There's these tiny sentences at the norwegian board for people related to the spectrum that I am quite honestly abit shocked by when I read them. They partly conflict many of the views I have gained a AFF. Here is an example:
Jeg tror at det enkelte av oss foreldre reagerer på, er de som sier: "Jaja, nå for tiden skal nå visst alle ha diagnoser - da jeg var ung var det ingen som hadde det".
Det er sårende - og det virker som om de tror vi ønsker at ungene våre skal ha en diagnose...
TRANSLATE
I think there are parents who are provoked by people who say "Yeah yeah, nowadays almost everyone have conditions - When I was young none had them"
That's actually quite hurting - It seems like they think we actually want our kids to have a condition
The very last sentence parlty conflicts with accepting the kids condition and love the kid for who they are.
I think AFF members would be more careful to not say anything like that.
There are however bigger forum culture clashes that result in big discussions, but this show how hidden provoking comments could be.
"People who have fell into the prison of autism" (Typical curebie language)
"People who have fell for the big lies of the pharmaceutical companies" ( Mercury conspirators)
"Poisoned children" (refering to autistic children, mercury theory believers)
"People suffering from AS" (Typical curebie language)
You forgot the worst one, Erkolos - "Brain Damaged"
I don't mind "suffering" - as long as the emphasis on the source of the suffering is external. That is, we suffer because of the way we are treated by others.
I don't mind "suffering" - as long as the emphasis on the source of the suffering is external. That is, we suffer because of the way we are treated by others.
Who is to say some individuals do not genuinely feel they "suffer" from their ASD though? I agree that generalisations are wrong but just because you don't suffer from the direct effects of AS doesn't mean others can't find these effects troublesome.
I have to agree, but I dislike the thought of that it is autism itself aspies are suffering from. It is maybe uncomfortable to have sickness and then you could say you suffer from it. To say "AS sufferers" is almost like saying that all people with AS have a constant painful feeling inside named autism.
It partly conflicts the neurodiversity concept, and in my opinion it gives the wrong impression of how you can help people with AS.
It's a tricky situation, Erklos. Speaking for myself I have and do suffer from external issues. Heck, right now I have a dispute running with my local government department because they are refusing to provide financial assistance because my AS is "not significant". THAT is the sort of suffering I'm talking about - and it RESULTS in suffering from within (if you see what I mean). That is it creates the sort of distress that affects us Aspies adversely.
Of course it's different for every individual Aspie, because of the wide range of environmental factors that affect our respective lives, and the wide range of reactions to it depending on how much we are affected by our AS traits (and that in itself varies widely).
Aspies suffering in society.
I think that is a more correct expression.
Some things about having autism do make me suffer, such as getting auditory overloads and being very perfectionistic and idealistic but most of the suffering I ever had was from other people being mean.
Do individuals with autism suffer? Of course they do! Do they suffer from outside factors such as bullying, discrimination and social ineptness? Absolutely. Do autistic individuals suffer from Non-external factors? YES!
Should we expect that society neatly constructs itself around us? NO!
There is much about my autism I could happily do away with that is not externally driven. Stimming and Tactile Hyposensitivity are close to the top of the list and I am sure my little boy could easily give up his sensory hypersensitivity overload problems. It is part of us though and whilst I do not embrace it, it is part of the overall me and I accept it is inherently part of me, and therefore accept it also.
WE have to do our best to fit in with the 99% who are not autistic. We will not and can not be expected to be 100% successful here. To look at society and say I am autistic so I have a right to demand that I be exempted from doing anything that doesn't fit with me and my interests is a cop-out. To me it is as bad as taking the reverse perspective and saying we must have no support and can not have any allowances.
Sure we are going to have hard times and undue stresses. Yes we have to develop coping mechanisms and tough skins and an ability to go toe to toe with adversity. Only in doing this may we justify occasionally asking for help.
I am far tougher on my little boy than my little girl and expect him to stretch himself further outside his comfort zones. Why? Because he is HFA and my little girl is NT. I love them both equally. I demand more from him though.
