Coming Out of the Autism Closet: the Joys and Benefits of Revealing One’s Condition to the World

For this blog post, let’s imagine that you are autistic or that you know someone who is and want to make them acknowledge their conditions. At the day where many gay celebrities are becoming openly gay and gay awareness and freedom is increasing, I thought this month of April, designated by the autistic community as Autism Acceptance Month, should be a time for autistic people to “come out.” If you have autism and disclose it to your social network, you may find greater comfort and ease with them, in addition to helping foster understanding of autism. Now chances are that if you are autistic and maybe around age sixteen or older (I typically view people, often times males, in their twenties like me), you may not need any special help or treatment, you may not need someone to help you to communicate, live independently, or develop interpersonal relationships, perhaps because you’ve have early childhood support or the right education, as I was lucky to have beginning at age twelve, or maybe you haven’t but you are still extremely independent and are not a pity or a charity case. So why reveal your condition? Before I get to that please also note that perhaps with your condition, you feel alone, isolated, or misunderstood by others, even though you are in fact, a fully able human being. Moreover, there are times that you like to be alone, perhaps to think over and get adjusted to the world, or like to engage in activities suited to your interest, which not everyone shares but is in fact acceptable and does not make you a victim of anything, autism or otherwise. 

Like I said, I was lucky enough in my youth to get the right educational and support services early enough to where I barely need any supports, except perhaps to take my tests in the testing center, though I can still pass all of my tests taking them in a regular classroom. I can live on my own, maintain relationships, take care of my hygiene, have conversations with people, be in large crowds in public and in parties, and hold down a job with no special assistance whatsoever. Yet despite that I still feel myself searching for acceptance from everyone I meet, including friends, coworkers, potential dates, professors, CAs, and others, even though I know these people often times respect me perfectly well, and maybe even think very fondly of me, yet to live in this world and process the way I do I need to do things such as engage in particular activities or find time alone to recharge my life’s energy from all that is going around me, and worry, irrespective of the person I am speaking to at the time, how to excuse myself from their presence or explain what I in fact need to do. Now I am only one person, but perhaps if you revealed your condition to your friends, significant others, bosses, coworkers, and peers, they might be more accepting and understanding of the things you do and think, and will show you they care about you and respect your needs, both sensory and social as a person and someone with autism. Yet maybe you perhaps want to deny, or avoid speaking of your condition to these people. If so, maybe ask yourself, who are you trying to get approval from: them or you? While we might disagree, part of us as human beings do sometimes care about what others think about us. We are social creatures and we were made to live together, yet some people are in fact bigoted, ignorant, or don’t understand the various forms of human beings. Many, maybe even most of us, have been bullied sometime or another (when younger) due to our condition or perhaps been a victim of workplace bullying, not to mention faced segregated education or the use of improper behavioral interventions from schools and treatment centers. Naturally, we would be cautious of disclosing our condition to our friends, teachers, and coworkers. Or maybe you’ve had therapists and counselors with a negative attitude to your condition, or who, despite wanting to help, neither knew or cared to learn enough about autism or about you when it was important. For me however, sharing my condition with people is something that makes a difference in my ability to trust and relate to them. I like them to know I am autistic just as I would like them to know if I lost a parent or got married. Friends of mine who I have connected with on Facebook have by now seen my post several autism posts, and by now they must know of my condition. They have also seen much of my autistic pride paraphenilia or heard me talk to groups about my condition and work with it yet we remained friends. Maybe some people won’t be able to accept my condition, but my rule is if they don’t need me, I don’t need them. 

