By Forty Two on Flickr

My son has high needs (as a fact, and as an education funding category). In order for him to do and be his best in a school environment, he needs access to costly resources and therapists. So what happens when the Special School environment – where he spent two years well-resourced and surrounded by experts – is no longer appropriate for his level of development? When he needs to be surrounded by peers able to communicate and socialize with him at a higher level than found in a Special School?

By shifting to our local mainstream school, we lost that expert access and those special resources, and I knew that was the trade-off. It was a hard decision. Even more so because the school he would now attend was a low decile one, with a reputation too for having more than its “fair share” of troubled children on its roll. It’s apparently known as a “magnet school,” because it appears to attract higher numbers of special students. My own son comes with a dedicated pool of funding, but many special kids with less severe issues are left to access the general pool of special needs funding that each school has to make the most of. This means the school’s personnel and funding is all the more stretched and stressed. Just to make things worse, the school had a less-than-stellar Education Review Office (ERO) report, and had just had the upheaval of a changed Principal. It looks like a recipe for disaster, doesn’t it.

But there is a factor that can help compensate for having access to less experts, and for less funding and general resources. A factor that is very hard to meaningfully access through the ERO reports. A factor too that can make the highest decile private school look like a poor alternative if it fails to get it right: The people; the Principal, and most especially, the teacher.

In this way, I am empowered because of my son’s special needs: I can expect and have the school allow me to meet with my son’s intended teachers before deciding where to send him, and to allow me to educate his future teachers year to year. When I chose his first Special School classroom – and yes I was explicitly given the choice of classrooms – I chose the one with the teacher who had the most energy, passion and interest in my son, and warmth towards me as his mother. We made the right choice, she was the best thing that could have happened in my son’s early education.

When it came to a teacher for his mainstream school, I was not given the explicit choice, but I was clearly told that there were a range of teachers to choose from and much time and thought had gone into choosing the right fit for my son, based on the experience and opinion of people who had already worked with my own son and who knew the teachers there well. Similarly, looking ahead to next year, the right teacher for my son is already a talking point among those with the power and influence to make the choice; within the school they recognize the importance of matching my son to the right teacher. This level of consideration and care is immensely reassuring, and sets my son up for success. It makes the most of what resources the school has, the most important resources, the people themselves.

I feel so close and so grateful to my son’s teachers, that each year I find myself hugging them in tearful gratitude. They have always gone above and beyond to try to understand my son and make the most of his strengths, while recognizing and working on his challenges. He is not the easiest student – he needs sameness, he questions authority with “why” a lot, he doesn’t always understand or is able to follow instructions, etc – but he does love learning and enjoys school, there is a lot of good material there for the right teacher to mold and encourage into successes (and not just academic successes).

So yes, it’s a low decile mainstream public school. On the surface, it ticks all the wrong boxes for my son. But what makes it work is the same thing that made his mid-decile public Special School work; it’s the thing that’s hard to measure and difficult to control; it’s the thing that makes the difference between a threatening and closed environment versus a safe and inclusive one:

He aha te mea nui o te ao?
He tangata. He tangata. He tangata.

What is the most important thing in the world?
It is people. It is people. It is people.

Example of assistive technology for communication. Picture by stephanie vacher, via Flickr.

Does the research actually support this miraculous outcry though, and even if it did, should we be getting our kids to put down that iPad and pick up that PECS box? This post is my first effort to answer that question.

First a brief look at some of the existing research. There is a study specifically looking at PECS (Picture Exchange Communication System) as compared to using the iPad to achieve the same ends. It is useful to compare iPads to the PECS system because PECS is a well established communication system for autistic children, with a good reputation. This 2012 study (Flores et al) was a small study, of only five children, but found that those children either improved or had no comparative improvement when using the iPad versus using PECS (ie, an overall positive outcome for iPad use).  Van der Meer, Kagohara, et al. (2012) only looked at four children, and at the iPod versus manual signs, with implications for the use of other assistive technologies. Again, it found positive outcomes for those children involved in the study. A recent systematic review of 15 studies on the use of such devices, also found a largely positive outcome.

A theme that comes through the research is that success using these devices is quite individualised; whether a child responds well to the use of a device is not predetermined by their diagnosis. Nevertheless, it appears to do no harm and potentially much benefit, to give it a go.

But what does “giving it a go” entail? The biggest hurdle for many is simply the cost. We are a two iPad family, but we didn’t pay for either (I won one, my husband got his through work). If we had to purchase an iPad specifically for my autistic son, I don’t know that we could have afforded it (or have chosen to do it). But for those families that can, and those families that have other general reasons to have an iPad in the family, it would seem to be worth a try. I do not think though that it is worth putting pressure on publicly funded services to supply an iPad (or similar device) to a family with an autistic child; the fact is there are still traditional and excellent alternatives available. Similarly (and even more so) I do not think there is strong enough reason to demand a family acquire such a device in order to help their autistic child. Ultimately, any therapists working with a family should be willing and able to adapt to what both the family can afford, and what the child responds best to; that individualism focus is itself what comes through the research.

Where other methods have tried and failed or had limited success, there would be a strong reason to try these new devices, and the sooner the better; early intervention is well documented to make a significant difference in an autistic child’s life.

There are those who seem to rebel against the use of this new technology merely because it is new technology. I have the same leaning; I do not like trying new things as a general rule, and I prefer to stick to what I know best, especially if it already works for me. I think, for people like me, it helps to remember that these technological aides are not about turning known and proven methods on their head, it is about making those known methods more accessible and building on their principles; extending rather than turning away from what works.

My own son had huge communication leaps using PECS. We still have his PECS box, full of laminated pictures, Velcroed backs, sentence strips, and category cards. If we’d had and used an iPad app instead, the primary difference I can imagine for us would have been time and convenience: Access to pictures without having to print them off and get them laminated by his therapist; not sitting on the carpet for hours cutting up and applying Velcro to the back of each picture and sorting them into usable categories; and not having to desperately sort through a box trying to find just the right picture while my son tried to contain his frustration.

Even the process of learning how to properly use PECS, could have been assisted by having an appropriate app; one that step-by-step helps and guides the parent through what to do and when to move onto the next learning level. As was, I had to read manuals and be carefully guided and instructed by a speech therapist when using manual PECS. I don’t think it would be wise or recommended to remove the role of the therapist – you still need someone to guide you to what to use for your child and how best to use it, and to help gauge successes and consider alternatives – but you can’t have a therapist with you all day everyday, whereas an iPad’s app might be able to help fill that gap.

