Fernanda Santana’s Speech at the United Stations

Thank you very much, it’s an honor to be here.

My name is Fernanda Santana, I’m a Brazilian autistic self-advocate, member of Abraça, the Brazilian Association of Action for the Rights of Autistic People, and I’d like to thank our partner Autistic Minority International and, of course, Lumos and UNICEF for making it possible for me to be here today. What I’ll say is, in fact, the current opinion of the entire autistic community … not doctors, not parents, but autistic people themselves. And all the essence, of course, is much the same for people with other disabilities too.

I’d like to start by quoting one of the general principles of the Convention on the Rights of Persons with Disabilities: “the respect for difference and acceptance of persons with disabilities as part of human diversity and humanity”.

For us, autistic people, the keyword is neurodiversity. And we are proud to say that our neurodiversity is truly an expression of the human diversity. That’s our identity. Our autism isn’t a disease or a mental illness, neither is it a curse, our autism is part of who we are. And that’s why the existence of a cure isn’t possible. Because people are who they are, and their differences are important too.

Autism may be a relatively new word, but we have been here for a long time, across the entire history of mankind, contributing in our way. Unfortunately, society has been cruel to us. And the children are, of course, who suffer most.

Starting with the difficulty of diagnosis, especially for autistic girls and women, who often go unnoticed. In so many places it is still hard to find doctors and other professionals that can tell you, for sure, if you are autistic or not. Especially if you are a little girl who uses her mouth to talk. Many receive misdiagnosis and wrong treatments, and unnecessary medication. But a correct diagnosis isn’t a guarantee that all will be fine.

I know it’s hard for a family to notice that their child is different from what they expected. That’s frustrating, for sure. But if you think the worst about autism, just the bad part, if you think that it’s terrible and that autistic people can’t be happy, can’t live a “normal” life, can’t do anything at all, can’t have a job, or study, or marry … well, of course it will be the worst to hear that your child is autistic.

All over the world, are desperate families without information, without help, without any support at all. And because of this lack of support, they are easily misled. They give all the money they have to the first person who promises a cure, a fake-cure. And then the most bizarre things can happen. That are the “alternative therapies”.

In Brazil, for example, we are fighting against the MMS protocol, which is industrial-strength bleach that the parents give their own autistic children to drink or force it into their rectum in form of an enema. It’s so strong that it erodes the intestines to the point that they literally come out in pieces.

Recently we heard about a Chinese clinic that killed a little autistic boy by making him walk absurd distances, just because they think that autism is laziness. In France, for some reason, some psychiatrists wrap autistic kids in cold wet towels and they call that a treatment. In many countries autistic children are being exposed to injections of stem cells, for which there is no scientific justification. Some people make autistic children breathe pure oxygen in chambers that may burst into flames. Others suggest chemical castration. Or chelation, which removes all metals from the body, including calcium, which is very important to the organism. We also heard about brain surgery and other horrible things. Occasionally, someone dies, but the “alternative therapies” continue.

The convention says that “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”. But that is what’s happening today.

More conscious families, or those that simply don’t have enough money to pay for these dangerous “alternative therapies”, seek healing through unproven and odd diets and, of course, behavioural therapies, which is a polite name for brainwashing. Children are trained to pretend they aren’t autistic, trained to hide their true identity, to obey without opposition. The psychological damage is a matter of time. Compliance-based therapies, such as ABA, also make autistic children more vulnerable to other forms of violence, including bullying and sexual abuse.

Over-medicalization is very common, to drug and dope autistic children is an easy way to make them seem calm and controllable. If that does not work, then there are the mental asylums and institutions. Or, if the family has enough money, the most contemporary version, an entire housing complex that simulates the real world and keeps autistic people isolated from the real community. Is that respect? Is that protection? I don’t think so. There is no consent and it isn’t in the best interest of the child.

These children are NOT having their rights respected. And they will not, not while we don’t overcome the awareness stage and start talking about acceptance and respect. That is what we need today. We need self-advocacy. We must start to talk about what these kids are capable of, we must empower them by telling them that they can do it, can decide for themselves. Even those who don’t use their mouths to speak have to know they have rights about themselves, about their body, their health, their life.

Society needs to know that autism is more than some difficulties and that it isn’t a disease. Needs to understand that autism does not need to be defeated, because trying to do so causes the defeating of autistic people themselves and their own rights, their self-confidence, their self-esteem, their possibilities and hopes.

We need you to stop the violence against autistic children by bring information to the world. Not information about medical treatments, but about human rights, respect and acceptance. The governments need to give support to the families, the schools need to receive instruction, and children need to grow-up with their self-esteem and general health intact.

That’s the only way. The respectful way. Not just to autistic children, but for children with any disability … who are different, sure, but never less.

Thank you very much.

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Fernanda Santana

Fernanda Santana, 26 years old, hails from the state of Paraná, Brazil, and lives in the city of Curitiba. She was diagnosed with Autism Spectrum Disorder only after a serious depression during her adolescence, caused by her difficulties of understanding herself and the world. Today she considers her situation to be resolved for the better. She is an architecture student, an activist, and is engaged to be married.

