 Today is the last day of Autism Awareness Month. For the past 30 days, there have been articles, feature stories, and blog posts about autism. Every time I read one, I hoped that it would mention families like mine. But each time, I was disappointed. It appears as though Autism is only seen as having an effect on white families with means. But I know that is not true. My son is on the autism spectrum. We’re not white. We make do financially. So I decided to reach out to families like mine so that I could share our stories.
In March, I posted a survey to ask Moms of Color (Dads, too!) about their experiences raising a child on the spectrum. I’m a scientist by training so surveys are my go-to for capturing data. I posted the survey on social media venues and asked people to share in their networks. It’s a snowball sample not random, not population-based, not scientific research – just a mom who happens to be a scientist asking other moms questions. I received 16 responses from moms all over the country in a two-week period. I originally planned to follow-up with those who gave me permission in an email and get their pictures but I’m an autism mama and life got in my way. The responses I received were poignant, touching, wonderful stories of experiences along the road of families living with autism. These moms and dads had been through the wringer trying to get their children diagnosed and treated appropriately. People who did not consider themselves advocates in any way, shape, or form before autism touched their lives became advocates for their children. One mom said “before children I went along to get along but now I don’t care whose feathers I ruffle, as long as my son gets the help he needs!” Another has been led to a new career as a special educator because of her experiences. Current statistics from the CDC put the prevalence of children with Autism Spectrum Disorder (ASD) at 14.7 per 1000 children or roughly 1 in 68 children. On average, children with ASD are not diagnosed until after age 4, even though children can be diagnosed as early as age 2 (Source: http://www.cdc.gov/ncbddd/autism/data.html). Most of the families of color here were diagnosed between 18 months and 4 years old. However, a few were not diagnosed until elementary school age and one wasn’t diagnosed until age 16. Every parent knew that something was wrong but couldn’t quite put their finger on what it may be until the diagnosis was finalized. Many were told by pediatricians not to worry and to wait until the next check-up for evaluation.
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 Wake Up For Autism Information, Blog Standout post: "Autism ISN'T for Dummies" Spearheaded by Jodi Gomes, Wake Up For Autism is a great, informative site for parents and professionals alike.  Hope-Love-Autism.com Blog Standout Post: "A Little Kindness" Pam Malhi's Goal is to increase Autism Awarenes in the Asian/Asian American Community  Special Needs Network Advocacy, Training, Philanthropy Standout Post: "The Autism Journey" Special Needs Network’s mission is to raise public awareness of developmental disabilities and to impact public policy, while providing education and resources to families, children and adults.  Divorcing Autism Blog Standout Post: "Where I’m At This Weekend (And How I Keep Up With The Boy & His Staff Remotely)" Gloria Perez Stewart utilizes her blog to discuss how to be an Advocate, Law Student and Mother. All while working through Autism as a blended family.  Sailing Autistic Seas Advocacy, Blog, Information Standout Post "Autism Awareness: My Early Intervention Experience" Ms KP is without apology one of our favorites. She provides information as well as her own personal experiences.  Special-Ism
Information, Resources, Blog Standout Post: "Social Skills Groups 101" Special-Ism is an online publishing source chock full of professional blogs addressing the ‘Isms’ impacting children at home and in the classroom. Each and every article we publish features an ‘ism’ accompanied by professionally recommended solutions.  The Coffee Klatch Excellence in broadcasting for the special needs community. Empowering parents and educators with world renowned mental health and autism expert. Website: thecoffeeklatch.com  Paul Siebenthal (Aspienaut) Writer, Speaker, Advocate and Mentor. I work for NASA - New Autism Spectrum Awareness! Aspienaut - Wired Differently! Website: aspienaut.tumblr.com  Pam Malhi
_Raising awareness & acceptance for autism esp within the asian community Lets get talking about these issues & help others understand. #autism #asian #awareness Website: hope-love-autism.com  Tips to Make Mornings Easier Most families—especially those with children who have learning and attention issues—have trouble moving from home to school and other activities first thing in the morning. These tips can help you streamline your morning routines.  Ways to Address Low Self Esteem in Teens
Adolescence is a trying time under the best of circumstances. For teens with learning disabilities, the daily and life-long struggles of coping with their disability-related symptoms can be wearing and dispiriting. 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.  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. |
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