We’ve tried my son on computer programs to assist his learning and communication before, and he struggled hugely with coordinating the mouse to do what he wanted on the screen. The iPad and similar touch devices bypass this common coordination issue, and frankly makes the whole experience more fun for all of those involved (the simple value of “fun” should not be underestimated). Swiping a finger and using a finger to move between and select options, is also highly intuitive.

In a practical sense though, how much sense does it make for a child to carry around an expensive (and sometimes large) device at all times, in order to communicate? The size issue to me is redundant here, because that PECS box and folder under my son’s bed was hardly easy to carry around, and the time required to tidy up and reorganize the pictures as we’d go through the day, was no small thing. As for the price of the device in the hands of a child, I think that’s a fair concern, but outweighed by the value of them having constant access to it, and can be offset by getting older or smaller models of devices that cost less.

Choosing the right apps is no small task, but again that is where having therapists who know the child and are familiar with the options, is always going to be valuable asset. On our iPad we have many apps that have been of no use to my son, and get removed the same day we download them. We also have apps that we’ve used to help our son deal with an issue he’s been facing or to extend his skills in a concerning area. I never just download such apps and leave him to it, I sit beside and help guide him through and discuss arising issues with him, just like I do any traditional forms of intervention (such as using social stories).

An iPad can’t replace all intervention types of course, but that’s not the claim for those who sing the virtues of their use. Occupational therapy, physiotherapy, social skills, as well as communication skills, can all be worked on without an iPad, but an iPad could also be used to enhance and reinforce that learning. It would seem a shame to not use one more option that might be the one that helps that child make a break-through in a skill or in their communication.

When I set out to write this post, I was not strongly in favour of the use of these devices, but the more research I do into their use and successes, it is hard to not become strongly pro their use, for those families that can afford them and are willing to try them. I think there is potential for abuse and misuses of iPads, but the same potential exists in all interventions improperly or ignorantly used (PECS for example has strict guides for what steps to go through and when, it is easy to go wrong and further frustrate and misteach a child using standard PECS without appropriate guidance). Perhaps that is where the danger lies: Perhaps there are too many options and too little guidance when it comes to using the iPad for communication purposes. In that case, it is just an argument for therapists to embrace and acknowledge the role and use of this technology, to help families avoid those pitfalls and to help them get the most out of it: To turn a potential problem, into a very real solution.

I also think therapists should actively encourage families to problem-solve their child’s challenges. In the first few years after an autism diagnosis, it makes sense for the role of therapists to be very heavy-handed, to help parents avoid common errors and to not throw their money away on untested and unproven interventions. But as the years go by the parents must be empowered and encouraged to think-through and find the solutions themselves; the presence and ability to use an iPad does – I believe – extend those options for a family.

My summary then: Research, personal experience, talking to other parents and teachers, and simply thinking through the issues (for what that’s worth), do lead me to see great potential benefits and few dis-benefits in iPad use, particularly as an assistive technology for communication. I can see issues with their use (such as cost, and poor selection and use of apps), but I think the key concerns can be addressed by appropriately supporting a family on how to best use an iPad in their child’s life. I think we need to acknowledge that families are going to try iPads anyway, and be willing to help them make the most of it, and acknowledge further that studies so far are quite positive about the potential benefits. As always, it is essential to take into account the individual child’s strengths and preferences.

The first time I encountered the “think and focus on the positive” approach to autism, was in my own son’s early intervention therapy forms. Every time we filled out a form about where he needed help, we also had to fill out the inevitable section about what was great about him, which I found immensely irritating. I had my hands full with my son on a minute-by-minute basis, and dealing with endless government and medical bureaucracy, yet I was expected to spend time recounting information that was never used in his therapies and which I already knew as his mother: Why my son was great, what he was great at.

Therapies were aimed at helping him overcome his deficits, that is the point of the interventions. All the feel-good stuff didn’t belong on government forms, it was a waste of my time and theirs, and rather belittling to me as his mother – the notion that I wouldn’t appreciate his awesomeness unless someone else made me write it down every time I sought help for his challenges. Figuring out his motivators where relevant for a therapy was always worked out as part of the therapy process anyway, not once did I ever see them utilize the sections of the forms where I had to say why I loved my son despite his autism.

This positive approach to autism – shifting focus from deficits to strengths – is most commonly seen in trying to fix damaging and ignorant public attitudes towards autism. In this particular realm it makes sense, as long as people don’t try to universalize such strengths to every person with autism; that is just as incorrect as the basis of existing negative attitudes. Along the same lines, the positivity-shift is also an approach often used in getting people to understand and treat autistic people as individuals, and not as merely an instance of a diagnosis. Again, this makes sense, autism is, after all, a diagnosis.

The problem is when people – including professionals – try to push this further into the very act and process of diagnosing and treating autism. A prime example is this blog post, by someone who professionally works with autistics and would like to see a strengths-based model at the clinical level. She gives examples of replacement terms in place of deficit-focused language. As I went through her list, the problems with a strength-based model became striking. By the end of the post, I’d shifted from being open-minded about the potential benefits, to being more firmly against such a shift.

First off, such a model is highly exclusionary. A model that looks for and focuses on strengths and gifts, excludes those who function at a lower level or don’t have those gifts. There are a large proportion of autistic individuals who are intellectually disabled and / or struggle daily without some off-setting “gift” from their autism. Any model that excludes the worst affected, is surely of limited use in a clinical context. A deficits based model will capture those across the spectrum, in the way that a strengths-based one will not.

Similarly, the model perpetuates incorrect stereotypes – such as that all autistic people carry savant skills or have high IQs. Claims like this are simply incorrect and have not been shown to be the case. Saying and acting as if it is, denies reality, and further frustrates and confuses desperate parents, and places high expectations on autistics that many cannot and will not be able to live up to. Surely it would make more sense to focus on the individual with autism as an individual, rather than creating yet more difficult and nuanced criteria that they must meet before they can be considered “truly” autistic..?

Furthermore, the point of a diagnosis is to identify where an individual requires help. Shifting to a strengths-based model seems to overlook this central function of diagnosis: If someone is doing just fine and exhibits a wide range of strengths rather than deficits, why does it make sense for governments and insurers to shell out millions to help them and their carers and families? We’re already in a battle to make these governing bodies appreciate the difficulties and be willing to help us address them.

You may reply that the point of such a model is to get a more rounded picture of the entire person. But since when has “capturing the entire person” been the point or function of a diagnosis? It’s meant to identify an aspect of the wider person, the aspect that needs assistance. If we start placing all the strengths and other aspects of a person into a  diagnosis, we turn a diagnosis into someone closer to an identity, which is not necessarily (and I would argue, not generally) healthy, helpful, or accurate. In fact it goes towards a notion that needs to be widely fought in my opinion: The notion that autism somehow defines the entire person (see a previous post of mine of the individuality of autistics).

