If there was ever a parent that needed a village around them, it is the parent of a special needs child, and in this case, an autistic child. As compared to the international standards, the social support and public health systems in place for parents of autistic children in Trinidad and Tobago is severely under par. The parent is usually made to be the sole support and caregiver of the child. This can take a huge toll in terms of the mental and emotional load.
Our society has set up autism in a way where it is something to be feared, rejected and treated like a disease or pathologized. The old and pervasive way of thinking frames autistic behaviours as deficits, and this is where the stigma surrounding autism comes from. Here is the thing though, autism is just a part of neurodiversity. Just like there are different races, and abilities of people, there are different ways your brain operates. Most people behave in certain ways that are considered ‘normal’ or neurotypical. But some people behave in uncommon or neurodiverse ways. Thankfully, with a lot more research and understanding, and more autistic people speaking up about their lived experiences, hopefully this way of thinking will change to acceptance.
Negating Societal Views
These parents unfortunately face a society that holds extremely negative views about autism. They have to face family, friends and teachers who do not understand some of their child’s behaviours. They have to be their child’s protectors and advocates, even while not understanding themselves. They are all uniquely different. The journey as a parent of an autistic child is a deeply personal one and could be an extremely isolating one, because of the social stigma and lack of awareness.
The Challenges Parents Face
There are nagging questions that come into your mind when you observe certain behaviours of your child. How do you admit to yourself that something might be ‘wrong’ with your child? Who can you speak to about it? This is the first stage... the not knowing, the constant worry and questioning, the denial. The second stage is knowing and the invisible grief. The letting go of what you thought your journey as a parent would be. It is heavy, thinking and knowing that your child is not like other neurotypical children.
That load is even heavier than that of a typical parent because they are trying to help their children navigate a world that is not designed for them. A simple example, in Trinidad and Tobago, with the liberal use of fireworks and deafening music systems, it could be utter pain for some autistic people. Noise is a huge trigger for overstimulation, and these parents must try to prepare their child for potential loud noises. Then they must help calm and soothe the child if or when they are triggered by the sensory overload. One thing a community could do to help these parents is to utilise a soundproof venue or limit the volume and duration of an event. Being mindful and considerate of who is around you will always help.
Another part of that load is the stress of trying to understand and manage sometimes difficult or confusing behaviours. One source of stress for these parents could be just trying to communicate effectively with their child, as autism could affect typical patterns of communicating. As a result of not being understood, the child could become more and more frustrated and experience a meltdown. The parent becomes hypervigilant, and constantly be alert and aware of minute ways their child tries to show them what they mean before they deregulate. It is very much likened to the newborn to toddler stage, where you are learning your child's cues, learning what it is they need at a certain time, and coupled with possibly a lack of sleep, with constant worrying and anxiety. That is every day for some parents of autistic children.
What Support Systems Make a Difference
The first thing they need is a robust support system that is encouraging and non-judgmental. People who can let them vent about their anxieties and concerns. People who can celebrate the beautiful and amazing little victories of their children. They need people who can partner with them on the journey of parenting an autistic child. Parents would benefit from support groups with other autistic parents, as this could be one of their greatest resources. Community systems like schools, places of worship or even malls could create a sensory playroom or quiet room, with trained personnel who could give the parent a much needed break.
Learning to carve time out to do self-care and strengthen coping skills, will help in the short and long term. When you are better able to stay calm in the face of a meltdown, you will be more able to regulate both your stress and your child's stress. Using mindfulness breathing techniques will help to slow down the adrenaline response and kick in your parasympathetic nervous system that enables you to relax and calm down. Practicing it during a stressful day will help keep your stress levels down.
Devoting time to things that make you feel better, doing creative or physical things will further help manage your stress, and release pent-up energy. Playing hand-eye coordination games with your child, like throwing and catching a ball, would help both of you in different ways. It is also an excellent way to create healthy attachment. These things will work for parents of both neurotypical and neurodiverse children but will be especially helpful for parents of autistic children. The good part is that you could also teach these strategies to your children, as learning effective coping skills will help them to live within a neurotypical world.
Awareness is Key
Understanding that your child is “Gifted” and accepting their neurodiversity could be one of the best ways you could help yourself and your child. Teaching others and spreading awareness in your community could have an even wider benefit in breaking down the social isolation and stigma and contribute to creating a more accepting world for your child.
The author is a Licensed Masters of Social Work, who earned her Masters of Social Work degree at Adelphi University in New York. She graduated summa cum laude in 2013. As a Social Worker, part of her portfolio includes Parent Education and Support of children diagnosed under the Autism Spectrum Disorders. She has completed post graduate certifications by Harvard University and conferences with Dr Bessel Van Der Kolk, such as Post Traumatic Stress and Related Disorders, and Assessing, Treating Self Destructive Behaviors, and Trauma, Attachment and Neuroscience.