Paul and Emilia. ‘I want research to unlock her potential.’

Tell us a little bit about Emilia.

Emilia is a very happy, cheeky, smiley, affectionate girl. We get lots of cuddles! She is quite unlike how many people may expect an autistic child to be. She loves spending time outdoors, paddling in the sea or running about in the woods, and as a treat she loves to go to theme parks!

When did Emilia get a diagnosis?

Emilia was diagnosed quite early, at the age of two and a half. We noticed delays in her development early on, but the NHS were understandably reluctant given how young she was and maybe in part because she is a girl.

How did you become involved with Autsitica?

We took part in a study supported by Autistica at Birmingham University before Emilia had a formal diagnosis. They agreed with us that she was showing all the signs that pointed towards a diagnosis of autism and provided a letter which helped us to seek expedite a formal diagnosis. We were struck by the kindness and warmth that was shown to her and us as a family during the study. Emilia was treated exceptionally, which felt quite different to the experiences that we had with some healthcare professionals in the past. They really valued the unique charm that we see in her.

Since then I’ve completed two half marathons to raise money for the charity, and have committed to a third this summer! Not because I’m a fan of running – far from it, I just want to do what I can to raise money and awareness of autism and the need for research.

Tell us a bit about Emilia’s ability to communicate and learn and how you are helping her.

Emilia does struggle with communication, although she has about 60-70 words, so is significantly behind her age group but she can make herself understood which is very important to us and she certainly has no problems getting what she wants! She attends a special needs school (Five Acre Wood in Kent) with children of varying disabilities, although many have autism.

I had initial hangups about her going to a special school but the time it took to get a diagnosis was actually quite helpful in letting us as parents come to terms with the fact that schooling outside of the mainstream would actually be better for Emilia.

It also gave us time to do our research and find a school that would suit her, and we did – her school is wonderful and it’s the best decision we ever made.

The Ipad has been so helpful. She uses various apps to help her with coordination, problem solving, and communicating as well as to watch videos which she loves. It helps her to plan and predict her day-to-day life so that she can cope with the simple things that can make the biggest difference to her happiness. It has given her a sense of control which I think will stand her in good stead for becoming more independent in the future.

What concerns you as a parent?

Emilia is a happy and healthy girl but we have to be careful to spot any signs when she is unwell as she may not be able to tell us herself. She often seeks sensory stimulation and on one occasion we noticed that she was quite agitated, we took her to the doctor and had to be quite firm to get them to investigate further. We were right to as it turned out, she had put some foam up her nose and it had become infected. It’s times like these that you worry about ‘what if.’ Like many children with autism she hates brushing her teeth and the dentist is really unpleasant for her too. We’ve found ways of coping, of calming her down but I always worry about what would happen if we weren’t around to spot things that are abnormal, make sure she takes care of herself and gets the treatment she needs by healthcare professionals.

Tell us about family life with Emilia.

Emilia really is at the centre of our world, and of her 9-year old sister Madeleine’s. Obviously this impacts family life hugely, but we don’t know it any other way. If Emilia didn’t have the needs that she does its likely that my wife would have returned to work, but after-school and holiday-care is virtually non-existent, so this has never been an option. Her sister is extremely protective of her and completely understands her and her autism, which as parents is lovely to see. There are times when Emilia is unable to control her emotions, particularly when she is frustrated or frightened, this can be hard for us to deal with, especially if we are out – many people will assume that Emilia is badly behaved or that we are poor parents, and this means that we have to really plan any outing very carefully. We don’t have any social life to speak of, but stability, routine and a quiet life really suits Emilia and means she is happy, so that makes us happier and limits stress.

What role do you see research could play in Emilia’s future?

Although Emilia struggles in many ways, and may not have much speech, she has a very unique intelligence. It comes out when we least expect it, and if she wants or needs something she can go to great lengths to get it in the most creative and logical ways. I would love research to unlock that potential, and to help her deal with her emotions which could help her live the most fulfilling and independent life as possible, but most of all to be happy.

One of our parent supporters, Paul talks about his daughter, Emilia aged 7 and how being involved in an Autistica research study gave the family support they needed to get a formal diagnosis: