The Errors and Impact of the NZ documentary, “Wired Differently”

Autism

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In the wake of the passionate and high levels of interest in the autistic Christchurch looter case, “Sunday” released another autism related story last weekend, called “Wired Differently.” Even before the documentary aired, the teaser was under attack for inaccuracies, and for highlighting a single part of the autism spectrum experience. Having watched the documentary twice now, I have mixed reactions to it.

I was expecting a piece about the difficulties associated with parenting such challenging children, and that definitely featured prominently through-out. But predominantly, the documentary focused on highlighting the short-fall in much-needed support for families with autistic children (and for those children once their parents pass away). It turned into an indictment on the lack of funding from the government, for supposedly core services, particularly those funded through the charity Autism New Zealand.

In telling this woeful tale, it shared many individual stories, starting out with the most extreme consequence of insufficient support: The murder of the autistic 17 year-old Casey  at the hands of a parent (note she was 17, not 15 years old; just one of the factual errors made in the show). The interviewer also cited a figure of 80% split-ups between parents raising an autistic child, and used an example of a one-parent home in the piece to highlight the consequent realities.

By now you should be fully aware of where the attacks are going to come in. But I’ll spell them out anyway for those of you perhaps not as familiar with these well-worn issues.

I’ll begin with the notion that caring for an autistic child can make murder understandable. The murder of a disabled child is not a natural reaction to a stressful situation; filicide is typically the result of an already mentally-ill mind. “Lack of support” might help us to understand such a mind being pushed closer to the brink, but lack of support does not explain the act of murdering an autistic child. Furthermore, there is no reason to specifically think that the rate of murder of autistic children is higher than the prevalence of autism in the population. (Useful post for these and other vitally important points: “Playing the Blame Game: People don’t kill their children because of autism.”)

The 80% split-up rate is another dodgy call on behalf of “Sunday.” I have written in a previous post, about the lack of any evidence for this 80% figure, and pointed out there that there have though been recent studies showing a far more typical rate of divorce amongst parents of autistic children. A much more in-depth and researched piece about the fictitious 80% figure can be found here. And this piece from medicine.net helps to explain why it is so important not to ramp up the divorce figures; there are real consequences for families when they think they are more likely to get divorced, alongside receiving the autism diagnosis for their child.

There are other aspects of Sunday’s report which also rubbed me the wrong way, because they were misleading, ill-explained or under-explained.

You’re left with the impression that Autism NZ is the only local / national charity doing serious work and providing serious support for the autistic community; so that lack of funding and reduced services provided by them is the be-all, end-all. Ignoring Altogether Autism, IHC, Parent to Parent, Autism House and no doubt a raft of other charities. There are a range of groups – some wholly government-funded – that provide a range of training programs for new autism families, which was one of the particular services focused on in the report. I’m not saying Autism NZ isn’t a great and useful charity, I’m just saying the impression by the story was that they were the only charity doing these works, and that the well-being of autistic families depend on their specific survival (so the government should give them money, and lots of it). (And on a side note, another factual error on behalf of the report, was their claim that five workers had lost their jobs at the Autism NZ Waikato branch, according to all other news reports I’ve seen, the number is actually six.)

The show also gave the general impression that the current government doesn’t show awareness of, or provide support for, autism families. There was mention that one of the child’s special sleeping arrangement had been funded by the government, and that some government funding helped cover carer costs. But there’s also the free developmental pediatrician visits; speech therapy; occupational therapy; physiotherapy; educational psychologists; social workers; funding provided for use as the family sees fit via needs assessment agencies (eg can be used for ABA and carer support); and the non-income-tested fortnightly payments from the child disability allowance. Then there are the teacher aides and specialists provided through the special needs schools, and within the mainstream school environment too.

I’m not saying we couldn’t do with more support. Neither am I saying some families who need access to these services always get them. I am saying that the government does clearly recognise the needs of autistic families and have shown this through a wide net of supports available for free. This was not made clear in the report, but is clearly highly relevant to getting an accurate picture of the level of support for our families.

Now I’m not saying the whole report was bunk. It was emotionally touching, and accurate in its portrayal of the hardships many families face. Having said that, autism is a spectrum, and though they refer to that a few times, I was not surprised to see adult and high-functioning autistics complaining that the piece misrepresents autism. Journalists almost always manage to upset one end or the other of the spectrum though. Either painting it too harshly or painting it too kindly. In Sunday’s piece they were simply presenting realities, rather than presenting a definitive face of autism. I wouldn’t be too ready to jump on the band-wagon of blaming them for not representing the true diversity, especially considering the theme of addressing the lack of support where it is most needed.

I was pleased to see Sunday talking about and addressing the lack of support for autistic adults, particularly those who have reached an age where they have lost their parents. I worry a lot about what will happen when my husband and I can no longer support our son. I love the idea of a community village for adult autistic people, and would be one of the first in line to buy into such an option for my son. The idea that this could be a reality here within a matter of years, was very encouraging. But I am not aware of what is really available out there, and considering my disappointment with their information about other aspects of the report, I find myself a tad cynical about the accuracy of the support for adult autistic people too. I simply don’t know how accurate their portrayal was.

