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Research Autism to address the toxic effects of stress for autistic people and their families

Date: 19 May 2016

Stress is the single biggest factor affecting quality of life for autistic people and their families, causing significant impact across all key aspects of life including school, work, health and mental health, relationships and behaviour.

In a new survey, Research Autism found that 98% of those with autism and their carers said stress is a significant issue for them, with 89% adding it is difficult or impossible to find effective support in dealing with stress.

“Stress can make me feel near suicidal. Exhausted. Inadequate.”

"I feel so stressed most of the day. I feel like it's my constant companion." Autistic adult.

Research Autism launches a campaign today to address the issue of stress in autism.  Autistic people and their families say stress is the biggest single factor affecting their quality of life, wellbeing, relationships and opportunities. Stress in autism is much more common, severe and disabling than in the general population and often has long-term and often devastating consequences.

Despite wide recognition that autistic people are particularly susceptible to adverse consequences of stress there simply isn’t enough quality research into the nature of stress in autism and how to properly help and support those people affected.

“Our survey confirms that stress has a massive effect on health, especially mental health, relationships, education and work.  Parents told us stress has led to family breakdown; autistic people told us it rules pretty much every aspect of their lives;” says Richard Mills, Director of Research at Research Autism.

“It is very well known that stress is a big factor in autism and yet little investment has been made in research into understanding and responding to it. In fact some of the ways autistic children and adults are treated seems to make matters worse. Current research has also done little to reduce the significant stress found amongst families and carers of autistic people. This must change. We must act now.”

Research Autism is organising an international Stress Summit in September, to listen to autistic people, their families, professionals, and leading scientists and researchers. We need to better understand the issues, explore the knowledge gaps and identify the research priorities. We will then commission critical research that builds on any promising approaches.

"This campaign, leading to better outcomes through research, is desperately needed and I would plead with funding bodies, government departments and individuals to back it financially and donate whatever they can to help. I reacted to the extreme stress in my own care environment by becoming non-verbal as a way to cope, so I am passionate about seeing effective strategies to reduce stress and support families in place" describes Joe Powell, National Director of All Wales People First and autistic adult. "I call on the Government to support this campaign and ensure its findings are acted upon."


Quotes

Read just a few quotes from our survey showing the impact stress has on lives:

“Stress can make me feel near suicidal. Exhausted. Inadequate... I had debilitating daily anxiety attacks that lasted most of the day. Like the sense of terror you experience on waking from a nightmare, but which doesn't go away. It was exhausting and very, very upsetting.” Karen, autistic adult.

"Stress makes me irrational, emotional, less able to cope at times and leads to feelings of isolation and panic." Joanna, parent of autistic daughter.

"I tried suicide several times due to stress." Anonymous, autistic adult.  

"The struggle with Stress has become worse the older I've become... Stress is crippling almost every day.  A huge chunk of my life is now unmanageable and I'm having to ask for help." Maggie, autistic adult and parent to four children, two of whom are on the spectrum.

“Every time there is a change at work, I've had years of high stress. I'd say it took me over 4 years to become more comfortable in my 1st work location and 3 years in my second. However, I still get stressed going to work every day and for the 1st 10 years of my career I was as stressed on my way to work each day as I was on my 1st day.” Richard, (works in forensics), autistic adult and parent to autistic son.

"I am badly affected by night terrors and continuous thought loops when stressed." Anonymous, autistic adult

"Stress has a devastating effect on my mental health." Patrick, autistic adult.

"My relationship has suffered from the stress of living with autism. I have little time or energy for anything other than caring for my son. My social life over the years has become virtually non-existent." Anonymous, parent of autistic son.

“Stress has robbed me of all my self-confidence.”  Karen, autistic adult.

 “We can't always foresee what is going to cause stress in our son. When able, we do what we can to avoid trigger situations. This makes life very restricting.” Janette, parent of son with Asperger syndrome.

- ENDS -

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Notes to Editors:

For supporting material or to speak to a spokesperson or case study please contact Anoushka on 020 3490 3091, anoushka.pattenden@researchautism.net

  • Stress in Autism, background information
  • Survey Factsheet, with additional statistics and quotes
  • Infographics

The term autism is used to describe a range of neurological conditions affecting the development of usual forms of social behaviour and communication. Autistic children and adults may have additional intellectual difficulties but the majority will be of average or above average intellectual ability. Some will have superior abilities particularly in science or the arts. The majority of people affected report difficulties in sensory processing and in making sense of day to day interactions with others often causing them to be isolated, bullied and anxious. In an unacceptably high number their difficulties will go unrecognised or be misunderstood. With support and understanding and the right help people can go on to fulfil their potential or go on to lead happier and more fulfilled lives. Sadly at present, many do not and they and their families experience stressful, uncertain and difficult lives.

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. 

www.justgiving.com/researchautism

Survey Results

Survey results at a glance – see full survey results for more information

  • 98% say stress is a significant issue for them
  • 98% of parents/carers say it is difficult or impossible to find effective support for their children
  • 86% of people on the autism spectrum say that stress has a significant effect on their mental health
  • 81% of people on the autism spectrum say that stress has a significant effect on their self-esteem and confidence
  • 95% of parents/carers say that stress has a significant effect on their children’s education or work
  • 71% say stress has a high or very high effect on relationships
  • 74% of people on the autism spectrum say that stress has a significant effect on their sleep
  • 88% of parents/carers say that stress has a significant effect on their children’s behaviour

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Updated
09 Jan 2017