From "Questioning Answers"
Views on autism research and other musings.
By Paul Whitely
October 10, 2013
Raising children is an extremely rewarding experience. That's not to say however that every minute of every day is spent with smiles and adoration of your offspring and their various endeavours: "Was that family heirloom that I just dropped on the floor really, really important Daddy?" Generally speaking the majority of parents I imagine though, would look favourably at the experience of going the family-way.
The rosy picture of having a family is however never truly complete without realising that having children can be quite a stressful experience. Whether as a result of those earliest days of sleep deprivation and almost constant nappy changing duties, through to some of the growing pains as puberty beckons and even onwards into the adult years, stress is a pretty constant companion to the family journey. And the amount of stress parents face in the child rearing odyssey is very much influenced by lots of other external variables such as money, job, relationships et al. Oh and also how many kids you're parenting (see here).
To have a child with additional needs, whether a physical disability or intellectual / developmental disorder, has been suggested to carry it's own unique challenges which can also impact on parental stress levels. I'm not saying that to somehow blame or stigmatise or anything like that, but merely to reflect the quite extensive body of research which has concentrated on that point (see here for example).
There is also quite a large evidence base to suggest that parents report greater levels of stress associated with raising a child with an autism spectrum disorder as per the example article by Koegel and colleagues*. Indeed it is with this area in mind that I stumbled across the paper by Dykens & Lambert** who noted: "Stress-reducing interventions are needed for parents of children with autism" as part of their analysis of cortisol levels in mums raising children, including those raising children with autism.
I've talked about stress and cortisol before on this blog (see here) as per the collected findings in relation to people with autism. The net result of that post was to say that yes, quite a few people on the autism spectrum present with an unusual stress profile (although not necessarily beyond the range seen in not-autism) but importantly, stress - as monitored via cortisol levels - seems to be a rather more continual process for many. Such results have obvious implications in relation to things like the anxiety issues often reported to follow autism.
The highlighted sentence from the Dykens paper on the need for stress reduction interventions for caregivers pinpoints a fairly obvious issue which I'm sure many people would take as read. Indeed with the suggestion from Osborne and colleagues*** that parenting stress might also potentially impact on the effectiveness of early intervention for autism, the questions are: what kinds of stress-reducing interventions are available and importantly, which ones work?
I don't claim to have some special insight into these questions, but a quick trawl of the research literature offers a few potentially important pointers.
(i) Social support. "With a little help from my friends" was a song by the Beatles but also the title of a rather interesting paper by Brian Lovell and colleagues**** on one potential route for tackling caregiver stress. Appreciating that to many this is not new news, it is perhaps little surprise that through the wonders of social media and the Internet, on-line social support groups for parents of children with autism are numerous and easily accessible in our digital age. With all the talk about how such resources might be 'changing our brains' (erm, or not), I'm minded to say that in this example, it might actually be a change for the better.
(ii) Mindfulness. I know, I know. It sounds like psycho-babble mumbo-jumbo to the nth degree when you first hear it. But actually I'm becoming a bit of a fan of mindfulness as per my previous post making mention of the BBC Horizon program 'The Truth About Personality' featuring the ever-intrepid Dr Michael Mosley. The basic idea is to think about the present, nay focus on the present, and manage the thoughts and feelings that are linked to stress. The evidence base for mindfulness for relieving caregiver stress is what might be described as emerging as per the study by Neece***** although with some potential bonuses for offspring too.
It's also worth pointing out that mindfulness techniques are seemingly also finding a role in helping some people on the autism spectrum too (see Spek and colleagues******). Relations to mindfulness such as the use of relaxation techniques for caregivers have also been put forward as potentially useful*******. I wonder if something like blogging might also come under the description of 'managing thoughts and feelings'?
(iii) Parent training. I must point out that I am in no way trying to say that anyone is in need of "training" just in case anyone thinks I'm harking back to the bad old 'Bettelheim' days or casting aspersions about parenting style. I merely refer to the body of literature which 'suggests'******** that there may be some merit in looking into this option with stress relief in mind. Whether parent training might also fit under the banner of other programs such as RDI or more generic programs like Stepping Stones Triple P and any knock on effects this might have to parent stress levels is something perhaps requiring a little bit more study in order to define things like potential best responder characteristics.