There is a something further than concerns me here, which I think goes little appreciated too: When we redesign language (and criteria) to be more upbeat, positive, and strengths-based, I see the furthering of a very concerning attitude that is already prevalent in wider society; the attitude that mental conditions are not real conditions, they’re just bad personalities, poor choices, or excuses for everything from bad behaviour to poor parenting. If we say that autism is really quite “OK” (or whatever positive term you want), we would seem to be reinforcing the all-too-common view that it’s just a condition in the minds of un-accepting and attention-demanding parents, and of money-hungry psychiatrists who like inventing conditions so they and “Big Pharma” can get their pay check for helping children who have nothing particularly “wrong” with them.

I don’t need autism clinicians to have a positive view of autism, because their job is to help what my son struggles with, not to address his entire personality. They don’t need to know every nuance of what he’s good at, or why he is awesome, that’s my job at his mother, and I know those things so intimately and expansively that no list could ever hope to capture my son, and any list that sets out to do so will always fail.

When it comes to working with one-on-one therapists, it may seem important that they focus on the strengths and not just the deficits since they are dealing with an entire child. But every therapist who has ever worked with my son, has first dealt with him with me right there, and every single time I have seen evidence that they don’t look at him and see “autism,” they look at him and see a person, just like I do. They find things to laugh along with, they enjoy and revel in his triumphs, they are distraught when he is hurt or distressed; they are human, dealing with a human. No more do they than I need someone telling us how awesome this kid is and what he’s good at; we see it everyday. Those who don’t or choose not to, are unlikely to be made better people or better therapists because you changed a few words on a list. (After all, therapists are not the ill-informed and untrained public, with no personal interaction with “real life” autistic people, they know – or should know – that a diagnosis does not define an entire person.)

Do I think language matters? Yes. Do I think people should be more aware of the complexities and variety of autistic individuals? Yes. Do I think these ends are served by changing diagnostic lists and forcing already stressed and exhausted parents to fill out sections in every form about how great their child is? No, I do not. Nor do I think that the outcomes of changing language around autism to a strengths-based one, is always or necessarily helpful, accurate, or beneficial to the individuals affected.

I know I won’t have changed many minds with this post, and believe me when I say that I understand why, I really do (but go ahead and tell me in the comments anyway, that’s fine, I am open to having my own mind changed). I also know that the people promoting this strengths-based approach have their hearts in the right place. I’m just concerned that the down-sides of such an approach don’t get much consideration, and I wanted to put forward some of the very-real concerns. When we make a change for what is perceived to be the better – when we choose different words, different focuses, different attitudes – it makes sense to examine whether they really are a change for the better for the people most affected by the term at issue in the first place.

By Jake Bouma, via Flickr

At least some of those key benefits, are now demolished. In particular, the benefits around the clarity of who would now receive an autism diagnosis, and what precisely would be required for an autism diagnosis. Dr Allen Frances has described the two key flaws of the criteria in this clearly written article. I want to add my own concerns and analysis to what he has to say.

The wording of the DSM-5 appears to have committed the same impactful error that we saw in a previous edition when PDD-NOS was over-inflated by the replacement of the word “and” with the word “or” in the list of criteria (a detail that I learned through Grinker’s book “Unstrange Minds.”). That text error held sway from 1994 until revised in 2000. But what we’re seeing in the 2013 DSM-5 appears to be the complete absence of any “ors” or “ands” in the criterion guidelines for social communication and interactions deficits. In the words of Frances: “The really fatal flaw here is that no instructions are given as to whether one item, two items, or all three items must be present to make the diagnosis of Autism Spectrum Disorder.” (See his article for the official list of possible items.) This could (and is likely) to have a very real impact on the accuracy of diagnoses across different practices, and similarly then impact on the accuracy of researching those who have received a diagnosis.

The second “fatal flaw” is particularly interesting from the view of autism politics and autism pressure groups: Leading up to the DSM-5 there was significant concern about how the new criteria would affect services and supports for those who currently have an autism diagnosis, as well as how it would hurt those who already positively identify as autistic. Despite constant reassurance that numbers would not be drastically affected, and backing up those reassurances with studies that claimed the same, it appears that the DSM-5 drafters felt compelled to clarify the matter further by explicitly stating in the new criteria that those with a “well established DSM-IV diagnosis” should also receive the new autism diagnosis.

This means you potentially have a sub-type of autism, depending on how seriously you take the studies that actually found a significant discrepancy in those who once were considered autistic but wouldn’t have been under the new guidelines: If there really is a large difference, then doesn’t including them in the new diagnosis group, change the clarity and consistency of what autism is? Isn’t it now then a merge of DSM-IV and DSM-5, rather than the DSM-5 which was meant to be such a huge improvement on the DSM-IV? As I said, a sort of “sub-group” of those who may not have otherwise met the DSM-5 criteria? What then, does this do to research on autism that uses a diagnosis of autism under the DSM-5, would it perhaps make sense to always note that the person had the diagnosis only because it was established under DSM-IV, and if you do this, wouldn’t it make sense to always then determine too if they do actually meet the new DSM-5, for any potential research purposes? What’s the point of a new DSM that says the old DSM is still valid?

I’m sure some of those concerns would be dealt with by researchers that always first re-establish a diagnosis prior to getting involved in their research (I’m not a researcher, I only read the occasional paper and paper critique, so others would know better), but it seems to add an extra layer of confusion and perhaps a certain level of redundancy to the changes for what autism now means; the sort of uncertainty that was meant to be fixed by the DSM-5.

I also wonder what exactly is meant by “well established” in this context? Does that mean someone who has had their diagnosis for two years, ten years, does it include those who had a borderline diagnosis, or is that not considered “well established”?

Frances specifically voices the concern that the wording allows clinicians to simply choose then whether to use the DSM-IV or DSM-5. At first I found that a bit of an extreme interpretation of the words, but the more I thought about it, the more it seemed a perfectly defensible action in the mind of a hypothetical clinician: If the DSM-IV criteria counts as autism under the DSM-5 for existing patients (which is the more obvious reading), then what sense would it make to deny that flexibility to new patients? Surely it would be arbitrary to do so? (And again, this may turn on how one even reads “well established,” could it perhaps apply to a new patient if the condition itself is well established under the DSM-IV criteria despite not previously being diagnosed?)

You may know the answers to these extra questions I raise; I am just a parent with an intense interest in the diagnostic criteria history of autism. If you know the answers, please share them; I want to understand. Regardless, it seems to me that the much-needed and much-touted clarity of the DSM-5 over the DSM-IV criteria for autism, has been undercut at the outset. Disappointing to say the least, the words “disastrous” or “failure” might be relevantly applied too.

