"I don't drink coffee, I take tea, my dear
I like my toast done on one side
And you can hear it in my accent when I talk
I'm an Englishman in New York."
Sting, in I'm an Englishman in New York
We are coming to the end of another year - 2022. And once again we seek, individually or as a group, to have a whole set of proposals for improvement and changes for next year. It is a desire felt by all of us to improve our quality of life. Even if some of us have a somewhat different perspective of what quality of life and even life itself will be. And right here it seems that we begin to understand that there won't be much consensus on the subject. But is there any problem if there isn't? Probably not! But we need to (continue) to learn, understand and respect the other person's view and be more tolerant and accepting of difference.
It sounds like a somewhat puerile wish. But it is fundamental if we are to continue to live together and cooperate. At the end of this year 2022, perhaps this is my wish for 2023. To be able to contribute to the construction of a Society more able to live with differences. As well as collaborating so that autistic people are themselves the authors of their own life project. And I know that this wish of mine is the wish of many autistic people. And that it has been formulated for a long time, independently of the evolution that has been and will continue to be made in this area.
But what is the use of a life with better and increasingly early diagnoses or better and more diverse therapies if we do not live a life with dignity! says Raúl (fictitious name), a 45-year-old autistic person.
We will have to keep fighting for our rights! Especially when we still have to mask many of our behaviours to be accepted! says Ruth (fictitious name), autistic person aged 38.
It's as if the world were like this or that! says Carlos (fictitious name), autistic person aged 27. How can one be autistic in a non-autistic world? asks Julia (fictitious name), autistic person aged 58. Can you detect anything wrong in this sentence? What I consider to be deeply wrong in the sentence is not only related to autism. Often throughout the history of mankind itself we hear similar questions even if with different groups. For instance, How can one be a woman in a world of men? And usually in these two groups we realise there is a majority group and a minority group. And that in itself seems to be reason enough to build this notion that the world belongs or should be governed by the majority group! Even if this creates a War of the Worlds, as the title says.
Groups are essential elements of society, and human beings, by nature, generally manifest inter-group prejudice (i.e. behave more positively towards a member of one group than towards a member of an external group). A hallmark of human behaviour is the tendency to create social groups. And as such we find that we communicate more deeply with people who share similar interests, identities and beliefs. This tendency leads to the creation of intergroup bias, which can make it even easier for people to act more positively towards an in-group member than towards an out-group member. For example, we tend to cooperate more with members of our group and less with out-group members. Furthermore, we tend to punish out-group members more strongly when they commit norm violations than in-group members.
Certainly the fact that there has been for all these years the prevalence of a medical paradigm for autism. Not that the paradigm itself is negative. But the fact that this paradigm has been exclusive during these years has had a marked impact on the way of looking at autism and autistic people. The healthy - sick dichotomy, for example, where the person diagnosed with Autism Spectrum Disorder falls within the group of sick people or people with a disease reinforces the idea of absence or deficit of skills. And it puts these people in a place apart from all others without diagnosis, healthy and competent. In other words, this model assumes the existence of strandard or normal human abilities and defines disability or person with disability in terms of deviation from normal ability. Normative abilities being considered ideal, while deviant abilities are seen as inferior.
Obviously, this is not all that the medical paradigm for autism makes possible. It is important to understand all the added value this model had and has for the understanding of autism as a whole. However, some of the information within this paradigm and the way some people understand and use it biases and enhances its negative aspects.
And in the case of autism, and more specifically in adult people, the knowledge that is available in the Society is quite reduced. And as such, this notion of minority group seems to be more accentuated. That is, it is as if it did not even make sense to consider autistic adults. In fact, for a significant part of the non-autistic society, this condition does not even seem to exist.
What can we do then? Each one of us, autistic and non-autistic person needs to reflect and be helped to think about this aspect. We talk a lot about the ecological footprint! But what about our social footprint, or whatever you want to call it! It will be important that non-autistic people can be more and better informed about autism. But it will be equally fundamental that autistic people can be and be empowered so that they themselves can determine what they want and feel they need for their own lives.
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