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Research ArticleOriginal Article
Open Access

Sociodemographic, clinical characteristics, and service utilization of young children diagnosed with autism spectrum disorder at a research center in Saudi Arabia

The road to autism spectrum disorder diagnosis

Abdullah M. Alotaibi, Katelyn A. Craig, Taghreed M. Alshareef, Elham S. AlQathmi, Sarah M. Aman, Hesham M. Aldhalaan and Cheryl L. Oandasan
Saudi Medical Journal August 2021, 42 (8) 878-885; DOI: https://doi.org/10.15537/smj.2021.42.8.20210297
Abdullah M. Alotaibi
From the Department of Applied Behavior Analysis (Alotaibi); from the Center for Autism Research (Craig, AlQathmi, Aman, Aldhalaan); from the Department of Biostatistics, Epidemiology and Scientific Computing (Alshareef); from the Department of Mental Health (Oandasan), King Fahad National Center for Children’s Cancer, Center for Autism Research, King Faisal Specialist Hospital and Research Center, Riyadh, Kingdom of Saudi Arabia.
BCBA
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  • For correspondence: [email protected]
Katelyn A. Craig
From the Department of Applied Behavior Analysis (Alotaibi); from the Center for Autism Research (Craig, AlQathmi, Aman, Aldhalaan); from the Department of Biostatistics, Epidemiology and Scientific Computing (Alshareef); from the Department of Mental Health (Oandasan), King Fahad National Center for Children’s Cancer, Center for Autism Research, King Faisal Specialist Hospital and Research Center, Riyadh, Kingdom of Saudi Arabia.
BCBA
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Taghreed M. Alshareef
From the Department of Applied Behavior Analysis (Alotaibi); from the Center for Autism Research (Craig, AlQathmi, Aman, Aldhalaan); from the Department of Biostatistics, Epidemiology and Scientific Computing (Alshareef); from the Department of Mental Health (Oandasan), King Fahad National Center for Children’s Cancer, Center for Autism Research, King Faisal Specialist Hospital and Research Center, Riyadh, Kingdom of Saudi Arabia.
BSc
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Elham S. AlQathmi
From the Department of Applied Behavior Analysis (Alotaibi); from the Center for Autism Research (Craig, AlQathmi, Aman, Aldhalaan); from the Department of Biostatistics, Epidemiology and Scientific Computing (Alshareef); from the Department of Mental Health (Oandasan), King Fahad National Center for Children’s Cancer, Center for Autism Research, King Faisal Specialist Hospital and Research Center, Riyadh, Kingdom of Saudi Arabia.
BSc
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Sarah M. Aman
From the Department of Applied Behavior Analysis (Alotaibi); from the Center for Autism Research (Craig, AlQathmi, Aman, Aldhalaan); from the Department of Biostatistics, Epidemiology and Scientific Computing (Alshareef); from the Department of Mental Health (Oandasan), King Fahad National Center for Children’s Cancer, Center for Autism Research, King Faisal Specialist Hospital and Research Center, Riyadh, Kingdom of Saudi Arabia.
Dip
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Hesham M. Aldhalaan
From the Department of Applied Behavior Analysis (Alotaibi); from the Center for Autism Research (Craig, AlQathmi, Aman, Aldhalaan); from the Department of Biostatistics, Epidemiology and Scientific Computing (Alshareef); from the Department of Mental Health (Oandasan), King Fahad National Center for Children’s Cancer, Center for Autism Research, King Faisal Specialist Hospital and Research Center, Riyadh, Kingdom of Saudi Arabia.
MD
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Cheryl L. Oandasan
From the Department of Applied Behavior Analysis (Alotaibi); from the Center for Autism Research (Craig, AlQathmi, Aman, Aldhalaan); from the Department of Biostatistics, Epidemiology and Scientific Computing (Alshareef); from the Department of Mental Health (Oandasan), King Fahad National Center for Children’s Cancer, Center for Autism Research, King Faisal Specialist Hospital and Research Center, Riyadh, Kingdom of Saudi Arabia.
MD, FRCPC
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    Figure 1

    - Study design and variables. ASD: autism spectrum disorder, KSA: Kingdom of Saudi Arabia

Tables

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    Table 1

    - Sociodemographic characteristics of ASD sample (N=67).

