Dr Sterling Clarren's Keynote Address to the Yukon 2002 Prairie Northern Conference on Fetal Alcohol Syndrome

Please note that while all due care has been taken to accurately transcribe this address, errors or omissions may have occurred during the transcription process. NOFASARD takes no responsibility for these errors and this is transcribed in good faith. For purposes of the written rather than the spoken word, small changes in grammar and wording have been made.

NB When reporting on the Canadian/American situation and when using direct quotes from speakers, I have used the American spelling "fetal".

Biography of Dr Sterling Clarren

Dr. Sterling K. Clarren is the Robert A. Aldrich Professor of Pediatrics and past Head of the Division of Congenital Defects at the University of Washington School of Medicine in Seattle, Washington. He is currently the medical doctor for the University of Washington FAS Diagnostic and Prevention Network clinic and is the Director of Infant Inpatient Services for Children's Hospital and Regional Medical Center. He has been a faculty member since 1978.

Dr. Clarren received his BA from Yale University and his MD from the University of Minnesota. His post-graduate training in pediatrics and fellowship training in neuroembryology, teratology, and dysmorphology were all done at the University of Washington.

Fetal alcohol syndrome has been an important area of clinical and investigative research for Dr. Clarren since 1975. He has written broadly on the topic of establishing the definitions for fetal alcohol syndrome and fetal alcohol effects, in describing alcohol's impact on human and non-human brain structure and in developing a non-human primate model. He is currently working to establish a regional comprehensive clinic system for the diagnosis and treatment of FAS victims with the capacity to reach out to their mothers for the purpose of prevention of additional cases. He has frequently consulted on this topic and has testified before the United States Congress and the Washington State Legislature on the needs of FAS victims.

Dr. Clarren is a member of many academic associations. He is a fellow of the American Academy of Pediatrics and a member of the Academy's Executive Committee for the Children with Disabilities Section. He has been elected to fellowship in the American Association for the Advancement of Science. He is past president of the FAS study group for the Research Society on Alcoholism, past president of the West Coast Teratology Society, and a member of the Society for Pediatric Research, New York Academy of Science, the Teratology Society, to name only a few. He is an advisor to the National Organization for Fetal Alcohol Syndrome and the Children's Trust Foundation.

He has published over 100 research articles and has received research funding from the National Institute on Alcohol Abuse and Alcoholism, the Centers for Disease Control, the Glaser Foundation, and the March of Dimes.

Dr Clarren's Address

I was asked to start this Keynote Address with something hopeful and it wasn't clear to me until just now how to do that. The most hopeful thing is all of you sitting in this auditorium this morning. Five hundred people get all the way to Whitehorse!

I do a lot of teaching with residents and I remind the residents over and over and over again that the golden rule of medicine is not to help people – the golden rule of medicine is don't hurt them – do no harm. From Hippocrates to now that is our warning. It's very easy for people to think that by ignoring Fetal Alcohol Syndrome you are doing no harm. That is in fact the harm we do!

What we've been doing in the last twenty-five years and what you are hoping to reverse is the harm that we did to these patients. What is the most difficult of all to do? That which you think the simplest – to see with your own eyes what the world waves before you!

Our Native American friend speaks of children with FAS as messengers from the Creator helping us to see and she is absolutely right.

It really does take an awful lot of hard work. So what I would like to do today is to share with you two visions of things that we have been looking at and what we think we are seeing at this point in time and how those ideas will help us.

Let's start with the sale of alcohol. Alcohol is sold in many ways. One of the ways that alcohol is sold is with women in pictures with images of women. These images can be imagers of glamour, images of romance and images of sex and of course all of these things lead to babies which usually aren't in these pictures.

But they are in some of our pictures and after 25 years of pictures, public health warnings, books, magazine articles and a public awareness campaign which are would all agree is not that well thought out but is still impressive, it is probably safe to say that almost everybody knows that if mom drinks, baby drinks and that is somehow bad for babies.

It is probably very reasonable at this point to believe that the word is out there, but has it affected anyone's behaviour? Are women drinking less in pregnancy? Are babies being saved from FAS at this point? There is actually no evidence that that is true.

That's the first thing we really need to look at. There is something funny about that picture isn't there? How is it possible that this information is not affecting change? There must be a reason for that. We've got to understand that reason if we are going to move forward.

My colleague and I had an idea in 1995 that we would actually go and ask people about FAS and find out who are these moms. Why aren't they listening to the warning labels? What's different? Why isn't this rational? How is this possible?

