In case you haven’t heard, the number of Autism cases is on the rise. Over the past two decades, there has been an enormous amount of research, social studies, diagnostic tool improvements and an increase in organizations willing to get into the game and help the children and families who struggle with this disorder. So what has been the impact and where are we going? Let’s take a look…
Autism is defined as a disturbance in psychological development in which use of language, reaction to stimuli, interpretation of the world and the formation of relationships are not fully established and therefore follow unusual patterns. What this means is that Autism is a disorder that affects the brain. You will see the effects of Autism in three main areas: behavior, socialization and communication. What this looks like in the real world can be different, depending on the individual person. Let’s look at some examples for each of these areas.
- Socialization:I once worked with a family whose son was obsessed with airplanes. When I say obsessed, I mean that he didn’t just like airplanes and have a few models. He knew how they were made, the different types of engines each had and every route used by airplanes across the entire United States. At any given time, he could tell you how to get from Boston to Houston with ease.His intense interest alone would raise some red flags, but he also could not have a conversation about anything outside of the world of airplanes. When we first began to work with him, he would have a full blown tantrum that would last for hours if the conversation did not include what he was focused on. He could not hold a two-way conversation.He was 5 years old. Do you see the difference?
- Behavior: Behavior, like many of the main aspects of Autism, will vary from one child to another. Like our first example, they can be obsessive compulsive around a certain topic, routine, etc. A child can also show behaviors because of communication difficulties. For example, I worked with a teenager who did not speak and had no means to communicate with anyone. What he did do was tantrum all day, every day. When I began to work with him using a picture program known as PECS, he began to show us he wanted to go for a walk. Within a few weeks, he was no longer tantrumming, because he could finally communicate.
Behaviors can also take many other forms, but they almost always have some intrinsic purpose to the person. This is different than the terrible twos.
- Communication: Like in the example above, many people with Autism have difficulty communicating. Think of it this way: Socialization is how we speak and relate to one another. Communication is the actual words we use. Some people with Autism do not have any speech abilities, like Carly Fleishman, the author of Carly’s Voice. However, when a person with Autism is given a method that fits their ability and interest, they can communicate in ways in which many thought were not possible.
Since Autism was first recognized as a disorder in the 1950’s, there have been many advances in how Autism is structured in the psychiatry field. Early on, Autism was just Autism. Dr. B called it the Refrigerator Mom Syndrome, because he felt people with Autism were not held enough by their mothers when they were children. Of course, this initial theory has since been debunked, and we have come a long way since then.
Now it is seen as an umbrella in which many other disorders fit under it. Simply put, the other disorders that fit under the umbrella of Autism have pieces of the diagnosis requirement, but to different degrees. The three main diagnoses under the Autism umbrella are: Asperger’s, PDD-NOS (Pervasive Development Disorder- Not Otherwise Specified) and Autism.
- Asperger’s, otherwise known as high-functioning Autism, is often hard to diagnose. To the untrained eye, someone might describe a person with Asperger’s as “quirky”. But to the trained therapist, a person with Asperger’s struggles most in the area of socialization. They will often have difficulties participating in a two-way conversation that isn’t solely focused around their interests, like our example above. They will also have behavioral difficulties, but these will be to a lesser degree.
- PDD-NOS is often considered the middle-of-the-road diagnosis. People with PDD-NOS can be very smart, but they have difficulty socializing. They may also have communication issues, and they could also have behavior issues to a heightened degree.
- Autism in its truest form will include all three areas to a significant level. These are the people whom you may see more of in the public service announcements for Autism. They may also be easier to see in the community because their needs may be significant.
Autism continues to be more prevalent in boys than in girls. This fact has been pretty consistent over the years, and this has lead much of the current research to find a cause for Autism. In the Autism community, there are usually two fields of thought on a cause for why there has been such an increase.
- One idea is that it is genetic. There have been a fair number of studies talking about how it can be traced within families. There are many families with more than one child with Autism. In addition, there are many neurological studies that are looking at the role the brain is playing.
- The other idea is that it is environmental. You may have heard of the study done by Dr. Wakefield who took a look at the effect of combined vaccinations on children. This study has since been discredited, however, with all of the preservatives we put in our food, chemicals in the ground, etc, there could be something to support the role that the environment plays on the development of the people who live within it.
I think there is a pretty good argument that it might be a little of both. Maybe people are predisposed through genetics, so if they come into contact with certain environmental factors at just the right time in their development, they could be adversely affected. No research studies have led to this distinction, just a hunch from working in the field and hearing the stories from real families struggling to find answers.
Loving someone with Autism can be a roller coaster. At the beginning, you are just trying to get on the track and get as many services as you can, because early intervention is the key to long term growth. Parents have to be vigilant with advocating for evaluations if they see signs that their child is not developing like they should. The key is to not be in denial… get help!
As the children continue to grow and enroll in school, parents become focused on the aspects of bullying and integration. Current studies show that 40% of children with Autism are bullied in some way in school. Many children with Autism have IEPs, and often children who have an IEP are receiving their schooling outside of their own school district. This is an interesting finding in light of the budget issues school districts face on a yearly basis. There has to be a better way to support children in the way that they need it and still keep them connected with their community and friends, because socialization is the hardest area for a person with Autism to overcome.
The needs of people with Autism is mind-boggling. The cost of supporting a person with Autism over their lifetime has been established at $3.2 million dollars! Yes, that is MILLION! It really speaks to the depth of need that a person with Autism has. This is not to say that a person with Autism needs a high level of services their entire life, but rather that a person with Autism needs a certain level of support throughout their lives and people are living longer than ever before.
In the beginning, a child will receive many types of therapies such as physical therapy, occupational therapy, speech and language therapy and applied behavioral analysis. This is just to name a few of the most popular. As a child gets into school, they may carry a different level of support, depending on their focus, but they will continue to need support to work out the issues around hormones and more social skills. Remember your teens? Not easy to manage for anyone. As an adult, you are focused on independence. Things like supported living and getting a job are often addressed. A person with Autism may never be able to live solely on their own, so someone will always need to be there to support them and help them realize their dreams.
Autism has changed over the past 50 years. There are more people diagnosed, which has led to more attention to the needs of this community. More research is being conducted to find a cause for why it is happening in the first place, and therapies are continuing to develop better methods to treat the people they support. But the work cannot end there.
Because of local and national advocacy, the issue of rise of Autism in our society will continue to be a topic of discussion. Raising awareness both locally and nationally will be the key that will lead to social acceptance, increase in services, and hopefully a decrease in the number of children and adults diagnosed. It will be amazing to see what the studies and research will uncover over the next 50 years!