(iv) Respite. I don't think this option really needs much explanation. Harper and colleagues********* said it best: "More respite care was associated with increased uplifts and reduced stress". Indeed, part of that reduction in stress was seemingly getting a little more quality time with your spouse or significant other... break out the Marvin Gaye. Seriously though, I can't stress enough how important respite care can be to some families. And if you happen to live here in Blighty (that's the UK), there are quite a few resources about respite and how to access the care: see here and here.
(v) A hobby or external interest. Although this is supposed to be an evidence-based post, there are a few other stress-relieving options that have been mentioned in a more anecdotal fashion. An interest involving physical exercise as a stress reducer seems to be a common theme. Indeed as I write this post, I'm just watching the preparations for the Great North Run on this slightly soggy Sunday morning and one parent of a child with Asperger syndrome running for the charity Ambitious About Autism. Using her running preparations as a way of getting some down time was mentioned in her interview.
Other parents have talked about the use of activities like martial arts as being a stress reducing tool, which did make think back to some other work on the use of martial arts as a self-esteem builder for children with autism (see here). I'm not necessarily saying that every parent has to immediately join their local Jui-jitsu class or anything like that, but one can perhaps see how the process of physical activity might serve more than just a physical purpose.
I've only really scratched the surface with this post on parental stress and autism and how one might go about tackling / reducing it. If you want a perspective from a parent with autism who is also a medical doctor, look no further than these insights (see here) from a physician who's research has previously appeared on this blog (see here).
One might also argue that tackling some of the more 'disruptive' issues associated with autism which have been reported to be linked to greater parental stress (see here) might also be another route to reducing stress. The very interesting paper from McStay and colleagues********** reporting that "child hyperactivity was the only factor significantly related to parenting stress in parents of children with autism" might even tie into some of the observations we've made recently on the use of a GFCF diet (see here) and even explain some of the popularity of this approach.
Indeed, I've not really approached the question of whether comorbidity (including ESSENCE) appearing alongside autism might also be a significant source of parental stress, as one might expect from something like epilepsy or seizure-related disorders for example.
And then, there is the increasingly common scenario of parents (one or both) with autism bringing up children with autism and how that situation might present additional unique parental stresses. Let us also not forget other siblings of the family unit too and how stress can affect them.
What remains apparent is that (a) parenting, as well as very rewarding, can be a stressful activity, (b) parenting a child with additional needs can carry some of its own unique stresses and (c) tackling or reducing that stress has got to be a win-win situation for everyone concerned; importantly not just for the child, but also for parents too (see here) including in relation to related aspects like fatigue.
To close, some music to dance to (dancing is also a very good stress-relieving activity I'm led to believe).... Wham and Wake Me Up Before You Go-Go. And for all you fathers out there who partake of a bit of 'dad dancing', a hypothesis for you to consider...
* Koegel RL. et al. Consistent stress profiles in mothers of children with autism. J Autism Dev Disord. 1992 Jun;22(2):205-16.
** Dykens EM. & Lambert W. Trajectories of Diurnal Cortisol in Mothers of Children with Autism and Other Developmental Disabilities: Relations to Health and Mental Health. J Autism Dev Disord. 2013; 43: 2426-2434.
*** Osborne LA. et al. Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. J Autism Dev Disord. 2008 Jul;38(6):1092-103.
**** Lovell B. et al. With a little help from my friends: psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD. Res Dev Disabil. 2012 Mar-Apr;33(2):682-7. doi: 10.1016/j.ridd.2011.11.014.
***** Neece CL. Mindfulness-Based Stress Reduction for Parents of Young Children with Developmental Delays: Implications for Parental Mental Health and Child Behavior Problems. J Appl Res Intellect Disabil. 2013 Jul 1. doi: 10.1111/jar.12064.
****** Spek AA. et al. Mindfulness-based therapy in adults with an autism spectrum disorder: a randomized controlled trial. Res Dev Disabil. 2013 Jan;34(1):246-53. doi: 10.1016/j.ridd.2012.08.009.
******* Gika DM. et al. Use of a relaxation technique by mothers of children with autism: a case-series study. Psychol Rep. 2012 Dec;111(3):797-804.
******** Bendixen RM. et al. Effects of a father-based in-home intervention on perceived stress and family dynamics in parents of children with autism. Am J Occup Ther. 2011 Nov-Dec;65(6):679-87.
********* Harper A. et al. Respite Care, Marital Quality, and Stress in Parents of Children with Autism Spectrum Disorders. J Autism Dev Disord. 2013 Mar 26.
********** McStay RL. et al. Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism. 2013. 8 October.