As I was fortunate enough to realize when  I came to college as a regular student living with other regular and predominantly neurotypical students, I had reservations about people, which were not entirely my fault, and perhaps partly due to my childhood, advice from therapists, and my parents, even as they have done all they could for me. When I first went to college as a regular student, I, perhaps due in part to the boyish charm my parents and family have pointed out in me, found myself the center of attention of many college girls, who were overwhelmingly neurotypical, with perhaps a very slight number of people with other cognitive disabilities. I would see them stare at me, play with twirl their hair like a punch drunk ballerina, or run their hands along their thighs, smile as they passed while looking over in my direction. Yet one class period, as I watched a movie on Native American prejudices seen in the use of mascots, I realized I had the desire not to be judged for my autism by some girl who did not share it, thinking she could never understand when we became so close together. Today I realize that I was wrong and that many neurotypical girls can understand me far better than many girls who are autistic, and now face certain challenges which are not insurmountable to dating many girls who I wish I'd been more open to as a result of my ignorance. I did not have the worries of finding acceptance in a relationship while I was in high school and a self-loathing autistic, as I had my autistic ex-girlfriend on and off from my sophomore year until our relationship finally towards the end of my senior year, with a complete Ferris Bueller conviction that we would get married. Yet for others, this is indeed a problem. A former social worker I know talked about his work seeing couples where the husbands had Asperger syndrome. These women often found their husbands behaviors offensive, but perhaps had they known of or understood their husband’s condition, things might have been different. I’ve learned though that you can wait months, even years, before finding an autistic girl who is right for you (the vast majority of autistic girls are believed by some professionals to be undiagnosed), and in that time plenty of non-autistic people may show up into your life who can be great partners. 

The key, I think is to know how to disclose your condition. For me, I had the natural born quality of autistic advocacy. I cared for everyone in the autistic community and it showed. I was interviewed on NBC in the summer of 2011 by Chris Hernandez about being an adult with autism, and remained confident and true to myself, which I think allowed people to take me seriously, despite the overwhelming misconceptions about autism. The trick I think for people with autism is to disclose your condition to your friends, employers, and social network in a way that speaks to your character. If you are normally a very shy and timid person, perhaps let your friends know that you want them to understand you and not judge you for things you do, which are neurological. If you are a normally very proactive employee, let your employer know that you are telling them you are autistic because you sometimes need help with certain functions and want them to understand that. If you usually go to the quiet corners at parties, let your girlfriend know you do it because of your autism. You let anyone know that you are autistic for your own reasons, and be sure to let them know so they will know that telling them is important to you and you are in fact serious about it, not strange or eccentric. If you in fact refer to yourself as autistic, rather than a person with autism, let the people you tell know that perhaps you are doing it because autism is an integral part of you are, and in case they might not understand, let them know that you cannot be the same person without your autism and that you, nor anybody else, can get rid of it. 

Do not get me wrong: some people you should not tell about your autism, particularly if they are in power and letting them know will only create problems for you. In that case, you should go to their supervisor or a human resources associate and talk to them. You are a person and should be able to say you are autistic without any fear of repercussions. But in most cases, you may find that being able to say that you are autistic creates a feeling of greater closeness and ease between you to, and it may very well better let the world truly understand autism. 

Autism Acceptance Month

             April has for the last six years marked Autism Awareness Month for many parents of families affected by autism. For the people with autism themselves, the problem with Autism Awareness Month is that it is too focused on autism from a parent’s perspective (the puzzle of autism), such as how they autism is confusing to them and they cannot understand it, and how it must be due to some environmental or social cause, such as bad parenting or vaccines. Autism Acceptance Month, however, deals with a different approach. It believes in making autism and the behaviors and traits associated with them and why autistic people do them to be understood accurately and factually, free from bias.

                Autism Acceptance Month furthermore deals with all aspects of an autistic person, such as autistic adults who face the same issues that today’s autistic children will face when they get older, such as employment, higher education, and love and relationships, all things that make the need for services for children and adults with autism all the more critical, and can be used to measure the comfort and quality of all people’s lives, including those with autism.

                For this reason I have decided to post more for The Autist Dharma this month than I have before. As many people consider this time to be Autism Awareness Month (which should indeed be every month), they will most certainly be visiting this page much more often, and I plan to use this time of unprecedented attention to raise awareness  of autistic people’s lives from our point of view.  This first week I plan to have two or three different autism posts related to these issues. In addition, this week and every other week during the month of April, I plan to have a post on the lives of various individuals throughout our society, including highly influential one’s in politics, sports, business, and so forth, and how their lives and careers as well as ours would be if it were not for particular individuals past and present, such as Thomas Edison and Thomas Jefferson, who happened to have autism. For the point of these posts, I have avoided doing your average article of lists and biographies of famous people with autism, which you can find anywhere by looking up ‘famous people with autism” on-line. 

