- Assessment Processes for Autism Spectrum Disorders: Purpose and Procedures
- Autism Awareness Month: Facts and Tips for Working with Individuals on the Autism Spectrum
- Diagnostic Criteria for Autism Spectrum Disorder
- Diagnostic Criteria for Social (Pragmatic) Communication Disorder
- Disability Information for Someone who has an Autism Spectrum Disorder: A Customized Example
- Getting Started: Introducing Your Child to His or Her Diagnosis of Autism or Asperger Syndrome
- Increasing Incidence of Autism Spectrum Disorders Continues in Indiana
- Standardized Tests and Students with an Autism Spectrum Disorder
- Article 7, Title 511
- What’s in a Name: Our Only Label Should Be Our Name: Avoiding the Stereotypes
- For Physicians: Diagnosing Autism Spectrum Disorders and Working with Schools
What’s in a Name: Our Only Label Should Be Our Name: Avoiding the Stereotypes
Contributed By: Kim Davis, Educational Consultant
“Labeling is a process of creating descriptors to identify persons who differ from the norm. Normal is a broad relative term. Everyone is different in some way from someone else” (Darrow and White).
“Labeling is definitive; once we say it then it holds meaning” (Namka).
How many labels do we use in a day without conscious thought? The student, the teacher, the therapist, or the principal are labels that conjure up images of who those people may be, what they look like and how they might act. What are the labels that might be applied to us? Would we like them? Do the labels describe every aspect of who we are? Are we more reluctant to claim some labels and not others? How do we feel when we are labeled and categorized?
Now, think about the students in special education and their labels; the identified students, the severes, the BDs and, of course, the autistics!! What images or feelings do those labels create? What do labels do? How are they used? Are they helpful? Labels can be helpful, but can also become dangerous. They can create stereotyped images based on collective thinking, hearsay, bias, fears, and the inability to separate the person from the disability or behaviors that may occur. As Mike Squires stated in his article, “Labels: A Liability of Disability”, “lumping a diverse group of people together… discards all sense of identity.”
Why Do We Use Labels?
So, why do we use labels? Perhaps “there are some positive aspects to labeling a person’s disability. Labels are sometimes used as a prerequisite to receiving federal funding or to acknowledging accommodations that must be made for a person with a disability” (Cassidy & Sims, 1990 in Darrow and White). Yet, a disability label is simply a medical and educational diagnosis. When people with disabilities are referred to by their medical or educational diagnosis, we have devalued them as human beings. For many people with disabilities, their medical diagnoses define who they are (Snow, 2003). While labels are often useful in communication with other professionals and in determining services for persons with a disability, they rarely tell us much about the person (Darrow & Hurt, 1998).
In his book, Learning to Listen, Herb Lovett (1996) illustrates how labels are often used. When Herb asked the staff at an institution about a specific woman, the response was:
This client is a left handed 32 year old Caucasian female, tending to obesity with a history of grand mal seizures, borderline personality disorder, depression and impaired intellectual functioning. She is currently a resident at the Dixon county developmental center where she is being treated with Haldol and Dilantin. Her day is spent at a community vocational training program when she is delusional, withdrawn, and both verbally and physically aggressive.
In order for the professionals to ‘understand’ her, she was described only in medical terms, instead of looking at her life and relationships that impact her. Professionals often use labels in an attempt to understand a person but rarely do those descriptions help anyone to get to know the individual as a person. Instead those types of descriptions can create stigma and stereotypes that cause isolation.
Stigma and the Student in the Classroom
At a recent conference, Anne Donnellan shared a story about a totally black cat that, unfortunately, gets a stripe painted down its back. It now looks like a skunk, but is still a perfectly harmless pet cat. However, the cat now has a stigma or stereotype attached to it, and is named for that stigma which creates a bias. That bias will change ones expectations and reactions. It is important to remember that context is crucial to individual needs. We need to look at the whole picture within each context and our history in that context before making judgment (Donnellan, 1999).
What bias is created when a teacher is told an “autistic student” will be in his or her class? Perhaps immediate thoughts of the stereotypes about students with an autism spectrum disorder may emerge. That student can become categorized with all the other students with autism according to the stereotypes that have come to be associated with the label. Just as other groups of people are categorized based on stereotypes and labels, (e.g., unwed mothers, manic/depressives, workaholics) “autistic” is a label that may cause harm to the individuals attached to that label. There are many stereotypes that follow individuals with autism spectrum disorders and even more when ‘high functioning’ or ‘low functioning’ is attached to the label. Hearing that a student is ‘high-functioning’ or ‘low functioning autistic” creates preconceived responsibilities, roles, and obligations for teachers and for the student. In that respect, the label negates the person. Labels, especially ‘low functioning autism’ can mask competence, abilities, gifts, and strengths. Quite often instead of seeing Johnny or Susie, one sees autism, behaviors or simply the disability! “Labeling has always created negative images when applied to people with disabilities, as it always projects the disability rather than the person’s gifts and talents” (Forts, 1998). These labels fill us with feelings and expectations that may have nothing to do with the specific person’s abilities, needs, interests or preferences.
