April is National Autism Awareness Month. People diagnosed with autism often face challenges that go beyond their diagnosis. Each year during this month, the Autism Society works hard to focus on the following three key points.
Autism spectrum disorder (ASD) is a developmental disorder that generally encompasses behaviors that can vary on a spectrum of severity. These behaviors affect a person’s ability to communicate with others, and most people with autism are diagnosed around age three. The cause of autism is unknown. There has been a debate surrounding autism and vaccinations, but the idea that autism is caused by vaccination has been thoroughly discredited, with the original study author retracting his original conclusions.
Approximately one in 68 people in the U.S. are diagnosed with ASD annually, and researchers believe that there may be a genetic cause of autism. Whatever the cause, the brains of autistic children vary in structure and function from those of neurotypical children.
These differences can cause:
- Delayed language learning
- Difficulty maintaining eye contact
- Self-stimulating (stimming) such as rocking, chewing, or gestures
- Poor executive function (which governs planning and organization)
- Intense focus on an interest, object, or activity
- Poor motor skills
- Extreme sensory sensitivity, particularly to touch or noise
These behaviors can be found on a spectrum from mild to quite severe. In some severe cases, people with autism are seen as “living in their own world” and do not communicate at all with those around them. On the other end of the spectrum are people with Asperger’s syndrome, a condition that can be accompanied by traits of exceptional giftedness. Awareness begins with acknowledging the complexity and variation of ASD and building from there.
Because people with autism often have difficulty with communication skills, in the past they have been relegated to the sidelines or the back of the classroom (if in the class at all). New federal education guidelines such as No Child Left Behind (2001) and Race to the Top (2010) have changed that as federal rules require students to be educated in the least restrictive environment (LRE). This may mean that an autistic student will be joining a general education class with the support of a paraprofessional, or it may mean changes in the educational path itself. Regardless, the Autism Society focuses on including persons with autism in daily life, making a more diverse society.
Because communication can be challenging, autistic people may find themselves spectators in their own lives. The focus of National Autism Awareness Month is to empower those with ASD to make choices in their lives and have a sense of self-determination. Early intervention with an autism diagnosis is the key to developing the communication skills needed for autistic people to live full and independent lives. While it is true that some on the severe end of the spectrum may not be able to make choices on their own, at all times the effort should be made for autonomy as much as possible.
Of these three basic issues, awareness is the first place to begin. Because communication is developmentally delayed, this is often the first area that breaks down when developing a better understanding of the challenges that autistic people (and their caregivers) face.
When dealing with chronic pain, for example, some behaviors that may be classified as “autistic” are, in fact, an expression of pain. As a neurotypical person, imagine if you were experiencing pain but lost the ability to explain it or indicate where you were hurting. You might withdraw and become silent, trying to cope with the pain, or you might squeeze or scratch the area of your body that was hurting. For people with autism, these behaviors can be written off as stimming, with the pain going untreated.
Indeed, some have reported anecdotally that people with autism are not as sensitive to pain, but that conclusion is false. The key lies in understanding the signs and signals of pain in people with ASD and then treating those symptoms properly.
Non-verbal and partially verbal children with ASD may express pain in one of the following ways:
- Withdrawal from normal daily activities
- Stimming that is new such as thumping on the body or touching the area that is painful
- Behavioral changes like increased aggression
One important study out of Stony Brook University in New York indicated that sleep disturbances may be an important indicator of pain in people with autism. Developmental pediatrician Paul Wang, Autism Speaks senior vice president for medical research, believes that “Families and physicians who encounter these situations should look for ear infections, dental problems, GI conditions, skin conditions and other possible causes of pain or discomfort.” Looking at how often these sleep disturbances occur can also provide important information for proper diagnosis and treatment.
As with all people, it is important to carefully evaluate each situation when assessing levels of pain. It is dangerous to assume that atypical communication means pain is less severe. Chronic pain in people with autism can lead to similar types of issues that neurotypical people have with chronic pain (e.g. depression and anxiety). These comorbidities can further complicate an already complicated situation, so it’s best to learn to recognize pain and treat it when it occurs.
Image by mimitalks, married, under grace via Flickr