My story as a parent of a child with Asperger's began when she was 3yrs old, although I wasn't aware at the time. Shortly after her 3rd birthday it was Halloween and I noticed a change, she was petrified of the noises, not just fireworks but animated decorations too. I found it strange as she had been a very laid back child until then. This progressed and she became very timid, afraid of her own shadow. She had lots of little traits that I just put down to her own wee personality eg. an obsession with cats, collecting, a love of soft fabrics, plus many more. She found it hard to make friends and preferred my company most.
When she was 7yrs old, I had a seizure at breakfast time and woke up to find paramedics in the house. I'd had a bad fall during the seizure & lost a lot of blood from a head wound. My daughter and her 11yr old brother were alone with me. They were petrified and managed to get help from the neighbours. It was after this episode that I noticed the biggest change in her. She became even more clingy (understandably) and lost a lot of self-confidence. This was the start of our journey through the mental health system.
Her school play therapist thought she might have dyspraxia as she was very uncoordinated, would trip over her own feet, had problems dressing etc. She got extra help in school, her teacher was amazing. Her mental health was also deteriorating. She started to self-harm at age 10. My world fell apart. Her Dad was extremely unsupportive, wouldn't or maybe couldn't admit that there was a problem. I was left to take care of everything including the extra help she needed at home. We were referred to CAMHS and it was at one of these appointments that Autism was first mentioned. When they described Asperger's to me it was my lightbulb moment. They were describing her. I would like to say that things progressed quickly..but unfortunately not. She wasn't diagnosed until just before her 13th birthday. (In the meantime I had the nightmare of trying to get her a Statement and finding her a secondary school with good special needs provision). Following my seizure, it appeared that she had a form of PTSD and it was more difficult to diagnose her. Her anxiety was horrendous. My heart broke for her. It's hard enough dealing with these emotions as an adult, never mind a child.
I was watching The One Show one evening, they featured a little girl who was uncommunicative but loved cats. Her parents did research & discovered a breed of cat called Maine Coon that might help her. The little girl progressed so much with the aid of her special cat. I thought this might be just the thing! I would have done anything in my power to make her happy. We had to travel nearly 200 miles to get the kitten but she is sooo worth it! I just wish I'd known years ago. She calms my daughter down so much and has been a godsend. Once the diagnosis finally arrived, things moved pretty fast. We had a name now and a road map going forward. She hates being labelled but it has opened doors to support. It's hard being a teenage girl trying to fit in at the best of times and she just wants to be 'normal'. I tell her that nobody is normal! We don't know what goes on behind closed doors. She didn't want any of her friends to know about her diagnosis and hated talking about it. A few months ago she got upset by a lad at school making fun of Autism. She asked me to take a photo of her with her diagnosis letter & sent it to him. I couldn't have been more proud of her!
Things haven't been easy these last few years for her, a teenage girl with hormones and Asperger's, but she seems to have come to terms with it. She has discovered a TikTok community of 'Aspies' and will laugh along with them at their own traits. We now know how to handle her difficulties, so much so that it's second nature. I try to be 2 steps ahead of her to avoid any meltdowns. Her brother is amazing with her, he is so patient. We couldn't have got through all this heartache without such an amazing, supportive family. I try not to look back to that time when she was 3yrs old, to think of all those years wasted when I could have helped her more. I'm comforted in the knowledge that it's notoriously hard to diagnose girls as they hide it so well. She is the most amazing girl and is totally unaware of it. Asperger's just makes her all the more special to me, especially when I see how hard she tries every day.