                I have also decided to do forums for people with autism open to all autistic people and their loved ones one issues facing them such as vocation, secondary and post-secondary education, love and relationships, housing, and recreation. These will be open to all people regardless of race, culture, ethnicity, religion, sex, gender, sexual orientation, class, age, nationality, marital status, and so forth to whoever applies. For this there is no need to be a follower of The Autist Dharma or to have any prior connections to it so forth. They will be open only during the month of April to make next April’s discussions more suitable for viewers to catch up on, and I will try and post then all at least seven days in advance of the next week and the end of April to give plenty of time for commenting. The point of these forums is to gain a better since of how communities can provide better services and resources to autistic people, so I hope for the purpose of these forms that all those who come upon them will take the time to join in them. Please remember to be kind and respectful to everyone who takes part in these discussions. Those comments which are not, I will delete when I find the time, so remember that and join us for this month’s discussions on the world of autism. Happy Autism Acceptance Month!

Autism and Olympics: Not So Special After All

Ok.  I’ll give.  You probably want to help people with disabilities (or at least feel like you do). The Special Olympics is hosted about a year or so, I guess. I don’t keep up and you see why soon, but either way you have a chance to do something, you can go see the games, or you can volunteer with the event. It seems everyone wants to do this because it makes them feel good. So I guess you’re a champion, right?

            The fact is I think of participating in these games to be like confessing one’s sins to a priest, and then going out into the world to lie, cheat, steal, and all sort of profanity. To me it’s like this: we’ve jumped over hurdles, we’ve thrown our javelins, we’ve swam several laps, we go back to our lives-now what do we do? 

            The Thinking Person’s Guide to Autism says “We were asked to describe the three biggest problems for people with disabilities, and we came up with this: low expectations leading to inferior education leading to poverty.” Still think you do everything right? You think you’re the pinnacle of disability awareness? Try and answer these questions:

1.       Which of the following is correct spelling?

a.       Aspergers syndrome

b.      Asperger’s syndrome

c.       Asperger Syndrome

d.      Asperger syndrome

e.      Asberger syndrome

2.       Which is the right way to speak of an autistic person?

a.       Person with autism*

b.      Person suffering from autism

c.       Autistic person*

*assuming an autistic person you are speaking in the presence of asks this.

3.       (Assuming you are talking about a person with autism, and their autism is not relevant to the discussion) How do you refer to an autistic person in your class?

a.       Autistic guy (sorry for the gender specifics here)

b.      Girl with autism in my class

c.       Autistic person in my class

d.      My classmate/person in my class/person’ name/etc.

Well let’s see how you did.

1.       D.

A.      The person who discovered this condition was called Hans Asperger

B.      This syndrome is not Dr. Asperger’s. It is possessed by over ten million people throughout the world.

C.      Syndrome is not a proper noun. A proper noun would include words such as “Megan,” “Paris,” or “John.”

D.      Correct answer.

E.       I shouldn’t even have to explain

2.       A or C

A.      Some autistic people prefer this as it implies there is more to them than having autism. If they ask you to refer to us like this in their presence, do so.

B.      Autism does not deprive a person of his or her dignity. Most people with autism don’t view autism as the source of their suffering, but discrimination. 

C.      Some autistic people prefer this as it implies that autism is not some appendage that obscures a normal human being. As with A, if they ask you to refer to us like this in their presence, do so.

3.       D.

A.      The person’s autism has no relevance to the conversation. Saying “Autistic guy” in this case implies that their autism is the only important thing about them.

B.      Same as A.

C.      Same as A and C.

D.      Correct answer. Using their name is especially correct as they are an individual who should not be objectified.

   Clearly you probably don’t know everything. But you agree that you can make up for it by watching disabled people play games. So basically the Special Olympics simply make you feel less guilty. These games do nothing to give disabled people proper housing, assistive technology, equal employment, proper education, basic access to society. So I hope if you do any of this, that it was worth it for you, because it’s really meant nothing for us. 

