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 this blog, Arran Linton-Smith writes about his late diagnosis and the importance of preparing the next generation of autistic people for life and work.
I’m 63 now. But it’s only been in the last few years, following my diagnosis, that I’ve felt accepted and appreciated for who I am – particularly in the workplace.
I feel it’s now my duty to try to improve things for the next generation of autistic people – so that they don’t have to go through the years of confusion and uncertainty I and other autistic adults endured, and to make sure society and employers can benefit from their skills, tenacity and different way of viewing the world.
The Government’s upcoming review of the impact of the Autism Act is an opportunity to make this happen. That’s why I’m working with the National Autistic Society and a group of interested MPs and Lords – the All Party Parliamentary Group on Autism – to find out more about the current state of care and support for autistic children and adults – and what needs to change.
Take this survey and tell the Government what they need to improve.
What the Autism Act means to me
We wouldn’t be where we are today without the Autism Act. It gave autism a national profile across England and has had a huge impact of autism awareness, making sure that all local authorities and NHS bodies at least consider autism for the first time. But the Act hasn’t been implemented as well as it should – just look at how long some people are having to wait for a diagnosis and the autism employment gap.
When the Act came into force ten years ago, I had no idea I was autistic. I always knew I was different but, like many of my autistic colleagues, I struggled at school and left without any basic qualifications. I was lucky to get employment soon after but my career has been very bumpy – I’ve lost jobs, been made redundant and have had to re-invent myself many times – including qualifying as a nurse, working on exciting construction projects on Ascension, the Falklands. And I even worked in Dr Who’s Tardis!
I thought that I could always interact with my colleagues but I struggled with the banter and often ended up being the butt of jokes. None of us understood that my brain simply works differently.
When everything changed
My turning point was my diagnosis in 2012. Initially, I really struggled to comprehend and accept this news. Everything was suddenly different. I had to completely re-evaluate who I was, how I was and what I was.
But the worst thing was that I wasn’t given any help at all – or even prepared for this period of soul-searching. I was given the diagnosis and then left, which meant I had to completely rebuild myself on my own. I sought out help from the National Autistic Society’s helpline and eventually sought out counselling from a friend who greatly helped me.
When I eventually did come to terms with my diagnosis I decided to firmly take ownership of it and become openly autistic. For me it was the best decision I’ve ever made.
Although I was firmly advised against doing this by my own family, I eventually decided to disclose my autism at work. To my surprise everyone was so understanding and people started to realise that my different way of seeing things was a huge asset − I was able to spot problems and come up with solutions that weren’t even being considered. My team listened, we made some small adjustments, like excusing me from attending after-work functions which I found incredibly stressful. And together we were able to work even more successfully.
While I’m now in a good position and feel highly respected for who I am, what I am and the way I think, I know that many autistic people aren’t so lucky − they’re struggling to find work or to stay in work. There’s so much wasted talent.
What needs to change
There needs to be a fundamental shift in how our society views autism and autistic people – particularly from the government and decision makers. We should be embracing autistic people, seeing the huge contribution they can make to our society and workplaces, and committing to helping them to get there. This should be the aim of all autism strategies and it’s important to keep this end goal in sight when working to address the key barriers faced by autistic people:
long waits for diagnosis
lack of post-diagnostic support and advice
not enough understanding and support in schools and workplaces.
If we address these issues, we can help autistic people to take ownership of their autism and get support at as young an age as possible, so they can grow up knowing who they are and understanding their strengths and weaknesses too. Only in this way, can we help prepare them for life and work properly, equipping them with the resilience and skills they need to excel in this largely neurotypical world.
This is a two-way-process and means closing the neurotypical/autism employment gap – fostering understanding between autistic people and neurotypical people. This starts at school but continues at every stage of adult life, including setting up work experience for autistic students while they’re still in school and reducing the reliance on recruitment through the old fashioned job interview, which puts many autistic people at an instant disadvantage.
Any autism strategy, whether from the Government, NHS or local authorities, must recognise that each autistic person is different. We must get to know autistic people as individuals, rather than simply by their condition.
The Government’s upcoming review is a good opportunity to start making these changes, particularly as they’ve committed to extending the autism strategy to children for the first time.
I’ve seen first-hand the vast untapped potential of autistic people. I’m 63 now and want to make sure I spend my time doing all I can to help unleash this potential.
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.
Source – www . autism . org . uk