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.