Evaluating Parents’ Concerns, Needs, and Levels of Satisfaction with the Services Provided for ASD Children in Saudi Arabia

Figures & data

Table 1 Characteristics of Children with Autism According to Their Parents (n = 109)

	Characteristics/Responses	No	%
General Characteristics	Age group (years)
	< 4	10	9.2
	4 to less than 6	24	22.0
	6 to less than 8	24	22.0
	8–10	51	46.8
	Gender
	Male	86	78.9
	Female	23	21.1
	Residence
	Central Region	66	60.6
	Eastern Region	32	29.4
	Southern Region	11	10.1
ASD Characteristics	Age at ASD diagnosis (years)
	< 4	72	66.1
	4 to less than 6	25	22.9
	6 to less than 8	9	8.3
	8–10	3	2.8
	Child’s age when autistic behaviors were first noticed
	18 months	38	35.2
	< 4 years	56	51.9
	4 to less than 6 years	10	9.3
	6 to less than 8 years	3	2.8
	8–10 years	1	0.9
	Does the child understand orders and requests?
	Yes	62	56.9
	No	9	8.3
	To some extent	38	34.9
	Does the child respond when his/her name is called?
	Yes	54	49.5
	No	20	18.3
	To some extent	35	32.1
	Does the child have difficulty playing with other children?
	Yes	40	36.7
	No	17	15.6
	To some extent	52	47.7
	Total	109	100.0

Abbreviation: ASD, Autism Spectrum Disorder.

Table 2 Availability and Use of Speech Clinics According to the Parents (n = 109)

Characteristics/Responses	No	%
Does the child visit speech clinics in the caregiver’s city?
Yes	87	79.8
No	22	20.2
Has the child ever visited speech clinics outside his/her city?
Yes	25	22.9
No	84	77.1
Location of the speech clinic visited by the child outside his/her city (n = 25)
Riyadh	8	32.0
Dammam	1	4.0
Mekka	4	16.0
Jeddah	5	20.0
Outside the Kingdom*	4	16.0
Not mentioned	3	12.0
Number of speaking sessions attended
Does not attend	25	22.7
Once a week	17	15.5
Twice a week	49	44.5
Once or twice a week	9	8.2
Once a month	4	3.6
Once or more per month	6	5.5
Total duration of attendance at the SLS
Less than a month	22	20.2
2–6 months	23	21.1
6 months to 1 year	10	9.2
More than one year	54	49.5
Has the child stopped receiving speech language sessions?
Yes	51	46.8
No	58	53.2

Notes: *Egypt, Turkey, Bahrain, and London.

Table 3 Main Reasons for the Children’s Attendance at Speech Language Services (n = 109)

Characteristics/Responses	No	%
Have you noticed your child’s language delay?
Yes	103	94.5
No	2	1.7
To some extent	4	3.8
Have you noticed that your child has no words, or only a few of them?
Yes	90	82.6
No	6	5.5
To some extent	13	11.9
Have you noticed that your child is slow in understanding and comprehending?
Yes	66	60.6
No	10	9.2
To some extent	33	30.3
Have you noticed your child’s weakness in eye contact?
Yes		67.9
No		13.8
To some extent		18.3
Have you noticed your child has difficulty communicating with others?
Yes	83	76.1
No	7	6.4
To some extent	19	17.4
Has your child had behavior problems?
Yes	80	73.4
No	9	8.3
To some extent	20	18.3

Figure 1 Parents’ reasons for letting their children attend speech language sessions outside their cities (n = 25).

Figure 2 Pareto chart ranking the reasons for the discontinuation of the children’s communication sessions (n = 51).

