Should I Talk to My Child About Autism?

​As a counselor, working with young people with autism, I have often been asked by parents whether we should tell the child about autism? Is it really necessary? What will their reaction be? When is a good time to tell them? What is the right age to disclose this to them? What if they start using autism as an excuse to not do work and school work? and so on.

​I believe that there is no one answer to any of these questions. It is different for different families and many factors need to be considered while making a decision about speaking to the young person about autism.

A Case Story

I started having conversations with Rohan (name changed) when he was 6 years old. Rohan is this amazing boy who is very caring, has a beautiful smile and loves cars. He received a diagnosis of autism at the age of 3. Through the years, we have worked on exploring some of the difficulties he has been facing. But our focus was not ‘only’ on working on difficulties. We would speak about the things that he enjoyed doing. We would even speak about the things that he felt were his strengths.

My idea was to not look at autism as a ‘disability’ and consequently, my actions and conversations were led by that idea. 

Deconstructing Dominant Ideas

Some prior experiences I had in my work with young people experiencing autism made it very important for me to deconstruct the idea of disability. Experiences where young people did not take the word autism well. I recall how I was constantly on guard while working with a particular young person with autism because I didn’t know what his next move would be. ‘Will I get hit by him today?’, ‘What will happen in our session today?’, were some of the thoughts that played on my mind, when he would come to see me. This was because every time he came to see me, he was told it was because of his ‘Autism’. He was constantly told that if he would not behave, the ‘Autism’ would never go. Autism was portrayed as something bad, something he needed to get rid of which led to immense anger. 

Another 16-year-old young person I was working with knew about ‘Autism’ but did not want to speak about it. ‘It’s a bad thing’, he said.

These experiences made me wonder if the reason we did not have self-advocates was because of the idea that ‘Autism’ is not something to be proud of. It was an idea that did not fit with me because my experiences with young people with autism have been different from the idea of seeing autism as a disability. Certainly, there were difficulties, but beyond those was also a form of naiveness, a strong commitment of wanting to work on things, amazing abilities, creativeness, memory and so much more.

What Talking About Autism Made Possible for Rohan

Rohan is now 10 years old, he is pretty aware of the areas of strengths and difficulties. Along with his family, I had several discussions on when is a good time to tell him about the diagnosis. There was a lot of anxiety related to letting him know about autism. We went back and forth and took our time to decide the next steps. I thought it may be a good time to tell him because he had started questioning me about why he experienced certain difficulties which his younger sister did not. He had a growing insight about this and would ask me questions like, ‘she makes friends easily, why don’t I?’, ‘Why is it that I go for therapies but she doesn’t?’ He was looking for answers and I felt that he had the right to know about the autism. But I could understand his parent’s apprehensions as well. ‘What if he finds out and feels low about it?’, ‘What if he uses the autism as an excuse and stops doing the things that he’s currently doing?’, were some of the concerns they voiced to me. When I thought about these concerns, I also found myself thinking about the ideas that may be supporting these concerns. Some of the things that came to mind were ideas around disability and the idea that autism is not something that is ‘okay’. This made me realize that I need to deconstruct these ideas with the family before taking anything forward. Knowing that these ideas may be present guided my questions, which then helped me deconstruct the ideas with his parents and construct more possibilities for working with Rohan.

Today, Rohan knows about autism and has made his own meaning around it. It was a collaboration between all of us and him that allowed him to arrive at a meaning that fits for him. This way of thinking about autism has made it possible for him to make a choice of how he wants to place autism in his life. He speaks about how he is going to use the ‘good’ parts of autism and how he is going to work around the ‘bad’ parts of autism. He knows that some parts may be difficult but also knows that there is a way around it. He even mentioned experiencing the feeling of ‘relief’ now that he knows what is going on.

Looking back, I feel that the conversations with Rohan and his family became possible because we did not have a single story about autism. We were able to notice a lot of things that were diverse and that helped us build these other stories about autism.

Key Learnings

Some of the things that I have learned in my conversations with families and young people with autism and that may support more families while speaking to their children about autism are as follows:

• There is no one age to speak to children about autism.
• To create a culture of communication where trust and understanding develops.
• Children may not need all the information about autism at once. It is a conversation that will require re-visiting. It is important to create a safe space for conversations to take place.
• Demystify the autism. Speak about autism in a broader sense – one young person once told me how books, videos, the internet said negative things about autism, which is so depressing, she wished there were books, videos that said good things about autism. So to create a space where diverse conversations about autism can take place.
• To allow children to choose what they want to call it, what are things about autism they want to keep and what are things that they may want to work on.  

About The Author:

Jill Sanghvi has been with Ummeed Child Development Center since 2009. She a currently a counselor and training manager at Ummeed. Jill holds a Masters in Psychology from Mumbai University and a Masters in Mental Health Counseling from Pace University, New York. Jill has been drawn towards narrative ideas and practices since she started working at Ummeed. She engages in therapeutic conversations with young people and families experiencing disability. 

She is also on the resource committee of Forum for Autism, a parent body for people and families experiencing Autism. Jill is currently a Ph.D. student at Vrije Universiteit Brussel exploring lived experience and the social construction of Autism as a part of her research.