Hiral is a mum of two from Chelmsford. Her son, Rohan, was officially diagnosed with autism aged 5, but Hiral and her husband started to spot key signs when he was just three years old. Rohan is now 13 and thriving at secondary school, but it’s been a long road of having to jump around the NHS and navigating the school system to really push to get him the right support. Here Hiral shares their family story and her top tips, along with some tactics they have learnt along the way.
When did you first suspect signs of autism in Rohan?
We saw some early signs with Rohan. When he had the usual developmental tests aged two, there were several things he was falling behind on. His speech was slower to come through and he would take a long time to eat his meals.
We were referred to a specialist for formal Autsim diagnosis when he was three years old, but he was too young. We went away and did lots of research. This was nearly 11 years ago and we didn’t have access to the volume of information there is now. It also wasn’t so widely and openly spoken about then. Thankfully this has improved as time has moved on.
What was your experience with the NHS and accessing an Autism diagnosis?
We did lots of research and were fairly certain Rohan was autistic by this point. We tried to get an NHS assessment but even back then the waiting time was years. We were lucky we could get a private Autism diagnosis. Going down this route was a great step forward but we quickly learnt we also needed an NHS diagnosis to put the support in place for school. But having a private Autism diagnosis was a really good trigger for pushing the NHS to bring things forward and to get the SENCO and the school to listen.
How did you feel when Rohan was diagnosed?
It was hard at first, of course. But we did lots of homework and research to empower ourselves with knowledge. We were living in Devon at the time and there were very few specialists around who could really help and support us. I started looking at the best areas in the UK for SENCO provision and found Essex to have good resources and support, so we made the decision to move. At this time I found Families in Focus who were amazing. They really helped us to navigate the NHS and school systems and made sure we got everything Rohan needed. They were, and continue to be, a wonderful support for Rohan and our family.
We later discovered that Rohan also has avoidant restrictive food intake disorder (ARFID). This means he can be a very picky with what he eats and has very little interest in eating. It also means that he doesn’t pick up on his hunger cues so we do have to constantly remind and encourage Rohan to eat.
How did Rohan cope with primary school?
Working with the primary school we were able to obtain and EHCP and had full 121 support after he started his first year at school. We had chosen an infant school based on its excellent SENCO provision so were very lucky in that respect. Rohan thrives on routine and structure which makes school a good and safe place for him. Rohan is a very bright and intellectual boy and does really well with subjects like maths, science and computing, and loves chess and cricket. He is extremely kind-hearted but finds it difficult to form deep friendships.
When the time came to move to junior school we had some concerns. Rohan doesn’t always cope well with change and new situations. Again, we did lots of research to find the schools with the best SENCO support to help us decide which would be the right environment for him. We were extremely lucky that both schools were fantastic supports and Rohan did really well.
How did you feel about the transition to secondary school?
Secondary school was a slightly different challenge. It was really important for us that Rohan could go to a mainstream school. Again this meant lots of open day visits, stacks of research as well as asking others for their experiences at various schools. The advantage of having an EHCP in place is that you get priority over the school allocated, so we were again very lucky that Rohan was offered a place at the school we wanted.
Knowing that Rohan would initially struggle with the transition and change to our routine, we made sure he had lots of visits to the new school beforehand to give him time to get comfortable with it. We also spoke to the SENCO team to discuss what would need to be put in place to help him.
As a parent I found sending him off to secondary school very scary. Your instinct as their mum is to protect them from the outside world. But I also knew that we had to gently push Rohan and not protect him quite so much as he is very capable. For example, it would be easy for me to take him to and from school, but with our encouragement, he takes the bus. It’s just another step to help him become more independent.
Secondary school is very different to the primary years and it’s important that Rohan finds ways to navigate this. At home we have lots of very visual timetables and notes to help him stay organised.
What other support does Rohan have?
Rohan has had various types of therapy from speech, behaviour and emotional support. This has really helped soften his behaviour and emotions. Rohan can be very honest and direct with his communication styles and doesn’t always have a filter when he speaks. This can sometimes come across as not being very empathetic and he can miss social cues. Therapy really helps with this.
What effect does Rohan’s autism have on family life?
When someone in the family has autism it can have a huge impact on others in the household. Rohan’s sister struggles as she often feels that he is treated differently and allowed to get away with certain behaviours. She has had to learn how to play and engage with him.
As a family we try not to let Rohan’s autism stop us from doing things. Home is Rohan’s safe space so when we have plans to go out for the day or go on holiday, for example, we prepare him in advance. We explain everything beforehand and talk about what is going to happen in lots of detail so he can start to mentally prepare. Rohan adapts well to new situations as long as he is prepared and we’ve been able to enjoy some really lovely family holidays. Skiing is a particular favourite!
What does the future look like for Rohan?
I can’t imagine Rohan working for someone. I’m absolutely certain that he is destined to become a business owner and entrepreneur. He has so much drive and his ideas are amazing. I can see him running his own company at a very young age.
What advice would you give a parent?
Get a formal Austim diagnosis as early as possible. For us, getting a diagnosis was really important and we were lucky we spotted it early. Don’t be afraid to push the system. We had to be on it all the time and bang on lots of doors to get answers and move things forward. But I’m so glad we did as it meant that by the time Rohan started to school we already had a lot of things in place for him. There is heaps of support available but its about knowing how to find and access it. Talk to others in similar situations, use the school SENCO and do as much research as you can.
You can read other parents stories here.
