Mental Retardation versus Brain-injury

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Who Is Brain-Injured? http://www.iahp.org/Who.62.0.html

If everyone could simply agree on what is meant by the various terms used to

describe brain-injured children, we'd be a long way along the road to solving

such problems.

Confusion of terminology is certainly a problem in the world of the

brain-injured child. That's why this book is entitled What To Do About Your

Brain-Injured Child, or Your Brain-damaged, Mentally Retarded, Mentally

Deficient, Cerebral-palsied, Epileptic, Autistic, Athetoid, Hyperactive,

Attention Deficit Disordered, Developmentally Delayed, Downs Child. Now that,

admittedly, is a terrible name for a book, and all you can say is, " What the

devil does that mean? "

That is exactly what I'd hope you'd say because that's exactly the question

that needs asking. What the devil do all those words mean?

If you are the parent of a brain-injured child, you have surely heard all of

these words. It is quite possible that different specialists have given your

child most or even all of these names. We see tiny children who have been

diagnosed as every one of those things, each in a different institution, and

when I look at a tiny two-year-old child I wonder if it is really possible for

one little girl to have so many terrible diseases-if diseases they are.

Just what do these terms mean? Are brain-damaged children the same as mentally

retarded children? Are all such children emotionally disturbed, or is that a

different problem? What of children with cerebral palsy? Is this one kind of

condition when the child is bright, and something else when he is mentally

retarded? Are all cerebral palsy children spastic, flaccid, rigid, or all three?

Always? Sometimes?

Just what do these terms mean? Do they mean what they say? If they don't mean

what they say, then what do they mean?

Let's take the term emotionally disturbed. Many brain-injured children are

diagnosed as being emotionally disturbed. What does this term mean? Is it

intended to replace brain injury as a diagnosis; that is to say, is this child

emotionally disturbed rather than brain-injured? Or is he suffering from two

different diseases simultaneously? Just what disease is emotionally disturbed,

or is it, in fact, a disease at all? What does the term mean? If it means what

it says-emotionally disturbed-then I can say that I, one of the most fortunate

of men, find myself emotionally disturbed twenty or thirty times a day about one

thing or another. I have a sneaky suspicion that you do, too. I don't believe

that anyone in his right mind could read the front page of any large

metropolitan newspaper without being emotionally disturbed over virtually every

front-page story. At least he should be emotionally disturbed if emotionally

disturbed means what it says. On the other hand, if the

term emotionally disturbed as used to diagnose brain-injured children does not

mean what it says, then the overriding question which remains is: What does it

mean?

Or let's take what is probably the best-known term: Cerebral Palsy. Cerebral

means brain and palsy means paralysis. To some people palsy means to shake.

Since the brain can neither shake nor be paralyzed, the term cerebral palsy

clearly does not mean what it says. The question then is-what does it mean?

One great authority on the subject of cerebral palsy has said that cerebral

palsy means a highly specific set of symptoms produced by a highly specific and

specifically located type of brain injury. Fair enough, and that would do for a

term and a diagnosis were it not for the fact that another great authority has

said that cerebral palsy means a very different thing. He has said that cerebral

palsy is anything that happens to a child from the neck up. Also fair enough, if

it were not for the first authority. Unhappily this disagreement does not end

with these two authorities. There are virtually as many different meanings as

there are authorities in the field, and there are many authorities.

Nor does refinement of terms necessarily help.

The term cerebral palsy can be broken down into several different

sub-categories, one of which is athetoid cerebral palsy. In some classifications

this term is then broken down further into sub-terms describing ten or twelve

types of athetoids. Dr. Fay, who had personally authored or co-authored several

classification methods in an early attempt to bring some order out of chaos,

used to say rather ruefully that there were actually only two types of

athetoids. The two types, Dr. Fay used to say, were " them as had it and them as

didn't. " That reduced the types of athetoids rather considerably. We come, in

the end, to agree with Menninger that " refining the terminology " added to the

confusion rather than to the clarification.

