Project we are Autism and Aspergers: A Social Era for Autism

The "Social Era”, as Nilofer Merchant coined it is proving that we have come a long ways in how we interact with people. The early days of social media was about connection and engagement, than came measuring our value by the number of friends, and now our influence will be measure by how engaged we are. While many scramble to learn these skills and gain audiences there is a growing subgroup of people who are becoming quite proficient at the art of connection. People with Autism and Aspergers, a group not normally known for being connectors are gaining doorways into talking with folks online.

For people who have Autism Spectrum Disorder (ASD), myself included, the world of interaction can be a challenge. Many have gone their whole lives cut off from the real world either by speech barriers or the absence of Neurological typical social skills. With 1 out of 88 people now diagnosed with ASD it is clear this is starting to look more like a phenomenon than a disorder. Mentioned by Autism Activist and Autistic person Temple Grandin  the rise of internet age may have come from people with #ASD people. Many could argue this but what is clear is people ASD are gaining ground in the Social Era.

Carly Fleischmann , a non-verbal autistic woman from Toronto, for example, is building a world of relationships that has reached 51,000 followers. Many of these followers also share Autistic Spectrum Disorder and are discovering ways to break down walls from both socializing and the belief that ASD is about being intellectually disabled. With the click of a button they are expressing ideas, music and even art they've created to let others knows what they have been trying to say all along.

How is it that so many people with Autism Spectrum Disorder are excelling is social media? They can be the maven of mavens. When they get fixed on something that interest them they (me included) have to know everything about how it works, as well as how they can make it fit into an pattern that is efficient. Sound familiar tech people? Dr. Grandin believes the ASD gene is the origin of creativity and problem solving and may be the reason why we have advance so for the last 200,000 years.

Another example is watching some of the people I work with that have been open enough to share that they have Autism Spectrum Disorder. After talking with a friend about how their social media management was working when she started a few weeks earlier, she was feeling disappointed. When I asked her what the problem was, she said “I can’t get past 32”.  I said, “32 followers?” She said “no 32.2k followers, and my About.me still won’t get past 10k a week. Maybe there is something I am saying that is keeping everyone else away?” The look on my face was priceless. Later that same friend had a total stranger come up and thank them for a blog they wrote.

While all people with Autism Spectrum Disorder vary in functionality and skills it is clear they are finding it much easier to connect. They are making friends with people Globally and some seem to be quite good at building rapport without the use of a real voice. It will be interesting to see what the future holds but I am happy to see so many with ASD gain ground and find their place in the Social ERA.

 
 

 Christopher G. Brownlee 

 Follow on Twitter: @ChristoB78 

Project: We are Autism and Aspergers; we can speak

Project We are Autism and Aspergers is us speaking with our own voice, telling the world who we are and telling our government how our lives can be better improved, with our own words. When we as a community of people stay silent we are doing an injustice to ourselves. Not all of us are capable of speaking for ourselves, some draw and some have trusted advocates and family members who speak for them and it is time that we stand up and let the world know that we are human beings.This community has had a stigma and portrait painted of them that is completely inaccurate and organizations like Autism Speaks have done nothing but increase the reputation of brokenness and inferiority. Project We are Autism and Aspergers is about changing the face of who we are from tragic disasters to human beings.

What would you tell the world if you spoke out for yourself? What would you say to the government to improve the lives of spectrum people? What is life like for you living as a spectrum person? This is our story to tell and it should be told by the very people who live their lives as Autistic and Asperger people. Our stories and our needs should not come through the voices of an outside organization who views us as a mystery, a puzzle, and a mess. Our stories should come from the reality of who we are by ourselves and the people who love and know us. It is our responsibility to stand up for our own needs and our own lives.

Allowing an organization like Autism Speaks to continue their voice in place of us will only  allow for the on going issues to continue that our community faces daily:

1. Media’s continual use of the word “suffering” as a description of our community
2. Media’s assumption that every school shooting should be blamed on Aspergers
3. We are broken
4. We are medical disaster
5. We are unable of making decisions that are healthy for our community therefore we need to be spoken for.
6. Job discrimination.
7. Assisted and non-assisted living programs for spectrum people.
8. Health care coverage for Autistic related services.
9. Funds for families requiring services for the young ones.
10. Spending more time working with teachers and ABA therapist for those of us higher on the spectrum who can offer valuable information for the ones who are not where we are.

Autism Speaks cannot bring to the table the life experience of a spectrum person and they have no interest in doing so. They are an organization that runs like a corporation utilizing funds in such a questionable fashion and it is our opinion they should be investigated by Congress. We feel that the picture painted by them of our community has made us look less than human and therefore undeserving of equal rights with dignity and respect. Silencing their voice and allowing our own words to ring through the media and the halls of congress is the only way to reverse the years of tainted and dishonest chatter about who we are and what we need. The last thing we need is another awareness campaign, we deserve and are entitled to acceptance for the unique individuals that we are.

