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The Humanity of Autism

January 25, 2014

Autism is often misunderstood by the public. Because it takes many forms and has a wide range of characteristics, its effects can be subtle or startling. When it’s diagnosed, entire families are changed forever. Communication and social interaction can be affected in varying degrees. It is rapidly on the rise, and there is still much about it that remains unresolved. However, one thing about autism is absolutely certain; the people who live with it are completely equal members of the human family.

There is a staggering amount of material written about the possible causes and treatments. Countless articles and papers focus on the behaviors and other issues that are sometimes present. Much of this information is useful, some of it less so. But as we navigate the massive volumes of research about such a diverse topic we must always remain aware of the fact that we are talking about flesh and blood human beings with the same needs as anyone else. Individuals living with autism are not just statistics. They are not just a diagnosis. They are loved ones, friends and co-workers.

You only have to spend a short amount of time on social media to realize that this subject elicits strong opinions regarding treatment choices and possible causes. There is sometimes great division among individuals who have autism, their families and those who work in this field. These conflicts often result from the fact that everyone has their own individual experiences which makes each person’s point of view valid for them. Since autism is not the same for everyone, it is critical that we treat each person as a completely unique human being with their own personality, likes, dislikes, challenges and abilities. To compare one person against another is unfair to both.

But there are still those who are quick to make broad generalizations. When they hear the word autism they jump to conclusions and make unfounded assumptions about a person.

Too often the ones we care about are described as “different”. In many cases it is used in a negative context. For some people it is code for “not normal” or “less than”. They witness a child engaged in repetitive body movements or they encounter a person who is nonverbal, and they immediately pass judgment without knowing a thing about them. Many mothers and fathers have had a child with autism display a particular behavior in public only to be condemned for their parenting by observers who had no frame of reference for what was causing the child to act that way.

Because it can be an invisible disability, autism is often met with such intolerance. Behaviors that can be associated with it are frequently not understood and at first glance are presumed to be bad or dangerous. When a person with autism becomes upset or frustrated in public there is little thought or consideration given to what could actually be causing their discomfort. People rush to judgment without attempting to understand the situation. This kind of reaction only adds stress to someone who is already coping with issues that others are not aware of.

While autism is a fact of life, it is how we respond to those who live with it that determines, to at least some degree, whether their experiences will be positive or negative. It is crucial that we are supportive and accepting. We must be interactive, but we must also give them space to process the world in a way that is logical to them. We must avoid the tendency to try and convince people with autism that they should meet our expectations. It is incorrect to assume that we have all the answers. Too often we mistakenly believe that they will somehow be improved if they will only follow our instructions.

Although it is necessary to assist individuals so that they can function within society in a way that works for them, we must take great care not to fall into the trap of pushing them to fit in. After all, each of us wants to be accepted exactly as we are. We don’t want to be considered broken or in need of some kind of repair. Our task is to provide programs and supports that allow each person with autism to develop the talents, skills and abilities that they already possess and to provide them with the opportunity to learn new ones. In this way we practice acceptance today while offering hope for tomorrow. If we will only stop and take a moment to appreciate the person behind the diagnosis we will realize that within the complicated world of autism resides the quiet beauty of the human spirit.

That is why we must not allow autism to be used as an excuse to ignore, disrespect or neglect someone. People on the spectrum have the same rights and freedoms as any other member of society. And if for some reason individuals with autism have difficulty understanding their rights than we must speak up on their behalf. We must be willing to advocate so that their voice is heard, no matter what their circumstances might be. For those who are nonverbal or have challenges with their speech we must reach out and find ways to communicate that allows them to make a connection with the world on their terms. A person’s lack of social interaction should never create the automatic assumption that they cannot learn. It is wrong to make snap judgments based on opinions and not facts. Just because someone cannot currently perform a task does not mean they can’t learn to do it in the future. Accepting the diversity that autism represents allows us to embrace inclusion for everyone no matter what their current abilities might be.

