Emma is a mum of two from the Midlands. She first started noticing signs of autism with Jack when he was just six months old, but it wasn’t until recently, aged 12, that he got his diagnosis. Here, Emma tells their story.
When did you first spot the signs of Autism and what were they?
From an early age Jack struggled with change. He was a quiet baby and was using a shape sorter with no issues from around six months old. For me, the early signs of autism we saw were this ability to match things. He would line his toys up repeatedly and hated any change to his routine. Jack was late to talk and very quiet. He hated any change and if he was expecting to go straight home from somewhere and I stopped at the shop, he would have a meltdown.
We spoke to the health visitor about our concerns who initiated some speech and language intervention. When Jack started nursery and school no setting could see an issue and dismissed any concerns we raised with them.
What steps needed to happen to get a diagnosis?
Jack masks very well within school settings. He is a pleaser and buries his anxiety until he gets home and then it all comes out. Throughout Key stage one, despite us raising concerns we had no support from the school. As he got older it became harder for him to conceal and by year four his teacher accepted our concerns and put him forward for assessment. The assessment only came in December 2024, when he was nearly 12.
How did you feel as his parent/carer when you got the diagnosis?
Getting a diagnosis didn’t matter to us as his parents, however it has freed Jack. By giving him a reason for why he feels so different he has been able to better understand himself a bit more. All we wanted was for other people and teachers to understand him and allow him time to come into his true potential.
Did you share the diagnosis with your child?
We have always been very honest with Jack. It was never something we wanted to hide from anyone. We have always told him that we think he is just wired a little differently and that the assessments would help him understand that.
When he was diagnosed we let him read the report and asked if there was anything he wanted us to do for him at home or school.
What kind of support have you been able to put in place for your child?
Jack started secondary school in September and we then moved him to a different school in February. Jack has faced huge changes which he has managed amazingly well. With his diagnosis he has had instant access to quieter areas and teachers are aware of his social awkwardness, so they try and support him where needed.
Without wanting to label him, being known as autistic has made it easier for Jack to not feel he has to conceal his feelings.
Do you feel that more could be done?
Socially Jack still struggles somewhat. We need more support groups that help our children interact with others. He tends to spend most days on his own. His little brother is his best friend, but we would love to see him mixing with likeminded children and enjoying their company.
How do you feel about the future?
I worry about university, if he decides to go, and loneliness for our boy. I desperately want him to find his people to feel comfortable and feel liked.
What advice would you give other parents?
Trust your instinct. You are your child’s best advocate; you know them best so if you feel something isn’t right then fight for them.