 

Autism at the United Nations: An Interview with Self-Advocate Fernanda Santana

Leia em português

Translated by Catherine V. Howard

A few weeks ago, the United Nations held the Ninth Session of the Conference of the States Parties to the Convention on the Rights of Persons with Disabilities (CRPD). The meeting was held in New York City on June 14-16, 2016, at the United Nations headquarters. One of the invited speakers was the Brazilian activist Fernanda Santana, who gave a talk entitled “Ending violence against disabled children and adolescents” at one of the side events.

Fernanda Speaking at the UN

After some back-and-forth in our emails, Fernanda and I managed to meet up in the Big

Apple. We got a sandwich and visited one of my favorite bookstores, and then began our interview. Fernanda talked a bit about her experience of coming to take part in the UN conference and about her perspective on autism and activism in Brazil.

Happy reading!

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Alexia Klein – Organizations and activists from around the world participated in the Conference here in New York last week. How did you get involved, what was it like witnessing such an important event for international human rights, and what will you bring back from this experience to your activism in Brazil?

Fernanda Santana – My history with activism is more recent than you’d imagine. If someone had told me a year ago that I’d be going so far, that I’d be giving a talk at the UN, I’d never have believed it. It’s so crazy, you know? For a long time, I was one of those internet activists, admiring anyone who went abroad to put themselves on the front lines, but the idea of doing this would have really frightened me. It still does. I don’t know what changed, but one day I decided to move forward and do something different. Look, I’m certainly not saying that publishing information on the internet isn’t important, I think it’s essential, but we can’t stop there; we need representation in the outside world as well.

The first major barrier for me was coming out as a disabled person, as an autistic person, coming out to everybody: at college, to my family, to my friends, everywhere that I hung out. I don’t have any of the most obvious characteristics, those that you recognize immediately, so I manage (and have managed, my whole life) to pass as someone neurotypical. It’s exhausting, it’s draining, and mainly it’s depressing, but I’ve managed to do so, and this way I passed unnoticed for a long time, dodging all the social stigma that’s attached to the group I belong to. One day, I began to think about how hypocritical this is, you know? I talked about respect and identity, but I lived in hiding. One day, I got tired of this and decided I wouldn’t lie any more, that I’d start being more honest with myself and with my community. By coming out about being autistic, I could start to talk about the subject outside the internet, which was very important for me. In Brazil, and specifically in the region where I live, there are many different groups that are defending the rights of autistic people. I’ve seen many meetings and events being organized recently. I even tried to participate in some of these meetings, but (I know that will sound strange) I never felt quite so out of place as in one of those events or meetings about autism. Shouldn’t it be just the opposite? The fact is that none of them were meetings of autistic people; meetings about autism are meetings of neurotypical parents and/or doctors and other health or education professionals, which, oddly enough, seem to have a vision that’s totally the opposite of ours. This is something else I don’t know how to explain.

I don’t even know where other autistic people are who live in the same city as I do! I know at the most four or five others, and this is a city of 1.7 million people, so something’s wrong here. The first group where I found a real opening, a real space and a vison compatible with mine, was Abraça [Portuguese for “Embrace”]. They found out about me and invited me to come get to know their organization, and that’s where I found everything I was looking for. It was through Abraça that I ended up in the Conference on the Convention on the Rights of Persons with Disabilities. Alexandre, our president, recommended me to Erich Kofmel, of Autistic Minority International, who in turn recommended me to Lumos (the NGO started by J.K. Rawlings, who’s someone I’m a huge fan of), which funded my trip to New York. The side event where I spoke was organized by GPcwd, Lumos, and UNICEF. I met so many incredible people during the conference that it’s hard to even cite all their names, each person being inspiring in a different way. I learned a lot through this experience, mainly about what I can do, what I’m capable of, you know? At various times, I started trembling, thinking I couldn’t keep going, so many unexpected things kept coming up. My fiancé has been with me the whole time and giving me a lot of strength and courage to breathe deeply and take everything one step at a time. And I did it! I managed to do absolutely everything I wanted to do: I managed to give a talk, I managed to meet all the people I wanted to, I managed to participate as a listener in all the side events that interested me, and, even if I cried a little bit because of the stress, I kept going. I didn’t even think I’d manage to do so. I can do a lot more than I thought I could, and, in realizing this, I have to recognize that it’s my moral obligation to work for the cause I decided to embrace. I already backed out of so many things before, the moment I ran into the first obstacle, you know? But not this time; this time I went all out! That’s what I learned here: how important this work is and how worthwhile it is!

A.K. – The topic this year was looking into the future about the inclusion of all persons with disabilities. What is your view of this future within the Brazilian context?

F.S. – We still have a long road ahead of us, and it’s going to be a very rocky road, very difficult, but we can already trace the path to take and make plans, and that’s very important. We’ve got a lot of examples from outside the country that can serve as our mirror, about what to do as well as what not to do, both things being relevant. I think the greatest obstacle is with people’s attitudes, but we have so many folks who are seriously committed to the cause that I think that, no matter how difficult it is or how long it’ll take, we’re going to get there. I believe in people a lot. CRPD is a very important tool in this process, the laws that are already in effect, the regulations… each small thing is a victory, but it’s clear that having this on paper is just the first step, right? We need to make sure it gets put into practice.

