Everything you need to know about the new Dubai Clinical Practice Guideline for Autism Spectrum Disorder in Children and Adolescents

The document is also a step in upgrading health and social services with the aim to ensure people with autism have equal opportunities in education, health, employment, and other spheres of life.

These guidelines impact the care of children from birth to 18 years of age.

What is Autism Spectrum Disorder (ASD)?

ASD refers to a pattern of behaviours characterised by impairments in social interaction and communication, along with restricted interests and repetitive behaviours. The term “spectrum” refers to broad range of behaviours that someone with ASD may exhibit. The clinical presentation of these symptoms vary as do their severity and the intellectual ability of the patient does as well. ASD is a lifelong condition that can affect individual functioning in a number of areas including:

Often, those diagnosed with ASD are also found suffering from certain other ailments. The most common of these conditions are:

What causes ASD?

ASD may be caused by a number of factors, chief among them:

However, the role that each of these factors plays in the etiology of ASD is not fully understood and continues to be the subject of research.

Fact or fiction?

Immunizations cause ASD: They do not. There is no credible evidence for the role of vaccines in the etiology of ASD. Further, this has been extensively studied in high quality research that included more than 1.2 million children from around the world consistently reporting that there is no association between childhood immunisations and ASD. Studies conducted in the US through the Institute of Medicine of the National Academy of Sciences, for instance, reviewed all the evidence and concluded that there is no causal relationship between both thimerosal or measles, mumps, and rubella (MMR) vaccine and autism. Another recent study from Japan, where the MMR vaccine was withdrawn for reasons unrelated to the autism controversy, demonstrated that the incidence of ASD continued to rise in a cohort of children, none of whom received MMR.

A child’s diet can cause ASD: There is no evidence to support this etiology, and special diets for ASD have been studied with no impact on outcomes.

How many people are affected by ASD?

Since there are no comprehensive prevalence studies of ASD in the UAE, estimates are guided by global prevalence data. In the US, the Center for Disease Control and Prevention (CDC) estimated the prevalence of ASD among children at 1 in 59. Other data from the CDC reports average prevalence of ASD as approximately 1 per cent from data obtained from numerous studies conducted in Asia, Europe and North America.

ASD is also reported to be more common among boys than girls. A survey in South Korea, which screened children in schools reported a prevalence of 2.6 per cent (3.7 per cent among boys and 1.5 per cent among girls). Recent numbers for the US and Scandinavia suggest that the prevalence is well above 2 per cent in most countries. The prevalence of ASD in children and adolescents in the Dubai population remains unknown. There is no reason to believe it is any less than that is in Korea and the US.

In the absence of reliable local data, international data has been used to estimate 1 in 68 children at the age of 8 years will be identified with ASD.

Why it’s important to detect ASD early

There are many benefits of early identification and intervention. These include:

Dubai’s Clinical Practice Guidelines list recommendations that will inform all aspects in the ASD pathway including screening, diagnosis, assessment, and treatment for children and adolescents suspected of ASD. Here’s what it has to say.

RECOMMENDATION ONE: IDENTIFICATION OF CHILDREN AND ADOLESCENTS WITH ASD

Early identification, assessment, and diagnosis is recommended to enhance the effectiveness of educational and behavioural interventions. The initial identification of ASD is a three-step process:

What is developmental surveillance?

Developmental surveillance refers to the routine monitoring and tracking of specific developmental milestones and processes. This includes gathering information using reliable standardised instruments, combined with parent and professional observations, and tracking developmental progress. For it to be effective, parents, health professionals, teachers and all care-givers must keep an eagle-eye on the child and raise any suspected red flags as soon as possible.

Most common clinical signs or “red flags” include a delay in communication.  

What does screening mean?

Screening refers to the identification of signs, symptoms and risk factors for a disorder. When concerns about developmental disorders and ASD are raised either as a result of parental reporting or developmental surveillance, screening for ASD should be undertaken.

It is recommended that general developmental screening tests should be administered during standard well-child visits at 9-, 18-, and 30-months. Screening instruments used in suspected ASD are not intended to provide diagnoses, but rather to suggest a need for definitive diagnostic evaluation and intervention planning assessment, when appropriate.

Who should be part of the MDT?

The MDT core members should include:

The MDT should have regular access to the following specialist professionals:

How long should a diagnosis take?

While it could vary, experts in Dubai guidelines say, the MDT should aim to provide the autism diagnostic assessment within 2-4 weeks of receiving referral for children under 6 years old and within 3 months of receiving the referral for older children and adolescents.

The MDT should agree on the timeframe required to conduct the assessments, complete the report, and provide feedback to the family.

As a parent how will I know what’s going on?

An ASD Clinical Care Coordinator/Case Manager must be assigned to each parent/guardian, who should:

When would MDT refer kids to other experts?

