What Is Pathological Demand Avoidance (PDA)?

Clinicians at our clinic and our colleagues in the fields of child and adolescent psychiatry and psychology have noted an increased frequency of requests for assessment and diagnosis of Pathological Demand Avoidance (PDA).

Pathological Demand Avoidance (PDA) is a controversial subtype of Autism Spectrum Disorder (ASD) that is characterized by an extreme avoidance of everyday demands and a need for control. People with PDA are often misdiagnosed with other conditions such as Oppositional Defiant Disorder or Attention-Deficit/Hyperactivity-Impulsivity Disorder, but the hallmark of PDA is the intense avoidance of demands and need for control.

Pathological Demand Avoidance (PDA) as a conceptual subtype of Autism Spectrum Disorder (ASD) has a relatively recent history. The first description of PDA as a distinct condition can be traced back to the 1980s, when Dr. Elizabeth Newson, a pediatrician and researcher in the UK, first identified a group of individuals with autism who displayed an intense avoidance of everyday demands and a need for control. This eventually led to Dr. Newson coining the term Pathological Demand Avoidance (PDA). (Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Arch Dis Child. 2003 Jul;88(7):595-600.)

Dr. Newson's work paved the way for further research into PDA, and over the years, the condition has become more widely recognized as a distinct subtype of ASD. In recent years, there has been an increased focus on PDA, with growing recognition of the importance of early identification and intervention to support individuals with PDA to reach their maximal potential.

Despite this progress, PDA remains a relatively unknown and underdiagnosed condition, and there is ongoing work to raise awareness of PDA and improve understanding of the condition among healthcare professionals, educators and the general public.

PDA can present in many different ways and individuals may experience varying levels of difficulty with completing tasks, following routines and dealing with change. Some people with PDA may display challenging behavior, including repetitive routines, tantrums and avoidance techniques, as a way of coping with anxiety caused by demands and the perceived loss of control.

It is important to note that PDA is not just about avoiding demands. People with PDA can have a wide range of strengths and abilities and may have good communication skills and strong relationships. However, the intense anxiety and need for control can have a profound impact on their daily lives and may lead to difficulties in education, employment and social relationships.

It is also important to provide the perspective of recent reviews of the literature in which the authors of one review have opined that the evidence does not support the validity of Pathological Demand Avoidance (PDA) as an independent syndrome. However, this term highlights a number of clinical difficulties faced by many children with autism spectrum disorders. These difficulties may be understood by the range of sensitivities that Autism Spectrum Disorder (ASD) is associated with (social, communication, sensory, and cognitive). (Pathological Demand Avoidance: symptoms but not a syndrome. Lancet Child Adolesc Health. 2018 Jun;2(6):455-464.)

In a recent systematic review, the authors identified that the concept of pathological demand avoidance has been criticized for neglecting the potential role of anxiety as a possible underlying or contributing cause. After their comprehensive search, 13 relevant studies were identified that had based the identification of Pathological Demand Avoidance (PDA), directly or indirectly, on descriptions from the original study by Newson and colleagues. The reviewers found that there was a general failure to take account of alternative explanations for the study behaviours. Most studies relied only on parental reports for data while none explored the views of individuals with Pathological Demand Avoidance (PDA) themselves. The problems with definition and measurement in these studies limited any conclusions regarding the defining/diagnostic features of Pathological Demand Avoidance (PDA). (Pathological demand avoidance in children and adolescents: A systematic review. Autism. 2021 Nov;25(8):2162-2176.)

Effective treatment for the clinical features associated with PDA often involves a collaborative approach that addresses the individual's anxiety and provides support in navigating daily demands. This may include therapy, such as Cognitive Behavioural Therapy (CBT) and Exposure and Response Prevention (ERP), medication, and changes to the individual's environment. It is important to work with the person with clinical features associated with PDA, their family and carers, to create a supportive and understanding environment that takes into account their individual needs and strengths.

In educational settings, accommodations such as visual schedules and clear routines can be helpful in reducing anxiety and supporting success. It is also important to work with teachers and support staff to provide a positive and inclusive learning environment that takes into consideration the individual's strengths and challenges.