A.K. – How does autism fit into discussions about disability?

F.S. – These days? In Brazil? Very timidly. In a lot of places, we’re still at the stage of telling people that autism exists, that it’s not the same as intellectual disability… we’re starting out, slowly, and claiming our space. Unfortunately, that space is still controlled by parents, relatives, and caretakers, so the autistic person still has very little voice here in Brazil… well, not just in Brazil, right? But this question of control is really just the beginning. We’ve got LOTS to do. Every time others remember to include us as one of the types of disabilities, I’m happy. It’s such a small thing, remembering that we exist, right? Even apart from knowing who we are, what we need, and everything else, just the fact that the term “autism” (or ASD [“Autism Spectrum Disorder”]) is included makes me happy, because I know that this is the result of a lot of work and a lot of dedication.

 

Fernanda (rght) and Alexia (left)

A.K. – Your talk concerned violence suffered by people with disabilities. How and why are autistic persons victimized by violence? Do data on this exist in Brazil?

F.S. – No, the data here in Brazil are very scarce. In fact, we even have problems with getting people diagnosed, and if they don’t know they’re autistic, how are they going to be counted? No, we’re still very behind in this regard.

This is a very personal opinion, but I believe that a great deal of the violence against autistic people originates from the lack of acceptance of autism. To me, autism is an expression of human diversity. Everybody is different, some are more different. This “more different” is interpreted by a lot of people as a disease, but I don’t agree, I don’t think we’re diseased. We’re just “more different” than the usual. The world isn’t set up for us, and that’s where the deficiency lies: in the world’s lack of preparedness, so, as a result, we need some extra help so we can live our lives. The violence sometimes comes from within families, who think that any action that hypothetically will “cure” autism is justified, whether it be some of those bizarre alternative treatments (from MMS [“Miracle Mineral Solution”] to lobotomies), excessive medication, intensive training so a child (or adult) “looks normal,” “discipline” imposed in an attempt to “teach good behavior,” or the institutionalization (internment) of people… even psychological violence, rejection, attacks on someone’s self-esteem. We also see violence that comes from ignorance, suffered outside the home, in the street, at school, at work. And finally, the question of vulnerability, because we have a certain difficulty in detecting dangers, which other people don’t seem to have, especially when it comes to other people’s bad intentions, and this certainly complicates things. If we started to make a list of everything bad we see happening, each more shocking than the other, we’d end up spending the whole day writing, seriously.

A.K. – Did you attend any other speech by other autistic people? Are the demands being made by autistic persons in other cultures the same or different from those of Brazilian autistic persons?

F.S. – No, I didn’t hear any other autistic person speak at the conference, but from what I know, especially about the demands being made at the global level, we’re all talking about the same thing, what we need is very similar! And realizing this is really encouraging! Having exchanges and discussions with other groups enriches our struggle a great deal.

A.K. – What else would you like people to understand about what it means to have a disability, and what would you like to see change in the world in this regard?

F.S. – I would very much like people to understand that having a disability doesn’t make someone incapable. The social model of disabilities is still unknown to most people, it still needs to be absorbed. As soon as it is absorbed, I think a lot of doors will begin to open and disabled people will start to have opportunities… at school, in universities, in the job market. This is really important for achieving autonomy.

A.K. – The UN understands disabilities as being based on a social model, that is, disabilities exist because the surroundings exclude them rather than because the individual is “defective.” Are you optimistic about the future? Do you think that society is making the effort to make the world more accessible to everybody and to make this exclusion less and less common?

F.S. – I think that society is seeing more requirements to make the world a more accessible place, but we still have a huge barrier, which is making people really care, to understand why it’s important, you know? This is something that, for the time being, I see happening almost nowhere and, when I do see it, I admit I’m surprised. I saw this happen in my university and it was really great: they care a lot about doing everything possible to include me and guarantee that I’d have all the support I needed. But this is an exception; I think I was very lucky, since, in most places, it’s not like that, people only do things they’re required to do. When we overcome this, everything will be easier, for sure. Yes, I’m an optimist, but my optimism doesn’t come from society in general, but from disabled persons I’ve met; I think they’re the ones who are going to change the world.

I think that one of the ways we’ll achieve this is to make things more personal (all right, this is an idea of mine, I don’t have any way to guarantee it, but I really believe in it). How many disabled persons do you know? Almost one quarter of the Brazilian population has some type of disability.  The other day I was thinking about this and realized that there are various people in my family with handicaps. One of my grandfathers, now deceased, suffered infant paralysis; the other hears very little. I remember one of my father’s cousins (I think it was a cousin, it’s a big family, I never know) who is an amputee, and another who is deaf. Not to mention the autistic persons; the only ones diagnosed are me and my sister, but my father also is and I suspect others are too. How many of them call themselves (or are called) disabled persons? I don’t know! But I have the impression that when we start to use the terms correctly and tell people why this is important for questions of accessibility and support, then people start to understand and feel empathy. It’s different if you hear this from a total stranger or if you read it on the Internet or watch it in a documentary… this isn’t personal. If it’s a friend of yours who’s in need, if it’s someone in your family… the weight is different. That’s where the value comes in of us talking about these matters openly. I’m not saying it’s easy; at times, you just want to hide your difficulties, since some of them are awkward, with others you’re sure no one will understand. So why spend energy sharing this? To make it personal! To make people think, that’s why. Several classmates at my university have been asking me about autism and I’ve enjoyed talking a little about it to them; I think it’s a very effective way to raise people’s awareness.