And we obtained funding from the Centres for Disease Control and we used our FAS Clinic as a tool for this research. We said that every time we make a diagnosis of FAS there is a mom out there who has a child with FAS. We would just go and ask her what this is all about and why wasn't that already in the literature?

Because what we have found out as clinics have started up all over the country is that mothers with children with FAS aren't raising them!

It's becoming an actual experience in the US and Canada that only about 10% of birth mothers with children with FAS have them in their care.

One of these very interesting points of this whole condition is that they are making the babies and they are not raising them. Second very interesting point –they are still drinking and we get to take care of the babies.

Very interesting. And so in a traditional medical clinic where you report on what you see when people come through the door you can't do that with FAS because the moms aren't there. So the next question was – could we in fact just go and find them? We identified 160 children who had had a diagnosis of FAS during a specific period of time and we tried to find the mothers.

Eighty of the women (half of them) were easy to find although only eight of the women were caring for their children, the other 72 were known to their children. Forty more mothers were in the system and perhaps most disturbingly 25% of those women were either missing or dead. Do you know how many cancers have 25% death rate within three years of a diagnosis?

So we called these ladies up and we told them we were doing a study at the University of Washington on birth mothers of children who came to a developmental clinic. We asked them that we wanted to talk to them for about three hours and hopefully give them $75 and they all said "yes".

What we didn't tell them was that they were going to have to answer over 2,000 questions and it was going to take a lot of work but they dealt with it pretty well.

We got a huge amount of information. We published some of it and I think it will take more than out lifetime to put it all together but basically we looked at their demographics, their social network, we gave them an IQ test, we looked at their medical records, alcohol treatment, family planning – we just asked them a lot of questions.

First of all we learned that they drank all different kinds of liquor and as it is clear from the literature it doesn't matter whether you are a beer, drinker, wine drinker or spirit drinker – alcohol is the agent. They also used lots of other drugs. We live in a multi-drug culture at this point.

People who use lots of alcohol do tend to use other drugs – marijuana is the most common second drug followed by cocaine followed by speed. In different parts of the world different drug combinations are seen.

While alcohol is absolutely sufficient to damage the baby, individual women are doing worse than that:

The majority of these people were living at the poverty level and later on doing a little better but at the time we saw them, money was a problem.

They came from all ethnic backgrounds and the women in our study reflected the general population of people in Washington State. What was interesting was that there was an oversampling of Native American women and an undersampling of African Americans and that had to do, we think with the interest in Washington State in Native American population in this diagnosis and the concerns of the black population.

They had a wide range of education. I said that these ladies were poor that was true, but they were not necessarily slow. There was a larger than expected group that didn't finish high school but many people had finished college and gone beyond that.

IQ scores: It looks like a normal Bell shaped curve for intelligence but the whole curve moves downward so we had a few women whose scores were over 120 who were quite bright but we had too many women who were retarded and nearly retarded and that's a very important point. Why are there so many people with lower IQs? Who are the mothers of children with FAS? We've now learned as we have gone back to look, that these people frequently have FAS themselves. At this point, we estimate that about half of the mothers with children with FAS have FAS related conditions themselves.

When did they start drinking? At about 15. They are drinking maximally by 23, they are even trying to stop drinking by the time they are 26 – that's pretty interesting and now they are making the first kids after that! Again there is something else going on here besides telling these people to stop drinking. These people have had a long history of drinking, they've even tried to stop drinking but they're still drinking! It's a little bit more than just putting a warning label on a bottle of beer.

In this complicated slide, emotional abuse, physical abuse and sexual abuse is listed. The black line is lifetime abuse in that category, the white is abuse before age 18 and erased after 18 and the black is the summary. One hundred percent of these people were seriously abused. It was a 8universal experience. The sexual abuse stories were so horrible that the nurse who did these interviews generally needed therapy herself after she completed these interviews. These folks had really been abused.

They had also visited the mental health professionals and they had a number, their charts were weighted with psychiatric and psychological evaluations and diagnoses. They were all alcoholics so they should have had a diagnosis of substance abuse but what was ironic was that only 95% had that. So someone had missed the fact they were alcoholic 5% of the time. I just told you that they were all dramatically abused its not surprising that 90% of them had Post Traumatic Stress Disorder (PTSD) – so far so good! But we were surprised that the same number had major depression and a large group of people had phobias. The most common phobia was agoraphobia –they were afraid to leave home and get services. Anxiety, mania, bulimia and schizophrenia. We talk in the mental health word of co-morbid conditions where someone has more than one diagnosis in the Diagnostic and Statistic Manual (DSM). There are a number of co-morbid diagnoses in these people's charts. The most diagnoses a person can get on Axis 1 in the DSM is 10. Four of these women had 10 diagnoses. The average person had three or four.

