What is ASD?
Autism spectrum disorder also known as ASD refers to a neurological and developmental disorder that affects people’s social interaction, behavioral, and cognitive capacity.
Let’s break down what this means:
(i) Neurological: it stems from/affects the brain;
(ii) Developmental: it relates to childhood, growth and the early years of human life;
(iii) Social interaction: it refers to their ability to act, react and engage with other people;
(iv) Behavioral: this pertains to conduct and comportment within any given context; and
(v) Cognitive capacity: the brain’s ability to acquire, manage, interpret and use information.
Diagnosing on a ‘Spectrum’
According to the World Health Organization (WHO), ‘Autism spectrum disorders (ASD) are a diverse group of conditions. They are characterized by some degree of difficulty with social interaction and communication. Other characteristics are atypical patterns of activities and behaviours, such as difficulty with transition from one activity to another, a focus on details, and unusual reactions to sensations.’
What this means is that the occurrence of ASD can take on many different forms so that the type and intensity of each person living with the condition varies significantly. In many cases, symptoms of ASD appear in the first 2 years of life. However, wrongful diagnosis, symptom masking, lack of access to healthcare and skilled personnel, cultural bias and several other factors may result in later diagnosis of the condition. Unfortunately, some cases are never diagnosed, leaving the individual to live with autism without even knowing it.
Due to this varied nature of conditions that ASD can present as, the American Psychiatric Association created a reference book known as the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), to guide health care providers use in the diagnosis of mental disorders. The DSM-5 indicates three criteria for the diagnosis of ASD:
- Criterion A: persistent deficits in reciprocal social communication and social interaction
- Criterion B: restricted, repetitive patterns of behaviour, interests or activities
- Criterion C: symptoms must be present in the early developmental period
What these mean is that for a person to be clinically diagnosed with ASD, there must be observable, ongoing difficulties in how they communicate and connect socially; they should exhibit a cycle of limited and repeated behaviors, interests, or activities; and that the signs of the condition need to show up when the person is very young.
Signs and Symptoms
Let’s consider the signs and symptoms associated with Autism Spectrum Disorder (ASD) based on the standard—DSM-5 criteria. While this list outlines a major portion of ASD symptoms, each person’s presentation of these behaviours may be unique to them.
- Delayed language skills
- Delayed movement skills
- Delayed cognitive or learning skills
- Irritability
- Insomnia
- Extended knowledge retention
- Epilepsy or seizure disorder
- Unusual eating habits
- Unusual mood or emotional reactions
- Anxiety, stress, or excessive worry
- Excellent visual and auditory learning skills
- Proficiency in science, math, music, or the arts
- Sporadic or minimal eye contact
- Slow response to names or verbal cues
- Social detachment
- Hyperactivity/Impulsive behavior
- Extremely low or hypersensitivity to light, sound, temperature or other sensory elements
- Inconsistent gestures, facial expressions, and body language
- Difficulty forming friendships or collaborating in imaginative play
- Stimming/self-stimulatory behaviour (such as rocking, hand flapping)
- Echolalia/Repetition of words or phrases
- Excessive concentration/Persistent fascination with objects or details
- Troubled adjustment to new routines and getting agitated over small adjustments
What to Do
Receiving an ASD diagnosis can be a life-changing event. The first thing is to realize you are not alone. Data from the World Health Organization, the leading medical institution on the planet, estimates that about 1 in 100 children has autism. This means that the condition is more common than many people realize.
After an ASD diagnosis, here are some steps you should consider taking:
1. Seek knowledge: The old saying that knowledge is power still rings true. Learn about ASD to understand what it means for your child and how you can adjust.
2. Seek Support: Connecting with communities, support groups and organizations such as the Bethel Xafe Autism Foundation helps families, parents, and caregivers enjoy access to support, community, and clarity.
3. Consult Professionals: Experts and specialists such as psychologists, speech therapists, and occupational therapists will provide the specialized care required for health, education, and life management.
4. Encourage Routine and Structure: Connecting with your child through shared activities and established routines helps to provide consistency and manage tantrums or other behavioural episodes.
5. Monitor Progress: Keeping track of your child’s development helps you notice the ‘small’ wins, know what improvements have occurred, and adjust strategies based on their effectiveness.
