Wednesday, 2 July 2014

Quality of life and autism

The BBC ran an interesting article on their website recently titled: Happiness and disability. Discussions about the disability paradox - whereby some people with often significant and persistent disability report experiencing a good or excellent quality of life (QoL) - got me thinking about QoL and in particular, how it might relate to the very wide and very heterogeneous autism spectrum. I might add that I am not insinuating that everyone diagnosed on the autism spectrum are 'disabled' but rather that as per the UK definition of the word (see here), "a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities" is a hallmark for quite a proportion of people on the autism spectrum.

At the same time, the findings from the literature review by Chiang and Wineman [1] should really be making people sit up and take note: "The majority of the individuals with ASD [autism spectrum disorder] had poor QoL [quality of life]". Indeed, not for the first time have such sentiments been voiced in the research literature as per another meta-analysis by van Heijst & Geurts [2] who reported: "Across the lifespan, people with autism experience a much lower quality of life compared to people without autism".
What a view... @ Wikipedia 

Quality of life by the way, can mean quite a few things but for the purposes of this post I'm talking about overall wellbeing including things like life satisfaction and health including mental and physical health.

As stated, QoL is often a very subjective thing influenced by all manner of variables, some social, some biological and some psychological. As one example I'd draw your attention to the concept of resilience [3] and the effect that can have but there are many others.

QoL is also a dynamic concept which can and does change for everyone following life's ebbs and flows. If I happened to scoop the lottery tomorrow I'd wager that my QoL would probably increase a few points (albeit with potential caveats). Likewise, when it comes to one of the most important influences on QoL, physical health, some people will know what happens to QoL when health deteriorates or when faced with the prospect of even short-term restrictions to normal activities.

I should also mention that just because I'm talking about research in the most part suggesting poorer QoL in relation to autism, I'm not trying to stigmatise or anything like that. Poor QoL is not an exclusively autism-related feature; just as I appreciate that for some people on the autism spectrum, QoL is actually pretty good.

A trawl through some of the research literature in this area highlights a few common themes.

Social contact and networks
I've talked before on this blog about issues such as loneliness and how detrimental it might potentially be for one's health (see here). Loneliness or a lack of friends or social support can be an issue for some on the autism spectrum, although I'd hasten to add that sweeping generalisations about everyone with autism craving lots of social contact might be misplaced; not everyone wants to be the life and soul of the party. There has been some focus on how loneliness and social isolation can and do impact on QoL with autism in mind. The paper by Renty & Roeyers [4] talked about how the availability of a "supportive social network" seemed to be an important factor when it came to QoL in high-functioning adults with autism. Just as an aside, I didn't pick the term 'high-functioning', the authors did.

The paper by Micah Mazurek [5] (a favourite researcher on this blog) similarly pointed to the detrimental effects that loneliness seemed to have in cases of autism on subsequent QoL. Based on self-report (something which I'll be coming to shortly) "loneliness was associated with increased depression and anxiety and decreased life satisfaction and self-esteem, even after controlling for symptoms of autism spectrum disorders". A "greater quantity and quality of friendships were associated with decreased loneliness" was another rather obvious finding, implying one possible target for possible intervention. Perhaps also relevant to the whole issue of QoL and autism was the focus on comorbidity in this paper: "number of friends provided unique independent effects in predicting self-esteem, depression, and anxiety above and beyond the effects of loneliness".

Social contact / participation issues were also addressed in the paper by Lee and colleagues [6] looking children with autism with QoL in mind. They reported: "Children with autism were significantly less likely to attend religious services, more likely to miss school, and less likely to participate in organized activities". Likewise, Orsmond and colleagues [7] reported similar things: "Young adults with an ASD were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated". I could go on but I won't. Suffice to say that social contact and participation seem to be big influencers on QoL in quite a few cases of autism.

Having already mentioned how certain comorbidity might also be linked to measures of QoL it's also worthwhile going through some of the other research in this area. I'm pretty enthusiastic that comorbidity when it comes to autism is something deserving of a lot more investigation (see here). By comorbidity, I'm talking about both psychological comorbidity such as depression and anxiety (especially anxiety) all the way up to something like psychosis (see here) or schizophrenia (see here) and the other more somatic comorbidity reported in some cases of autism (see here). I don't also doubt that there is a relationship between psychologically-manifesting comorbidity and physiological comorbidity with autism in mind (see here).

Anyhow, I start this section with reference to the paper by Bauman [8] who very succinctly described how medical comorbidity can be a "challenge to diagnosis and treatment" when it comes to autism. Perhaps most relevant to the topic of this post was the assertion: "Many of these medical conditions are treatable, often resulting in improved developmental gains and quality of life for the patient and family". Certainly looking back to a post I did fairly recently on undetected medical comorbidity and autism (see here) I wouldn't argue with such a sentence. Included in the area of health and medical comorbidity potentially impacting on QoL in autism is the various research looking at issues like obesity and autism [9] and conditions which can have the most severe impact on QoL such as epilepsy and even something like self-injury and aggression.

