Mental Health in Autism Families: The Unspoken Reality
By Varshini Raaj | Published on July 13, 2020 | 3 Minute Read
Hi, this is Varshini Raaj, I live in Mumbai, India, and I have an autistic brother who is pretty worse in the spectrum. For those who might not fully know what autism is, autism by definition is a a serious developmental disorder that impairs the ability to communicate and interact. It impacts their nervous system and over all cognitive, emotional, physical health.
While this seems like an apt definition, as close family to an autistic child, I think it’s a lot more. Autism is something that not only affects the child but also his/her family deeply. My brother turned 21 this May. Raising him these past 21 years, while it was very enriching it was also very very hard. The amount of hardship and energy it took can’t be put into words. I remember I was 6 when he was properly diagnosed, and
while I didn’t understand the severity of the situation I understood that he needs all my love, attention and help all the time. And honestly, that is draining. Working towards providing for his needs every day is quite tiresome. Don’t get me wrong, there is nothing I wouldn’t do for my brother, but why don’t we ever talk about the mental health of the caregivers to these children? Having a child with special needs and disabilities, while we describe it as rewarding, in truth it can also be very very stressful.
These are kids with complex needs, navigating through them throughout your life is a task. Kids like my brother being on the worse end of the spectrum require ongoing parental support even beyond the age other kids become independent. So imagine, taking care of him which includes feeding him, bathing him, shaving him, putting him to sleep even at the age of 21. It can be exhausting and it definitely impacts on your mental health terribly.
There have been days when I have cried myself to sleep because I couldn’t take the pressure of raising him anymore. My parents even more so. Autistic families usually have a major obligation of caring for these kids (which also includes the management of several problematic behavioural changes of theirs) and are expected to balance it all and keep their stress under control.
Depression, anxiety in families with kids with special needs is so common. While they may not talk about it often because it may look selfish, it’s there, it exists. We try to be as selfless as we can be but if we are not selfish enough to take care of ourselves how can we possibly take care a child with special needs in all of our abilities? How can you help someone who is struggling while you are struggling
yourself? They require our best, our 100%. It’s definitely easier said than done, it’s hard to put ourselves first for a change because we don’t know what that’s like. But it’s needed.
The financial burden that is on us of taking care of these kids is major. The lifelong medication, the epilepsy treatments, occupational therapies, speech therapies, hospital visits are just some among many that are absolute necessities we need to spend on, not to mention the needs of his everyday lifestyle, This burden may negatively impact on the families mood and mental health.
My parents and I don’t get a day off, our whole lives have been about him and taking care of him and being there for him and his needs and in the process we forgot how
to be there for ourselves. Symptoms of parents and siblings depression and behavioural changes in these kids are closely intertwined. Catering to his needs is so overwhelmingly hard that it put us in a place of experiencing depression and anxiety and that affects us from being fully there for him and in turn affects his ability to grow, you see how this is a loop? Depression in families like mine goes highly untreated and in most cases, unidentified.
Something that always irks me is when I tell someone I have an autistic sibling, they say, “Oh I’m sorry to hear”, I don’t understand, why are you sorry? Why is this bad news? What are you sorry for? This doesn’t help us in any way. Instead a simple acknowledgment and encouragement to a struggling parent goes a long way. We don’t expect you to understand our problems, we expect you acknowledge the problem.
Change is very hard for these kids to cope with, my brother takes time to adapt with change, be it a new house, a new car, if we move around furniture in the house or even a small thing like a new bedspread on his bed. He’s been going through some major behavioural changes due to adolescence and different changes in his life and his mental health has been rapidly deteriorating these past two years. His body is going through changes he doesn’t understand. He’s become extremely aggressive and it’s been very hard on us to help him because watching him suffer is in turn killing us all the more.
My point is I need mine and my family’s mental health to be stable to help him through this. I want to be able to tell him I got him, with confidence. That his story is one of greatness. He is my first child, my first love and I would do anything for him and I want to be there for him in every way possible and for that we need to take care of ourselves in the process too, for ourselves, for him. And that in my opinion, is the most selfless act one can do.
It’s high time we talk about mental health in families with children with special needs, let’s all learn to be more empathetic and kind to one another. Let’s start important conversations on autism awareness. I hope I started one.
About the Author
Varshini Raaj is an art director, fashion designer, feminist, and animal lover. Most of her days you can find her day dreaming in cozy corners with a book or a movie. Ms. Raaj also believes that in a world where you can be anything, one should choose to be kind. In the article above she talks about her experience as a sibling to an autistic brother and the unspoken truth of such family dynamics.