Headshot of woman smiling in spectrum logo alongside a quote

 

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, Zandrea Stewart previews a panel discussion on the Autism Act that she will be taking part in at our 10th Anniversary Autism Professionals Conference on 7 March.

Thank you for inviting me to share my thoughts as we mark the 10th Anniversary of the Autism Act. I feel incredibly privileged to have been a part of a journey that has moved from a lack of recognition and understanding of autism by the majority of society to a place where autism is recognised by most, if not always understood.

My autism journey

Autism has featured throughout my 25-year career working in social care and health. During this time my practice has centred around my values and intention to create (in any small way) greater equality, respect and inclusion of people who are excluded, misunderstood and often discriminated against in society.

As an unqualified autism outreach worker in the late 1990s, I realised when working with a woman who I will name Sarah, that not everyone had the same insight, belief and aspirations for autistic people as I had. I was equally frustrated and fascinated that people responded to her diagnosis and behaviours but had little recognition of who she was as a person or how her autism impacted on her life. I got to know what made her happy, her anxieties and, most importantly, her strengths. As a result, Sarah’s world opened up with new experiences and skills, with the ‘challenges’ seen by others significantly reduced. I can honestly say that Sarah has influenced my career and how I have worked ever since.

I continued to include autism in my work as I qualified as a social worker and as a manager for integrated mental health services, where I worked with Professor Terry Brugha in the early 2000s. With the NHS Mental Health and Learning Disability provider and social care departments, we undertook a study of people diagnosed or suspected to be on the autism spectrum accessing mental health, learning disability and children’s services. We then went on to develop one of the first integrated autism diagnostic pathways, a multi-agency (including the voluntary sector and carer) autism training programme and an Autism Partnership board in the early 2000s that was recognised by the National Autistic Society in a good practice guide at the time.

At the time very few people recognised autism, saying ‘what’s that?’ or ‘we don’t work with autism’. We understood that by recognising an individual’s autism it could improve their individual outcomes and effective services. Something that I still believe, to this day.

The Autism Act

Around 2008 I was the Autism Lead for the Association of Directors of Adult Social Services (ADASS), working with the Department of Health, the National Autistic Society, autistic people and their families and other key partners – talking about how we can influence equity for autistic people through the development of the Autism Act 2009, the autism strategies and the statutory guidance.

Over the past 10 years of the Autism Act, we have seen awareness of autism grow and the responsibilities of social care and health and other national departments highlighted in Think Autism and the statutory guidance, demonstrating that autism needs to be recognised across all services and the wider community in order for autistic people to have a fulfilling and rewarding life. The implementation of the autism strategy has been monitored through the National Autism Self-Assessment and has demonstrated variable delivery across the country. There are some positive examples of progress and practice: we have seen practitioners trained, the championing of autism locally, the development of diagnosis pathways and local autism partnerships formed that were not previously in place. However, while this is all part of the important journey to build a society that is autism aware, we are not there yet and there is still much work to be done to enable autistic people to have equitable lives.

It is my hope that the NHS England Long Term Plan will tackle the significant health inequalities that autistic children and adults face. Further, that individuals do not have to wait too long to get a diagnosis.

The inclusion of children in the autism strategy when it is refreshed this year will provide greater opportunities in preparing for adulthood through education and life skills in planning for their adult life and make sure that parents and siblings will get the support they need as early as possible to prevent situations at home breaking down.

What needs to change

Through additional awareness and guidance I would expect to see society accept autistic people, of all ages, as equal members of their community - accepted for who they are as individuals and not defined by a diagnosis.

I would like to see the development of inclusive community support and commissioning of community services that are responsive and understand autism. Providing the right support at the right time, with the reasonable adjustments in place that prevent needs from escalating and impacting on individuals’ wellbeing, so that autistic people can live full independent lives at any age in their communities.

I believe to make sustainable change happen we all have a responsibility to work together to make what was intended by Autism Act, Think Autism and the forthcoming autism strategy refresh a reality.

Over the next 10 years I would like see a sizeable shift and hear from autistic people, their families, the wider community and services that they have been witness and experienced a significant positive change across society in how autistic people and others with hidden conditions are able to live their lives as equal citizens.

I for one will continue to do what I can to make this a reality.

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 our survey