Finally why did they not want to reduce their drinking? It helped them to cope! They were too stressed, they were uncomfortable about the problems, they were in abusive relationships. Alcohol was their treatment drug of choice.

Why didn't they want to get treatment? They didn't want to stop drinking! They didn't have anyone to leave their kids with. They were afraid they would lose their kids. Their partner wasn't supportive. It was too expensive. They didn't have insurance. The social net wasn't there. But when did they seek services and professionally get them? Ninety five percent of these women effective sought and got services during pregnancy!

They get medical care and prenatal care when they are pregnant. That's when we take care of them! They get pregnancy, we drive them to the doctor. They get pregnant - we give them support. They get pregnant and we take their baby away from them and they don't get any support until they get pregnant again!

Everyone has the little anecdote where they walk into the hospital room where someone has just given birth to their sixth, seventh or eighth child and someone says "Why do you keep making these babies?" And the mother says "Because they keep taking them away from me!" That's what we didn't see – that's the answer!

So who are our mums? They are our patients. They have a universal experience with serious abuse. They have mental health disorders. They have limited social supports and half of them have organic brain damage at the bottom when you try to clear up the rest of it.

It seems to us in Washington that alcohol is being used as a drug treatment of multiple complex problems and it seems to us that pregnancy is a partial intervention for these problems.

And we have never met a woman who drank through her pregnancy to hurt her baby. I don't think she exists.

Now doctor –what can you do about this? Well it turned out these ladies made a total of 272 children when we last stopped counting. But they made 61 of those children after the birth of the child with FAS was diagnosed. And we diagnosed these kids at all ages. So whenever we got to those moms, 25% of their children were yet to be born. And of those 61 at least 10 we now know have full FAS.

Do you know where the next cases of FAS will be in your community before the mom gets pregnant? Actually you do!

Now what is also interesting about these ladies is that they didn't all wait for us to get the final help they needed. Half of them were into long-term recovery by the time we got to them. Which then gave us the opportunity to do a second study. What's the difference between the half that were able to get clean and sober and the half who were still drinking. Well one of them was their state of change. How ready were they to really change? It basically didn't turn out to be very complicated. The women who managed to get clean and sober on their own were smarter. Their IQs were about 10 points higher but their education was about the same but they were brighter and they had a larger social support network – they had more helpful people in their lives.

Here's the concept! The children with FAS can be used as biomarkers. We can find their mothers! Will this reduce FAS to zero by tomorrow? Definitely not! Do we know how to do that? No! Will we know how to do this better some day? We will! But I'm tired of waiting for that day. We are ready to do something with these ladies now!

These ladies do tons of stuff to themselves, to their families and to their unborn children now! And when we find a woman who has made one of these children, she is an opportunity for direct intervention.

No matter how much money or time you lavish on these moms you are saving your systems infinitely more money and time by not having them make another child with this disorder!

This is marching orders folks! And where can you do this sort of work most effectively? I would suggest to you that is easier to do it in small communities. This does not require high tech intervention - it requires identification! In a small community you can reach out and help them.

How do you do that? It's got to be a 2-step process. The first step is that somebody in the clinic has to make a link to the mother for reasons of confidentiality. Then when the clinic makes a diagnosis of FAS or a related condition the clinic has a secret and this is a very weird thing in medicine. They now know that there is somebody in the community with a serious disease who is at very high risk of having a horrible life, having brain damage, at risk of dying and all sorts of other stuff and I just can't go and tell her that because of rules of confidentiality.

Pretty interesting. So what we do is we have a link and the link is that a social worker from our program contacts that mother and in a confidential interview or set of interviews assesses where she is and where is her state of change, if she is already into long term alcohol treatment or not. If she isn't what kinds of steps would she need to get there. It may be all she needs is a phone call. Or on the other hand she may encounter that this mom has FAS herself, has got multiple mental health problems herself, has very limited skills, and really needs a best friend.

There are "new best friend" programs and the concept is that a person would work with an individual for three years on up to a daily basis and help these women slowly move in all the directions they need to move initially to affect change. What is really interesting about the program is that birth control and alcohol treatment are never priorities for these women and no one makes them priorities. When you work with them virtually all women will pick that up eventually. Once you work with people with better interventions, they will handle their own change.

