My name is Jo. I am the mother of Ben, who is now 15 years old and who has a diagnosis that puts him on the Autistic Spectrum. I want to raise understanding of Autism and I've written this as part of the National Autistic Society - Too Much Information campaign.
It's not plain sailing by any means and being a parent of an autistic child while wanting to help your child and going through the process of diagnosis into this unknown world can be, and is, very scary.
The constant stares and tuts that you get from strangers along with the comments of 'Can't you control your child?', 'If he was mine I'd give him a good slap', 'I think it's time you leave as you are disturbing others' at the beginning were very upsetting. I'd find myself wishing I'd never had him. What on earth was I thinking? This is how a few words can make you feel. It's taken a very long time for me to have the confidence to take him out without my husband or daughter. When we moved up to the Newcastle Upon Tyne area 6 years ago I felt like we had a new start as no-one knew us.....but again the same comments came......
Over the past 15 years, my family has almost got used to strangers staring and making comments - it still hurts but we've grown thick skins. But we've also seen the difference that public understanding can have. It's important for people to understand that their kind words and understanding have a much deeper impact. This is why I want to tell you of my experience of the kindness that one stranger showed us four years ago. I still get emotional when I think about this.
After a trip to the cinema at the Metro Centre, we went to a toy store but Ben became upset when they didn't have the exact bear he was looking for. All children at that age would be disappointed but his autism means that this can quickly escalate to a meltdown. So we quickly started walking to the nearest exit so he could get some air and calm down.
But the crowds, bright light and range of smells became too much and he became overwhelmed. Ben lost control just as we left the shopping centre and arrived at the bus stop and he started kicking me, shouting and swearing.
People who were queuing for buses started to stare, some even said really hurtful things. I can't quite remember what they said but it wasn't nice - negative words don't stay in my memory for long. This upset Ben even more and he ran off into the bushes. I went after him but he refused to come out, shouting that people were staring at him and continuing to swear at everyone around him. I just wanted to cry, for the ground to swallow us up. By this time I had managed to get hold of Ben on the floor and into a restraint hold that an Occupational Therapist had taught us to prevent him from hurting himself or others.
Then I heard another voice from the crowds, saying something along the lines of 'What are you doing? Do you not understand? Have you not heard of autism?' The stranger made her way over to us and knelt down before Ben. I was worried he was going to kick her but she managed to calm him down and helped us back to the car. If you know the Metro Centre, its quite a walk to the Yellow car park with a distressed child.
I was so grateful that I was in floods of tears and wasn't really following what was going on but I remember her saying she worked with autistic children. Still in a daze, I thanked her and must have driven off. It's still one of my biggest regrets that I didn't ask for her name and stay in touch so I could thank her properly.
If she's reading this, thank you so much. You'll never know what a difference you made to us, just knowing that there are people out there like you who understand.
Thank you for reading my blog. If you would like more information about the National Autistic Society's Too Much Information Campaign please follow the link.