zondag 15 augustus 2010

Stigma and Mental Illness

The "Journal of Mental Health" issue of August 2010, published an article about
"Stigma and Mental Illness"

(note: Mental Illness also includes Autism!!!)

It says:
When applied to individuals with mental illness, this kind of moral imputation has egregious effects on a number of levels, what we have called public stigma, self-stigma, and label avoidance.

- Public stigma is the phenomenon of large social groups endorsing stereotypes about, and
subsequently acting against, a stigmatized group: in this case, people with mental illness.
- Self-stigma is the loss of self-esteem and self-efficacy that occurs when people internalize
public stigma.

- Label avoidance is a third example of stigma: people do not seek out or participate in mental health services in order to avoid the egregious impact of a stigmatizing label.

Public stigma is conceptualized as a staged process. In the first stage, the general public
infers mental illness from explicit cues: psychiatric symptoms, social-skills deficits, physical appearance, and common diagnostic labels. These stigmatizing cues often elicit stereotypes, knowledge structures that the general public or individual with mental illness learn about a marked social group.

Commonly held stereotypes about people with mental illness include violence (people with mental illness are dangerous), incompetence (they are incapable of independent living or real work), and blame (because of weak character, they are responsible for the onset and continuation of their disorders) . Knowledge of a set of stereotypes however, does not necessarily
constitute agreement with them.

Therefore, the outcomes of public stigma are most damaging only when people who are prejudiced endorse negative stereotypes (‘‘People with mental illness are violent and incompetent’’) and generate negative emotional reactions as a result (‘‘I am afraid of them’’) . In contrast to stereotypes, which are beliefs, prejudicial attitudes
involve an evaluative (generally negative) component.

Prejudice is a cognitive and affective response that leads to discrimination, a behavioral reaction. Discriminatory behavior constitutes a negative action against the out-group, which may manifest as avoidance, not associating with people from the out-group, or loss of opportunities or treatments that would promote a person’s

Public stigma harms people who are mentally ill in several ways.
Stereotype, prejudice,
and discrimination can rob people labeled mentally ill
of important life opportunities that

are essential for achieving their life goals

Studies have shown that public stereotypes and prejudice about mental illness have a deleterious impact on obtaining and keeping good jobs and leasing safe housing. It appears employers avoid workers with mental illness by not hiring them. Landlords ‘‘protect’’ tenants from people with mental illness by not renting to them. The negative impact of self-stigma can be just as great. Prior to the onset of mental illness most people are aware of the culturally endorsed stigma associated with mental illness. Upon receiving a diagnosis, the beliefs associated with stigma are activated, affecting one’s sense of self.

Living in a culture steeped in stigmatizing images, persons with mental illness
may accept these notions and suffer diminished self-esteem, and confidence in their future. Research shows that people with mental illness often internalize stigmatizing ideas that are widely endorsed within society and believe that they are less valued because of their psychiatric disorder. Persons who agree with prejudice concur with the stereotype; ‘‘That’s right; I am weak and unable to care for myself!’’ Self-prejudice leads to negative emotional reactions; prominent among these is low self-esteem and low self-efficacy.

Low self-efficacy and poor self-esteem have been shown to be associated with failing to pursue work or independent living opportunities at which people with mental illness might otherwise succeed.
The negative impact of self-stigma on self-esteem and self-efficacy may result in a ‘‘why try’’ effect in individuals with mental illness. The person may avoid situations where he/she expects to feel publicly disrespected. Behavioral consequences in the ‘‘why try’’ model exceed notions such as social avoidance. People who apply stigma to themselves may feel unworthy or unable to tackle the exigencies of specific life goals.

One might think that beliefs like these arise because the person indeed lacks basic social and instrumental skills to accomplish a specific aspiration. However, lack of confidence may reflect doubts raised by defining one’s self in terms of specific stereotypes. A person who has internalized stereotypes such as ‘‘the mentally ill have no worth because they have nothing to offer and are only drains on society’’ will struggle to maintain a positive self-concept.
Research has suggested that many people engage in label avoidance, that is, they choose not to pursue mental health services because they do not want to be deemed a ‘‘mental patient’’ or suffer the prejudice and discrimination that the label entails.

For example, negative attitudes about mental health inhibit service use in those at risk of a psychiatric disorder. Findings identified stigmatizing beliefs that might sway people from treatment. These included concerns about what others might think and the desire to solve one’s own problems.
Endorsing stigma predicted in research, whether adults were compliant with their antidepressant medication regimen 3 months later.

Furthermore, research has suggested that people with concealable stigmas (people who are gay, of minority faith-based communities, or with mental illness) may decide to avoid harm by hiding their stigma and staying in the closet. These individuals may opt to avoid the stigma all together by denying their group status and by not seeking the institutions that mark them (i.e. mental health care). This kind of label avoidance is perhaps the most significant way in which stigma impedes care seeking.

DSM-V and stigma

The American Psychiatric Association recently made public initial draft revisions proposed by the DSM-V work groups. The draft was presented on the APA website with a message from the DSM-V task force leadership asking for the public’s input and feedback about the suggested modifications. This is the first time that APA opens its doors to broad public review of the process and considerations that go into revisions of their most widely used diagnostic system, and giving mental health professionals, researchers, and persons/family members affected by mental illness the opportunity to provide feedback and input.

It is a commendable initiative and undoubtedly reflects APA’s response to the requests of increasingly proactive advocacy groups for greater transparency and openness in the conceptualization of mental illness, as well as cognizance of the need to understand mental illness and the effects of diagnoses from the perspective of those impacted by them the most.