• The full text of Fernanda’s speech at the UN can be read here.

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Fernanda Santana

FERNANDA SANTANA, 26 years old, hails from the state of Paraná, Brazil, and lives in the city of Curitiba. She was diagnosed with Autism Spectrum Disorder only after a serious depression during her adolescence, caused by her difficulties of understanding herself and the world. Today she considers her situation to be resolved for the better. She is an architecture student, an activist, and is engaged to be married.

 

 

Catherine V. Howard

CATHERINE V. HOWARD is a Portuguese-to-English translator at TranslationCraft Services as well as an Amazon anthropologist and researcher of endangered languages. Growing up with an autistic cousin, she knows the challenges that autistic people face in a world that has not yet learned to adapt to neurodiversity. She is enthusiastic about how autistic people are now assuming control of their own self-advocacy and teaching the rest of us more about the myriad of ways of being human.

 

 

A PERSON IS NOT A FUNCTION

Leia em português

“Elizabeth J. (Ibby) Grace is a usually-speaking Autistic activist and Assistant Professor of Education at National Louis University in Chicago, where she lives in the suburbs with her family. She blogs at tinygracenotes.blogspot.com and is an editor on i.e.: inquiry in education (digitalcommons.nl.edu/ie/) and NeuroQueer (neuroqueer.blogspot.com). Her writing can also be found among other places in the books Loud Hands, Both Sides of the Table: Autoethnographies of Educators Learning and Teaching With/In [Dis]ability, and Criptiques. Ibby currently serves on the board of directors of Society for Disability Studies.”

Recently, along with Amy Sequenzia, she edited the book Typed Words, Loud Voices, which is a compilation of pieces written by non-speaking autistics.

Today’s piece was originally published in Ibby’s blog, Tiny Grace Notes.

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A Person Is Not A Function

Elizabeth (Ibby) Grace

I haven’t seen my friend Eric in years, and we are not in touch right now because our friendship, our communion, is about hanging out together.  He’s not much of a talker at all, maybe ten words? and not a writer.  (And even if he were a talker, I am heinous on the phone.)  Next time I am in his town, and we see each other, it will still be easy to hang out with each other as if we just left off, because we both love to sit in our sea cliff hangout hidden by sea grass and watch the ocean.  We like to do this quietly.

Eric is on the ball and understands what people are saying and doing.  I and some others find this obvious, but not everybody does.  For one thing, he knows your name if he likes you, and if he doesn’t, he will seem never to have met you, over and over.  If you are a loud face-talker who says things like Look At My Eyes, he will never openly know your name.  If you touch him without his permission, which a shocking number of people feel free to do, he won’t even look at your mouth out of the corner of his eyes ever again.  Your name is mud to him, but if someone he likes asks whether you, the toucher-without-permission, are a complete jackwagon, he will very slightly smirk instead of raging, and it is really, really funny and awesome how quickly he can contain himself.

If he likes you, he will know your name, and say it, even after years.  He says it like you are a really amazing thing, since it is one of the few things he feels like saying.  He can tell who you are by that quick glance at your mouth out of the corner of his eye.  He will also say yes or no, if he feels like it, but he’d rather say yes he wants to go to the beach by action, or invite you by getting going but leading with his head and stopping after a couple steps to make sure you get the hint of what is happening.  I know this because after two years of not seeing him I ran into him in the grocery store where he called my name before I saw him and we both dropped whatever our other plans were at his silent but clear and familiar suggestion and went to our spot in the bluffs.

When we are together there is no yimmer yammer.  It is relaxing.  I know I can go to him to get centered and real.  Eric knows I am also not going to stop him in the middle of whatever he is doing because my agenda is more important or something, and then he will have to stop right there, walk backwards, and start all over again.  This is the kind of thing people do whose names he does not decide to say.  They do it a lot.  Many people act like they don’t think he understands anything, which seems odd to me.  But now that I am online I see that a preponderance of people seem to believe that if you don’t talk, you can’t listen.  Not the truth, but widely held.

I don’t know how much Eric would or could talk if he thought talking were a worthwhile pastime, because that would be me yakking asking him a ton of stuff, which he would obviously find annoying and noisy.  He maybe doesn’t have it to self-advocate all the time in the large ways, like a job, but I know he has done it some, or made some of what is important to him known.  Where he lives, for example, there really isn’t a good job situation for people with disabilities, or even for people without, because, I’ll just say it, he lives in California.  We have all heard about California’s financial woes.  Last I knew, he spent his days in this thing called a “day center” which is really kind of silly.  But he does whatever they do there, comes home, goes to the beach.  The group home where he lives has some people in it that are on the noisier side, not his favorite, but he lives within walking distance of the ocean in a place where the property values are really pretty out of control and it’s a surprise that they even have group homes there.

