Last week Suzanne Wright's (co-founder of Autism Speaks) "A Call for Action Plan" had the autism community in an uproar, myself included.
Autism Speaks has a history of painting autism with such a broad brush that it continually discriminates and disrespects a number of autistics that are nowhere near the description that they state.
For example, in 2009 they created a video that describes autism in their view. In the video, the ominous and menacing voice-over claims to be autism. It goes on to say the following:
"I am autism. I'm visible in your children. But if I can help it, I am invisible to you until it's too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, "Who will take care of my child after I die?" And the truth is, I'm still winning. And you're scared. And you should be. I am autism. You ignored me. That was a mistake."
You can watch the full video here.
To use such generalization is implying that Autism is the same across the board. It is not. When you meet one person with autism, you have met only one person with autism. Autism may be just one word, but autism cannot be defined by one word alone.
Yes, autism is exhausting, worrying, heart-wrenching, but it is also about triumphs and milestones and making huge accomplishments when others (like Autism Speaks) have handed down a life sentence of despair, pain, financial and marital ruin. For a family who has just received a diagnosis of ASD, watching videos like this or listening to Autism Speaks is dangerous. It can have them quickly sinking into an abyss of desperation when in fact, this isn't the whole picture at all. Instead of instilling fear into families lets instill stories of hope and perseverance.
By no means do I want to diminish the struggles that many families deal with on a daily basis with their autistic child. I know what it's like having a nonverbal child with behavioral issues. I know what it feels like having a child that is constantly screaming all day. I know what it's like to have a child that wants to take off his clothes all day and just stay in the bathtub. I know what it's like having daycare call advising you that they can no longer care for your child because he is just "too much to handle".
But I also know what it feels like to see this child develop; to have been blessed with therapists that have helped him to ease down on the screaming until it was a thing of the past. I also know what it feels like to see this child go to school and play with friends. Yes, he is in a special school for special needs kids but that doesn't make the quality of his life any less than ours.
And that is where my issues with Autism Speaks resides. I take great offence that they label my son as a burden. And they do because their belief is that Autism is the reason why "families split up, go broke and struggle through their days and years".
In her published commentary Suzanne Wright goes on to say this:
These families are not living. They are existing. Breathing -- yes. Eating -- yes. Sleeping -- maybe. Working -- most definitely -- 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child's next move. In despair. In fear of the future. This is autism.
You can read her full commentary here.
This isn't my autism nor does it represent a lot of the families that I work with. Again, while I do not want to mitigate the struggles that some families go through I also do not want to have an organization disrespecting and dehumanizing all families living with autism and more importantly autistic people themselves.
Our family's story with autism is just that, our story. It is just one side of the coin. It cannot be compared to any other family living with autism. While we may have similar struggles, we are all unique, with or without autism. And so should the representation of autistic people.
I don't ever want my son growing up thinking that he is a burden to his family or to society. I don't want him to think that his autism is the evil in him.
Because every time Autism Speaks uses negative words to describe autism, these same words are attacking human beings living with autism. Men and women, boys and girls who above all else, are worthy of dignity and respect not because they are autistic, but because they are fundamentally human beings before anything else.
ALSO ON HUFFPOST:
According to the most recent Centers for Disease Control and Prevention estimates, 1 in 68 children in the United States has an autism spectrum disorder, based on health and education records. That figure represents a significant increase from previous prevalence estimates, released in 2012, which estimated that 1 in 88 have an ASD.
Autism is roughly five times more common in boys than girls, according to CDC estimates. One in 42 boys have been identified with autism, compared to 1 in 189 girls. Children born to older parents are also more likely to have an ASD.
According to the NIH, early indicators include: No babbling or pointing by age 1, no single words by 16 months, poor eye contact, little to no smiling or other social responses and more. (Click here for more information from NIH.) The CDC says, "Health care providers will often use a questionnaire or other screening instrument to gather information about a child’s development and behavior. Some screening instruments rely solely on parent observations, while others rely on a combination of parent and doctor observations. If screening instruments indicate the possibility of an ASD, a more comprehensive evaluation is usually indicated.”
According to the Child Mind Institute both genetic and environmental factors could contribute.
Autism is treated with therapy, education plans and medication. Doctors and scientists say that early identification and intervention for children with an ASD can help them thrive in academically and socially in the future. There are still studies being done to find better treatments and perhaps one day, even a cure. A paper in Cell, a scientific journal, discussed a study with more insight into what could cure autism. The study found that feeding rats with similar symptoms to autism a gut bacteria called B. fragilis lead to an improvement in their behavior. "They became less anxious, communicated more with other mice, and showed less repetitive behavior,” according to the Atlantic.
Even when multiple vaccines are given to a child on the same day, they are still not at risk of developing autism.
Studies have also shown that if a child with an ASD has an identical twin, the other will be affected anywhere from 36-95 percent of the time.
There is an 83% chance of co-occurrence for developmental disorders and a 10% chance for psychiatric disorders. These disorders include Bipolar Disorder, Fragile X syndrome and Down syndrome according to the CDC.
Children whose language skills regress before they turn 3 have been found to have a higher risk of developing epilepsy.
The CDC recommends children be screened when the are 9, 18 and 24-30 months.
LOOK: This Is What Autism Looks Like Study Shows Big Leap In Autism Prevalence Autism Is Not a Parenting Fail
Follow Linda Mastroianni on Twitter: www.twitter.com/speaking_autism