Let's Stop Using Fear as a Means of Awareness

To envision a world without Autism, is to envision a world without my son. I posted this article on my personal Facebook wall yesterday, and it drummed up a bit of discussion on eugenics, and Autism Speaks, and even a bit of politics. Obviously I posted the article on my personal wall, because I felt that my opinion is mine, not reflective of our Foundation as a whole, however I feel that there is merit to discussing it in a larger forum.


I also want to mention that I personally feel that using fear as a tactic to solicit support, funds, and/ or followers is the wrong tactic to use. Are the number of children being diagnosed with Autism increasing - yes. This isn't a reason to scare society into action. The numbers speak for themselves. We have to take action, and support families who care for those with Autism, we need to support families faced with any diagnosis. It can be lonely, and to use fear as a method of soliciting support leaves many feeling as though they need fixing. It feels dirty. Let's provide education behind the numbers. Let's truly make a case for what having Autism means, and let's be real about what it means for future generations. Let fear be an emotion that one chooses on their own, without being provoked into the emotion. I was scared of Autism, at first. I am not scared anymore. I choose to feel hope, I choose to look towards obtainable goals that will help my child succeed. There are moments of fear, but it is fear of the unknown... not of the diagnosis.

I truly believe Autism Speaks has desire to help families impacted by Autism. As stated on their website, they are "dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families." Their first priority is to research causes, prevention, treatments and a cure, and their secondary goal, and I assume, as a supplement to their first priority, is to increase awareness and advocate. While I want the future, and unborn generations to have an answer to what causes Autism, how to educate expectant parents on the causes and preventative measures to take for their unborn fetus, I can't help but to feel that there is a greater mission that is missing. Whether a part of Autism Speaks fundamental mission statement or not, there is more work to be done. By not addressing this missing link, I think that it leaves those affected currently by Autism feeling skeptical.

Currently 1 in 68 are diagnosed with Autism. As I stated before, the numbers are derived from statistics of children born prior to 2003.  Of those children, how are we, as a Country, going to help the caregivers and children prepare for their future? How are we, as a Country, going to prepare our greater population, for adults that are going to need additional help, accommodations, acceptance, awareness and support? I think what is missing from the Autism Speaks mission, that so many, including those with Autism want addressed, is help that is needed for those with Autism, now.

I don't want to cure my son, I want to help my son fit into a world that is circular, when his genetic make-up is square. I want for therapies and treatments to be accessible to our family, without fear of having to put a second mortgage on our home to pay for them. I want the world to understand my son, and accept him. You don't have to like him, you don't have to understand him, and you certainly don't have to pity him, just accept him for who he is, as you would require those around you to grant you the same respect.

I think that unfortunately, in raising awareness, and fighting for our loved one's, we choose words, and target individuals or organizations, that are controversial. We choose to use fear as our tactic. We say, let's cure these individuals, let's prevent this from happening to future generations, and it leaves those affected feeling as if they are second class. As if they are in a world where they don't truly belong, and are simply made to feel as something that everyone should be aware of, and not necessarily accepted.

I choose to believe that Autism Speaks is here to provide valuable resources to parents who are just diagnosed. They have wonderful toolkits, available for free, for any family member trying to understand Autism. I believe that they are here, to provide funds to researchers, in hopes of finding out why these numbers continue to increase exponentially, and how we can prevent further rise. 

I believe that is up to us - caregivers, family members, self-advocates, friends - to ensure that those who are living with Autism today, get the care, respect and inclusiveness they deserve, just as any other member of the human race deserves. We need to ensure that we promote acceptance and awareness, educate our community on the difference, and promote inclusive environments. We don't need to "Light it up Blue" to do that. We need to get out, we need to share our story. We need to promote self-advocacy, and most importantly, we need to listen. We need to ensure that our loved one's with Autism not only have a voice, but that their voice matters. 

I love that we live in a Country that supports our freedom of speech, that we are able to choose our beliefs. It is a right and a privilege. Let's ensure that we extend those same rights to those with disabilities.

 "Just because I can't speak, doesn't mean I have nothing to say."

What Does 1 in 68 Really Mean?

Educate, Include, Empower, Embrace

I sat down to write Part Two of our Disney Adventure, and found my fingers itching to write about the CDC's new report highlighting another rise in the number of children diagnosed with an Autism Spectrum Disorder. While Disney is always a fun topic, I think that it is going to have to take a backseat today.

Yesterday the CDC released a report indicating that 1 in 68 children are diagnosed with an Autism Spectrum Disorder. If you click the above link, I think you will be pleasantly surprised that their report offers hope, calls for more information, more awareness, more education, a plea for early diagnosis. It does not slap the epidemic stamp on our children, it does not induce fear, and iterates the need for clinicians to use developmental screening tools to monitor a child's development and to take note of deficiencies, to educate parents on early intervention tools available.

It is also important to understand that this report is based off of children 8 years of age, and from 11 ADDM sites. In addition, the results are based on data collected in 2010, meaning that the children in the study were 8 at the time the data was collected.

I feel that it is important to take from these numbers that children with Autism, adults with Autism, are all a part of our community. You know someone with Autism. You know a family affected by this diagnosis. It should now be considered a part of our society's norm. While I understand the need and the want to know the cause, we need to embrace the community it affects. We need to ensure that our community at large is educated, understands the need of the individual with Autism, and offer community support, inclusion, and opportunities, equal to those of their typical peers.

When C was first diagnosed I found myself scouring the web, searching for a cause, secretly hoping that I was not to blame. I prayed that I didn't "give" this to my son. My grief turned to guilt. I wasn't alone, my husband felt guilty too. We simultaneously reassured one another that we were not to blame, while searching for hidden truths to the suspicion about ourselves. We started down a dark path, until one day we realized obsessing over the "why" wasn't going to help C. We redirected our efforts. We began looking at interventions, therapies, tools and accommodations to help C thrive. We educated ourselves and our family. We are continuously learning when to take a risk and push C's comfort threshold, and when to simply let him be... him.

C  having Autism isn't scary, it isn't the end of the world, it simply is. We hear that we should strive for our children to be like their "typical" peers, but what does that really mean? Who defines typical. We need to help our children survive in their environment. We need to help our children cope with the enormity that the world is. We need to give strategies to them, to ensure that they are reaching their full potential, and pushing them to be more than that. While a "cure" sounds fantastic in theory, what are we curing?

1 in 68 is alarming. What does 1 in 68 mean? It is no longer a "Disorder" that is rare, it is no longer an anomaly. Autism is a reality. We need to continue to educate our communities. Autism Spectrum Disorder. It is not a disease. It is not communicable. It is not scary. Our children are not violent. Our children have feelings. Our children understand, more than many can even comprehend. Our children have rights. Our children have names. Our children aren't just Autism. Autism isn't our children.This is the face of a child with Autism.


Autism Awareness Month is right around the corner. What does that mean? It means educate your neighbors, your co-workers, your family and friends. Take a moment to raise awareness. Does your child or a loved one, or a friend's child have Autism, what about ADHD, Developmental Disability, Intellectual Disability, Down Syndrome, Epilepsy, Cerebral Palsy, Oppositional Defiance, the list goes on and on, but what I want you to take from this is to please, please help educate those who need help understanding. Reach out to those who need help, support, respite. Don't look at 1 in 68 as a sad number, see it as a reason to help fight for the rights and abilities of those who fit within the statistic.

For the full CDC Report : CDC Report

For information on Child Development Screening: Child Development Screening