By Jenny Downing via Flickr

It seems to me that there are three main attitudes to how someone comes into autism, in terms of “fault:” (1) A criminal cause, where someone has acted recklessly or negligently to cause autism; (2) an accident, where it happened by some injury or harm, but there is no meaningful person to blame, and (3) no fault is relevant, autism is just part of a life that some people come to have (at birth or later) or don’t, but no one and no thing is to “blame” in any sense of that term.

If someone believes autism (or a particular incident of autism) is caused by genetics, they may find their attitudes falling into any of these three categories. Something like vaccines as a cause, would fall into any of the three categories too, depending on the malice you may see in vaccine producers. The important point for the analysis I’m engaging in here, is the person’s resultant attitude towards fault or blame: Is there someone who has caused – and should be held responsible for – a disabling change to a person (in this instance, autism)?

So if those are the potential paths into autism, the relevant potential paths out, are binary: (1) It can be cured, and (2) it can’t be cured (both of course complicated by what counts as a “cure” for a condition defined by symptoms). Layer that with the “shoulds”: (1) It should be cured, (2) it shouldn’t be cured. The shoulds are often going to be formed in relation to how severely the individual person is affected: Someone intensely disabled by autism is almost always going to be seen as a “should be cured,” someone who can function adequately most days, is going to attract different attitudes. The “shoulds” and the “coulds” have to be treated separately of course, and you can see how views of medical reality (for example, it can’t be cured), can impact on attitudes towards the shoulds (“it can’t be cured… and therefore I am inclined to believe we must come to see it as something that shouldn’t be cured, as a measure of acceptance and humanity.”)

On this simple mapping, you can see that the the most frustrated and angry people in the autism world, from the parenting perspective in particular, are those who believe autism has a criminal cause, should be cured, and can’t be cured. Those who will be most angry from a self-advocacy point of view against that group of people, will be those who see it as a no-fault cause, that shouldn’t and can’t be cured (or an even angrier group, would be those who believe it can but shouldn’t be “cured” depending on your meaning of cure, for example if you believe any supposed cure is just “passing”).

When people see autism in these different lights, they aren’t really arguing about the same event anymore; they are arguing about “autism,” but because we’re still learning about what actually causes and can help autistic people, there is a huge amount of very-understandable variance in accompanying attitudes towards the condition. If we all agreed on its cause and the state of a cure, most of the arguments would fall into the whether we should or shouldn’t attempt a cure in light of that knowledge, and those attitudes would be informed by what the cure entails amongst other numerous unknowns, as well as the severity of the affected individual, but as least we’d be that much closer to all arguing about the same thing.

That’s just the first part of what I want to say though; I want to make a point about the love parents have for their children and why the above attitude differences are always relevant, and yet get ignored in judging those parents.

If a parent believes autism was criminally thrust upon their child, and can be cured (and therefore, often as natural concurrence, should be cured), then it makes sense that they do not embrace autism or see their child as “one” with autism: The child is seen as hidden by or stolen by autism, not because they hate the child, but because the autism itself is seen as something criminal and removable. To attack the parent simply for hating autism, and to claim this means they hate their child, is to completely ignore their entirely different conception of how autism has arisen and what can be done about it. They may be wrong about autism – for example, it isn’t really caused by a criminal act, it isn’t removable – but that is a different claim than they hate their child. Their actual child – the complete child if you will – was the one taken away, they are just trying to get that child back; they love their child regardless and in all states / conditions, but because they don’t see autism as their child, there is no contradiction in loving the child and hating autism.

In fact, I am yet to meet a single parent who doesn’t love their autistic child, regardless of their views towards autism itself; as parents we are hard-wired to adore our kids no matter what, and that includes fighting for their best interests. It’s just that what is in their “best interests,” very often depends on your views of cause and cure.

There are other reasons someone might hate autism but not the person with autism, particularly around the intensity of the symptoms impact on daily life and living the life the individual wants, ie in the “shoulds” category of attitudes. If the affected individual is relatively happy, self-identified with their autism, and is not a danger to themself and others, then even if autism is seen by them as caused by something bad or curable, it is entirely consistent for them to not seek out any such cure. Again, it’s not just about “autism,” it’s about all these whys and realities supporting those views, that we frequently do not confront or acknowledge in others.

What all this explains for me, is that the autism wars I see every single day are perfectly predictable and understandable. Our communities are particularly volatile, and splinter-off and fight amongst ourselves regularly, as you’d expect when we’re calling different things the same word and all trying to dominate how the public and our peers see it too. It makes sense to me that so often we end up saying “but that’s not even autism,” because we can’t point at a single biological marker or facial feature (or whatever), to at least ground what we’re talking about, let alone know the cause for each individual affected.

Does this mean all disagreement would magically disappear if we could be more precise about the phenomenon and if it could be cured? No, but I do believe the disagreements would be easier to confront and understand. Currently even figuring out what someone believes and why is hard enough, and views of an individual can change one year to the next, moving between “extremes” as knowledge and experiences also change.

Accordingly, my own views and attitudes towards autism have shifted on all these axes: I came to see my son’s autism as more likely to be a result of genetic than post-birth environmental insults (causal); I don’t think autism can be “cured” per se, but I do think interventions can make a significant difference for some children (affecting my views on cure); and my son’s autism symptoms greatly improved (affecting my shoulds, in tandem with my view that autism can’t be “cured” anyway so we need to be more accepting regardless).

If I believed my son’s autism was caused by something someone else did to him maliciously, I’d be joining protest-lines to stop it happening to others and to make the perpetrators pay for the cure (or the finding of a cure). I’d be considered an extremist only by those who didn’t believe those facts about autism, if what I believed was fact, I’d be considered a humanitarian seeking justice for criminal wrongs. At some point people are continuing to hold their views despite science and evidence to the contrary, and at that point anger and frustration from other quarters becomes justified, but it is still important to understand where their attitudes towards autism itself, are coming from, and focus any attacks accordingly. (Which is to say, I don’t think it is fair or accurate to declare these parents as un-accepting hateful parents, which I see far too often.)

I don’t think my analysis is perfect, and I don’t know if it will make sense or help anyone else. But it does help me to understand myself and others better, and that’s why I’m sharing it; maybe it will help someone else too. I intend to return to the analysis in a year or so and see if my views on it – and on autism – have changed. If they discover what caused my son’s autism and how to change it, I’ll let you know. For now, my attitudes quite rightly reflect my understanding of not just autism itself, but of the autism my own son lives with, and as a parent, that makes sense.

By Velvet Android, via Flickr

Oh how wrong I was.

