Understanding Autism Spectrum Disorder

Disability
Eswatini has adopted and ratified the United Nations’ convention of the rights of people living with disabilities. It defines Disability as “any physical, sensory, neurological, cognitive or psychiatric condition that has an impact on a person’s lifestyle and or everyday functioning.” According to Eswatini census of 2017, the population of people (5 – 19 years) living with disabilities stands at 25 983 - including but not limited to physical, communication, learning, intellectual and hearing impairments. Autism Spectrum Disorder (ASD) is one of the conditions that are considered disabling in the country. Even though the prevalence has not been ascertained, there is evidence that the numbers are increasing and the condition continues to affect the everyday functioning of the children in their communities. In Eswatini, there is still limited understanding about ASD and the myths surrounding it. This article will focus on ASD as Eswatini joins the world in commemorating World Autism Awareness Day on April 2nd.

Understanding ASD Autism Spectrum Disorder (ASD) is a developmental disability which leads to communication, social and behavioural difficulties (Centers for Disease Control and Prevention, CDC). ASD includes conditions which may be diagnosed separately- namely Autistic Disorder, Pervasive Developmental Disorder- not otherwise specified, Childhood Degenerative Disorder and Asperger Syndrome. This is why it is referred to as a spectrum with varying signs and symptoms, age of onset, severity and progression of the disorder (National Institute of Mental Health, NIMH). People living with ASD do not have any distinguishing physical features but rather exhibit differences in their learning, thinking, problem-solving and in their ability to carry out daily activities (ranging from being exceptionally skilled to being severely impaired). ASD has no single known cause, however research suggests that there may be genetic, environmental and biological factors (e.g. having a sibling with ASD, genetic chromosomal conditions such as Fragile X Syndrome and children being born to older parents) (CDC, NIMH). There is no known cure for ASD.

Signs and Symptoms
Children and adults living with ASD have challenges with communication and interaction and exhibit repetitive behaviours or restricted interests. These are outlined below:
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● Make little or no eye contact
● Show little interest in others; no interest in toys or inappropriate use of toys
● Limited reaction to verbal input (e.g. no response to name by 12 months)
● May have delayed speech and language skills
● Repeat words/phrases over and over (Echolalia)
● Obsessive interest in a specific object or topic
● Lining up objects and becoming upset when things are moved.
● A need to follow a specific routine
● Easily distressed by changes in routine/a change in their environment
● Have unusual habits such as rocking, spinning, hand flapping
● Oversensitivity to smell, taste, texture or sound
● May be hyperactive/display aggression
● May have a short attention span
● Exhibit self-injurious behaviour (e.g. head banging/biting/scratching themselves).
Other characteristics which have been identified in people living with ASD include:
● Impaired cognitive and learning skills
● Impaired movement skills (fine/gross motor skills)
● Epilepsy/seizure disorder
● Atypical eating and sleep habits
● Gastrointestinal issues (e.g. constipation)
● Mood/emotional disorders

Diagnosis & Treatment
Ideally, children in the early stages of development (9 -30 months) should have frequent health screening in order to identify any development delays, particularly those at high risk. Should a child present with developmental differences in behaviour and overall functioning, further investigation is necessary. Diagnosis of ASD should be made by a team of professionals including paediatricians, child psychologists, speech therapists and occupational therapists. Evaluations should include medical/neurological examinations, assessment of the child’s cognitive and language abilities; observation of child’s behaviour and detailed information provided by the parents/caregiver. Early and accurate diagnosis is important (i.e. before 3 years) as it provides a basis on which an effective educational and treatment plan can be established.

Following diagnosis, some of the interventions available in our context may be implemented. The use of certain medications and nutritional supplements has been found effective in treating some of the symptoms seen in individuals with ASD- including hyperactivity, inattention, aggression - which may support progress in therapy and school. Currently, this is managed by Paediatricians/Psychiatrist in our health facilities as they are able to monitor and treat any side effects. To develop their physical, cognitive, learning and communication skills, speech and occupational therapy is needed with the aim of helping children become more functional in their environment. These services are provided at some of the major hospitals in the country. Dietary changes have also reportedly been effective for some children, however this should only be done in consultation with a dietician and medical practitioner before any decisions are made.