    Variablesn (%)
    Gender
    Female18 (26.9)
    Male49 (73.1)
    Age (months) at time of clinic visit
    <248 (11.9)
    24-4730 (44.8)
    49-7120 (29.9)
    72-959 (13.4)
    >960 (0)
    Nationality
    Saudi52 (77.6)
    Non-Saudi15 (22.4)
    Area of residence
    Central55 (82.1)
    West3 (4.5)
    North2 (3.0)
    South3 (4.5)
    East4 (6.1)
    Marital status of parents
    Married64 (95.5)
    Separated/divorced2 (3.0)
    Widowed1 (1.5)
    Number of siblings
    None6 (9.0)
    123 (34.3)
    2-432 (47.8)
    5-76 (9.0)
    Parents consanguinity
    Yes25 (37.3)
    No40 (59.7)
    Missing information2 (3.0)
    Consanguinity type (n=25)
    First cousins14 (56.0)
    Second cousins7 (28.0)
    Same tribe4 (16.0)
    Father level of education
    Primary school1 (1.5)
    Intermediate school3 (4.5)
    High school9 (13.4)
    Post-secondary education39 (57.2)
    Master’s or higher10 (14.9)
    Missing information5 (7.5)
    Mother level of education
    Primary school1 (1.5)
    Intermediate school3 (4.9)
    High school15 (22.2)
    Post-secondary education33 (49..6)
    Master’s or higher8 (11.9)
    Missing information7 (10.5)
    • ASD: autism spectrum disorder, PDD: pervasive developmental disorders

    • View popup
    Table 2

    - Clinical characteristics of ASD sample (N=67).

    Variablesn (%)
    Family history
    ASD, PDD17 (25.4)
    Speech delay28 (41.8)
    Intellectual disability15 (22.4)
    Attention-deficit/hyperactivity disorder13 (19.4)
    Psychiatric disability4 (6.0)
    Seizure disorder6 (9.0)
    Down’s syndrome3 (4.5)
    Parent’s initial concerns
    Language delay53 (79.0)
    Social skills delays55 (82.1)
    Stereotypic behavior or restricted repetitive interests31 (46.3)
    Disruptive behavior (hyperactive, agitated,11 (16.4)
    impulsive, aggressive) 
    Inattention and distractibility12 (17.9)
    Self-injurious behavior2 (3.0)
    Cognitive delay0 (0.0)
    Motor delay3 (4.5)
    Other concerns3 (4.5)
    History of language regression
    Yes29 (43.3)
    No31 (46.3)
    Missing data7 (10.4)
    Reported previous diagnoses rceived
    ASD, PDD, Asperger’s syndrome48 (71.6)
    Language delay/language disorder17 (25.4)
    Attention-deficit/hyperactivity disorder12 (17.9)
    Motor delay/motor disorder2 (0.03)
    Global development delay3 (0.04)
    Genetic disorder3 (0.04)
    ASD severity, median (mean±SD)
    ADOS-2 calibrated severity score (CSS), n=657 (6.49±1.59)
    Vineland ABC composite score, n=5362 (61.1±7.81)
    • ASD: autism spectrum disorder, PDD: pervasive developmental disorders, ADOS: autism diagnostic observation schedule

    • View popup
    Table 3

    - Descriptive statistics: service utilization characteristics of ASD sample.

