The educational experiences of autistic children with and without extreme demand avoidance behaviours

Figures & data

Table 1. Background data on parent respondents from the AUT, AUT-EDA and AUT-PDA groups.

		Group
		AUT (n = 63)	AUT-EDA (n = 91)	AUT-PDA (n = 57)
Gender	Female	62 (98%)	88 (97%)	54 (95%)
	Male	1 (2%)	3 (3%)	3 (5%)
Age (in years)	Median	44.5	43.2	43.8
	Range	30.1–65.9	29.8–80.2	27.4–69.2
Relationship to child	Biological parent	60 (95%)	87 (96%)	53 (93%)
	Adoptive parent	2 (3%)	4 (4%)	1 (2%)
	Grandparent	1 (2%)	0	3 (5%)

Table 2. Child characteristics in the AUT, AUT-EDA and AUT-PDA groups.

		Group
		AUT (n = 63)	AUT-EDA (n = 91)	AUT-PDA (n = 57)	Group Comparison
Gender	Female	16 (25%)	27 (30%)	17 (30%)	χ^2(4, N = 211)  = 1.08, p = .90
	Male	46 (73%)	61 (67%)	39 (68%)
	Other gender identity	1 (2%)	3 (3%)	1 (2%)
Age (in years)	Mean (SD)	10.34 (3.70)	10.58 (3.56)	9.70 (2.88)	F(2, 207) = 1.14, p = .32
	Range	5–18	4–18	4–16
Parent reported level of cognitive ability	Above average	23 (37%)	42 (46%)	28 (49%)	χ^2(6, N = 211) = 7.32, p = .30
	Average	22 (35%)	30 (33%)	18 (32%)
	Mild or moderate intellectual disability	12 (19%)	15 (16%)	11 (19%)
	Severe intellectual disability	6 (10%)	4 (4%)	0
Parent reported use of spoken language	Completely typical	14 (22%)	22 (24%)	21 (37%)	χ^2(6, N = 211) = 10.84, p = .09
	Difficulties with pragmatic or social language	26 (41%)	43 (47%)	29 (51%)
	Difficulties expressing needs using spoken language	10 (16%)	9 (10%)	3 (5%)
	Other^a	13 (21%)	17 (19%)	4 (7%)
Parent reported co-occurring diagnoses	ADHD^b	13 (21%)	28 (31%)	23 (40%)
	Dyslexia	3 (5%)	6 (7%)	3 (5%)
	Dyspraxia	9 (14%)	12 (13%)	6 (11%)
	Oppositional Defiance Disorder	1 (2%)	8 (9%)	3 (5%)
	Conduct Disorder	0	2 (2%)	0
	Anxiety	12 (19%)	23 (25%)	9 (16%)
	Social, Emotional, Mental Health Difficulties	6 (10%)	21 (23%)	8 (14%)
	Other^c	12 (19%)	16 (18%)	6 (11%)

Notes: ^a Examples of descriptions of language use listed in the ‘other’ category included selective mutism, using overly formal language and using language that was not age appropriate; ^b Attention Deficit Hyperactivity Disorder; ^cExamples of diagnoses listed in the ‘other’ category included Sensory Processing Disorder, attachment disorder, selective mutism and post-traumatic stress disorder. Due to rounding, some total percentages exceed and some fall below 100%.

Table 3. Behavioural characteristics of the AUT, AUT-EDA and AUT-PDA groups.

		Group
		AUT Median Range	AUT-EDA Median Range	AUT-PDA Median Range	Group Differences
EDA-Q^a Total Score	n Median Range	63 35.00 6–49	91 59.00 45–75	57 60.00 22–74	H(2) = 120.28 p < .001
					AUT < AUT-EDA = AUT-PDA
SDQ^b Total Difficulties score	n Median Range	62^d 22.00 8–33	91 26.00 16–37	57 26.00 15–37	H(2) = 32.00 p < .001
					AUT < AUT-EDA = AUT-PDA
SRS-2^c T-Score	n Median Range	63 82.00 57–90	91 88.00 62–90	57 84.00 51–90	H(2) = 15.76 p < .001 AUT = AUT-PDA < AUT-EDA

Notes: ^aEDA-Q = Extreme Demand Avoidance Questionnaire (O’Nions et al. 2014); ^bSDQ = Strengths and Difficulties Questionnaire (Goodman 1997); ^cSRS-2 = Social Responsiveness Scale – 2nd Edition (Constantino and Gruber 2012); ^dOne participant did not complete this section.

Table 4. Details on the children’s educational placements in the AUT, AUT-EDA and AUT-PDA groups.

