In 2018 after my M.Phil, for a brief period of time I worked in 2 different speech therapy centers. Soon after the assessment, the Speech therapist would tell me not to explain parents about the diagnosis. They say “parents don’t like hearing the word autism, they’ll never accept it.”
I wonder why it is so hard. Yes, no parent would like to hear it but if that’s the reality and there is no other option, then why not? I feel, we as professionals fail each time we hide the diagnosis. It’s not labeling the child but it’s called reasoning out the child’s behavior. Isn’t this what we are trained for?
Autism is a lifelong condition characterized by limitations in the areas of social communication mainly. These symptoms appear early even before the child turns two. Some are impaired mildly while some are profound. Sometimes with co-morbid condition of Intellectual Disability. But most of the times children with Developmental disabilities are diagnosed comparatively early because Autism concerns get ignored saying it is just a usual language delay or boys speak late or in simple words “don’t worry he’ll be fine”.
So what role does diagnosis and CONVEYING the diagnosis play?
There are many experienced professionals who do not believe in diagnosis. They feel diagnosis is like labeling and they shift their focus completely towards the interventions. That is all fine but there is a need to convey parents and I’ll tell you why.
Autism is like any other condition and when we openly talk about other health conditions like diabetes, why not about autism? If we first see it as normal and something that can be worked upon, the parents will feel more convinced and confident in handling.
It is a fact that parents find it extremely stressful to accept but there are other aspects as well. Sometimes the parent is relieved of the uncertainty about what exactly the child is going through. And they finally know that there’s a reason why the child behaves in a certain way.
Even before the child is born, they plan ahead for their future and be prepared and diagnosis is an irreversible change for them. They go through stages of shock, denial, anger, depression and finally acceptance~ which I would say is a healthy way of accepting the reality. They may get angry, scold us, blame self, but it’s all in the process of healing. That is where our skills come into picture. We are trained to handle it and help the parents running in search of cure, calm down, think and find the right interventions in the right place. It is not acute to focus on the cure rather a prolonged life condition.
Though they see it initially as a loss or threat, when information is provided and misconceptions are cleared, it is seen as an opportunity. They will start focusing on the strengths while working on the limitations. This entire process of acceptance helps parents readjust their expectations on the child and accept that though their child seems similar to other children, he has a unique way of functioning.
Most lives transform for better with the correct diagnosis, it helps people receive the right kind of help and support that would otherwise be denied. Be it related to education, finance or anything that improves the child and family’s quality of life.
Acceptance leads to realistic expectations, less stress on the child, creative thinking and, a flexible parenting approach. Now they know there is a reason why the child’s behavior is different. It is not because he’s pampered or spoilt but because of his condition.
These are few illustrative quotations from my dissertation on positive impact of having a child with intellectual disability.
Motivation to lead a better life = ‘If we don’t take care of us, we might become ill. Mentally ill is more dangerous than mentally handicapped, so I (mother) should take good care of my mind and body.’
Strengthened marriage = ‘…he (husband) was always work oriented but now he takes a break every day to think about the child and we spend time.’
Changed child rearing style = ‘I (mother) used to be very strict and always want everything to be perfect, now it is all gone. Now i am more flexible. This has helped my older child. He (older child) is liking the new me because of his brother’s condition…’
Education = ‘…I (mother) did a course on special education and now I teach him many things. Though he (child) doesn’t like me as teacher (laughs), I teach all by myself.’
I have seen and interviewed parents whose life has changed for good because of accepting their child’s condition. It will soon be published and you can see how many domains of life the child has brought positive changes.
Finally I would like to conclude by saying, every parent has the right to know about their child. A good professional relationship, adequate knowledge, timely information and empathy are those that can help the child and family in a longer run and hiding the diagnosis is definitely not one of them.
Ms. Jaishree. Krishna
M.Phil (NIMH), M.Sc (HCU)