It is tough love and I am always at the same time singing his praises to him and accepting when he tries at something and it doesn't work out. I am always available to listen to him and talk through things and offer him unconditional love and trust.
I think that anyone who see things differently does not experience reality the same way as I.
Nice post Rossco. I really love your attitude.
Curious as to whether the conference was on ASD or AS Erkolos?
The statements are far less surprising to me if it was on the broader based ASD. I think what makes address of the issue difficult sometimes is how broad based the spectrum really is. It is a bit like me with my slight arthritis (joint pain and stiffness) having to try to relate and compare with severe MS.
I thiink Rossco is correct in suggesting (I wanted to write "hit the nail on the head" here initially) it is the dysfunctional sensory system component that is responsible for the physical suffering where it occurs. As to the other kind of suffering, there is no excuse for it....although I personally generally attribute it to the innate shortcomings/nature of the human species. (a kind of disorder all its own)
That first quote I can actually somewhat relate to, by the way. Can't tell because the statement is taken out of context but I'm guessing it related to parent's access to appropriate treatment.
With the onslaught of greater diagnosis I actually think the societal picture/portrayal of autism is changing from that of the LFA, like Hrick ... moving in direction of the HFA/mild PDD. (How or even whether this is advantageous to you as an AS culture I'm not sure. Could hurt or help.) They (the ASD groups) only drag out the LFA picture when looking for funding.
Mom of Hrick
The question "Do people of the spectrum 'suffer' from their autism?" is something that can only be answered on an individual basis. Clearly, some feel they do and some feel they don't.
The point is that the question should NOT be asked and answered as some global, universal conclusion by the "experts" from outside the spectrum -- the pharmo-medical establishment, the media, the lobbyists et al.
By defining autism strictly in terms of suffering, defectiveness, some curse that must be cured, etc., they shut off all discussion and understanding of the authentic lives and experiences of people of the spectrum.
"Quote:
I think there are parents who are provoked by people who say "Yeah yeah, nowadays almost everyone have conditions - When I was young none had them"
That's actually quite hurting - It seems like they think we actually want our kids to have a condition"
NO, it is sometimes used as an excuse for parents who never teach their children to behave any way other than like an animal. If a child is having a meltdown, yes, they are overloaded but there is a difference between that and just rude and disobedient behaviour.
I don't care if children don't look me in the eye when they talk to me but I do expect them to learn to greet me politely when their parents ask them to and not interrupt when people are speaking and not to throw themselves around my home like missiles.
From what I've heard, the reasons many people object to the formulation "suffers from" or "sufferer" aren't just about whether a particular condition happens to cause suffering, but about the fact that the formulation usually is used to evoke pity, which is contrary to a disability-rights standpoint.
For instance, from this
style guide:
DISABILITY IS NOT A FATE WORSE THAN DEATH. DON'T WRITE AS THOUGH IT WERE.
The single greatest harm done disabled people in writing about them is to give them the added emotional baggage of sensationalized words and phrases describing their disabling condition. It's done so much -- and so unconsciously -- that it creeps into the ordinary language used to refer to disability conditions. Some editors will insist, for example, that disabled people are "afflicted with" AIDS or are "victims" of multiple sclerosis. Gradually, however, more individuals with disabilities are insisting the language used to describe them be emotionally neutral.
Emotionally loaded language is to be avoided. Avoid using "suffers from," "afflicted with," "bound," "confined," "sentenced to," "prisoner," "victim," or any other term or colorful phrase that conjures up tragedy.
The goal is to write about people with disabilities in a nonjudgmental fashion. Simple terms like "had polio" should replace "suffers from" or "afflicted with." "In" or "uses a wheelchair" does nicely as a replacement for "prisoner of" or "confined to." Most of the time, no term at all is needed other than, perhaps a reference, if relevant to the story, that the person "uses a wheelchair" or "is deaf."
So, generally when people object to the term it's not about whether the actual condition causes suffering, but about the fact that it's unnecessarily emotional language.
I guess some people feel it necessary to use words like that to promote views on something.
If they say 'AS sufferers' they imply that AS is something undenyably bad, but they don't say it directly.
Some people just say it because it's the phrasing they've always heard.