Living with Autism
Autism is a lifelong developmental condition which affects more than 1 in 100 people in the UK, according to the NHS. Like dyslexia, autism is a spectrum condition and is commonly referred to as ‘ASD’ (Autistic Spectrum Disorder) or ‘ASC’ (Autistic Spectrum Condition). Today, Picaroon Kim talks to 12-year old Freddie and his dad, who have kindly shared their experiences of living with autism.
Kim: Hi Freddie and ‘Dad’, thank you for agreeing to talk about what it’s like to live with autism. Even though you’re both from the same family, I imagine your experiences will be different. Freddie, I’m interested in finding out what it’s like to live with a diagnosis of autism as well as your dad’s experience of what it’s like to be a parent of a child on the autistic spectrum. Firstly, could you tell me how old you were when you received a diagnosis of ASD?
Freddie: I was ten and in Year 4.
Dad: While the formal diagnosis was in Year 4 we started the process to get the diagnosis about two years earlier. It takes a long time!
Kim: Oh, that is a long time! And what was it like getting a diagnosis?
Freddie: It made me feel better because it made me understand why I was different.
Dad: It really helped the whole family to embrace autism and start seeking more expert guidance and help. There’s so much you just don’t know about how to cope with things like meltdowns and triggers for autistic people. We’ll never stop learning!
Kim: That’s so interesting; I’m pleased to hear you got the expert guidance you were looking for. What were your experiences of securing a diagnosis? Was it hard-fought or relatively easy?
Freddie: For me, it took a long time to get there and when we finally did, it made me feel a lot better.
Dad: It took years to get a formal diagnosis. There was a 12-month wait between getting a referral to see the neurodevelopment team to actually seeing them! Even after the diagnosis, we didn’t really get any support until we got a full Educational Health Care Plan (EHCP) which took another 18 months... Be prepared to jump through endless hoops and battle a complex system.
Kim: Gosh, that sounds very tiresome. Thinking about your time at school, Freddie, how does autism affect your learning and social interactions?
Freddie: I found primary school horrible. I got bullied because I was different and I felt people looked at me differently. Towards the end of primary school, I couldn’t go – it was just too stressful and hard.
Now, school is amazing! In Year 7 I started at The Canbury School (a private secondary school for children with special educational needs) and it’s great! Everyone is different, so you don’t get bullied. There are nine people in my class with one teacher and two LSAs (Learning Support Assistants).
Kim: I’m sorry to hear you found primary school hard, but it’s great to hear you’re happy at The Canbury School. Can I ask how autism affects your home life?
Freddie: At home my life is great. However, I do get stressed a lot; I hate people coming over but I love being in my bedroom and relaxing on my computer, iPad, iPhone, MacBook, Chromebook, PS4 and my Apple Watch - yes, I love tech!
Dad: Freddie is able to be himself at home and uses technology to escape stress. It can be very limiting on the rest of the family sticking to tight routines and limiting travel and visitors.
Kim: Tech sounds like a great outlet for stress Freddie! Have you encountered any misconceptions about your condition that you would like to share and debunk?
Freddie: I hate when people don’t understand autism, it is wrong to think people like me are idiots. I am amazing at editing and photoshop, I’m good at coding and I’m amazing at all tech!
Kim: So maybe a future in tech is looking likely?! Are there any tricks you have devised to help combat areas you find difficult?
Freddie: Yes, in busy places I relax and breathe. When people come around I go and hide in my bedroom. I like to use systems: when I found it hard to leave our house in the summer I would count the bees on our lavender plant by the front door to calm down and have a tic tac before being able to leave the front garden.
Kim: They’re some really interesting techniques! Is there anything you would like teachers to know about autism to help them support other children who have ASD?
Freddie: DON'T USE METAPHORS WHEN SPEAKING TO US!
Kim: A clear, final message – thanks Freddie! And ‘Dad’, thank you as well; it was very insightful having your experiences.
To find out more about autism, visit the National Autistic Society website.