8 Aphasia Misconceptions: Debunking the Myths
Check out this blog post that I wrote, which originally appeared on the Constant Therapy blog, BrainWire.
As humans, we often tend to make generalizations and assumptions. These can result in some major misconceptions, particularly about disorders and diseases. Here, we’ve debunked several of the big assumptions about aphasia tied to incidence, intelligence, presentation, therapy timelines, and more. The following assumptions are not true.
Aphasia affects intelligence. Aphasia actually has nothing to do with intelligence. It has to do with language. Just because someone cannot understand you, or find the words to express themselves, does not mean that they are any less brilliant. Intelligence and language are entirely separate!
Aphasia is rare. Aphasia actually affects millions of people around the world! You are NOT alone. Based on data presented by the American Speech-Language and Hearing Association, about 80,000 people get Aphasia each year in the United States. At a given point in time, it is estimated that about 1 million people in the United States alone have Aphasia – and that’s just in the US! It can happen to anyone, regardless of race, nationality, gender, and even age.
Aphasia presents the same way across persons with Aphasia. Some persons with Aphasia may have trouble understanding, but don’t have as much trouble with speaking. Others with Aphasia may have a very tough time expressing themselves, but understand language perfectly well. Some may be able to read, others may not. There are actually some persons with Aphasia who can write, but cannot read (even things they write themselves!). There is no one presentation of Aphasia. Everyone has individual strengths and weaknesses. Also, some Aphasia may be so severe that persons cannot speak and require an augmentative communication system (this may be high-tech like an iPad or Dinovox, or low-tech, like a communication board or book with picture symbols) to communicate. Yet for others, their Aphasia may be very mild, and barely noticeable to a communication partner. All types of Aphasia are frustrating in their own right.
Aphasia affects hearing. Often conversation partners (almost always in a well-meaning attempt to help), will speak more loudly to someone with Aphasia. However this does not help! Speak more slowly – this gives the person with Aphasia time to process and formulate a response. Someone with Aphasia might have separate hearing difficulties, but Aphasia itself does not affect how well you can hear sound! It may, however, be helpful to communicate with someone with Aphasia in a quiet environment – loud environments like restaurants can be very difficult for someone with Aphasia because there is so much competing sound. Extra sound can be very distracting when you already have to focus exceptionally hard to understand language.
Aphasia always goes along with physical disabilities. Persons with Aphasia secondary to stroke often have right-sided weakness (the left side of the brain is responsible for movement in the right side of the body AND for language!) that might affect their right arm, hand, or leg. Depending on the nature and location of neurologic damage, some persons with aphasia may have additional, more significant physical difficulties as well. However persons with Aphasia do not always have paralysis or paresis.
Aphasia always results from stroke. Everyone who has a stroke should be evaluated for language difficulties. But not everyone who has a stroke will have Aphasia. Also, while stroke is the most common cause of Aphasia, it is not the only cause. Traumatic Brain Injury (TBI) and many progressive neurological diseases can cause Aphasia, and it may even occur spontaneously (such as in the case of Primary Progressive Aphasia, which we will discuss in more depth in a later blog post).
Persons with Aphasia all feel one way about their Aphasia and all want the same assistance from you as a communication partner. Acquiring Aphasia is a life-altering event, and just with other life-altering events, everyone deals with it differently. Some may be angry. Some may be depressed. Others may have found a perseverance and fighter mentality they never had before. Regardless, you should never assume what a person feels about their Aphasia. Similarly, you shouldn’t assume that everyone with Aphasia wants the same accommodations from you as their communication partner. Some people with Aphasia may appreciate it when you help them find a word; others may find it infuriating. Some may find it helpful for you to slow down; others may not need that accommodation. When in doubt, remember that you can ask for their input! A person with Aphasia often knows exactly what they need from you as their communication partner to help them to better communicate, and often will appreciate you taking the time to respect them by asking if and how you can help.
Aphasia can only improve for one year following the event causing it. This has been debunked by research study after research study, and persons with Aphasia will tell you that with the right therapy, your recovery is NOT limited by the one year-marker of your diagnosis. You can continue to improve your language skills for the rest of your life!