After reading much about Autism Speaks and its terrible portrayal of autism and autistic people by association, I went to take a look at their mission statement on the Canadian chapter site.
[Note added March 25, 2015: Apparently, the mission statement has since been changed. At the time, it spoke of a global health crisis and the urgency of finding a “cure” for autism. Here is a link to the current mission statement: http://www.autismspeaks.ca/about-us/mission/.]
I was appalled by the tone and terminology of the statement. So, I thought I would write to them. Here is my email, their reply and my long-winded plea after reading such complacency and word-twisting. I received no further feedback. But I thought it might be worth sharing, this food for thought.
April 15, 2014
Subject: Question about your site
I read your mission statement.
You speak of a “cure” for autism, and of a “global health crisis”.
I am curious as to what new research may have come to light that supposes what “cure” may be possible for a genetic anomaly, as it is described by the AMA. I suppose that along with this, there will also be found a cure for attention deficit disorder, dyslexia and epilepsy? I would love to know which neurological disorders you plan to find a “cure” for, and how. Could you direct me to resources that will help me understand how a neurological difference can be cured? Many thanks in advance.
Also, I am wondering why you speak of a global health crisis. Are you implying that our health is at risk? I am asking because I am a healthy and happy 45-year-old with Asperger Syndrome. Now, I won’t say that my neurological differences haven’t created difficulties in my life, but indeed, I am not sick. And neither is, as far as I know, any healthy non-verbal and sensory-challenged child who struggles with development. Challenged? Certainly. Sick? Only if they have an actual sickness, which autism is not per se. As for the “crisis”, I suppose you are referring to the increasing number of diagnoses that are being registered these days. Indeed, as diagnostic tools and medical professionals get better at spotting the (by now) obvious signs of autism, the number of diagnoses is increasing. But are there more autistic people? That is a question that can only be answered by statisticians and researchers as results are compiled in the future. I would like to know, therefore, where you base your reasoning for speaking of a global health crisis.
I look forward to you answers.
April 21, 2014
From: Carrie Habert
Subject: Autism Speaks Canada – Questions about our Mission
Thank you very much for your questions about our mission. Here are the answers to your questions:
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment. One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and who have never spoken. For those individuals, the prospect of a cure of autism is really important because to that person “cure” means being able to communicate and to be free of pain.
When we speak of ASD as a Global Health Crisis, we do so for the following reasons:
– ASD is a Health Crisis because of the number of individuals affected – the CDC numbers are 1 in 68 children is diagnosed on the spectrum.
– ASD is a Health Crisis because of the wait times for diagnosis; we know that 2 years of age is optimal, yet the average age of diagnosis is 4.
– ASD is a Health Crisis because of the lack of services available to certain age groups and certain communities.
April 21, 2014
To: Carrie Habert
Subject: Re: Autism Speaks Canada – Questions about our Mission
Thank you for your reply.
I have to say that knowing the basic principles driving your organization, I can appreciate your explanation. I applaud your talent as a communicator.
However, the logic of your reasoning still eludes me. Indeed, increasing quality of life is essential for autistic people that suffer from social exclusion, disability and medical issues. However these challenges do not illness a neurological difference make. From your explanation, it is clear that you agree on the principle that autism is not an illness and cannot be “cured”. Therefore my questioning is less on the usefulness of your intentions, which in theory are laudable, and more on the ethical aspect of using the word “cure” when the meaning of it and its use in context clearly form a fallacy.
The ethical implications of such a choice are not just semantic. Many parents who are not as well-informed as you and I, may be, and frequently are, deluded by such a logical leap. Hoping for a cure defeats acceptance, which I’m sure you agree is essential in creating a family environment favorable to growth and development. As long as parents wait for a cure (as hearing repeated promises of a cure creates expectation), they are not likely to adopt a positive and accepting view of their children. Instead of seeing a whole child who needs their support, they see a pair – child and illness. Instead of encouraging the child to grow as the whole person they deserve to be, they exclude this part of the child called autism and treat it as an enemy. This sows the seeds for poor feedback and eventually resentment as the child will not be “cured” – as you and I both know this is impossible – and the child who does not understand these reactions from the parent is likely to develop low self-esteem, depression, personality issues and stress disorders. Even when the child understands that they and the parent are fighting a common enemy, the healthy mind of the child will treat this part of their being as an enemy. Self-loathing and despair come to mind. Who would want this for any child? Or indeed want to even risk it, all for the sake of a marketing strategy?
As for the so-called global health crisis you support with statistics, I see no justification in them. I certainly see a knowledge gap and social services issues. The aspects you mention do relate to health, as the diagnosis and support rely on health professionals. But a global crisis? Quite the opposite. A global movement is certainly apparent, as awareness and knowledge grow about autism. It is more frequently identified, children are being diagnosed earlier and the importance of this is being spread, and the needs related to support are growing more apparent. To treat growing awareness and knowledge as a “crisis” is self-defeating. Autism is not the enemy and we are not at odds with it. Or at least enlightened people shouldn’t be.
Treating a fundamental difference in human being as a negative concept involves an array of detrimental consequences. From discrimination to disgust to despair. Imagine physicians in the 1940’s treating genetic differences as flaws, and their conclusions being accepted by the general public. This is the slippery slope of hate. Treating any part of a healthy human being as undesirable will have that effect, to a large or small extent. Perhaps you will judge my comparison as exaggerated, and it is, scale-wise. Still, the basic assumptions of the analogy can illustrate rather clearly the risks involved in such a philosophy.
I agree with you on the principles you adopt. However, the marketing is flawed. The semantics create a cognitive dissonance that at best will create confusion and anger, and at worst hate and resentment.
I know Autism Speaks is receiving much criticism from the community of both people with autism and positive-minded parents and carers of autistic children. The strength of this opposition all stems from the marketing, the handling of that part of the child as an illness, an undesirable flaw that needs fixing. It points to the common enemy of the battle and rallies the public and the actors in a common fight, which could be otherwise such a positive force. But this rage and combating energy are aimed at autism itself, when this is in fact neither an enemy, nor an illness. Nor is the enemy the lack of a “cure”, or the neurological difference. The real enemy is the lack of empathy that permits anyone to treat autistic people with anything less than full acceptance and support as themselves, including autism, the latter being just a part of the whole, in order to help them flourish and be treated with care: medically when they are ill, with support and coaching when they are disabled, and emotionally overall.
I hope that in some small way my plea, added to that of others, can help to help your organization to aim in a more positive direction.
Autistically and humanistically yours,