AFN Goals and Aims
Autism Friends Network ( AFN ) is a solidarity and campaigning group that is raising public awareness of the autism rights movement. Our group, made up mainly of Aspies, welcomes anyone on the autism spectrum.
The impact of the neurodiversity movement, including Aspies for Freedom, in particular, has stimulated scholarly discourse on the subject and has been covered in depth by multiple peer-reviewed journals.
The aim of Autism Friends Network is to educate the public that the autism spectrum is not always a disability, and that there are advantages as well as disadvantages. Our group still supports and participates in the annual Autistic Pride Day. The group also campaigns against abusive forms of therapy, and against the idea of a cure for autism. AFN hopes to have autistic people recognized as a minority status group.
The board does belong to the community. It wouldn't be what it is without the contributions of members.
One of the main aims of AFN is to fight against the idea of a cure for us. We dont want to lose who we are, and have future autistics wiped through genetic screening
And to prevent eugenic elimination of autistic people by opposing pre-natal testing for autism.
With the right support services in place, all autistic people are capable of living meaningful and fulfilling lives. However, negative media coverage and deliberate pity campaigning have created the public opinion that autism is a “tragedy”, and that people with autism have no hope of achieving anything. As such, the availability of a pre-natal test would cause the majority of autistic people to be aborted.
And to oppose physically or mentally harmful “treatments” targeting autistic people.
Due to the public perception of autism, a large number of unethical treatments have become quite common. These include physically harmful treatments (such as aversive behavioural therapies or restraints), mentally harmful treatments (such as 20-40 hr/week ABA, restriction of non-harmful stimming and other autistic coping mechanisms), dangerous non-medically approved therapies based on discredited theories or religious beliefs (such as chelation or exorcism), and therapies that would be called “torture” if they were used on non-autistic children (such as the electroshock “behavioural” devices).
AFN advocates the removal of all physically or mentally harmful therapies.
And to emphasise the “spectrum” view of autism, and de-emphasise the differences between the various autistic spectrum labels.
Part of the problem with the “autism as tragedy” point of view is that it carries with it the idea that a person is somehow separable from autism, and that there is a “normal” person trapped “behind” the autism.
Being autistic is something that influences every single element of who a person is – from the interests we have, the ethical systems we use, the way we view the world, and the way we live our lives. As such, autism is a part of who we are.
To “cure” someone of autism would be to take away the person they are, and replace them with someone else.
Many problems associated with autism are caused, or worsened, by prejudice. The root of this is prejudice itself – if we deal with only the forms of prejudice that currently relate to autism, another form of prejudice will rise up to replace them.
Because of this, AFN chooses to oppose all forms of prejudice and bigotry.
Another extreme is the desire of some groups to ascribe mystical qualities to autistic people, which has the side effect of dehumanising autistic people.
Autistic people are everywhere. There’s a good chance that you work with or know an autistic person without realising it. Autism isn’t a tragedy, or a side-effect of genius – it’s a difference to be valued.
As such, AFN will attempt to destroy stereotypes to create a positive and realistic idea of what it means to be autistic.
AFN is centered to cater primarily for people across the Autistic Spectrum, however we welcome any Unautistic allies of Autistic People with open arms.
contributed to by: Staff
What's it Like to Be Autistic?
Here's one of the questions that an openly autistic person would do well to get used to answering. If you know any autistic people, you've probably wondered about it, even if you've never thought to ask out loud. What's it like from the inside?
Speaking as an autistic person, this is a very difficult question to answer. The simple answer is I don't know. Autism is the natural state for me, and as such, I have nothing to compare it to. Just like you wouldn't be able to tell me what it's like being neuronormal, having never experienced anything else.
While most people seem to understand that answer, I also realize it might be disappointing. Let me see if I can give you a more detailed answer. Please understand that I can only answer from my own experiences and I can only relate them to my own experiences. Some of what I describe here will seem different or foreign to you, and some may seem familiar. Since much of what I'll talk about are things that most people either don't think to share or are uncomfortable sharing, it's difficult to tell which is which.
Autism is a social disability, so experiences with attempted social interaction seems like a logical place to start. Throughout my school years, I was never really able to get the correct social behavior. The people around me would usually let me know somehow, usually by laughing at me. I never understood during that time exactly what I was getting wrong. All I knew was that, even when I was copying the behavior of others around me, it would still be wrong.