		Group
		AUT (n = 63)	AUT-EDA (n = 87)	AUT-PDA (n = 55)
Region of the UK in which the child was educated	North of England	9 (14%)	15 (17%)	5 (9%)
	East of England	13 (21%)	14 (16%)	9 (16%)
	Midlands	9 (14%)	18 (21%)	11 (20%)
	South of England	32 (51%)	34 (39%)	26 (47%)
	Scotland	0	3 (3%)	4 (7%)
	Wales	0	3 (3%)	0
		AUT (n = 63)	EDA (n = 91)	PDA (n = 57)	Group Comparisons
Type of education provision	Mainstream School No additional support	21 (33%)	21 (23%)	7 (12%)	χ^2(20, N = 211) = 23.46, p = .27
	Mainstream class with a support assistant	16 (25%)	21 (23%)	12 (21%)
	Mainstream school with an autism resource base	3 (5%)	2 (2%)	5 (9%)
	Mainstream school with a non-autism specialist resource base	1 (2%)	4 (4%)	1 (2%)
	Special needs or autism resource base in general special school	1 (2%)	2 (2%)	0 (0%)
	General special school	6 (10%)	4 (4%)	6 (11%)
	Autism special school	7 (11%)	8 (9%)	6 (11%)
	Currently not in education	1 (2%)	5 (5%)	4 (7%)
	At home with no professional support	4 (6%)	6 (7%)	6 (11%)
	At home with professionals who come into the home	1 (2%)	3 (3%)	2 (4%)
	Other	2 (3%)	15 (17%)	8 (14%)
Nature of formal educational support	An EHCP^a	27 (43%)	42 (46%)	29 (51%)	χ^2(10, N = 211) = 4.82, p = .90
	A Statement of SEN^b	7 (11%)	11 (12%)	9 (16%)
	School Action^c	2 (3%)	1 (1%)	1 (2%)
	School Action Plus^d	5 (8%)	6 (7%)	4 (7%)
	None of the above	19 (30%)	27 (30%)	10 (18%)
	Unknown	3 (5%)	4 (4%)	4 (7%)

Notes: ^aEducation, Health and Care Plan – a legal document issued by Local Authorities in the UK, which identifies a child or young person’s additional needs and the support required to meet those needs; ^bA statement of special educational needs is a legal document issued by Local Authorities in the UK until 2014 and still available in Wales. It outlines the provision needed to meet a child or young person’s special educational needs; ^cSchool Action support is support provided within a mainstream UK school to meet children’s special educational needs without additional funding or support from the Local Authority; ^dAt School Action Plus level, support is still provided by the school but specialist advice is sought from the Local Authority (e.g. from a Local Authority Specialist Teacher). Due to rounding, some total percentages fall below 100%.

Table 5. Information ahout the children’s experiences of exclusion for the AUT, AUT-EDA and AUT-PDA groups (note: not all participants provided this information).

	Group
	AUT	AUT-EDA	AUT-PDA
Informal exclusions (n, %)	21 (43%)	48 (41%)	35 (67%)
Fixed term exclusions (n, %)	12 (20%)	30 (34%)	22 (40%)

Table 6. Information about the children’s behaviour that challenges in their most difficult term at school (as identified by parents), for the AUT, AUT-EDA and AUT-PDA groups.^a

	Group
	AUT n = 63 Median (Range)	AUT-EDA n = 91 Median (Range)	AUT-PDA n = 55 Median (Range)	Group Differences
Refusal to attend	2 (0-4)	3 (0-4)	3 (0-4)	H(2) = 18.32, p < .001 AUT < AUT-EDA = AUT-PDA
Refusal to comply	2 (0-4)	3 (0-4)	3 (0-4)	H(2) = 23.52, p < .001 AUT < AUT-EDA < AUT-PDA
Hurting or attempting to hurt self	1 (0-4)	2 (0-4)	2 (0-4)	H(2) = 15.17, p = .001 AUT < AUT-EDA = AUT-PDA
Hurting or attempting to hurt pupils	1 (0-4)	1 (0-4)	2 (0-4)	H(2) = 13.99, p = .001 AUT = AUT-EDA < AUT-PDA
Hurting or attempting to hurt staff	0 (0-4)	0 (0-4)	2 (0-4)	H(2) = 17.81, p < .001 AUT = AUT-EDA < AUT-PDA
Leaving or attempting to leave the classroom	1 (0-4)	3 (0-4)	3 (0-4)	H(2) = 24.30, p = <.001 AUT < AUT-EDA < AUT-PDA
Leaving or attempting to leave the school site	0 (0-3)	0 (0-4)	2 (0-4)	H(2) = 33.86, p < .001 AUT < AUT-EDA < AUT-PDA

^a Parents rated their child’s behaviour on a Likert scale ranging from 0 = Never to 4 = Always.

Table 7. Information about the support from professionals that parents in the AUT, AUT-EDA and AUT-PDA groups found most helpful. The three most commonly reported professionals are shown here. More detail is available in supplementary material.

	Group
Category	AUT	AUT-EDA	AUT-PDA	Total	Illustrative Quote
Access to diagnosis	14	22	14	49	‘The clinical psychologist ensured that my child received the correct diagnosis’ (AUT-EDA)
Understanding and helping others understand EDA behaviours	12	17	11	40	‘SALT was understanding and gave me an insight into why things happen.’ (AUT)
Practical strategies	18	10	10	38	‘The educational psychologist told the school about helpful strategies’ (AUT)

Figure 1. Themes identified in parents’ responses to the open survey question.

O’Nions, E., P. Christie, J. Gould, E. Viding, and F. Happe. 2014. “Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): Preliminary Observations on a Trait Measure for Pathological Demand Avoidance.” Journal of Child Psychology and Psychiatry 55 (7): 758–768. doi:10.1111/jcpp.12149.

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Goodman, R. 1997. “The Strengths and Difficulties Questionnaire: A Research Note.” Journal of Child Psychology and Psychiatry 38: 581–586.

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Constantino, J. N., and C. P. Gruber. 2012. Social Responsiveness Scale. 2nd ed. Los Angeles, CA: Western Psychological Services.

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