People with Autism Don't Like to be Labeled "Autistic People"

People with Autism Don't Like to be Labeled "Autistic People"

Nobody Likes to be Labeled

The country’s fastest growing developmental disorder, autism is now a national epidemic. One in every 91 births results in a diagnosis of autism spectrum disorder. With an annual growth rate of 10 to 17 percent in the U.S.A., a new case of autism is diagnosed every 20 minutes, 24,000 new cases every year. From the best current statistics, a total of 1 to 5 million Americans carry a diagnosis on the autism spectrum.

Autism is a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Children and adults with autism have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. As a “spectrum” disorder, autism affects each individual differently and to varying degrees.

In recent years, since the introduction of Augmentative Communication devices, such as portable laptop computers that provide language for the person with autism, we have now come to understand that many people with autism have a broad range of feelings, interests, opinions, and keen intellectual capacity. Just like everyone else, at the deepest core, people with autism are sweet, loving people who want to have close relationships with others, They just find it extremely difficult and confusing to express the thoughts and feelings that are locked up inside, Thus, developing and maintaining friendships is very, very challenging and just like anyone else, people with autism can often feel lonely and isolated as a result of their disabilities.

People often misunderstand this and believe that individuals with autism want to be alone. That simply is not true.

Some in the public believe or misunderstand the occasional unique talents of people with autism as indicating that they are "autistic savants" with special extra sensory perceptions, photographic memories or idiosyncratic genius. This is not usually the case, even though some persons with autism have surprising gifts—some never forget a name, others who may appear unable to communicate normally may be able to recite accurately the first 200 names in their video collections.

It is all too easy to stereotype people with autism as bizarre and to forget the possible richness of their inner world of the possibility of their living a satisfying life. Still, we should not ignore the real challenges faced by people with autism nor the traits that can interfere with adaptation to life skills and to relationships.

Overview of Autistic Traits*

Inappropriate laughing or giggling
No real fear of dangers
Apparent insensitivity to pain
May not want cuddling or in contrast, may hug too forcefully
Sustained unusual or repetitive play
Uneven physical or verbal skills
May avoid eye contact
May prefer to be alone
Difficulty in expressing needs; may use gestures
Inappropriate attachments to objects

Insistence on sameness
Echoes words or phrases
Inappropriate response or no response to sound
Spins objects or self
Difficulty in interacting with others

Insistence on Sameness

Easily overwhelmed by change, even slight changes.
Highly sensitive to environmental influences, and sometimes engage in rituals.
They are anxious and tend to worry obsessively when they do not know what to expect. Fatigue, and sensory overload easily throw them off balance.
Transitions are difficult.

Impairment of Social interaction

Seems naive, unaware of "the ways of the world", egocentric.
May dislike physical contact
Talks "at" people instead of to them
Does not understand jokes, irony, or metaphors
Monotone or stilted tone of voice
Inappropriate gaze and body language
Insensitive and lacks tact
Misinterpret social cues, doesn't understand facial expression and body language.

Restricted Range of Interests

May have intense fixations (sometimes collecting unusual things).
They tend to relentlessly "lecture" on areas of interest, ask repetitive questions about interests, and have trouble letting go of ideas.
They often follow their own inclinations regardless of external demands, and sometimes refuse to learn about anything outside their limited field of interest.

Sensory Issues and Poor Concentration

May often seem off task and distracted by internal or external stimuli or sensory issues.
Acts disorganized, not knowing where to start or end.
Unusual reactions to different stimulus

Poor Motor Coordination

May be physically clumsy and awkward. May seem accident-prone and have a hard time playing games involving motor skills.
They often have fine motor deficits that can cause penmanship problems that affect their ability to form letters or write clearly.

Language Difficulties

May be nonverbal, minimally verbal, or may seem behind in communication. In contrast, may be very advanced (sound like a walking dictionary or encyclopedia).
Tend to be very literal.
Their images are concrete, and abstraction is poor.
May give the impression that they understand what they are talking about, when in reality they may be merely parroting what they have heard or read.)
Rely on pictures more than understanding of words and may have reading difficulties
Poor auditory processing.

One might say that a person with autism struggles with autistic challenges or has many unusual autistic behavior patterns. That would be correct, because along with communication problems and difficulties in making and maintaining friendships, many people with autism struggle with sensory integrative dysfunctions. This may cause a person with autism to feel a much more exaggerated sensation across some or all of their senses. In some instances, sounds can be heard as very loud; lights can be seen as extremely bright; certain foods and flavors may taste very strong or unpalatable; and physical sensations can be very irritating.

Some people with autism find that it brings them comfort to rock back and forth or spin in circles in a manner that appears odd to others.

Still others find it threatening to be in crowds or groups of people because they may have difficulty reading another person’s facial expressions and as a result, may misinterpret another person’s intentions.

In this field, words and terms can be important. Regardless of how high or low functioning a person with autism may be, he or she is a person in his or her own right, first and foremost. He or she is a person who happens to be struggling with and trying to deal with the difficult challenges and symptoms of an autism spectrum disorder to a greater or lesser degree.

We believe it is more inclusive, sensitive and respectful to refer to a person who is diagnosed with autism as a “person with autism,” not as an “autistic person.” The same idea applies when you speak to a parent who has a child or an adult with autism. It shows more respect to refer to them as a parent of a child with autism, not the parent of an autistic child. Just like all parents, we love our children, whether they have a diagnosis on the autism spectrum or if we are parents of “typical” children. A parent is a parent, regardless of the challenges our children struggle with. If we refer to a person on the autism spectrum as a person with autism, not an autistic person, we better allow that person their dignity as an equal member of society.

If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to undertake lifespan planning and planning for housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4