Human behavior is frequently difficult to understand for a naturally logical individual. One thing I've learned is that the neuronormal mind must be trained in logic in order to use it, meaning that there is very little logic involved in normal interactions with others. The autistic mind, on the other hand, is highly logical. This means that when we apply our own way of thinking to the behavior of others, most of it won't make sense. That isn't to say that we can't learn it.
Temple Grandin has described autistic people as being anthropologists from Mars. This is a description that has always made sense to me. I am, almost on an academic level, studying my own culture from the outside. In college, I took classes in psychology, anthropology, and even acting, all of which have helped me to better understand the world around me. Of course, having more experience, seeing more interactions between people, and being around less judgmental people have helped as well.
Despite some of the social difficulties I've had, I can think of three types of communities (outside the autism community) that I've felt very comfortable in. In no particular order, the first is hippies, who tend to be very accepting of diversity and non-standard social behavior. Second is nerds. Many of the characteristic autistic traits, such as obsessive interests, focus on details, and memorization of seemingly useless information, are considered normal in nerd culture. Finally, the martial arts community. Martial artists are taught that the skills they learn are dangerous, and therefore, to try to avoid conflict and get along with those around them. If done well, this can lead to some very open-minded people.
Perhaps the biggest reason for social difficulties in autism is a simple matter of where the focus of attention is directed. My understanding is that most people focus pretty intently on facial expressions, body positioning, and tone of voice, starting as infants. There is a strong emphasis placed on the importance of social conformity.
In contrast, for an autistic person, being excluded from the group, while unpleasant, is not completely devastating. However, there is a trade off. Most of us tend to direct our focus to how things work. Whether it's structural, mechanical, biological, ecological, or even linguistic, we tend to excel at looking at the individual pieces of something and figuring out how they work together. I would guess that this is why many of us learn about things that interest us very quickly. Now that I think of it, I've even had to learn about social rules through this lens.
One question you've probably had on your mind since you started reading this is what is the most frustrating part of being autistic? I would have to say that it's people who think they know something they don't. Throughout my life, people have frequently tried to explain how I experience the world, usually without asking me about it first. Of course, they're also frequently wrong.
This might seem harmless. So people think something that isn't true. So what? In fact, it isn't a problem until people start acting on it. Most of the time, it has been in the form of accommodations I didn't need. I remember one teacher that set up a private room for me for when I was overstimulated. It was my choice when to go there. That's an example of something that worked, and was based on ways I actually experienced things. On the other hand, people have also said before that touching me caused physical pain. It didn't. I just didn't care for it. All that belief did was cause people to be overly careful around me and create an unnecessary distinction between me and everyone else.
A related frustration is when I read studies that are based on false assumptions. For example, the use of some chemical has increased, and autism rates are skyrocketing, therefore there must be some connection. Even worse is when the researcher acknowledges that there might not be a connection, but says that we have to relate it to autism anyway to get people to act. I find that to be highly disingenuous, and likely to negatively affect the researcher's credibility later, and it's insulting to us, as it reinforces the view that we're damaged people.
Are there problems or frustrations that come along with autism? Absolutely. Would I want to do away with them? Not really. I've learned a long time ago that the problems I have getting through life come with benefits that I would never want to be rid of. We all have problems as we go through life, and we all have talents and skills that come along with those. Mine are just part of the autistic experience.
contributed by d_olson27
The Ugly Side of Autism Speaks
The first time I had ever heard of Autism Speaks was a public service announcement, in which the odds of an autism diagnosis were compared to those of your child dying in a car accident. That didn't sit well with me. But at the same time, I wondered if this organization was actually trying to help, and, like so many before them, had just missed the point. Sadly, this does not seem to be the case.
What followed was a long string of announcements and advertisements that continue to make offensive or dehumanizing statements about autistic people. A common theme within the Autism Speaks narrative has been that autism is more common than childhood AIDS, diabetes, and cancer, combined. While this is technically true, it is a horribly offensive comparison to make, as many of us on the autism spectrum do not feel that we are diseased, and do feel that we are capable of living a happy, and in many cases, normal life.
There are two videos in particular that have been made by Autism Speaks, and were distributed via the internet. These are titled “Autism Every Day” and “I Am Autism.” Both of these videos are presented with disturbing background music, and portray autistic children at their absolute worst, providing no context to help explain their behavior.
