Quality of life and autism continued

"In this study it was found that psychiatric comorbidity, sleeping difficulty, intellectual disability, maladaptive behavior, adaptive functioning, autism symptomatology, main daytime activity and residence were associated with QoL [quality of life], independent of respondent type."

So concluded the findings reported by Ane Knüppel and colleagues [1] continuing an important research theme looking at quality of life with autism in mind (see here and see here and see here). There's nothing specifically novel about the factors reported on as affecting quality of life (QoL) where a diagnosis of autism is mentioned (mental health issues, autism severity, comorbidity, activities, social inclusion) but the fact that authors drew on data from both self-reports and proxy-reports is important and perhaps provides an important dual perspective. Indeed as the authors noted: "Proxy-reported QoL is different from self-reported QoL and should be considered as an alternative source of information." Similar sentiments have been expressed recently (see here).

Having previously talked [2] about the properties of the specific instrument used to gauge QoL with autism in mind, the authors relied on responses on the INICO-FEAPS scale in their investigation. More than 1700 participants with autism completed the scale where: "For 165 individuals with ASD [autism spectrum disorder], self-reports only were available, and for 863 individuals with ASD, only parental proxy-reports were available." The scale itself is pretty comprehensive, consisting of "72 items divided into the following eight subdomains: self-determination, rights, emotional wellbeing, social inclusion, personal development, interpersonal relationships, material wellbeing, and physical wellbeing." A higher score on the INICO-FEAPS scale denotes a higher QoL 'level'. Various other measures were also included for study; some of them based on the setting of the study in Denmark and the fact that Scandinavian countries are particularly 'geared up' for collecting all-manner of details on the basis of various national registries held on the population.

Alongside the results suggesting that various factors seemed to be important to QoL, there were some details to consider. So: "Across all respondent groups, the lowest rated QoL domains were emotional wellbeing (range of means = 71.10–74.05) and interpersonal relationships (range of means = 65.07–71.88), and the highest rated QoL domains were rights (range of means = 83.79–86.21) and material wellbeing." Further, researchers also observed that being employed or in education also correlated with a higher QoL score "compared to individuals without any regular daytime activity" and "significant associations were found for all respondent groups, with lower levels of QoL among individuals living with their parents... and among individuals with ASD living outside the family home with support... compared to individuals living independently without support."

I was also interested in the idea discussed by the authors that: "treating psychiatric comorbidity, reducing maladaptive behavior, raising the level of independence, and offering individuals with ASD an opportunity to be involved in any job-related occupation or to receive education may raise the level of QoL." 'Treating psychiatric comorbidity' is already a research and clinical priority when it comes to autism (see here and see here). Yes, science needs to do a lot better in terms of establishing the 'hows-and-whys' of such comorbidity being over-represented alongside autism but there are some important themes starting to emerge (see here) including that looking at core autism symptoms as being potential risk factors for the appearance of such issues. And once again we can look to an important group of people for further clues as to how such psychiatric issues are indeed perhaps more 'core' than comorbidity (see here).

Although 'reducing maladaptive behaviour' potentially covers a lot of 'challenging' ground - "Behavior classified as self-destructive, breaking belongings, defiant, disruptive, hurtful to others and/or socially offensive" - I don't think anyone would seriously argue against the idea that such behaviours are neither good for the individual nor good for those around them. I'm minded to suggest that the reason(s) for such behaviour are likely to be complex (see here and see here), but one thing that could be useful would be to look at some of the research on particular 'profiles' being present and connected to autism and beyond (see here) as a starting point.

And then there is also the suggestion of a possible effect for society more generally, as in ensuring that education and employment opportunities are available to all and making 'an inclusive society' a priority...

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[1] Knüppel A. et al. Quality of life in adolescents and adults with autism spectrum disorder: Results from a nationwide Danish survey using self-reports and parental proxy-reports. Research in Developmental Disabilities. 2018; 83: 247-259.

[2] Knüppel A. et al. Psychometric properties of the INICO-FEAPS scale in a Danish sample with autism spectrum disorders. Research in Developmental Disabilities. 2018; 75: 11-21.

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On unintentional drowning deaths in children with autism

Sometimes science seems to be science for the sake of science. Y'know, findings are reported and published and are met with either 'so what' or 'what does this mean for me?' sentiments, particularly when dealing with potentially abstract concepts.

The findings published by Joseph Guan and Guohua Li [1] most definitely DO NOT fall into such a category. Their covering of a topic which has potential life-limiting implications - unintentional drowning deaths - in the context of autism is worthwhile repeating again and again and again until everyone sits up and takes note. I might add that other previous research from this authorship team similarly evoke such sit-up-and-listen sentiments (see here).

What did the authors do? Well, simply put, they scanned the Lexis-Nexis® Academic database looking for all newspaper entries covering the terms autism, drowning and boy/girl from the beginning of January 2000 until May 2017 in the United States. They analysed the collected data; retrieving specific details such as "time of day and distance from residence" when it came to such reports.

