Good terms but bad outcome?

There is an ongoing discussion about to obtain support without having a disorder. There are different terms for people with autism:

The official term is now autism spectrum disorder. People with autism tend to prefer the term autism spectrum condition sounding more value-free, without main focus on deficits. It’s also pointing towards the underlying genetic cause of autism. Everyone with autism develops different. There is no determined way for people with autism.

In a very similar way this is true for people with 47,XXY. The pure existence of an additional X doesn’t say much about his future. There are some numbers about increased probabilities of comorbid diseases or neurologic conditions but even if XXY is diagnosed before birth, nobody will know how the child will develop later. Therefore I prefer the term XXY condition for people with XXY, too.

Klinefelter syndrom is another issue, not interchangeable with XXY. Klinefelter syndrome might be called a disorder or disease because of the consequences of hypogonadism. The majority of men with Klinefelter syndrom (i.e., identifying as men) will probably suffer from enhanced breast development, small genitals as well as infertility. Some will also suffer from frequent diseases like osteoporosis or diabetes. However, it is not accurate to say all people with XXY suffer, like a mother said „my son isn’t only Klinefelter. He’s much more than it.“

So if we talk about XXY itself, we talk about XXY or XXY condition or people with XXY (condition). No offense so far.

If we talk about Klinefelter patients or people with Klinefelter syndrom, it’s used in a medical environment, talking about testosterone replacement therapy, physical traits and co-morbidities.

The main difficulty is, however, to obtain support if necessary. To get help from health care or other institutes, it’s necessary to have a diagnosis. A diagnose, however, is given in a purely negative context, i.e., something is wrong compared with the general population, like a disorder. Although we know that autism is just a different way of human being, not necessarily negative, the majority of autism experts as well as the people we usually deal with every day look at autism as a disorder. So it’s kind of a strong perception bias preventing us from using the terms we would like to use to look at us in a more value-free way, without prejudice. For support, we have to play out the card of suffering while to present ourselves in the best light we have to highlight the advantages of autistic thinking. We are forced to use a double-tracked way to succeed in everydaylife, at work, in school, etc.

Simon Baron-Cohen already wrote a long discussion about the term disability for autism in 2000:

He mentions this dichotomy in a subchapter voting for going on with the term disability to ensue special support.

Special funding does not automatically flow simply because one regards the child as ‚different‘. Given this economic reality, one should not remove the term ‚disability‘ from the description of AS/HFA without ensuring that extra provision would still be available even if the term ‚difference‘ was more appropriate. This is really an issue relating to social policy, health and education economics, and the legal system.

Moreover, his discussion is only addressed to people with Asperger’s syndrome or high functioning autism (which is another arguable term) whose assets are more obvious to the outside than in people with low functioning autism. Here is maybe the tricky part of this consideration. While the deficits of low functioning autism are quite obvious to necessitate special funding and support, the deficits of high functional autism are less obvious, and a significant number is late diagnosed.

So probably – at least at present – we depend on these negatively-loaden terms to explain why we need special support although we look like typical people, we are able to speak and we may have partners, children and even a full-time job. The more people with autism will give up hiding, spread their feelings and wishes with help of social networks and help reducing autism clichés and prejudice, the less we have to rely on labels we don’t like for us.

  • (sidenote in german: In Deutschland gibt es die autistische Störung, die Autismus-Spektrums-Störung und den Oberbegriff Krankheitsbild, manchmal wird auch von autistischer Erkrankung gesprochen. Eine treffende Entsprechung für condition ist mir noch nicht eingefallen, am ehesten noch Veranlagung, im Hinblick auf die (unbekannte) genetische Ursache. In jedem Fall sorgt alleine die Sprache im deutschsprachigen Raum für einen Schwerpunkt auf den Schwächen von Autismus und der Abweichung vom ‚Normalen‘.)

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