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I would like to inform you of the views of those most closely affected by autism, autistic people. Most autistic adults can communicate their perspective, if you'll listen. We range from slightly eccentric to very seriously disabled. We are the real stakeholders in issues about cure, prevention and recovery from autism. I would like to comment on a number of things on your site. This is my perspective on autism. I'm a gifted teen with PDD NOS. My perspective is unique, but has a lot of similarity to other autistic people's perspectives, as you'll see if you follow the links I provide. Firstly, you describe your mission as to find "the answers" for autistic people. My question is, what answers? You say you want to increase research into autism, to find the causes, develop treatments and eventually cure autism. You'd better ask autistic people if we even want a cure first. I'll tell you what my answer would be, and what some other people's answers are. |
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I do not want to be cured of who I am. I do not want the autistic children I enjoy playing with and teaching in the volunteering program I'm in to be cured of who they are. I do not want the autistic adults I have come to know and respect on the internet to be cured of who they are. And I know they don't want that either, because they have said so here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here and many other places. This is only a small fraction of the anti-cure statements by autistics. I have only met one pro-cure autistic on the internet so far. I have had problems caused by my PDD NOS, such as really poor time management, difficulty making friends, headaches and various other symptoms caused by sensory sensitivities, conflict about picky eating, difficulty transitioning and other traits I think of as neutral but not widely accepted, and other things. But I can tell you that the problems caused by my PDD NOS are ones I'm willing to deal with, because PDD NOS also causes my logical, abstract, narrated pictures thinking style, my spatial talents, my obsessive interests, my odd sense of humor, my acceptance of diversity, and my sheer delight in learning. In fact, it's possible to turn things around so that neurotypicals are seen as having a "disorder"(did you know that the Anglo-Saxons had no terms for good and evil, and used order and disorder in that sense?). Many autistics have done just that, here, here, here, here and here. On your autism facts page, you compare the incidence and medical research funding of autism, juvenile diabetes, cystic fibrosis, muscular dystrophy and leukemia. Jim Sinclair has spoken about this sort of thing here. I agree with him. How can you say that a condition that causes suffering and pain and eventually kills people shouldn't get far more research than a condition which affects how they think, feel and perceive in profound ways, has little if any health effects, and causes very little suffering, most of which is due to either discrimination or lack of support for certain potentially harmful autistic traits(like lack of awareness of danger). How would you convice a person mourning for her dead child that funding for a cure for autism should take away funding for a cure for what killed her child? There is only a finite amount of funding, and too much is already being wasted on curing diversity rather than curing diseases. $15 million dollars is being wasted every year on trying to find ways to "cure" and prevent people like me rather than preventing the horrible experience of outliving one's child. How would you tell this mother that you'd rather obliterate who she is than save her daughter? And you also mention the "price" of autism. People are priceless. Autistic people are priceless, neurotypical people are priceless. Recently the Canadian Down Syndrome Society put up a whole bunch of signs on buses and bus stops saying "Different Genes, Same Value" and with pictures of smiling people with Down Syndrome. I'd like to make a sign "Different Brains, Same Value" about autistics. In your section What is Autism you have some false information. You say that in most cases, autistic kids regress at the ages of 15-20 months. This is not true. Only a third of autistics actually loose skills in that period, the rest have autistic behaviours from birth. And "regression" is not really like the changeling myths. Here is an article explaining regression, from the point of view of the one regressing. You dramatise sensory problems. Although a minority of autistics truly have sensory problems that severe(and most would be happy to have treatment for the sensory problems if it didn't affect anything else), most autistics do not. Instead, we have moderate sensory problems causing certain sensory experiences to be upsetting or hard to interpret. Most would be able to easily read that letter about autism, as long as there wasn't flickering fourescent lights, a crowd, uncomfortable clothes or strong smells. Some would have trouble reading it due to Irlen's Syndrome, a problem with visual processing. Many would find it difficult to read due to the usual emotional reaction to hearing people like you described in discriminatory and hurtful ways, the same way many Jews would find it hard to read Mein Kampf by Adolf Hitler. Most of the autistics I've met or heard of do not have chronic diarrhea, liver and kidney problems, or immune problems. PubMed has no report of serious health problems being common in autism. Also, girls are usually not more severly affected. It's just that HFA/AS girls are underdiagnosed. A study found that 1 out of 7 diagnosed aspies were girls, but when they took a random sample of children and screened them for autistic traits, they found that 1 out of 4 aspies were girls. It's just that female aspies are more likely to be quietly confused than loudly disruptive. Perhaps ADHD traits are more common among male aspies, or it might be societal pressure encouraging boys to be more assertive which results in more people realising they have social problems. You describe behavioural treatments for autism. Here is a page about ABA written by an autistic woman named Michelle Dawson. I know of two rebuttals to that article, here and here, which entirely fail to criticise her on the facts, but instead consist of ad hominem attacks. Here is the autistic response to those two rebuttals. |
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