Project We are Autism and Aspergers will run for the next 30 days. We invite you to write to us about who you are and what we as a community needs. You can submit photos, drawings, statements and videos. Videos can be done directly from our site using a mobile device www.drlorenabrownlee.com scroll over videos click the human project and record whatever you would like or you can make submissions through lorenabrownlee@gmail.com. It is time to change the face of our community from broken mysteries to human beings.

We will also be running the Project through social media. Feel free to take a photo from below and use it as a banner or icon image to invite other spectrum people to join the movement of changing the face of who we are. Use hashtags #ProjectAutism #ProjectAspergers #WeAreAutism #WeAreAspergers or #Project we are #Autism and #Aspergers and follow us on Twitter @brownlee_dr Facebook Dr. Lorena Brownlee or Google Plus +LorenaBrownleeDr 

 

#AutismSpeaks does not Speak for Me

Autism Speaks in 2013 spent less than 14% of all donations on Autistic people and their families, the rest they pocketed as compensation. See for yourself: Form 990 2013. This compensation is 5x the amount that a public relations person in a non charitable organization would receive as a salary and money that could be used for the principle reason it was donated in the first place, Autism needs. Autism Speaks only gives cents off every dollar to Autism related issues.

Autism Speaks claims to be a voice for the voiceless but their ultimate goal is the continual question asking of why people are born this way instead of investing into the people they serve by therapies that would better the human lives of the Autistic community. Why would anyone want to give money to an organization using the people they “serve” as a meal ticket. We are not taking it anymore, not all Autistic people are nonverbal and we have the ability to speak for ourselves.We are not broken, busted, a puzzle, or disaster we are human beings and your lack of respect for our community both verbally and in actions leads us to ask you to stop. Stop lying to the world that you are advocates for Autism, stop stealing money people who could use that money to feed their own families and doing this in the name of Autism. Stop speaking for us because you don’t.

We do not need awareness as you like to campaign we need acceptance. The picture that you have painted to us in the media describes a group of people that are neither able to care for themselves or are disastrous cases amongst humanity and we are not either one of those things. The spectrum being as wide ranging as it is, requires a person to person look at what the needs of each individual would require to have and maintain a normal life. We are not behaviorally challenged or your project to fix, we are human beings who are entitled to all the human rights declared in the Universal Declaration of Human Rights. We are entitled to our dignity and respect, we are your fellow human being and demand to be treated as equals.

Your inability to except us yourselves should be an example to the public as to whom you actually serve as an organization, your wallet. From your board member to your blue light campaign (The owner of Home Depot is a Board Member of Autism Speaks and is the seller of the Blue Light) all that money returns to you and you are doing a disservice and injustice to the Autistic community. We estimate that in 2013 $57,000,000 went into the pockets of employees board members, staff and contracted personnel. They grossed $65,992,738.

#AutismSpeaks, I am not a Medical Disaster

Last night I watched the Documentary, Sounding the Alarm, Battling the Autism Epidemic. I as a spectrum person walked away with this one thought, If you are my advocate I am in big trouble. Using statements like Autism is a medical disaster or describing us as troubled, difficult or even ensuing family troubles conveys the statement to people like myself that you do not favor our kind. A lot of us, spectrum people, go on to do many good things such as acting, writing, or activism. The spectrum is so wide ranging that there are even a few of us you do not know about whom have gone onto become Doctors, Lawyers and Engineers. The bottom line is that we are human being and deserve to be referred to as such.

I completely understand the struggle that you as Neurologically Typical people have in understanding us as people in what we think and how we feel. I also understand how difficult it must be for you as Neurologically Typical people to deal with one of our meltdowns or inability to communicate, perhaps adding one of us who are higher functioning to your staff would serve to enlighten your understanding and encourage you to refrain from using such derogatory language to describe what many of us as adults find as an asset to who we are and become. When you speak about us in such a negative fashion you only further the struggle we have with mainstream media and the very intolerable way they describe us as suffering beings.

I am not suffering, nor am I medical disaster or troubled person and many spectrum individuals I know are not either. We will never do things the way you do them nor will we ever be just like you but we are human beings who deserve to be treated with respect and dignity in both speech and actions. We stand in agreement with you that Congress does need to take up our case and Insurance companies do need to serve our families better. However,  if you are going to continue advocating for us and suggesting a governmental office for an Autism Zar, perhaps really taking the time to speak to higher functioning spectrum people and understanding our position in the world from the very different perspective we hold, would serve all far more greater than to assume all things about us from Neurologically Typical standpoint. After all this is about advocating for spectrum people not just the Neurologically Typical family members. .