It didn’t take long for radio, television, and online news media, to pick up the growing outrage at how the Government has chosen to meet these obligations. At first I was a tad bewildered at the response; why was everyone so upset, surely this was a step in the right direction? The more I researched, the more I came to understand that it was more like a wriggle of a toe in the right direction, with a blockade to prevent any further advances. I’m going to help you understand why, because it took me a while to get my head around all of this too.

First, and not surprisingly to anyone with previous knowledge of this case, the Government has read-down the Court’s decision to its smallest subset of applicable families and disabled people who can receive the support. (To briefly clarify, the support at issue is when non-family members are paid for care of the disabled, but family members were barred from receiving the payment for providing the same care, details are in my original post if you need them). That small predictable subset, is that the relevant disabled individual must be an adult; caring for disabled children who are not adults, are excluded. But it doesn’t stop there, of course…

The number of people who can come in under the scheme is limited to the 1600 who have “high or very high needs.” This is a tiny proportion of the disabled population in New Zealand. The payments are also blocked for spouses or partner’s of the disabled person. But it doesn’t stop there…

The payments they are entitled to receive when looking after their disabled adult children, is equal to the minimum wage. Which is to say, the family members will be receiving about half of what non-family members get paid for the same work.

So far we have limited numbers who can apply, limited people who can receive it, and half the pay if they do qualify. (And god only knows how many will ever access the funds depending on the bureaucracy built around receiving payments, I understand there are already serious concerns in this area.)

But it’s not finished with you yet, and here is where it gets dodgy.

The legislation granting this payment scheme was passed under urgency, without going through the full process of public consultation. It should already be obvious why the public might have liked to be consulted on the specific parameters and propositions at issue. It was dealt with under urgency as part of a set of Budget relevant Bills, but it doesn’t take effect until October 1st, so there should have been ample time to go through the necessary steps. As the Labour Party’s Annette King states: “Why is it being put through with such haste? It does not come into effect until October 2013 – can they count how many months away that is? Could it not have gone to a select committee for a while?“

However the devil is in the detail, and the detail here is nasty: The legislation also blocks any future actions against the Government for not meeting their obligation under the Bill of Rights Act, in relation to “a provision of the Bill, or by a family care policy.” It expressly leaves the Bill Of Rights Act toothless against the issues in the Bill, by stating that Courts and Commissions cannot take any cases or complaints about any such discrimination, and for those cases already under consideration on the issue, the most the Court or Commission can do is declare that the policy in question is inconsistent with the Bill of Rights Act… and that’s it. Really, that’s it. (For what it’s worth, as I understand it, that does not apply to the specific case that lead to the government introducing the Bill in the first place.)

(Note, this is my understanding of the operation of the Bill from both reading commentaries and from reading the Bill itself, if you think my understanding requires refining or clarifying, please do help me out here.)

The Attorney-General has spoken out against it, saying it breaches the Bill of Rights Act. The Labour Party, The Greens and New Zealand First have all publicly spoken out against it too. A powerful quote from Green Party MP Catherine Delahunty, is worth sharing:

“This is vindictive, unfair and what’s more, it is setting up a new level of complexity – and these people have been though enough. Sometimes, Mr Chair, people’s hopes are broken by life and sometimes by legislation. And this is one of these times.”

I want to end with a quote from my own post on the consultation process that lead up to this Bill, because what has happened was foreseeable at that point: “I’m not convinced that the Government has appreciated the gravity of what they were doing wrong and how many lives it was ruining, neither am I convinced that their consultation will churn out a better future for these individuals and their families. I very much would like to be wrong.”

I wasn’t, and the outcome was so much worse than I thought it would be.

****

Relevant news stories / press releases / posts:

• Law Discriminates Against Disabled Adults and Family (Press Release, New Zealand First Party, May 17th 2013, scoop.co.nz)
• Labour criticizes “shonky” process to pass carers’ bill (Radio New Zealand News, May 17th 2013)
• Not for profits suspicious of government decision to pay family carers (wecare.org.nz, May 17th 2013)
• Budget 2013: Family caregivers will get minimum wage (May 17th 2013, NZ Herald)
• New Zealand Public Health and Disability Amendment Bill (No 2).
• Making sense of the New Zealand Court of Appeal decision on paying parents as carers (my post, May 15th 2012)
• The consultation on paying family carers to provide disability support; why I am not impressed (my post, Oct 12th 2012)

Bu Gib3102, via Flickr

I re-read the comment, and my general feeling of upset turns to annoyance and anger. I share the comment in a private group of friends, we all agree it’s best to leave hate speech where it belongs; unpublished and in the bin.

A month goes by. May 2013, I find out about a man called Colin Brewer. This man  is an elected Councillor, who I am pleased to say does not reside in my country. Here again, an argument that society would be better off without disabled children, and that they should be killed as babies because of their cost to society. He compares the cost of caring for these humans as equivalent – and better spent – on running 10 public toilets. He says people are transient, that he is thinking of the bigger picture: planning, environmental issues and landscapes.

He talks about the many private supporters he has of his view, and I am reminded of my visitor from April. Hate speech and hate speakers don’t stay in the bin. They don’t go away. They vote for people like Mr Brewer. So I want to say something, and I want this to be very clear.

Colin and my commenter “Joe,” are interesting in this remarkable regard: They think society would be better off without disabled people who had no choice in their challenges, but they think people like themselves – who encourage violence and hatred against the disabled – are the sort of people we should want to keep around. That people who choose to promote violence and hate, are more valued than their intended victims, who have not made any such choice. What an interesting society they promote, not a place I would want to be, but apparently it’s their ideal. The oddity doesn’t stop there.

Colin and Joe think money is more important than caring for humans, yet I find it hard to imagine what money would be better spent on. Toilets, apparently. Because toilets and landscaping are the public sector’s key roles. I was under the mistaken view that matters like health and life were higher up the agenda; someone better take back my Philosophy and my Law degrees, I appear to have been erroneously educated on both ethics and government.

But the concern, we hear Colin and Joe say, is that it’s other people’s money you see. But I am then led to wonder, why they wouldn’t advocate changing government spending priorities or taxation or support services on offer; how is it they short-cut to killing the disabled? That step is hard to fathom; why is killing people an easier and more sensible solution than confronting and changing public policy?

Luckily neither Joe nor Colin will ever be in an accident that affects their bodies or minds, nor will they ever grow old, or have any relatives who also enter the world of disability (what a lovely predetermined world they live in). They are perfect human beings, unflawed, perfectly able-bodied and able-minded (though the able-minded thing is starting to look questionable, wouldn’t you say?)

You may be familiar with my disdain for the argument that the value of the disabled’s existence should or could rest of what they can do for the rest of society. I call this objectifying them, which is just my way of saying people are not a means to an end, they are an end in them-self. They are individuals, with a right to life, that is not up-held or negated by virtue of what they can or can’t do for anyone else. We do not have to justify our existence in reference to others.