Results: "During January 2000 through May 2017, US newspapers reported a total of 23 fatal unintentional drowning incidents involving children under 15 years of age with ASD [autism spectrum disorder]." Let's just reflect on that a moment. Twenty-three children / young adults with autism who drowned. Twenty-three lives tragically cut short. Twenty-three families left grieving.

Also: "Data about proximity of the water body to the victim’s residence were available for 11 (47.8%) of the incidents, with all of them within 1000 m of the victim’s residence (mean = 290.7 ± 231.5 m)." And also: "The time of day at which victims were reported missing was available for 15 (65.2%) of 23 incidents, with 2 (13.3%) being in the morning (0:00–11:59), 11 (73.3%) being in the afternoon (12:00–17:59), and 2 (13.3%) being in the evening (18:00 PM – 23:59)." And finally: "Wandering was the most commonly reported activity that led to drowning, accounting for 73.9% of the incidents."

I could go on about the limitations of this study as highlighted by the authors - "small sample size and the availability of information reported in newspaper articles" - but really I have to ask 'does it matter?' The answer: no, such study limitation don't really make too much difference to the final - very final - outcomes reported on.

The fact that wandering (elopement if you will) was a feature of many of the cases found is not new news (see here). It reiterates once again that resources aplenty need to be put into reducing incidences of wandering or at least allowing parents and law enforcement and other agencies every opportunity to locate wandering children/adults as quickly as possible. Some might worry about things like civil liberties when it comes to monitoring someones movements. But in current times, when someone can be tracked by their mobile/cell phone use for example, I'd respectively disagree with such 'civil rights are being impinged' sentiments. Imagine if you will, if one of the various 'tracking' devices currently aimed at those on the autism spectrum was given to every child / every family free of charge at the point of diagnosis? A good use of money methinks...

Water safety is another important part of the current findings. There is science out there talking about how learning to swim might have quite a lot of positives when it comes to autism [2]; perhaps the most important being learning water safety skills. Who would argue with that? And if one wanted to be proactive in this area, how about making water safety and swimming lessons a compulsory part of the learning curriculum for everyone diagnosed with an autism spectrum disorder? Again, a very good use of money methinks and you never know, there may be other benefits too.

I'm not saying that there aren't individual circumstances around every one of those drowning deaths discussed by Guan & Li. I'm not saying that every death could have been avoided. What however I do believe is that armed with the knowledge that drowning is a significant cause of premature death in the context of autism, and knowing a little more about the general circumstances around some of those deaths, there are things that can potentially be done to mitigate future risks to the autistic population and potentially save lives.

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[1] Guan J. & Li G. Characteristics of unintentional drowning deaths in children with autism spectrum disorder. Injury Epidemiology 2017; 4: 32.

[2] Alaniz ML. et al. The Effectiveness of Aquatic Group Therapy for Improving Water Safety and Social Interactions in Children with Autism Spectrum Disorder: A Pilot Program. J Autism Dev Disord. 2017 Dec;47(12):4006-4017.

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On housing and autism

The commentary published by David Mandell [1] provides some food for thought today pertinent to the on-going debate about "how and where to house adults with autism."

I've kinda touched upon this complicated subject in past blog posts (see here) but wouldn't dare think that any quick and easy solutions are going to be forthcoming on this important topic.

Housing for those on the autism spectrum (and beyond) has a patchy history across the globe. From the dark days of mass institutionalisation of those with psychiatric and developmental disabilities to moves towards 'care in the community', one can almost chart how society's views and attitudes to some of its most vulnerable people have seemingly advanced in a relatively short space of time. As Mandell points out: "institutions and the practices that occur within them were hidden from public view, which led to little accountability and serious abuses" reflecting how moves towards "greater observability and accountability" have probably been a primary driver in the switch in housing options.

But all has not been plain sailing in this transition. Many people here in Blighty remember those harrowing scenes filmed in places such as Winterbourne View, a place meant to be 'home' for many people, and with it, meant to provide all the trappings of home such as happiness, comfort and dignity; all sadly lacking in that case. There have, as Mandell also acknowledges, also been serious misgivings about how community services serve all those on the autism spectrum particularly when "caring for individuals with more profound impairments." A recent and relevant example of this can be read here. Balancing civil rights such as "inclusion and community participation" with basic needs such as actually finding suitable housing arrangements is a task still faced by far too many.

As I've said, there are no quick and easy solutions to ensuring that housing services meet everyone's needs. I do like the ideas that Mandell discusses in terms of a change of focus when it comes to housing arrangements in the context of autism, where "happiness and life satisfaction" and care quality are key over and above generic requirements such as inclusion and community participation. By saying that I'm not suggesting that inclusion and community participation aren't and shouldn't be important (see here for example) but rather that mandating them when it comes to residential options for those on the autism spectrum perhaps risks putting a 'one-size-fits-all' recommendation on what is supposed to be a personalised and tailored core issue. Living in the countryside or remote areas as quite a few people in the general population also do - "segregated farming communities" - should not for example, be viewed as 'a worse option' if and when someone is happy in such a setting and experiences a good quality of life. Even worse, that by housing people in "poor neighborhoods with few opportunities for community engagement" purely on the basis of concepts such as social inclusion, risks putting vulnerable adults in an even more vulnerable position (combining at a time when care resources and finances are already reaching breaking point).