A Real Call to Action: How a Certain Summit Address Should Have Gone

         In November of 2013 Autism Speaks cofounder with her husband Bob, Suzanne Wright, the grandmother of a child with autism (where's baby girl in all this?) made a speech at a policy meeting at George Washington University where she spoke of autism as an irredeemable burden that must at all costs be eliminated if families and communities are to heal. This isn’t the first time this organization has done something of this nature. Years back, Autism Speaks executive Alison Tepper Singer made a statement in The Oprah Winfrey Show where she said that when she found out her daughter had autism, in the presence of the same daughter, she contemplated driving her car with her autistic daughter into the lake but decided against it because her neurotypical daughter was waiting for her at home. Singer, along with all other Autism Speaks executives, was paid a salary over $200,000 dollars a year, despite the laws applicable in the United States to be considered a non-profit organization. Meanwhile Autism Speaks produced another video from none other than the director of Harry Potter and the Prisoner of Azkaban, whose son is autistic, called I Am Autism, with narration saying, “I am autism…I work faster than cancer, AIDS, and diabetes combined, I will make sure your marriage fails, that you never hold done a job, that you never attend a church or temple.”

Naturally Suzy’s little accident caused hoards of former Autism Speaks members to leave the organization and withdraw all their funding for it. Most prominent among them were Autism Speaks only openly autistic member John Elder Robison, author of the bestselling book Don’t Look Me in the Eye, and the father of a college student with Asperger syndrome, who lives on a campus apartment with his girlfriend, who also has Asperger syndrome, and a mother of an autistic girl, who Miss Suzy hugged at the summit despite the girl’s objections, and author of the popular autism blogA Diary of a Mom, describing her liferaising two daughters, the youngest of whom is autistic. Both of these parents spent years trying to reform the organization from within and the pageant girl’s book report was simply the last straw.

                A Diary of a Mom has dealt with numerous critics, perhaps people asking, “What was little Suzy supposed to have said?  She wanted to raise awareness.” Well Jess, the blog’s author, has recently coined a phrase (not so new really) to apply to the world of autism, “Love, not fear.” A whole post, where Jess, who admits to worrying that her daughter would never live on her own, had what I, a flag-waving autistic pride believer, call extreme autism acceptance. That can be understood though, as her blog goes clearly into all the way her daughter Brooke has enriched her life, the view of love, as opposed to autistics as threats who must be neutralized, ol’ Suzanna’s view of fear. If she had spoken with love, rather than fear (two things that Bible says are mutually exclusive, maybe her speech would have sounded more like this:

                If one in eighty-eight people [not children] were missing, we would have a national crisis. Well we do: autism discrimination. Maybe they are the people are the people we raised from diapers.  Maybe they are the people who raised you from diapers. This is autism. Maybe they are the person who stared in our production, modeled our products, saved our sick pet, treated our depression, worked with our child with special needs. Maybe they are the person we teared up next to as we said vows at the altar, who held our hand at movies, who held us when we suffered tragic losses of friends or family, who we began a family with. Maybe they are the people we saved from addiction as we believed in them so uncompromisingly that they could heal. Maybe they are the people we knew from diapers, roommate in college, godparent to our children. This is autism. We are facing a national social injustice. Hundreds of thousands will soon grow up without access to jobs, education, or housing. This is a call for action.

End of speech.

                Clearly Mrs. Wright has somewhat of an adorable 1940’s view on disability. Rather than simply children (moreover children who burden you economically), autistics are workers, teachers, counselors, doctors, husbands, wives, boyfriends, girlfriends, friends-with-benefits, fathers, mothers, coreligionists, authors. Basically autistic people are human beings! The fact that autism is associated with financial stress by even comfortably middle class people is not doubted. The fact that for every person to see their loved one discriminated is not doubted either. It’s torturous! No human should have to suffer that. But the fact that autistics, as Suzanne is saying, are merely objects of parent’s (usually/always moms) distress is completely wrong and dangerous. Yet so many people say, “But, Ben, Autism Speaks has raised so much money (that they’ve raised money-can’t argue with it-what they’ve done with the money) and they have so many celebrities who endorse them.” Well videotape my swimsuit areas and call me a Scientologist! I believe in them!