In employment, accommodations such as flexible working hours and a supportive work environment can be helpful in reducing anxiety and supporting success. It is important to work with the employer to find a suitable solution that considers the individual's needs and strengths.

In social relationships, it is important to provide support and understanding to individuals with clinical features associated with PDA. This may involve working with family, friends and carers to develop coping strategies and provide a supportive environment. It may also involve working with the individual with clinical features associated with PDA to develop social skills and build positive relationships.

Early identification and intervention are crucial for individuals with clinical features associated with PDA to reach their full potential. With the right support, people with clinical features associated with PDA can lead fulfilling and meaningful lives, develop strong relationships and achieve their goals and aspirations.

There are no specific tests to diagnose Pathological Demand Avoidance (PDA). The process of identifying clinical features associated with Pathological Demand Avoidance (PDA) typically involves a comprehensive assessment by a multidisciplinary team of healthcare professionals. The following are the steps involved in the diagnostic process:

1. Clinical Assessment: The first step is to conduct an initial assessment to determine if there are any symptoms and behaviors consistent with PDA. This may involve speaking to the individual and their family or carers about their experiences and observing their behavior.

2. Developmental Assessment: The next step is to gather a developmental history, which includes information about the individual's early years, language development, and social and emotional developmen.

3. .Observations / Assessments: The healthcare professional may also observe the individual in different environments, such as at in clinic, home, school or work, to gain a more complete understanding of their behavior and needs. This may also involve the use of standardized assessments and questionnaires. The observer-rated Extreme Demand Avoidance Questionnaire (EDA-Q) for children has been adapted as an adult self-report (EDA-QA). (The Measurement of Adult Pathological Demand Avoidance Traits. J Autism Dev Disord. 2019 Feb;49(2):481-494)

4. Multidisciplinary Team Assessment: The healthcare professional will usually consult with a multidisciplinary team of professionals, such as a psychiatrist, pediatrician, psychologist, and speech and language therapist, to gather a comprehensive picture of the individual's symptoms and needs.

5. Diagnosis: The final step is to make a diagnosis, which may be done through a combination of information from the initial assessment, developmental history, observations, and assessments.

It is important to note that PDA is not a recognized diagnostic category in the DSM-5-TR or ICD-10 classification, so it may not be immediately recognized by some healthcare professionals. However, a growing body of research and awareness about PDA is increasing recognition of the condition and the importance of early identification and intervention.

It is recommended to seek the help of a specialist in autism or related conditions who has experience in evaluating the clinical features associated with PDA, as the process can be complex and requires a thorough understanding of the condition and its specific symptoms and behaviors.

Is Vaping Better Than Cigarette Smoking?

TBEC Review, CC BY 2.0 <https://creativecommons.org/licenses/by/2.0>, via Wikimedia Commons

Characterizations on the shows Mad Men and Sex and the City notwithstanding, it is widely accepted that tobacco smoking is harmful to your health. Even the TV/film industry uses herbal cigarettes instead of real ones when filming. As a bit of trivia, Carrie Bradshaw continued to smoke in Season 6 when it began in 2003 despite the “real-life” NYC ban on smoking that took effect that same year.

When the famous researchers, Sir Richard Doll and Sir Austin Bradford Hill began looking into to the relationship between smoking and lung cancer in the late 1940s, they initially thought that these cancers were likely related to environmental pollution (coal burning, road tarring and exhaust fumes from motor vehicles) rather than to cigarette smoking.

They initially identified an association between cigarette smoking and lung cancer in 1950 and published their case-control study findings in the British Medical Journal. To further test those conclusions, they set out to conduct a prospective (cohort) study of physicians’ smoking habits. The cohort study by Doll and Hill demonstrated support for a causal relationship (not merely an association) between cigarette smoking and lung cancer.

Carolina Richmond wrote that shortly after the cohort study results were published, the chairman of Imperial Tobacco and his statistician paid a visit to Doll and Hill, disputing their results. That same statistician later quit after Imperial Tobacco was persistent in their refusal to accept the study results. The statistician reportedly used his expense account for the last time by funding a dinner for Doll and his wife.

