This parent survey was developed by a group of physicians, psychologists, and child life specialists in order to assess the impact of the COVID-19 emergency on children and adolescents with Autism Spectrum Disorder. It consists of 40 questions (20 yes/no questions, 18 multiple choice questions and 2 open-response questions), subdivided into three categories investigating Autism Spectrum Disorder's subjects socio-demographic and clinical characteristics, the impact the COVID-19 outbreak had on their physical and mental wellbeing, and the needs to deal with the ongoing emergency.
This entry is adapted from 10.3390/brainsci10060341
Background
After the Severe Acute Respiratory Syndrome (SARS) Coronavirus outbreak of 2002–2003, the International Health Regulations (IHR) of the World Health Organization (WHO), which had been first adopted in 1969, were revised in 2005 to extend their scope to any public health risk that might affect human health, irrespective of the source. Emphasis was put on the risk that the increasing international travel and trade could facilitate the international spread of disease, requiring a coordinated international response. Since the 2005 IHR adoption, the WHO has formally declared six Public Health Emergencies of International Concern (PHEIC), the latter of which, the 2019 coronavirus disease (COVID-19), is still ongoing [1]. COVID-19 is caused by a newly identified coronavirus which can induce SARS in man (SARS-CoV-2), as a consequence of a probable zoonotic spillover [2], firstly reported in Central China in December 2019 [3]. Due to person-to-person transmission, it has rapidly spread in Europe [4], with northern Italy becoming Europe’s epicenter [5], and USA [6]. As of 1 May 2020, over 3 million cases have been reported worldwide, affecting more than 200 countries.
Since the beginning of the pandemic, most clinical and research efforts have been allocated to advance our understanding of the virus properties and pathogenic armory in order to treat the infection and protect from it [7]. However, according to some research evidence, the COVID-19 pandemic is also unraveling a potential gap in mental health services during emergencies [8]. In particular, the COVID-19 outbreak would result in higher levels of psychological distress among the general population [8] as well as a higher risk or symptom exacerbation among people suffering from a pre-existing mental health condition [9], possibly triggered by concerns about its rapid escalation and global spread [1] as a deadly threat [10]. Furthermore, alarming media reports may unintendedly amplify fear reactions [11], with potential detrimental consequences for people susceptible to negative emotional states. Importantly, the pandemic has required unprecedented measures by national governments including imposing quarantine to citizens [12]. The experience of being quarantined may be negative, as evidence suggests a wide range of long-lasting mental health problems in a substantial proportion of individuals [13]. While there is no strong evidence that any particular demographic factors carry a higher risk of poor psychological outcome following the obligation of home quarantine [13], a pre-existing psychiatric history seems to predict a worse outcome [14] and a higher need for support during quarantine [13].
Among vulnerable populations, young individuals with autism spectrum disorders (ASD) are of particular concern for the impact that the COVID-19 outbreak may have on their wellbeing as well as the specific support they may need to preserve their mental health through the pandemic [15]. ASD are a group of conditions characterized by social communication problems, difficulties with reciprocal social interactions, and unusual patterns of repetitive behavior [16]. Such features are associated with a preference for highly predictable environments, whereas ASD individuals may feel stressed, anxious or confused if unpredictable or complex changes occur [17]. The COVID-19 outbreak has undoubtedly led to a quick-paced and rapidly shifting social situation which may increase ASD individuals’ difficulties.
SOCIO-DEMOGRAPHIC AND CLINICAL CHARACTERISTICS |
Age (years) |
Place of living |
Parenting couple situation - Married/Cohabiting - Separated - Single parent |
Only child - Yes - No |
Number of siblings (if you answer “No” to the previous question) - Insert number |
Siblings diagnosed with Neurodevelopment disorder (Autism spectrum disorder, ADHD, etc.) - Yes - No |
Child receiving private therapy - Yes - No |
Membership in Autism advocacy/family support network - Yes - No |
Child’s language level - Fluent speech - Phrase speech - No phrase speech |
The child was presenting with behavior problems from before COVID-19 - Yes - No |
Pharmacological treatment for behavior problems (if you answer “Yes” to the previous question) - Yes - No |
Comorbid medical conditions - Yes - No |
OPEN-RESPONSE QUESTION |
If yes, please specify |
PSYCHOSOCIAL AND BEHAVIORAL IMPACT OF THE EMERGENCY OUTBREAK |
COVID-19 positivity among nuclear family members - Yes - No |
COVID-19 positivity among extended family members - Yes - No |
Bereavement due to COVID-19 - Yes - No |
Mother’s current working situation - Regularly commuting to work - Smart working - Not working because of COVID-19 - Not working since before COVID-19 |
Father’s current working situation - Regularly commuting to work - Smart working - Not working because of COVID-19 - Not working since before COVID-19 |
Judgement on this period of change and restrictions - Very challenging - Challenging - Not challenging |
Judgement on this period of change and restrictions as compared to before COVID-19 - More challenging - Equally challenging - Less challenging |
Support by Local Healthcare Services since COVID-19 - Daily contacts - Weekly contacts - Twice weekly contacts - No contact |
Usefulness of support by Local Healthcare Services during COVID-19 - Very useful - Useful - Sufficiently useful - Not very useful - Not useful |
Direct school support since COVID-19 - Daily contacts - Weekly contacts - Twice weekly contacts - No contact |
Indirect school support since COVID-19 - Daily contacts - Weekly contacts - Twice weekly contacts - No contact |
Usefulness of school support during COVID-19 - Very useful - Useful - Sufficiently useful - Not very useful - Not useful |
Private therapist support since COVID-19 - Daily contacts - Weekly contacts - Twice weekly contacts - No contact |
Usefulness of private therapist support since COVID-19 - Very useful - Useful - Sufficiently useful - Not very useful - Not useful |
Difficulties in managing the child’s meals since COVID-19 - Yes - No |
Greater difficulties in managing the child’s meals as compared to before COVID-19 - Yes - No |
Difficulties in managing the child’s autonomies since COVID-19 - Yes - No |
Greater difficulties in managing the child’s autonomies as compared to before COVID-19 - Yes - No |
Difficulties in managing the child’s free time since COVID-19 - Yes - No |
Greater difficulties in managing the child’s free time as compared to before COVID-19 - Yes - No |
Difficulties in managing the child’s structured activities since COVID-19 - Yes - No |
Greater difficulties in managing the child’s structured activities as compared to before COVID-19 - Yes - No |
Intensity of the child’s behavior problems as compared to before COVID-19 - More intense - Equally intense - Less intense |
Frequency of the child’s behavior problems as compared to before COVID-19 - More frequent - Equally frequent - Less frequent |
Contacts with the child’s Neuropsychiatrist due to behavioral problems since COVID-19 - Yes - No |
Access to A&E for child’s behavioral problems since COVID-19 - Yes - No |
OPEN-RESPONSE QUESTION |
What could be of help to deal with the COVID-19 emergency? |
This entry is adapted from the peer-reviewed paper 10.3390/brainsci10060341