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We are so lucky to be blessed with the opportunity to have a guest blog post by Kpana Kpoto of Sailing Autisic Seas.  I remember when I first learned that my son was on the autism spectrum back in 2011. Coming from an African and Caribbean background, I did not know anyone else with autism. Honestly, it felt isolating. It took me months before I could openly discuss my son’s diagnosis. My inability to talk about it was not because I was ashamed but because I was grieving the dreams that I had for him when he was born. Soon enough I realized that I had to shake myself out of this fog and start getting him the help that he needed. But what happens if a parent never shakes them self out of this fog? What happens when a parent is ashamed to tell others that their child is on the autism spectrum? I know in the black community we don’t like to talk much about mental health and developmental disabilities. Still something has to be done to eradicate the stigma that comes with developmental disabilities, such as autism in our community. What we have to realize is that not talking about it does not mean that it does not exist. The stigma surrounding autism can lead to a parent being in denial when they notice that their child is not developing typically. It can lead to a parent overlooking the signs that something is wrong and overlooking the importance of having their child evaluated. We already know how important early detection is. We know the difference early intervention can make in the life of a child who is delayed developmentally. So how can we reduce the stigma surrounding autism? Here are two ways that come to mind: Educate: There is a lot of awareness about autism but I am not sure that people really understand what it is. According to the Centers for Disease Control (CDC), “Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges.” I like to stress the word spectrum and point out that autism presents itself differently in each individual. Like we always say in the autism community, when you see one person with autism you have seen one person with autism. Besides helping others to understand what autism is, it is also important to continue awareness campaigns not just in April but year round. It is important because awareness can lead to acceptance. This is what families like mine want. I want to know that my child is not seen as a second class citizen. Advocate: As parents of children on the autism spectrum, we can’t afford to be quiet about it. The stakes are too high. We need to speak up and keep the pressure on our legislators to enact meaningful laws that can bring autism insurance to all 50 states. We need to speak up so that the process to get the Medicaid waiver is not so complex and confusing to parents. We need to speak up about special education and ensure that our children’s rights under IDEA are not violated. We need to speak up to stop bullying against people with autism. We need to speak up to bring more awareness to wandering. Too many of our children are dying. About our Guest Author: Kpana Kpoto  I am wearing many hats these days. I am a special needs advocate, “Naavigator” (Parent Mentor) with the National Autism Association- NY Chapter, and co-founder of the Bronx Parents Autism Support Circle. I recently began writing autism blog posts on the award winning Web site Black and Married With Kids.
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 Divorcing Autism: Gloria Perez-Stewart is a longtime activist and organizer as well as a disability advocate. She is from Austin, Texas but recently relocated to Los Angeles with her son. She works with clients nationwide to prepare them for IEPs, state and federal disability services, and connects them with attorneys if a matter cannot be settled using administrative means.  My Autistic Muslim Child I am a mother of a wonderful 6 year old autistic boy and a 7 year old wonderful “typical” girl. My family took it very hard when Amin was diagnosed with Autism, but we came to terms with it, and we have accepted Allah’s decree . There is goodness in everything, we just have to recognize it and make the best of it.  Autism Wonderland When my son, Norin was diagnosed with Autism at 2 1/2 years old. I felt like Alice, falling down the rabbit hole. Suddenly, I was in a new world. One I didn't understand; a world that fascinated and frightened me. Every day is a puzzle waiting to be solved: every day there is inspiration; every day a new wonder is revealed. This is our journey...  AUTISTIC HOYA: My name is Lydia Brown (Left). I am an Autistic and multiply-disabled activist, scholar, and writer. I regularly speak at conferences and universities on a variety of topics related to disability justice, disability and asexuality, violence against disabled people, and autistic cultural identity.  Lynne Soraya Lynne Soraya learned early the impact of expectations and the reality of the diversity of the human experience. A child with an unusual profile of skills and abilities, she was blessed with excellent teachers who saw through her differences and struggles to the ability beneath. It was only in adulthood, after years of difficulties and confusion, that she learned that her differences had a name: Asperger?s Syndrome, a form of autism.  Woman with Asperger's Who am I? I am a multiracial (African-American, European, and American Indian) woman diagnosed with Asperger Syndrome in 2010. Come walk on my journey with me through this blog, in which I will try to make sense of what this all means. For copies of the actual journal articles, you can contact us and we will get them to you. Just let us know which one     