Regression in language: Healthcare professionals may consider referral to a paediatrician, paediatric neurologist or child psychiatrist for children older than 3 years with regression in language or at any age with regression in motor skills.

Regression in motor skills: At any age if doctors come across this sort of regression, it is a cause for concern and they may refer the patient to other experts.

What information does the MDT need?

Healthcare professionals and other professionals in the community should obtain parental consent for the referral to the ASD Diagnostic service. The Dubai Autism Guidelines Working Group (DAGWG) recommends the following be completed prior to referral to the MDT Diagnostic assessment:

RECOMMENDATION THREE: DIAGNOSIS OF CHILDREN AND ADOLESCENTS WITH ASD

Only a professional trained in making a clinical assessment can make the diagnosis. Standardized instruments must be used to make a diagnosis based on internationally accepted criteria.

There are two major diagnostic classification systems currently in use:

ICD-11: The World Health Organisation’s International Statistical Classification of Diseases and Related Health Problems, version 11 (ICD11), which was released in June 2018, classifies autism as a spectrum to be more in line with the DSM-5.

DSM-5: This is a standard tool to inform clinical judgment in the diagnosis and classification of ASD. Using it, especially to differentiate between ASD and other psychiatric or developmental disorders, requires training.

Diagnostic criteria must be dependent on age

[Note: While many procedures are needed to complete an accurate diagnostic assessment, obvious and necessary interventions (e.g., behaviour therapy, speech therapy) should not be delayed until other testing is completed.]

Evaluation methods

Both standard and informal assessments are used to gauge developmental challenges faced by children and adolescents.

Standardized assessments are necessary to ascertain the specific symptoms and level of functioning of an individual, in relation to age-related peers.

Formal cognitive/intelligence testing are used to measure both verbal and nonverbal functions.

Informal measures should include modifications to usual procedures as well as careful observation of behaviour in low demand situations. The use of both procedures allows for an estimation of child or adolescent.

Components that lead to a fair evaluation

Diagnostic Evaluation in children and adolescents is a concurrent, multilinear process. Core components, in addition to the medical history, physical examination and assessment:

What are the records a doctor may need for diagnosis?

Screening with information from parents and caregivers

Healthcare professionals should conduct interviews with parents and caregivers when the child has not yet started school. The parent and caregiver interview should include:

These interviews should also have a comprehensive systematic review of:

Medical screening

The components of the medical evaluation should include:

a. Hearing examination: Hearing evaluation should be done prior to the specialist assessment. Case coordinator to ensure referral to audiology services has been made simultaneously at the time of referral to ASD specialist services.

b. Visual examination.

c. Physical examination: A comprehensive physical examination performed by a qualified healthcare professional experienced in ASD is essential to evaluate the general health, monitor physical growth as well as metabolic syndrome screening, signs or symptoms of genetic disorders; congenital anomalies and dysmorphic features; neurocutaneous stigmata; neurofibromatosis or tuberous sclerosis using Wood’s light - a lamp that uses long wave ultraviolet light.

d. Behaviour: A trained and certified specialist in structured assessments should include direct observation of the child or adolescent’s social and communication skills and behaviour.

e. Injury: Healthcare professionals should also be conscious of signs of injury, for example, as a result of self-injurious behaviour or child mistreatment.

f. Dietary and exercise assessment to prevent secondary health issues.

g. Differential diagnosis must be covered during the diagnostic evaluation and should include all commonly associated conditions and/or those known to present as comorbid with ASD.

An individual profile must include:

Diagnostic Assessment Tools

Evidence suggests that ASD-specific Diagnostic Assessment Tools may be used as supplements but do not replace informed clinical judgement. ASD Gold standard assessment tools include Autism Diagnostic Interview (ADI) and Autism Diagnostic Observation (ADO).

Medical and Genetic Investigation: ASD can be associated with a wide range of underlying conditions, including genetic abnormalities. Medical investigations should be performed routinely, and must be modified to reflect the individual circumstances, based on physical examination, clinical judgment and the child or young person’s profile.

No tests should be undertaken unless clinically indicated. Genetic tests are done usually when there is a suspicion of syndromes e.g., when there is dysmorphism or macrocrania. The Dubai Clinical Practice Guidelines for Autism Spectrum Disorder (ASD) in Children and Adolescents offers a comprehensive list of tests for MDT providers.

What comes after assessment?

RECOMMENDATION FOUR: NON-PHARMACOLOGICAL INTERVENTIONS

It’s important for families to have access to educational and information resources.