This ignoring of individualism and individual rights, is behind the Colins and Joes of this world; they live in societies that have flourished on individualism and a system of rights, but they have a modified version of precisely which individuals should be entitled to even the most basic of rights. (How convenient too, that they fit into their category of those who get to have the right to life.) Their arguments to sustain those views are deeply flawed and contradictory.

Luckily for them, I and many others do value and understand the meaning and importance of choice and individual rights. And I do think that society has to “accommodate” even those who incite violence. I would prefer that they were accommodated in prison – inciting violence and inciting suicide are crimes after all – but I would not encourage that we physically attack or kill poor Colin and Joe. No, because I value life. I think that life matters, and I acknowledge that frailty of humans and how close we all are to disability anyway. I acknowledge the fine and shifting lines between who is disabled and who is not. And some part of me even pities these men, that they don’t realize how absurd and ill-informed they are.

The world would not be better off without my son, dear Joe and Colin. The fact that he’s turned out to be an amazing human being with a rather bright future if he continues of his trajectory – in fact, that he looks to be smarter than the average child his age and may yet turn out to have savant skills – is by-the-by. He could be that fictional drooling violent child Joe describes, and he’d still be worth more to me and society that those who spew forth and encourage such utter rubbish as these grown men do.

Just who would society, and I, and my son, be better off without?

By karmaOWL

Autism, as it’s currently defined, is a cluster of symptoms. Some causes of autism are known, many are not. Diagnosis is symptom based though, and I lack the number and intensity of symptoms to meet the diagnosis. I am not autistic. But…

Water scratches my eyes. The sensation of water running over my eyeballs is painful and distressing. In the shower I put a lot of effort into avoiding the water falling anywhere near my face, if I get water in my eyes the pain will force me out of the shower in desperate search of something to remove it. I can handle water – even heavily chlorinated water – on my eyes, if they are fully immersed before I open them, but water running over them is horrible.

I thought everyone felt this way, it never occurred to me until I was an adult that this might be unusual. I thought everyone else was just braver than me and better at hiding the pain. The ads and movies where people stood in showers with water running over their face always made me cringe and feel uncomfortable.

So when my autistic son complained of it hurting when water got in his eyes, and panics around water on his face because it might get in his eyes, I understood and I empathized and sympathised. I get it. I’m not autistic, but…

I have debilitating anxiety at times, at its worst it forms into a panic attack. Growing up I didn’t know it was a panic attack, I didn’t know what to call it. I thought I was just me being more fearful than other people and that I needed to stop being so “precious.” Nights of nerve-shattering dread and not even knowing what I was afraid of. Terror so forceful that I felt folded in on myself, somehow unconnected and overly-connected to everything around me. As an adult I learnt calming techniques through the experiences, in particular I learnt that seeking intense pressure from someone or something, across my entire body, helped me to calm. The more squashed I was – the more unable to breathe even – the calmer and more even my breathing and heartbeat got, until I felt in control again. I learnt other calming techniques too, relaxation methods that also help.

So Temple Grandin’s squeeze machine for the purposes of calming an anxious body and mind, makes intimate sense to me, as does my own son’s calming response when we pressurize his joints (shoulders and hips especially). So I get and understand that. I’m not autistic, but…

There have been times in my life where I was so obsessed with repetitive actions that they disturbed my daily life and would get me in trouble. I felt compelled to do certain actions over and over, even though I knew they served no function other than to feed an endless loop; doing them didn’t calm me, but not doing them did upset me. I had routines that had to performed in certain orders, I even made up rhymes to say to myself to keep the order right. If the routine went wrong I couldn’t focus on anything else until it was corrected. These behaviours were at their worst as an anxious teenager. As an adult I am more aware of these proclivities and that they emerge when I’m under stress, I’m much better at managing them with sensible strategies (like using meticulous lists, and talking things through with my husband), so they no longer negatively impact my life.

My son too has repetitive and obsessive behaviours, which I try to help him find ways to manage so they don’t negatively impact his life, ways that reflect the meaning and function of the behaviours in his life which are different from the function of my own. I am not autistic, but… (last one!)

I feel like I’m faking this socializing thing. I feel like my childhood was made up of fluked friendships. I was always suitably surprised when I ended up with a best friend, and I always doubted that I deserved it because I wasn’t sure what I’d done to get one in the first place. I even had one best friend who ended up in tears, pleading with me, asking me why I couldn’t just see that we were friends, that I didn’t have to act or feel like I didn’t deserve her. Inevitably all my friendships would fall apart for one reason or another, I found it hard to maintain friendships, they felt un-natural even though I enjoyed having people to talk to and be around. It was like I knew what to do in theory, but the practice never turned out the way I thought it was meant to.

These days, as an adult, I actively and very consciously work to build and maintain friendships. It is still hard, but I do enjoy the encounters that come from friendship, and I feel better equipped to do and say the right things. I am driven particularly by the fact that it is in my son’s best interests that I create friendships with other parents with children. I also have a much better understanding now of how important friendships – and not just acquaintances – are to the work environment.

So I see my son struggling to make and maintain friendships. I see him wondering how to make it work, and wanting it to work, but sometimes just preferring his own company in a way that very few children his age do. He has it much harder than I did, there is no doubt of that at all. But I see traces of myself in his concerns and challenges. In this. In all of these things. He is, after all, my son. Born from my body, there is no closer connection between two humans.

So when someone – some stranger on the internet, and these strangers run numerous highly vocal and popular Facebook sites and blogs – when these strangers tell me I can’t truly know my son like they can, because they have autism and I don’t… When they tell me I can’t understand his challenges because I don’t have a diagnosis… When they tell me I am “neurotypical“…

When they tell me I am “privileged…“

When they say my voice is less important than theirs and they can speak for my son better than I can..? Than the woman who birthed him, raised him, has spent every day of his life watching and learning about and loving him?

They are wrong. And I shouldn’t have to say it, because they should never assume to know someone else’s neurology or life experiences or life challenges. I have tried, in many posts (such as this) to explain when neurology is key to an argument, and when it is not. Because sometimes it matters, and sometimes it just doesn’t.

I am not autistic.

But neither am I neurotypical.

The claim that autism is best thought of as difference, has to have this sort of strong meaning behind it to be meaningful at all. If all people meant was that we should call autism difference because autistic people are in some senses different, then the statement is trite and not in any way combating existing paradigms or attitudes (of course autism is a “difference,” no one would deny such a claim). No, for the statement to have any power or purpose, it has to be juxtaposed with the notion that there is otherwise something essentially negative or intrinsically disabling about autism; that it is a difference instead of being seen as *insert current attitude that you want to challenge and change* (ie, disability).

