Importance of Early Intervention for Autism Spectrum Disorders (ASDs) in Saudi Arabia



Autism spectrum disorders (ASDs) are very complex neurodevelopmental disorders which are characterized by qualitative impairment in three domains of social interaction, communication, and repetitive, stereotyped behaviors. These behaviors can impair the functioning of the individuals as well as their well-being. ASD is a very common disorder as according to Okas (2012) that more than 350.000 Child born with Autism in Saudi Arabia and Egypt. The rise in the prevalence of autism is worldwide. This phenomenon requires higher no of training institutes, teacher’s training and community services. People with disabilities do not get much medical, social or psychological service in Saudi Arabia. The parents are solely responsible for providing their children with assistance. Though in 1962, the Ministry of education established the department of special learning in order to improve the learning and rehabilitation process for three main type of disabilities such as blindness, deafness and mental retardation, unfortunately, autism was ignored as a major form of disability.

Early intervention is crucial in autism because of several reasons. First of all, early interventions have been found to lead the better developmental gains and a significant reduction in Autism symptoms as compared to, late intervention delivery. Moreover, it is also indicated that the period from 12-24 months is important for social and communication development and intervention in this time frame prevent an increasing gap between children with ASD and their developing peers. Thus, early intervention leads towards better social and communication skills.

Autism spectrum disorder impacts the life of the parents as it has been reported in researches that parents of autistic children found to have higher stress rates and have to come across a number of stressors in their daily routine. One main stressor is their child’s inability to express his or her basic needs, that develop extreme frustration among parents. Secondly, they cannot move with their autistic child openly in the community. They restrict themselves and their kids at home, as they feel their children cannot socialize and relate with others. Social withdrawal leads to stress and social isolation from friends and the community. The late intervention to autistic children results in poor socialization that further leads to stress among parents.

There are very few centers for the training of autistic children in Saudi Arabia on both government and Private level and parents encounter extreme problems when it comes to treatment of their children.  In 1999 a single institute was established in Kuwait, which also lagged the appropriate facilities to deal with the Autistic children.  All the autistic children do not have access to the available school that influences them in various ways. In addition to the problems faced by these children in being stigmatized and lack of proper teacher’s training is another issue. Further, they also have a lack of access to the suitable services which further enhances the problem.

Historical Perspective


    Autism spectrum disorder (ASD), is an umbrella term of neurodevelopmental disorders characterized by deficits in communication, social interaction,  and repetitive behavior, are the prominent features observed disorders in childhood (American Psychiatric Association, 2000). According to Centers for Disease Control and Prevention (CDC) on March 27, 2014, 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having ASD (CDC, 2014). In the literature, autism was not a new term rather dramatic changes occur in the name of the disorder, in the past it was viewed differently as in 1908,  The word autism used to consider the subset of schizophrenia who were especially withdrawn and self-absorbed. The Leo Kanner, in 1943 named ASDs as early infantile autism, because the autistic child was intelligent and used to show a desire for loneliness or persistent sameness and their regular routine. A German scientist Hans Asperger (1994) introduces the Asperger’s syndrome term for autistic children because of child lack of interest in social interaction.  The Diagnostic and Statistical Manual of Mental Disorders (DSM) 1980, first time named it "Infantile autism" and separated it from childhood schizophrenia and in 1987 replaced the term with "autism disorder. The federal government (1991) added the autism in the special education category, and special services were served to them, for enhancing their condition. In 1998 The Lancet proved that Vaccine cause autism, in (2000) vaccine manufacture removes thimordal from vaccine to save the child from Autism. The DSM-5 (2013) folds all subcategories of the Autism Spectrum Disorder in one umbrella term. The epidemiology of Autism Spectrum Disorder (ASD) has tremendously increased in the last two decades, but the evidence supports the theory that increasing value might be artifact regarding how autism diagnoses are made, and not demonstrative of a true increase. In 2010, 52 million ASDs were reported, which indicates that there was no clear change occurred in prevalence for ASDs between 1990 and 2010 (Zaroff, & Uhm, 2001). Many pieces of research have been conducting to overcome the ratio of ASDs with the use of case study and early intervention procedure but no significant changes being noticed. To control the extrinsic variables the prevalence of autism can be considered controlled. This reflects greater recognition, with changes in diagnostic practice associated with more trained diagnosticians; broadening of diagnostic criteria to include a spectrum of disorder; a greater willingness by parents and educationalists to accept the label (in part because of entitlement to services); and better recording systems, among other factors (Heiser, Lacoboni, Maeda, Marcus &Mazziotta, 2003). The children with Autism Spectrum disorder need special consideration in every field of life like socialization, self-help and education program that is effective for these children, because of their unique abilities. In recent years, neurobiological, behaviorist, and developmental researchers have emphasized the period of brain development in the first five years of child life because of plasticity and Stimulation, a child had more tendency to learn skills during this time period. The concept of plasticity and stimulation highlight the importance of "Early Intervention" (EI) throughout the world.

Early Intervention (EI)


EI represents the environmental support for the children and their families as well. In the past, there were a lot of myths associated with special children (Neurodevelopmental disorder) and the parents feel humiliation or devalued, therefore to get a support from a professional in order to improve the condition of the children used to be hard. The feeling of shame and guilt were also associated with having such special children. With the passage of time, the awareness regarding Neurodevelopmental disorder and early intervention program facilitate the services for Autistic Children to have a better living style than before. The Early intervention refers to “the group of interventions directed to children age range (0 -6), involving the family and the environment. The basic purpose of these early interventions is to provide the skills necessary for the children developmental growth to overcome the risk of suffering. EI provides the following services e.g. public supervision, self-help, social and communication skills, and collaborative work with parents to fulfill the developmental needs of disabling child. EI objective is to provide services essential for physical, Cognitive, Communication, personal and Social or emotional development, so that these children would be able to spend an independent life under the supervision of their caregiver.