The active involvement of the family is important in ensuring that skills acquired during intervention are generalised to different settings. Parent-mediated interventions can involve delivering structured training programs, in a group setting or one-to-one, in parallel with their child’s individualized intervention plan. Such programs allow parents to utilize individualized strategies and techniques to facilitate skill acquisition, and manage any challenging behaviours. Intervention plans should incorporate the use of natural environment and the daily routine of the child/ adolescent.

Supervision is an important component of an Applied Behaviour Analysis (ABA) program that facilitates the ongoing monitoring fidelity of implementation, re-evaluation of goals. Supervision hours for each child will vary depending on their needs and should include in vivo supervision.

Applied Behaviour Analysis interventions

ABA is a science that focuses on treating the core issues associated with ASD and the development of abilities. This is done through analysing and modifying the social and learning environment to produce socially valid and significant changes in behaviour to maximize adaptive functioning in individuals with ASD.

Early intensive behavioural intervention (EIBI) is one such treatment based on the principles of applied behavior analysis and should be at play more than 20 hours a week.

It is a comprehensive approach that focuses on acquisition of adaptive behaviour (e.g., language, play, social interaction, imitation, motor skills etc.) and reduction of problematic behaviours that may interfere with learning (e.g., tantrum, inattention, noncompliance, aggression, etc.)

ABA services must be provided and supervised by Licensed Behaviour Analysts with expertise and formal training in ABA for the specific treatment of ASD. Or, delivered by Licensed Behaviour Technicians who are registered behaviour technicians or under the direct supervision of a Behaviour Analyst.

ABA services should include the core characteristics of:

Comprehensive skill assessment - through records, observation and interviews - is recommended to be conducted to identify strengths and weaknesses across developmental domains, barriers to progress and to inform an individualized ABA treatment plan.

Treatment may vary in terms of intensity and duration, the complexity and range of treatment goals, and the extent of direct treatment provided, based on the number and intensity of behavioural targets. Treatment may vary in terms of how ‘structured’ or ‘naturalistic’ they are, and may include family or peers, based on the child’s age, rate of progress, available resources etc.

ABA treatment must delivered in multiple settings (e.g. home, school, community etc.) and multiple people (e.g. parents, siblings, peers etc.) to promote generalization and maintenance.

ABA treatment models can be generally categorized as Focused or Comprehensive.

Speech and language interventions

Speech and language interventions are recommended to be used to treat social and communication deficits associated with ASD.

Speech and language intervention services should be provided and supervised by a. Licensed Speech and Language Pathologist/ Speech and Language Therapist (SLP). With expertise and formal training in SLP for the specific treatment of ASD.

Individuals diagnosed with ASD are referred to an SLP, and other professionals as needed, for a comprehensive assessment.

[Assessment of social communication skills should be culturally sensitive, functional, and sensitive to the wide range of acceptable social norms that exist within and across communities; and involve the collaborative efforts of families, caregivers, classroom teachers, SLPs, special educators, and psychologists as needed.]

Speech prosody - the rhythm, stress, and intonation of speech. Children with ASD should receive varieties of speech, language and communication interventions tailored for their need.

Speech and language interventions for disorders that are considered in differential diagnosis will depend on the SLP evaluation of the child and review of their record of verbal skills.

Speech and language treatment modes and modalities are technologies or other support systems that can be used in conjunction with or in the implementation of various treatment options. For example, video-based instruction can be used in peer-mediated interventions to address social skills and other target behaviours.

The use of Speech generating device and technology-based interventions is useful for children with limited or no speech.

TYPES OF LANGUAGE INTERVENTION

Comprehensive SLP is provided when communicative, social, and language skills are affected.

One example is early intensive speech and language therapy intervention which are communication, speech and language programmes that range from 2-5 hours of direct therapy per week, in addition to direct and indirect caregiver training; involve 1:1 staffing; and are provided in structured therapy sessions, which are integrated with more naturalistic methods as appropriate. As the child progresses, treatment in different settings and in the larger community should be provided.

Augmentative and Alternative Communication (AAC) involves supplementing or replacing natural speech and/or writing with aided (e.g., Picture Exchange Communication System [PECS], line drawings, Blissymbols, speech generating devices, and tangible objects) and/or unaided (e.g., manual signs, gestures, and finger spelling) symbols. Whereas aided symbols require some type of transmission device, production of unaided symbols only requires body movements.

Activity Schedules/Visual Supports include objects, photographs, drawings, or written words that act as cues or prompts to help individuals complete a sequence of tasks/activities, attend to tasks, transition from one task to another, or behave appropriately in various settings. Written and/or visual prompts that initiate or sustain interaction are called scripts. Scripts are often used to promote social interaction, but can also be used in a classroom setting to facilitate academic interactions and promote academic engagement.

Social Communication Interventions and frameworks are designed to increase social skills, using social group settings and other platforms to teach peer interaction skills and promote socially appropriate behaviours and communication.

