All parents care and sometimes worry about their children’s health, happiness, and general well-being, but parents of children with autism spectrum disorder (ASD) or other developmental disabilities often make extraordinary efforts to ensure that their sons and daughters are safe both inside and outside the home.
About 1 in 68 children are diagnosed with autism spectrum disorder (ASD). ASD is reported to occur in all racial, ethnic, and socioeconomic groups. The disorder is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189). Studies in Asia, Europe, Africa, and North America have identified individuals with ASD with an average prevalence of between 1% and 2%.
Studies have shown that among identical twins, if one child has ASD then there is a high chance of the other twin having the disorder. In non-identical twins, if one child has ASD the chance of the other having the disorder is likely but not as high. Parents who have a child with ASD have a 2%–18% chance of having a second child affected by the disorder. In addition, children born to older parents are at a higher risk for having ASD.
Until recently, autism was rarely detected before children reached the age of three. This is not surprising, as autism is a relatively uncommon condition with subtle symptoms. In addition, no specialised screening tool or method exists for detecting the disease. Most primary health care professionals receive limited training in the detection of autism in toddlers, and may not have connections with specialist diagnostic clinics.
However, the earlier a diagnosis can be made, the earlier intervention can be implemented and family stress reduced. In addition, early professional recognition of parental concerns may prevent secondary difficulties from developing. The problem is to determine what counts as a cost-effective method of detecting the early signs of this condition.
There are a number of early symptoms that can be considered red flags. Parents of young children should be aware of toddlers who are not at least babbling and pointing by age one and have not spoken a single word by 16 months or a two-word phrase by age two. Other concerning signs would be children who do not respond to their name, experience a loss of language or social skills, have poor eye contact, do not smile, or have a lack of social responsiveness.
Behavioural signs that could act as red flags would be excessive lining up of toys or objects, impaired ability to make friends, inability to initiate or sustain a conversation, absence or impaired imagination and social play, and unusual or repetitive use of language. Children may have restricted pattern of interest in certain things that they focus intensely on, and they may become preoccupied with certain objects or subjects and have an inflexible adherence to specific routines or rituals.
Children may appear disinterested or unaware of other people or what’s going on around them and prefer not to be touched, held, or cuddled. They may have difficulty communicating needs or desires. They may also have difficulty adapting to any changes in schedule or environment (for example, throws a tantrum if the furniture is rearranged or bedtime is at a different time than usual).
Urgent action is recommended if a child has had a period of normal development and then later regresses. Parents should contact their regular health provider as soon as possible if a child is suspected of having ASD.
Many paediatricians and other physicians are not experienced in diagnosing autism or any of the related autism spectrum disorders (ASDs). It is recommended that parents visit a child psychiatrist whenever they feel that their child’s symptoms should be checked. ASD varies widely in severity and symptoms and may go unrecognised, especially in mildly affected children when it is masked by more debilitating handicaps. Subsequently, the data concerning autism is misleading because many cases are presumably left undiagnosed.
Presently, we do not have a medical test that can diagnose autism. Instead, specially trained child psychiatrists and psychologists administer autism-specific behavioural evaluations.
Often parents are the first to notice that their child is showing unusual behaviours, such as failing to make eye contact, not responding to his or her name, or playing with toys in unusual, repetitive ways.
The Modified Checklist of Autism in Toddlers (M-CHAT) is a list of informative questions, the answers of which can indicate whether he or she should be further evaluated by a specialist, such as a developmental paediatrician, psychiatrist, or psychologist.
This kind of quick screening is available online for free on many websites. However, the diagnostic criteria for autism agreed upon by most authorities are more consistent. The accepted signs and symptoms are as follows: severe abnormality of reciprocal social relatedness, severe abnormality of communication development (including language), restricted or repetitive behaviour and patterns of behaviour, interests, activities and imagination, and early onset (before the age of three to five). Many authors would also consider abnormal responses to sensory stimuli as additional criteria.
The diagnostic criteria for diagnosing autism can be broken down into a set of categories.
Among the first criteria is a persistent deficit in social communication and social interaction across multiple contexts. This may include deficits in social-emotional reciprocity, ranging, for example, from an abnormal social approach and failure of normal back and forth conversation to reduced sharing of interests, emotions, or the failure to initiate or respond to social interactions.
These deficits may also be in nonverbal communicative behaviours used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication to abnormalities in eye contact and body-language or deficits in understanding and use of gestures to a total lack of facial expression and nonverbal communication. Deficits may occur in developing, maintaining and understanding relationships, ranging, for example, from difficulties adjusting behaviour to suit various social contexts to difficulties in sharing imaginative play or in making friends to the absence of interest in peers.
