Autistica

Autistica, is a UK charity devoted to raising and investing funds into biomedical research and peer-reviewed studies on autism, based in London. Autistica’s stated goals include determining the causes and biological bases of autism spectrum disorders, improving diagnoses of autism, and advancing and evaluating new treatments and interventions, with an eye towards improving quality of life for people affected by autism.^[1]

Autistica was founded as 'Autism Speaks in the UK',^[2] a UK partner of Autism Speaks, in 2004 by entrepreneur and philanthropist Dame Stephanie Shirley.^[3] The link with the US parent was severed from 1 January 2010.^[4] Autistica is registered in and operates throughout England and Wales.^[5]

The mission and goals of Autistica are distinct from those of the UK-based National Autistic Society (NAS). While Autistica concentrates its efforts on research into the causes and treatments of autism, with a view to reduce the age of diagnosis, provide effective, evidence-based treatments for people with ASD, particularly co-occurring problems, including epilepsy, attention deficit and hyperactivity disorder (ADHD), and severe maladaptive behaviours (SMB), and researching autism and ageing, the NAS focuses on the service needs of autistic individuals.^[6]

About Autistica

Autistica funds pioneering medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions. They are the UK’s leading autism medical research charity, and they are committed to funding translatable research that will make a difference to people’s lives. They work closely with the autism community to address those issues that cause the greatest concern to those living with autism day by day. They also work with many of the UK’s finest clinical research establishments to ensure that their investment in research is targeted to deliver the best outcomes. Their aim is to move the research from bench to bedside so that new discoveries can translate as quickly as possible into a better experience for all those affected by the condition.

Their current scientific priorities are to: Bring down the average age of diagnosis and develop early interventions that can improve the outlook for individuals with autism. Improve the quality of life for young people and adults with autism by understanding the additional physical and mental health issues that many individuals experience and ensure the development of effective treatments. Support adults with autism through improving our understanding of how autism changes over the lifespan and making sure that adult specific needs are addressed.

Vision

Their Vision is for a world of advanced scientific understanding of autism where evidence-based interventions and treatments are readily available, diagnosis is early and straightforward, and causes are properly understood.

Their Mission

To fund and stimulate innovative translatable research that will lead to better understanding of the causes of autism, improved diagnosis and the development of effective treatments. To be the bridge between people with autism and researchers: providing a voice and ensuring that the urgency is recognised and research is relevant to the needs of families. To ensure that autism research becomes important to the general public and policy-makers. To become the key, accurate source of information for anyone interested in the science of autism and all autism research: providing understanding, hope and a vision for a better future.

Activities

Autistica considers autism the most serious challenge facing medical science today. The organisation notes that the condition imposes a large financial burden on individuals afflicted by it, their families, and society as a whole. The effects of autism have the potential to be extreme and lifelong, and they are estimated to cost nearly £34 billion a year in the UK alone. Furthermore, as there remains a humbling lack of knowledge about the specific causes of autism, Autistica is concerned with continuing to fund studies into the factors behind the condition.^[7]

Autistica's research

Autistica is the UK’s largest charitable funder of autism research. Founded in 2004, they have raised and invested over £4 million in pioneering research to understand the causes of autism, improve diagnosis and explore new interventions.

Understanding Causes By funding research into the causes of autism they can help answer the question that parents often ask, which is why does my son or daughter have autism? Scientists look at how genetic and environmental factors may affect brain development and in turn behaviour. Piecing this information together gives an avenue of knowledge to develop new interventions.

Improving Diagnosis

Both parents of children with autism and adults on the autism spectrum continue to wait for long periods between when they first have concerns that something may not be quite right and when they eventually receive a final diagnosis. This period of waiting often leads to worry, doubt and frustration, and may mean key opportunities for intervention are missed. With more research they can help improve practitioner knowledge and reduce the average age of diagnosis.

Once a diagnosis is received there are few interventions on offer and little research evidence that tells families what will have the greatest beneficial effect. Early intervention is key to providing children with the best outcomes, but support also needs to be provided across the lifetime and targeted at specific points in development. There remains a lack of knowledge about the co-occurring difficulties that go along with autism (e.g. mental health problems; sensory sensitivity) and these are often the problems that families have greatest concerns about and require interventions for.

Autistica realise the importance of supporting projects that provide an infrastructure to conduct autism research in the UK. These projects focus on providing data resources that are open to the research community, or help families access information on research projects, or that may encourage the next generation of scientists into autism research.

Autistica has always funded excellence in research and basic science. In 2012 the charity began consulting with families about what they see as future priorities for autism research. In listening to this consultation they prioritised three areas of research in the coming years:

To continue funding excellence in researching early diagnosis and early intervention To fund research that looks at autism across the adult lifespan and into old age To develop interventions for those co-occurring difficulties that go along with autism (e.g. mental health problems) but often remain undiagnosed and untreated.

They heard from families that they want medical research to be making a difference to their lives now and so theirfuture research funding will focus heavily on translational research to take the important discoveries in basic science through to having a beneficial impact for families.

Funding Policy

Autistica uses a peer review process to make sure that the science they fund is of the highest quality. They are members of the Association of Medical Research Charities (AMRC) which reflects the rigour of their funding process. Final funding decisions are made with the guidance of Autistica’s Scientific Review Panel made up of top UK and international researchers.

Fundraising

In 2009, Autistica provided a total of £940,000 to its beneficiaries in autism research.^[5]

Notable members and participants

• Professor Sir Michael Rutter
• Stephanie Shirley
• Michael Fitzpatrick
• David Morgan
• Bridget Ogilvie
• Gordon Smillie^[8]
• Edward Chandler
• Peter Johns
• James Lowe
• Fred Cohen
• David Reeves
• Jude Ragan OBE

References

External links

• Autistica web site