Whether and how professional and public input will impact the final version of the DSM-V scheduled for release in 2013 remains to be seen.
We have identified a number of elements in the interim draft of the DSM-V that we view as especially relevant to stigma in the context of the processes discussed in the previous sections. We present specific revisions suggested by the task force and briefly discuss them from the framework of mental illness stigma.

Autism spectrum disorders

The proposed new category will incorporate the current diagnoses of autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. The new category reflects recent advances in the field of autism and neurodevelopmental disorders showing that the symptoms of these disorders represent a continuum from mild to severe.

This proposed change is being criticized by advocacy groups of the disorders considered ‘‘less severe’’ who currently view their condition as distinct. For example, the Asperger’s Association of New England has written a letter to the DSM-V committee requesting that the Asperger’s syndrome label remains unchanged as it clearly differentiates people with this disorder from other people on the autism spectrum, and has come to take an important role in the way many individuals understand themselves, and explain their experiences to their families and communities.

Resistance to the new classification can be conceptualized
as fear of groupness and perceived homogeneity –
being viewed by the public as having much in common with
the more severe, highly stigmatized label of autism

To help reduce public backlash, it may be necessary to change the name of the new diagnosis so that it is not anchored in the most severe of the disorders on the continuum. It may be prudent, more clinically representative, and less potentially stigmatizing to focus on the actual dimensions being assessed (i.e. social interaction and communication, presence of repetitive behaviors and fixated interests).

New proposed conditions

With every updated edition of the DSM, new, more specified, diagnoses are added. This isperceived as a reflection of advances in the scientific examination of mental illnesses andimprovements in clinical assessment and symptom identification. For the upcoming DSM-V,there are a number of proposed diagnostic labels including apathy syndrome, complicated griefdisorder, parental alienation disorder, melancholia, and more.

We would like the reader to consider that along with the potential treatment gains that may be associated with these new diagnoses, there is also the risk of pathologizing what are essentially individual differences and diversity in human behavior. While some diagnostic labels offer relief, normalization, and a possible sense of shared destiny and community with others suffering from similar conditions, not all deviations from the norm in terms of affect, interpersonal functioning, and coping constitute a disorder.

For example, different people will have different idiosyncratic patterns of coping with the loss of a loved one that will undoubtedly be influenced by their cultural background, social context, and nature of the relationship with the individual.

Although these coping behaviors may be personally adaptive for the bereaved, they might be difficult for an outside observer to understand or assess. By introducing more and more diagnoses, we may narrow what is considered the range of ‘‘healthy functioning’’ to the point where few if any people meet such strict parameters.
Non-suicidal self-injury is an example of a proposed new DSM-V diagnosis that assigns adiagnostic label to a particular behavior (including its purpose). Although there is little doubt that this behavior is pathological, it is problematic to consider a behavior a disorder.

Diagnostically labeling people based on a particular behavior will increase groupness, thereby suggesting the homogeneity of those who engage in non-suicidal self-injurious behavior and their distinction from both those with other disorders and the general public. It also will suggest that there is something stable that characterizes these individuals, as opposed to emphasizing a behavior that varies over time and may, in fact, completely disappear.

Through both increasing beliefs of homogeneity and stability, this new diagnosis is likely to increase both public stigma and self-stigma. In addition, in order to avoid this labeling, people engaging in non-suicidal self-injurious behavior may under report the frequency and severity of their actions, or avoid entering treatment altogether.


Diagnostic labels have clear clinical and research utility, but may have a number of negative
implications for public stigma, self-stigma, and active label avoidance in people with mental illness. Through socio-cognitive processes of groupness, homogeneity, and stability, stigmatizing diagnostic labels may impact housing and job opportunities, as well as individuals’ selfesteem, self-efficacy, and treatment utilization.

Initial drafts of APA’s DSM-V show a
commendable trend of greater transparency and movement toward more dimensional approaches to diagnosis which may help reduce stigma in the future, but also include a number of proposals that may have a negative impact on stigma. Ultimately, clinicians using the DSM system need to be cognizant of potential stigma related pitfalls associated with generating summarizing diagnostic labels, and make continuous efforts to educate their patients and the public about these issues.

My thoughts on Stigma are:

We often tend to "stigmatize" everyone viewed all "less" than we are. Within Autism, the "less" are thought to be the severely autistic and the "more" are the Aspergers!

I feel there is no less or more in Autism. We are all autistics (whether diagnosed as severe or mild or ligh functioning or Asperger) as we all share the same brain structure and way of viewing the world around us. Whether some autistics have the ability to speak, or have the ability to solve complicated mathematical equations, it does not mean that they have a less or more form of Autism. One IS autistic, one does not have (a degree of) Autism.

One IS autistic because all autistics are born with the same fundamental sameness of brain structure and brain function that is different from the non-autistic brain. In a way autistics are the brain "Blacks" or brain "Asians", they differ in the brain area as blacks differ from whites in the skin area, or Asians differ from Europeans in the eye-shape area!

It is NOT an illness to have black skin or almond-shaped eyes, as it is not an illness to have an autistic brain. Some differences are external (skin color, eye-shape, etc) some differences are internal (brain function, point of view, social skills, etc.). When will science realize this simple fact???

So, lets stop this on going stigma of Autism and the autistics. We are not mentally ill to begin with, so Autism does not even belong in the DSM!!!

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