How important is cause and cure to managing autism?
It’s not important at all! Regardless of the cause, families with an ASD family member must deal with day-to-day life.
Up until now, our dialogue about autism has been very one dimensional. As the days of hyper-focus on autism’s cause and cure seem to be fading into the sunset, our attention has shifted to focusing on methods to “treat” autism.
That is, the focus is on how to do therapy to help ease the burden of the person with ASD, but with the goal of having them become more like the rest of the world so they experience less friction in life, rather than adjusting the expectations, demands and requirements which surround them.
There is a certain arrogance, and a definite misconception in the idea that “they” need to become like “us” to manage their autism.
The focus has been on changing those on the spectrum as if they are somehow living syncopated lives, unable to get into the same rhythm as the rest of the world. (Click here to read more about What is Autism? Limitations Redefined.)
Often, they are viewed as the square peg trying ineffectively to fit into the round hole, without serious effort on the part of the rest of us to make the whole fit the peg. The reality is that the discourse should be multidimensional.
“Either way, the conversation has been very one dimensional, and limited in its perspective”
If there are round and square pegs and holes, and the individual with autism is the square peg which traditionally doesn’t fit the round hole, perhaps we can shift so that the hole is large enough to accommodate the square, or even swap roles, allowing those on the spectrum to be the round peg which can easily slide into the existing square hole, maintaining its natural shape, although that shape is not the same.
Either way, the conversation has been very one dimensional, and limited in its perspective; the influence of the family on the individual and the individual on the family is ignored for the most part. The influence of people with ASD on the culture and the influence of the culture on the individual with ASD is rarely spoken about or even considered a factor!
Everyone Knows Someone
Here’s a news flash! Autism is something that impacts us all!
Almost everyone now knows someone, or knows of someone whose child is on the spectrum. But for many, that person is far enough removed from our daily lives that we are not really impacted beyond having our sympathy triggered for the child and their parents.
Others of us have closer relationships with those with ASD, and that shapes our lives in many ways. If we have a parent on the spectrum, we are influenced and raised with autism as one of the filters that guides how we interact with our world. Sibling struggles are legendary among the brothers and sisters of those on the spectrum. (Click here to read more about how The Time for Autism Awareness is Past; The Time for Autism Appreciation is Now!)
What if you marry a person on the spectrum? Or give birth to one. All of these relationships shape who we are, who we become, and what we can accomplish in our own world, even though we don’t have autism!
Whatever end of the closeness continuum we are on, almost everyone knows someone with an ASD diagnosis. What they don’t know, or at least don’t often consider, is the long-term impact autism will have on all of us.
Families with a member on the spectrum already struggle to get a diagnosis and find good information, good therapy, and the right guidance to support them in succeeding. The numbers are growing exponentially, but the services needed to support those numbers are already taxed, and unable to meet the demand.
As this burgeoning population of children with ASD matures, and their parents die or become unable to continue to support them, many will flounder. The right supports, interventions and accommodations will be stretched too thin, or will not be in place if we don’t adopt a multi-dimensional view today!
That may result in the individual with autism finding themselves in varying degrees of distress, ranging from the inability to adequately support themselves financially, to managing themselves to successfully live independently, all the way to homelessness.
“It is easy to see the national crisis that could arise if we don’t start addressing autism differently.”
In 20 years, without a change in the dialogue we are having today, we could have a large population of people suffering and depending on federal, state and local governments to support them. It is easy to see the national crisis that could arise if we don’t start addressing autism differently. (Click here to read more about A Burgeoning National Crisis.)
Today, even the way people who are thinking about the struggles of someone on the spectrum miss some of the most important factors. Their thinking simply doesn’t do justice to the entire truth about autism.
Yes, there are the troubles that autistic individuals often face finding their way in the world. But there is so much more. The emotional struggles, the enduring pain, the frustration and the self-doubt that comes with the package is largely overlooked. The emotional struggles of the family, loved ones and mentors of individuals on the spectrum is often ignored, too.
Although not a disease, in so many ways, life with autism resembles life with Alcoholism. Yes, the individual is affected, but so are those around them. This is not the fault of the person on the spectrum, and there is no room for blaming. AND the fallout from the difficulties faced by someone with ASD impacts the lives of everyone they come in contact with regularly.
Changing Our View
If it hasn’t already, at some point that fallout from our one-dimensional view of autism will take on national proportions in the areas of economic well-being, the social/cultural health of the country, and political arenas as well. The presence of autism will influence all of us in our lifetime.
Harboring the limited view that autism is solely the problem of the person on the spectrum to resolve, ignoring the impacts on family, culture, politics and life in North America (and beyond) is becoming commonplace.
Before it’s too late, now is the time for a new dialogue!