Autism Speaks Many Languages, Fear Isn’t One of Them

So recently I watched a new Autism documentary called “Sounding the Alarm: Battling the Autism Epidemic” or as I like to call it, a 57 minute commercial for Autism Speaks’ vile agenda. Now I stumbled upon a trailer for the documentary on Facebook a few days ago and already I felt uneasy with the tone of the trailer. The title itself was enough to turn my stomach a bit. First of all, the words “Autism” and “Epidemic” should NEVER be used in the same sentence. It also shouldn’t be in the same sentence as “Disease”. A disease shortens ones life expectancy has a negative impact on ones way of living. Being Autistic may make it difficult a times for me to connect with people but my way of living is no different than that of a healthy person. Now the point of this movie is to shed light on a big problem in this country and that is the fact that not every single state has insurance coverage for service for those on the spectrum such as ABA therapy and other early intervention services. The problem with this documentary/57 minute public service announcement is that at some points of this documentary it conveys this problem using the same fear tactics used by Autism Speaks. As a matter of fact, members of Autism Speaks including Suzanne Wright have a decent amount of airtime in this documentary. 

So the documentary starts off with Suzanne Wright of Autism Speaks telling the sob story of her perfect angel of a grandson who at the age of two gets snared by the devil she calls Autism. This sob story is used to segway into the heart of this documentary which is the lack of insurance coverage for Autism services in certain states. The movie starts off by introducing three families who have children on the spectrum and their struggle to get services covered by insurance or those who lost coverage the moment their child got diagnosed. This segment of the film is solid as it exposes a very serious problem in our country around the issue of funding. As many know, Autism research and services are severely underfunded and in certain states where insurance is lacking, there is a major divide between those who can afford these services out of pocket and families who are left to their own devices.  There is also mention of a family who has to move from their home state just to get coverage for their son who’s on the spectrum. This portion of the film alone would have worked but then it segways into various other stories of families with children on the severe end of the spectrum whose lives look like the typical doom and gloom scenario and all the various scare tactics used by Autism Speaks to get people to look at this as a crisis. It also mentions how the number of cases of Autism are growing by the year, the type of talk that suggests that if nothing is done then the ‘Autism Epidemic” will come to a house near you and steal your perfect child”.

Now this documentary isn’t a complete shit show and has its high and lows so in no particular order, let’s list the good and the bad of this 57 minute public service announcement.

The Good Points:

1. This documentary does a great job of exposing the problem of insurance. A family shouldn’t have to move halfway across the country just to get the coverage they need for their child. Every family should have the right to coverage for a child on the spectrum. These early intervention therapies are probably more expensive than a college education at an Ivy League and no family should ever have to shell out that kind of money just so that their child has a fighting chance. It should also be noted that the government doesn’t provide coverage for certain therapies because they don’t fit the criteria for a “treatment”.

2. 22 seems to be a magic number but not in a good way. Children who do get various supports and services from schools and other programs can only get these services until the age of 22, after that their families must turn to the state and while a person with a severe case of Autism can easily have a good enough case to get aid from the state, those who are on the high functioning end of the spectrum will have a harder time which brings me to an unfortunate yet very common phenomenon.

3. Falling through the cracks is what we call this phenomenon. Your level of functioning heavily influences the type of services you get from your state. The state is very stingy and really doesn’t want to spend money on your child, especially if they don’t look the part on the surface. Many are turned away because their child doesn’t “fit the criteria” for someone who should get aid even though the genuinely have trouble with things others wouldn’t

4. As people on the spectrum get older, finding group homes/respite care/independent living can be tricky. Leaving your child in the care of a perfect stranger is pretty difficult and for those who have a child on the spectrum that difficulty grows tenfold. Finding people who are patient enough to work with your child can be difficult as abuse is pretty prevalent in environments like that.

5. Employment for those on the spectrum can be tricky because you need an environment that can give an individual the necessary accommodations to thrive. The documentary does mention a father of a son on the spectrum who started his own car wash which is run by his son and others on the spectrum. With the right supports they all excel at their jobs and they all are every happy. I wish the film focused on more stuff like that because everyone needs to know how well off someone on the spectrum is when you cater to what works for them.

6. The film also did a nice job of mentioning at least one person on the spectrum who is learning to be independent using skills learned from a life skills class.

The Bad Points:

1. After the film did a good job of exploring some of the flaws in our insurance system, it then goes into other stories which have no place except to spread fear and show Autism as a struggle and something devastating. I’m not saying raising a child on the spectrum is easy, far from it but it is only doom and gloom if you make it that way. They also spent spent too much time on children who died as a result of wandering off, particularly Avonte Oquendo. Again, I acknowledge this is a problem but it adds to that “doom and gloom” factor

2. Autism Speaks needs to stop using this language of fear. Words such as “epidemic” “disease”, and “unforeseen medical disaster”  are pretty disheartening. Yes the cases of Autism have grown over the years but make no mistake, Autism has been around since the dawn of time. The only reason why the number of cases of Autism are growing is because doctors have gotten better at diagnosing it. Cases that we used to shrug off as simple mental retardation are now fall under criteria for a spectrum disorder. To say that Autism is an epidemic is VERY far from the truth.  The growth in people being diagnosed is simply a result of the evolution of science and that number will only grow but not because of any crazy theories you conjure.

3. Speaking of crazy theories, I don’t think we’ll ever know what causes Autism. We may go to our graves never knowing what causes Autism. There was too much talk of theories and cures and not enough on acceptance. Beyond early intervention and various ABA therapies there really isn’t much we can do. Love and acceptance can go a long way.

Now, if you kept the few stories that covered the problems with our insurance system, dropped the few doom and gloom stories that had nothing to do with lack of access, dropped the segment on these crazy theories and put a better emphasis on the positive results of giving people on the spectrum the right supports and therapies such as a path to independence for example, the guys who work at the car wash making a living and being happy as a result, talking more about the adult learning to be independent, catching a bus on his own and how better funding could get him the proper training past the age of 22, Autism Speaks would not only have a likable documentary/57 minute public service announcement, people would be more compelled to fund these supports. Yes, the fact that families have to move across the state just to get proper funding is definitely a crisis. The fact that support for a person on the spectrum stops a 22 is a crisis. The fact that families have to shell out the equivalent of a four year run at Princeton for Early Intervention therapies for their child is a crisis but Autism is NOT a crisis or an epidemic or a disease. It is a different way of living that we need to fuel our resources into learning to accommodate because let’s face it, we’re not finding a cause anytime soon.

At some point in this documentary, one of the mothers states that “Autism speaks no language” I beg to differ, Autism speaks every language except the language of fear. I understand that there is a push to get the necessary funding for Autism but you can’t scare the government into pissing money into this. It is possible to get the government to fund the supports that many families desperately need but we have to approach it differently. Instead of showing people scenarios of doom and gloom, show people the good that comes from giving those on the spectrum the right supports. Show them the guy that can take the bus on his own thanks to training or the young adults that can smile knowing that they’re working for a living in an environment that engineered to bring out their strengths, show them more of the milestones a child can reach with the proper ABA therapies but if you insist on showing congress a picture of doom and gloom that involves kicking, screaming, punching, kicking and then proceed to use the words “epidemic” “disease” “cure” and “eliminate this” then you can kiss all hopes of funding good bye. Congress cares way more about results, they don’t need to be coerced in to giving money by constantly being faced with stories of doom and gloom. They want to see the good of what they’re funding so they know that their money aids in giving people on the spectrum the tools to make a difference. The sooner we speak a different language while talking to congress, the better. Stay classy people

 

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