Table 4 Percentage Values of the Reasons for Discontinuing Communication Sessions: Pareto Analysis

Reasons for Discontinuing Communication Sessions	Frequency	Cumulative Value	Cumulative Percentage	% of the Total Number of Reasons	% of the Total Number of Parents
				Pareto Analysis
High session costs	8	8	15.69	33.3%	78%
Need for behavioral sessions first	6	14	27.45
Non-availability of qualified, specialized staff	6	20	39.22
End of the sessions	5	25	49.02
Lack of improvement in the child	5	30	58.82
Lack of specialized centers	4	34	66.67
Language improvements in the child	4	38	74.51
Dependence on home training only	2	40	78.43
Lack of services after the age of 10 years	2	42	82.35	66.7%	22%
Long travel distance	2	44	86.27
Delay in sessions	2	46	90.20
Health issues	2	48	94.12
Changes in the goals of the therapy sessions	1	49	96.08
Refusal of the child	1	50	98.04
Transportation issues	1	51	100.00

Figure 3 Fishbone diagram illustrating the different factors contributing to the end of the children’s communication sessions.

Table 5 Parents’ Levels of Satisfaction with the Speech and Language Services Provided on the Basis of the Characteristics of Children with Autism (n = 109)

Characteristics/Responses	Not Satisfied	Satisfied	To Some Extent	Total	Chi-Square	p value
Age group (years)
< 4	3(10.0)	4(10.0)	3(7.7)	10(9.2)	12.86**	0.046*
4 to less than 6	7(23.3)	10(25.0)	7(17.9)	24(22.0)
6 to less than 8	4(13.3)	15(37.5)	5(12.8)	24(22.0)
8–10	16(53.3)	11(27.5)	24(61.5)	51(46.8)
Gender
Male	27(90.0)	32(80.0)	2(769.2)	86(78.9)	4.439	0.109
Female	3(10.0)	8(20.0)	12(30.8)	23(21.1)
Residence
Central Region	15(50.0)	27(67.5)	24(61.5)	66(60.6)	2.69**	0.58
Eastern Region	124(0.0)	10(25.0)	10(25.6)	32(29.4)
Southern Region	3(10.0)	3(7.5)	5(12.8)	11(10.1)
Age at diagnosis of ASD (years)
< 4	18(60.0)	28(70.0)	26(66.7)	72(66.1)	12.25**	0.05*
4 to less than 6	9(30.0)	4(10.0)	12(30.8)	25(22.9)
6 to less than 8	2(6.7)	6(15.0)	1(2.6)	9(8.3)
8–10	1(3.3)	2(5.0)	0(0.0)	3(2.8)
Child’s age when autistic behaviors were noticed for the first time
18 months	14(46.7)	12(30.8)	12(30.8)	38(35.2)	9.55**	0.298
< 4	13(43.3)	23(59.0)	20(51.3)	56(51.9)
4 to less than 6	2(6.7)	2(5.1)	6(15.4)	10(9.3)
6 to less than 8	0(0.0)	2(5.1)	1(2.6)	3(2.8)
8–10	1(3.3)	0(0.0)	0(0.0)	1(0.9)
Are the communication sessions affected by the child’s autism-related behavior?***
Yes	12(40.0)	15(37.5)	18(46.2)	45(41.3)	4.582	0.33
No	14(46.7)	17(42.5)	10(25.6)	41(37.6)
To some extent	4(13.3)	8(20.0)	11(28.2)	23(21.1)

Notes: *Significant difference (p ≤ 0.05), **Likelihood ratio is used, ***Child’s behavior related to autism: poor eye contact and lack of interest in the session).

Table 6 Parents’ Levels of Satisfaction with the Speech and Language Services Provided on the Basis of the Availability and Use Patterns of Speech Clinics (n = 109)

