On 14 July 1997, in a provincial New Zealand town, a mother killed her 17-year-old autistic daughter, Casey Albury. Suddenly the spotlight was on autism as a policy problem in New Zealand. At that time autism was considered a rare and unusual condition, and if people had heard about it, it was probably because of the 1988 Oscar award-winning movie Rain man. Casey’s mother's trial, and eventual sentence, was a popular media story.
As the New Zealand story developed, a picture emerged of fragmented and inadequate services and of an exhausted, stressed parent unable to cope with the behaviour of her much-loved autistic daughter. The teenager spent most of her time at Hohepa, a residential facility for disabled people with complex needs, but at the time was home with her family. During a moment of crisis, she was strangled and drowned by her mother. The following year her mother, Janine, was sentenced to four years for manslaughter, but this was reduced after a public outcry.
For autism in New Zealand, the incident was a defining moment as the publicity generated was a catalyst for policy action. The public reaction to the killing forced political attention to this new policy problem of ASD. The Minister of Health, one Bill English, called for information and action, and was surprised by how extensive the problems appeared to be.
An interdepartmental report into ASD services was produced by the Ministry of Health’s David Curry, and Professor John Werry, an Auckland child psychiatrist, undertook an official investigation. Early in his report Professor Werry commented on the importance of parental expertise. He wrote, “If 30 years in medicine and child and adolescent psychiatry has taught me anything, it is that when a parent tells you they think there is something wrong with their child, you had better listen to what they say because they are often right.”
At first it was not clear whether the death of Casey Albury was an isolated incident or indicative of a larger problem, but soon feedback from parents and professionals, surveys and research, confirmed extensive problems around support for people with autism and their families, and many gaps in service provision.
A decade of work began which resulted in the launch at Parliament on World Autism Day, 2 April 2008, of the New Zealand ASD guideline, with hundreds of recommendations based on international best practice of the time for autism. The Guideline acknowledges Casey’s death as the start of the process of reforming ASD services in New Zealand. The bottom line was that there had to be massive improvements so that no other people with autism would be killed.
The reporting around Casey’s death focussed on the burden of caring for someone with high needs, and there was much public sympathy for her mother. The personhood of Casey, as a young woman with her own interests, such as playing the piano, was largely ignored.
A few years later a Nelson father suffocated his baby daughter after learning she had complex impairments. He was acquitted despite complaints from the disability rights movement that this placed a lower value on the lives of disabled people than for other humans.
Last April a Blenheim mother’s short memoir of her life with her disabled adult daughter was published revealing years of severe distress including mutual violence. Donella Knox and her daughter Ruby had previously featured in the media. A month later the mother was arrested for the murder of her daughter with an overdose of medication and suffocation.
In early February this year suppression was finally lifted and the second documented New Zealand filicide of an autistic daughter by her mother hit the media. Reports mentioned the exhaustion and sleep-deprivation of a devoted mother, portrayed her daughter as a complex set of medical, physical and behavioural conditions and suggested it was a ‘mercy killing’ for Ruby. In response local autistic advocates sought a longer sentence. Meanwhile Donella Knox accepted her punishment and rejected a social media campaign to reduce her four year prison term.
Unfortunately, filicide is not uncommon in the world of autism. The US-based Autistic Self Advocacy Network has named 1st March as a community day of mourning to remember disabled victims of filicide. They have recorded more than 400 instances of parents, family members or caregivers killing their disabled children, most of whom have autism. They have now developed an anti-filicide toolkit resource, and Disability-Memorial.org, a memorial to the people with disabilities who were victims of filicide.
From their website:
We see the same pattern repeating over and over again. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the ‘burden’ of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats.
This is not a new phenomenon. The Nazi killings started because a father asked the doctors to kill his disabled baby, and the Nazi state found it was an easy way to eliminate the disabled and, soon, other undesirable groups. In 2014 a memorial was unveiled in Berlin to the estimated 200,000 disabled people killed by the Nazis and naming that first child victim.
But of course, killing people, disabled or not, is wrong. Disabled people are still fully human. If we devalue people because of our ableist response to their impairments it is the slippery slope towards devaluing their lives and needs. Some say if such ideas become widespread euthanasia of disabled people would not be far behind.
This does not deny the reality of the battle to get appropriate and timely services and supports, to have people who will listen and provide for both the disabled person and the family carers. Many parents of autistic people endure isolation, stigma, extreme exhaustion and complex health needs of their own. Their caring duties are 24/7. Their children often haven’t the words to explain their needs and act out their pain, frustration and boredom. Caring is heavily gendered with often a single mother relying on a network of women for professional care services, many equally tired from multiple jobs. But in a situation when the highest skills, physicality, creativity, patience and status is needed, caring instead has low value, low pay and usually minimal training. Sheer availability is the main requirement.
There are also a few international cases of autistic adults killing their mothers or other caregivers, and many families live in fear of their beloved child’s violent behaviour.
I have a friend whose situation is similar to that of the Knox’s. She parents alone, and battles for everything. Government and non-government agencies are rarely her friend. Money is always tight and every day and night is hard work. Her daughter has assorted medical conditions and pain as well as autism.
Armies of officials and workers traipse in and out of her house and her life. There are some good and helpful people but nothing is sustainable; a problem-solving person leaves or the rules change. There are some horrible people who help destroy what little she has. But she keeps fighting for her daughter’s rights to live and participate in her local community. Like many of us with autistic adult children, she worries about the future. She would do anything for her daughter – but never kill her. Those who seriously consider murder have gone to a dark place and need urgent help.
There are solutions. Many of us hoped they would have been established following the 1997 murder and the following decade of policy attention. The ASD Guideline had hundreds of recommendations, but only a few were ever implemented. That research is a decade out of date now and global knowledge of autism has moved on, largely based on information provided by autistic people themselves. We need to update and resource data and improve processes and supports, urgently.
Let’s start by developing a well-trained, integrated, professional care workforce with good pay, conditions, and career progression so it becomes a desirable highly paid career. Let’s have lots of quality respite options, for parents/carers and their children across their lifespan. Let’s encourage and facilitate the participation of disabled people with so called ‘high and complex needs’ in the community, in neighbourhoods, schools, shopping centres, enterprises and recreation facilities so they become known as real people, with interests and personalities. Government and other agencies (and society as a whole) need to see and treat disabled people and families as more than inconvenient expenses. We all need to heed the advice of autism advocates. And as Professor Werry said two decades ago – listen to the parents.
That is how we can honour Ruby Knox and Casey Albury.