The trouble with almost all of the names we have discussed and the many others

that exist is every time we use them we are compounding the easy error of

mistaking the symptom for the disease.

A good example is the very popular term " mental retardation. " An American

adult would have to be not only televisionless and radioless, but deaf and blind

as well, not to have heard this term over and over again. " Mental retardation

can strike any home. " " Every two minutes a child is born afflicted with mental

retardation. " " Fight mental retardation. " " Give money for research into the

cause of mental retardation. " " This child is a victim of mental retardation. "

Doesn't all this leave the impression that there is a disease called " mental

retardation? " There is no such disease. Mental retardation is a symptom and,

like most other symptoms, is a symptom of many very different diseases. One can

have the symptom, mental retardation, because his mother and father have

incompatible Rh factors. One can have the symptom, mental retardation, because

he got hit by an automobile. One can have the symptom, mental retardation,

because he was born with the umbilical cord wrapped tightly around his neck. One

can show the symptom, mental retardation, because he had measles, which resulted

in encephalitis, and so on through a hundred very different diseases and

injuries that can result in the symptom of severe, moderate, or mild mental

retardation.

To talk about mental retardation as if it were a disease is not only

unscientific but, what is more important, seriously delays the finding of

rational answers to problems. Because this point is so important, I must risk

belaboring it to be sure I have made myself clear. Let's take a clear and fairly

precise analogy.

Let's suppose that today someone should announce that he has discovered that

seven million Americans have a Fever and that this condition can be as serious

as it is mysterious. Suppose that he should announce that this mysterious

illness of elevated temperature, or Fever, ranged in effect from a mild

inconvenience at one end of the spectrum to actual death at the other and that

this very day hundreds of Americans would die afflicted with Fever. Suppose he

announced that every eight seconds an American was born who would someday be

afflicted with fever. Suppose finally he announced that he had just found out

that there was no American Fever Society and that he was going to raise millions

of dollars to organize such a society for the purpose of combating the killer,

Fever.

If that should happen, it is to be hoped that someone would say to this man,

" Each of the things you have said is true. You are obviously motivated by the

highest and most selfless intentions, but you must not do this. While each of

the things you have said is true, the conclusion you have drawn is untrue. Fever

is not a disease but is instead a symptom of many different and unlike diseases

or injuries. If you form such a society you will convince many people, and even

some professionals, that there is actually such a disease. This will hide the

truth and, in the end, be a disservice to mankind. "

This is what has actually happened as a result of the popularization of that

very imprecise term, mental retardation.

Mental retardation is no more and no less a symptom than is fever; neither

symptom is a disease. If one successfully attacks the disease of which fever is

a symptom, the fever will disappear spontaneously, as is the case with the

symptoms in other diseases. By the same token, if one successfully attacks the

brain injury of which mental retardation can be a symptom, the mental

retardation will also disappear spontaneously.

How did this term arise and what does it actually mean?

Most people use the term, mental retardation, to describe children who do not

learn as quickly or are not able to learn as much as average children. The

symptom of mental retardation can be present in a child because of the

combination of genetic factors. This is true in only a fraction of the children

who have the symptom.

The term mental retardation was coined in an effort at kindliness. So many

human problems begin with someone saving someone else from something he hasn't

asked to be saved from. Before the term mental retardation was coined as a

subterfuge to protect parents from what was considered to be too harsh a truth

(harsh it was, truth it was not), we measured intelligence that fell below

average (100 being average or normal) and, having done so, we classified

sub-normal children into groups according to their scores, and such groups were

called morons, idiots, or imbeciles.

Since it seemed very harsh to tell a parent that her child was a moron, idiot

or imbecile, society invented a euphemism, " mental retardation " . This term, in a

literal sense, was a splendid choice, which labeled the problem quite well. It

is what was eventually done with this good, but symptomatic, term which was the

problem. It did not take parents long to come to the conclusion that it was not

a compliment to be told that their child was mentally retarded and that what

this term really meant was that their child was a moron, idiot, or imbecile.

The parents were not fooled, but now professionals had at least two diseases,

idiocy and mental retardation.

