Autism, covid19 and mental health issues

DR RADICA MAHASE

“MY name is Anil and I am a single father to two beautiful twin daughters, Andra and Kiara. They are both ten years old. Andra is my special child, she was diagnosed with autism at age four and she was developing really well because my wife used to stay at home and teach her everything. My wife passed away in a car accident last August and things have been really difficult since then. It’s just me and my girls and I cannot give them the care or attention that they got when my wife was around.

I was doing okay though. I work in the construction industry and I earned enough to send Andra to a private school and to hire someone to stay with my daughters when they get home from school. But then covid19 struck and I feel like I just can’t seem to get back on firm ground. At first I dipped into my savings and with the help of my parents I manage to provide for my girls. But then I started to see my savings disappearing. Andra has some health complications and she’s on prescription medications and those are very expensive so savings are decreasing too quickly. I keep telling myself that once the construction industry reopens I will be okay but it’s very difficult to remain optimistic.

Last week Andra got very sick and I had to rush her to casualty in the hospital. It was traumatic. We waited two hours before they attended to her and she kept getting meltdowns and it was so hard to deal with that. When we got home I had to call my mother to come stay with us because I broke down completely and I didn’t trust myself around my girls. For the first time in my life, I felt like I would harm them and I would hurt myself because I didn’t know how to deal with the pressure of everything. Even after my wife died I didn’t feel like this. Thankfully, my parents were there for me and the next day my mom got someone to counsel me. Since then I have been trying harder to take care of myself because I know that I need to be mentally strong to raise my daughters and to give that extra care to Andra.”

Unfortunately, Anil’s situation is not the exception in TT right now. Sadly, it’s becoming too much of the norm as parents/caregivers of children with special needs struggle to cope on a daily basis. The main source of the struggle is the lack of income and opportunity to earn. When parents have to rely on savings or fall back on the goodwill of others, they feel a sense of failure; that they are bad parents/caregivers.

The World Health Organisation (WHO) noted that, “There are unique stressors and challenges that could worsen mental health for people with disabilities during the covid19 crisis.” This stems from the inability to access healthcare, loss of income, etc. For parents/caregivers who may be struggling through this time of pandemic, the WHO has the following guidelines:

- Stay connected and maintains your social networks (via telephone, e-mail, social media or video conference).

- During times of stress, pay attention to your own needs and feelings. Engage in healthy activities; exercise regularly, keep regular sleep routines and eat healthy food.

- Keep things in perspective. News reports can cause anyone to feel anxious or distressed. Seek information updates and practical guidance at specific times during the day from health professionals; avoid listening to rumours that make you feel uncomfortable.

- Help children find positive ways to express feelings. Every child has his or her own way of expressing emotions. Sometimes engaging in a creative activity, such as playing or drawing can facilitate this process.

- Maintain familiar routines in daily life as much as possible, or create new routines if children are at home. Provide engaging age-appropriate activities for children.

At a national level it is important for the relevant authorities to increase mental healthcare within the public healthcare system especially at this time with covid19. While this is not available parents/caregivers are advised to talk to someone about their worries and concerns. Anil noted, “If I did not talk to my parents and look towards them for help I don’t know how I would have managed. I really hope that if there are other parents who feeling like me, that they find someone to support them at this time.”

Dr Radica Mahase founder/director, Support Autism T&T