Information for grandparents on autism and how to help support the family

In Pakistani communities, Nani, Nanas, Dadi and Dadas, have a very important role in shaping their grandchildren’s lives.

If you are a grandparent with a grandchild who is born or later diagnosed with a disability or a health condition, you will need to provide help and support to the family while dealing with your own emotions on the news of your grandchild’s condition. The same will be true, if your grand child is diagnosed with autism.  There are many ways in which you can help.

The first thing you can do is find out more about autism.

Grandparents perspective

I’m glad I can understand a little better now and give my grandson some space. I keep a bedroom free for him with curtains closed so he can have some down time when he wants.

Grandparent’s perspective

My granddaughter has made me a better person. 

Grandparent’s perspective

When my daughter first talked to me about autism I didn’t know what it was. I didn’t understand the problem. She wasn’t in Pakistan and I thought its because other countries don’t understand children. All children speak late. There were several people like that in the family. And all children don’t listen. It was my daughter’s first child and I thought it was normal. Then they came to stay over the summer and I realised that my grandson was different. I couldn’t explain it but I knew he was. I didn’t know how to make friends with him. All the things that my other grand children enjoy- food, TV, going out- he didn’t. I watched him for a long while and then tried to do the things he liked doing. He loved going out on the swing in the garden. That’s what we started doing together. After a month, he would come, take my finger and lead me into the garden to swing. That became our time together. That is how we became friends.

Grandparent’s perspective

How to support the family

Provide support to the parents during the diagnosis stage

Going through and accepting the diagnosis of autism will be a difficult time period for the parents and larger family. Every parent will react differently but during the initial stages it will feel like a grieving process and sometimes they will look for something or someone to blame. As a grandparent you can acknowledge these feelings. If you respond positively you can also help the  parents and extended family members adjust to the situation.

our-small-wonders-grandparentsAvoid blame

You will also need time to process your own emotions about the diagnosis. Like parents you may also need to find something or someone to blame. This can be a natural reaction. However, it is important to remember that there are currently no known causes of autism except that genetics plays a role. The parents may be experiencing feelings of guilt and blame as part of their grieving process and your reactions may add to these feelings. These negative feelings will prevent parents from accepting the diagnosis and finding ways to support their child.

Don’t avoid the topic

Every family will process the diagnosis differently. You may feel that the best thing to do is not to talk about it for fear of upsetting the parents or anyone else in the family. You may feel like you don’t know enough about autism and you don’t want to say the wrong thing. While it is not important to force the topic, it is important to surface it when the time is right with the parents so they don’t feel you have not accepted the diagnosis. Your positive response to the diagnosis will help the whole family adjust.

Offer practical help

Your child’s marriage and mental health need as much attention as does your grandchild. You can offer practical help: providing food; looking after your grandchild or looking after siblings.

Follow the parents

Grandparents may not always agree with the children’s parenting approaches. If you are the grandparent of an autistic child however, the routine and structure set by the parents may be very important for your grandchild. When looking after your grandchild follow the diet, bedtimes, routines and communication guidelines set by the parents. The change from routine may be too much for your grandchild and they may struggle to cope.

Play with siblings

So often, life at home is centered on the child with special needs that siblings can get overlooked Special days away or planned activities with  your other grandchildren may give be an opportunity for them to get individual attention.

Do not attempt to “fix” your grandchild

You may think based on your experience of raising children that you are able to “fix” your grandchild. This may be their “autism” overall or any of the symptoms e.g. any tantrums. Autism is a complex neurological condition with no known cure. There are no “easy fixes”.

Do attempt to understand your grandchild

What you can do is understand your grandchild, their needs and interests. The more you understand them the more you will be able to develop an independent relationship with them. Learn. Laugh. Have fun.

Love, love and more love

All children sense love and belonging. This is no less true of autistic children. You will be an important and special source of love in their lives and later on, advice and guidance. Make it count.

5 Practical tips for grandparents

1. Make a special space for your grandchild creating an area that they can retreat to when they are visiting you. This does not have to be a large space, it could be a drawer, a corner of a room or an outside part of the garden. You can mark the space with a few of their favourite things. Don’t spend too much money in creating something based on their current “strong interest”. Their interests do change!

2. Create a special routine for when they come to your house. This could be a few things that you always do with them when they first come in the house, like holding their hand, taking them to the special space you have created for them, reading a book, counting the flowers in the garden, feeding a pet, whatever they need.

3. Talking them through any changes. On some special occasions, like Eid, dinners or weddings, your home may feel different for your grandchild. You can talk them through the changes beforehand so they don’t feel overwhelmed on the day. You can create picture stories of what will happen or show them pictures of past events on your smart phone to remind them of how it felt at the last special occasion.

4. Have lots of pictures of the broader family around. If your grandchild shows interest in them, then teach him/her the names of the people in the broader family. This will help your grandchild connect better with aunts/uncles/cousins when they are ready.

5. Have their favourite foods to hand. (Although that is one tip I don’t think we need to give to Pakistani grandparents!)

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