I am a White Mom and my Oldest Son is Black

 

When I sat down to write this I thought, wow, where do I begin as this story tells a tale of racism from every direction. I will say upfront it is one thing to have a child of the same ethnicity as the parents and have family support, while dealing with the outside world and social issues like racism then it is to have a mother whose ethnicity is different than the child’s without family support while dealing with those same world and social issues. There is a balancing act that takes place raising your child in both worlds while receiving verbal abuse from both sides.

From the day I told my family I was pregnant, that was it. I lost my relationship with all my family including my grandparents. My mother a minister in a church asked me a question you would never in a million years think a woman of the cloth would ask proceeded by a statement that completely contradicted every belief in the religious foundation she tried to impart to me, “Are you getting an abortion?” “You are not planning on having that nigger baby”. I will never forget that nauseated feeling in thepit of my stomach after hearing her say that. My grandmother did not say anything much different, “A Schvartze (Yiddish derogatory slang for Black person) will not be sitting at this table”. You think a survivor of genocide would have thought about the words coming out of her mouth, but no such luck. So I am separated from my family to this day and have no relationship with them.

Racism did not just come through my family, I had black people tell me I could not raise a black child properly because I was white. His biological father’s family wanted nothing to do with him, believing he would inevitably be too white to understand them. When my son was a teenager asking many questions about his father’s side of the family he went to see them, to meet them, but they stuck to that same belief that he was just too white and did not fit in. Sadly they do not speak to him nor do they want to be a part of his life in any way shape or form and I know this hurt him even though he never speaks of his short time there.

What was supposed to be a yearlong venture of self-discovery and development of family ties to a father my son was so eager to know turned into disappointment and rejection. My son’s biological father’s side of the family has deep Louisiana routes, they are a close family that go to church together and speak on the phone constantly. The boys also got into a lot of trouble and the trouble cannot be chalked up to racism because they were causing it. DUI’s, guns, and drugs, they invited the trouble. 

Now, my son did have his own challenges which he presented to a family that was very unfamiliar to him, he is on the autism spectrum he did not speak until he was 4 and does need to be reminded to do things like clean a room. He did have issues with social situations but he always had friends, it just took him longer to warm up to people. These things did not make sense to the family and all the social issues were turned into racial problems with the statement “he is just too white”. He lasted two and a half months there out of the 12 months planned. I drove up and took him back home, and I always took him everywhere with me from that point on.

Driving through the south brought unexpected racial issues for a person who was slightly naive. 20 years ago the attitude towards mixed children was still ignorant to say the least. I pushed my son’s head down through the towns we drove so people couldn’t see him as a rest stop interaction with the locals taught me we were not welcome. Needless to say I had to teach him from a little child that the world would see him different and that he needed to be careful with his behavior, dress and interaction with police. Had I not taught him those things he would have been ill equipped to be in a world not as accepting of the African American community and from my experience it did not matter whether we lived in a rich or poor community the behavior towards African Americans was still the same.

Oh the teenage years. Let’s be honest these are not easy times for any child. Bodies are changing, they are figuring themselves out, they are grumpy and in my son’s case depressed. Drugs, girls, parties and worries all come with these years and for my child the reminder, you are black and you need to remember that when you are late coming home, or out with your friends, or even in who you choose to date because some families will not allow you to date their daughter. Everything I am writing to you occurred in one way or another.

My son hated school and ditched a lot. One afternoon I came home from work early to a phone call from the Marin County Police Department telling me, “We have your son. He was reported as a burglar." Upon arriving at our home I ask him in front of the police, "what were you doing?” He said he was sitting on the curb. I said, "that’s it?" I looked at the officer and asked, "is that where you found him?" He said, “yes". So I asked how that was a burglar? Officer said, "ma’am the woman who made the call was older. You know how it is." I asked, “What do you mean know how it is? Oh you mean she was racist? She saw a black child and marked him as a burglar and you in turn picked him up to appease her idea?" Officer’s reply, "well ma’am now that I have seen you I know it is all ok and he was just having a hard morning.” My response, “So if I had been a black mother this would have ended different?" He had no reply. We had several incidents that ended the very same way during those teenage years.

To make a long story short because the reality is I could tell you story after story about racism be it through me, my son, or others I know, I did not raise my son to root his identity in a color. I raised my son to root his identity in humanity and being human, to respect those around him even if they could not dig deep enough into their souls to return that same dignity and respect. At the end of the day we are all human beings regardless of what is on the outside in each of us beats a heart needing and requiring human connection. 

Do you not find it odd that the biggest and greatest challenge for mankind to overcome is the differences in people whether they are from Ferguson, Palestine or Sudan? This is the global challenge, acceptance and freedom. Now, we can continue to be angry about racism, or we can come together as humans in a great campaign for humanity and meet each other through interactions of peace to iron out one of history’s greatest challenges, communication through words. This is the key, and can change the course of history for the next generation because your voice is the greatest weapon you possess.