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In a highly disturbing development, UN member states have just committed themselves to preventing autism.
UN member states negotiated the post-2015 development agenda (now called “Transforming Our World: The 2030 Agenda for Sustainable Development”). The final text was agreed this weekend and will be adopted at a UN summit with heads of state on 25-27 September. It is quite likely the most important document to be adopted by the UN in fifteen years.
After three years of work on this agenda, suddenly last month language was introduced that calls for the prevention of developmental disorders, which includes autism.
There’s nothing about this in the draft version of 8 July, a first reference in the draft of 26 July, and an extended version in the final text of 1 August. While on 26 July only “greater efforts” were called for, on 1 August suddenly it was outright commitment to prevention of autism, which in effect would mean prenatal genetic testing that allows for the abortion of foetuses “at risk” of autism.
Of all the so-called non-communicable diseases – which includes cancer, heart disease, stroke, diabetes, Alzheimer’s, and so on – the only ones mentioned specifically in the agreed text are “behavioral, developmental, and neurological disorders”.
Please recall that autistic self-advocates do not view autism, a so-called developmental disorder, as a disorder or disease at all, but as a neurological difference that is equally valid.
It is disappointing, but not surprising, that none of the disability or mental health advocates present at the negotiations in New York even found it necessary to alert autistic persons to these changes threatening our very existence.
8 July (paragraph 24): no reference to “developmental disorders”
26 July (now paragraph 27): “We are committed to devoting greater efforts to the prevention and control of non-communicable diseases, including behavioural and developmental disorders, which constitute a major challenge for sustainable development.”
1 August (now paragraph 26): “We are committed to the prevention and treatment of non-communicable diseases, including behavioral, developmental, and neurological disorders, which constitute a major challenge to sustainable development.”
Fortunately, prevention of developmental disorders is still only mentioned in the introduction, but not in the actual goals and targets that UN member states were reluctant to open up for further discussions.
Goal 3 is “Ensure healthy lives and promote well-being for all at all ages”.
Target 3.4 is “By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being”.
There is still a possibility that the prevention of autism will feature as an indicator (how the achievement of the targets will be measured).
Autistic Minority International views these developments as a clear violation of the rights of autistic persons under the UN Convention on the Rights of Persons with Disabilities (CRPD).
Erich Kofmel, President
Autistic Minority International
Advancing autism self-advocacy at and through the United Nations, World Health Organization, and human rights treaty bodies. NGO based in Geneva.