Richard Doll in 2002

CJ DUB, CC BY-SA 2.0 CA <https://creativecommons.org/licenses/by-sa/2.0/ca/deed.en>, via Wikimedia Commons

Interestingly, Doll himself smoked two ounces of pipe tobacco a week and five cigarettes a day when he was a medical student and during his time in the army. None of his teachers told him that smoking was harmful because it was not known to be a health risk at the time. He gave up tobacco when he discovered the association with lung cancer.

In 1966, the United States became the first country that required a health warning on cigarette packages.

So how much of a health concern does vaping pose?

E-cigarettes or electronic cigarettes are devices that create an aerosol by heating a liquid and the aerosol (or vapour, thus the name) is then inhaled. The liquid is usually composed of propylene glycol and glycerin, with or without nicotine and is usually stored in disposable or refillable structures called cartridges, reservoirs or pods.

Although delivery by alternatives to combustion has appeared in a number of formats since 1867 (“Dr. Scott’s Electric Cigarette”, 10 cents for a 10-pack!) and then again from the early 1960s [“the smokeless nontobacco cigarette” (1963) and the “Favor” cigarette (1986)], the first device in the recent iteration of e-cigarettes was developed in 2003. After being patented by the Chinese pharmacist Hon Lik, it was eventually marketed in China as Ruyan in 2004.

The e-cigarette became part of the U.S. market by the mid-2000s. In August 2013, Imperial Tobacco Group purchased the intellectual property behind the Ruyan e-cigarette for $75 million. The reader will note the same company’s representatives challenged the findings of Doll and Hill some 60 years earlier.

In Canada, the Tobacco and Vaping Products Act (TVPA) became law on May 23, 2018 and also applies to vaping products. It is not allowed for vaping products to be sold or given to anyone under 18 years of age. The sale of vaping products that appeal to youth is also not allowed.  There is a maximum nicotine concentration of 20 mg/ml for vaping products manufactured or imported for sale in Canada.

In the past several years, there have been reports in the USA of severe lung injury associated with e-cigarettes use [EVALI (e‐cigarette or vaping‐associated lung injury)]. It was eventually found that these injuries were in particular related to the use if THC products adulterated with vitamin E acetate.

The regular use of e-cigarettes in Canada and the USA is the greatest among youth who also smoke and the lowest among those who have never smoked.

Potential disadvantageous health impacts of e-cigarettes include their risk of functioning as a “gateway” into smoking cigarettes which then in turn function as more efficient “delivery systems” of nicotine than e-cigarettes. The resemblance of e-cigarettes to cigarettes may re-introduce the habit of smoking cigarettes to a newer generation of vulnerable individuals.

On the other hand, vaping products and other alternative nicotine delivery devices are considered to play a role in reducing the health burden caused by cigarette smoking either by reducing uptake of cigarette smoking or by providing easier ways for transition away from cigarette smoking.

There remain questions on whether declines in youth smoking prevalence are supported or blocked by the use and availability of e-cigarettes.

As per systematic reviews conducted by the Centre for Evidence Based Medicine (CEBM), e-cigarettes with nicotine content have been observed to have been more beneficial than nicotine replacement therapy in maintaining abstinence from cigarette smoking over a 6-month period.

The major concerns about e-cigarettes relate to the nicotine exposure to the user. Nicotine exposure during adolescence can cause addiction and cause harm to the developing adolescent brain mediated by inducing molecular changes that alter the functioning of synapses in the pre-frontal cortex (PFC). During pregnancy, nicotine exposure can result in sudden infant death syndrome, in altered corpus callosum, deficits in auditory processing, and obesity. Consumption of the contents of refill cartridges or bottles containing nicotine can cause acute toxicity and possibly death.

In general, e-cigarettes are evaluated as being considerably less harmful than smoking, based on expert consensus opinions. It is not possible to make definitive statements with regards to their toxicity given the wide range of new devices/liquids that are available.

hhs.gov, Public domain, via Wikimedia Commons

Although long-term studies are still needed, there do not appear to be short-term unwanted effects of e-cigarettes (independent of those that are nicotine-related or contaminant-related) that are considered serious especially when considered in relation to tobacco smoking. 

