Rights of Autistic People, with explanationsApril 14, 2008
Well, I found a true gem while surfing the net. This brilliant little compilation brings together all the rights of people on the autism spectrum, and guess what? *GASP* they are much the same rights as the rights everyone else has, except they are worded to be specific to people on the spectrum, because, like, people actually need to be told directly, and have in text, that autistics have rights. Here we go people, an exploration/explanation of those rights.
I have already referenced the first paragraph of the intro.
Second paragraph: it has been the responsibility of the signatories of the UN Convention on Persons with Disabilities since it’s adoption on December 13th, 2006 to treat such persons with dignity and respect. Persons with disabilities have been around WAY, WAAAAAAAAAAAY before that.
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Given the circumstances of our global society being primarily interested in profit and personal comfort, even perhaps at the expense of others, it comes as little surprise to me that such a document was so long in the making. But progress is progress. I think those of us who have an interest in disability rights (disabled people, their allies, and any other interested party) should definitely celebrate two years of having an actual UN Convention for the matter. The two year anniversary is still several months away, but we can do things NOW to celebrate, and then have one big blogfest on the actual date, detailing what we’ve done, where we’ve been, positive steps taken in the preceding months, etcetera.
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Back to the topic of the “Autistic Bill of Rights” (my name for it)
You can read the rights and then my explanations/how to implement the rights, etcetera. I will just list my explanations, as the page will not allow me to cut and paste each right first and then explain it. Sorry about that.
First Right: living with dignity and independence. Okay, that’s pretty self explanatory, it basically means the right to have an environment free or nearly free, to the fullest extent possible, of overload triggers (which vary with each person, can include sudden loud noises, annoying or uncomfortable textures, bright colors, harsh lighting, etc) and the ability to do as many self-care tasks independently as individual capacity allows for. Be generous with the amount of time you let an autistic person try to do something for him/herself, err on the side of a little more time than you think should be given, unless the person is showing obvious signs of overload or frustration from attempting something unsuccessfully.
Second right: to accessible, early, unbiased, and accurate diagnosis. Wow. That seems like a tall order for many people, especially the early and accurate parts. In our case, we were not diagnosed accurately the first time, and we were certainly not diagnosed “early” by any stretch of the imagination, the body was almost 22 when we were finally given a correct diagnosis of Asperger’s Syndrome. Personally I see very little difference if any between autism and aspergers. This post, and others like it by Amanda, might clarify my thoughts better than I can at the moment. But I digress again. I basically mean that I’m not into the whole hair-splitting game that many psychiatrists and clinicians seem to like to play, with the semantics of diagnosing someone autistic versus aspergers using criteria that are somewhat arbitrary and open to several different interpretations.
Accessible means able to be located and procured at a reasonable price, to me. There should be enough professionals to go around, for parents to be able to take their children in for evaluation if such measures are deemed necessary. Note: SHOULD is the operative word. The truth is, there are not enough professionals (in the strict sense of the word…..there are many quacks wanting to make a quick buck, or several hundred. Researching that is currently beyond the scope of my ability or patience level. I am just an autistic person writing. Other bloggers have covered that topic, specifically Orac, Amanda, and…..I can’t remember offhand. They’ve gotten to the quack part that is. Actual research on number of professionals in a given area, not sure where to find that. And yet another digression.
In addition to being autistic and multiple, we also have adhd, so we tend to get off topic somewhat frequently. Sorry. Back to accessibility…..
We have work to do in this department, of accessibility. More honest professionals need to be found, so that prices can become reasonable. One way to cut back on the power that Autism Speaks and other cure-oriented organizations have, is to make them less necessary. The root problem, I think, is that parents feel that they are not being provided sufficient alternatives. Yes, those seeking assistance from cure organizations are going about seeking help in a very screwed up way. But I’d like to believe that at least some of those parents are genuinely desperate and don’t know where to turn, and that they don’t truly want their kids cured, but no one else is available so the cure organizations are filling in that void. Sounds kind of like Hamas in Palestine, right? No one else was helping those people, so they elected Hamas to power because they actually did stuff for the population, like providing healthcare and basic infrastructure. Think of Autism Speaks, Cure Autism Now, Generation Rescue, and other such organizations as our equivalents of Hamas and Hezbollah.
