Pragmatic choices of what is important and possible

[ Master thesis about fathers to a child with autism ]

To have a child with autism is a continuing and constantly changing process of experience. The fathers collect experiences along the way with this different family-life, which did not turn out as they expected it  to. They live a pressured and unpredictable daily life, of which they use metaphors such as “war zone” and “marathon”. They often have to take one day at a time, and in periods of their life one can argue, that it is more survival than actually collecting experience.
It is very important for the fathers to be a good father. They all place a high value on children and family. Although they fulfill the role as a father in the Danish societal sense, it shows that the choices they make through the process, and what they value in proportion to being a good father, is very different. The analysis shows, that their road is shaped by pragmatic choices of what is important and possible.

dad blackbelt

The yardstick of mythical normality

Those that accepted me, worked with my neurology not against it. Their yardstick was not a mythical normality but the potential that they felt that I could achieve. They recognized that my way of doing and learning certain things was different. Instead of proceeding from the assumption that was somehow wrong, they worked with it and helped me to find the place where my neurology and the world could safely mix. 

What Acceptance Means to Me | Published on April 20, 2013 by Lynne Soraya in Asperger’s Diary on http://www.psychologytoday.com ]

streetview

People are people – despite their labels

I generally despise the “despite” in the following sentences

I’d rather we use a child with autism, a child with ADHD, a person with asperger… A mother, a woman, a Dane, a black person – a person. Children with a diagnosis is so much more than the diagnosis – they are children. People are so much more that their labels, they are people first – labels second.

IMG_5938

See also:
https://jlottosen.wordpress.com/2012/04/03/they-are-just-people/
https://jlottosen.wordpress.com/2012/03/24/har-du-set-en-med/
https://jlottosen.wordpress.com/2012/01/27/the-geeks-and-nerds-syndrome/

it’s your greatest skill that matter

it is increasingly a worker’s greatest skill, not his average skill level, that matters. As capitalism has grown more adept at disaggregating tasks, workers can focus on what they do best, and managers are challenged to make room for brilliant, if difficult, outliers. 

This march toward greater specialization, combined with the pressing need for expertise in science, technology, engineering and mathematics, so-called STEM workers, suggests that the prospects for (knowledge *) workers will be on the rise in the coming decades. If the market can forgive people’s weaknesses, then they will rise to the level of their natural gifts.

The above is from  The Autism Advantage – I have replaced the word “autistic” at the * with KNOWLEDGE and it’s probably true for most knowledge jobs – including software testing 🙂

Hire Autistic People; Here’s Why | inc.com | January 3, 2013]

“It will be an economic failure if the new wave of high school graduates can’t be employed. All these kids have talent and ability and a tremendous capacity to contribute. We have to stop thinking that all employees have to be the same, with the same skills, the same attributes.”

For example, anything very repetitious and detail-oriented, work that requires great visual memory for the spotting of anomalies. You might not often think of someone with autism in terms of communication but they can be fantastic at understanding rules-bound communication, where it matters exactly what can and can’t be said to whom. 

The Autism Advantage | New York Times | November 29 2012]

This emerging understanding of autism may change attitudes toward autistic workers. But intelligence, even superior intelligence, isn’t enough to get or keep a job. Modern office culture — with its unwritten rules of behavior, its fluid and socially demanding work spaces — can be hostile territory for autistic people, who do better in predictable environments and who tend to be clumsy at shaping their priorities around other people’s requirements.

dad blackbelt

See also: The Geeks and Nerds Syndrome Who has excellent memory and strong attention to detail

Testing is your sensory nerves

Remember how the brain reorganized it’s neurons when information stopped coming in? Just because the ‘wiring’ is fixed and the information flow is restarted doesn’t mean that the brain will start listening! Second, the brains’ map of sensory information coming from the hand has been distorted, and the brain will have to relearn the hand-map again.

It’s very much like a management board having to learn how to include information they haven’t had for a while, in their decision making.

Testing is your sensory nerves

DSC03562

Seriously joking or joking seriously

If joking is only taken jokingly
and seriousness only seriously
– both of these, it seems to be,
have been taken too literally

[Danish saying by Piet Hein, my translation]

see also for heaven’s sake, don’t make any changes to our mother-ship

They are just people

When you have met one child with XYZ, you have met one child. That also goes for children without labels and letters. Behind the letters (ADHD, ASD, Red hair, Dark skin, …) – they are all children, as we are all grownups.. and humans. We might be somewhat alike, but we are also different.

