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Antolini, G.;  Colizzi, M. The COVID-19 and Autism-Spectrum Experience (CASE) Parent Survey. Encyclopedia. Available online: https://encyclopedia.pub/entry/33139 (accessed on 22 June 2024).
Antolini G,  Colizzi M. The COVID-19 and Autism-Spectrum Experience (CASE) Parent Survey. Encyclopedia. Available at: https://encyclopedia.pub/entry/33139. Accessed June 22, 2024.
Antolini, Giulia, Marco Colizzi. "The COVID-19 and Autism-Spectrum Experience (CASE) Parent Survey" Encyclopedia, https://encyclopedia.pub/entry/33139 (accessed June 22, 2024).
Antolini, G., & Colizzi, M. (2022, November 06). The COVID-19 and Autism-Spectrum Experience (CASE) Parent Survey. In Encyclopedia. https://encyclopedia.pub/entry/33139
Antolini, Giulia and Marco Colizzi. "The COVID-19 and Autism-Spectrum Experience (CASE) Parent Survey." Encyclopedia. Web. 06 November, 2022.
The COVID-19 and Autism-Spectrum Experience (CASE) Parent Survey
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The COVID-19 outbreak represented a challenging period, especially for people suffering from pre-existing mental health related issues. Individuals with Autism Spectrum Disorders (ASD) are among this patient population and thus particularly at risk due to their vulnerability and difficulties with adapting to changes and complex situations. The CASE 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 ASD. 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.

COVID-19 neurodevelopment neurodevelopmental disorders autism spectrum disorder child and adolescent psychiatry mental health prevention

1. 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.

2. Main Study Findings

The conducted study aimed at assessing the impact of the COVID-19 outbreak on ASD individuals' wellbeing and narratively characterizing their needs as well as their caregivers' through an online parent survey, investigating their children’s socio-demographic and clinical characteristics.

The mean age of ASD children was 13 years and the majority of them were living in married or cohabiting couples families. Additionally, most of them had at least one sibling and one out of every 10 siblings reported a diagnosis of Neurodevelopmental Disorder. Most children were also receiving private therapy and their parents were members of autism advocacy and family support networks. The COVID-19 outbreak resulted in a challenging period for most families, with increased difficulties in managing daily activities (especially free time and structured activities), and a proportion of children presenting with more intense and more frequent behavior problems. Behavior problems predating the COVID-19 outbreak predicted a higher risk of more intense and more frequent disruptive behavior, in some cases requiring emergency contacts with the Neuropsychiatrist or an access to the A&E. Even though ASD children were receiving different types of support, parents and guardians reported a number of needs, including receiving more healthcare support and interventions to deal with a potentially disruptive quarantine.

3. CASE Parent Survey

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?

4. Conclusions

The present survey indicated that the COVID-19 outbreak has resulted in a challenging period for ASD individuals and their families, with increased difficulties in managing daily activities and children presenting with more behavioral problems.

References

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