Sunday, March 20, 2011

Those Two Words That Have Haunted Me!

It was a warm day in April, 2001 when I first heard these words describing my son....mentally retarded. I had taken him for testing through our school district referred by ECI....Early Childhood Intervention Services. When the diagnostician was going over the results, she said many many things...."scored very low", "couldn't stack the blocks", "didn't do this", and "didn't do that"; but the one thing that I remember is the following: "His test scores are those of a person who is mentally retarded!" I knew there were issues with Cal, and I knew he was very delayed; but I never expected to hear those words describing my son. I remember staring hard at the diagnostician's face when she was explaining everything while Cal sat in my lap fiddling with a block. She told me he would need to start summer school through the district that summer, because he was not old enough to start receiving services right away. I didn't quite understand the urgency, because at that time; I had no idea how important early intervention truly is to a child who is so delayed. I thanked her, got up and walked out carrying him and holding him tight. Once he was buckled in, I got into the driver's seat and began to dial. As soon as NPayne's voice answered on the other end, I began to sob. I told him about the testing, most of the results, and the "mentally retarded" score; and I'll never ever ever forget what he said. He said, "You know that's not true!" Then he said something along the following: You know he can do many of those things she said he couldn't! You know he doesn't separate well from us...especially to do testing! You know that he's smart! And I did know that the test might not be completely accurate, but I also knew....deep down in my soul....that much of what she had said was true. It was another year and a half before we started suspecting Autism and another two years before he was actually diagnosed with Autism and Fragile X. Even after Cal was diagnosed, I still never agreed with the label of mental retardation; BUT....I have to admit that I had never even looked up a definition of it until about 3 weeks ago. I had researched Autism and Fragile X until I was blue in the face but never mental retardation. I had always assumed mental retardation was due to a brain injury of some kind caused by a multitude of reasons. As far as I knew, my son had never suffered any brain trauma. But then about 3 weeks ago, I received a phone call from his school's diagnostician. As she was going over the test results from his 3 year state mandated re-evaluation, she said something that I thought was progress. She told me that she had been able to actually do an IQ test on Cal. They had never been able to do this test with him before, because of his behavior and actual academic capabilities. Then she said it...."I'm very happy that we were able to do the IQ test, but he did score in the mentally retarded range. He scored a 45." There were those words again....why did people keep referring to his scores as that of a mentally retarded child? Then I actually took the time to look it up and do a little research.

Mental retardation (MR) is a generalized disorder appearing before adulthood, characterized by significantly impaired cognitive functioning and deficits in two or more adaptive behaviors. It has historically been defined as an Intelligence Quotient score under 70.[1]Once focused almost entirely on cognition, the definition now includes both a component relating to mental functioning and one relating to individuals' functional skills in their environment. As a result, a person with a below-average intelligence quotient (BAIQ) may not be considered mentally retarded. Syndromic mental retardation is intellectual deficits associated with other medical and behavioral signs and symptoms. Non-syndromic mental retardation refers to intellectual deficits that appear without other abnormalities.

Mental retardation is a subtype of intellectual disability, although that term is now preferred by most advocates in most English-speaking countries as a euphemism for MR. However, intellectual disability is a broader concept and includes intellectual deficits that are too mild to properly qualify as mental retardation, too specific (as in specific learning disability), or acquired later in life, through acquired brain injuries or neurodegenerative diseases like dementia. Intellectual disabilities may appear at any age.

Developmental disability is any disability that is due to problems with growth and development. This term encompasses many congenital medical conditions that have no mental or intellectual components, although it, too, is sometimes used as a euphemism for MR.[2]

Signs and symptoms

The signs and symptoms of mental retardation are all behavioral. Most people with mental retardation do not look like they have any type of intellectual disability, especially if the disability is caused by environmental factors such as malnutrition or lead poisoning. The so-called "typical appearance" ascribed to people with mental retardation is only present in a minority of cases, all of which involve syndromic mental retardation.

