism are especially poorly understood and supported by current services.
The need for people with PDA to have specific accommodations made for them is high. This is particularly true for school-age children when you consider that 70% of individuals with a PDA profile dont thrive in the school environment.
So why is PDA recognised by some professionals and not by others?
Why have some people never heard of PDA in the first place?
Dr Gloria Dura-Vila is a Consultant Child and Adolescent Psychiatrist and Medical Lead for ASD in Surrey and Borders NHS Trust. She also works in private practice and offers consultation to schools. Her long-held passion to communicate in the best way what having ASD means, compelled her to write the bestselling My Autism Book: A Childs Guide to their Autism Spectrum Diagnosis. Here, she talks amongst other things about why PDA should be recognised by professionals. In Addition to why PDA friendly strategies should be included in the childs management plan.
A difficult journey for parents
Why is it important to identify and describe PDA in a young person as part of the ASD diagnosis?
How to explain PDA to your child
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The Difference Between Odd And Pda
- 19th May 20194th May 2020
One of the questions I hear often is, “what is the difference between Oppositional Defiance Disorder and Pathological Demand Avoidance “. This question often comes from parents who are trying to figure out what is happening for their child when they are seeing them struggle to an extreme degree. These parents are struggling to cope and to understand and are desperately researching oppositional or defiant behaviour, or they have reached out for support and a professional has suggested to them that their child exhibits signs of ODD.
Why are there so many letters? What in the hell is the difference between being oppositional and being demand avoidant? Is one worse than the other? The PDA description sounds just like my child but they aren’t autistic, are they, wait, are they?
I get it, I have been right there…
Before I get into the similarities and differences, I want to give you a brief description of each so that we know where we are. I will be skimming the surface but don’t worry, I will include links to more information:
Oppositional defiance disorder
Use Of Social Strategies To Avoid Those Demands
To avoid the typical demands of life, these individuals will use some type of social distraction. This can range from making excuses, changing the subject, and procrastinating to running away or aggression. The reaction can quickly escalate if the person is pushed rather than being allowed to avoid the demand.
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Understanding Pathological Demand Avoidance
Ive used the cat-dog metaphor to describe what its like to raise my son, who is gifted with ADHD and autistic PDA . The latter is a term increasingly used to describe autistic children who exhibit extreme resistance to demands and requests, no matter how big or small, even if the demands are of obvious benefit and interest to them.
PDA means that, for my son, compliance is impossible. Cooperation, however, is very possible, and far more likely when you relinquish the idea of compliance.
I have accepted that I will never be able to force my child to do anything. Instead, I focus on guiding him toward cooperation. It took years for him to trust that we really werent going to try to force him to do things. Now that the trust is established, we treat each other mostly respectfully as equal adults .
We creatively problem-solve for undesirable things that must be done, explaining the logic and science behind solutions.
Required tasks must be backed by science and logic, and we must give him time to understand and decide to cooperate, even with all the evidence laid out. Sudden demands will nearly always be met with refusal, so we try never to make them. But this is hard, and requires a total change in all thinking about parenting. We try to see ourselves as coaches now rather than parents.
Im deeply grateful for the online groups of parents and adult cats that have helped us figure out what kind of a cat we have and how to treat him properly.
Language Delay Seems Result Of Passivity
Ninety per cent showed speech delay and most had had speech therapy contact, which therapists themselves usually described as difficult and ineffective because of demand avoidance typically, they seem to catch up independently of speech therapy, the great majority by the age of 6 years. In about one in four of cases we had no note of social timing or facial expression, suggesting that it was normal, but 66% were noted as having normal social timing when engaged, and 52% as having normal or over vivacious facial expression. However, speech content was judged as abnormal in 86%, including being over the top or bizarre. Additionally 26% had used jargon 44% had had a period of non-social echolalia, usually brief 26% showed semi-social mimicry and 46% showed social mimicry . In adults, the amount of fantasy persisting ensures that most will continue to have abnormal content in their language.
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Other Conditions And Areas Of Overlap
PDA is often diagnosed alongside other conditions, such as ADHD, dyslexia, and dyspraxia. This may be a result of overlapping conditions but can also be due to confusion over the diagnosis. Before being diagnosed with PDA, some people will have already been diagnosed with autism, ASD or atypical autism. PDA can also be present alongside more generalized learning difficulties and, at times, the apparent verbal fluency of people with PDA can mask genuine difficulties in understanding.
The Difference Between Defiance Demand Avoidance And Pathological Demand Avoidance
So what makes the defiance different? Here is where it is super tricky. All human beings can be defiant and all human beings can be demand avoidant. This means both children can display both behaviours. However this also makes it easy to understand.
We have all felt like we do not want to do as we are told by the person in front of us because we feel angry inside ourselves, or angry with them, or angry about having to do the task. When we refuse on these grounds, we are being defiant and our refusal is driven by anger. In these cases we outright refuse or we become obviously and outwardly angry.
We have also all felt like we do not want to do something or are unable to do something for other reasons that are not because we are angry or annoyed at being asked. It could be from exhaustion, a lack of motivation or from apprehension at the complexity or length of the task. Ever left an essay to the last minute? This apprehension can sometimes be more extreme and be better characterised as anxiety. Avoiding doings things because the thing causes us anxiety is typical. In some people, including those with mental health difficulties and neurodivergences, certain tasks or activities are anxiety inducing. These people will go to greater lengths to avoid these tasks than others. All of this is considered demand avoidance and it is driven by either a lack of motivation, lack of executive function or by stimulus that causes anxiety.
