However, the Institute for Quality and Efficiency in Health Care (IQWiG) could not find any proof of benefit from language screening before their 6th birthday for children with a specific developmental disorder of speech and language. At present, there is a lack of screening studies and also of reliable diagnostic instruments. This is the conclusion in the final report, which IQWiG published on 17 August 2009.

No study exists on screening for specific developmental language disorders

Out of the studies that IQWiG identified on early detection of language disorders, there were none that investigated in particular the effects of language screening on children of preschool age with specific developmental disorders in speech and language. IQWiG therefore included in its investigation an assessment of existing diagnostic instruments and interventions in order to answer the question of whether the necessary requirements for a screening programme are met in Germany.

Diagnostic instruments not adequately validated

Out of 17 German-language tests, there was none where the diagnostic quality was adequately investigated in relation to the indication of specific developmental language disorders. Diagnostic instruments would have to be more comprehensively validated – including, for instance, clarification of how many follow-up examinations and/or treatments would be expected after screening. A particular challenge of diagnosing lies in distinguishing between a potential disorder and normal course of development in very young children.

Few indications of short-term positive effects from therapy

In addition to the diagnostic instruments, the report also investigates the benefit of potential therapies, for which IQWiG was able to identify a total of 16 randomized controlled trials (RCTs). However, it was difficult to interpret the trial results: almost all trials were susceptible to bias. In addition, they were very heterogeneous as regards the type of therapy, the selection criteria, the degree of disorder, the intensity and duration of measure.

Children who received speech therapy displayed predominantly positive, short-term effects with regard to language development. The children who participated in intervention programmes improved their grammar, formed more complex sentences, expanded their vocabulary and sound and syllable repertoire, or were more articulate, for example.

However, there is very little research on whether these effects continue long-term, and whether the therapies also have a positive effect on the quality of life of the children, their psychosocial and emotional development, and school performance. The studies did not investigate whether the treatment might also have adverse consequences.

There are also no indications or proof that the therapies have a greater benefit in younger children than in older children. None of the therapy studies analysed investigated the effects of an early start to therapy, for example at 3 years of age, as opposed to starting therapy at 6 years of age. Thus, no conclusion can be drawn from the identified studies on the optimal timing for speech therapy treatment.

Requirements for the introduction of a screening programme are not met

According to IQWiG, there is currently a lack of methodological fundament in Germany necessary to introduce universal screening for specific developmental disorders of speech and language. Extensive scientific research therefore needs to be carried out. There is firstly a need for research into validating a screening test (including subsequent diagnosis). Only then would it be possible to investigate the effects of this type of screening and to compare that with the procedure used up till now in child development check-ups.

In addition, the question whether potential therapeutic effects continue in the longer term has to be investigated. Not only the potential benefit of screening but also its potential harm must be considered here. For example, if a child was falsely diagnosed as having a language disorder, this would constitute a harm. This could have a negative impact on the parent-child relationship or involve a time-consuming therapy that produces no benefit to the child.

Report preparation procedure

IQWiG published the preliminary results in the form of the preliminary report in November 2008 and interested parties were invited to submit comments. When the comments stage ended, the preliminary report was revised and sent as a final report to the contracting agency, the Federal Joint Committee, in mid-June 2009. Documentation of the written comments and minutes of the oral debate are published in a separate document simultaneously with the final report. The report was produced in collaboration with external experts.

“Currently, we don’t have very effective means of treating people with anorexia,” said Kaye. “Consequently, many patients with the disorder remain ill for years or eventually die from the disease, which has the highest death rate of any psychiatric disorder.”

A better understanding of the underlying neurobiology how behavior is coded in the brain and contributes to anorexia is likely to result in more effective treatments, according to the researchers.

Childhood personality and temperament may increase an individual’s vulnerability to developing anorexia. Predisposing factors, some suspected to be inherited, such as perfectionism, anxiety, or obsessive-compulsive tendencies may precede the onset of an eating disorders. These traits become intensified during adolescence as a consequence of many factors such as hormonal changes, stress and culture.

“Adolescence is a time of transition, when individuals must learn to balance immediate and long-term needs and goals in order to achieve independence,” said Kaye. “For such individuals, learning to cope with mixed societal messages and pressures may be overwhelming, exacerbating underlying traits of anxiety and a desire to perfectly achieve.”

