04 Sep Jon Spiers – Our changing understanding of autism
My charity, Autistica, is unique within the Autism Alliance and among national autism charities because we purely focus on research. Much still remains poorly understood about autism and autistic people’s experiences, needs and desires.
Through high quality research, we can improve diagnosis, build better services and tackle the many inequalities faced by autistic people and their families. The Autism Alliance has been an immensely useful conduit for us to communicate the latest research findings to frontline service organisations, helping them think about what works and what can be improved. I’m proud to now sit on the Executive and lead the Policy Group to deepen that connection between services and research.
One particularly important and fascinating area where research is making a difference is our conception of autism. Decades ago, very few people received an autism diagnosis but today we know that one in 100 people are on the spectrum.
Historically, the focus was on young boys but now services are responding to demand from increasing numbers of girls as well as adults of all ages.
Data on co-occurring conditions is showing us that very few people are ‘only’ autistic – virtually all autistic people also have a range of neurological differences like dyspraxia, ADHD and epilepsy, as well as increased likelihood of physical and mental health problems. And because our health and care systems and research have not yet developed pathways and interventions to comprehensively support this enormous diversity in abilities, challenges and health problems, autistic people face poor outcomes in many areas of their lives, including education, criminal justice, health, employment and, most tragically, premature death.
The most up to date thinking
That’s why in October we will hold the first Autism Alliance Research Conference, offering Alliance Chairs, CEOs and senior managers an opportunity to receive the most up to date thinking and evidence from academics and an autistic advocate.
The conference, taking place in London on October 19th 2018, aims to explore the implications of research into neuro-developmental conditions (NDCs) including autism. While it has been known for some time that the majority of people with neurodevelopmental conditions (e.g. intellectual disability, autism, epilepsy, Tourette syndrome, ADHD, dyslexia, dyspraxia, OCD) have more than one condition, research in recent years has begun to more accurately quantify the overlaps and understand the shared underlying causes and common consequences of these co-morbidities.
The conference will offer charities supporting autistic people the opportunity to hear about the latest science, discuss the ramifications of this evolving knowledge base for policy and practice, and share good practice.
Chief Executive, Autistica
Trustee and Policy Lead, Autism Alliance UK