The paper by van Steensel and colleagues [10] looking at how anxiety and anxiety disorders comorbid to autism "predicted a lower quality of life" is an important finding. As previously mentioned, anxiety is something which can be absolutely disabling when it comes to autism (see here) potentially even over and above the experience of more core symptoms for some people. It's little wonder that when present, it has such a huge impact on QoL.

I've singled out employment as being an important area for QoL in autism because there is quite a lot of research on the topic. I know there are many more moves nowadays to raise the issue of under-employment following a diagnosis of autism, and certainly it seems like common-sense to assume that having a job - a meaningful and appropriately paid job - will almost certainly impact on a persons QoL, whether they have autism or not. The findings from Mavranezouli and colleagues [11] provide as stark a message as is possible in terms of the current employment prospects when someone is in receipt of a diagnosis on the autism spectrum. The findings from Barneveld and colleagues [12] highlighted how most people with autism included in that study "were less satisfied about their work or education.." than other groups examined based on the finding that quite a large proportion of this cohort were without paid employment and "many were social security recipients". Other studies have arrived at similar conclusions [13]. I probably don't need to say much more on the topic of unemployment and how it may adversely affect QoL in autism aside from perhaps also putting the opposing viewpoint across that employment under the wrong conditions can also be a source of stress and anxiety for some on the spectrum [14] and onwards lead to a reduction in QoL. It's about finding a balance.

Who reports?
I've included this section to reflect the body of research literature looking at similarities/differences in terms of who reports about QoL when it comes to autism: first-person accounts and reports vs. other persons. This issue has surfaced in discussions on other topics; for example, the work looking at anxiety and autism [15]. The paper by Sheldrick and colleagues [16] talked about differing opinions of QoL in adolescents with autism based on self-report and parental reports. Ikdea and colleagues [17] found a similar situation. There are lots of ways that second-hand reports can 'bias' very subjective concepts like QoL; parents and caregivers for example, may be more inclined to make comparisons with other, non-autistic populations which will invariably impact on how the QoL of their own children is perceived. The paper from Shipman and colleagues [18] might have noted something like this with their results: "parents of adolescents [with autism] reporting lower QoL when compared with adolescent reports". The main point from this collected work being that, where feasible, measures of QoL in autism should be reported by those with autism.

Although intervention is not a universally welcomed word when it comes to the very wide and very heterogeneous autism spectrum, I'm pretty sure that this is one area where there might be more agreement among the autism community. In the broadest sense, intervention to improve QoL for people on the autism spectrum implies addressing some of the topics I've previously discussed in this post as and when required. Opportunities seems to be an important word.

I'm a great believer in sport and leisure as being roads to improving health and wellbeing for everyone and onwards QoL. Autism is no exception as per studies like the one from Fragala-Pinkham and colleagues [19] talking about a group swimming and aquatic exercise program for kids with autism. Martial arts programs are another option; also potentially having some interesting knock-on effects based on the use of Kata training as per the study by Bahrami and colleagues [20] talked about in a previous post. Attendance at leisure clubs and societies might also be something considered to influence QoL in autism following the results from García-Villamisar and colleagues [21]. Importantly, they also talked about stress reduction being linked to improved QoL. For adults, similar social and group situations may likewise be useful to consider, bearing in mind that using something like social media as a substitute for social contact might not necessarily help with issues such as loneliness [22].

The slightly more contentious topic of interventions aimed at reducing or ameliorating the signs and symptoms of autism being potentially linked to an improved QoL is another side to this story. I've touched upon the issue of QoL in relation to some of my peer-reviewed work looking at dietary intervention in cases of autism [23]. We didn't actually measure QoL (although we perhaps should have done) but certainly considering the study by Kushak and colleagues [24] talked about in a previous post (see here) highlighting how lactose intolerance "may contribute to abdominal discomfort, pain and observed aberrant behavior" one might see how something like pain could adversely affect QoL. Certainly this adds a new dimension to the chatter about the resurrected PETA advert recently (see here) which I've kinda covered in another post.

The paper by Ramirez and colleagues [25] follows a similar line of thought and how their intervention led to a "reduction in aberrant behaviors, increased gastrointestinal function, and improved quality of life". I might add that I'm just using that case report as an example rather than making any specific recommendation. And then there is the question of medication as a means to improving QoL in cases of autism. At least one review paper has hinted that where measured, QoL can be positively influenced by certain medications [26] but I dare say that individual measures of QoL are going to be governed by factors such as response to medication and the presence or not of those all-important side-effects.

More to do
Although I have gone on a bit in this post, I've only really scratched the surface when it comes to the various research on QoL in autism. I've not talked about the possibility of gender differences in QoL with autism in mind, nor how autism might impact on the QoL for other family members including siblings. Whether QoL measurements might also differ across the autism spectrum as a function of factors such as optimal outcome (see here) or cognitive abilities or even ageing are other areas for exploration. These are perhaps ramblings for another day. What does come across from the collected literature in this area is that QoL is an important concept in relation to autism. Whilst not everyone on the autism spectrum presents with a poorer QoL than other groups or the more general population, further efforts should be directed towards those that need and want improvements in their QoL in order for lives to be lived to their full potential as per the findings from Ahlström & Wentz [27].