It took several years for those who dealt with the parents to come to the

conclusion that mental retardation meant idiot to most parents, and so an even

newer term was coined which was an even greater euphemism. This new term to

describe children with below-average intelligence was exceptional. To call a

child with a low I.Q. exceptional was again literally true, but what a splendid

euphemism it was. To say that such children were exceptional children rather

implied that such children were somehow better than other children.

Again the parents were neither flattered nor deceived by such terms. Parents

know precisely what their children can and cannot do. Parents very quickly

decided that it was not good to be told that their children were exceptional.

They decided that what that really meant was mentally retarded and what that

really meant was moron, idiot or imbecile.

Again parents were neither deceived nor mollified, but now we professionals

had at least three diseases-idiot children, mentally retarded children, and

exceptional children.

Mental retardation is not a disease, it is a symptom. Idiot, emotionally

disturbed, flaccid, spastic, quadriplegic, paraplegic, hemiplegic, diplegic, and

a host of other terms by which brain-injured children are called, are all

symptoms and none of them are diseases.

We do not believe that it is helpful to say that there are hundreds of

different categories of children whose problems exist within the brain. We have

learned how to help those children who are brain-injured. We do not know how to

help children who are not brain-injured. Perhaps, one day we will have answers

for all children. We believe that all the children we see can be placed in three

simple categories:

I. Children with peripheral problems

II.Children with psychological problems

III.Children with brain injury

I. Children with Peripheral Problems

It is important to recognize that the nervous system consists of two main

parts-the central nervous system (CNS) and the peripheral nervous system (PNS).

The central nervous system consists of the brain and spinal cord.

Some individuals have problems due to disorders that are outside the central

nervous system or brain. These disorders may include conditions affecting the

peripheral nerves, neuromuscular junction, or muscle. These people may have

motor or sensory problems, but the cause is not in the central nervous system or

brain itself. An example of such a condition is peripheral neuropathy, which may

present itself with motor or sensory symptoms. Some individuals have a

neuromuscular junction disorder. They can also have weakness, but the weakness

is due to a problem at the junction between the nerve and muscle, not due to a

brain injury. Some individuals have a muscular dystrophy, or muscle disease.

These people may also have weakness, but in this case the weakness is due to the

muscle, not the brain. Sometimes central nervous system and peripheral nervous

system problems co-exist.

The Institutes program is intended for individuals with central nervous system

disorders. It is not intended for individuals with problems exclusively due to

peripheral nervous system disorders, neruomuscular junction diseases, or muscle

diseases. In most cases, these problems have been identified beforehand.

II. Children with Psychological Problems

In some cases, a previously well child with no past history of a structural

brain injury will develop psychological, emotional or behavioral problems.

Scientists and doctors are trying to understand the complex biological or

chemical changes that may occur in the brain, accompanying some of these

conditions. Some of these children may benefit from programs emphasizing good

nutrition, elimination of allergies and detoxification. Programs focusing on a

good physiological environment and programs for social, physical and

intellectual excellence may also be of helpful.

Many children with brain injury have what society has called " psychological " ,

" emotional " , or " behavioral " problems. Some of these children may even be said

to be " psychotic " . The brain runs everything in the body. Some children who have

been diagnosed as " psychotic " are not psychotic at all but brain-injured. When

this is the case as the brain responds to neurological treatment, these

behavioral problems resolve.

III. Children with Brain Injury

When we at The Institutes for Achievement of Human Potential speak of a

brain-injured child, we mean any child who has had something happen to hurt the

brain. That something may occur at any time. It may occur at conception, or a

minute, an hour, a day, a week, a month, or nine months after conception. It may

occur during birth or a minute, an hour, a day, a week, a month, a year, or ten

years after birth. It may also happen seventy years after birth, only then he is

called a brain-injured adult.

If you could look at the injured brain in the operating room, you might even

be able to see the injury which could consist of highly visible harm confined to

a small area, or of harm essentially invisible to the naked eye and spread over

a broader area. In some cases, the problem may only be seen under a microscope.

