The Cost of Inaction

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

Throughout the troubled relationship between the AutismFamily and AutismSpeaks, a common theme coming from many people I love in the Family is concern that children (and, more broadly, people of all ages) with autism are demonized by talk of autism as an “epidemic” (in fairness, AS does seem aware of the correct technical usage of this term) and what seems like scaremongering, particularly to young parents whose lives might be “ruined” by autism. If you think from the perspective of an autistic adult or an actual autism parent, it can seem reasonable — they love their children (and hopefully themselves, but let me not digress on the difficulty of learning to love oneself, or myself as the case may be, right now). They face challenges, barriers, and stigma, but they may well not see their lives as ruined. Actually, as a psychologist, feminist, and human being, I hope no one sees their life as ruined, ever — think of all the fantastic and wonderful things that came from lives that were supposedly ruined.

I understand languaging is hard. I work in a healthcare environment, so I refer to the people I serve, clinically, as patients. And most of them call me doctor (I’m happy to be on a first name basis with my handful of teen and young adult therapy patients, who need parity in this relationship and with whom I now have a long history). Accordingly, I do diagnose autism, and the team I built does provide therapies. Personally, at this point, I think arguing about these choices of language is far less important than offering the things we and others have built and are building to kids and their families, even though I do respect the languaging and think this debate needs to continue. To me, right now, I believe my nuance in calling this “therapy” and not a “support” is appropriate, and I am more focused on making it work better, be more fun, and reach more kids, than changing its name. Also, in fairness, none of the people who complain to me about these nuances have ever come to Grand Rapids to see us, and rarely do the people who come to see us really ever complain about these nuances.

In addition to how we talk about what we do for the AutismFamily itself, the second languaging challenge is what we say about why we do what we do. There’s a gap here, because many people outside the AutismFamily think what I do is dreary and sad and they tend to respond with something that comes across as, “God bless you; I’m glad someone else is doing it, so I don’t have to worry about it!” They have no idea how fun and rewarding my job is, how I’ve never had any opportunity to do anything as fulfilling as this. But beyond that part, there’s also the more societal “why’s.” Particularly in political and social circles, with funders and donors, and allies and advocates more broadly outside the AutismFamily, I do also talk about the cost of inaction. I use the same statistics doubtless most of you have memorized — the cost of providing early, intensive therapies, and the amount of cost offset down the road by reduced need for special education, adult housing supports, as well as that child going on to obtain a profession, pay taxes, and contribute in all kinds of new ways that might credibly be limited without the therapy. Alongside this, at every step of this process, that child gets more choice – choice to state her or his needs, choice to learn how to dream, dream their own dreams, and then pursue them. Choice to define their own destiny. I talk about both of these things because, to me, these are both legitimate stakes the broader community has for investing in the AutismFamily — the fiscal stake, and the moral stake. And urgency is important, because this infrastructure of services, supports, therapies, whatever you want to call thenm

Before I started going to my current church, my pastor gave a sermon in which she argued that, central to the Christmas message, is the idea that the birth of each child, everywhere, is a sacred event. That goes for every child born with autism, whether they learn to talk or not, whether we celebrate the day they write a patent or the day they write their name. At the same time, their parents wanting them to learn and grow is not monstrous, either, although we may well continue to learn and change in this area, and there may be things we do today, which turn out, in hindsight, to be wrong. They are not monsters, nor are the vast majority of people trying to build the support system they need (I said, vast majority…there are exceptions).

What I’m curious about is how we advocate together — people with autism young and old, their families and friends, and the professionals and providers and autrepreneurs, who are in this because they see the opportunity of the AutismFamily and want to develop it and serve you — in a way that respects everyone and their ability to contribute, that does not use language to demean or silence voices or experiences (“verbal” or not), and yet maintains the pace of action, which over the last 10-15 years, has clearly and dramatically improved. Now that the era of fighting for AutismAction in 2013 is nearly over, and the fight of 2014 is about to begin, what is that balance that will keep us all focused on our common foes — ignorance, inaction, apathy, stigma? And, ultimately, focused on the best and foremost foe: our own personal best, as we strive to prove that we can do even better.

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2 thoughts on “The Cost of Inaction

  1. Hi Mohan. What a lovely and thoughtful piece. As you know, I'm not sure about the idea of 'therapy' in relation to autistic children, though I think you give solid reasons as to why it could be justified. Equally, I'm not convinced by the idea that 'early intervention' leads to better long term outcomes. Has this really been proven? This notion puts a lot of pressure on parents if they can't get support for their very young children. But again, I completely agree with you that the right support, at the right time, will reduce the need for longer term, more intensive and costly help. That is such an important argument. But for me, the most significant point of this piece is what you say about every child being 'sacred'. I am not religious, but I firmly 'believe' that when society at large comes to realise that the lives of autistic children as just as important as any others, and to really absorb that view, then we can start moving forward and present a more united front.

  2. Hi Becky, thank you for your lovely comment! You raise a very important point, that there needs to be more longitudinal study of early intensive interventons in terms of the individual outcomes trajectories (there is at least some support, however, for the long-term benefit, for instance: http://www.ncbi.nlm.nih.gov/pubmed/24313878 and there is relatively more established evidence of the reduced need for adult services).

    I love your thought on what we need to have a unified front. In fact, if you'd ever like to guest blog about it, please e-mail me via the link on the right side of my blog.

    Thank you again for commenting and for fighting alongside and on behalf of people with autism!

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