Mother and son graduation photo, next to purple quote on green background

 

This year is the 10th anniversary of the Autism Act. This was a landmark in the battle to improve the lives of autistic adults and their families in England.

In these diaries, Helene, lead of the Nottingham Autism Partnership and her son, Jacob, one of our Young Ambassadors, reflect on their family history to trace the progress we have made to create a society that works for autistic people.

Jacob: In a way, my family is the history of the Autism Act. I look back in time and see how things have improved for autistic people and I see the story of autism laid out in my family history. In the past, I think people in my family knew they were different however they didn’t know how or why.

Both sides of my family have struggled with interacting with people. Autism diagnosis didn’t exist in the same way in the past but I believe a turning point for me and other people on the autism spectrum was the Autism Act. My generation understands how autistic people are different so we have been able to move forward. The next generation has the benefit of understanding autism as well as the life experiences my generation can offer so I believe we will continue to make progress. Although the Act can’t be perfect for everybody and there is still work to be done, the Autism Act got people to start thinking about who they are and who they want to be.

I believe there is a long way to go but the Autism Act encouraged people to get out there and try and make a society that works for autistic people. I am proud to be a part of that history.

Helene: Reflecting on the progress made in autism diagnosis since the Autism Act is a pensive undertaking. When I first learnt about autism in the late 1980s when I was doing my paediatric nurse training, I thought my father might be autistic. If autism was recognised at all when my father was growing up, it described children who were non-verbal. My father’s challenges were, and are, different. He finds social communication difficult, is anxious when faced with change and has a strong aversion to some foods. Objectively, this may sound like a stereotype, but it’s simply a description of my father. These days his challenges are compounded by Alzheimer’s and a knowledge of how my father experiences the world enables our family to adapt to meet his needs.

My son Jacob’s diagnosis of autism in 2006 is an example of changing times. Jacob was diagnosed when he was twelve. It wasn’t a diagnosis delayed by extended waiting lists or lack of understanding in health professionals, as many parents describe. It was a diagnosis that allowed Jacob to understand himself and give explanation to the challenges he faces. Jacob still uses the phrase he adopted at the time to describe his specific challenges, “it’s a spectrum thing.” As a health professional, you may expect my peers to understand autism and so may be surprised that a colleague reassured me that Jacob ‘didn’t look autistic’ and ‘wasn’t that bad.’ To our family, autism was always about difference, not disability. It’s taking society a while to catch-up!

Jumping forward another six years, autism diagnosis has improved again. My nephew, William, was diagnosed with autism in 2012, when he was five. With timely diagnosis comes the right support, at least in William’s case. William received an autism specific, parenting support programme for my sister and brother in-law and a space at a specialist unit at a mainstream school with staff who understand autism and recognise that often parents know their children better than professionals do. Knowing you’re autistic when other people in the family are also autistic has definite advantages. Stereotypes are challenged, aspirations encouraged and support built in. My sister’s friends were supportive but not always well-informed, commenting that William’s behaviour was no different to other children when it clearly was. I found it astounding.

I recognise that my family’s experiences of diagnosis are not typical. Arguably, middle class professionals find it easier to navigate services, pre- and post-diagnosis and can rely on colleagues for support.

As the Autism Lead for Nottingham, I’m working with partners to ensure that everyone has the same access to diagnostic services and the same opportunity for post diagnosis support.

Austerity is a challenge to this aspiration but there has never been more desire in my colleagues across the city to get things right.

Further information and how you can get involved

We, at the National Autistic Society, are marking the 10th anniversary of the Autism Act throughout 2019 and campaigning to make sure the Government improves support for autistic children and adults.

You can help by taking our survey and telling us about your experiences of autism services and support, so we can show the Government what needs to improve.

Take the survey