The second criteria can be categorised as restricted, repetitive patterns of behaviour, interests, or activities. This can be manifested in stereotyped or repetitive motor movements, use of objects, or speech (for example, simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
It can also be made apparent by the insistence on sameness, inflexible adherence to routines, or ritualised patterns of verbal or nonverbal behaviour (for example, extreme distress at small changes, difficulty with transitions, rigid thinking patterns, greeting rituals, or the need to take the same route or eat the same food everyday). Another form of the second criteria can be found in highly restricted, fixated interests that are abnormal in intensity or focus (for example, a strong attachment to or preoccupation with unusual objects and excessively circumscribed or preservative interests).
And finally, the second criteria can also be manifested in hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment (for example, apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, and visual fascination with lights movement).
The third set of criteria stipulates that symptoms must be present in the early developmental period, but may not become fully apparent until social demands exceed limited capacities, or may be masked by learned strategies later in life.
The fourth set of criteria clarifies that symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
In the final set of criteria, it is noted that these irregularities frequently co-occur with but are not necessarily features of intellectual disability (intellectual developmental disorder) or global developmental delay. To make diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Early diagnosis and treatment helps young children with autism develop to their full potential. The primary goal of treatment is to improve the overall ability of the child to function.
Symptoms and behaviours of autism can combine in many ways and vary in severity. Also, individual symptoms and behaviours often change over time. For these reasons, treatment strategies are tailored to individual needs and available family resources. But in general children with autism respond best to highly structured and specialised treatment.
Intervention can involve behavioural treatments, medicines, or both. Many people with autism have additional medical conditions, such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning, and related behaviours.
Early intensive behavioural intervention involves a child’s entire family working closely with a team of professionals. In some early intervention programmes, therapists come into the home to deliver services. This can include parent training, which involves the parent leading therapy sessions under the supervision of the therapist. Other programmes deliver therapy in a specialised centre, classroom, or preschool.
In box 3 we will show the features that should be present in any intervention program for autism and other developmental disorders.
There are a number of features that parents should look for in intervention programmes in order to determine whether they are qualified or not. In a good programme, the child should receive structured, therapeutic activities for at least 25 hours per week. The programme should feature highly trained therapists and/or teachers that carry out the intervention. Well-trained paraprofessionals may assist with the intervention under the supervision of an experienced professional with expertise in autism therapy.
The therapy is guided by specific and well-defined learning objectives, and the child’s progress in meeting these objectives is regularly evaluated and recorded. Intervention should also focus on the core areas affected by autism. These include social skills, language, communication, imitation, play skills, daily living, and motor skills.
The programme should provide the child with opportunities to interact with other peers. It should also actively engage parents in the intervention, both in decision making and the delivery of treatment.
Therapists in the programme should make clear their respect for the unique needs, values, and perspectives of the child and his or her family. The programme should involve a multidisciplinary team that includes, as needed, a physician, speech-language pathologist, and occupational therapist.
From the above mentioned criteria of a good therapeutic programme, it is made clear that it takes a lot of time, energy, and money. This causes a lot of pressures on the family, especially mothers, which might cause the development of depression and other stress related disorders among mothers of autistic children
The Egyptian government, through the General Secretariat of Mental Health and Addiction Treatment (GSMHAT), tries to provide help for both children and their families through child psychiatry clinics in its hospitals all over the country. This includes mental health clinics in the following hospitals: Al Abbaseya, Helwan, Al Mamoura (Alexandria), Al Khanka, Banha, Port Said, Demira (Dakahleyya), Beni Suef, Minya, and Assiut.
These hospitals provide assessment and medication for all children, but only three of them provide skills for development interventions in their autism centres. These three are Al Abbaseya Hospital in Cairo, Al Mamoura hospital in Alexandria, and Minya Hospital in Minya governorate.
Putting into consideration the prevalent number of cases of ASD, it is clear that these centres are a far cry from the actual demand, and most of intervention is carried out by private centres. This creates a space where malpractice can occur or non-professionals can play the role of therapist in the process.
Therefore, GSMHAT initiated a hotline to accept and answer all the questions regarding autism and other mental health problems. The hotline is open Sunday through Thursday, 12pm to 4pm, and a trained psychiatrist takes calls from all over the country on the above related issues. The hotline’s number is 08008880700 and parents can call free of charge from a landline phone. The creation of the hotline is an attempt to remove the mental health stigma in society and provide people with a direct channel through which they can learn more about mental health-related issues.
There are many things parents can do to help children with autism overcome their challenges. But it’s also important to make sure you get the support you need. When you’re looking after a child with autism, taking care of yourself is not an act of selfishness—it’s a necessity.