As someone who loves an autistic person (someone who is my very own flesh and blood), I am sympathetic to the aim of making autism appear more friendly, familiar, less frightening or alarming. I want people to see my son as just another fascinating and fantastic individual. But I do not like the rhetoric of simply recasting autism as a difference in the way I keep encountering that claim. The same part of me that wants my son to be accepted (the parenting part), also needs people to continue to think of it as a disability and not more-so a difference, and I feel that I need to say why, because I don’t think the reasons are well understood or often thought about by those who want the rhetoric to change. All the reasons I am going to go through come from the experience of parenting an autistic child (or, if you prefer, from parenting my autistic child, I do not presume to speak for any other parent).

I’m only going to go through three reasons for why I feel uncomfortable and dissatisfied with the “difference” rhetoric, the reasons that I think go underappreciated the most. There are plenty of other reasons that most people will already be familiar with and hardly need recapping (such as the harsh reality of the worst autism has to offer).

Reason number one: Autism is real. As a parent with an autistic child, I could not possibly enumerate the number the times I have had to confront and argue against the notion that autism is not a real condition. The arguments take these common forms: autism is simply an excuse for rudeness; or a made-up condition for overly paranoid and anxious parents; or a parent’s excuse for a badly behaved undisciplined child; or a parent’s way to throw people off the fact that their child’s problems are a pure product of abuse. So here’s the thing then: If you tell the already-doubting public that autism is just “difference,” you play into existing perceptions that it’s not a real or a serious condition; you reinforce for these people the idea that there is nothing unusual or particular about autism, it’s just the normal and predictable outcome of bad parenting, parental abuse, or a rude person’s decision to act like that (etc).

Oh sure, if you had a spare ten minutes of their uninterrupted attention, you might be able to make yourself better understood about how you do think it’s real, it’s just not as “bad” as people think it is. But the fact is the message is predominantly thrown around like a happy-clappy slogan, and to people who already think the worst of what autism “really” is, you’re not helping them to confront their ignorance or prejudices, you are more likely to be reinforcing them.

Reason one doesn’t matter to you, because you think the message won’t be misinterpreted or you for some reason don’t think that part of the public is worth targeting with the message of difference, OK. How about reason two then, which is closely related to reason one: The people who do think autism is a real condition, but only when it is severe enough to be obvious to anyone who meets the child for even ten minutes, and believe the rest of the growing number of autistics is mass misdiagnosis serving the desires of parents who want to jump on the trendy autism diagnosis wagon.

I wish these people were the joke they sound like, but they’re not. Their numbers are even higher than those who think autism isn’t a real condition at all (and those numbers are frightening enough). These are the people who conspiratorially whisper to me how clearly my own son has autism, but so many of the children they meet with the diagnosis don’t have it. Some of them don’t bother whispering; they shout it in blog form or vomit it all over any half-related comment discussion. Just a few days ago I read a blog post by parents lamenting the fact that so many parents these days seek out an autism diagnosis just because their child is different. That’s right, because their child is different, as in, talks a bit slower than other kids, is a bit eccentric, or plays with toys in an unusal manner. The particular blog post I’m referring to – which was not a stand-alone view by any means – proudly and loudly voiced the view that parents should just be more accepting of the differences among children, instead of rushing to label them with “autism.”

Let’s ignore the ignorance here; let’s ignore how hard it is to get an autism diagnosis, let’s ignore the strongly evidenced under-diagnosis going on, and let’s ignore the number of parents who refuse to seek or get a diagnosis confirmed even when those in the know plead with them to do it for the child’s own good. Let’s ignore all that, because my point is this: When you tell these people that hey they’re right, autism really is just difference, they too are reinforced in their hurtful views that parents of (comparatively mild) autistic kids just need to be more accepting of their children and stop labeling them with the latest trendy DSM output.

My mistake, you didn’t mean for those people to receive and misunderstand the “autism is difference” message either. Of course you didn’t. So let’s ignore them too, and go to reason number three.

Number three is services. As parents of autistic kids, we spend ridiculous sums of money and time pursuing a small pool of government funds and specialists, so our children have the best shot at an independent future. We fight to access what is supposedly ours by right. But accessing this pool of funds requires our children’s challenges to be seen as something negative and serious. If it’s just “difference,” then why bother pumping limited resources into helping them to “change;” parents should just accept their child, right? These children don’t need speech therapists, occupational therapists, physiotherapists, they just need acceptance and love. Hey, I was all accepting and loving of my non-toilet-trained, violent, self-harming young son, guess what, it didn’t improve his life. My acceptance and love of him was a constant, but what made the difference was all the therapists we were only able to access because his problems were seen as serious and negative. The very fact that I can sit around and read and debate about attitudes towards autism, is because my son “got better,” his autistic symptoms got so much better through therapies and interventions that I have the luxury to now wax lyrical about how it’s really just difference…

And there’s the rub. Because you know I do believe autism is best thought of as difference. I want the world and my friends and family to understand that my son is just another human being who operates a bit differently in the world than they are used to. But as long as I keep coming against so many people who (1) think autism is a fake condition, (2) that parents who get an autism diagnosis for non-severe kids are just non-accepting of their children, and (3) that autistic children (and adults) need a change in attitude rather than professional help to make their own lives easier (and believe me far too many people in government ministries that control these sorts of resources do not understand the condition or its challenges), then I’m not going to go around shouting slogans about how autism is just difference. (Um, except that time I did it on Facebook on Autism Awareness Day, but even I make errors of judgment sometimes, I know, shocker.)

Those who have damaging, dangerous and hateful views of autistics, worry me a heck of a lot more, than gently shaping the minds and attitudes of those who already understand the intricacies of the autism debates. In this messy political autism world of ours we can debate terminology and argue about “privilege” and whether to use the phrase “special needs,” and “normal,” and “inspiration porn,” and whether the kid hitting his head into the concrete ground “is autistic” or “has autism.” The facts are my son has a disability called autism, he is not “just different,” he is the most amazing person I have ever had the pleasure of knowing (he would shock you with his brilliance and insights, this kid is incredible), but he has a disability, a real good-to-god disability, and if that statement offends or upsets you, you should check your own attitudes towards the disabled, because in my books disability doesn’t make him any less of a human being. It’s fact, not a judgment; check your own prejudices before you tell me that you don’t like my words.

Or whatever.