A quick summary
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How Can I Support My Child With Pathological Demand Avoidance
Pathological Demand Avoidance is a behavioural characteristic that can be seen in children, young people, or adults. People with a PDA profile avoid everyday demands and expectations. This demand avoidance can come with high levels of anxiety.
There is some disagreement on whether it should be an official diagnosis. But many NHS trusts and childrens services are starting to acknowledge PDA more. Either way, the behaviours that come with PDA can have a very real impact on a child or young persons life.
How Is Asd Diagnosed
There is no simple medical test for diagnosing ASD.
To diagnose a child with ASD, a healthcare professional observes the childs levels of:
- communication
This could include the childs:
- verbal skills
- how they relate to others
- behaviours related to their interests and activities
- repeated actions related to how they speak, move or use objects
To determine the severity of ASD, the healthcare professional observes the amount of difficulty the child has with:
- social communication
Medical professionals use the Diagnostic and Statistical Manual for Mental Disorders to evaluate ASD.
If a health care provider thinks that your child may have ASD, get a referral for a diagnosis. A specialist will create a detailed description of your child’s strengths and challenges. A team of health professionals may work together for this assessment.
Testing for ASD will also make sure that this is not a different condition. For instance, sometimes hearing loss can explain your childs unresponsiveness in social situations or when their name is called.
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How Is It Treated
Clinicians generally take a three-prong approach to treating PANDAS:
1. Treating and preventing infections: If the child has a bacterial infection, treating this infection can reduce symptoms and improve outcomes, especially during the first weeks or months of illness. In this case, a physician may prescribe 3 to 4 weeks of narrow-spectrum antibiotics.
2. Addressing immune system dysfunction: Immunomodulatory therapies to address immune system dysfunction may include NSAIDs Oral or IV steroids, intravenous immunoglobulin , therapeutic plasmapheresis, and others indicated by severity. These are only useful in conjunction with infection treatment and psychiatric and behavioral interventions.
If a child has OCD but does not have PANS/PANDAS, there is no reason to pursue a long-term immune treatment. In a study by Nicolson et al, JAACAP 2000, children with OCD but without PANS/PANDAS saw no significant improvement from therapeutic plasma exchange. These therapies are expensive and intensive. Other studies have shown similar results.
3. Applying Behavioral and Psychiatric Interventions: Behavioral and psychiatric Interventions may include SSRIs Anxiolytics, Soporifics, other typical psychiatric medications, and cognitive behavior therapy. When choosing a therapist, Dr. Swedo suggests looking for an expert in OCD treatment:
ARI thanks Sue Swedo, MD, for her contributions to this article.
The Utility Of Seeking A Pda Diagnosis
One of the main reasons for seeking a diagnosis is to access services. A diagnosis of PDA is problematic in New Zealand as it is not a recognised diagnosis and therefore does not provide access to any disability supports. It is important to note that in New Zealand a diagnosis is NOT required to access additional education resources where access to special education services is on the basis of need, not diagnosis, although many children who access special education resources do in fact have a diagnosis. However, a diagnosis is necessary to be eligible for a needs assessment for funded services through the Needs Assessment and Service Coordination services .
Access to services aside diagnosis also promotes understanding about the condition, for families, educators, wider communities and the person themselves. A diagnosis can provide a great sense of relief for families their child has something that can be named and understood and it is not their fault. There are also negatives about diagnoses people may see the diagnosis not the person, and sometimes diagnoses can in themselves be stigmatising.
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Is Pda A Type Of Autism
PDA is now recognised as being a sub-type of Autistic Spectrum Disorder . However, there are some significant differences: a child or young person with PDA may seem to have social and communication skills which are within normal parameters. There may be little or no appearance of autistic traits and as such, PDA may persist as a hidden disorder, with parents feeling they are failing and ineffective, while the childs behaviour becomes increasingly entrenched and controlling.
In PDA, it is anxiety that drives the expression of inflexible, oppositional behaviour: unable to process and adapt to their environment, the individual expresses a rigid, overwhelming expression of control. Negotiation technqiues, using concepts of rewards and best interests, will be ineffective.
Lability Of Mood Impulsive Led By Need To Control
Sixty eight per cent of the sample in studies A and B showed extreme lability of mood, and among these 30% included a switching from love to hate in their behaviour. At an apparently trivial level, the child may repeatedly invite the mothers suggestions, only to scream rejection and reassert control: any suggestion from someone else can be perceived as intolerably demanding. Need to control is the other side of the demand avoidance coin, and the more actively avoidant or aggressive children are often described in this way.
Among the adult sample, parents were able to differentiate between impulsivity and lability of mood. Fourteen adults were both impulsive in behaviour and prone to mood swings, 12 of these individuals being capable of violence when angry. Two had mood swings but were not impulsive . One was impulsive without mood swings, and one was neither these two were not violent to others, but both could be self-injurious. It seems that lability and impulsivity are lasting risks, though not necessarily appearing in every child there may be neurological implications.
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How Can I Support My Child
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What Is Pathological Demand Avoidance Syndrome
Behavioural strategies. Pathological Demand Avoidance is a condition which is part of the autism spectrum, and is characterised by an overwhelming need to avoid or resist demands. This information sheet provides some behavioural strategies to support a person with PDA.
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Pathological Demand Avoidance And Autism
What is Pathological Demand Avoidance ?
Pathological Demand Avoidance is a profile of autism where people avoid daily demands, often utilizing social strategies to do this. The underlying cause for this avoidance is said to be a high level of anxiety, usually from expectations of demands being placed on them, which can lead to a feeling of not being in control of a situation.