The child with Autism Spectrum Disorder does not only suffer from deterioration in social life rather the family members also have to pass through many crises. They suffer a lot because of Financial stress while taking treatment (e.g. including, therapy session, home treatment, commitments, and responsibilities) and social stress e.g. embracement and guilt for having a disabled child, at child behavior in public, disappointment regarding incurable disorder, and dark future of the child. All these hopeless thinking made the parents socially isolated as they began to consider themselves responsible for child disabilities, which cause an unhealthy relationship in a marital relationship as well. According to the Journal of Family Psychology, parents of autistic children are more likely to have a 9.7 percent chance of getting divorced. The reason behind divorce had multiple reasons like the parents had to fulfill a lot of responsibility and find less time to spend together, such inconsistent schedule cause conflicts in relationship and fluctuations in mood, acceptance of diagnosis cause irritability, and lastly, the financial stress also contributes to increasing the conflicts. Perhaps through a proper counseling and awareness procedure, the conflicts can be sorted out in order to face the circumstance to gain fruitful results. There is the need for EI to control the emotional problem faced by child and parents as well, but as mentioned earlier that in Saudia Arabia EI are lacking. Currently, Saudi Arabia making Plans to organize groups and community for establishing the early intervention institutes for ASDs children. The research organization will also focus on awareness for opening the early intervention institute for diagnoses and treating autism.

Lack of Intervention impact on Autism Spectrum Disorder


  •     Studies suggested that the diagnostic symptoms of ASDs are evident in early infancy, as most families identify and report the symptoms within the first 2 years including the abnormalities in language development, and communication, eye contact, low activity level, and deficits in sensory-motor behaviors (Ozonoff et al., 2008). These early sign and symptoms give a clear understanding of a diagnostic referral to early intervention services. It is evident nowadays if a child is not meeting the developmental stones, the parents should meet a professional who can work with the child and the patents to elicit productive results. The use of screening tools, to identify communication delays (ASD) in children age range 9 to 24 months and questionnaire- tools to assess the risk for ASD in12 months of age are the best source of diagnosis of ASDs.There are many other tools for the assessment of ASD likePsycho educational Profile: Third Edition (PEP-3), Applied Behavioral Analysis (ABA), Hawaii Early Learning Profile (HELP), a picture exchange communication system (PECS) and Early Intensive Behavioral Intervention (EIBI) (Sigafoos, 2000). Evidence indicated that early assessment and interventions can improve IQ, receptive language, socialization, communication adaptive skills, adaptive behavior reciprocal social interaction, in children with ASD. If the focus is not paid to millstones or assessment the treatment would be difficult to bring about positive results. If the early sign and symptoms were identified then through early intervention the condition of the child can be enhanced before getting worst. Early intervention plan consists of applied behavioral analysis, Occupational therapy, speech therapy, social skill therapy, physical therapy, floor time and relational developmental therapy. The lack of early intervention is so harmful to the development of language, social, and communication skills with Autism Spectrum child, which leads them towards social victimization.  A study has been carried out on Asperger’s syndrome to assess the relationship between lack of social skills and social problems and the result indicated that significant risk factor of bullying found to be associated among children with Asperger’s syndrome (Zwaigenbaum et al, 2008). The result indicated that 94% of the children were victimized because of their profound deficit in social skills. This lack of social skills also leads to deficits in self-protective skills, social skills, which increase the risk for bullying and assault. According to recent reports, that 30 % of girls and 10% of boys are sexually abused before they are 18 years old. It was also reported that the children are victimized by their close relative, peer or neighbors. The early intervention helps the child to enhance the social, self-help, and communication skill to live a normal and independent life to some extent. It is also indicated by several studies that high functioning and social adjustment develop insight to face the circumstances by using positive cognitive abilities, and the lack of social or parental support leads them to depression and social impairment. The adults of ASD without intellectual functioning also formulate negative symptoms and depression, which affects the verbal ability and limited the communication. The early intervention skills help the Autism Spectrum child to understand and identify the difference between safe and unsafe situation, behaviors, and places. It is important for Autism Spectrum child to provide them proper early intervention to make them independent in their life in order to face the situation with using their cognitive function either through verbal or nonverbal communication.

References


American Psychiatric Association (2000) Diagnostic and statistical manual of mental health disorders, Text Revision (DSM-IV-TR) (Fourth Edition ed.) Washington.

Okas Journal (2012). Autismin Saudi, Available at http://www.okaz.com.sa/Con.htm.

Fournier, K. A, Hass C. J, Naik, S. K, Lodha, N., Cauraugh, J.H. (2010) Motor coordination in autism spectrum disorders: a synthesis and meta-analysis. Journal of Autism and Developmental Disorders 40: 1227-1240.

Ozonoff, S., Young, G. S., Goldring, S., Greiss, H. L., Herrera, A. M, et al. (2008). Gross motor development, movement abnormalities, and early identification of autism. Autism DevDisord 38: 644-656

Zwaigenbaum, L., Bryson, S., Lord, C., Rogers, S., Carter, A., Carver, L., &Yirmiya, N. (2009). Clinical assessment and management of toddlers with suspected autism spectrum disorder: Insights from studies of high-risk infants. Pediatrics, 123(5), 1383-1391

Zaroff, C. M., Uhm, S.Y., (2001).Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity. Social Psychiatry PsychiatryEpidemiology.published online.