If I still lived where Eric lives I could easily help figure out what kinds of jobs he would be good at and enjoy, not for hours and hours, because working too much would probably stress him out.  Plus the whole people in his face making noise thing, and interrupting his processes: added stress.  And if he wanted to, Eric could easily steal from me, or fake me out, or confuse me emotionally because I trust him so much, but I know he is not that kind of person, and I know for certain my trust is not misplaced.  The reason I know all of these things and more is because we are friends and he can communicate by being himself instead of just by talking or writing.  And I can listen by being with him and noticing who he is instead of by saying use your words and look in my eyes and press the picture pecs or whatever, and so can everyone else, but they just don’t know how important that is, yet, probably because they can’t relate to him or something.  I don’t know.  But this “high” and “low” Functioning talk that keeps happening all over the place over and over again which is supposed to separate us somehow is hurting my eyes and ears and feelings and so I have to write this.

Let me just put this out there: my world would be a whole lot quieter if I could get away with it.  But it isn’t, and I can’t, because I will yimmer yammer til the cows come home as long as it isn’t Eric’s path to tell you that Eric is a person whose life is worth living.  It’s his friends’ path, and he has other friends, and I am the one talking and writing now, because I can, which does NOT make me better than him or more of a person.  It just gives me a slightly greater hope of being heard: Eric’s life is worth living.  And not only for Eric, but for a lot of other people, such as his friends, and people in the neighborhood who like seeing him go by.

A person is not a function.  A person is a person.
Thank you for listening.
Best,
Ib

AUTISTIC AS A RECLAIMED WORD

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Most adults on the spectrum prefer to be called autistic, rather thana person with autism or a person who has autism. The general consensus is that autism is not a separable entity. To be “with” something or to “have” something implies that we might somehow be able to rid ourselves of that thing and still be the same person, much like someone who has been cured of a physical illness.

I have always been autistic and always will be. If I was not autistic, I would be a completely different person. My autistic neurology affects how I experience the world and how the world experiences me. I am autistic. This feels very simple and logical to me.

It is not, however, always as simple for others. I’ve noticed that a lot of people in the autism community (which is different from the Autistic community) find the use of autistic as a label offensive or at least uncomfortable. The primary argument is that “autism doesn’t define” the person that they are reluctant to call autistic (often a family member).

Inherent in that argument is the belief that autism is a negative attribute. Why else would someone be averse to being “defined” by a trait? Would we say, “don’t call Tommy intelligent because his intelligence doesn’t define him” or “don’t call Katie blue-eyed because her eye color doesn’t define her.” 

Positive or neutral labels are rarely challenged. Smart. Beautiful. Man. Woman. Right-handed. Left-handed. Blonde. Brunette. Few people will object if you refer to yourself or someone else by these labels. No one will tell you to call yourself a person with beauty or a person who has right-handedness.

So why the controversy over autistic? Perhaps because autism still carries so many negative connotations. We are in the processing of reclaiming autism and autistic, but we’re not quite there yet.

Linguistic Reclamation

Reclaiming (or reappropriation) is the act of taking back a word that has been used as a pejorative. When a group adopts the use of a word that has been used to demean them, they diminish or subvert the power of that word as a weapon.

Queer and gay are words that many people consider to have been successfully reclaimed. Gay, once used primarily as an insult, has become a preferred label. Queer is still in the process of being reclaimed, but well on its way. Geek and nerd, insults a generation ago, are now common self-descriptors.

I find it interesting that there is so little discussion of autistic as a reclaimed word. It certainly fits the definition.

Autistic has been and is still used in a derogatory way. It could even be argued that it’s “the new R word.” That’s so autistic and are you autistic? have become common put downs in certain gaming and internet circles.

To be reclaimed, a word first must have been used in a way that is derogatory to the group it describes. Autistic, then, is ripe for reclaiming. And I would argue that not only does it need to be reclaimed to take away its power as a slur, it needs to be reclaimed by autistic adults with the goal of redefining it in the public’s imagination.

Even before it became an outright slur, autistic (and autism) had negative connotations. For many people, autistic conjures up the negative, doom and gloom stereotypes of ASD and little more. By reclaiming autistic, by using it as a symbol of identity and pride, we can broaden public perception of what it means to be autistic.

Originally posted by Cynthia Kim in her blog, Musings of an Aspie.

COMMUNICATION IS MORE THAN WORDS

Português

Today’s author is Cristiana Giulia Calderan Bell. She was diagnosed as Austistic when she was 41 and she also has a son in the spectrum. Bell’s blog is called Sonnolenta… A Neurodivergent Journey and you can find todays story in it’s original version here.

This is an interesting piece because it goes a little bit against the idea of early intervention. In fact, one of the most important messages that Autistic adults have been trying to convey is that there isn’t as much of an intellectual deficit, even in the so-called more severe cases of autism, as it was thought. The main issue is a difficult connection between what the brain wants to do and how the body responds, besides the sensory integration issues, of course.

