It’s fascinating and frustrating to me that people on both ends of the spectrum — from “High Functioning”\/Aspergers to “Low Functioning”\/their caregivers — sometimes cannot get along. Both tend to be dissatisfied with the kind or degree of attention they get. I want the infighting to stop.<\/p>\n
From what I can tell, it appears that the HF autistics, those who can fairly readily communicate, whether by keyboard or verbally, feel that they ought to be given a seat at the table — or in fact, the head of the table — of mega advocacy organizations like Autism Speaks. This group feels that organizations like AS focus mostly on the downside of autism, particularly visible in the “lower-functioning” members of the spectrum (you can include Nat among this latter group), because it is easy to elicit attention and funding with the problems of the LF autistics. The HF-Asperger’s believe that this presents a skewed and negative view of autism, and causes people merely to aim at curing and stamping out autism, rather than learning about what it is like to actually be autistic, the uniqueness of this neurological makeup, and most of all the necessity for society to accommodate and include. The HF-Aspergers group often want to emphasize that autism is a part of them, it is an aspect of who they are, and to hate autism is to hate part of themselves, which is devastating, debilitating, and a dead end.<\/p>\n
Many parents and caregivers of LF autistics, (like me) by the way, also feel that AS emphasizes the negative of autism, as they did in this latest video<\/a>, and make our wonderful kids seem like horrors, and turn our lives into a pity party rather than looking within at the complex, layered, family lives we lead. Nor does AS try, in videos like I Am Autism or Autism Everyday<\/a>, to interview autistics themselves to get an idea of what their (multiple, infinite, human) perspectives are.<\/p>\n Often parents and caregivers of LF autistics, however, also believe that they require the attention of groups like AS because that is how they are going to get help in the end — through this kind of private-sector fundraising. (I am far more a believer in public programs, which should be better funded, so that they can do what they are meant to do). This group of LF-autistics’ caregivers believe that the HF-Asperger’s group do not really understand their concerns, their lives, which are largely given to taking care of, educating, managing, financing therapies of, their autistic loved ones. The LF-concerned group sometimes believe that autism has devastated their lives and their children’s, and mostly because there are very few paths that lead to helping them. The behaviors that occur can be terrifying, violent, and destructive. They can also be exhausting, mind-numbing, and depressing, as in the case of children who are not potty trained, who can only eat one kind of food, who run away. People need to understand this. Difficult behavior is not the only <\/span>aspect of autism, or co-morbid <\/span>aspect of autism to be more accurate, but it is a huge problem, for autistics and their families and if Autism Speaks can help with this, then that is a good thing.<\/p>\n But — what is the nature of the help they give? Is raising awareness enough? Yes, if it actually leads to strong lobbying for insurance coverage of autism therapies. Yes, if it leads to more money to support families, job supports, group home care. Yes, if it leads to giving the more socially able autistics an opportunity to guide policies affecting autistics.<\/p>\n If AS is only making the public terrified of autism and flu vaccines, then they will only be adding to our problems as a society. We will see a resurgence of terrible diseases, far worse than H1N1.<\/p>\n The high-functioning autistics do deserve to lead the conversations at Autism Speaks’ table, right alongside the LF-autistics’ caregivers. Autism Speaks must listen to the full spectrum and not just the terror of some caregivers. (Or else they should rename themselves Autism Speaks For Some.) But the HF-Aspergers group must be responsible representatives and be sure they are truly representing the interests and problems of those on the spectrum who are less able — or if they work hand-in-hand with the caregivers who understand firsthand the issues for their loved ones.<\/p>\n If we could all work together, a round table where there are no closed minds, and stop all the exclusion — imagine what we could do.<\/p>\n","protected":false},"excerpt":{"rendered":" It’s fascinating and frustrating to me that people on both ends of the spectrum — from “High Functioning”\/Aspergers to “Low Functioning”\/their caregivers — sometimes cannot get along. Both tend to be dissatisfied with the kind or degree of attention they get. I want the infighting to stop. 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