In all of this, know that you are not alone and help is available. Finding a community that helps you be kind to yourself, embrace your child’s uniqueness, and keep hope alive for their future is important. If you or someone you know requires help or resources, please contact us at info@betelxafeautism.com or https://bethelxafeautism.org/.
- The Importance of Support in Autism Care
Every person, including those living with autism, has several fundamental human rights, including the right to achieve the right to life, dignified quality of life, and access to healthcare. No doubt, therapeutic support can be classified as a form of healthcare as it helps create stability for the persons involved as they face the day-to-day complexities and challenges that come with living with ASD.
From early detection to psychosocial support, autistic children can develop their social and communication better, integrate more effectively with people around them and enjoy a wholesome life like their neurotypical contemporaries. For instance, early intervention can significantly improve long-term outcomes. Let’s consider three cadres of support necessary for holistic autism care:
- Individual Support
Support is crucial in the care of individuals with Autism Spectrum Disorder (ASD) for several reasons. Like many other health conditions, ASD requires specialized care and interventions, to help people living with the condition enjoy the best quality of life possible. In addition to general health concerns that every human being is subject to, people living with ASD may also experience specialized health challenges associated with their condition.
Beyond the physical effects, mental health challenges may also airse due to the pressures or negative perceptions of those around them. Daily independence and productivity may also be impaired due to behavioral risk factors like inactivity and poor dietary choices, and greater risk of bullying, violence, injury, and abuse. As a result, their emotional well-being must not be left behind. This can be catered to through consistent presence, reassurance, calming routines, and other activities that help elevate the mood, and reduce reasons for fear, anxiety, or other stressors.
- Community Support
Community support—through local community members or other ASD parents and caregivers— is essential in ASD care as it promotes the development of the right narratives about ASD and other related conditions. It also improves the level of openness of the community members to assist affected families, provides access to neighbourly goodwill, reduces stigma, advocates for rights and fair treatment, and results greater accessibility, inclusivity, and support for all. A strong support system is key to unlocking the full potential of individuals with autism. Hands-on support in the form of community engagement, group counselling, therapy, and sensitization provide emotional relief, deepens understanding of the condition and its unique implications, and results in experiential practical advice, helping caregivers and their families cope more effectively. With access to this form of support services, they can enjoy a sense of community and belonging, helping them to be more present in their immediate environment, and participate in communal interactions, leading to greater independence and a higher quality of life.
Institutional and Governmental support
Once diagnosis is confirmed, it is crucial for children, teens, and adults, along with their families and caregivers, to receive relevant, accurate information, services, and practical support tailored to their evolving needs and preferences. This is possible through the work of expert professionals, volunteers, and social enterprise organizations that commit resources to sensitizing the public and ensuring the dissemination of information to fill the knowledge gap around the issue of autism.
Autistic individuals have complex healthcare needs that require tailored approaches to individual needs, and integrated services, including health promotion, subsidized healthcare, and rehabilitation. As a result, concerted efforts between health care, education, employment, and social services are often required. Support systems, including therapies and educational programs, help people with ASD develop essential life and interaction skills.
Life with ASD in itself can be accompanied by serious challenges. Unfortunately, autistic individuals often those challenges in addition to stigmatization and discrimination, which come from wrong cultural, religious, and superstitious beliefs in Nigeria. This can lead to denial of access to healthcare, education, and socialization in a country where the systems and institutions meant to protect the interests of people on the spectrum and people with disabilities are almost non-existent.
The provision of relief materials, educational resources, therapy options, educational programs, and financial assistance also provide significant respite from these complexities and their effects: stigmatization, poor orientation, lack of skilled professionals, and feelings of exclusion from the large majority of society.
Positive action and intervention by advocacy and welfare groups or organizations play a critical role in improving the quality of life of affected people, by advocating for the rights and needs of individuals with ASD. They spur the government to accountability, address policy deficiencies, empower families and individuals to voice their needs and seek necessary redress.
In conclusion, understanding Autism Spectrum Disorder is essential for helping individuals living on the spectrum, fostering acceptance, and providing support for them. By recognizing the unique strengths and challenges of those with ASD, we can create more inclusive communities that celebrate neurodiversity. At Bethel Xafe Autism Foundation, we envision a world where individuals with autism are fully supported and embraced for their unique strengths. Together, we can create inclusive communities that empower autistic individuals to thrive. If you would like to learn more about our programs, resources or how you can get involved, please reach out to us at info@bethelautism.org or our website. Join us in making a difference!