Characteristics/ Responses	Not Satisfied	Satisfied	To Some Extent	Total	Chi-Square	p value
Does the child receive SLS?
Yes	18(60.0)	34(85.0)	32(82.1)	84(77.1)	6.92	0.031*
No	12(40.0)	6(15.0)	7(17.9)	25(22.9)
Does the child receive SLS in his/her caregiver’s city?
Yes	22(73.3)	33(82.5)	32(82.1)	87(79.8)	1.08	0.58
No	8(26.7)	7(17.5)	7(17.9)	22(20.2)
Has the child ever visited speech clinics outside his/her city?
Yes	5(16.7)	11(27.5)	9(23.1)	25(22.9)	1.14	0.56
No	25(83.3)	29(72.5)	30(76.9)	84(77.1)
Number of speaking sessions attended
Does not attend	11(36.7)	6(15.0)	7(17.9)	24(22.0)	15.86**	0.05*
Once a week	3(10.0)	7(17.5)	7(17.9)	17(15.6)
Twice a week	13(43.3)	19(47.5)	17(43.6)	49(45.0)
Once or twice a week	1(3.3)	6(15.0)	2(5.1)	9(8.3)
Once a month	0(0.0)	0(0.0)	4(10.3)	4(3.7)
Once or more per month	2(6.7)	2(5.0)	2(5.1)	6(5.5)
Total duration of attendance at the SLS
Less than one month	5(16.7)	10(25.0)	7(17.9)	22(20.2)	2.85**	0.86
2–6 months	6(20.0%)	7(17.5)	10(25.6)	23(21.1)
6 months to 1 year	2(6.7)	5(12.5)	3(7.7)	10(9.2)
More than one year	17(56.7)	18(45.0)	19(48.7)	54(49.5)
Have all appointments been attended regularly?
Yes	22(73.3)	31(77.5)	24(61.5)	77(70.6)	6.921**	0.14
No	5(16.7)	4(10.0)	3(7.7)	12(11.0)
To some extent	3(10.0)	51(2.5)	12(30.8)	20(18.3)
Has the child stopped receiving SLS?
Yes	16(53.3)	19(47.5)	16(41.0)	51(46.8)	1.05	0.56
No	14(46.7)	21(52.5)	23(59.0)	58(53.2)
Have the SLS been paused until the behavioral therapy sessions are completed?
Yes	6(20.0)	8(20.0)	11(28.2)	25(22.9)	12.01	0.017*
No	10(33.3)	24(60.0)	23(59.0)	57(52.3)
The child did not attend behavioral therapy sessions.	14(46.7)	8(20.0)	5(12.8)	27(24.8)
Has the child been trained at home using the exercises used in the clinic?
Yes	14(46.7)	24(60.0)	14(35.9)	52(47.7)	11.733	0.019*
No	6(20.0)	6(15.0)	2(5.1)	14(12.8)
To some extent	10(33.3)	10(25.0)	23(59.0)	43(39.4)

Notes: *Significant difference (p ≤ 0.05), **Likelihood ratio is used.

Table 7 Parents’ Levels of Satisfaction with the SLS Received (n = 109)

Characteristics/ Responses	Not Satisfied	Satisfied	To some Extent	Total	Chi-Square	p value
Has the caregiver been provided by the speech pathologist with sufficient information about his/her child’s condition?
Yes	8(26.7)	33(82.5)	18(46.2)	59(54.1)	33.578	< 0.001*
No	13(43.3)	2(5.0)	4(10.3)	19(17.4)
To some extent	9(30.0)	5(12.5)	17(43.6)	31(28.4)
Has the caregiver been provided by the speech pathologist with adequate information about how to train his/her child?
Yes	3(10.0)	31(77.5)	15(38.5)	49(45.0)	40.313	< 0.001*
No	13(43.3)	3(7.5)	4(10.3)	20(18.3)
To some extent	14(46.7)	6(15.0)	20(51.3)	40(36.7)
Has the caregiver been provided with other sources*** of information about his/her child’s condition?
Yes	10(33.3)	23(57.5)	18(46.2)	51(46.8)	4.03	0.133
No	20(66.7)	17(42.5)	21(53.8)	58(53.2)
Does the caregiver think that meeting with other people who are going through the same experiences will help him/her decide on continuing his/her child’s attendance at the communication sessions?
Yes	16(53.3)	36(90.0)	28(71.8)	80(73.4)	11.88	0.003*
No	14(46.7)	4(10.0)	11(28.2)	29(26.6)
Does the caregiver feel frustrated by the difficulty of accessing SLS?
Yes	24(80.0)	12(30.0)	24(61.5)	60(55.0)	18.45	0.001*
No	3(10.0)	16(40.0)	9(23.1)	28(25.7)
To some extent	3(10.0)	12(30.0)	6(15.4)	21(19.3)
Does the caregiver feel respected and supported by his/her child’s speech pathologist?
Yes	4(13.3)	40(100.0)	15(38.5)	59(54.1)	80.21**	< 0.001*
No	9(30.0)	0(0.0)	2(5.1)	11(10.1)
To some extent	17(56.7)	0(0.0)	22(56.4)	39(35.8)
Does the caregiver find improvements in his/her child’s condition after receiving SLS?
Yes	4(13.3)	34(85.0)	15(38.5)	53(48.7)	61.31	< 0.001*
No	16(53.4)	1(2.5)	2(5.1)	19(17.4)
To some extent	10(33.3)	5(12.5)	22(56.4)	37(33.9)

Notes: *Significant difference (p ≤ 0.05), **Likelihood ratio is used, ***Other sources: mobile apps, help websites, or manuals.

