Diagnosis: A Grandparent’s Perspective

At times, we are inclined to look at parents’ needs when it comes to autism/disability or the autistic person’s needs and aspirations themselves. However, I rarely find articles on grandparents and discussing their point of view.

I thought that it would be interesting to have an informal discussion with my parents to find out their perspective on having a grandchild diagnosed with 16p11.2 duplication and Autism Spectrum Disorder (ASD):

The Interview

Did you struggle to come to terms with your grandson being diagnosed with a chromosome disorder?


No. Life has challenges, and this was just another, learning about his disorder and autism. The key to it all is to have an understanding. With understanding, there is nothing to be afraid of.


No. There was no concept in my mind of any concern.

How did you feel when he had his ASD diagnosis?


I had no problem with his diagnosis, I just wanted to help as much as I could.


I was pleased that his behaviour to certain situations had been diagnosed and there was documentation available to help educate me to understand him better.

Did you have much understanding of autism when he was diagnosed?


Some, as a friend’s son had a diagnosis, but not as much as I have now.


There are employees at my workplace who are autistic, and I have gained a lot of knowledge from their strengths and weaknesses, which helped with the understanding of my grandson.

What is your perception of autism and 16p11.2 duplication now?


There’s nothing to be afraid of. Understanding the condition is key. How our grandson learns and sees things. Everyone on the planet is different, he just has a label of autism, but that doesn’t define his personality.


The chromosome disorder is complex and affects everyone differently. You cannot say what works for one person will work for another; everyone is an individual. More research is needed to help people understand autism, which will enhance society.

As grandparents, do you feel that there are services/people you can access and rely on for support?


I don’t feel like we need support as we are not his main carers. Our grandson has challenges, everyone has challenges.


I don’t feel that I need any support, it should be focused on the parents and children.

Have you ever found it challenging bonding with him?


I have never found it difficult to bond with him.


No, I bonded with my grandson from the day he was born.

Do you feel like you have to treat him differently to your other grandchildren?


Never, he is treated the same.


I treat all my grandchildren equally.

Do you worry about his future?


At the moment, sometimes I worry. But as more and more children are being diagnosed as being on the autism spectrum, more of the family members will understand. It may even become the new way of life.


I do have concerns about his future as some people can be ignorant of autism. More finance and research from the government is needed to help autistic people.

What would you say your grandson’s best qualities are?


His understanding and saying things as he sees it. His loyalty and the way he logically debates. Even I have had to admit at times he is right and has a point.


He has a great sense of humour and a good memory for detail.

Has he changed your outlook on life?


No, I was brought up to embrace other’s differences. It makes us better people. Nobody’s perfect.


All of my grandchildren have changed my outlook on life.

What advice would you give me?


Keep doing what you are doing. You are doing a great job.


With your endless effort as a mother to educate and help your son flourish into adulthood, my support is always there when you need me. Well done and keep up the good work that you are doing.

Do you have any advice for other grandparents whose grandchild is autistic or has a disability?


Accept and embrace their differences. You can learn a lot from their perspective on life. Learn about their diagnosis and how you can help and improve things for them.


Continue doing what you are doing and help with the challenges of life your grandchildren will encounter.


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