Holly Robinson Peete talks about Having a teen on the Autism Spectrum Articles On April 4th, we introduced to you what we considered great Facebook Pages. They range from Informative to funny. We also posted a few stories... check out the Information below: Articles:GUEST BLOG POST: Autism Awareness Should Be About Action Not Reaction by @marimouth Sesame Street announces an Autism Initiative  Autism with a Glass of Wine: I'm an autism momma with a bit of an edge. My page is NOT 100% autism ~ it's also about fun, having a sense of humor and sharing experiences with eachother. As a parent to a child with special needs you can feel like an outsider -- like you have to be serious and all consuming of the condition.  Special Needs Network: Special Needs Network (SNN) is based in Los Angeles and is California’s leading grassroots autism advocacy organization. As a nonprofit organization, SNN was established to help low-income and underserved families faced with autism and other developmental disabilities. The organization focuses on raising public awareness, impacting public policy, increasing education and access to resources for families, children and adults.  Guest Blogger: Mari Nosal M.Ed. CECE Also Posted on the Mari Nosal Website Autism Awareness month is upon us. What is awareness all about? I will start by posting a definition of awareness that I have mentioned in another post as well. According to the Merriam Webster Encyclopedia, awareness means: “knowing that something (such as a situation, condition, or problem) exists.”Knowing that something exists, is not quite the same as fully supporting the issue. An example would be that we may see a homeless individual on the street and feel some empathy for there dilemma. This is an example of awareness of a situation. An individual may express concern for the homeless person’s situation, yet walk by them and go about their day. Rather then walking away, the individual who acts upon their concern and offers the individual a cup of coffee, etc. has learned from their level of awareness and used their knowledge to take action. This said, I will not focus on whether an individual wears the color blue, which I am aware many individuals connect with Autism Speaks and present negative connotations towards this group. I do not care if an individual is wearing blue, orange, gold, or polka dots for that matter. We may be surprised and find that the meaning of wearing blue for one individual during autism awareness month may not fit ones preconceived notions. I attempt to look beyond the colors and witness the individual’s actions and character as first and formost. In not doing so, I would be presenting myself in a judgmental fashion akin with grouping African Americans, Asians, Caucasians, Indians, etc. into a preconceived belief system. Example in point: All Asians are not smart, all Indians are not rich because of casinos, all African Americans do not play basketball, and all Caucasians are not money hungry baseball lovers. I would be acting in an archaic manner and stepping back into another century where prejudice ran rampant in harboring these notions. In the same fashion that “if we have worked with one autistic individual, we have worked with all autistic individuals” This is a phrase that I personally abhor as there is a reason it is called the autistic spectrum. It is called a spectrum because there are are many different degrees of autism. This ideology is an example of a preconceived notion as well. Individuals on the autistic spectrum present with varied personalities and needs, just like typically developing individuals do. To take the idea of preconceived notions a bit further. One may assume a color is symbolic for a group or belief. For another individual, that color may symbolize something totally different. I will continue to favor the color blue because it is symbolic of something very different in my eyes. For me, the color blue symbolizes promise. As I peer into the sky I see spring approaching after a gray dismal winter. I see a beautiful blue horizon that has taken on a distinctly sharper more vivid hue then was evident in the winter sky. While peering at the Spring sky, I see promise of green grass coming back to life, the return of birds tweeting outside my window. In conjunction with autism, I connect the blue horizon that extends for miles into the atmosphere and over the ocean with realization that the autistic spectrum knows no boundaries. As the horizon is spread across the whole world in areas where our eyes