Labels can create expectations that are based on previous experiences, hearsay, or what was taught in teacher training. When a new person enters into any human service profession, (e.g., teaching, job coaching, paraeducators, therapists etc.), those who have been providing services are eager to offer his or her opinions about every individual with autism or other disability. Often those opinions may be mistaken for the truth about that individual. In fact, those opinions often color how others may see that individual with autism and create unfortunate situations. Because people with the label of autism and their support staff may have had challenges in the past, it can become the expectation or opinion that it will happen again. Therefore, those who support the person with autism take an attitude of power and control instead of compassion and understanding. There is an effort to make things happen the way they are ‘supposed’ to happen instead of looking at possible reasons for the challenges. We may overlook the human being and see only a label and a situation that needs to be managed or controlled. It is important to discard opinions and get to know each person with autism based on personal interactions and not on the experiences of others.
The Language We Use
The language we use sets a tone and also reflects on us. It is an indication of how we perceive others and their worth in the world. Our words can often reflect our practice. We know that a person’s self image is strongly tied to the words or labels used to describe that person. If a child is told she is lazy or slow, she may begin to believe that and “live up to” that label. On the other hand, if she is told she is brilliant, she may begin to work to become brilliant! Words hold power.
What words would you used to describe individuals with autism spectrum disorder if they did not have a disability? Interesting? Boring? Funny? Dull? The similarities between individuals with and without a disability far exceed their differences” (Darrow & White, 1998).
It is said that individuals with autism have challenges with generalization. Perhaps those of us who do not have autism have challenges with generalization as well. We may over generalize our knowledge and experience about the label of autism to make it fit each individual we support. This may be more ‘handicapping’ that the ‘true diagnosis’.
Too often, however, disability-related labels are used unnecessarily to describe a person. A disability should not be used as the primary adjective used to identify an individual, such as ‘the autistic student in my class.’ A disability is not the most important descriptor of any individual. It is best to focus on the person first and not the disability. Defining persons by their disability, as if the disability comprises the entirety of the person, often isolates or segregates people and more importantly, fails to recognize their humanness that goes well beyond the disability “The nature of descriptors and how they are used often infer negative implications about persons with disabilities” (Kailes, 1986).
Using People First Language!!
People who support individuals with autism spectrum disorder (and other disabilities) should begin to incorporate people first language into their everyday dialogues. This means that in choosing words to describe a person with a disability, the guiding principle is to put the person first not the disability such as the person with autism or the student with an autism spectrum disorder. People first language describes what a person HAS not what a person IS. It puts the person before the disability. When we start calling things by their right names, and when we recognize that people with disabilities are people first, then we can begin to see how people with disabilities are more like people without disabilities than they are different.
In a 1998 internet conversation about labels as metaphors, Scott Danforth stated:
"In my experience, the scariest thing about these labels is the way we create them and then run around pretending they are not humanly created/perpetuated. We treat them as if they are solid as a rock, unchanging, unquestionable. We also pretend that everyone using a given label or term means the same thing, an inevitability in language use."
It is important to remember that any label is a tool and must lead to something if it is helpful. Using a label tells us very little about an individual except the fact that there is a disability. It is often wiser to get to know each person as an individual with strengths, interests, preferences, fears, and frustrations and realize that “autism” is only one aspect of each individual. If we can get away from the stigma of labels, perhaps we can begin to see a way to assume ability and competence and allow each individual to live up to expectations rather than allowing the label of autism to dictate potentially lower expectations.
Danforth, Scott (1998). Internet listserv conversations on COMMINC @listserv.syr.edu.
Darrow, A. & White, G.W. (1998). “Sticks and Stones… and Words CAN Hurt: Eliminating Handicapping Language” in Music Therapy Perspectives, Vol. 16 #2.
Forts, A. (1998). Status and Effects of Labeling. TASH Newsletter, page 13.
Lovett, Herb. (1996). Learning to Listen: Positive Approaches and People with Difficult Behavior. Baltimore: Brookes Publishing.
Namka, Lynn Ed. D. (1997). “Labels are for Jelly Jars: Teach Children—Don’t Label Them!” members.aol.com/angriesOut/teach3htm.
Snow, K. (2003). People First Language document. Self published at 250 Sunnywood Lane, Woodland Park, CO. 80863.
Squire, Mike (1994). “Labels: A Liability of Disability.” www.jtsma.org.uk/tributemikesquirelbls.html
TASH Newsletter October 1998 Vol. 24 #10: Effects of Labeling.