The fact that this program and this notion is spreading and this approach to healthy people is spreading is the most hopeful thing I can tell you today.

They told me that I didn't need to tell you the definition of FAS that you all knew it. Nevertheless I think we should talk about parts of the definition of FAS. Now you know that FAS is defined as growth deficiency, a specific set of facial features, brain damage in the context of alcohol use in pregnancy you also know that the definitions of each of these things are not well codified in medicine that different people have different opinions about each one and what each one means and that leads us to trouble as you go from system to system and I think you know that our program in Washington has tried to codify each of these pieces so that people may disagree about the final diagnosis but they shouldn't disagree about what they've found.

Well what we've found by using this codified definition is two things. One is the face of FAS and its uses and the other is the brain. Lets just talk quickly about the face. Is there something about all these FAS faces that look the same? Absolutely. But what is that? It actually took a lot of time to sort out what it was that made all these faces look alike.

Basically what our program did was ask the computer to do the psychology of the dysmorphologist. In other words we said that these photos all have the face of FAS according to our experts but they can't tell us what it is they saw but they all agreed that's the face. And that was true, the experts did not and still do not agree in words as to what it is that's in the picture.

So we asked the computer to tell us what it was about the faces that was common and what the computer found was the following. It really wasn't very different from an article in 1976 which was basically that the head was a bit smaller, the eyes were quite small, the philtrum was flat and the lip was thin and those were the key features. If you had those features it didn't matter what else was wrong with your face it didn't look like you had FAS.

Well then you have to know how to measure those things. It is very difficult to measure the size of a palpebral fissure especially if people aren't looking at you. You are holding a ruler in front of somebody's face and you have to do that with an accuracy of one millimetre.

If you are off by one millimetre, you could be off by a standard deviation. If people have epicanthal folds or any other soft tissue around their eyes, you have to pull that away so that you can accurately measure this without destroying the palpebral fissure and you have to do that in a flying three year old.

It's actually doable. One of the tricks is to get the child to simply settle down and to look up and when they look up, you get their eye away from the ruler but more importantly it clears the palpebral fissure and you can get an accurate measurement. I should also tell you that we have had many professionals come to our clinic for training and we make them all measure palpebral fissures and they are often off by two or three millimetres. So people who do this have to really be trained not only how to do the technique but they have to learn how to sight a line. This turns out to not be a simple matter.

How do you describe flatness and thinness? Well you need a ruler for that too. And so we developed our famous lipometer. You hold it up to someone and compare their lip and philtrum and this is a standard approach. It is actually much easier than measuring the palpebral fissure.

You can do this from pictures but you have to be careful because the philtrum can change when the child smiles. This is just soft tissue after all. So this has to be done in repose.

Why does the face reflect the brain? How does this face tell us that the brain is not going to be normal? It does predict the brain. It does not predict how sever the brain damage is though. You can have mild or severe brain damage with this face. I have never seen anybody with this whole face who doesn't have some brain damage.

In fact in studies as the face is more FAS like, the brain is more likely to be abnormal. The only face that you would want to counsel people or predict the future about is the full FAS face. But the risk of brain damage increases as the eyes get smaller, as the philtrum gets flatter and the lip gets thinner. The risk goes up but not the diagnosis.

At one-month gestation, the top end of your body is a brain and at the very front end of that early brain there is tissue that has been brain tissue. It stops being brain and gets ready to be your face. Follow this anterior forebrain/tissue, isn't that interesting? Your eyeball is also brain tissue. It's an extension of the second part of the brain. It started as brain and "popped out".

So if you are going to look at parts of the brain from alcohol damage or any kind of damage during pregnancy, eye malformations and midline facial malformations are going to be very actively related to the brain across syndromes, and they are, and they certainly are with FAS. That's why these two things are predicting so helpfully.


People have misunderstood the next word which we are responsible for spinning out. In our monkey model in the trial, the only time you had that kind of anomaly was with exposure to alcohol on the 18th day of pregnancy which in humans would have been the 20th day. On the 20th day you don't even have a brain nevertheless that's what we found.

In the mouse model you only get this facial anomaly in the mouse with exposure at that same time period. So there is something that happens very specifically that affects these cells. Well if you don't have the lip and philtrum anomaly you will not get a diagnosis of FAS.

Therefore if it's true that in humans this only occurs on the 18th day, if your mother doesn't drink during the 18th day of pregnancy then you lose your chance of getting a diagnosis of FAS. Does that explain why so many more kids with alcohol related brain damage are out there than have FAS? Yes! And that's what makes it really confusing that the people with the face always have brain damage but the people without the face MAY have brain damage.

