“A diagnosis isn’t the end, it’s a new beginning”
Throughout October, we’re sharing families’ experiences of diagnosis. Mum Carla shares her blog about her son’s diagnosis of autism and ADHD:
Charlie’s diagnosis:
“We’re a small family: myself, my husband and two children, Ava who is 12 and Charlie, age 10. When Charlie started school at five, he had a few challenging and unusual behaviours.
“School called a meeting and suggested he should have an autism referral, and were keen to get the ball rolling. We spent several months gathering all the information the medical staff needed for a diagnosis and once our referral was in, all we could do was wait. This was a long wait, filled with all the ‘what ifs’ and thinking about what would come next.
“When our day arrived, we took deep breaths and headed to the clinic. The staff were so reassuring and supportive, I felt a wave of relief. We were soon called through and the consultant confirmed what we already knew, but were worried about hearing.
“Our son has autism and ADHD – my boy, my Charlie. Although I expected this, I still found myself hit with shock and grief. I say grief as I was grieving the future that my mind had laid out when Charlie was born, and shock- was this actually happening?
“The next few weeks were a struggle, wondering how to tell people, what this means for his future and, quite selfishly, mine.”
Finding our feet:
“As I came to terms with his diagnosis and started to open up, I found an entire world hidden away that I was completely blind to. I soon made friends with supportive people, joined groups and found so many children who were just like my son.”
“I had a wealth of knowledge handed to me by the autism community, from support at home and telling friends and family to finding the right school.”
“I say to anyone on this journey, a diagnosis isn’t the end, it’s a new beginning.”
“Now, Charlie is amazingly settled into a Special Educational Needs school. His teachers are supportive and not just to him, but to the whole family. He has taken part in school adventures, on and off-site, with school support, and is thriving in his learning environment. His achievements haven’t stopped flooding in and we couldn’t be prouder.”
Telling siblings:
“We weren’t sure how to tell Ava, we just knew we had to tell her. I remember feeling like I’d let her down and not given her a sibling like her friends had, and I felt I had to tell her this wasn’t my fault, or my plan.
“I wondered if she would understand. We decided to be as open as possible, in as child-friendly a way as we could.
“I picked her up from school one day and took her to her favourite place for dinner. After hearing all about her fun-filled day, I asked her if she knew much about disabilities, and how different disabilities affected people. I was taken back by her understanding and willingness to understand more.
“I asked if she knew about autism, and was surprised that she did. There were children in her class, who in her words, ‘understood differently’. I was stunned, but let the conversation continue. She told me there were children in her class like Charlie. My jaw dropped. Really? She told me that the TA had been talking to them about playing and not being upset when they didn’t play, or if they were moving at carpet time that it was okay, as long as they’re not hurting anyone.
“I can honestly say at that moment in time, I was so thankful to the school for being open to the children about disabilities.”
“It made something that I kept myself up worrying over an absolute breeze. Mrs J, Thank you! After a few years of learning about ASD and watching different children. I realised Ava was also on the spectrum and she was diagnosed this year.”