My point? I don’t like the “autism is just difference” message, and I want to help people understand why. Keep using it if you like, but understand why I and others might not jump on that band-wagon, and try to think about our reasons for not doing so before you attack us for being closed-minded. If I have failed to help you to understand such reasons, at least I did it in spectacular fashion

The post is finished, you can stop reading now, unless you wish to comment. Here’s the thing dear readers, recently I have had four autism blogging friends tell me or the world that they are afraid to speak their minds because autism politics have become so hateful and personal. The point and value of dialogue and reaching mutual understanding has been sacrificed to a loud obnoxious vitriolic personal bashing of anyone who dares to use the wrong words or to speak what they have experienced (their truths).

I too have been censoring myself, because to speak honestly these days is to offer your sanity and spare hours to strangers who would sooner launch personal attacks than deal with the arguments at hand.

So know this; my blog is not your platform to attack your mythical category of “neurotypical” parents (I am nowhere near “neurotypical” mind you, but that will be a blog post in the near future). And if you cannot understand what I have said, you do not have license to pretend I said something completely different and then attack me for that. To save me from such time-sucking counter-ramblings, only moderated comments will be let through on this post. That means you get to disagree with me, if you do it politely and on topic. If you can’t manage that, this is not the blog for you, go hate me elsewhere.

By MSH*

In this post I present a range of news stories from recent years, which illustrate the following concerning trends:

• The intellectually disabled in facilities, are too-often treated like animals or prisoners;
• Their and their families’ complaints are often ignored, or dismissed without adequate investigation, until (and sometimes even after) it is too late;
• Carers are frequently untrained or significantly under-trained;
• Carers and offenders frequently deny or down-play the incidents, even in the face of evidence from multiple sources over multiple incidents;
• The abuses are ultimately “State-funded,” with lack of responsibility or accountability on behalf of the State Ministries in charge of that funding.

What do we do about this? We start by raising awareness, because these things are going on behind closed doors, to people who are often non-verbal or very verbally challenged. We demand that offending carers, institutions and Ministries are held criminally accountable. We recognise that this ill-treatment and the responses to the ill-treatment, reflect wider societal attitudes that abuse of the disabled is somehow understandable or acceptable, that the disabled are in someway “lesser” human beings that deserve or can expect maltreatment, even under professional care.

Writing this post, and collecting these stories, is my small effort towards raising awareness about these patterns of abuse and dangerous attitudes.

Here are just seven stories from across New Zealand, and my summaries of key points and important quotes. Most of the stories concern people with autism, as that is the disability I have been most likely to read about over the years and is present in the stories I most easily recall. Many of the patients have other co-occuring intellectual disabilities. (Keep in mind the number of other intellectually disabled individuals whose stories I haven’t encountered yet, to give you a feel for why this will just be the tip of the iceberg of abuse in our facilities and by our State-funded carers):

“Boy left to eat grass at horror home.” (May 5th, 2013, Taranaki Daily News.) Victims: multiple victims of many incidents of both abuse and neglect. Facility: Parklands, in Pukekawa. “Ministry audit reports, obtained exclusively by the Sunday Star-Times, say the facility harked back to institutions of the 1950s.” Long history of documented abuses. People who ran the service deny the truth of the complaints. Staff were untrained, and in charge of 19 people. Families had suspicions, but were always reassured by the staff that the complaints and concerns were false. “Despite the allegations of abuse, some of which were substantiated by ministry staff, the couple are not facing criminal charges.” Critique within the story: “You couldn’t do it to an animal but it’s OK to do it to the intellectually disabled.”Includes a call for the Ministry to be held responsible too.

“Mum: Why did my son die?” (Nov 18th, 2012, NZ Herald). Victim: Otto, 21 year old autistic man died in a house fire under the care of a carer. Facility: A house in Glendene, Auckland (not his home). “On the night of Otto’s death, police told his mother his body had been found in a locked room inside the locked house. She said she was also informed the house caught fire while the caregiver was out buying food.”

“Carer of disabled teen denies assault.” (Oct 30th, 2012, Nelson Mail.) Victim: Sixteen year old boy with various intellectual disabilities, including Down syndrome and autism. Facility: Purpose-built Exeter St property, Nelson. The boy lived under the care of highly trained carers. His family raised their concerns, the individual accused of the actions denies the claims, despite multiple witness accounts supporting the occurrence of abuses. Official records of the incidents had “disappeared” from the files. Claims against them include inappropriate restraint techniques and violence: “That a Nelson woman repeatedly assaulted a severely intellectually disabled teenaged boy, including punching and kicking him, dragging him by his hair, and holding him against a wall by his throat.”

“Facility criticised over drowning of autistic boy.” (Jul 25th, 2012, NZ Herald) Victim: Julian Stacey. Facility: Run by Spectrum Care, Auckland. Eleven year old Julian, who had autism, escaped from a carer facility, and drowned. Staff on duty at the time were inexperienced. There was a history of successful escapes by the child. (See my extended post on the details and (lack of) consequences.)

“Autistic patient locked in room.” (Apr 28th, 2012, Stuff.co.nz.) Victim: Ashley Peacock. Facility: Tawhirimatea, Porirua. Thirty-three year old man with autism and various other mental health concerns and intellectual disabilities, who thinks he is in prison and can’t understand why. Suffering long-term seclusion, and very poor living conditions: “It is devoid of any furnishings. There was a mattress on the floor, no toilet, no access to fresh air, minimal sunlight.“

“Home criticised after autistic resident harmed.” (Feb 13th, 2012, The Press) Victim: Female, with autism, epilepsy, and intellectual disability. Facility: Mary Moodie Family Trust facility, Christchurch. Dragged across floor by legs and arms, causing her physical harm. Other victims also identified, 14 residents at the facility in total. Under-trained workers. Family was not notified of the key incident.

“My brother deserves better.” (Jun 21st, 2008, NZ Herald.) Victim: Twenty-four year old Jonathan, an autistic man, in care since he was 14. Facility: House run by Timata Hou organisation, Auckland. “What’s disturbing is how to reconcile that this service is sanctioned by both the Ministry of Health and the Family Court. If this is the standard of autism care in New Zealand, then it appears we haven’t advanced much from the days of locking people in the asylum.” And: ” Dr Hickey is extremely critical of the state of autism care in New Zealand, saying it’s 20 years behind the US and Britain and about 10 years behind Australia.” Jonathan is regularly restrained, both by physical means and by heavy use of medication (leaving him “catatonic” at times). “Jonathan has fewer rights than someone in prison.” The Ministry of Health funds this substandard care, but refuses to fund the family to supply the care with support themselves, a policy which is ironically intended to protect individuals from poor-quality service. “At present there is only a facade behind which are services that range from inappropriate through to appalling…“

To each of these families and individuals, I want to extend my condolences for what you’ve been through, and my respect for your willingness to fight the system as it stands, and to make your stories heard.