And when it comes to residential placement for children when required [2] similar considerations also might apply... happiness, life satisfaction and good quality care and support. Simple.

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[1] Mandell DS. A house is not a home: The great residential divide in autism care. Autism. 2017 Oct;21(7):810-811.

[2] Benderix Y. et al. Parents' experience of having a child with autism and learning disabilities living in a group home: a case study. Autism. 2006 Nov;10(6):629-41.

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Ariel pesticide use and neurodevelopmental diagnoses patterns

"When compared with surrounding areas, the zip codes exposed to yearly aerial pyrethroid spraying had a higher prevalence of ASD/DD [autism spectrum disorder/childhood developmental delay]."

One does has to be a little careful in interpreting the results published by Steven Hicks and colleagues [1] (open-access available here) looking at "ASD/DD diagnoses rates in an area near our regional medical center that employs yearly aerial pyrethroid pesticide applications to combat mosquito-borne encephalitis" compared with control areas with "no state-approved aerial applications." Correlation after all, is not the same as causation. But I found the data from Hicks et al to be rather interesting and worthy of a blog entry in light of other, independent peer-reviewed data (see here).

So, looking at all children who were evaluated over a 5-year period at "one of six pediatric outpatient clinics" in New York state, researchers divided participants up depending on their zip code "into aerial-exposed and control zip codes" when it came to pyrethroid spraying. Said spraying was in relation to use of an insecticide "as a preventive tool against mosquitoes carrying eastern equine encephalitis (EEE) and West Nile virus (WNV)." The authors noted that: "The effects of this application on neurodevelopmental patterns in local children have not been investigated."

Pesticide exposure was estimated based on the amount used over a 3-year period in each zip code and reported as kilograms per square kilometre. Alongside looking at rates of "neurodevelopmental delay (ASD and DD)" as a function of zip code/exposure patterns, researchers also included various potentially modifying factors in their calculations: "regional characteristics (poverty, pesticide use, population density, and distance to medical center), subject characteristics (race and sex), and local birth characteristics (prematurity, low birthweight, and birth rates)."

When all was said and done, authors observed a significant relationship between ASD/DD and aerial pesticide exposure. They noted that: "Zip codes with aerial pyrethroid exposure were 37% more likely to have higher rates of ASD/DD."

Authors caution that "this study is observational and does not establish a causal relationship between pyrethroid exposure and ASD/DD" but also note that there needs to be a lot more experimental study done on how aerial spraying is conducted and any possible effects on the population down below. And before you say anything, yes, I know that aerial spraying is being done for a perfectly valid reason. But that's not to say it should be just given a free pass in terms of either effectiveness or safety...

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[1] Hicks SD. et al. Neurodevelopmental Delay Diagnosis Rates Are Increased in a Region with Aerial Pesticide Application. Front Pediatr. 2017 May 24;5:116.

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Estimated autism prevalence in Northern Ireland: 2.3% for 2015-2016

I'm blogging on a Sunday again but for a very good reason: The prevalence of autism (including Asperger’s Syndrome) in school age children in Northern Ireland 2016. The main report is here and includes that quite important graphic accompanying this post.

The press release summarises the important points including the observation that "including Asperger syndrome" the estimated prevalence of autism among school-aged children in Northern Ireland (NI) "has increased by 1.1 percentage points from 1.2% in 2008/09 to 2.3% in 2015/16." Indeed, the estimated autism prevalence rate for boys in 2015-2016 is approaching 4%.

When looking at autism rates across the (school) year groups, we are told that: "Prevalence across all school years was higher during 2015/16 compared with 2008/09." Further: "Looking at Years 1 – 4 (5 – 8 year olds) in 2015/16 there is a steady rise in the prevalence rate of autism. These Year Groups also had the largest percentage increase in the numbers between 2008/09 and 2015/16. This indicates that most identification of autism is occurring when children are aged between 5 and 8 years old."

The question of urban vs. rural rates of autism also showed some interesting trends: "[a] decrease in the
year on year growth of the number of children identified with autism in the rural population
from 13% in 2010/11 to 4% in 2015/16. In comparison the urban autistic population has
increased at an average of 11% each year over the same time period."

What's missing from this data? Well, I'd like to have seen something written about the various comorbidities that seem to be over-represented when a diagnosis of autism is made such as learning disability and the rising star that is attention-deficit hyperactivity disorder (ADHD). The data also says relatively little about how many children are still waiting to be diagnosed in NI as per some media reports on "thousands". I would also suggest that other parts of the UK could learn from NI in terms of data on their [estimated] autism prevalence rates in similar populations.

The bottom line: [estimated] autism prevalence rates are still increasing in many parts of the world for whatever reason. We can argue all day about the factors pertinent to the increase and whether the old 'better awareness' explanation really cuts the mustard these days. The reality however is that more money, support and services need to be pumped into the various educational and health care systems so that potentials can be reached and inequalities are minimised.