Nico Caycedo contributed to this post in the Sky Room Blog. Nico is a senior in high school with an interest in pursuing a future career in health sciences.

New Year’s Resolutions

Thinking of resolutions for the New Year?

Make it stand out

Whatever it is, the way you tell your story online can make all the difference.

With 2023 just minutes away, many of us probably have resolutions in mind for the new year. History tells us that most people probably overshoot in their desired plans to change or to do new things over the next 12 months.

The observation that only about 10% of all new year’s resolutions survive beyond mid-February is not an indication that our will power is to blame. It is more likely that the real culprits are the vague and/or unrealistic nature of many resolutions we end up making.  

Experts tell us that the resolutions likely to have staying power are the “realistic” ones that come with a “plan.”

That doesn’t mean we can’t have aspirational goals for the year ahead but it does suggest that if there are concrete steps associated with our lofty goals, those goals have much better chances of being realized. It is often said that goals without plans are merely wishes.

Gym memberships invariably become more popular in the first few months of the year as a popular resolution is to be “healthier.” Perhaps, “dance for 5 minutes twice a week” or “lose 5 pounds in 12 months” are more specific and within reason. If we are living with disabilities, taking a different perspective may be of benefit.

Taking the first steps is an often difficult but necessary part of the process in getting to the end goals. It’s always better to continue with small steps, even if it seems that you’re making little progress. If you hit a slow patch in the journey, accept it with the understanding and intention that that you are going to get started again soon. Don’t let a lapse become a relapse! It may take a few or many false starts before you get momentum built in the right direction.

Better yet, consider sharing your resolutions with people you think will hold you responsible for maintaining the efforts you’ll need to make to achieve them. The best coaches are those who get you to do the things you least want to do in order to accomplish the things you desire the most. Some find it helpful to keep themselves accountable by sharing their resolutions on social media. If you do so, be prepared for unsolicited advice from distant connections.

Photo by bruce mars

In the December 2022 Healthy Minds Monthly poll conducted by the American Psychiatric Association (APA), more people (25%) reported that they anticipated experiencing more stress in the new year compared to the same poll from December 2021. Also up from last year’s poll was the number of people surveyed (29%) who said they would adopt new year’s resolutions related to their mental health.

A breakdown of the more popular ones among these resolutions showed that the top three resolutions were:

1st       Exercise more             (68%)              

2nd       Meditate                      (45%)

3rd        See a therapist           (38%)

 24% said that a source of anxiety about 2023 was keeping their New Year’s resolutions!

Changing the way we do things can lead us to achieving what we have in mind whether we call them resolutions or by any other name. Those changes involve gaining an understanding of our comfort zones we tend to revert to. The interruption of behavioral cycles that have previously interfered in allowing us to move forward is an integral part of achieving these goals and succeeding in our new year’s resolutions for 2023 and the years ahead.

Best wishes on all your journeys in the coming year!

What are PANS and PANDAS? Origins, Clinical Diagnosis and Treatment

At Sky Psychiatry. we have heard frequent questions from clinicians, patients and parents about the role of infectious diseases in mental health symptoms. I aim to give you a better understanding of these disorders which you may have heard of as well.

In 1998, Dr. Susan Swedo and colleagues at the National Institute of Mental Health (NIMH) published the first historical description of the disorder called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection).

This characterization arose from an initial broader series of clinical cases in which OCD symptoms were thought to be related to Sydenham’s Chorea with respect to etiologic/causative agents. These cases were preceded by a bacterial or viral infection (such as influenza, varicella and Group A streptococcal pharyngitis). This initial, broader series was described as "Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder (PITAND).” The cases associated with the onset of OCD symptoms following Group A Streptococcal infection became the specific case-series for which the term PANDAS was identified.

The PANDAS diagnostic criteria include the presence of OCD or tic disorder, prepubertal onset of symptoms, acute symptom onset and episodic course of symptoms, temporal association between Group A streptococcal infection and symptom onset/exacerbations and association with neurological abnormalities such as motoric hyperactivity and choreiform movements.

