Name: Joe Powell
Background info: Aged 39, diagnosed with Asperger syndrome at 20. Joe lived in autism care institutions for eleven years during which time he was non-verbal as a way of coping with the extreme stress he felt. Now National Director of All Wales People First, a self-advocacy/human rights based National Umbrella organisation, which represents the political views of the members of People First groups across Wales, all of whom have learning disabilities and/or autism spectrum conditions.
Joe feels stress has impacted on all aspects of his life. Whilst his story is now one of success, he believes stress has held him back, hindered his ability to move on and has had a direct impact on forming relationships.
When stressed, Joe says he sometimes feels like he is unable to function. He worries obsessively, is nervous, shakes and feels angry. He says that autistic people often need to repeatedly replay a situation in their mind to be able to process it and stress often makes them feel in danger when really they are safe.
Joe uses flexi time to allow him to take 'time out' of work when he feels stress is beginning to build up, but appreciates this is a "luxury" and not available to many. He finds himself functioning on "auto pilot". Other strategies include escapism via gaming and writing stories, comfort eating, exercise and avoiding caffeine (which "fires up my nervous system"). Life coaching has helped him see his journey and achievements positively.
Regarding service provision, Joe is passionate that preventative services are required rather than waiting for people to hit a crisis point. He also wants all services that are for autistic people, and come into contact with them, to understand factors that cause stress and work to alleviate them, in turn, helping to prevent challenging behaviours.
On adequate support: "It's easier to support (and equip) kids than fix broken adults. Children with autism should learn strategies to manage stress early - a toolkit of strategies, ready for when they need them - and to understand that a lot of things you feel aren't really as negative as you perceive them to be.”
On the physical impact of stress: "I get a sense of nerves in my hands and feet and then it feels like the stress hormones are coming up from the adrenal glands, the pancreas and squirting out through my body, like my nervous system is hitting out. I get a real sense of heightened awareness - it feels like slow motion - hypersensitive to detail and hyper-vigilant - sharp but not comfortable."
Name: Maggie Sullivan
Background info: Age 50, diagnosed with Asperger syndrome at 47. Maggie has four children aged 22, 19, 18, 16, two of whom are autistic.
Maggie was frequently unwell due to stress in the workplace, and would have to take a lot of time off work. She often needed to collect her sons from school early, due to their own stress. She believes a lot of stress comes from having to fit into the neurotypical world of work eg 9 – 5, Monday to Friday. She is now self-employed in order to adequately care for her sons and gain a better work/life balance. Maggie runs an autism retreat in Sussex where she lives.
On the impact of stress: “The struggle with Stress has become worse the older I've become... Stress is crippling most everyday. A huge chunk of my life is now unmanageable and I'm having to ask for help.”
On sleep: “Sleep is a huge issue for me. I average 3 hours a night if I'm lucky.”
On being a parent/carer: “All my concentration goes on work and the care of my 2 Aspie sons, this has left me spent and unable to care for the home. The stress levels have increased as a result of the chaos... My husband’s nervous breakdown tipped the scales for me. I was already at capacity before he got sick, having 2 on the spectrum and caring for him as well as trying to keep myself on track was just too much... 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.”
On external support: “The lack of support has been a contributing factor.. I need help developing a strategy!.. I've lived my entire life with no SS or Autism support for either myself or my children, I'm now a burnt out Aspie, with chronic Fibromyalgia and other significant health issues. For the first time in my life I'm now having to claim PIP and have outside intervention to help me manage daily activities and care. 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.”
Name: Joanna Van Rooyen
Background info: Mother of 4.5yr old daughter, diagnosed last Christmas. Joanna worked at Amazon for eight years, became part-time after having her daughter and was made redundant in November just receiving before daughter’s diagnosis. Joanna now feels unable to work whilst caring for her daughter.
On the impact of stress: “I am in a state of hypervigilance all the time as my daughter doesn't understand danger, runs off at moments when she is stressed and cannot be reasoned with in the same way other children can which makes everyday life more difficult and those who don't know or understand asc to be not very sympathetic... I was so stressed after my daughters diagnosis (2 days before Christmas) that I was crying all the time for no reason, and I felt completely overwhelmed with paperwork and isolated within my friends/family. My other child started behaving badly at school and my husband went into emotional shut down, refused to talk about anything and took up smoking again and at the bottom of our garden. It felt like our life was spinning out of control and whenever I asked for help, none came. The worst thing was dealing with people/professionals with absolutely no idea about autism and the affects it has on a family unit.”
On self-esteem and confidence/external factors: “I feel like a bad mother as I can't control my child in the traditional ways and get funny looks in public places if we cannot cope.”
On sleep: “I sleep ok as I'm so tired but often wake up with my mind "racing" at 3am.”
On employment: “I'm not currently working as have felt unable to look for a job as my daughter is a full time job. I would like to go back to work at some point in future.”
On behaviour/health: “Stress makes me irrational, emotional, less able to cope at times and leads to feelings of isolation and panic.”
On external support: “Finding other parents in the same situation is key although that's not always easy... I am very supported by some members of my daughters team - her nursery and their staff but not supported well at all by others - health visitor has been rubbish, specialist health visitor non-existent, LEA refusing to help due to money issues. Constant fighting with professionals for any help and being put on waiting lists adds to the problem."