"The Importance of Adolescent Self-Report in Autism"

The findings reported by Jessica Keith and colleagues [1] provide the blogging fodder today and a rather important message about the value of self-report in the context of autism, but also with one or two caveats too.

The name of the research game was to investigate the "consistency of adolescent and parent reports of anxiety and auditory sensitivity in individuals with ASD [autism spectrum disorder]" as well as examine "their validity via comparisons with sympathetic arousal at baseline and in response to an auditory challenge." This, on the basis that anxiety is not an uncommon diagnostic bedfellow when it comes to autism (see here for example) and alongside, auditory sensitivity also having quite a long established relationship with some autism (see here).

As per the title of this post taken from the Keith paper - "The Importance of Adolescent Self-Report in Autism" - an important focus of the study was to look-see whether parental reports of anxiety and auditory sensitivity 'matched up' with self-reports from adolescents with autism themselves. Authors reported that they did to a degree, but that also self-report might also provide some greater depth: "demonstrating greater self-reported (than parent-reported) anxiety and sensory symptoms." Indeed authors concluded: "adolescents with ASD have a unique perspective on their internal experience, which can complement parent reports and provide a more comprehensive assessment of symptoms in research and clinical settings."

I don't think anyone should be too surprised that asking adolescents about their own experiences of anxiety, sensory issues or anything else is probably going to yield far more accurate results than proxy reporting or second-hand accounts alone. Indeed, in these days where more and more people diagnosed as being on the autism spectrum are offering up their own first-hand accounts of their experience of autism, this represents a good thing in terms of 'getting it right' when it comes to diagnosing and managing important and often life-affecting symptoms or clinical diagnoses such as anxiety.

Caveats? Well, yes. I'm all in favour of people self-reporting and providing valuable insight into their own experiences. What is slightly less appealing however is that such self-reporting is not a luxury shared by all on the autism spectrum. The lack of self-report coming say, from some under-represented parts of the autism spectrum (see here) can sometimes mean that 'autistic experiences' are skewed towards more 'able' (or should that be 'vocal') parts of the autism spectrum; this despite the oft-used phrase: if you've met one autistic person, you've met one person with autism (or words to that effects). A solution? How about devoting more research and clinical resources to 'enabling' those traditionally not thought to have the capacity for complicated self-report to do so? Indeed, a participatory solution would perhaps be the best step forward I think (see here).

Oh, and also bear in mind that it needn't be self-report versus parent-report when it comes to something like anxiety in the context of autism. Both viewpoints can provide something important [2] on the basis that individuals know themselves but parents also have quite a unique viewpoint of their children and their behaviour across their formative years...

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[1] Keith JM. et al. The Importance of Adolescent Self-Report in Autism Spectrum Disorder: Integration of Questionnaire and Autonomic Measures. J Abnorm Child Psychol. 2018 Aug 2.

[2] Adams D. et al. Parent descriptions of the presentation and management of anxiousness in children on the autism spectrum. Autism. 2018 Aug 16:1362361318794031.

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Say my name

"At 9 months of age, infants developing ASD [autism spectrum disorder] were more likely to fail to orient to their names, persisting through 24 months."

So said the findings reported by Meghan Miller and colleagues [1] investigating an often over-looked but typically informative question relevant to childhood autism screening and assessment: the response to name. Anyone who knows a little about instruments such as the ADOS (Autism Diagnostic Observation Schedule) will already know about the importance of response to name ("a full response is defined as orientating to and making eye contact with the examiner who calls his name") as part of assessment.

Based on the inclusion of some 150 infants, siblings of children with or without a diagnosis of autism, a response to name task was carried out at various intervals in infancy in this prospective study ("6, 9, 12, 15, 18, and 24 months of age"). At 3 years of age, child participants were "classified into 1 of 3 outcome groups: group with ASD (n = 20), high-risk group without ASD (n = 76), or low-risk group without ASD (n = 60)." As per the opening sentence, consistently not responding to their name was a feature of quite a few of those children who subsequently went on to develop autism. Some but not all. Alongside other findings reported in relation to receptive language for example, the authors concluded: "Infants who consistently fail to respond to their names in the second year of life may be at risk not only for ASD but also for greater impairment by age 3 years."

Such work continues a theme from some of the authors on the Miller paper [2] and how relatively simple observations during play interaction [3], could be valuable variables when it comes to ascertaining potential risk of developing autism. Of course one needs to be careful that a lack of response to name does not automatically mean that an autism diagnosis is imminent or indicated as per the typical requirement to check a child's hearing for example and to consider the possibility of other diagnoses being applicable. I might also remind readers of the potential effects of regression when it comes to autism (see here) and how not every child presents with autistic features in early infancy (something that needs to be taken into account when it comes to other recent research too).