Once a patient develops anorexia, starvation and malnutrition cause profound effects on the brain and other organ systems. Such changes include neuro-chemical imbalances, which may, in turn, exaggerate the preexisting traits and accelerate the disease process.

“Individuals with anorexia tend to report that dieting reduces anxiety, while eating increases it,” said Kaye. “This is very different from most individuals, who experience hunger as unpleasant.” The powerful drive to avoid being anxious drives actually weight loss in anorexia nervosa, triggering the out-of-control spiral that results in severe emaciation and malnutrition.

In addition, people with anorexia nervosa tend to not experience pleasure or live “in the moment.” They often have exaggerated and obsessive worry about the consequences of their behaviors, looking for rules when there are none, and are overly concerned about making mistakes. Co-author Julie L. Fudge of the Department of Psychiatry & Neurobiology and Anatomy at the University of Rochester Medical Center, notes that imaging studies suggest that individuals with anorexia have an imbalance between circuits in the brain that regulate reward and emotion (the ventral or limbic circuit) and circuits that are associated with consequences and planning ahead (the dorsal or cognitive circuit.)

“Brain-imaging studies also show that individuals with anorexia have alterations in those parts of the brain involved with bodily sensations, such as sensing the rewarding aspects of pleasurable foods,” said co-author Martin Paulus, UC San Diego professor of psychiatry, who heads UC San Diego’s Laboratory of Biological Dynamics and Theoretical Medicine. “Anorexics may literally not recognize when they are hungry.”

One such brain region is the anterior insula, which is critically important for interoception, or the self-awareness of internal body signals. In addition to a failure to respond appropriately to signals of hunger, symptoms of anorexia such as distorted body image and diminished motivation to change could be related to disturbed interoceptive awareness.

“Anorexia is very complicated, and there needs to be a paradigm shift in understanding its underlying cause,” said Kaye. “We’re just beginning to understand how the brain is working in people with this disorder.”

Kaye noted that the temperament and personality traits that may create a vulnerability to develop anorexia may also have a positive aspect. These traits include attention to detail, concern about consequences, and a drive to accomplish and succeed. “It’s my clinical experience that many individuals who recover from anorexia do well in life,” he said.

Under Kaye’s leadership, the eating disorders treatment program at UC San Diego is developing treatments based on understanding the temperament and personality that drives anorexia, and helping patients to use such traits in constructive, rather then self-defeating ways.

Symptoms of the disease anorexia nervosa, more commonly known as anorexia, include the patient’s refusal to maintain body weight at or above a minimally normal weight for age and height; and intense fear of gaining weight or becoming fat, even when the individual is underweight. Although anorexia is characterized as an eating disorder, it remains unknown whether there is primarily a disturbance of appetite, or whether change in appetite is secondary to other issues such as anxiety or obsessional preoccupation with weight gain. When malnourished and emaciated, individuals with the disease have widespread and severe alterations of the brain and other organs. As it is unclear whether these changes are the cause of consequence of severe weight loss, individuals who have recovered from anorexia have been studied. While approximately 50% to 70% of affected individuals eventually recover, a significant proportion of patients develop a chronic illness or die, making anorexia the number one cause of death among psychiatric diseases.

Not only that, more than 60 percent of college students have disturbed sleep-wake patterns and many take drugs and alcohol regularly to help them do one or the other.

The study of 1,125 students appears online in the Journal of Adolescent Health. It found that only 30 percent of students sleep at least eight hours a night – the average requirement for young adults.

On weeknights, 20 percent of students stay up all night at least once a month and 35 percent stay up until 3 a.m. at least once a week. Twelve percent of poor sleepers miss class three or more times a month or fall asleep in class.

“Students underestimate the importance of sleep in their daily lives. They forgo sleep during periods of stress, not realizing that they are sabotaging their physical and mental health,” said study co-author Roxanne Prichard, an assistant professor of psychology at the University of St. Thomas, in St. Paul, Minn, where the study took place.

Impairments in the immune and cardiovascular systems are health risks associated with insufficient sleep, as is weight gain, Prichard said.

Daniel Taylor, an assistant professor of psychology at the University of North Texas, said, “We know little about the health of this age range even though the consequences – substance use, psychopathology, poor grades, dropout and subsequent unemployment – of sleep disturbance could be greatest.”

