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I accept, don't you?

After all, what do you want a diagnosis for, at this age? asked fifty-three-year-old Álvaro (not his real name). And you, are you used to accepting everything you are told? he replied.


This question and answer makes me keep thinking about what many others think - why do people try to get an Autism Spectrum Disorder screening in adulthood? But also, How does one accept a diagnosis of autism in adulthood?


The best way I still find to answer the question of how one accepts an autism diagnosis in adulthood is to listen to what they themselves say. But still, let me get this off my chest - why isn't it important to get tested to find out what's wrong with you? Do people in general neglect their feelings to such an extent that they want to avoid getting tested or don't even want to know what's wrong with them? Would people ask the question if they suspected a physical health situation? And what is this issue with adulthood that it seems that for some it no longer seems to matter to know things? Does it mean that people from the age of 50 no longer care what's wrong with you? And that the life they will live until they are 85 no longer matters if they will have quality of life? I'm sorry that the fallout has been extensive, but this is about people's lives, their physical and especially mental health, their quality of life and their right to understand themselves.


Joana, Carlos and Teresa (fictitious names) state their answer very clearly. Knowing that I am autistic was at first a shock, says Teresa. Not because of autism itself, she continues. I had read and heard about many other things besides autism. My mother is bipolar and so is my grandmother, she says. The shock is that nobody has ever understood what I have been understanding about myself, the difference, she concludes. But the difference was perceived by others, says Carlos. I had many teachers who pointed out my differences, even if in a negative way, he says. I agree with that idea, says Joana. My own family did not always accept me. And even today some members of my family do not accept, she concludes. So I think that there is not only an acceptance on our part of the diagnosis, says Teresa. It is a responsibility of all of us, she comments. For me to know that I am not lazy, ill-mannered, anti-social, stubborn and all the other things relieves me, says Joana. At first I didn't want to believe all those names they called me, says Carlos. But as the years went by more and more people said so, he continues. And from a certain moment onwards I began to believe. There was no-one else who thought differently, and I was tired of talking to myself. So I gave up and gave in to other people's ideas, he concludes. For me it was complicated at first, says Joana. I always believed in people and especially in certain people, she says. The doctors I went to never said anything to me and especially not my Paediatrician who I loved so much. It was hard for me to believe the first time they told me about autism, she says. To believe in what they told me, it was not enough that they said it. Things have never worked that way for me, he continues. I have to believe in the person and that takes a long time, he concludes. Do people have any idea what it's like to make a decision like saying you're autistic? asks Carlos. Do people have any idea of what it is like to say that you are autistic and have people say that they have never noticed? Or that it does not make any sense to them and that it must be a mistake? he continues. Do people have any idea what it's like to receive a patronising attitude in the places where we live, study and work? And to see people not letting us do things because they know we are autistic and think we don't know how to do things? And besides what Carlos says, I don't think that autistic people, or whoever, have to tell their diagnosis to others! This idea of almost having to say their diagnosis of autism so that non-autistic people know, so that they can adapt some things while others don't, doesn't make sense to me! People, all of them, have the right to the reservation of their privacy, it goes on. I assume my being autistic, but I don't feel that has to be said to others. Why? Because it is my decision, she concludes. I understand your position Teresa, says Joana. Although she thinks it is important that more and more autistic people can accept their diagnosis and what it represents for them, she says. Even because it has an important impact on the representation that is still made of autism and autistic people, she concludes.


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