Ten Myths about High Functioning Autism and Sensory Integration Disorder

This article (part 1 in a series of three) addresses common myths about Sensory Integration Disorder (SID) or Sensory Dysfunction (SD). The experiences, insights and opinions of over 150 individuals with high functioning autism (HFA) were gathered by the author as the basis for this article.

Of all the characteristics associated with autism, people on the spectrum consistently state that understanding and addressing how their bodies interpret sensations is one of the most beneficial things that neurotypicals (people without autism) can do to be supportive and develop insight into the world of high functioning autism (HFA).

Although people on the autism spectrum have been saying it for several years, treating sensory issues first is a relatively new concept for autism professionals who are typically accustomed to addressing socialization and communication difficulties before and sometimes to the exclusion of sensory problems.

Of particular concern for professionals is the lack of research indicating the effectiveness of sensory integration therapy for ASD's. While there is some emerging evidence that suggests deep tissue massage may be helpful¹, more research is needed to give sensory dysfunction the attention it deserves and provide effective treatment options for individuals experiencing sensory dysfunction.

Proposed changes to the Diagnostic and Statistical Manual's fifth edition (DSM V) by The American Psychiatric Association (APA) would emphasize the degree to which an individual experiences restricted and repetitive behaviors associated with sensory integration (SI) challenges and may provide a framework to help professionals better address sensory issues.

“Sensory dysfunction” is defined for our purposes as the body’s inability to interpret input through the senses (such as taste or smell) to a useful degree; In other words sensory dysfunction occurs any time a person experiences too much or not enough feedback from their world. “External stimuli” simply means anything that can affect any of the senses: a traffic light, an alarm clock, a hug, perfume, squeaky wheel, bright wall hangings or a crowd of people.

Myth #1:

Humans only have five senses: Taste, touch, sight, smell and sound.

Fact #1:

In addition to taste, touch, sight, smell and sound there are two additional senses sometimes called “the hidden senses” or vestibular and proprioceptive senses.

“Vestibular” refers to our sense of balance that is regulated by the inner ear. It creates the awareness of space, gravity and movement as well as our head and body position in relation to the earth.

“Proprioceptive” refers to our awareness of what our body parts are doing and where they are in relation to the world around us. Our muscles, joints and ligaments provide the body with this information.

Myth #2:

People on the spectrum experience sight, sound, touch, taste, smell, balance and body awareness “just like everybody else”. When they complain about specific sensations, they are making them up to avoid something, seek attention or it’s just a psychological problem.

Fact #2:

Sensory dysfunction is real. Individuals on the autism spectrum encounter significantly heightened sensory feedback to their bodies. This can cause confusion, disorientation and even pain in some cases. People on the spectrum may also experience diminished sensations so they are unaffected by events that would cause a person to feel discomfort or pain such as a broken bone or an illness.

People who are oversensitive to specific sounds, touch, taste, sight or smells are referred to as hypersensitive. People who do not feel as much as the typical person are referred to as hyposensitive.

As a matter of fact, people with HFA frequently report that their sensory experiences and perceptions play a significant role in every aspect of their lives including their ability to function in their environment and relate to other people. This is a crucial point for neurotypicals to understand: When a person is hypersensitive and/or hyposensitive, this imbalance can affect every aspect of life including the ability to communicate and socialize effectively! Addressing sensory dysfunction can contribute to improvements in communication and socialization for some people with HFA.

Unfortunately, neurotypicals all too often dismiss sensory dysfunction, having never experienced it. Therefore, although it is one of the most important issues identified by people on the spectrum, it is also one of the least understood aspects of autism. The result is that the individual experiencing its difficulties is offered very little support to cope with their sensory challenges.

On a positive note, many people on the spectrum possess an acute awareness of their bodies and any subtle changes that can be helpful when trying to determine helpful diets, medications or necessary treatments. Some of these individuals utilize their heightened senses to their advantage in their careers and personal lives. Keep in mind that each person is unique and sensory issues may be very overwhelming for some individuals with HFA and affect others only mildly.

Myth #3:

People cannot be both hypersensitive and hyposensitive at the same time.

Fact #3:

It is possible to have both hypersensitivity and hyposensitivity.

For example, it is possible to be hypersensitive to certain sounds such as a DVD rotating in a player, but not be affected by the sound of a firecracker exploding.

Myth #4:

People who “self stim” (for example: rock back and forth, flick their fingers in front of their eyes, twitch their necks to the side, flap their hands) have no control over when and where they exhibit these behaviors and if they demonstrate control over these behaviors then they do not have autism.

Fact #4:

Many high functioning individuals are able to regulate when and where they “self stim”.

They have learned that certain behaviors are not considered socially acceptable and make special efforts to keep these behaviors out of sight in certain environments or around certain people.