To close, say my name...

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[1] Miller M. et al. Response to Name in Infants Developing Autism Spectrum Disorder: A Prospective Study. J Pediatr. 2017 Feb 2. pii: S0022-3476(16)31566-9.

[2] Nadig AS. et al. A prospective study of response to name in infants at risk for autism. Arch Pediatr Adolesc Med. 2007 Apr;161(4):378-83.

[3] Trillingsgaard A. et al. What distinguishes autism spectrum disorders from other developmental disorders before the age of four years? Eur Child Adolesc Psychiatry. 2005 Mar;14(2):65-72.

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Miller M, Iosif AM, Hill M, Young GS, Schwichtenberg AJ, & Ozonoff S (2017). Response to Name in Infants Developing Autism Spectrum Disorder: A Prospective Study. The Journal of pediatrics PMID: 28162768

Hears, ears and autism

It has been mentioned on quite a few occasions.

Parents or caregivers initially suspect that their young child presents with a hearing problem when, for example, the child seems non-responsive to their name being called or when their attention is sought (see item 14 of the M-CHAT). The child submits to a hearing test and some of the time, nothing untoward is found. The question is then asked: could it be autism?

Likewise, there have been occasions when parents have initially suspected autism and, following a hearing test, it has transpired that the child has hearing problems. You can see that there is some overlap here.
Like visual impairment, hearing impairment (deafness, hard-of-hearing, if you wish) moves across quite a bit of ground; ranging from the source of the problem, through to the extent of the loss. Also like sight, many people would describe hearing as probably being one of the more primary senses in terms of its importance to daily life - language and communication, social interaction, balance, etc (some of these sound familiar?).

Hearing is so important a sense that, certainly here in the UK, the day of (or day after) birth, newborns have a hearing screen complimentary of the NHS Newborn Hearing Screening Programme. From what I am aware, there is no equivalent programme offered for sight throughout infancy; allowing though, for the difficulties of objective vision testing in newborns.

Looking at the rates of hearing loss in autism and in the general population, the RNID estimate that 1 in 1,000 children (0.1%) in the UK are deaf at age 3. The figures for other age-groups are slightly more complicated but between the ages of 16-60 years, the estimated prevalence of all types of deafness is 6.6%.
In autism, the estimated occurrence of co-morbid hearing loss (all types) is round about 10% in children and adolescents (note that this is a study published in 1999 carried out in Sweden). Obviously the age ranges don't exactly match up with the RNID figures, but the general suggestion is that hearing loss may be more prevalent in autism compared with the general population figures.

Issues with hearing in autism are not solely confined to a loss of function. Some people with autism (and their parents / caregivers) report issues with the perception of hearing; that is things like hyperacusis. There is some good evidence to suggest that the perception of loudness might be perturbed in some cases of autism. Indeed, for some children, the option of ear defenders / ear plugs is a vital course of action to block out what can often be quite disturbing sensory input.

What causes such hyperacuity? I don't think anyone has an answer for that yet. There is some suggestion that it might be down to sensory gating or temporal processing in specific groups on the autism spectrum but much more research is required. Readers may remember my recent entry on vision and autism; perhaps there is some shared mechanism with the perceptual issues highlighted in that area too - whereby our senses are linked together?

What can be done about hyperacusis? Again, there are no universally 'right' answers to this. My first thought would be that adapting the environment to the child/person with autism should be key. It is however probably impossible to remove all sound altogether - also impractical for a person who might have to go to school, go outside, etc.

Like the various comments on vision processing in autism, one course of action proposed is to think about ambient noise and its potential effect. The humming of the lights; certain pitches in people's voices; singing; dogs barking etc - these are all things which have been suggested by people with autism to be a source of often, real irritation (obviously there are a lot of other things too).

I previously mentioned ear defenders as one option, and indeed this young lady found them to be useful for her (also her iPod - no advertisement intended). Various other options have also been suggested, including things like auditory integration therapy (AIT) - although make sure that you do your research first. One final point of information and help may also come from a referral for the child to their local audiologist.

Most guidelines for autism screening and diagnosis do include some reference to hearing assessment. Hopefully also this will be included in the upcoming NICE guidelines on autism, and indeed research also expanded on the important issue of how hearing and autism are connected.