Early diagnosis? Now we’re getting obsessive with how early we want to test children for autism. Anything can happen at 6 months old. How can we define what is normal six month old baby behavior? Personalities, while apparent as early as 2 months (so I’ve heard, don’t quote me on it, I’ll try to research it later perhaps) are hardly fully developed at 6 months of age, or even a year. Every baby’s personality is different, so while quietness or aversion to holding might be a sign of a future diagnosis of ASD, it might just be that the kid doesn’t like being handled, and that might go away in a few months. Not all animals like being handled all the time, so why can’t we give that thought the same kind of consideration when talking about babies? Of course they need to be fed and changed and all that, but other than that, and showing some affection, why not let the kid alone if that’s what he or she wants? Heck, the kid might grow out of it faster, if it’s just a personality thing. That’s not to say it cannot be a sign of autism. But there could be other explanations.
Okay, next right.
Third right: accessible, early, and continuing education based on their individual needs. I think that’s self-explanatory. Correct me if I’m wrong.
Fourth Right: to opportunities for vocational training without discrimination or stereotype. Mostly self-explanatory. It basically means the autistic person should be able to get job training without worrying about harassment from other participants, and at a level that corresponds to his or her actual abilities, rather than what they might “look like they can handle”. Free of stereotype means that the autistic participant should not be pressured into pursuing such and such job just because “that’s what most people like you end up doing.” Says who? Let the person decide for him/herself, with some coaching from a trusted helper/other person is necessary, what the best job for him or her might be.
Fifth Right: to meaningful employment and to earn a living without discrimination or stereotype. See explanation of fourth right, and add to that “should not be financially penalised in terms of earnings just because of being autistic”
Sixth right: to assistive devices and support services…..that means if the person is unable to speak, get him or her a communication device. Read about augmented communication here. The rest is pretty self-explanatory I think. Again, correct me if I’m wrong.
Seventh right:to participate in the development of policies and programmes and management of services provided to them. That means: let autistics have a say in what kind of assistance they get. “Nothing about us, without us.” I cannot remember who used that phrase. If someone else does, please let me know and I will do my best to give proper credit.
Eighth Right: to freedom from mental, physical, or pharmaceutical abuse. Wow. I could write pages about that. Fortunately, I don’t have to, because others already have. This is an example of what not to do to autistic people. It flies in the face of this 8th right. Here is another, and another.
Ninth right: freedom from unwanted incarceration in psych wards or institutions or other restrictive settings. Click any of the links in the previous paragraph, and you will find horrific descriptions of institutionalisations( not the posts themselves, but click in the category of institutions on that blog, there’s a lot there. I’ve only been in psych wards twice, and that was two times too many. Even though it felt like vacation compared to being at home, that was only because my home life has gone to hell completely. That’s another story though. There is no benefit to putting autistic people in psychiatric wards, or dumping them in institutions or group homes. They will most likely get substandard care there, and they haven’t done anything wrong to warrant going there. Institutions are like jails. So are psychiatric wards. They’re scary and chaotic, and the dynamics are constantly changing. Change sets alot of autistic people off, so why on earth put someone in a situation not conducive to wellbeing?
tenth right: access to information in their healthcare and educational records. Self explanatory. Autistics just like everyone else have the right to see what others have written about them in regards to their education or care, end of discussion. If they need help interpreting anything contained in their files, then they have a right to access suitable assistance.
11th right: freedom of movement and travel. That means not being stuck in a back room of a house all the time. Or stuck in an institution indefinitely. Convicted felons belong in prison, not autistic people whose only “crime” (hardly the right word) is being born with a differently-wired brain and therefore needing more assistance than the average person.
12th right: to accessible and suitable housing. That’s self-explanatory.
13th right: paraphrased: right to participate in community events like religion and recreation just like everyone else. Autistics can have social lives just like non-autistics, just modified to suit their needs and desires. Plain and simple.
14th right: right to interpersonal relations, including marital and sexual, without fear of coersion. Hey, all you parents worried that your autistic children will never marry? That’s not necessarily true. If you decide to help them find social outlets, then they have a much better chance of finding a mate if they want one. If not, well, that’s their choice. The rest is self-explanatory. Autistics should be as free from abuse or coercion or being preyed upon just like anyone else has that right. Just because someone cannot say no to something or does not understand what’s going on does not make the situation okay, if they are being abused based on perceived lack of intelligence or awareness.
15th right: to appropriate treatment and care for physical and mental and spiritual wellbeing. Key word is appropriate. Chelation is definitely not appropriate, unless a person really has heavy-metal poisoning. That usually happens with repeated accidental contact, ingestion, or foul play by a third party. Appropriate means free of quackery.
16th right:to be involved in all decisions affecting their care. Self explanatory. If not, I’ll be very worried.
17th right: to have the information they need to exercise their rights. again, that SHOULD be self-explanatory.
18th right: to legal protection and the full observation of their rights by others. What every other person has.
Phew…..that took a while. A couple of hours actually. But it was definitely worth it.
Ivan (author) but important to all of us