                Now let’s assume, for the sake of argument, that you are a hardcore fanatical fan of Autism Speaks, who admits they have flaws while exhibiting redeeming qualities: you ask me Is there something to fear? Yes! I fear for you! Any organization that spreads stigma works against the best interest and the needs of autistics and the people who love them. Whether you know it or not, Autism Speaks’ corrosiveness affects you as it does your loved ones and time is running out for many people with autism to adjust to the world so they don’t have to live in such great comfort. When you’re done playing dollhouse with miss ballerina and ready to start a vocation though I’ll be happy to hear from you.

Words for Two Fellow Schoolmates

            I would like to give this post to honor two University of Central Missouri students, Jennifer Reeder and Erin Hook, who were killed in a car wreck near Clinton, Missouri on March 1, 2014. Hook was 20-years old, and Reeder was 19, four and five years younger than I am. I just thought I’d share the feelings that have been embedded in me for what seems like too long, and then wrap it up to why I’m doing this post so everyone please be patient with me. 

It just deeply saddens me and I got no sleep last night as I heard about it. I did not know these girls personally, but the thought of the discovery of those dead bodies on just a seemingly normal day for their friends, family, parents, and the like, and knowing that will stick to them for the rest of their lives simply left me tear stricken. Lying awake in bed, googling the names, feeling frustrated when a video of the deaths would not come up and saying, Just come on, feeling bad as my roommate woke to ask if I was ok. I know many good, true, kind-hearted people who I love to the end of my life and lives beyond who are affected by this tragedy, and wished simply that I could of hugged or held some in my arms, and learned that some more of my closest friends knew these girls, and I have spoken to one and gotten to do some of today, and agreed with him to go to a vigil for them with him, hosted by their sorority Alpha Sigma Alpha. I can only imagine their own parents running into friends not seen for so long, and not being able to catch up without such a profound tragedy being relevant to the talk. Anyway, I want all people reading this if they have any connection to the deep tragedy to know that you are in my thoughts, and everything I do from waking up, and it is the people I love who are the reason I do anything I think worthwhile. So if I can give a hand, an ear, an arm, or anything at anything to anyone I will and ask no one to feel any reservations of asking. Please do not worry about me. I am much more at ease helping anyone I can with this, and thinking of them and the girls in all I do, and I have much to do, but I cannot speak for everyone in the people affected so please know if this helps even in the slightest that I think of all of you, who I know and not. 

At this point I personally give much gratitude to the Buddha as usual, as I owe many of my own beliefs to him, such as the belief that love is what makes our time together worthwhile and possible, and creates the strong connection from compassion that is the greatest source of healing one’s being. Hopefully, just hopefully, all can find their source of strength as I talk about finding mine in all my writings hoping to move others to do the same. 

Three Things Autism Cure Culture Does to Individuals and Families

Today’s world is bombarded by ‘autistic people’ and parents who claim they have been ‘cured’ or ‘recovered’ by diets, sauna therapies, and other home grown remedies created by parents with little or no training on autism. Late thirties Raun Kaufman claims his parents home-grown play-based therapy helped cure him of his autism and has made a fortune on his group Autism Therapy Association while some doctor’s question whether or not Raun was ever autistic at all. Jenny McCarthy, using her credentials gained from her being a Playboy centerfold, claims her son was cured after she gave him a chelatin diet. Her claims that vaccines cause autism has caused thousands of parents to endanger and lose their children who subsequently were not vaccinated. Anti-vaccine activists have ‘edited’ MRI vaccine inventor Paul A. Offit’s Wikipedia page to say he studied at a pig farm in Toad Suck, Arkansas when in fact he has a bachelor’s degree from Tufts University and an M.D. from the University of Maryland (Jenny meanwhile proudly claims she has her degree from the University of Google). Offit’s opponents have subsequently sent him death threats over the phone and envelopes filled with anthrax. When I check my e-mails I will sometimes see e-mails titled Autism Lawsuits in my spam folder, against doctor’s who administer vaccines in America’s already crumbling health care system. Cannabis magazine featured on it's front page an article called Autism and Cannabis: How Prohibition Makes it Tough on Parents. Maybe the thousands of autistic people who have ended up on drugs have developed better social skills. 

