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‘Mental disorder’, autism and human rights

Hilary Stace

 

There is a well-known saying that a society can be judged by how it looks after its most vulnerable citizens. People with impairments are not inherently vulnerable but are at particular risk of negative interactions with the State for a range of reasons, such as a lack of strong advocacy. People may have impairments but it is society which disables people. Hence the ‘social model of disability’ whereby disability is both personal and political.

 

Disabled and locked up

Recent media publicity has revealed that one of our most vulnerable citizens has been seriously disabled by society in that he has been denied human rights, liberty and citizenship for many years. Why?

Ashley Peacock is a 38 year old man with autism who has been locked up under the 1992 Mental Health (Compulsory Assessment and Treatment) Act in one of our mental health units[1]. Despite numerous reports from authorities such as the Human Rights Commission, media, and even warnings from the Ombudsman about our UN obligations under the Crimes of Torture Act, he remains there. He is restricted in the areas he can access and sometimes he is locked in seclusion. But he has never committed any crime. His ageing parents who are also his welfare guardians want him in a community residential placement in a quiet rural environment where they can visit him and with support take him fishing and for the bush walks he enjoys. A provider has offered to train and provide carers 24/7 if a suitable house can be found. The Capital and Coast District Health Board which in charge of his situation, insists (very unusually) that money is not the problem. So what is?

New Zealanders took a leadership role in drafting the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which we ratified in 2008. During its development process, the New Zealand Mental Health Commissioner, herself a former psychiatric patient, championed Article 14 which includes the clause ‘the existence of a disability shall in no case justify the deprivation of liberty’ and guarantees ‘reasonable accommodation’ if disabled people are deprived of their liberty through any process.

But during these years of disability rights progress Ashley remained locked up in the mental health system. His parents sought help from numerous agencies without success.

But Ashley is not the only one. A recent case in the Wellington High Court was taken on behalf of three other adult men with intellectual disability/autism and assorted health conditions who were held in secure units and (allegedly) forcibly medicated, secluded, denied facilities or possessions and harmed in various ways over several years.

Additionally, numerous cases of historic abuse claimed by those in State care, who were often children at the time, await resolution. The 1992 Mental Health Act was intended to signal a new accountable and transparent consumer/client-centred era so such cases need never happen again.

Yet cases of disability and mental health abuse continue to appear in the media. How can we understand it in a policy sense, and what can we do?

 

Autism is not a ‘mental disorder’

Even the diagnostic labels which get people into the system are contested. The 1992 Mental Health Act created a label called ‘mental disorder’ that had a particular legal and clinical meaning. It did not take into account how those with autism might present, such as ‘meltdowns’ from sensory overload.

In 1992 autism was seen as a rare condition affecting perhaps 1 or 2 children in 10,000. They were often nonverbal, seemingly quite impaired and often institutionalised. The condition was known as infantile autism or childhood schizophrenia.

However, in 1994 the 4th edition of the American Psychiatric Association’s Diagnostic and Statistical Manual included a new condition called Asperger Disorder in which people with autism could also be articulate and able and so brought many more children and adults under the condition. Numerous families now had a name for this puzzling condition and soon prevalence of autism was estimated at 1:100; a spectrum of conditions across the life span. Latest data from the United States has a 1 in 68 prevalence rate with four times as many males as females affected.

Clinicians looked at autism and saw deficits in communication, behaviour and obsessive interests. However, people with autism such as Temple Grandin started telling us what it was really like. She and others described an intensity of the senses in sight, touch, taste, smell and sound. She found other humans unpredictable and puzzling, which caused her much anxiety. Stress led to meltdowns which others saw as psychosis. She described how medications often worked differently for people with autism.

There is the saying that if you’ve met one person with autism you have met one person with autism. But there are usually aspects in common, such as a desire for order and predictability, fear of change, literality, and anxiety often caused by other people. Clear written rules for everyone to follow helps. Many autistic people deal with the sensory overload or stress through physical activity. Some self-regulate by verbalising their thoughts or reciting favourite passages of movies or TV programmes. Parents of people with autism use strategies such as social stories to warn when change will happen or visual or verbal cues to encourage self-regulation when meltdown threatens.

The diagnosis of Aspergers was not around when Ashley was a child. He didn’t get help at school, was not protected from the inevitable bullies autistic children face, or live in a community with understanding of autism sensitivities or meltdowns. So he ended up under the Mental Health Act. He also had considerable unaddressed dental pain for years which likely exacerbated his behaviour and affected his drug regime. He’s a lot more ‘able’ than many other people with autism who live safely and happily in the community – he is articulate and can make intricate fishing flies. So why is he still there?

The idea of ‘mental disorder’ for people with autism under the Mental Health Act is outdated and unhelpful. The New Zealand Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003 was developed for those committing offences for whom the court process was inappropriate because of their intellectual impairment. But Ashley and others who haven’t committed any offence remain locked up. Seclusion only increases boredom, trauma, psychological distress and the potential for harm.

Most articles of the CRPD are relevant to those held under the Mental Health Act. The CRPD is based on important principles such as presuming competence, reasonable accommodation, supported decision making, and citizenship.

 

Hope through community activism

This year an unofficial activist community has developed around Ashley’s parents. It includes people with expertise in autism, behaviour, medication, law, media and disability support. As a result of careful strategising there has been a series of high profile media articles by journalist Kirsty Johnston who is expert at requesting and interpreting official information, links developed with politicians, an online petition and a high profile TV programme.

There are some positive developments. Catalina Devandas Aguilar, the UN Special Rapporteur on the Rights of Persons with Disabilities, visited recently and offered help. The Human Rights Commission has a current project on seclusion and restraint. Momentum for widespread change is gathering with the crowdsourced people’s review of the mental health system. The newly elected Capital Coast DHB has the power to help Ashley.

As activists, we want the CRPD to be implemented. We want reasonable accommodation, the presumption of competence, supported decision making, and a legal system that works for disabled people and families, not against them. It is time to review that outdated Mental Health Act to align it with the Convention. We can surely do better than lock New Zealanders up because of impairment.

 

[1] All this information is in the public arena following significant media attention. This paper has been approved by Ashley’s parents, who supplied the main photo.

Hilary Stace
About the author

Hilary Stace

Dr. Hilary Stace is a Visiting Research Fellow with the Wellington Health Services Research Centre at Victoria University, Wellington. Her research interests include aspects of disability and her 2011 PhD was on autism policy. Hilary is a regular contributor to the Access disability blog on the Public Address blog site.
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