The Trauma of the Parent of an Autistic Child
In case you’re not aware: autism is a social behavior disorder. There are a few characteristics of autistic children: they will likely not know how to modulate their voice or actions, and – they are very sensitive. They often times react adversely to what they perceive as a sensory overload. To us, the noise that seems normal or routine, might seem impossible to deal with, or allow for, to the autistic child. Another significant characteristic of this trait is that it is lifelong. There is no known cure for it.
What this means for the parents is, they have to constantly deal with socially embarrassing situations. Both from their child, and from society. From the child in that the child might speak in a loud voice in a quiet, public environment, and attract attention, and from society, in that people might run away from the child because of the social stigma attached to special needs, particularly in India. These children, and parents, are rarely invited to birthday parties, or other social gatherings that other children are readily invited to. The parent of an autistic child feels that slight on behalf of her child, whether the child is aware of it, or not.
Another thing that these parents have to do is always be ‘on’: be constantly vigilant in case their child runs off, or tries to get out of a moving car. I know of a father who tried to keep a child from jumping out of a moving car, and got bit in the process.
These parents deal with constant emotional and even physical assault in executing their guardian duties.
Where parents of more conventional children can have down time, entrust their child to a caregiver, go watch a movie or a play, trust that their children are playing quietly, the parent of an autistic child has to be constantly vigilant, and are very concerned if they entrust their child to another, whether the child will be treated with respect and dignity, and they are also concerned for the caregiver, so s/he doesn’t suffer from burnout.
These parents also receive social displeasure. More often than not, people are not educated in terms of special needs or autism, and just assume the child is a brat who has not been raised properly, and instead of being understanding and compassionate toward the parent and child, express displeasure and censure toward them.
Besides being always ‘on’, these parents have to parent to their child for the rest of his/her life. With conventional children you know for the most part, one day the child will grow up, move out, get a job, and live an independent life. Where the active parenting timespan of a conventional child may be 21 years, the active parenting timespan of the parent of an autistic child would be around 60 years. That’s like running a marathon at sprint level.
There is one final concern I’d like to bring to your notice: the love and concern of the parent of an autistic child does not end with the parent’s demise. One of their biggest worries is: who will care for my child after I am gone?
Sometimes, one of the spouse leaves, unable, or unwilling to deal with this level of vigilance. In which case it leaves the other parent to be a single parent to an autistic child. I am currently providing somatic therapy to one such, and I cannot begin to fathom what she goes through on a daily basis.
The parents of autistic children are super parents. They go through trauma on a daily basis that is comparable to severe traumatic events, because they endure it every day for decades on end. Be extra, extra nice to them. Talk to them, talk to their child. Treat them with respect. Don’t pity them, don’t click your tongues around them. But do invite them for some coffee, and a biscuit. The universe owes them.