Music to close, and based on the assumption that live music therapy may be beneficial to QoL for some... here is the Boss who is arguably one of the best live acts ever to grace the musical stage: Glory Days.


[1] Chiang H-M. & Wineman I. Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Res Autism Spec Disord. 2014; 8:974-986.

[2] van Heijst BF. & Geurts HM. Quality of life in autism across the lifespan: A meta-analysis. Autism. 2014 Jan 17.

[3] Hildon Z. et al. Examining resilience of quality of life in the face of health-related and psychosocial adversity at older ages: what is "right" about the way we age? Gerontologist. 2010 Feb;50(1):36-47.

[4] Renty JO. & Roeyers H. Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism. 2006 Sep;10(5):511-24.

[5] Mazurek MO. Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism. 2014 Apr;18(3):223-32.

[6] Lee LC. et al. Children with autism: quality of life and parental concerns. J Autism Dev Disord. 2008 Jul;38(6):1147-60.

[7] Orsmond GI. et al. Social participation among young adults with an autism spectrum disorder. J Autism Dev Disord. 2013 Nov;43(11):2710-9.

[8] Bauman ML. Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics. 2010 Jul;7(3):320-7.

[9] Curtin C. et al. Obesity in children with autism spectrum disorder. Harv Rev Psychiatry. 2014 Mar-Apr;22(2):93-103.

[10] van Steensel FJ. et al. Anxiety and quality of life: clinically anxious children with and without autism spectrum disorders compared. J Clin Child Adolesc Psychol. 2012;41(6):731-8.

[11] Mavranezouli I. et al. The cost-effectiveness of supported employment for adults with autism in the United Kingdom. Autism. 2014 Apr 29.

[12] Barneveld PS. et al. Quality of life: a case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Compr Psychiatry. 2014 Feb;55(2):302-10.

[13] Griffith GM. et al. 'I just don't fit anywhere': support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism. 2012 Sep;16(5):532-46.

[14] Baldwin S. et al. Employment Activities and Experiences of Adults with High-Functioning Autism and Asperger's Disorder. J Autism Dev Disord. 2014 Apr 9.

[15] Storch EA. et al. Multiple informant agreement on the anxiety disorders interview schedule in youth with autism spectrum disorders. J Child Adolesc Psychopharmacol. 2012 Aug;22(4):292-9.

[16] Sheldrick RC. et al. Quality of life of adolescents with autism spectrum disorders: concordance among adolescents' self-reports, parents' reports, and parents' proxy reports. Qual Life Res. 2012 Feb;21(1):53-7.

[17] Ikeda E. et al. Assessment of quality of life in children and youth with autism spectrum disorder: a critical review. Qual Life Res. 2014 May;23(4):1069-85.

[18] Shipman DL. et al. Quality of life in adolescents with autism spectrum disorders: reliability and validity of self-reports. J Dev Behav Pediatr. 2011 Feb-Mar;32(2):85-9.

[19] Fragala-Pinkham MA. et al. Group swimming and aquatic exercise programme for children with autism spectrum disorders: a pilot study. Dev Neurorehabil. 2011;14(4):230-41.

[20] Bahrami F. et al. Kata techniques training consistently decreases stereotypy in children with autism spectrum disorder. Res Dev Disabil. 2012 Jul-Aug;33(4):1183-93.

[21] García-Villamisar DA. & Dattilo J. Effects of a leisure programme on quality of life and stress of individuals with ASD. J Intellect Disabil Res. 2010 Jul;54(7):611-9.

[22] Mazurek MO. Social media use among adults with autism spectrum disorders. Computers in Huam Behaviour. 2013; 29: 1709-1714.

[23] Whiteley P. et al. Gluten- and casein-free dietary intervention for autism spectrum conditions. Front Hum Neurosci. 2013 Jan 4;6:344.

[24] Kushak RI. et al. Intestinal disaccharidase activity in patients with autism: effect of age, gender, and intestinal inflammation. Autism. 2011 May;15(3):285-94.

[25] Ramirez PL. et al. Improvements in Behavioral Symptoms following Antibiotic Therapy in a 14-Year-Old Male with Autism. Case Rep Psychiatry. 2013;2013:239034.

[26] Moyal WN. et al. Quality of life in children and adolescents with autism spectrum disorders: what is known about the effects of pharmacotherapy? Paediatr Drugs. 2014 Apr;16(2):123-8.

[27] Ahlström BH. & Wentz E. Difficulties in everyday life: Young persons with attention-deficit/hyperactivity disorder and autism spectrum disorders perspectives. A chat-log analysis. Int J Qual Stud Health Well-being. 2014 May 28;9:23376.

---------- Chiang, H., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature Research in Autism Spectrum Disorders, 8 (8), 974-986 DOI: 10.1016/j.rasd.2014.05.003