What do you do when you find out that your grandchild is autistic? We spoke to Mary about her experience as Granny to Charlie
When did you suspect that your grandson was autistic?
‘It was when his little sister was born, so he was about two. He scaled the kitchen cupboards like Spiderman and I thought, I’ve never seen a child do that before. I have a relative who is autistic so I had some understanding as to what it was all about. I had felt worried. Charlie was not a cuddly baby. If you tried to cuddle him, he would scream the place down.’
How did you feel when you knew the diagnosis?
‘It was heartbreaking to see my daughter go through all this. It’s a lifetime condition, isn’t it? I was still working so I was not helping as much I’d have liked. But I accepted it and I felt confident when I was with him. My daughter and I did a SPELL autism awareness course early on, which was an eye-opener. We came out in floods of tears, because it makes you realise what the child must be going through.’
How did you like to spend time with Charlie?
‘Within reason, I gave him the space to do what he wanted. My house was quiet, with no other children running around. He liked drawing, cooking and making things with Lego. I didn’t challenge him. I let him be Charlie.
‘He loves cats and he would focus on my cat Tizzy. I even taught him what I enjoyed – knitting and sewing – which he loved. His hands sometimes used to tremble and these things calmed him. He loved going to the beach, although he always had to be doing something, winkling, rockpooling, climbing.
‘It was a matter of not being on his case all the time, not having rigid rules like making him sit down to a meal, not even on Christmas Day’
How did you cope?
‘I find I can pace myself so I absorb it slowly and I can deal with it. I think for those who haven’t had any experience of autism, it must be a shock. I had a front door key to my daughter’s house so I could let myself in if I needed to. Her husband couldn’t always be running back home from work every time an extra pair of hands was needed. Charlie has changed over the years, but we have learned as well. Now he is a teenager he won’t come to my house any more because I don’t have Wifi!’
Is it harder for the older generation to accept that autistic children are not just behaving badly?
‘Yes. You’ve got to be around an autistic child to understand, and it doesn’t take you too long to learn that they’re not just being naughty. The horrible bit is other people’s reactions. It can be really hurtful. There can be tuts and comments from people out and about and it tends to be from an older generation.’
What’s your advice to other grandparents?
‘I think it’s just a matter of always being there. If I can help, I will. And understanding autism is important.’
What do you think would be useful for other grandparents?
‘I think there’s a great need for a monthly drop-in coffee morning for grandparents. And I think SPELL courses geared towards grandparents would be really useful.’
*Mary’s daughter Catherine adds: ‘Mum’s our only family support. I couldn’t have gone through it on my own. Charlie was different with Mum to when he was at home with me, as children tend to be with grandparents. There were many times when I phoned her for help, in floods of tears, sometimes when Charlie was throwing things at me. And she has always been there for me.
‘I imagine it is doubly hard for a grandparent, watching a grandchild that you love going through it, and watching your own child that you love going through it.’
Read more here on the role of grandparents, and some recommended reading from the NAS.