When you hear the word Autism, what comes to your mind? What does this 6-letter word mean to you? I want you to reflect on this for a minute. Like many of you, Autism meant absolutely nothing to me; I had no knowledge or understanding and certainly no conscious and purposeful experience with people living with this diagnosis. It will take more than 2 decades and a few years working directly with this population to conceptualise the lived experience and realities for people on the Autism Spectrum Disorder (ASD).
April is recognised as Autism Awareness Month, an initiative designed to promote autism awareness, inclusion and self-determination for people living with ASD and to ensure that they are given the opportunity to attain the best quality of life. In light of this campaign, I thought it might be important to share some basic information on Autism and suggest some practical steps that can be taken within the Grenadian context towards autism awareness, inclusion and social justice. Indeed, autism matters but first I must dispel a few myths.
- People living with autism are possessed by an evil spirit or demon that needs prayers and exorcism
- Your child is autistic as a punishment from God for your past sins or disobedience
- Autism is the result of bad parenting “you can’t tek care of yuh child”
- People living with Autism do not have empathy, they are violent and stupid “they dunce and dotish”
- Individuals with autism are unable to be in meaningful social and romantic relationships
None of the myths above are correct. In fact, people on the ASD spectrum are able to live full and meaningful lives once they are provided with adequate and responsive supports and services.
Although the precise cause of Autism Spectrum Disorder (ASD) is unknown, the literature and current research connect autism to biological and neurological differences in the brain1. This complex neurodevelopment condition is understood to affect people regardless of race, ethnicity and socioeconomic level3. ASD is on a continuum which suggests that individuals with this diagnosis might be challenged differently in regards to their own abilities on a range from mild to severe2. For example, there are people diagnosed with ASD with no speech or ability to attend to the activities of daily living such as toileting or showering, they are considered lower functioning, and on the other hand, there are those that possess excellent vocabulary and can care for themselves without support, they are considered high functioning. In essence, no two individuals living with ASD present the same.
ASD is characterised by what is known as repetitive and restrictive patterns of behaviours, activities, and interest, speech, and language difficulties and challenges with social interaction2. For instance, many children with ASD in social circles may avoid eye contact, may prefer to play alone, and may fail to recognise verbal and nonverbal cues. Instead, these children may present with what is know as atypical behaviours in social environments such as rocking from side to side, flapping of the hands, repeating words and phrases and intense preoccupations, or obsessions to a preferred activity or object4. In addition to these repetitive and restrictive patterns of behaviours, other Medical conditions can be present with ASD, including neurological (seizures), gastrointestinal, sensory processing problems and nervous system concerns which can further complicate the experiences for persons living with the disorder5. These symptoms can be present from early childhood and can affect daily functioning across the life span2.
Diagnosis & Management
Presently, there is no particular medical test to determine ASD in individuals. Therefore, identification of the disorder can be challenging. Typically, a person is diagnosed by a professional such as a paediatrician, psychiatrist, psychologist or neurologist trained in autism spectrum disorder. In some cases, an interprofessional team can be consulted to diagnosis, assess and treat individuals living with ASD given the complexity in impairments and behaviours. For instance, an occupational therapist (OT) can be referred to evaluate the individual sensory need (smell, taste, sight, hearing, and touch) and motor skills (movements involving smaller & larger muscle groups such as those in your arms and legs) whereas a behavior therapist will assess the individual function of behavior, for instance, aggression, agitation, and attention. A social worker may be able to provide broader support to the child and their family including play therapy or counselling if needed.
Awareness, inclusion and social justice
What can we do as a nation to become more aware and inclusive geared to improve the life possibilities including the right to quality education, appropriate support and services for people living with ASD? I suggest 5 points as a place to start:
- A well planned out multidimensional education campaign might be the first line of defence to reducing disability stigma and raising the awareness of people on the ASD spectrum. Since religion plays a critical role in the education system in Grenada, it will be prudent that faith groups become engaged in outreach to help with the dissemination of credible and evidence-based information and raised awareness of ASD to families, carers, professionals and community members. Additionally, multimedia platform (television, print media & social media) can be used to encourage conversation about the experience of living with autism.
- Within the school system, educators can organise and mobilise students to participate in public campaigns designed to generate ideas on Autism as a diagnosis and the experiences of living with autism. This can be done to raise awareness within the school system and across the Grenadian society. Maybe include students & families suspected and/or on the spectrum in those campaigns.
- The establishment of professional development training on disability education with an emphasis on Autism Spectrum Disorder (ASD): The professional development certification can be created in consultation and collaboration with tertiary level institutions locally, such as the T A Marryshow Community College (TAMCC) Department of Social Sciences, and the St George’s University (SGU) Department of Humanities and Social Sciences.These partnerships will not only facilitate the implementation of autism-related education, awareness and practices in the context of Grenada but might encourage and broaden autism-related discourse and research across the Caribbean region.
- Educators, parents and the general public can consult credible and accessible online resources for foundational information on Autism (For example, see learnnc.org www.autismspeaks.org, and http://www.autism-society.org/autism-101-online-course/).
- More importantly, the public at large can become involved and engaged with the Autistic Foundation of Grenada Inc and incentive devoted to increasing the awareness and understanding of ASD on the Tri-island state thought public education, networking and advocacy (see https://www.facebook.com/AutisticFoundationOfGrenada/).
So the next time you see someone that might be presenting “unusual” ask yourself what can I do to make a difference in that person’s life and if you suspect that the person might be on the spectrum be purposeful to give constructive meaning to the word – AUTISM as well as full respect for people living with the diagnosis, hold off on the judgments and remember that their life matters even in Grenada.
Leo Edwards is a PhD Student in Education, and Social Justice focused on Autism research. He is a clinical therapist at a leading mental health and addiction hospital in Toronto and a facilitator with the University of the West Indies (the UWI) open campus.
- The Scientific Review of Mental Health Practice. (n.d.). Retrieved March 28, 2017, from https://www.srmhp.org/0101/autism.html
- Baird, G., Cass, H., Slonims, V., Baird, G., Cass, H., & Slonims, V. (2016). Clinical review Diagnosis of autism. British Medical Journal, 327(7413), 488–493.
- Fombonne, E., Sych, F. R. C. P., Simmons, H., Sych, M. R. C. P., Ford, T., Sych, M. R. C. P., … Sych, F. R. C. P. (n.d.). Prevalence of Pervasive Developmental Disorders in the British Nationwide Survey of Child Mental Health. Journal of the American Academy of Child & Adolescent Psychiatry, 40(7), 820–827. http://doi.org/10.1097/00004583-200107000-00017
- Boyd, B. A., Mcdonough, S. G., & Bodfish, J. W. (2012). Evidence-Based Behavioral Interventions for Repetitive Behaviors in Autism. J Autism Dev Disord,42(6) 1236–1248. http://doi.org/10.1007/s10803-011-1284-z
- Mazurek, M. O., Vasa, R. A., Kalb, L. G., Kanne, S. M., Rosenberg, D., Keefer, A., … Lowery, L. A. (2013). Anxiety , Sensory Over-Responsivity , and Gastrointestinal Problems in Children with Autism Spectrum Disorder. J Abnorm Child Psychol,165–176. http://doi.org/10.1007/s10802-012-9668-x