In the Autism Every Day video, children are shown screaming, as if that's the normal state for them. Throughout the entire video, parents talk about their children right in front of them, as if they aren't there. You don't do this to a normal child, so why is it acceptable with an autistic child? Six minutes and twelve seconds into the video, one of the mothers even talks about wanting to drive off of a bridge with her daughter, and talked herself out of it by thinking of her neuronormal daughter. Her autistic daughter was right in front of her.
I Am Autism presents a sinister sounding voice to represent autism as an entity, trying to take away children. This has been almost universally criticized within the autism community. Frankly, there is nothing about this portrayal that I don't find offensive.
To their credit, Autism Speaks has pulled both videos, but only after much criticism. I could find no acknowledgement of either video on Autism Speaks' official website.
In an interview conducted in September of 2011, Dana Marnane, vice president of Autism Speaks, made the following apology for their offensive ad campaign:
“We are a young organization and we learn as we grow. Without a doubt we have made mistakes – and to those we may have offended we are truly sorry. We never set out to offend. We are sincerely trying to help all those struggling with ASD. The autism spectrum is just that – a broad spectrum – and we respect that there are many different points of view. What touches someone can offend another. What we ask of this community is to also respect that others don’t think or feel the way they do – that doesn’t mean their opinions and thoughts are wrong. We all need to learn to be respectful and compassionate.”
I find this apology to be weak. It is not appropriate to ask for greater understanding of one's actions from a community that has been soundly offended and harmed by those actions. Further, I have seen little change in the tone of Autism Speaks' message since this apology.
So, we've established that, while Autism Speaks is spreading awareness through their public service announcements, that awareness is far from being beneficial to the autism community. But that isn't the only thing Autism Speaks does. What about the research department? Surely, more knowledge about autism must be beneficial.
Autism Speaks spends approximately $16 million per year on research. That seems respectable. But is that money being spent wisely in areas that are of benefit to the autism community? The short answer is no.
Much of the research that Autism Speaks pays for is oriented toward finding a cure or a cause. For significant portions of the autism community, these are irrelevant. Most autistic people do not want to be cured, and all of the likely non-genetic causes have been debunked. Further, Autism Speaks still continued to spread the idea that autism is caused by vaccinations, even after their own science department said that it's impossible.
The autism community would much rather have this money spent on supports and service, and research that will lead to improving the lives of existing autistic people. While Autism Speaks does devote some resources toward these areas, they sadly don't seem to be a high priority.
It may seem surprising that an organization would so aggressively act against the desires of the very people it claims to represent, but it goes even further than what I've said so far. Autism Speaks has a history of making legal threats against autistic people that speak against them. Most notably, Zachary Lassiter for designing a parody t-shirt, and a girl simply referred to as Kelly, the founder of a website called NTSpeaks, both in 2008.
Autism Speaks called off the lawsuit against Kelly after it was revealed that she was 14 years old at the time. They deny making any legal threats against Zachary Lassiter, despite the seller of the shirt confirming the source of the threat.
In 2012, a woman named Simone Greggs was being hired by Autism Speaks. She had completed five interviews, and had passed the background check and drug test. The offer was rescinded after she asked for schedule accommodations for her autistic son.
In addition, Autism Speaks has only had one autistic person on their board of directors, John Elder Robison. Robison has long been an advocate of autism acceptance. He joined the board to push Autism Speaks' actions in a direction more closely aligned with the desires of the autism community. He finally resigned in late 2013, after having made no difference at all.
What can possibly be the purpose of an organization that seems to be so aggressively opposed to the views of the people it represents? In the year 2012, Autism Speaks spent, as I said previously, approximately $16 million on scientific research and awards, and a whopping $2 million dollars on family services. That's $18 million dollars, or 28% of their revenue for that year, on their stated goal. $23 million dollars went to salaries, benefits, and payroll, including executive pay. I think this answers the question.
I'm not writing this to cause despair, or to make your blood boil. I'm writing it as a call to action. The autism community deserves representatives that speak our views, and that share our goals. How shall we push back against the ones that have so abysmally failed us? Leave your ideas in the comments below. Two weeks from today, on July 20th, I will write a follow-up, combining the best suggestion, some of my own ideas, and some things that are already being done.
contributed by: d_olson27
Autism with a Capital A
1. What is the Autistic Community?
The Autistic Community Consists of:
1. Autistic people.
This includes people from across the spectrum, including Aspies – people diagnosed with Asperger’s Syndrome
2. Unautistic Allies
Such as parents of Autistic People, Unautistic siblings of Autistic People, Unautistic Children of Autistic People, Partners and friends of Autistic People, and any Unautistic person who sees Autistic People as their equals; as their brothers and sisters.