In some cases the disorder is at the level of cellular function and may not be

able to be seen at all with current technology. In some cases, brain studies,

brain imaging, electroencephalograms (EEGs), evoked potentials or other tests

may be abnormal. In other cases, these studies may be unremarkable. The brain

may be severely hurt or it may be mildly hurt. It may be hurt in a way that

limits walking or talking or hearing or seeing or feeling, or a combination of

these.

Sometimes different injuries have occurred to a child at different times.

Sometimes the child will have a clear-cut cause for the brain injury, such as a

major trauma or infection. Sometimes no clear cause for the brain injury will be

found. When this book speaks of the brain-injured child, it means a child who

has a hurt brain from one of, or some of, any number of causes. Although

sometimes the causes may be similar, each case is unique because it effects a

unique individual-a child with his own unique potential.

1. The Acutely Brain-injured Child: Some children have brain injuries due to

causes that require immediate or emergency medical or surgical treatment. These

injuries may be due to an infection, hemorrhage, tumor, trauma, progressing

hydrocephalus or one of a number of conditions that need to be acutely addressed

to insure the survival of the child and to limit the harm done to the brain.

This care is usually given in an emergency or hospital setting. After this acute

stage, the child may be left with residual brain injury. The brain-injured child

may have various degrees of problems in walking, talking, hearing, seeing,, or

feeling. When left untreated, these problems may become chronic or permanent. We

see the brain-injured child after the acute and life-threatening problems have

been managed and stabilized. It is important that this child receives treatment

as soon as possible to help speed recovery. However, even those who have been

brain-injured for many years can

benefit from treatment.

2. The " Mentally Deficient " Brain-injured Child: Formerly called " mentally

deficient " , this child is one in which there is a malformation or abnormality of

the brain. This may be on the basis of a genetic disorder such as Down syndrome,

or due to any number of problems that can effect the development of a child's

brain before birth. There may be malformations of other organs or other body

features as well. At one time it was thought that children with brain

malformations or genetic problems would not benefit from treatment. Many were

confined to mental institutions for life. We have had many brain-injured

children on our program who have had CT or MRI scans that show abnormalities of

brain development. These malformations can include gyri (convolutions) that are

too big or too small, or lobes of the brain or other structures that are

malformed or missing. We have also seen children with abnormalities of gray or

white matter development, sometimes referred to as

heterotopias or migrational disorders. We now know that although the brain may

appear structurally different, it will respond to stimulation and treatment.

These children are candidates for a neurological treatment program.

3. The Brain-injured Child with Neurodegenerative Disorders: Children with

neurodegenerative disorders may have diseases or conditions that cause the

progressive destruction of the brain and nervous system. In some cases, a

metabolic factor or some other problem can be found which may be modified by

nutrition, or by altering the physiological environment of the brain. This

allows us the opportunity to treat the residual brain injury. In other cases, a

disorder may be causing rapid relentless destruction of the brain and nervous

system. Fortunately, such cases are rare. In such cases, we may not be able to

make a significant impact with our program.

Brain injury can occur at any time. Brain injury can be due to any of a number

of causes. Sometimes the cause of the brain injury is not fully understood.

Sometimes, brain-injured children will be given labels by medical professionals,

educators or society. Those labels are not diseases but symptoms of one

problem-brain injury.

There are literally millions of brain-injured children. I might paraphrase

Abraham Lincoln, and I am sure he would not mind in the least if I said that

" God must have loved the brain-injured children because he made so many of

them. "

These brain-injured children are wonderful kids, they need and deserve our

help. We now know that a program of neurological organization will yield results

in most brain-injured children. In the future, perhaps there will be answers for

all brain-injured children.

by Glenn Doman, from What To Do About Your Brain-Injured Child.

http://www.iahp.org/Brai.205.0.html

These old-fashioned labels are not found in the literature of The Institutes

but rather the term " brain-injured " . This refers to the entire spectrum of brain

injury from profound coma to mild learning problems and every kind and degree of

brain injury in between.

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