Consequently, according with these adults, It is necessary to rethink the way Early Intervention has been thought and executed. And also, rethink the school practices in general.

Also, check out the beautiful pictures all over her blog!

 

Communication is more than words. It’s feelings, movement, emotion and so much more…

Cristiana Bell

Words have not been forthcoming to me lately. Verbally spoken words, in particular.  I feel stuck in between days, as scattered as the leaves blowing past my window. I feel overwhelmed about writing, because so much is at stake. My words have to make a difference. Collectively, our voices at some point have to be heard.

We (every single Autistic adult I know) want so much to be understood and seen as valuable voices of experience and advice for parents of Autistic children. We don’t want the next generation of Autistic people to grow up as so many of us did (or didn’t) whether we were diagnosed (or misdiagnosed) or not. We want better. We know we deserved better, but there’s no use crying over spilt milk, so we passionately endeavor to reach out to the adults currently parenting Autistic children. But the sad part of this is that most of these parents want nothing to do with us. They say we are not like their children. They insult us with ableist comments. Some make threats. Their words are cruel, and they hurt. They say, “the fact that you are even capable of typing means that you are not at all like my child. My child will never speak, My child will never type. My child will never (insert anything here- they truly believe their child will never do anything)”.

I watched a video today, that one of my Autistic friends had shared on Facebook. It was a video of a young Autistic girl being forced to try to say “Momma” via compliance-based therapy (aka ABA). It horrified me. I read the comments on the youtube video, and it was all about people praising the Mother for her vigilant efforts. But all I saw was a frightened and tormented little girl, who was in pain… upset. Every single thing about her body language, expressions, and verbalizations was saying, “please stop, this is scaring me, it’s hurting my ears, I want it to stop!”. The entire time, Mother and another voice off camera are trying to force her to sound out the beginning of the word “Momma”, loudly and repetitively saying “MMMM MMMM MOMMA MMMM MMMM MMMM” over and over and over again, while essentially teasing the little girl with a piece of candy. They were touching her face, and arms, and forcing her to be in close physical contact when she clearly didn’t want to be touched. As I watched it, I felt like these adults thought she was purposefully not saying it, as at once point, one of them said, “You can’t give in to her”… as if her not saying the verbal sound they wanted was done on purpose. Another part of me became angry. I couldn’t believe a Mother could be so selfish as to put their daughter through this simply for the satisfaction of hearing the word “Momma”. Yet another part of me was irate that a parent would put their child on the internet like this, violating their privacy and exposing their most vulnerable moments. And still another part of me felt broken hearted for this little girl, and for all Autistic children like her, who are being traumatized with compliance therapies.

Not being able to verbally speak doesn’t mean that a child is not communicating. This little girl was completely and effectively communicating her feelings in the video. To me, her communication was so obvious that I felt enveloped by her pain and fear. I simply can’t understand how a parent could not see that- and believe me, that’s truly ironic given that I am Autistic and “we Autistics” are supposedly not able to pick up on cues such as body language and anything that isn’t obvious or literal.

Let me tell you about my Son. He didn’t speak “intelligible” words until he was four. By “intelligible” I am referring to “words that people other than myself could understand”. He made all sorts of sounds, but very few words. Regardless of this, what he was “saying” was always clear to me. I had no trouble understanding and communicating with my Son, but other people apparently did. At the time, I couldn’t understand why people thought there was such an issue with him having supposed delayed speech, or a speech impediment, or his being developmentally behind other children in his preschool class being an issue. I was (at my Mother’s behest) sending him to a Montessori school, and according to their teaching methods, it was all about each child’s individual abilities and allowing them to progress at their own pace. Imagine my shock when they told me that my child was a disruption to the flow of the classroom. That his need for long naps, help with his lunch, or help other things throughout the day were a “disruption” to them. That his needing a comfort item (a blue bunny he always carried) was a “disruption” that was not allowed. I found out that they had been confiscating his bunny each morning after I dropped him off. This of course resulted in his having a complete meltdown every morning, and being then exhausted and understandably cranky for the rest of the day. He would need a longer nap than they allowed, and this was “disruptive”.

You know what? I finally got tired of what people were telling me about my child. I got tired of a school that preached one thing, and then did the exact opposite. I wasn’t going to stand there and listen to people that wanted me to put my child into all sorts of programs for speech when I could understand him perfectly well. One morning after dropping him off, I didn’t go to work. I turned around, parked my car, went into the school and found my Son, sitting in the middle of the classroom floor, sobbing, rocking back and forth, bright red from crying, his little face and clothes soaked with tears. I picked him up, I got his bag, I demanded his comfort item, Mr. Bunny, be given to me immediately. We walked out of that school and never went back.

INSPIRATIONAL PORN AND STELLA YOUNG

Português

I was afraid this post could cause a little discomfort, but maybe I’m wrong. The problem is that I never liked inspirational stories very much. They always made me a little bit uneasy and it got worse after autism became part of my life. It could have been any other difficulty or disability, but in my case it is autism.

