Lily* was diagnosed with autism a year ago. She was two years old when her parents first noticed signs of behaviour that was not ‘neurotypical’. Since then, it’s been a long road to reaching a diagnosis but with her parent’s persistence in seeking help and doing their own research, they were relieved to finally get what they already confirmed when she was 11.
Lily’s Mum explains the journey that they have been on and shares some useful tips for other families that may be in a similar position.
Tell us a bit more about your child and their diagnosis
We noticed that Lily struggled to socialise with other children when she started attending nursery. Nursery staff said she preferred her own company to that of the other children, and didn’t speak as much as they did. Our GP referred Lily for speech and language therapy, which appeared to help a little and she started speaking in fuller sentences.
Her tendency to keep to herself continued and this was also picked up by her reception teacher when starting Primary school. She was always happy to attend, and never appeared to be upset or distressed, but Lily didn’t make attempts to mix with other children, preferring to watch them play than join in.
What was your journey to diagnosis?
After several meetings with the school, Lily was assessed by an Educational Psychologist when she was in year two, who told us she wasn’t showing unusual behaviours. This came as a surprise and unfortunately made it very difficult for us to get any additional help or support from the school when we continued to suspect autism.
We continued to have meetings with the school SENCO and her class teacher, but her behaviour was brushed off as bad behaviour. After many meetings about our concerns, we finally managed to get the school to arrange for another educational psychologist to review her when she was in year six which resulted in her finally being recognised as autistic.
What were the next steps?
We were referred to RISE, an NHS service that provides mental health support to children and young people, but Lily’s referral got lost in the system. We eventually spoke to our GP who referred us to Clinical Partners. Six months later they were able to arrange online appointments for both me and Lily individually. It was a painfully slow process.
How did you feel as their parent when you got the diagnosis?
We felt torn between feelings of relief and concern. Given how poorly the Primary School had behaved towards our daughter and how uneducated the staff appeared to be, we feared for our daughters upcoming High School Transition. It was however a relief to finally have an answer and be able to carry out our own research through books and websites on how best to support her.
Did you share the diagnosis with your child?
Yes, we let her know that there was a reason why she had been struggling. We didn’t need to use any labels but simply used the diagnosis to help her.
What kind of support have you been able to put in place for Lily?
When Lily was first diagnosed there was a lot to learn and we felt we needed to utilise as many branches of support as possible. A close friend of mine is a counsellor and she happened to have a colleague that specialised in children with autism. We booked some sessions with her to give Lily a neutral person to freely discuss her questions or concerns. This really helped Lily as she was able to ask things in her sessions that she may not of felt comfortable asking us. Lily always came out of the sessions feeling positive about her diagnosis. They were a great help to us too.
How was Lily’s transition to High School?
We booked an appointment with the SENCO lead at the High School, who was fantastic and reassured us of both their knowledge of autism and the resources available to support Lily should she need it. This was very reassuring for us given our poor experience with the primary school.
I also bought several books recommended by autism support websites, some written by a teenager with autism talking about their life experiences. Lily found this very helpful as she was able to understand what living with autism is like from another teenage girls’ perspective.
What advice would you give other parents?
Educate yourself with as much information as possible. Work closely with your child’s school, arranging regular meetings to catch issues early. Utilise support groups, books and websites aimed at helping you and your child to understand and live with their diagnosis. We found these really useful.
*Name changed to protect the individual