2. What is the Autistic Rights Movement?
The Autistic Rights Movement is a practical activism movement, focused on actively improving the lives of people in the Autistic community. It is inspired by the philosophy of Neurodiversity: the idea that people of an uncommon neurotype (such as Autism, Synaesthesia, Dyslexia, Dyspraxia, ADHD or ADD) are not inherently ‘wrong’, rather that they are different and equal to people of more common neurotypes. Moreover, according to the philosophy of Neurodiversity, a person’s neurotype is part of their own identity, and to mould someone’s identity into a warped vision of ‘normality’ is to ultimately destroy a person’s identity.
The basic aims of Autistic Rights Movement are:
1. To increase the services, and improve the accessibility of services, for the Autistic Community
These services include (but are not limited to), Psychology and Psychiatry, Speech Therapy, Occupational therapy, necessary early intervention, Counselling and extra support for parents and families, resources for Autistic Adults in regards to employment and accommodation.
2. To ensure that such services mentioned above are completely non-harmful (both physically and mentally) and are at the highest standard possible.
3. To push for education reform, so every child across the Autistic spectrum has access to education that is right for them as individuals.
4. To oppose all forms of eugenics and Autism ‘cures’, as well as oppose the organisations and public figures who support these ideas.
5. To completely de-stigmatise Autism by increasing awareness and educating the general public on the spectrum view of Autism.
We don’t ‘pretty’ things up, but we acknowledge both the positive and the negative aspects of Autism
6. To unify and enlighten the Autistic Community
7. To ensure that all people on the spectrum, no matter where they fall in severity, are given the opportunities to live a happy and meaningful life
8. To revolutionise society’s views on Autism Completely!
contributed by: black butterfly
Getting rid of the niche
Lets face it, not many people in the world are talking about the NDM (neurodiversity movement) or the ARM ( autism rights movement). Currently it is discussed only by individuals who are directly affected by these movements- in the case of the ARM- people on the spectrum, some professionals, some friends and family on the spectrum.
This is hardly enough to make a change in society.
This is all about AWARENESS, and COMMUNICATION; and more importantly, the RIGHT kind of awareness and communication that will attract the right people.
In essence, we need sell Autism to a larger market.
This seems very mad-men esque, i can already smell the cigarette smoke, taste the alcohol and i think i am begining to like like chistina hendricks more by the minute.
But unlike the people of mad men we cant sell lies. its all about getting the accurate truth out to a very large group of people- and of course, we are in it to win it- there is competition, namely autism speaks.
I think that in a way, previous groups of people involved in ARM have really overlooked the factor of communication- almost pigeonholing themselves because ' aspie's don't do communication'. I think that the main objective in ARM is media and communication- we need excellent PR, Marketing, and Journalism in order to get anything done.
I actually think that it is possible for us to do this- this is not above us- we can use media to our advantage to get rid of the niche.
I'm not sure if i made a clear point or not but here is a sort of flow chart that will summarise my point
1. If we want to make change happen, we need EVERYBODY talking about Neurodiversity and the Autism Rights movement- not just people who are directly involved.
What do we need to make this happen?
2. We need good MEDIA and COMMUNICATION to improve AWARENESS of this movement, as well as what autism is
3. We also need to be the best pick of the bunch- ie, Have BETTER media and communication than groups like JRC, Autism speaks and other Autism Cure groups
4. We also need ACCURATE yet POSITIVE information about Autism that is EASY FOR AN IDIOT TO UNDERSTAND
In short ,we need amazing communication and media skills
However, recently we have previously pigeonholed ourselves a bit too much, generally thinking that
ASPIES DONT DO COMMUNICATION
This really bothers me because:
1. yes, generally speaking communication is not our forte, however, some Aspies are in/ interested in being part of the media and communications industry (hello yours truely), so we arent all bad at communication
2. We all have skills, and with enough ORGANISATION we can all pitch in to help with our movement communication and public presence.
Are you good at art? Perhaps you could design pro neurodiversity/ ARM graphics and posters?
Are you good at writing? Write essays about this movement?
Are you good at music? Make music for campaigns?
Are you good at technology? Increase social media presence of ARM and Neurodiversity
the list can go on. we all have things we can do to pitch in to this
contributed by black butterfly
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