Of concern to researchers was the students’ tendency to use alcohol and drugs to regulate their cycles. Poor sleepers are more likely than good sleepers are to use medication to stay awake or fall asleep, and twice as likely to use alcohol to induce sleep. Alternating between stimulants and sedatives has been associated to a higher risk of addiction.

To the Autism Society of York, Pennsylvania:

The York, PA Autism Society has a well established history of working to
advance understanding and support for families in the York and Adams county
area. Your involvement with the HOPE playground, your extensive Spanish
language resource list and your other activities set positive examples for
other organizations throughout Pennsylvania. It is with this history of
positive efforts in mind that we are forced to express our grave concern
after having been contacted by a number of Autistic adults and family
members about your current billboard campaign depicting Autistic children as
kidnapping victims.

For decades, autism has been regrettably associated with fear and stigma. In
the early years of the autism community, Bruno Bettelheim’s characterization
of mothers of Autistic children as at fault for their child’s neurology
ruined lives. In later decades, the same fear, stigma and constant search
for blame persist even as science has discredited that particular causation
theory. As we, Autistic adults and youth ourselves, attempt to assert our
voices in the national conversation about us, we find ourselves
characterized by those who often speak on our behalf as though we are
burdens on society and individuals devoid of the full measure of personhood
and humanity. Such mischaracterization threatens our efforts to be included
in our homes, our schools, our communities and our collective society. By
making the autism message one of fear, stigma and hostage-taking rather than
one of civil rights, inclusion and support for all, our desire to be
recognized as full and equal citizens in our communities is hurt.

The use of stolen-child imagery is one of many common motifs in autism
awareness advertising. Unfortunately, it serves to send a message that
Autistic people are less than fully present in our own bodies and are less
than fully human. Such characterizations are frequently utilized to justify
violence, prejudice and segregation against Autistic adults and children.
The autism and Autistic communities deserve better than this.

It is due to these concerns that we respectfully request that the
“Kidnapped” bill boards be taken down. We stand ready to work with you, the
Autistic community of Pennsylvania, and any other interested parties to
formulate an ethical replacement that sends a message of hope and support to
Autistic people and our families rather than one of fear and dehumanization.
Whatever awareness these billboards may bring, it is more than outweighed by
the stigma and ignorance they add to a public conversation about autism that
is already too full of such things. We believe that, working together, a
better solution can be found.

Due to the public impact- locally and throughout Pennsylvania – we request a
response no later than three business days (Thursday, August 20th). I can be
contacted at aneeman@autisticadvocacy.org and by phone at 732.763.5530. Our
Pennsylvania director can be reached at srobertson@autisticadvocacy.org. We
request that you include him in your response.

Sincerely,

Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org

Only a few hours after our letter and thanks to the hard work of bloggers
like Joe at Club 166 <http://club166.blogspot.com/2009/08/could.html>,
Abfh<http://autisticbfh.blogspot.com/>,
Cracked Mirror in
Shalott<http://crackedmirrorinshalott.blogspot.com/2009/08/york-pa-asa-trying-to-mimic-ransom.html>
and
others who wrote in and called about the billboard campaign, ASA-York has
agreed to pull the billboards. This is a sign of the importance of working
together as a community to address issues like this. A year and a half ago,
it took the combined strength of 21 disability organizations from across the
country to have our voices be heard on a billboard campaign not dissimilar
to this one. Today, our community’s reputation for action and ethics has
grown to the point where we can bring about change much more rapidly. This
should serve as a reminder of the importance of a strong, united Autistic
community with a clear moral vision of a better future for Autistic people.
Small victories like this remind us of what we can accomplish by working as
one community on issues of every kind and size. Thank you to everyone who
took action and in particular to the members of the blogosphere who first
rallied the community around this. I encourage people to write to ASA-York’s
President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your
appreciation for their swift action to remove unethical advertising and to
encourage them to work with the Autistic community in the future.

Regretfully it has been brought to the attention of the Autism Society of
America – York Chapter – that our recent billboard campaign has caused
undesirable confusion within the community.  The intention of the billboard
campaign was aimed at generating awareness to the general public and was in
no way created to cause a malicious stir within the community.  As a parent
of a severely affected nine year old with Autism I can truly understand your
passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns.  I apologize for the
misunderstanding and want you to know we will promptly remove the billboard
posting.

Respectfully yours,

Amy Wallace