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, Trevor Wright looks back at his own diagnosis and involvement as the Autism Act Lead for his local authority. 

I didn’t know I was autistic when the Autism Act was passed in 2009. I knew that I had felt an ‘otherness’ for most of my life and when the diagnosis came in my mid 50s it was, overall, a positive experience. But I do wonder if I would have received that diagnosis without the Act.

My story

TrevorMy diagnostic assessment came about because I was working in social care and was asked to take over as the statutory Autism Act Lead for my local authority in 2013. Off I went to multi-disciplinary meetings with the city, county councils and clinical commissioning group for autism.

As well as discussing strategy, those in the room talked of individual characteristics and behaviours (anonymously) of people that they had come across which at first was interesting and then worrying as I slowly started to recognise myself.

This happened in three consecutive meetings and after the last one I went home, did the AQ 50 (an autism screening tool), scored significantly over the threshold and self-referred myself all in the same day. The irony of someone finding themselves as an autism lead is not lost on me.

I’d always wanted to do creative things like sing and write but could never quite manage the spoons to go and join in with other people. Once I knew why I’d struggled to do so, my autistic logic came into its own and I worked out ways in which I could get involved.

I’m now a member of two choirs (mostly standing at the back of course), participate in several writing groups, read my work at poetry events and published my first collection (Outsider Heart, Big White Shed Press) in 2016. My resilience has grown and my anxiety levels become more manageable.

What the Autism Act means to me

Part of this is due to the establishment of the Autism Act, the subsequent awareness raising, minimum standards and the joint working that the supporting guidance has fostered. But this hasn’t necessarily been the case for others for others.

There are still many people on two-year diagnostic waiting lists with little or no access to community support, particularly community mental health. Unfortunately, diagnosis is often the only route to support.

Diagnosis can be a ‘yes’ or ‘no’ decision backed by some written resources, a follow up appointment and the option of a referral for a Care Act assessment. For those that have already developed their own positive coping strategies, that is all they need.

But many cannot access specialist assessment and support for communication, organisation or sensory difficulties - nor automatic screening for co-occurring conditions such as ADHD or blood pressure, where there is evidence of higher incidences in autistic people.

There is under-diagnosis in older people and girls and women, the process of transition from children’s services to adult services is often likened by autistic people and families to falling over a cliff and, while there are some good examples across the country, day-to-day preventative support is largely lacking in many areas.

No wonder then that the Transforming Care initiative, whilst successfully moving some people from hospital into community settings, struggles to reduce the overall number of people being admitted to assessment and treatment units, where knowledge of autism can be limited.

What needs to change

We need an update of the Autism Act guidance to take us forward, a full and meaningful pathway with access to timely assessment and community based support that is appropriate to each individual. Guidance that states ‘thou must’ rather than ‘thou should’. And it needs to be inclusive of under-18s, not just adults.

So I have high hopes for the forthcoming national review which will be published on the 10th anniversary of the Autism Act in November 2019. But an Act guarantees nothing if there aren’t the resources to implement it locally, the guidance to support commissioners, nor any sanctions should they choose not to follow it.

Trevor Wright

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