    Variablesn (%)
    Number of previous assesments prior to ASD diagnosis (n=67)
    None11 (16.4)
    128 (41.8)
    217 (25.4)
    33 (4.5)
    ≥41 (1.5)
    Missing data7 (10.6)
    Intervention in previous ASD diagnosis (n=48)
    Medication21 (43.2)
    Alternative treatment7 (14.6)
    Intervention services36 (75.0)
    Intervention in no previous ASD diagnosis (n=19)
    Medication8 (42.1)
    Alternative treatment3 (15.8)
    Intervention services9 (47.4)
    Type of intervention services (n=45) 
    Enrolled in daycare, preschool,20 (44.4)
    kindergarten, school, or special33 (73.3)
    education school8 (17.8)
    Speech therapy7 (15.6)
    Occupational therapy20 (44.4)
    Applied behavior analysis1 (2.3)
    Behavior therapy/training12 (26.7)
    Physiotherapy3 (6.7)
    Special education session 
    Psychology 
    Site of intervention services (n=45) 
    Clinic private/community18 (40.0)
    Clinic - hospital based5 (11.1)
    Home14 (31.1)
    Center23 (51.1)
    School17 (37.8)
    • ASD: autism spectrum disorder

    • View popup
    Table 4

    - Fixed-effects analysis of variance (ANOVA) comparing age of first concern, age of first ASD diagnosis, and time from concern to diagnosis with patient characteristics.

    VariablesAOCAODTTD
    F-ratioP-valueF-ratioP-valueF-ratioP-value
    Number of siblings (n=66)3.24230.0278*1.11760.34870.77620.5116
    Family history (n=66)
    ASD0.21210.64662.20530.14246.29560.0146*
    Speech delay1.16550.31830.30200.74040.37990.6855
    Intellectual disability2.11180.12940.51720.59871.05360.3547
    Attention-deficit/hyperactivity disorder3.11870.05101.92040.15491.42480.2481
    Psychiatric disability2.20880.11812.63510.07950.79450.4562
    Seizure disorder (n=63)2.09590.13170.51980.59721.38000.2593
    Down’s syndrome (n=60)0.00690.93400.00690.93400.65110.4230
    Parent’s initial concerns (n=66)
    Language delay1.11620.29470.00130.97170.00400.9501
    Social skills delays0.88090.35140.26160.61070.52210.4726
    Stereotypic behavior or restricted repetitive interests0.59730.44240.48050.49070.55600.4586
    Disruptive behavior - hyperactive, agitated, impulsive, aggressive0.30480.58284.84500.0313*4.02840.0489*
    Inattention and distractibility0.05830.81000.57700.45021.28310.2615
    Self-injurious behavior11.50570.0012*2.73080.10330.30310.5838
    Motor delay0.62200.43320.12310.72680.00600.9386
    ASD symptom severity
    Vineland ABC composite score (n=52)0.44800.97541.47360.16160.44800.9754
    The autism diagnostic observation schedule calibrated severity scores (n=64)1.43290.21781.98020.08320.95870.4611
    • ↵* p<0.05, ASD: autism spectrum disorder, AOC: age of first concern, AOD: age of first ASD diagnosis, TTD: time from concern to diagnosis

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Saudi Medical Journal: 42 (8)
Saudi Medical Journal
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Sociodemographic, clinical characteristics, and service utilization of young children diagnosed with autism spectrum disorder at a research center in Saudi Arabia
Abdullah M. Alotaibi, Katelyn A. Craig, Taghreed M. Alshareef, Elham S. AlQathmi, Sarah M. Aman, Hesham M. Aldhalaan, Cheryl L. Oandasan
Saudi Medical Journal Aug 2021, 42 (8) 878-885; DOI: 10.15537/smj.2021.42.8.20210297

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Sociodemographic, clinical characteristics, and service utilization of young children diagnosed with autism spectrum disorder at a research center in Saudi Arabia
Abdullah M. Alotaibi, Katelyn A. Craig, Taghreed M. Alshareef, Elham S. AlQathmi, Sarah M. Aman, Hesham M. Aldhalaan, Cheryl L. Oandasan
Saudi Medical Journal Aug 2021, 42 (8) 878-885; DOI: 10.15537/smj.2021.42.8.20210297
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Keywords

  • autism spectrum disorder
  • attention deficit disorder with hyperactivity
  • problem behavior
  • language development disorders
  • intellectual disability

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