(i) Social Skills Groups—groups in which appropriate ways of interacting with typically developing peers are taught through direct instruction, role-playing, and feedback. Groups typically consist of two to eight individuals with social communication disorders and a teacher or adult facilitator.

(ii) Social Stories—a highly structured intervention that uses stories to explain social situations to children and to help them learn socially appropriate behaviours and responses.

Occupational Therapy (OT)

Occupational therapists study human growth and development and a person’s interaction with the environment through daily activities. They are experts in the social, emotional, and physiological effects of illness and injury. This knowledge helps them promote skills for independent and adaptive living in people with autism and other developmental disorders.

How can an OT help?

OTs can help by means of evaluation and therapy looking at the child’s ability to do tasks they are expected to do at their ages such as motor skills such as posture, balance, or manipulation of small objects like stringing beads or doing puzzles.

They also help a child develop coordination, body awareness, and play skills.

Another area that OTs can support children with autism with is developmental activities, domestic skills, personal skills such as toilet training, bathing, dressing, feeding, brushing teeth, combing hair and other grooming skills.

Additionally, OTs provide training in fine motor skills required for holding objects while handwriting or cutting with scissors.

Structured Educational Interventions

Structured Educational Interventions for children and adolescents with ASD with explicit teaching and the development of an appropriate individualized educational plan is central in providing effective service to the individual and families.

Effective educational programs have the following key components:

Programs shown to be effective typically involve planned, intensive, individualized intervention with an experienced, interdisciplinary team of providers, and family involvement to ensure generalization of skills.

The educational plan should reflect an accurate assessment of the child’s strengths and vulnerabilities, with an explicit description of services to be provided, goals and objectives, and procedures for monitoring effectiveness.

Goals of educational programs should be enhancing verbal and nonverbal communication, academic skills, and social, motor, and behavioural capabilities. In some instances, particularly for younger children, a parenteducation and home component may be important.

Examples of structured educational models supported by evidence include:

a. Early Start Denver Model (ESDM).

b. Treatment and Education of Autism and related Communication Handicapped Children program (TEACCH).

The development of the educational plan and should reflect an accurate assessment of the child’s strengths and vulnerabilities, with an explicit description of services to be provided, goals and objectives, and procedures for monitoring effectiveness.

RECOMMENDATION FIVE: SUPPORT FOR INDIVIDUALS, FAMILIES, AND CARERS

Families with children with autism often experience high stress levels as a consequence of their care-giving responsibilities, the child’s cognitive impairment and the need for long-term support. Proactive crisis support planning should be routinely undertaken and reviewed on a regular basis, recommends the report.

Resources of information and service support: Emotional support, advice and education are required by parents to enable them to work effectively with their children. Parents also need access to up-to-date information about treatment options and support services. Research evidence acknowledged that information, support and education should be provided for the entire family unit.

Social Services: Families of children with ASD should be referred to social services for additional social support. Research shows that there is an economic and social impact on families caring of children with ASD.

Evidence suggests that the provision of respite care and a care coordinator model of care is likely to lead to the most positive outcomes for parents. Children and adolescents need to access social support packages in the form of special needs benefits and other available benefits.

Physical and Mental Healthcare: Children with ASD require clinical monitoring for physical growth, health and development, as well as co-morbidities.

The main goal is for children with ASD to enjoy a stable physical health which will improve quality of life. However, there is a lack of reliable and valid measures to evaluate progress and change of a child’s behaviour and functioning over time after the diagnosis of ASD.

RECOMMENDATION SIX: EDUCATIONAL SUPPORT FOR INDIVIDUALS AND FAMILIES 

Regardless of the intervention, implementation across home, early childhood education, school and community settings is important to the outcomes. Children with ASD regardless of their abilities need to access an appropriate academic framework with a therapeutic environment in which the requisite supports are provided.

Educational staff should have knowledge and some training about the presenting features of ASD.

Educational staff should have smooth access to information, resources on ASD and how to manage it within school environment.

Complications

Mental health conditions have substantial personal and economic costs for children with autism spectrum disorder (ASD), they are prevalent in children with ASD from a young age and characterize > 85% by adolescence. The most common mental health conditions are behaviour/conduct problem, anxiety problem, attention deficit disorder (ADD)/attention. There is an outsized need for effective mental health assessment and treatment of these youth.

Transition from Adolescents to Adult Services: A transition plan for children with ASD should be set up by the all professional involved in child care at an early stage. ASD children have varying intellectual and functional abilities, hence the transition into adulthood has to be planned early according to their individual abilities. Availability of vocational training, post-secondary education, day care activities and supported employment are options for these. Care for children and adolescents with ASD should be continued in adult health services

* There are also pharmacological interventions that can be used - these must only be taken under the guidance and support of the MDT.