Today many parents of autistic people feel guilt when their own child doesn’t develop as he/she should and struggle financially and emotionally to get their children the therapies necessary to do so.

                When put under a magnifying glass, maybe we should ask what these stories of ‘amazing recoveries’ really do? For starters, here’s a few things you may have overlooked:

1)      Autistic people are maimed, injured, and even killed by applied ‘cures.’ An eight-year old autistic boy, Terrence Cottel Jr. was put under a blanket while a minister performed an exorcism to vanquish the demon supposedly causing his autism. What this accomplished was Terrence suffocated under the blanket and subsequently died. Despite widespread outrage over what the exorcism caused, the minister was given a slap on the wrist.

2)      Increased guilt among parents of autistic children. When parents see these ‘cures’ shown in the media, the wonder Why can’t I do the same? This guilt, already out of control by their children’s struggles, can make it hard for parents to give their autistic and non-autistic children the love and support they need to grow and develop.

3)      Increased financial stress. Autism services, not provided by health insurance or schools, are expensive and difficult for parents to acquire. Yet many gullible and unsuspecting parents, many with little education or income, will pay heavy for ‘therapies’ that supposedly cure their children’s autism.

Clearly it is questionable whether the cure autism culture has any real merit. Moreover, Jenny McCarthy and Raun Kaufman clearly ignore the facts that autistic people are fully human with strengths, feelings, and talents like anyone else. For more information on the subject, you can check out Paul Offit’s book Autism’s False Prophets, which unlike Jenny McCarthy’s and Raun Kaufman’s writings, is based off extensive research and training and does not rely on sex appeal, Wikipedia abuse, or death threats to doctors.

Will Autism Services Really Cost Us More?

…Freedom is much cheaper than oppression.

                                                -Desmond Tutu

                You may have heard of the idea of autism being covered by health insurance and them all being guaranteed the right supports in school. You will undoubtedly have heard one thing involved in it: costs! 

                The notion that providing for or granting equality to certain groups of people has been used against every disenfranchised group whether gays, blacks, women, Filipinos-just about everyone you can think of. With that, here’s a radical idea I could suggest: maybe it would be more expensive to NOT provide autistic people with equal access to society.

               

                It’s no secret that autistic people suffer from a wide range of social and cultural problems: depression, drug abuse, alcoholism, crime, unemployment, and underemployment. Over the long term what all these can cost our society can amount to having to pay more than it would cost to pay for inclusion that could prevent so many of these things. Unemployment and underemployment lower our per capita gain. Autistic people too often possess all the professional skills necessary for many jobs, which grow businesses creating jobs, yet lack the social skills which autism therapies could rectify. Furthermore, when people abuse drugs and alcohol, it costs our government a lot to prosecute, imprison, and convict them. 

The biggest myth ever proposed by politicians is that autism insurance coverage would cost insurance companies. Yet the fact is the very things they can provide would actually prevent health problems among autistics that arise from lack of social development among autistics such as lack of independence leading to poorer hygiene and lack of good diet that often leads to diabetes and other health complications. Stress and lack of toilet training resulting from unaddressed autism can lead to bladder problems and urinary infections. Drug and alcohol abuse arise as a result of low self-esteem due to lack of friends due to lack of social development. To be fair, being against autism exclusion is not being against budget cuts. It’s merely against budget cuts that don’t include them. Providing for anyone is costly but a question that has to be asked is Why are some people paid for while others are not. Another question that deserves to be answered or at least be food for thought, is Would we rather pay more to keep a person out, or less to give them access to society. It seems that the government doesn’t want to pay dues to the autistic rights movement it’s spent years opposing, not money.