When my son Zafar was diagnosed with autism in 2014, I had nobody to guide me. I had moved from Sri Lanka to the UK in 2010 to do my Masters in finance. I was a student when Zafar was born in 2012. He wasn’t showing eye contact and he had sleeping issues. A typical child will say a few words, but at two years old, Zafar wasn’t talking. He wasn’t saying anything. There were family issues on top of everything else.
My ex-husband became domestically violent and so we separated. That’s when I started to really struggle with everything – with housing, paying rent was hard, and looking after my son alone was a horrible situation. I was alone, going through all the research into autism myself and trying to also find time to work.
At the beginning, when Zafar was diagnosed, there was nobody there to signpost or help with things like Disability Living Allowance, or things like how to find a specialist school, what’s an EHC (Education, Health and Care) plan - it’s a massive thing to learn. As soon as he was diagnosed, the hospital just gave me a bit of paper, no one helped with where to go for support. I was alone, trying to research autism and find time to work.
The specialist school doesn’t have the capacity to give Zafar all the support he needs
Zafar is now six years old and goes to a specialist school where he has an EHC plan and support with transport. The school is good and supports lots of complicated children. There’s some one-to-one support for some subjects, a therapy room, speech and language therapy, occupational therapy - but it’s really hard for me to always get all the therapies my son needs.
Even though it’s in his EHC plan, the school has no capacity. There’s lots of children and not enough teachers. Some parents get private speech and language therapy, but I can’t afford it. Therapists are charging up to £50 an hour. I can’t bring any therapies home to teach my son, because there’s no space in my temporary accommodation. If I had the money, I would pay for private therapy.
Other children who have private speech and language therapy have started talking, they’re understanding more, but my son is behind. At his school, the speech and language therapists and occupational therapists have lots of calming toys, which is helpful for Zafar because he’s very hyperactive – he’s jumping up and down and things like that. I would try and find the money to buy these specialist toys and equipment at home, but I’m in a studio flat and my son doesn’t have a bedroom, so there is no space for anything like therapy balls, and because I don’t have a garden, there’s nowhere for something like a trampoline.
I hardly manage the extra costs. I’ve been offered a job but can’t afford to work
I hardly manage. The cost of child care is really high. I have been offered a job at a law firm, have done training and a work placement with them, but in the school holidays it costs around £150 a day for child care. I wouldn’t be earning enough money.
With the extra money I get from the Disability Living Allowance (Personal Independence Payment), I can pay for my son’s activities and transport. But there are extra costs. Because of his autism, my son is on a gluten-free and lactose-free diet, which is much more expensive. If he eats gluten or milk, he gets hyperactive. But even gluten-free bread can cost around £2.50 and it’s hard to find nearby. These foods aren’t available everywhere and transport is expensive.
When Zafar’s not eating gluten, he is much calmer, and that affects my life. I want him to be much calmer so that I can also concentrate at home. We also have very high water bills because Zafar loves to play in the water all the time. He has two or three baths a day, sometimes as many as five because water calms him down. The occupational therapist advised that water pressure can relax and calm him. But because there’s no swimming pool nearby, I can’t always afford transport, so we’ll use the water at home as a therapy.
My electricity bills are also high because Zafar has the TV on so much. It’s hard to tell him not to do it, and I still have to pay the bills. I only concentrate on my son and cut my own expenses where I can Special shops, special food, special transport, that all costs lots of money. DLA is not really enough. It only lasts about two weeks.
Even without the speech and language therapy or equipment, I can only make it last two and half weeks at most. I do manage, because I’m an accountant, so I know how to financially balance my life and my son’s life, how to lower and cut down my expenses. But my shopping, my clothing, my treatment for me, or anything like that, I don’t think about that at the moment - I only concentrate on my son. I don’t have many people around me, but my friend supports me It’s really important to get support from family, friends, everybody. I don’t have many people around.
Helping other parents of disabled children find support they need
I joined Scope’s befriending service to help other families who’ve been recently diagnosed, because they often don’t know what to do, they’re isolated, they don’t have enough help, and so we’re signposting them to offer support.
After finishing Scope’s Befriending course, we all said we wished we’d had support like the befrienders, because when we were diagnosed, nobody was there to help us. After finishing the course, I’m now qualified to tell people where to go and how to get support.
That can be really helpful for a new mum who, when they get a diagnosis out-of-the-blue, doesn’t always know where to go, or how to get support. Now I’m happy, my son is happy, and he goes to school. We do get that financial support with DLA, which I won in an appeal by myself. I went through that battle in the courts and was really happy to win the case – I have done everything for my child.
Scope's new report, The Disability Price Tag, reveals the disability related extra costs parents and working age disabled adults face.
Read the report on extra costs and learn how you can support the campaign by writing to your MP.