Children with mental retardation may learn to sit up, to crawl, or to walk later than other children, or they may learn to talk later.[3] Both adults and children with mental retardation may also exhibit some or all of the following characteristics:[3]

Children with mental retardation learn more slowly than a typical child. Children may take longer to learn language, develop social skills, and take care of their personal needs, such as dressing or eating. Learning will take them longer, require more repetition, and skills may need to be adapted to their learning level. Nevertheless, virtually every child is able to learn, develop and become a participating member of the community.

In early childhood, mild mental retardation (IQ 50–69, a cognitive ability about half to two-thirds of standard) may not be obvious, and may not be identified until children begin school.[3] Even when poor academic performance is recognized, it may take expert assessment to distinguish mild mental retardation from learning disability or emotional/behavioral disorders. People with mild MR are capable of learning reading and mathematics skills to approximately the level of a typical child aged 9 to 12.[3] They can learn self-care and practical skills, such as cooking or using the local mass transit system.[3] As individuals with mild mental retardation reach adulthood, many learn to live independently and maintain gainful employment.

Moderate mental retardation (IQ 35–49) is nearly always apparent within the first years of life. Speech delays are particularly common signs of moderate MR.[3] People with moderate mental retardation need considerable supports in school, at home, and in the community in order to participate fully. While their academic potential is limited, they can learn simple health and safety skills and to participate in simple activities.[3] As adults they may live with their parents, in a supportive group home, or even semi-independently with significant supportive services to help them, for example, manage their finances. As adults, they may work in a sheltered workshop.[3]

A person with severe or profound mental retardation will need more intensive support and supervision his or her entire life.[3] They may learn some activities of daily living. Some will require full-time care by an attendant.[3]


Among children, the cause is unknown for one-third to one-half of cases.[3] Down syndrome, velocariofacial syndrome, and fetal alcohol syndrome are the three most common inborn causes.[3] However, doctors have found many other causes. The most common are:


According to the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV),[10] three criteria must be met for a diagnosis of mental retardation: an IQ below 70, significant limitations in two or more areas of adaptive behavior (as measured by an adaptive behavior rating scale, i.e. communication, self-help skills, interpersonal skills, and more), and evidence that the limitations became apparent before the age of 18.

It is formally diagnosed by professional assessment of intelligence and adaptive behavior.

IQ below 70

The first English-language IQ test, the Terman-Binet, was adapted from an instrument used to measure potential to achieve developed by Binet in France. Terman translated the test and employed it as a means to measure intellectual capacity based on oral language, vocabulary, numerical reasoning, memory, motor speed and analysis skills. The mean score on the currently available IQ tests is 100, with a standard deviation of 15 (WAIS/WISC-IV) or 16 (Stanford-Binet). Sub-average intelligence is generally considered to be present when an individual scores two standard deviations below the test mean. Factors other than cognitive ability (depression, anxiety, etc.) can contribute to low IQ scores; it is important for the evaluator to rule them out prior to concluding that measured IQ is "significantly below average".

The following ranges, based on Standard Scores of intelligence tests, reflect the categories of the American Association of Mental Retardation, the Diagnostic and Statistical Manual of Mental Disorders-IV-TR, and the International Classification of Diseases-10[citation needed]:

Profound mental retardationBelow 20
Severe mental retardation20–34
Moderate mental retardation35–49
Mild mental retardation50–69
Borderline intellectual functioning70–84

Since the diagnosis is not based only on IQ scores, but must also take into consideration a person's adaptive functioning, the diagnosis is not made rigidly. It encompasses intellectual scores, adaptive functioning scores from an adaptive behavior rating scale based on descriptions of known abilities provided by someone familiar with the person, and also the observations of the assessment examiner who is able to find out directly from the person what he or she can understand, communicate, and the like.

Significant limitations in two or more areas of adaptive behavior

Adaptive behavior, or adaptive functioning, refers to the skills needed to live independently (or at the minimally acceptable level for age). To assess adaptive behavior, professionals compare the functional abilities of a child to those of other children of similar age. To measure adaptive behavior, professionals use structured interviews, with which they systematically elicit information about persons' functioning in the community from people who know them well. There are many adaptive behavior scales, and accurate assessment of the quality of someone's adaptive behavior requires clinical judgment as well. Certain skills are important to adaptive behavior, such as:

So I guess that explains where that "diagnosis" for lack of a better word comes from.

No comments: