I’ve almost taken a mini-sabbatical since my last post. Hope you are all safe and doing fine. While we are all battling the Covid19 pandemic, I quietly took this time as an opportunity to spend time with my kid, Aarish. It is not every day that you can get some time with kids these days. So, I’ve just spent some time together during this lockdown in India. This post is also written in the same context to just provide a basic awareness of autism and of the emotions of autistic parents.
2nd April is World Autism Day and April is World Autism Awareness Month.
I never knew anything about Autism until three years back when my son got diagnosed with autism. Autism is a developmental disability that manifests during the first three years of life and persists lifelong although symptoms may improve over time. It is a neurological disorder affecting the functions of the brain and can occur along with full-body apraxia. Apraxia is a motor disorder caused by damage to the brain in which the individual has difficulty in motor planning and coordination of his body to conduct any activity.
It is not very clear why autism happens but it seems to be a lifestyle issue as autism has become increasingly common particularly in the last twenty years. Research points to certain causes of autism so far which saw correlations basis certain studies, and they are as below.
- measles, mumps and rubella vaccine
- gestational diabetes and sugar issues during pregnancy
- Fragile X Syndrome
- Genetic Issues
- Having issues of mental problem history in family
- low birth weight
- having exposure to metal and environmental toxins
Experts advise parents of autistics to accept, understand and love their autistic children. While all parents absolutely love their children, it is easier said than done to surf the wave of autism for any parent. It is something that is very difficult to accept that your child is autistic and truly understand his behavior in all aspects. I will say it almost feels like close to impossible and a huge punishment to the parents and the child. Almost nobody can really understand it truly unless they have a child with autism. Eventually, you will start the journey.
I think acceptance is the biggest challenge for parents. With regards to acceptance, there are two kinds of acceptance required, one to accept that the kid has autism and that this is going to be for his lifetime and the other acceptance is that “my” kid has autism. Both these are extremely difficult journeys for any parent. I personally don’t think I have still accepted it completely, even after three years into this journey. When parents hear about it, it is almost like they have to go into an ocean and learn to swim while on the go. It gets overwhelming with different terminologies, temper tantrums, autism meltdowns, therapies, relatives, friends, fights between spouses, parents, marital issues and a whole lot of affairs. This is exactly like fighting the ocean, you will fight initially with a lot of emotion and then you will slowly start to understand that this is not going anywhere. You will start to accept it as you go forward and learn to live with it as a part of life. But every now and then you ask yourself, why me and why my kid, especially when you see all your other twelve cousins with happy kids. But, every time you get that question in the mind, you also think that if there is one biggest sufferer of all of this, it is the kid. For no mistake of his, he now is handicapped in various ways and cannot experience life the way we all freely experience and that acceptance will serve as a basis for all understanding to come.
As time goes by, you will start understanding the kid a lot. You will observe that having a friend will be a big challenge to your son. So, you will start filling that role of trying to be a friend. After all, every dad wants to be a friend to his son. As I mentioned earlier, there is nothing wrong that the kid has done and is suffering for nothing. So, it makes us more responsible to really understand him within his own context and teach him or her about the world from his or her eyes. Eventually, the hope is that things will fall in place and that things will be fine. But time and again, every autistic parent asks the ultimate question: what happens when we become old and he becomes big? Will he be able to take care of himself? That is a question for which you will not get any answer easily. My learning is to park that question to the distant future and focus on the present and the near future and see where life takes us.
I think love is the easiest part as it is natural to love your kids. It just comes from inside as you see them as a reflection of yourself. But, both accepting and understanding is a very long and cyclical process. On some days, you will accept him and on some days you will not. Similarly, on some days you will understand him and some days you will not understand him in frustration. But, you will always love him. He is your best.
Be nice to autistic children and their parents, it is my humble request. They are already in a lot of emotional upheavel.