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Helping families choose autism treatments and therapies

Date: 2 April 2015

To coincide with World Autism Day on 2nd April 2015, Research Autism reveals a new survey* which asked autistic families across the UK - what happens after diagnosis? It also launches the first unbiased guide to treatments and therapies to help parents navigate the overwhelming choices to be made once a child has been diagnosed with autism.

  • 83% parents felt lost or confused about where to turn to for help with regard to their child's treatment 
  • 69% say they didn't know where to go for information having gained a diagnosis for their child with autism 
  • 74% found it difficult or impossible to find trustworthy information

Meeting the need for a better source of information, Research Autism today launches the first unbiased guide to treatments and therapies for individuals on the autistic spectrum:  'Choosing Autism Interventions:  A Research-Based Guide'. 

Estimates suggest that almost 700,000 people in the UK have autism (Research Autism), equating to one person in every 100.  Since the 1990s, the number of people diagnosed with the condition has risen significantly.

The challenge for both adults and the parents of children on the autistic spectrum is getting to grips with the diagnosis as well as understanding the bewildering array of advice and types of treatment and therapies.

Treatment and support includes thousands of different interventions, including applied behaviour analysis (ABA), drama therapy, the gluten-free diet, Lego therapy, sensory integration training, swimming with dolphins, and vitamin supplements. Unfortunately, some treatments and therapies are also expensive, time consuming and potentially harmful.

In this new book written for parents and carers of children and adults on the autism spectrum, the authors provide an overview of the most commonly used interventions and therapies and guide readers through some simple steps to taking control and how to self-evaluate interventions.

Key take-aways include:

  • What autism is and common issues facing people on the autism spectrum
  • What research says about the treatments available
  • Interventions which should be avoided as scientifically unfeasible and potentially harmful
  • Best practice guidance from the National Institute of Health and Care Excellence (NICE)
  • Tools to help parents such as questions to ask
  • Advice directly from people with autism and parents

This is currently the only book on autism treatments and therapies that meets the requirements of the NHS Information Standard, which means that the information is clear, accurate, balanced, evidence-based and up-to-date.

Jane Asher, Patron of Research Autism writes the foreword for the book and says: "There are many unsubstantiated 'treatments' - even 'cures' - that are suggested for autism. Few of these therapies are supported by any clinical research, but you can easily see how a desperate parent might leap at the idea of some 'miracle cure' - something that sadly happens only too often. Some of these interventions are positively harmful, others are at best ineffective and many are extremely expensive."

Alex, parent of six-year-old Shaun said: "After our son was diagnosed with Autism we would literally try everything we could lay our hands on that promised to help. We followed up leads from
the internet and popular press and it seemed that many of the professionals were as much in the dark as we were. We now know that many of the things on offer were a waste of time; some little more than snake oil treatments. There is a desperate need for parents to know where to turn for impartial advice."

Deepa Chief, Executive, Research Autism said: "As knowledge and awareness of autism grows, so does the need for access to the best available evidence-based information about how people with autism and their families can be supported. The diverse range of treatments and approaches on offer need thorough and careful consideration. I therefore warmly welcome the publication of this new book on choosing the right autism interventions, which aims to cut through the voluminous and sometimes baffling array of information that exists 'out there' about autism treatments, therapies and approaches."

ENDS

*The Research Autism Survey was carried out amongst 500 families with a child on the autism spectrum.

Notes to editors:

Choosing Autism Interventions: A Research-Based Guide for parents and careers is available from Pavilion, priced £19.95.

- ENDS -

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Notes to editors:

Contacts

Bernard Fleming, Information Manager, Tel. 020 3490 3091, email info@researchautism.net

Research Autism

www.researchautism.net

Research Autism is the only UK charity dedicated to the production of quality, trusted information on autism treatments and other approaches. Its Information Centre is informed by world experts and accredited by the NHS Information Standard, an independent kite-mark of reliability and quality. It guides people through the minefield of interventions on offer, allowing them to make informed decisions based on impartial, factual information, including risks and hazards. Its research programme is derived from the priorities of autistic people and families and addresses areas that affect everyday life. 

Dimensions

Dimensions is a specialist not-for-profit provider of support for people with autism and people with learning disabilities. It supports around 3,500 people across England and Wales. For more information visit www.dimensions-uk.org or contact Duncan Bell, PR Manager 0300 303 9062.

About the authors:

Bernard Fleming

Bernard Fleming is the Information Manager at Research Autism, the only UK charity exclusively dedicated to research into interventions in autism. He has worked as an information manager for a number of other charities including the Royal National Institute for Blind People, the Mental Health Foundation and the Foundation for People with Learning Disabilities. He also served on the editorial board of NHS Choices for five years. He currently runs the Research Autism information service, the only autism information service accredited to the NHS Information Standard.

Elisabeth Hurley

Dr Elisabeth Hurley PhD, Bsc, is the Research Officer at Autism West Midlands, the leading charity in the West Midlands for people on the autism spectrum. She has a PhD in Neuroscience, specialising in the development of the body clock. Since joining Autism West Midlands, she has co-authored The Good and Bad Science of Autism (2013) with Dr Neil Walsh and edited the book Ultraviolet Voices: Stories of women on the autism spectrum (2014). She provides training on a number of topics including women and girls with autism and putting theory into practice. She is also the co-editor of the Good Autism Practice Journal.

The Goth

Diagnosed 13 years ago with high-functioning autism, the
 Goth has been working as a trainer and advocate in the autism field since then. He also produces and edits Asperger United magazine, a free, independent publication funded by the National Autistic Society. His background is farming, physics, linguistics and psychology, and he is also a qualified cabinet-maker. He has advised on two television series that featured autists, co-written Asperger's Syndrome for Dummies (2010), and also uses his hearing to advise people how to get the best sound from hi-fi.

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Quick link:
http://www.researchautism.net/helping-families-choose
Updated
25 Oct 2017