Myth #5:

People with HFA “self stim” to annoy or upset other people.

Fact #5:

People with HFA typically “self stim” to relieve anxiety or because it feels good.

Furthermore, it is important to understand that people on the spectrum often do not generalize new information and skills from one setting and situation to another. For example, just because a person with HFA has learned not to rock at school does not mean they will automatically transfer that knowledge to the grocery store or grandma’s house.

Myth #6:

People’s sensory experiences remain constant regardless of time, location and circumstance. If they tolerate something at work or school, they should also be able to tolerate it at home or if they tolerated it last week, they should be able to tolerate it today.

Fact #6:

People’s tolerance of sensory stimuli can vary greatly from one circumstance to another.

For example, many people with HFA report that they are able to withstand certain sounds or lights while in public places such as school or work, but it requires so much energy and effort on their part to “hold it together” during this time that when they return home they must “shut down” as they have used up their ability to cope. During this time they may experience a heightened sense of pain or discomfort to noises, touch, smells and or sights. It is as if they have used up all the hot water in the heater and must wait for the tank to reheat. An increase in rocking, hand flapping and other sensory behaviors may occur during these times as a way to relieve tension that has built up.

Sensory stimulation can be more difficult to tolerate during times of transition or change. For example: when job responsibilities change, a new car or home is purchased, death or birth of a family member, a new supervisor or teacher is introduced.

Furthermore, some individuals report having difficulty experiencing more than one sensation at a time. For example, the feeling of water in the shower may be tolerable in the dark, but overwhelming if the lights are on. Or eye contact may be relatively comfortable to achieve unless there is also background noise from other people talking.

Myth #7:

Inattention and hyperactivity in people with HFA are best treated with Attention Deficit Hyperactivity (ADHD) medication.

Fact #7:

Severe anxiety can often mimic symptoms of ADHD.

Anxiety is defined as excessive worry and distress over regular life events or events that are unlikely to happen. Thoughts of what might happen dominate the person’s day and interfere with their ability to enjoy life and accomplish daily tasks. Furthermore, individuals who have anxiety often report physical sensations such as racing heart, difficulty breathing, sweating, stomachaches, headaches, loss of appetite and trouble sleeping.

Stimulant medications used for ADHD can actually intensify anxiety and cause an increase in sensory seeking behaviors. In order for individuals on the spectrum to live comfortably and reach their potential, it is absolutely crucial that any issues of anxiety be addressed. Unfortunately, anxiety is frequently overlooked or misdiagnosed as ADHD for people with autism and the results can be profoundly debilitating.

Myth #8:

If a person exhibits tendencies such as lining things up, having a specific routine or rituals like turning around before entering a room or washing hands, they must have obsessive-compulsive disorder (OCD).

Fact #8:

Many people who really have HFA are misdiagnosed with OCD, especially when they exhibit milder communication and socialization challenges.

While it is true that HFA and OCD can look very similar on the surface, the defining difference is that in addition to obsessive compulsive tendencies, all individuals with HFA possess difficulty communicating and socializing as well as their obsessive compulsive tendencies. Individuals with OCD do not have remarkable deficits in their ability to socialize or communicate. Unfortunately, people with HFA who receive a diagnosis of OCD often do not get needed help with communication and socialization. Furthermore, even though OCD is an anxiety disorder, these individuals may not get help for their anxiety because the focus of treatment is often to eliminate sensory seeking behaviors rather than addressing the underlying anxiety that causes this behavior in the first place.

Myth #9:

It is not fair to let some students have wiggle seats, squishy balls, hats or other sensory devises because not all students are allowed to have them.

Fact #9:

Sensory devices in the classroom or on the job are not toys.

They are necessary accommodations to help some students be successful in the same way that glasses help improve vision and hearing aids improve listening skills for some individuals. Sensory devices may help relieve anxiety and stress as well as improve focus and decrease the chances of a meltdown or mental overload.

Myth #10:

People on the spectrum should be able to control their urinary urges and their bowels “like everybody else”.

Fact #10:

Gastrointestinal (GI) issues are a major concern for some people with HFA.

As a matter of fact, children with ASD's have a higher rate of GI issues than typical children and children with other developmental disabilities. This can present with extreme discomfort and even pain. Some individuals are unable to sense when they need to void and this can result in loss of both bladder and bowel control. Some individuals on the spectrum also report that for some reason, voiding on themselves feels comforting and they may wet themselves to relieve anxiety. Potty training is a skill that is delayed and difficult to learn for some children on the spectrum.

Part 2 Will explore how SID affects individuals with ASD and common mechanisms that individuals utilize to cope with it. Part 3 will provide readers with useful tips and suggestions to address the most common sensory issues.