Wednesday, June 29, 2011

Unfriendly Consequences: What Competition for Limited Resources Does to the Autism Community and Autism Families

Autism and Oughtisms
Autism and Oughtisms

What happens to a community of people facing the same challenges, forced to compete for limited resources (particularly government resources)? The effects I’ve seen at a local level – here in New Zealand – appear to be replicated overseas, according to what I’ve seen in debates and conflicts in the online communities.

There are various government provided supports (in terms of finances and services) that require you to prove your child’s autism is more severe than other children’s autism. Sometimes this is done in direct competition; a specifically limited number of packages of assistance are made available within the country, to the point that if your child qualifies for the support, there is one less assistance package available for another family. Other types of support are available to every child on the spectrum, but the level of support you receive, or how long you receive it for, depends on the severity of your child’s autism.

These schemes are set up in this way to respond to the reality that there are not unlimited funds and services available, and that to make those resources available to every child with autism, would dilute the usefulness of them to anyone since they would be spread too thin. So the government has had to come up with some way to respond to the different levels of need present within the autism spectrum; acknowledging that it is a spectrum where one person can be affected very differently from another. In order to achieve this understandable goal – getting scarce resources to those who need it the most – they’ve had to create categories and corresponding terminologies of severity. Parents must learn to understand and use those categories in order to understand and access the services on offer for their children.

The consequences of all this can be quite significant. I’m going to go through the ones I am aware of.

One of the most disturbing things I have heard time and time again about my son, from other parents of autistic children, is how lucky I am that his autism is so severe. This has always been said to me in discussions about the schooling options we have available to us; if his autism was less severe he wouldn’t have qualified for the level of support he has, he’d have been expected to take part in mainstream schooling with little or no help, as is true for many “less severely” affected autistic children. In a world where severity is the difference between lots or hardly any schooling support, it makes sense to say to someone like me, how lucky I am. Yet every single time someone says that to me, I get quietly angry. I’m lucky my child has life-long challenges? How dare they! I know why they say it but it still pits me against them emotionally.

It also makes me feel like I have to defend my child’s needs and severity to the other parent, or apologise that we get the help they don’t. I shouldn’t have to do that or feel that way, yet the system is set up in such a way that my child’s needs were very probably seen as trumping their child’s needs; the fact we got assistance may actually mean their child was less likely to have received the help they also desperately needed.

In this situation – them telling me I’m lucky, me defending and apologizing for the services we receive – we parents are pitted against each other, and the system stands there like some accepted monolith. The attacks and upset should be directed at the way the system is set up, but changing the system is a slow and overwhelming task; it’s much “easier” to accept its existence and rules, and turn our frustrations on each other.

The way we have these discussions – even the ability to have these discussions – shows we have internalized and maybe even accepted the categories of severity or functionality presented to us by the service providers. Just the constant use of their terminology, requires us to also think using the terminology; it inevitably starts to sink into how we understand our own and others’ autistic children.

In the process of filling out the endless forms to get these services and assistance from the government in the first place, I was often told to exaggerate my son’s challenges. This advice came not only from parents who had been through it all before, but also from the government employees who aided the application process (the forms are filled out by one arm of the government, then another arm evaluates it, and a third arm provides the service!). Sometimes the advice of exaggeration came in the form of “tricks of the trade”: Provide plenty of examples of the difficulties and don’t hint at his capabilities, use the right emphasis, etc. Other times the advice was to very literally exaggerate close to the point of dishonesty.

I don’t work that way; I spent nine years of my life studying law and philosophy (and then teaching the same), so to knowingly lie in such a situation goes against my well-argued, well-understood (and well-entrenched) principles, even if it would supposedly benefit my son. I very strongly hold to the view that if you think the system should be different, then you fight to change the system for everyone; you don’t lie and cheat in such a way that leaves the bad system in place for everyone else and even reinforces its continuance. I didn’t need to exaggerate my son’s condition to get the help he needed, but because it’s such widely known advice, I still have to deal with the fall-out of the advice: People presume that I must have exaggerated or known some special trick to get my son the help he receives. It’s as if the receiving of that assistance for my son is evidence of my immoral character.

Yet again, I am put in the position of defending myself and the help my son gets, against parents who didn’t get the help (presumably in part because they were too moral to help the application along by lying).

This effect of competition for limited resources starts before you even fill out your first form. It starts at the point of diagnosis. Your child’s challenges might be described and categorized in difficult ways if they are borderline autistic or have co-morbid conditions. The pediatricians and health professionals know that if you get the “right” diagnosis, you are more likely to get the government assistance your family and child desperately need. Some health professionals are so in-tune with these concerns and the level of need of their clients, that they have over time established reputations as the “go-to” person, to get an autism diagnosis which will allow you to get your child the help you want to get them, even if your child has some other challenges that don’t fully fit the diagnostic criteria, particularly according to other doctors who had declined the diagnosis of autism. (I have written before about such a doctor within the local autism community.)

These doctors are sometimes seen as heroes, particularly by the families who get financial assistance because of their diagnoses. They are just “working the system” to help out families. The problem being that an autistic child who gets their diagnosis from this person will then have their diagnosis doubted when other parents hear about who the diagnosis came from; even if their child is genuinely autistic. Because of the ongoing competition for resources – diagnosis is not the only point at which resources become available – these children can become targets of anger because they are diluting the limited pool of assistance.

Again, the doctors doing this – or even tempted to do this – should be arguing and fighting to change the system. They should not be reinforcing its unfairness and problems, by massaging truths and details so their clients can fit within it; leaving lesser “informed” families and families of future children, to continue to suffer their way through the unchanged unjust system.

I want to make it clear that I am not arguing these are the only reasons we might call others lucky for having more severe children, or argue over whose child is more severe, or use terminologies about severity of functionality, or get annoyed that certain people get help that we don’t. But it seems to me that the systems we operate within whilst competing for limited resources, go a significant way towards creating and furthering such competitive attitudes and unhelpful terminology.

One last important effect that I want to mention, that results from such competition for scarce resources, is what it does to our own views of our children and their views of themselves.

When we are forced to think about how severely our children are affected, and are “rewarded” with a share of the pie when we make our children appear significantly and severely affected, it necessarily impacts on how we in turn view our children. We are asked to talk and write about how bad their problems are, and a lot turns on how successfully we do that. We must focus of their problems, not their skills, in our applications for help. That makes sense, but it can make you start to see your child daily in terms of those severe challenges too. This doesn’t mean there should be a “what do you love about your child” section in such forms – there’s enough paperwork already thank you very much – but it does mean that its important to try to balance those necessarily negative focal points with celebrations and focusing on the positive in other areas of your parenting life.

Not only will our children be affected by how we as parents view them, they may also become directly aware of them being described over and over on endless forms as difficult and troubled children. We can try to protect them from this – fill out forms away from them and out of ear-reach if the details are being discussed (as they often are) – but that is not always possible. We also often underestimate what our autistic children can hear and understand, so we don’t always make the necessary effort to make sure they don’t get directly exposed to these views of who they are. Our children face enough problems without realising they are viewed and talked about in terms of their challenges and problems, not their skills and amazing selves. Self-esteem, confidence and a positive self-image, matter.

The competition for resources problem isn’t going away anytime soon, particularly for those of us who must rely on the publicly funded system to meet our children’s special needs. Whether the current system is set up in the best way to respond to those needs and allocate those resources, is a separate issue to the necessity of performing those tasks. At the least, I think it is extraordinarily important to be aware of how that competition impacts on our attitudes about our own and other autistic children, and of autism in general.