In the beginning it was only a discomfort and I wasn’t worried about justifying my feelings. Later the justification started to take shape by it’s own, although I had never tried to put it into words. Basically, the discomfort lays in the use of disabled person’s image as a distant fable that motivates our lives — the lives of “typical” people — and that puts our struggles into perspective. But this way we overshadow the disabled, the actual person — as common as any of us. It’s as saying that this person’s life is only important when it’s inspirational. In my opinion, this approach does not contribute to the building of a true inclusive society. It only makes us feel better about ourselves, inspired, or motivated.

Stella Young was someone who helped me make sense of my discomfort. She was an Australian comedian, writer and activist, and was was born with a bone condition called Osteogenesis Imperfecta. Unfortunately, she died last Saturday at the age of 32. In this Ted Talk she explains what she calls ” Inspirational Porn”. This is my little tribute to her.

What is Normal?

Cynthia Kim

Português

In our desire to fit in we all have wished to have a different type of hair, be skinnier or curvier, be more of an extrovert or be quieter, be taller or shorter. It is about this desire to fit in that Cynthia Kim wrote in this piece. And it is not difficult to relate to it, to almost everyone, in or out of the autism spectrum.

Cynthia Kim was had her Asperger’s Syndrome diagnoses when she was 43 years old and since then she has published two books and many articles on the subject. She keeps the blog “Musings of an Aspie” where this piece was first published.

The Seductive Illusion of Normal

Cynthia Kim

Ninety-eight percent of the time I’m good with being autistic. I was going to say “fine with being autistic” or “okay with being autistic” but I don’t want to use tepid adjectives. I really truly feel good about myself most of the time.

Then there’s the other two percent. The hard, ugly, maybe I shouldn’t be saying this but I’m wishing for normal two percent.

When I was four or five years old, I wished I was a boy. Boys got to roughhouse and play cool sports and go shirtless in the summer.

I tried the shirtless thing. It landed me in trouble, though as far as I could tell I looked no different from the shirtless boys in the neighborhood. Later, I hung around the pick-up games and sometimes the older kids let me play. I learned to throw a tight spiral and catch a long pass no matter how bad it made my ice-cold hands sting afterward. Eventually, I learned to fight.

The desire to be a boy faded.

In third grade, I wished my curly hair was straight like Marsha Brady’s. All of the cool older girls-and by older I was thinking fifth graders–had straight hair. Somehow, it seemed like straight hair would magically make me popular.

A couple of years later “Farrah Fawcett hair” was all the rage, and if I spent enough time with my mother’s blow dryer and roller brush, I could feather my hair perfectly. It didn’t make me popular but it cured me of the illusion that better hair was the key to eternal happiness.

I’ve wished for other things over the years. To be taller: more clothing choices. To be more coordinated: I didn’t make the cut for high school sports. To be more feminine: I’m not sure why, exactly.

As I’ve gotten older, the wishes have become more amorphous.

Now I find myself trying to sort out where this wishing to be normal falls. Is it like wishing for Marsha Brady hair–that one elusive change that will make me magically popular? Or is it like wishing to be a boy so I can play shirtless in the summer?

Surprisingly, I think it’s more of the latter–more of a practical wish. You see, when I most find myself wishing to be normal is when I see the people around me struggling with the–well, for lack of a better term, let’s call it the side effects of my autism.

I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.

This is when the wish to be normal sneaks up and grabs me.

I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.

It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.

And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.

Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.

I’m not sure it even matters. This will all pass. It always does.

At some point, I see the illusion for what it is, and the desire fades.

It always has.

Disobedience

 Another one by Amy Sequenzia.

My son, Asher, when he was 3.

A very eye-opening piece for those who care about an autistic person.

Originally posted here

My Uncooperative Body

Amy Sequenzia 

Stubborn.

Not very reliable.

Hard to manage.

This is my body.

Sometimes it feels like I don’t have any control over it.

Sometimes my body acts like a rebellious child who knows what it is supposed to do but refuses to follow directions.

In rare occasions my body and my mind are totally synchronized.

But for the most part my body does not do what my brain wants.

Everything that requires action is a challenge.

If I have words dancing in my head, when my thoughts are organized and I can see the sentences and paragraphs ready for the screen, I need to type them.

My brain says: get the iPod.

My body ignores the request.

My brain then says: take someone’s hand.

My body pauses and considers. What happens next is anyone’s guess.

When I am finally ready to type, my brain needs to use all the energy available to make my fingers keeps moving. A touch on my elbow by my facilitator helps my body calm down and the coordination improves.

Sometimes my body requests more than a touch on the elbow. This happens when my brain is too tired because of seizures or insomnia but my need to type is too overwhelming to ignore. After I finish typing my brain needs some rest. Sometimes my body agrees and I can rest. Sometimes my body rebels and rest is elusive.

My body also reacts at a different speed. Because of this slower response, I have been labeled “non-compliant.” I had “behaviors” or I could not understand anything. I wasn’t “home.”

If I am sitting on a chair or couch, I will likely need some help getting up. This is a coordination thing. But before that, my brain will have to be very patient. The message “get up” will travel through my body alerting my muscles and bones. Then it travels back to my brain where I have to “see” what to do, and then back to my muscles for, hopefully, some action. It might take more than a few seconds for my body to finally initiate some movement. By that time, the Very Important Therapist and Teachers of my younger years had already checked the “does not understand/does not comply” box.