There was some moments in the report that sung to me with heart-felt recognition; such as where the family asked their child whether he wanted a squash or a tickle. This is something we ask our son almost every day, because he responds so well to both types of contact, and the squash plays a particularly meaningful role in our interactions with him. It always feels great to see other families so like our own in these ways; it really does make you feel less alone and less misunderstood.

The ultimate up-shot of the report – for all its flaws (some significant, some less so) – was a raising of further awareness and empathy for what it’s like to live with and raise an autistic child. The fact that various political parties (I’m aware of the response by Labour and the Greens), have decided to get passionately behind the cause directly following the report, is worth noting. They are calling for more support for our families, and having a good whinge at the current government for dropping the ball. I’m aware that the current government has actually dedicated many millions specifically targeted for autism, and have heard a lot of very positive things about their awareness of and dedication to our families, so I was sadly surprised to see them under such strong attack, but what else would you expect in an election year? (It’s hard not to be cynical; that we’ll be forgotten after we’re no longer the hot topic or it’s no longer an election year.) Still, can’t complain about them fighting it out to who’s going to be the most generous to our families. I’ll be keeping an eye on (and sharing) the rhetoric as the election gets closer.

So all-up, far from the best piece of journalism I’ve seen on the issues, but arguably more good than harm will come from it. Time, and the local public reaction, will tell.

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10 Responses to The Errors and Impact of the NZ documentary, “Wired Differently”

  1. nostromo says:

    To add to the list there are Nappies provided by the Health Boards, support services available through CCSDA, the Autism Intervention trust (AIT) etc (in fact I only found out about CCSDA’s services because I was in one of their offices fixing some things and saw a poster about Autism and decided to ask!!!).

    As a short sound bit type of article I thought it was pretty useful overall though, and highlighted for people who otherwise wouldn’t know some of the realities facing us.

    In terms of Govt services I think we actually to be fair get a pretty decent whack. When you look at what has been provided to my son, its not bad.

    But I feel more could be done, and that it can be justified. I wonder if my son had been DXed by 18 – 24 months and had intensive early intervention starting immediately what might have been – instead of dilly dallying till finally a DX at 3yrs then us having to setup our own part time ABA programme, train our therapists, become employers etc.

    What would the cost of earlier DX and properly funded intervention be to the Govt compared with providing a sheltered existence for an Autistic adult for 40-50 years and all that comes with that? On that I think it can be justified on a cost basis alone.

    I’m assuming a lot really, but overall the evidence and the govts own papers agree.

    http://www.educationcounts.govt.nz/publications/special_education/61791/1
    http://www.educationcounts.govt.nz/publications/special_education/61210/1

  2. Jack (Wife of Jack) says:

    What does CCSDA stand for?

  3. Thanks for your well thought-out and informative comment nostromo.

    Wife of Jack, I hadn’t heard of it before either, but I think it stands for CCS disability action: http://www.ccsdisabilityaction.org.nz/Support/tabid/108/Default.aspx

  4. Leona Byrne says:

    I thought the piece was awful!! It was wrong on soo many levels… and don’t get me started on Autism NZ and Alison Malloy!! She will kill that organisation in another year… the same as she stuffed up Plunket…. but another organisation u don’t mention that has amazing resources, in Auckland, is CAFS..Child Autism Foundation. The most amazing toy library, course, coffee mornings etc… Also Autism House is now only internet based and pretty hit and miss.. thanks Alison!! CCS are amazing, and I sooo don’t want to sign over to GSE with ORS… but i think they mainly take children with physical limitations as well… not just ASD…. and quite small… only 40 kids in Auckland. Thanks

    • Hi Leona,

      Thank you for adding those charities and organisations to the list, and too for bringing my attention to Alison Malloy. I heard an interview with her the other day too that pissed my off because of errors and attitudes expressed in it, but I thought maybe it was just a blip on the otherwise-good radar. Looks like there’s more going on there than I was aware of. As ever, I appreciate you bringing your knowledge and experience to the comments, and opening a few eyes and informing many people in the process.

  5. Lucy says:

    Alison Molloy did ruin Autism NZ – anything or anyone who could outthink here was destroyed by her in an intentional plan. Her style of managerialism from the 1980’s resulted in outstanding branches being pulled back into mediocrity so as not to highlight the reality of mis-used funds in other regions. Oh and the creative accounting she was known for was rife in the organisation. She did nothing for the community of Autism other than to try and make herself look good – the only result is that Autism NZ is left as another tired organisation with little ability to make an impact.

    • The more I interacted with and heard about Autism NZ over the years, the worse I thought of it. I know of many autistic adults in particular who feel it doesn’t listen to or care about them, and families like mine who feel they have become too expensive to belong to and weren’t doing a good job in the first place. Unfortunately they’re still the best known autism charity in NZ so no doubt still attract the biggest funds from the public. Thankyou for sharing your own views Lucy, they just add to a growing picture of a charity that lost its way and is no longer serving the autism community in the best way it could and should have.

      • Lucy says:

        Altogether Autism is certainly picking up the slack and being progressive. Autism NZ could easily be left behind. Autism NZ doesn’t cater for adults, its not where they put lots of money into. They focus on children. Remember that adult aspies have a very sharp brain and can out-think many people, even the fieldworkers employed, so given that their is no place for them. They seem to have forgotten that all these children with autism will one day be adults who think and remember, what could have, should have and would have – if things had been led differently.

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