In a post on Dr. Michael Merzenich's
blog, a debate was born regarding the attitude toward autism. An emotional approach and a clear scientific point of view seems to be like the cat and the mouse. We (in some posts), Claudiu in others and Dan in other comments sustain
a somehow the scientific opinion on this "other way of being". The initial post was about video/computer game addiction and autism. Of course, this manner -scientifical - was criticised by those with high functional autism or by some parents. Dan, told about those who disagree with the scientific point of view that "it is unclear what you are trying to do, and your comments appear to arise from your emotion and psychology rather than from a coherent conceptual scheme that has a productive intellectual purpose." All the comments that wore based more on observations or on research were considered full of lack of empathy for those with autism. But why this reaction from those who have autism or from parents??. The fact that a researcher, a neurologist or a psychiatrist or some medical students etc are giving their time searching for the mechanism of this disease isn't a clue of their interest and passion for the condition of those with autism? isn't this the biggest proof of emotion - doing something, not just speaking about autism driven by emotions?! Also, Dan, (a very intelligent person in our opinion) sad "Again I do think what underlies each of your remarks is a rival conception of autism, one that is fundamentally different than the typical scientific/medical conception that stems from the DSM criteria." Your remarks appear to me as superficial aspects of this larger conception, and without providing a simple discussion of your rival conception, your comments appear as superficial, often unclear, and arising from emotion (including those with autism who have posted here), and as such, as I’ve noticed above, lack explanation, are disorganized, unclear, personally oriented, etc. This is the nature of emotional arguments."
Of course a scientific approach sometime seems to be cold, or it supresses the sensation of partnership and sometimes don'tleave space for too much talk in a "positive regard". Claudiu was saying that sometimes a scientific discussion (even an internet one) can be misinterpreted if the asistance is composed by ill people (especially when is about mental disorders ex: depression, autism etc). Sometimes they think that they are judged as good or bad. so....; But he was asking to - what about the right for a clear information access, which they are asking for many, many times.
More, it is interesting (especially for those who are searching the human mind) what's with this
opinion. In general, when a patient finds out that he has a disease, he has some mental stages in relation with the disease: denyal, anger......acceptance. All of this targeting the adherence and the good mood/ stress/ depression of a patient. where is situated an autistic when he builds a parallel opinion on his suffering?! (this question is apliable to the parent too). So, as Dan was saying "each of your remarks (opposite to scientific results) is a rival conception of autism, one that is fundamentally different than the typical scientific/medical conception that stems from the DSM criteria."
We are asking where this attitude can be placed : denyal by building a 'soft" vision about autism, or it is the acceptance which was reached by making a different opinion for living , after seeing (and accepting) the medical opinion. Something like... ok with the medicine, i agree, but this seems warmer.....Is the adherence affected?
Brain - neuroscience research team
If you are talking in medical - research terms - are you categorised as cold blooded?! but patients and the general opinion are asking for research result...... so....... it may be something like 'where and with who are you talking to'. It is possible to be linked to the self esteem of the patient in case of the autism, but if you are talking with a patient with some bacterial infection about what's happening in his body his self esteem will be hurt? So, autism means team work...
but this team sometimes is not made in practice by the patient, researchers, parents and physician (whatever is his speciality). I belive there are some stages: at a young age, the parents are going to hospitals with theis young children, then a behavioraly programme is initiate in parallel with the hospital survey. so, there is no denyal here, and all the medical oppinions are accepted. Futher, the child is growing, and he is a high functional autistic person. Here comes the switch...medical opinions are considered a stigmata, and the reality becomes another - "a special way of beeing". Is this a return to denyal or acceptance? Of course, to reload the example with the patient suffering from an infection - after everything is ok, he doesn't want to be seen as a carrier of a bacteria, but is the same in autism?! The special programs for autism are preparing people with this suffering for this oppinion switch, or they are considering it?!
Here are some comments by me on autism and computer game addiction (which were the start of this interesting debate):
1) "It is a world of “full control”, where a child can have the control, and the interaction with other characters from the game will not have any consequences on him (on the child) . The “interaction” between his game character (or army, etc etc) - in fact his virtual representation in his mind - and the other characters from the game is not harmful, and if an inconvenience appears (as sometime in the real world happens) it will not require a cognitive effort, a push on “reset” button is enough. In the real world - No! The character is his representation (sometimes children say : he shoot me! or what a jump I made ” but he reffers to him, even though the event belongs to the virtual character). It is about full control with no consequence, and due to the fat that a child finds himself in a character, for a moment he reach more self -esteem because of the properties of the virtual character. For a child with autism: emotions are less present (or expressed) - and a game will not require an emotional approach (as the care for a pet, or the emotions involved in the relation with the parents). A game will not require from him to express a gentle touch. A parent does. The level of aggresion is higher in many children with autism - the level of agression is higher in games, in books or in a social interaction event - No. It seems that they have a problem in complex stimuli perception: a game will provide clear defined character (by face structure for example of by the whole morphology - a monster/a witch/a human) with clear intentions - real children colleagues - not quite. Or, in a game, a group of personages have the same design, so they will be treated as a whole, a real word situation means different responses based on different characters which must be indentified (and the face is a complex stimulus, but alike (similar ) with 10 or 15 around him at a moment)."
2) just some few articles, with a scientific aproach:
Carolien Rieffe et al 2006
Michael L. Spezio et al 2006
lisabeth Hill et al 2006
David Hessl et al 2006
D. Ben Shalom et al 2006
Sandy Vickerstaff et al 2005
Anne-Marie Daoust et al 2007
Eve Müller1 et al 2006
Rieffe C et al 2000
Rieffe, Carolien 2000
and also read about depression in autism - and the effect of the depression
” Findings suggest that children with autism have difficulties identifying their own emotions and less developed emotion concepts ”
Poustka F. 2007
Montes G, Halterman JS., 2007
Jensen PS et al 2007
Lindsay RL et al 2006
Brune CW et al 2006
Reinblatt SP et al 2006
McKee SA et al 2007
Dominick KC, et al 2007
also there many, many, many other GREAT scientists who are interested in this field…i cite here just the ones I read recently. All of them sustain a scientific approach, that sometimes is interpreted as "hurting the liberty of living', as someone said.
So, scientific world - autistic persons - in a debate? ethics,dedication, passion, action, emotions, "politicaly correct", cold blooded, supportive or just business?!?! C.B; L.S.