Yet sometimes my body does things without my brain’s input. This is because my body does childish things.

I can be sitting at the table and suddenly get up, knocking down the chair and whatever is in front of me before my brain realizes what happened.

I can be walking and suddenly find myself on the ground, not because I fell but because my body decided that the floor was very attractive and my brain could not reason with this childish body.

I can also bolt and try to run, or my hands shamelessly go for people’s food for no reason. It is embarrassing but it is not a lack of intellectual understanding.

I have, sometimes, a childish body.

My body lacks body awareness.

This means that I never know where I hurt. I sometimes have terrible pain but I cannot say where it hurts.

Because my face doesn’t always show how I feel, my pain goes unknown to others until it is too intense to be ignored, even by my body.

Or I am believed to be not in pain at all, like when I had second-degree burns in my arms but my body kept not complaining. Some people looked at me and said: she is not in pain!

It can be embarrassing when the lack of awareness is bathroom related. And when your body does not feel, or only begins to feel the need to use the bathroom when it is already too late, incidents, or accidents, happen.

My body and my brain are usually at odds. My body is uncooperative. I also have other disabilities that make effective response difficult. Not to mention the seizure medication that slows everything down.

My body can surprise me sometimes.

Once in a while my body does exactly what my brain tells it to do. This surprises me and usually does not last very long. But it makes life fun and it makes my brain giggle.

Having an uncooperative body makes people think I don’t have a working brain. That’s not true. In fact, despite the seizures, my brain rarely rests.

My uncooperative body houses my very active, and restless, quick brain.

If my body could move at the speed my brain functions, I would be breaking many records. I am pretty sure I am not the only one.

Love, No Matter What — Ted Talk by Andrew Solomon

Portuguese

Hey! So, this post is a little different. There is no text by an autistic person translated by me, but ever since I started this project this one Ted Talk I watched last year has not left my mind.

The brilliant Andrew Solomon introduces the audience to his beautiful book “Far from the Tree” where he presents his very fitting idea of classifying identities as vertical and horizontal. This way, the vertical ones would be those that are passed on from one generation to another, like ethnicity, nationality, language and religion — at least in most cases. The horizontal ones are the ones that are we don’t share with our progenitors and that most people acquire, as an identity, later in adolescence and with peers. These would be sexual orientation, disabilities and so on.

Obviously, it is easier to deal with equals, so throughout History, the horizontal identities have been marginalized, demonized or treated as something that needs to be cured or eliminated. But Solomon speaks of true inclusion, acceptance and love — love, no matter what. And he talks about the relationship between parents and children. For all those things, I think that this video has everything to do with the idea of the blog.

Autism IS mentioned by Solomon and one chapter of his book is dedicated to it.

Enjoy it!

Ido Kedar’s Speech

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Português

Ido Kedar

Ido Kedar learned to communicate by typing when he was 12. He is now finishing High School and plans to go to College next year. In 2012 he published a book called “Ido in Autismland”.

The speech below was written by Ido for the Mental Health Advocacy Celebration last October, when he was honored with an Advocate’s Award for his “extraordinary efforts to
change the way we think about autism and to help other individuals with autism find their voice and reach their full potential”.

There’s a lot to be said about Ido’s determination, but for now I’ll let him speak for himself.

His speech was originally published here.

My Speech at the Mental Health Advocacy Services Celebration

Ido Kedar

I am truly honored to be standing here tonight receiving this recognition. I am honored to be here with our District Attorney, Jackie Lacey, too. It is a reminder that advocates can be high school students or politicians, or anyone else. We just need to care deeply about a cause.

As you look at me, some of you must be wondering if I really wrote my speech.
After all, you’ve probably heard that most nonverbal autistic people have low cognition, no insight, no theory of mind, no inner world and poor receptive language.

Guess who told you that? It wasn’t people with autism, that’s for sure.

I have a very misunderstood condition. My disability is caused by my brain’s faulty linkage to my motor system. So truly, I think and understand though I may look like I don’t. Add to that a sensory system that is malfunctioning, and you have an idea how tough it can be.

The truth is, autism itself is easier than the incorrect assumptions by the so-called experts and specialists out there. A locked-in, motor impaired, sensory overwhelmed child cannot escape this on his own. Consequently, few nonverbal autistic people learn to communicate. Experts comfort themselves that we can’t communicate because we don’t understand.

I got fed up with this, because all around me are smart autistic people dying of boredom and loneliness, not able to communicate one idea more sophisticated than a basic need.

My decision at twelve was to speak out and correct this misinformation.

I was denied an education in elementary school because of the expert opinion that an academic curriculum was beyond my intellectual abilities. Now I am an AP student in 12th grade, ready to go to college next year. If my parents had listened to my experts I would still be stagnating in 1+2=3 expectations.

Things are changing gradually. Other autistic typers are speaking out too. We face resistance by people who believe theories over truth. But in time I know that the current paradigm will be discarded, like so many other incorrect theories, and the nonverbal will at last have a voice in their futures.

Thank you.