One of the clinical challenges in connecting Group A streptococcal infection with the onset of PANDAS is that the initial streptococcal infection may have occurred months prior to the onset of symptoms in which case laboratory testing for active bacterial infection and antibody titers would not be as helpful. Since Group A streptococcal infections are quite a common finding among school-age children, the converse is also a clinical challenge when positive cultures and high antibody titers may be wholly unrelated to the symptoms of neuropsychiatric illness.

There has also been difficulty in making a distinction between the acute onset pattern of tics in the PANDAS subgroup versus the “non-PANDAS” subgroup of tic disorders.

Key patterns to consider include "acute and dramatic symptom onset."

PANDAS criteria modifications to exclude a requirement for specific etiologic factors and to clarify the initial clinical presentation, provide a basis for the diagnostic criteria of PANS.

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is broader in its characterization than PANDAS such that it includes post-pubertal onset of symptoms and also includes disorders without an apparent environmental precipitant or without immune dysfunction.

PANS criteria include the "abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake." An additional criterion for patients is the "concurrent presence of at least two additional neuropsychiatric symptoms with similarly severe and acute onset."

These additional symptoms may include anxiety; emotional lability and depression; aggression, irritability and oppositional behaviours; behavioural (developmental) regression; sudden deterioration school performance or learning abilities; sensory and motor abnormalities; or somatic signs and symptoms.

The symptoms of PANS are not better explained by a known neurologic or medical disorder such as Sydenham’s Chorea, Systemic Lupus Erythematosus or Tourette’s Disorder.

Does the presence of OCD symptoms or tics with a history of prior Group A streptococcal infection mean that the diagnosis of PANDAS should be made?

Streptococcal infections are common among children of school-going age and may simply be coincidental to the subsequent occurrence of OCD symptoms or tics. Specific PANDAS criteria should be considered in the diagnosis of PANDAS.  

What are some relevant evaluations/laboratory investigations in PANS/PANDAS?

Testing for streptococcal infection with a rapid test and culture of a throat swab is recommended.

In addition, a rising titer of a specific form of antibody known as Anti-Streptolysin O (ASO) between the first 1-2 weeks post-infection and 4-8 weeks after infection indicates support for a streptococcal trigger for clinical symptoms. A single ASO tier is of limited benefit.

Other investigations may be clinically indicated for specific symptoms concerns and to rule out other possible immune-mediated illness such as Lyme disease, Systemic Lupus Erythematosus, Sydenham’s Chorea and Celiac Disease

Is there a role for Penicillin or other antibiotics in PANS/PANDAS treatment?

PANDAS is thought to be caused by an auto-immune response (development of autoantibodies in response to a streptococcal infection).

Penicillin treats active streptococcal infection but does not directly reduce the levels of the auto-immune response.

There is no clear evidence supporting the role of penicillin in the absence of active streptococcal infection.

What are PANS/PANDAS treatment modalities?

Mainstays of treatment include the use of symptom-specific medications and psychotherapies targeting OCD symptoms (SSRI-type of medications, CBT) and/or tics (Alpha-agonists, anti-dopaminergic medications, dopamine modulating agents, Habit Reversal Training).

In moderate/severe illness, there may be justification for a role of brief NSAID (non-steroidal anti-inflammatory drugs) and/or corticosteroid (to reduce the auto-immune response) treatment, the use of intravenous immunoglobulin (IVIG, by providing anti-idiotypic antibodies to absorb and reduce the auto-immune response) and/or plasmapheresis (to reduce the auto-immune response by eliminating the autoantibodies).

Although the treatment modalities mentioned above have been thought to have been associated with clinical benefit in PANS/PANDAS, a recent systematic review study examined the impact of anti-inflammatory, antibacterial and immunomodulatory treatment in children with PANS. The study outcomes indicated no clear evidence of benefit of these modalities.

What is the prognosis for PANS/PANDAS?

There have been limited longitudinal follow-up studies of these PANS/PANDAS patient cohorts, In one such study, a majority of patients who have achieved improvement of symptoms with treatment have had a relapsing pattern of symptom occurrence and full remission has been rare.

-       Dr. Waqar Waheed, Editor, The Sky Room blog

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Sky Psychiatry Opens February 1, 2021

Sky Psychiatry @ Telus Sky

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