Saturday, 10 October 2015

Views on autism from an "unaffected sibling"

It was a bit of a breath of fresh air to read the paper by Lauren Singer [1] (open-access) published in the journal Molecular Autism recently. Detailing the personal experiences of a sibling with a sister with autism who has "gone to walks, raised money via lemonade stands, volunteered in respite programs for families with kids with autism, and participated in autism research studies at the Yale Child Study Center", her very personal account is an important read in amongst the huge peer-reviewed science literature on the topic.

Focused specifically on the growing research interest on how autism manifests across the genders [2], the author discusses various themes that have emerged in this area including the idea of a female protective effect in light of the gender/sex disparity noted in rates of autism (see here). Although an interesting hypothesis [3] the suggestion that girls may be somehow "require greater etiologic load to manifest the same degree of impairment as males" is not however without its criticisms (see here).

Perhaps of greater importance are some valuable points raised by the author on a more personal level. So: "I have experienced firsthand the anguish autism inflicts on the entire family." I appreciate that that last sentence probably does not reflect every families experience of autism and might run counter to some viewpoints included in the debate about disability vs. difference and a focus on 'deficits over strengths', but it is an important sentence to highlight. Not least because Ms. Singer's experiences of growing up with a sister who by all accounts, is 'disabled' by autism and who was subsequently "moved into residential placement" on account of her behaviour posing a risk to her safety is a viewpoint that can sometimes get rather lost in the very heterogeneous chatter about autism. Similar things have also been mentioned in the popular press recently. Further: "Living with Jodie, and now having to live without her, has made me desperate for answers" similarly reflects the realities of living apart from a cherished loved one and the anguish that can bring.

"I also believe that scientists can enhance their careers by leaving the lab once in a while to interact with real people with autism." Without painting every autism researcher with the same brush, the idea that people with autism are people first (yes, I know this runs counter to some of the discussions on the ownership of the autism label) and that autism is very much more than just the sum of a triad/dyad of symptoms, is an important point made here. "Seeing people with autism challenged by daily living skills can make research designed to help them feel much more rewarding" likewise taps into growing calls for a focus on here-and-now research alongside the hows-and-whys research agenda that has prevailed over the years. As a side-note, intervention can mean lots of things, even comparatively simple things [4].

I close with another quote: "My experiences with Jodie and my hopes for her future have inspired me to want to be part of the cutting edge of discovery that will make a difference in the lives of thousands of people." Alongside the idea that families are the 'experts' on their various members, I'd like to think that Ms. Singer's article will be an important call for siblings, other family members and people with autism themselves to become much more engaged in the autism research landscape, and particularly, it's future shaping...


[1] Singer L. Thoughts about sex and gender differences from the next generation of autism scientists. Mol Autism. 2015; 6:52.

[2] Jamison TR. & Schuttler JO. Examining social competence, self-perception, quality of life, and internalizing and externalizing symptoms in adolescent females with and without autism spectrum disorder: a quantitative design including between-groups and correlational analyses. Mol Autism. 2015 Sep 17;6:53.

[3] Robinson EB. et al. Examining and interpreting the female protective effect against autistic behavior. PNAS. 2013; 110: 5258-5262.

[4] Schmidt L. et al. Psychosocial Functioning and Life Satisfaction in Adults With Autism Spectrum Disorder Without Intellectual Impairment. J Clin Psychol. 2015 Sep 25.

---------- Singer L (2015). Thoughts about sex and gender differences from the next generation of autism scientists. Molecular autism, 6 PMID: 26388981