Stigma and the “Othering” of Autism | Published on April 1, 2012 by Lynne Soraya in Asperger’s Diary on the UN World Autism Awareness Day ]

If my autism had been recognized as a child, and I heard someone say, “I hate autism.” I would certainly have felt it to my core. The logic here is simple; I would think as follows: If “autism = bad,” and “me = autistic”, then “me = bad” must be true.

For me, autism means I have certain traits that can be very disabling in some conditions. However, if supported correctly, and in the right environments, a great many of them be turned to advantages. I attribute the bad things that have happened to me not so much on the traits themselves, but ignorance (myself and others’) of them.

If a person is autistic, autism goes with them wherever they go. If autism is something to be hated and feared, hate and fear will follow too. In the scope of things, it’s fear that is the most damaging. Don’t teach people to fear your child. 

Let’s all work together to help others to see that people (with autism) are just that, people. They are different, but not less. They are nothing to fear. 

They are just people

My bold and parenthesis. See also   Lidt autist har man nemlig lov at være

Geeks and Nerds by xkcd.com
Geeks and Nerds by xkcd.com

Har du set en med …

Har du mødt et barn – har du mødt ét barn. Det gælder uanset om det barn har bogstaver i bagagen eller ej – alle børn er forskellige med styrker og svagheder. .. Det samme er der med voksne, rødhuder og andet godtfolk.

Med-mennesker med handicap og sværre sygdomme – har det sværrere end du lige ved det…

Hvad førtidspension har gjort for mig, 27 år, kronisk syg |  Syrene Theresia den 29. februar 2012 ]

Når du ser en person, du kender, som er førtidspensionist/kronisk syg/handicappet/psykisk syg, ser du et meget lille udsnit af den persons virkelighed. Måske 5 %. Resten har vedkommende formentlig ikke lyst til at vise dig. Fordi:

 1. Det er pinligt at være syg. De fleste skammer sig over at være på førtidspension og over deres lidelser/handicap.

2. Man vil gerne være privat omkring sine vanskeligheder, udfordringer og handicaps.

3. Mange forsøger at vise et pænt billede/en mere rask facade udad til, da de føler, de vil skræmme folk væk ved at vise sandheden.

4. De fleste er bange for, at ved at fokusere for meget på deres sygdomsidentitet, vil de blive mere syge og forsøger derfor ofte at lade som om, sygdommen ikke er der.

Se også: Lidt autist har man nemlig lov at være

The weekend formula

The more people that are in their pajamas after noon, the more weekend.
The more laundry to sort, the more weekend.
The more the boys play with LEGO trains peacefully in the morning – double the more weekend

But Where is Perry?

See also [DK] Om at kunne udsætte sine egne behov

Lidt autist har man nemlig lov at være

ing.dk | august 2006 ]

Ingeniører har oftere aspergers syndrom, som er en mild form for autisme, end folk fra andre faggrupper, vurderer eksperter. Det giver dem særlige evner for mange af de specialistopgaver, men samtidig problemer med at fungere socialt.

Karen Brøndum-Nielsen, professor, dr.med. i genetik og direktør ved sektorforskningsinstitutionen Kennedy Instituttet, understreger, at der ikke findes undersøgelser, som direkte viser andelen af ingeniører med aspergers syndrom.

»Men der er ikke mærkeligt, hvis der er en vis overrepræsentation af asperger blandt ingeniører og teknikere, fordi de jo bruger de samme matematiske hjernemæssige funktioner, som personer med asperger er stærke i,« siger hun.

[ PHLOGGEN | maj 2011 | http://ing.dk/artikel/118859-syg-i-hovedet-og-stolt-af-det ]0

Autistiske symptomer dækker et meget bredt spektrum, fra folk der er lidt rigeligt pernittengrynede med tegnsætning, til personer der simpelthen ikke kan fungere, overhovedet.  

Heldigvis er fordelingen meget tynd i den slemme ende, langt de fleste af dem der har autistiske træk har modtaget behandling. Ofte på DTU, eller AAU.

DTU og AAU bør naturligvis herefter overvejes som et relevant behandlingstilbud i distriktspsykiatrien.

Resten af os kunne passende starte en kampagne for at slippe for storrumskontorer, følelsesporno-HR og rundkredspædagogik og i stedet at få lov til at lukke døren til vores kontor bag os og koncentrere os ordentligt.

Lidt autist har man nemlig lov at være.

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