cannot peer, the autism spectrum holds secrets that we cannot see. It holds the secret to individuals futures that we cannot see. We do not have a crystal ball. i.e. a child that was not supposed to speak, ends up doing so, a child who’s parents were told to institutionalize them suddenly gains an awareness of their surroundings that no one expected, the child who was not supposed to toilet or self feed independently miraculously does so. As the horizon connects us all together although we are not aware of the activity on the other side of the world, our children have a future path that we are not aware of. As you can see, blue possesses a different meaning for me then it does for someone else. Lets get to know each other before making judgments. Focus on the advantages of autism awareness month. Breed awareness through your actions not preconceived notions. A color will not change the world but making a difference will. Help a family who is overtired from caring for children on the autism spectrum. Help the family do chores, watch their special needs child so they can get a few hours of uninterrupted rest or enjoy a cup of coffee alone at a restaurant. Help an adult on the spectrum who cannot drive by giving him a ride to work or elsewhere. Offer to help him or her compose a letter if they struggle with writing skills. Teach a parent support class, offer to teach life skills for free to transitioning young adults. These are mere examples of focusing on not only awareness but acceptance and education for the autism spectrum as well. Last but not least, do not stop with only making contributions during autism awareness month. Continue helping society to become accepting and a place where all on the spectrum can live, work, love and play 12 months of the year. For families and individuals affected by autism, autism awareness is a 24 – 7 life for them. The blue lights in the Empire State building, the rivers tinted blue, (or gold or purple for that matter) will dissipate and soon be a memory. Your efforts within the autism community will make a lasting impact however. Parents and individuals affected by autism will still be living with it after April is nothing but a mere memory. As families and individuals live with autism seven days a week, let’s make a pact to stay action oriented seven days a week as well. Keep your focus on the goal. When there is no more blue what will you do? Thank you and let’s start advocating. About our Guest Blogger: Mari Nosal M.Ed. CECE is a published author and focus on books pertaining to autism and Aspergers Syndrome. I have recently published a book with curriculum ideas for inclusive and multi age classrooms.  On April 3rd, we posted sites That will help determine diagnoses and overcoming the "What's next" feeling parents get... we also found a great blog post.
 April 2nd, we shared links from around the world. the goal was to showcase the Diversity of Autism Awareness. Here are the links and articles shared:
 This being World Autism Awareness Day, you will look around the web today and see a wealth of information regarding Autism . You will See Autism Speaks and "Light it up Blue" A LOT. You will then see follow up emails, Twitter posts and Memes telling you what's wrong with Autism Speaks and the Light it up Blue Campaign.
The argument is that Autism Speaks doesn't have a platform for actual people on the Autism Spectrum. The founders of Autism Speaks don't seem to assist people "on the ground" on the spectrum. I understand the argument. I also understand why people want to boycott the organization and their "Light it up Blue" campaign. The arguments I actually hear (without being yelled at) are valid and should be addressed. I don't engage because I don't believe I should put such effort in groups that don't put equal effort in people like me. Bay Area Proper (the area from SF-Stockton) doesn't have Autism Speaks or any "Mainstream" Autism organization. And realistically, if there was, People of Color rarely reap the benefits of such programs. The Mocha Autism Network was formed out of the need for resources for unrepresented communities. We are generally ignored by awareness groups, regardless of the cause. Autism isn't any different. Lack of diversity doesn't seem to be mentioned by either side. Black/Brown Communities are the least informed and most misdiagnosed. Our need for outreach AND information is crucial. The #RoyalBLueForAutismAwareness campaign was contacted by RealZetas.com, a media arm for Zeta Phi Beta Sorority, Incorporated, to help provide awareness throughout their Electronic Footprint and we accepted. #LightItUpBlue was added to maximize reach and awareness. Our communities know slogans and it will spark interest in the other facts we will provide. We heartily accept their assistance and support. We have all the time in the world to discuss the best course of action in providing information to the children that are missed by mainstream awareness groups. Please feel free to submit a piece or ask us questions. Monika Brooks Mocha Autism Network |
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