top of page

Say AAAAAAA...

Many of you still remember that episode when you went to the Paediatrician and you were asked to open your mouth, stick out your tongue and say AAAAAAAA, right? And how many times you wanted to say it was hurting or bothering or something else and you couldn't? You're all tuned into this experience and what it can provoke, right? Something similar happens in relation to autism. It's true, just like our throat can get inflamed and needs to be watched. So does autism need to be (re)analysed over and over again over time.


Since the implementation of autism as a diagnosable condition in the 1980s, the medical model has continued to dominate the way we understand autism. So far so good, whether in relation to autism and a whole range of other clinical conditions. However, throughout these years, the very people with this condition, their relatives and some health professionals have been demanding another model to conceptualise this condition. A model that is equally as complex as the condition itself. And comprehensive enough to encompass the whole of autistic people. And, although fundamental, the medical model is no longer enough to think about autism.


More recently, more precisely from the 1990s onwards, there has been an increase in the understanding of autism through the neurodiversity model and the lived experiences of autistic people themselves. However, there is often a misalignment between the medical model and the preferences of the autistic community. In particular, there is a misalignment around the language we use in society to discuss autism and autistic people. Language misalignments being particularly important, with language playing an important role in transmitting understandings of a group within society.


I don't like being called blind! I am blind. I don't want to be called disabled again! I am not schizophrenic! I am a person with Schizophrenia! I am not Autistic, but a person with a diagnosis of Autism Spectrum Disorder! I am nothing of the sort. I am Luis (fictitious name).


These and other phrases have been heard many times and in different situations. From situations where they are used to purposely offend the other person. But also when the word itself is used to characterise another person or situation, but is still referred to in a negative way. Or when the person simply doesn't know how to say it and instead of asking the other person, says what they think is appropriate. And autistic people, themselves, are also not consensual about what designation to use. Some prefer autistic people, others autistic people, but also people with autism or diagnosed with Autism Spectrum Disorder. And others prefer not to hear the word at all. And there are still those who say they are Asperger's and not Autistic. And almost immediately you hear someone saying that Asperger's no way because it is associated with the name of a person who collaborated with the Nazi system. And within the autistic community we find activists, some of whom do not have this diagnosis but are parents of autistic people, and they also say that this or another designation should be used. And of course, the health professionals themselves also have a word to say, and they do it. Either in their daily communication in clinical practice or in congresses and other scientific works. But regardless of all this, at least three things seem certain to me: there is no consensus and there seems to be room for several possibilities, being necessary to have a dialogue among all; language has a great impact on the way we communicate and represent autism; and there is truly a felt and perceived impact on the way we address autism and the autistic person.


The media is a powerful tool that has been used in recent times to typify and inform public opinion about autism. Examples such as the 1988 blockbuster Rainman, at which time autism had recently entered the DSM, has been seen as a blueprint for future representations of autism. Albeit much criticised throughout all this time up to then. But why? Is there not an autistic person who might be similar to the autistic character depicted in the film? Certainly there is, either in most of the characteristics presented or at least in some of them. But does the character in question represent the entire autistic community? The answer is twofold. No, it does not represent the whole autistic community. But autism is it so heterogeneous that it seems impossible to have one character that represents it. If we think about it, about 2/3 of the autistic population has an associated cognitive deficit. And within this group we will find an equally representative number of non-verbal autistics. And of course, we have people with a diagnosis of Autism Spectrum Disorder level 1, which in the past was also called high-functioning autism, or Asperger's Syndrome, etc. This very issue of the different levels referred to in DSM 5 in relation to the diagnosis of Autism Spectrum Disorder raises doubts in some people. They think that the levels refer to different autisms. When in fact these levels reflect the level of support needed to intervene with the person.


As we can see, it is fundamental to keep reflecting about all this. And there is no doubt that we will all lose as long as a monolithic narrative of autism in the media persists, and that at the present moment with the social networks has become even more so, but that threatens to alienate autistic people.


9 views0 comments

Recent Posts

See All

Autistic People Wanted!

Good afternoon, I was wondering if you could send the job interview questions in advance? asked Ana (fictitious name). The other incredulous person even asked her if she was joking. What do you mean?

コメント


bottom of page