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Beating Stress in Autism: Survey Results

Key results:

  • 99% of parents/carers 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
  • 81% of people on the autism spectrum say that stress has a high or very high effect on their self-esteem and confidence
  • 74% of people on the autism spectrum say that stress has a high or very high effect on their sleep
  • 95% of parents/carers say that stress has a high or very high effect on their children’s education or work
  • 88% of parents/carers say that stress has a high or very high effect on their children’s behaviour
  • 86% of people on the autism spectrum say that stress has a high or very high effect on their mental health
  • 84% of parents/carers say that stress has a high or very high effect on their children’s relationships
  • 93% of parents/carers say that it is difficult or impossible to find effective support in dealing with their stress
  • 63% of people on the autism spectrum say that their current strategies for dealing with stress are not effective

Key findings:

  • Common themes for autistic individuals and their carers include poor health, inability to keep a full-time job, additional strain on the family, and lack of adequate support.
  • With better identification, understanding, and support – stress would be significantly reduced for people on the autism spectrum and their families.

Key quotes:

On the impact of stress:

  • "I feel so stressed most of the day. I feel like it's my constant companion." Anonymous, autistic adult
  •  “I'm not good at recognising I'm stressed so it builds up and suddenly I can't function at all.” Geraldine, autistic adult and mother to autistic son
  • "Stress is crippling most everyday." Maggie, autistic adult and parent to four children, two of whom on the spectrum
  • "Stress and anxiety are the most debilitating element of my Autism." Anonymous, 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

On health:

  • "Stress has a devastating effect on my mental health." Patrick, autistic adult
  • “Stress can make me feel near suicidal. Exhausted. Inadequate.” Karen, autistic adult
  • “My son can be aggressive and violent...  I take a drug to stop the panic attacks which come from my son's behaviour.” Joy, mother to son with Asperger syndrome
  • "Panic attacks are more frequent. I've developed a stammer, which I've never had in my life and my mood is generally low with a poor tolerance level... I'm now a burnt out Aspie, with chronic Fibromyalgia and other significant health issues." Maggie, autistic adult and parent to four children, two of whom on the spectrum

On self esteem and confidence:

  • “Stress has robbed me of all my self-confidence.”  Karen, autistic adult
  • "Stress has a crippling effect on my self-esteem." Patrick, autistic adult
  • “I always feel panicked. I've completely lost my confidence at work and I'm a university lecturer so I have to look confident in front of large numbers and students and my high achieving competitive colleagues... I work part time 3 days a week but I have to put on a facade at work. I have to be seen to be coping." Anonymous, mother of autistic son

On work:

  • “For the first ten years of my career I was as stressed on my way to work on each day as I was on my first day.” Richard, (works in forensics), autistic adult and parent to autistic son
  • “My son was in an unsuitable work placement and was so stressed by an event at work that he vomited every day for a week without being able to express why he was ill.” Veronica, parent of autistic son

On relationships:

  • “Stress has unfortunately contributed to our family breakup." Anonymous, mother of autistic son
  • “Because I find socialising so stressful and unrewarding I avoid it as much as possible. As a result I now have no one I could call a friend.” Richard, autistic adult and parent to autistic son
  • “Most of the time you just have to ignore your own stress/self.” Tracey, whose daughter and husband are on the autism spectrum

On sleep:

  • “Problems either keep me awake or interrupt my sleep. My son goes days without sleep sometimes.” Joy, mother to son with Asperger syndrome
  • "Sleep is a huge issue for me. I average three hours a night if I'm lucky." Maggie, autistic adult and parent to four children, two of whom on the spectrum

On external factors - seeking support:

  • "The worst thing was dealing with people - professionals with absolutely no idea about autism and the affects it has on a family unit." Joanna, parent of autistic daughter
  • "The lack of support has been a contributing factor. If I'd had effective support for my boys from the beginning, stress would have been significantly reduced and I don't believe I'd be where I am today. Barely able to cope." Maggie, autistic adult and parent of four children, two of whom are also autistic    
  • "Carer support is non-existent." Anonymous, parent
  • "The services available to children are shameful in that they are not fit for purpose... The stresses faced by son are too numerous. The frustrations at the lack of support and appropriate education for him are ongoing.” Emily, mother to son with Asperger syndrome
  • "In the past my son went through a violent spell. But much of that underlying stress was caused by lack of support in the community, inappropriate drugging, and lack of training and experience of the condition.” Janette, mother of son with Asperger syndrome
  • "My son's Autism is not a problem for him or us, it is other people's disability in understanding his needs and failure to accept our expert knowledge that causes the problems." Alyssa, mother of autistic son
  • Having to act normal only adds to stress. Patrick, autistic adult

Survey background:

Research Autism surveyed 360 families affected by autism in May 2016.

  • A third of respondents were individuals on the autism spectrum, including Asperger syndrome.
  • Over half respondents were parents/carers of children on the autism spectrum.
  • Some professionals also completed the survey from the perspective of their clients.
  • [NB some respondents were both autistic adults and parents/carers of autistic children

Related Pages

Quick link:
http://www.researchautism.net/beating-stress-autism-survey-results
Updated
25 Oct 2017