Because people with ASD can experience sensory sensitivity to sights, sounds and touch, it requires great courage on their part to try and connect with a world that overstimulates their senses and at times seems irrational to them. How would we react if we were constantly being pushed to behave in a way that did not seem natural to us? How would we respond if we found ourselves in a society that we did not understand? How isolated would we feel if we could not find a way that was comfortable for us to interact with others? People with autism courageously attempt to live so that their reality makes sense to them. Therefore we have a responsibility to try and understand their world and to respond in positive ways. That includes accurate diagnosis, early treatment and providing the resources necessary for families to adjust to their situation and move forward with their lives. It means practicing inclusion in all areas of society and making sure that people are treated as equals at all times. We must remember that autism affects the human brain, but it has no effect on a person’s humanity. Neurological function plays no part in determining the worth of an individual or the value of a life.

In other words, how someone perceives the world should not affect how the world perceives them.

Certainly there are situations where people with autism are vulnerable and dependent on others for their care and welfare. In such cases our compassion must be proactive. Every effort must be made to allow them to have a life that provides stimulation and activity. We must help them remain engaged in every way that is safe for them. They cannot be pushed aside and forgotten because they do not wish to have contact with those around them. We cannot neglect them just because they are reluctant to verbally interact with others. They cannot be marginalized because they are uncomfortable in social settings. It is important for us and them that we embrace their humanity because although a person with autism may wish to avoid physical touch they can still touch your heart.

Unfortunately, there is an alarming increase in the rate of ASD that clearly demonstrates the need for a corresponding increase in funding for research on treatments. It also means we must increase the programs and supports that we offer to individuals and their families. It means we must increase educational awareness so that all citizens understand the dynamics and effects of neurological conditions. But most importantly it means that, as a society, we must increase inclusion and acceptance while avoiding judgment and intolerance. We cannot ignore another person just because it requires extra effort on our part to interact with them.

But for all the facts, figures, statistics and research regarding autism it ultimately comes down to how we treat each other. It is the very human story of the people who live with it and those who love and support them.

A diagnosis of autism affects every member of a family as they make sacrifices and adjust their own personal needs to ensure that their loved one has the opportunity to live their life to the fullest. The parent of a child with autism learns to take life one day at a time while treasuring the small quiet moments that others take for granted. They realize the importance of every victory, and they rejoice at each milestone no matter how delayed. They willingly assume responsibilities that others will never be aware of, and they face a lifetime of challenges with courage. They are a doctor, psychologist, advocate, playmate, friend and the person their child loves most.

When a mother holds her son or daughter with autism, the future can seem frightening. The pressures she faces can include everything from financial stress to lack of educational choices to a shortage of employment options when her child reaches adulthood. She can be overwhelmed. The lack of understanding she experiences from others can be infuriating. She can feel alone and isolated from other parents whose children are progressing while her child struggles. She gets conflicting advice about treatments, supports and programs or perhaps no help is offered at all. Almost every aspect of her life revolves around the needs of her child. Her every waking moment is touched in some small way by the fact that she is the mother of a child with autism.

However, all the problems, frustrations and setbacks are made bearable because of the complete and total unconditional love she has for her child. It is a love that will sustain them in their darkest hours and that will allow her to face every difficulty with wisdom and resolve. It is a love that will burst with joy over her child’s accomplishments in the face of challenges and obstacles. It is a love so profound that it will triumph over the ignorance, intolerance and cruelty of others. It is a love that will act as a bridge from the past to the present and into the future. It is a love that will bring peace when there is chaos and comfort when there is despair. It is a love that will define giving and selflessness, and it will express the deepest compassion possible for another human being. It is a love that will allow her to commit her entire being to the good of her child. It is a love that will grow ever stronger with time and will never weaken no matter what life may bring. It is a love that will bind their lives together forever. It is a love that will be eternal.

We owe that mother and her child nothing less than our best efforts to ensure that their lives are filled with hope, opportunity and equality.

At this time we cannot control the incidence of autism, but we have complete control over whether those with autism are treated with the dignity and respect they deserve.