A survey of 315 autistic persons and parents of autistic children in Quebec found that during the COVID-19 pandemic: - Less than 40% reported that community or healthcare organizations provided accessible COVID-19 information and adapted services. - Over 60% of parents reported a lack of adapted online education resources and equipment for remote learning. - Reported stress levels were much higher than usual populations, with autistic persons and parents in larger cities more likely to experience stress. - A lack of adapted services was associated with higher stress levels for autistic persons. Social supports helped buffer stress for autistic persons.

1. Community Supports for Autistic Persons
and their Caregivers during the COVID-
19 Pandemic in Québec
Survey Results
Valderrama A. , Lajoie X., Kraus de Camargo O., Armstrong M., Luizar-Obregon A.
Presenter: Olaf Kraus de Camargo, @DevPeds

2. When –What –Who
§ 4 weeks in September 2020
§ 4-minute online survey
§ 315 People with disabilities and their caregivers in Québec

3. We asked about:
§ Services
§ Accessibility of information
§ Accessibility of health care
§ Special education supports for children
§ Delivery services
§ Social supports
§ Stress level

4. Respondents - ASD
§ Autistic persons 34
§ Parents of autistic persons 170

5. Accessibility of Information
§ Do community organizations provide you with information about
COVID-19 adapted to your needs? (n = 27)
40.8
59.2
0
10
20
30
40
50
60
70
80
90
100
Autistic Persons
Yes No
percentages

6. Accessibility of Information
§ Do health care organizations provide you with information about
COVID-19 that is tailored to your needs? (n = 27)
44.4
55.6
0
10
20
30
40
50
60
70
80
90
100
Autistic Persons
Yes No
percentages

7. Accessibility of Information
§ Do community or health organizations provide you with
adapted/accessible information about COVID-19? (n = 132)
37.9
62.1
0
10
20
30
40
50
60
70
80
90
100
Parents
Yes No
percentages

8. Accessibility of Health Care
§ Do health organizations provide you with adapted services? (n
parents = 136, n autistics = 27)
38.2 37
61.8 63
0
10
20
30
40
50
60
70
80
90
100
Parents Autistics
Yes No
percentages

9. Special Education
§ Do you have access to adapted online education resources for
children with special needs? (n = 131)
19.8
80.2
0
10
20
30
40
50
60
70
80
90
100
Parents
Yes No
percentages

10. Special Education
§ Is equipment available for people without resources to access online
education? (n = 130)
26.2
73.8
0
10
20
30
40
50
60
70
80
90
100
Parents
Yes No
percentages

11. Delivery Services
§ Do you have access to delivery services (for groceries, hygiene items,
medication)? (n = 133)
45.9
54.1
0
10
20
30
40
50
60
70
80
90
100
Parents
Yes No
percentages

12. Social Supports
§ I have someone I trust and to whom I can turn for advice if I have
problems ( n parents = 128, n autistics = 26)
46.1
42.3
23.4
38.5
30.5
19.2
0
10
20
30
40
50
60
70
80
90
100
Parents Autistics
Social Supports
Always/Often Sometimes Rarely/Never
percentages

13. Social Supports
43.8
53.8
27.3
19.2
28.9 27
0
10
20
30
40
50
60
70
80
90
100
Parents Autistics
Emergency Support
Always/Often Sometimes Rarely/Never
§ There are people I can count on in case of an emergency (n parents =
128, n autistics = 26)
percentages

14. Stress
§ Most of your days (during pandemic) are: (n parents = 128, n autistics
= 26)
21.1
42.3
28.9
15.4
50
42.3
0
10
20
30
40
50
60
70
80
90
100
Parents Autistics
Stress level
not at all/not very stressful a bit stressful extremely stressful
percentages

15. Stress, Services & Supports
§ Stress:
§ 3 categories: “not at all stressful/ not very stressful”, “a bit stressful”, and
“quite a bit stressful/extremely stressful)
§ Services:
§ Set of composite continuous variables, called “Accumulation of non-adapted
services” or ANAS 1-4 (Non adapted healthcare + not home delivery + not
home support + not remote health care)
§ Social Supports:
§ Separated scores into 2 categories,“low level” and “high level” of support

16. Stress x Services
§ Interactions between stress levels and complete lack of adapted
services (ANAS 4) for Autistics were found to be statistically
significant (p = 0.05)
§ Interactions between stress levels and lack of adapted services for
parents indicated that those living in larger centres (Montréal or
Québec City) had a statistically higher probability to higher
stress levels. (p = 0.07)

17. Stress x Social Supports
§ Autistic people showed statistically significant lower stress levels
with higher social supports (p=0.02)

18. Conclusion
1. Autistic People and Parents of Autistic Children experience a
significant lack of adapted services during the pandemic
2. The reported stress levels are much higher than the usual stress
levels reported in the general population
3. The accumulation of lack of adapted services seems to contribute
to an increase in reported stress levels
4. Living in larger centres contributes to higher stress levels
5. Social supports can buffer to a certain extent the stress levels
experienced by autistic people

19. Statements
“I have a lot of difficulty wearing a mask, it makes it excessively difficult to
think, to concentrate, to work. […] At work, the mask is also obligatory, I have
not worked since mid-May because of this new rule. It's disabling not being
able to work with a mask.”
– Autistic person

20. Statements
"We feel alone every day when we are parents of an autistic child.As soon as
there is an external factor like a pandemic, it just adds to the fatigue already
accumulated.”
– Parent of an autistic child– Autistic person

21. Statements
“Isolation has been for our totally Asperger family the best time of our lives.
Returning to work/school is very stressful.”
– Autistic person and parent of an autistic person

22. Q & A Session
Q A
&
ThankYou!