Thursday 24 August 2017

"What Happens When I Can No Longer Support My Autistic Relative?"

I've kinda touched upon the subject matter examined in the paper by Renske Herrema and colleagues [1] before on this blog (see here). Detailing important results on views and concerns about the future and specifically what will happen to loved ones with autism when families are no longer able to care for or support them, the findings approach a difficult but important question. Part of that questioning surrounds the perception that social and other supports for example, are pertinent and in place to keep loved ones safe, cared for and able to deliver suitable services onward to ensuring a nurturing environment that caters to the individual's needs, wants and wishes.

Drawing on data from "120 family members of autistic adults" (or adults with autism if you prefer), authors asked about "concerns about the future for their relative" via an online survey. Several key themes emerged from their inquiry on things like concerns for individual needs not being met, the happiness of their loved one and the question of who will care for them as and when primary caregivers are not able to or are not around to care for them. These concerns were things that quite regularly featured in the minds of family members according to their online reporting.

The authors talk about the need for planning to start early - 'timely' - when it comes to ensuring that support is both available now and in the future for family members with autism. I would definitely agree with such early planning given the history of almost Herculean efforts that parents/caregivers have had to go through to ensure that their loved ones are provided the same rights as anyone else. Indeed, legacies have already evolved from such planning (see here). I do worry however that there are factors that parents and other family members seem to have to overcome in modern times; where austerity is pushing social care to breaking point (at least here in Blighty) and the availability of social support being more and more reserved for those who cannot live independently potentially at the expense of the 'look like they're managing' masses...


[1] Herrema R. et al. Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults. J Autism Dev Disord. 2017 Jul 28.


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