April is World Autism Month, a campaign to raise awareness and acceptance of autism. In Islington, it’s estimated that over 2,500 adults are living with autism and autism is the most common need identified in children with Education, Health and Care Plans in Islington schools.
This Autism Month, we’re sharing the story of Islington Carers Hub member Joanne, who cares for her two children with autism and other health conditions. Joanne’s son, 22, was diagnosed with autism when he was five years old. Her daughter, 19, was diagnosed with a rare genetic disorder and also lives with epilepsy and autism. Now at college and going to university, her daughter has been advised to seek a formal diagnosis for autism so she can access further support and help.
Early Signs and Getting Diagnoses
Detecting signs of autism and the path to diagnosis for Joanne’s children looked very different. She shared that the journey was more difficult with her son. “It was more challenging because he was my first born,” she said. “As a new parent, you’re learning as you go on.”
She began to notice signs of autism when he was two and half years old and was not yet speaking. Joanne’s son went through a long and demanding process of assessments. “From the age of three to five, it was intense… it went on for two years,” she said.
Her daughter’s journey was simpler in some ways, and more complex in others. Diagnosed with a rare health condition before birth, her needs were closely monitored from the start. Autism has always been a part of her condition, but as she’s grown older, she’s been advised to seek a formal autism diagnosis in order to receive more help and support at university. Joanne described the difficult decision she and her daughter are facing. “She has been through so much with all the assessments, the hospital appointments, I don’t really want to put her through another assessment,” Joanne said. “But if she doesn’t have the diagnosis, then she doesn’t get the extra help and support.”
Caring for Autistic Children
As her children were growing up, Joanne faced many challenges, including caring for her children’s different needs. Her daughter’s autism traits included a preference for order and organisation and emotional “snapping,” while her son’s surfaced as delayed speech, a dislike for socialising, a need for routine and, at times, aggression and outbursts.
Despite sharing a diagnosis, their needs presented in very different ways through childhood, reflecting that autism is not one-size-fits-all. As Joanne put it, “autism is a massive spectrum.”
Struggles at School
Joanne and her children, particularly her son, also faced challenges while attending primary and secondary school. “He hated school,” Joanne said. “He was sent to referral all the time because they didn’t know how to handle him, especially in secondary.”
Despite both her children having educational health plans in place, Joanne explained that she doesn’t believe teachers and staff are properly trained to deal with complex needs. “I don’t think the schools have enough information and knowledge,” she said. “There’s so many different conditions and I don’t think the teachers are very well educated on all the disabilities that are out there.”
Joanne and her son saw the difference training could make when one teacher took a three-day autism course and was better equipped to handle her son’s needs. “It was amazing and my son thrived,” she shared. “I think a lot of teachers need to do that because not every autistic child is the same.”
Caring for her Children into Adulthood
Today, Joanne cares for her children who are now young adults. The transition from child to adult services was very difficult for Joanne’s family. She noted a severe decrease in help and support once her son turned 18, which has been challenging to navigate especially as her son developed depression and other mental health problems as he got older. “He didn’t have counselling, he didn’t have his dietitian, he didn’t have his psychologist,” she said. “Everything just completely dropped.”
Personal Impact
Alongside caring for her children, Joanne has also had to manage the impact on her own life. The demands of caring leave little time and space for herself. “I miss work and I think being a carer, you do get lonely and you get isolated,” she said.
Joanne joined Islington Carers Hub a few years ago, where she’s gotten emotional and practical support, and attends carers events. She really enjoys the workshops that require her to share her experience of being a carer, what’s involved, the challenges but also the positives. “I’m doing the talks for the medical students at the church,” she said. “I go on and tell my story, which I love doing.”
Joanne has also found support at Centre 404, and sees a counsellor [is this with Islington Mind via Islington Carers Hub?], which she recommends to all carers. “I go to counselling as well when I’m having really low days,” she said. “The carers have to be in touch with counselling, I think you do need that because it is hard.”
Persevering Through Challenges
When asked how she’s overcome hardship through years of caring, Joanne shared an empowering message. “You have to keep going because if you don’t, then they’ve kind of won and you need to do what’s best for your children,” she said. “You will fight for your children.”
Do any of these themes seem familiar to you?
If you are a carer for a member of your family, or partner, do get in touch with Islington Carers Hub – 020 7281 3319, info@islingtoncarershub.org or add your details to the Contact Us form.
It’s a gateway to meeting a network of other Islington carers and local support.
Other resources for people with autism and their carers in Islington
Islington Carers Hub – Health Conditions
The Autism Hub Camden and Islington