Available interventions in Eswatini
Internationally, there appears to be an increase in the prevalence of autism over the last decade, although there is no explanation as to why. This is true within our context as well. Given that autism is a multifaceted disorder, various professionals are needed to create interventions for the child treating whole person and not just a few hand-picked symptoms (Applied Behavior Analysis Programs Guide, ABAPG). In Eswatini, government hospitals provide services for people diagnosed with ASD which include occupational therapy and speech therapy for low fees.
Occupational Therapy
Occupational Therapists (OTs) can work in many areas of practice; their schedules can be flexible, and they can work for themselves, which means they can go to schools, in homes, and out in the community with children with autism. Occupational therapists create individualized treatment plans for the children they work with (ABAPG). A few examples of OT interventions for children with autism include:
• Physical activities to promote gross and fine motor skills
• Developmental activities such as brushing teeth, making the bed, or getting dressed
• Play-time activities where collaboration, communication, and social skills are involved
• Adaptive tasks like practicing transitions between activities or places and working on self-regulation
• Introducing sensory-based strategies

Speech Therapy:
Many children with autism are nonverbal and can communicate more effectively using pictures or technology, which is known as Alternative Augmentative Communication (AAC). This type of communication can be done via (and not limited to) sign language, use of gadgets (e.g. phones), pictures and other speech output devices (Autism Speaks, AS). Examples of the skills that speech therapy may work on include:
• Strengthening the muscles in the mouth, jaw and neck
• Making clearer speech sounds, where speech is present
• Working on social and behavioural skills in a communication context
• Matching emotions with the correct facial expression
• Understanding body language
• Responding to questions
• Matching a picture with its meaning
Speech therapy is appropriate for most individuals with autism and can greatly benefit those who struggle with communication and language, whilst occupational therapy services can increase their communication skills, improve their ability to socialise better with peers and in group settings, express emotions more appropriately, show more independence and confidence, and develop and maintain relationships.
 

The lived experience
Some parents who have children living with ASD graciously agreed to describe their experiences. These are their responses:

1. What prompted you to first seek help for your child and how old were they? W: “She was 20 months old…she had not started talking.” N: “He was 3 years old and not talking…wanted to know if this was normal.”

2. Who gave you the final diagnosis? What was your reaction? W: “…a Paediatrician at Mbabane Government Hospital - a shock to us because we did not know anything about it.” N: “…by speech therapist and occupational therapist…I needed to educate myself more about autism to understand.”

3. Since receiving this diagnosis, what has been the biggest challenge for you as a parent? W: “She could not do basic things for herself (e.g. using the bathroom), diet was limited to eating only white food…Her hyperactivity meant I could not take her to public places.” N: “…lack of schools that focus on autism in Eswatini which...”

4. What has been the most significant obstacle you've overcome?
W: “The potty training was a success…and she is now able to eat a variety of foods.” N: “…when he goes through episodes of barely sleeping for days, continuously agitated/cries often.”

5. What does it mean to you to be your child’s advocate? W: “I have to advocate for her -most people do not know much about the spectrum.” N: “Creating awareness and understanding of children like him.”

6. What would you say to other parents who have recently been given the same diagnosis? W: “It takes a lot of patience and understanding…take the child for therapy.” N: “…learn not to have expectations, be supportive and patient…they are different- focus on raising a happy child.”

7. What is the best part about parenting your child with ASD? W: “You never get bored…she follows routines closely…she’s very smart in everything.” N: “very affectionate, enjoys laughing. I enjoy playing with him and chasing him around- it makes me a child again.”

8. Do people in your community understand the needs of your child? Do you get adequate support? W: “Some don’t understand, others do… there are no schools for children on the spectrum.” N: “I take the opportunity to educate people within my surroundings so I get needed support… ”

Conclusion
Even though it is likely that people living with ASD will require on-going care through-out their lives, if they receive the appropriate care and support, they can learn and compensate for their challenges allowing them to function in their environment, thus to some extent, reducing the disabling nature of this condition. When taking care of a child with ASD, the best way is to take a whole-child, holistic route that includes various forms of treatment. Occupational therapy, physical therapy, and speech therapy are all examples of service-related treatments that children with ASD can access in Eswatini. The benefits of obtaining these services at a young age are wonderful and those who believe their child with ASD might need OT, and ST services can contact the numbers below. There are also community outreaches with NGOs such as Autism Eswatini where they team up with health professionals to support communities with issues relating ASD. Autism Eswatini has established a parent support group were parents and caregivers of children with autism share experiences and learn from one another.

For further assistance contact:
National Psychiatric Referral Hospital: 2505 55170
Mbabane Government Hospital: 2411 8000
Mankayane Hospital: 2538 8311
Autism Eswatini: 7692 9727 or autismswaziland@gmail.com