This article tries to look into understanding of parents self blaming for their child being autistic.
“Long long ago Where nothing was there And God bored with himself. He [sic] made everything. Then he got bored With everything that was perfect And so planned to make some distortions. So he made some like me, Who as they say have lost their minds. As I sat on the swing in the playground, The teacher’s words tossed in the air Like bubbles of soap all around me. I did not play with them by waving them away. But I tried to feel them by waving them in and out When I walked out the classroom The tail of words followed me Words made of letters Crawling like ants In a disciplined row.”
This is an excerpt from the book The Mind Tree, written by Tito Rajarshi Mukhopadhyay
(2011), covering instances of himself when he was around eight to eleven years of age,
was born and diagnosed with autism.
This insightful and beautiful excerpt by Tito not only gives us a light into the minds of the child with autism, their struggles, their thinking and their spring of happiness but also it enlightens us with the relationship such a child might have with his mother, especially the phases of being unrelenting, tenacious and persistent force that relationship might have.
Parents have a colossal role to play, they act as the caretakers of a child and eventually
are responsible for all major decisions throughout the child ‘s developmental years. This
tremendous responsibility that befalls as a role of being a parent, also comes with
feelings of guilt and shame (Shandler, 2016). This is evident especially when there is
concern that “the parents have made mistakes with regard to their child.”
In a child therapy centre, “when parents of children diagnosed with autism go far lengths and their only objective is to improve their child’s social engagement and motor skills , seeing a father, who accompanies his son to the centre for more than five hours every day, making his son walk around in the waiting area to get him some extra motor movement practice, mothers breaking down in front of the psychiatrist while talking about the diagnosis of autism, or the challenges that they had to face while raising their child and fathers, belonging to lower income families, saving up every penny to pay for the very expensive interventions at the clinic.”
It gives an immense realisation of the effort that caregivers and parents put in taking care of the child which is unimaginable and vehement. Parents of children with Autism are highly vulnerable towards developing feelings of overwhelming guilt. The gravity of “right decisions” in phases of life, can heightened the level of “personal responsibility” especially when decisions are itself in question. Thus self-doubt and guilt is not surprising when it comes to this group.
Since the condition was first recognised in the 1940s, “parents have been and felt blamed for their children’s autism.” Autism was first recognised in the era of psycho analytics, when it was understood closely in terms of relationships to explain mental illness and disabilities .
The Childhood “autistic withdrawal” was thought to “be an emotional and relational problem.” The Blame was on parents for their children’s autism because the analysts described relationships as cold, detached and blamed parenting as the cause of their extreme withdrawal from the social world. However autism is now understood to be impacted based in biology, the impact of how the brain develops.
Yes, children with autism have social interaction and communication difficulties but it’s not just parents who have trouble engaging children with autism. The same goes for extended family members, family friends, teachers, professionals and other children too. And thus whenever anything goes wrong, parents have a tendency to place blame on themselves. But It is very critical to understand that Autism is not caused by something that you as parents did or did not do. It is neither your neglect nor it is your fault. because you care about your child enough to find out how to support them best. Yes! there will be days of immense hardship, but don't let the bad outweigh the good.
Autism does not define who your child is. Your child is so much more than that, this child is like others, is full of joy; who sees the good in everyone and their laughter is contagious. And maybe this child will become a leader, will drive a car, and will get married to someone who would love the way you loved. It is not abnormal to expect too much from your child, as parents it happens. But that does not mean it is your fault, it is no one’s fault. It is not even a fault.
It is also not surprising, that as parents you might feel burdened with everyday responsibility of caring for a child with autism, pressured to become an autism expert and learn everything overnight and worry about the child and family’s future.
And not only that you might face difficulty finding balance and time to manage the household ,your marriage and might feel less inclined to share your feelings and might be stressed about the family’s finances and the unknowns of the situation. It is also very important for you as parents, to take care of yourself, give yourself time to adjust, and make time for yourself as well.
In between all of this, it is very important to acknowledge what you have accomplished. It’s easy at the end of the day to think about all the things you haven’t been able to do that day and feel guilty and this tends to discourage. But focus on the positive, acknowledging the fact that your child is progressing today because you made an effort.