Abbreviations: SLPs, Speech language pathologists; SLS, Speech language services.

Table 8 Percentage Values of the Reported Needs by the Parents: Pareto Analysis

Needs of parents	Frequency	Cumulative Value	Cumulative Percentage	% of the Total Number of Needs	% of the Total Number of Parents
				Pareto Analysis
Methods to help their children express their needs and feelings	12	12	28.57	33.3%	79%
Academic and work opportunities	5	17	40.48
Continuous, intensive sessions	4	21	50.00
Reduced session costs	4	25	59.52
Centers for adults with ASD	4	29	69.05
Accessible schools for children with ASD	4	33	78.57
Non-profit specialized centers for children with ASD	3	36	85.71	66.7%	21%
Courses about appropriate communication methods to use with children with ASD	3	39	92.86
Public facilities for entertainment and sports that are suitable for people with ASD	3	42	100.00

Table 9 Percentage Values of the Reported Concerns by the Parents: Pareto Analysis

Reported concerns	Frequency	Cumulative Value	Cumulative Percentage	% of the Total Number of Concerns	% of the Total Number of Parents
				Pareto Analysis
Child growing up with poor language and speech skills	13	13	26.53061	33.3%	80%
Child’s lack of independence	10	23	46.93878
Child’s future	9	32	65.30612
Child’s social acceptance	7	39	79.59184
Child’s social interactions	5	44	89.79592	66.6%	20%
Possibility of child abuse	3	47	95.91837
Not being able to afford session costs	2	49	100

Figure 4 Pareto chart ranking the perceived needs of the parents of children with autism (n = 42).

Figure 5 Pareto chart ranking the concerns of the parents of children with autism (n = 49).

Table 10 Percentage Values of the Reported Difficulties by the Parents: Pareto Analysis

Difficulties	Frequency	Cumulative Value	Cumulative Percentage	% of the Total Number of Difficulties	% of the Total Number of Parents
				Pareto Analysis
High session costs	24	24	27.91	33.3%	78%
Shortage of services	12	36	41.86
Shortage of experienced speech and language therapists	11	47	54.65
Irregular sessions	10	57	66.28
Child’s refusal to attend the sessions	5	62	72.09
Short session durations	5	67	77.91
Child’s lack of progress	5	72	83.72	66.7%	22%
Long travel distance	3	75	87.21
Refusal of the case by the therapist	2	77	89.53
Unavailability of home services	2	79	91.86
Unavailability of services for older children	1	80	93.02
Long waiting time before an appointment	1	81	94.19
Unavailability of group sessions	1	82	95.35
The child speaks in the session but not at home.	1	83	96.51
Unavailability of a therapist who provides services in English	1	84	97.67
Session schedule problems	1	85	98.84
Slow progress	1	86	100.00

Figure 6 Pareto chart ranking the perceived difficulties of the parents of children with autism (n = 86).

Figure 7 Pareto chart ranking the recommendations of the parents of children with autism (n = 86).

Table 11 Percentage Values of the Recommendations Made by the Parents: Pareto Analysis

Recommendations	Frequency	Cumulative Value	Cumulative Percentage	% of the Total Number of Recommendations	% of the Total Number of Parents
				Pareto Analysis
Increase the number of sessions	15	15	30	33.3%	76%
Reduce session costs	13	28	56
Launch new specialized ASD clinics	10	38	76
Teach parents ways to communicate with their children with ASD	6	44	88	66.7%	24%
Give parents goals to work on at home and at school	2	46	92
Consider the psychological states of the child and the caregiver	2	48	96
Work with each child according to his/her own condition	2	50	100