So that face is leading us to brain and it's the brain that I want to speak about at the end because this is where the rubber hits the ground because what FAS is all about is brain damage. In the Id going back to Goethe, we are a helping society. We do reach out to children with brain damage.

You all come from systems which are dedicated to helping children with special needs. Why is it so hard to help this group? What is the missing piece? If we understand the missing piece we ought to be able to help them better. And it seems to me that there are two parts to that and I will very quickly go over each part.

Part 1 is understanding what's really wrong. Our understanding of what's really wrong began when this child was born in 1974. This was the first little baby that had FAS and was diagnosed and died and the brain came to me as a Fellow in neuropathology and neuroembryology for autopsy. We have never seen another brain like this related to alcohol. It's really not the one that should be on all posters. It does not represent the typical case but it did teach us a critical lesson in what alcohol did to the brain, and those lessons have been true for 25 years.

Everything that we wrote in that first paper and predicted would be true has been true. What does alcohol do to the brain? Anything it wants! What systems does it disrupt? All of them!

So here is a normal brain at the back end of a big band that connects the pieces of the brain called the Corpus Callosum. These are the normal holes called ventricles. Here's our child with FAS. People have used this slide in lots of lectures to describe focal lesions. There is no Corpus Callosum, there's no band in the middle. The ventricles are too big the child has hydrocephalus. The hippocampus is abnormal.

The big important message is that alcohol does not affect a small piece of the brain it effects everything. That seems so obvious yet it is so not obvious to scientists that they have to think about this as a global brain injury and not a focal brain injury. Alcohol hurts the whole brain.

This is an embryonic section of the human brain. The neurons are down here, they go back and forth, they divide and at some point they decide to migrate up towards the surface of the brain. So these bands here are neurons that are migrating to their final positions. They get there because there are connective cells in the middle that allows them to get where they are going.

Alcohol interferes with every part of it. It kills neurons - there are fewer of them. It disrupts their migration, it disrupts the structuring, it changes the wiring. Study after study has shown that alcohol can do all those things from mild to severe in structure.

Now a typical severe case of FAS would look more like this if somebody died. What's interesting and fortunate about FAS is that very few kids have died, so few autopsies have been done. This is not a lethal condition so we don't have a lot of tissues to look at but we have done is gone to imaging to help us.

This is an image of a child with FAS and in this case is diagnostic of brain injury. Does it tell us what is wrong with this child? No. Looking at this injured lesion we would not be able to tell you what kind of social or academic problems this kid would have.

So is it important to get this kind of an image? It seems to be. Not because it helps us with intervention but because when people see images like this, they believe somebody has brain damage. Brain damage – permanent disability. Because that's what FAS is. Birth is simple but fortunately only about 50% of kids have brain damage that can be seen at this level of magnification.

In our population in Seattle where we make the diagnosis of FAS based on many kinds of evidences of brain damage, microcephaly or seizures are seen in less than 25% of patients. So while this is very powerful in helping people understand that somebody's got brain damage, it's a rare event.

These are studies that you can't do in people, these are studies that were done in monkeys where you could remove brain tissue and actually study it. In monkeys who are apparently retarded who had normal monkey brain size, normal structure and normal CAT scans, when those animals were sacrificed in the end, if we looked in their brains they had very abnormal neurochemicals.

In the level of lesion it was at the level of receptor sites and neurochemistry and again there have only been a few monkeys that we have sacrificed but there have been tens of thousands of rats which have died at this point and alcohol definitely causes this problem. This is the level at which those children with FAS are damaged.

That's the problem with the first slide of the damaged brain because of what people are seeing in their clinics and are seeing in the school is not that kid. Human child does not look so neurologically impaired and there is no medical model for finding that damage. It's a neurochemical test its beyond our reach but it still effects the brain. How are we going to help people understand that these people have a disability?

Well the first thing that people tried was this – look at all the animal models for behaviour - alcohol is a behavioural teratogen. If the animals can have all these behaviours it makes sense that the people can have all those behaviours and that is related to the brain and that's brain damage. But we can't really make that link that simple can we? You are all more sophisticated than that.

Every behaviour in an individual cannot be linked to alcohol exposure, they are not all brain damaged so we have got animal modelling to say that all of these types of subtle neurochemical problems can lead to behavioural maladies and that could be like analgous of people but we need an intermediate step.

The next problem before we can get to the final solution is that not only has alcohol caused varying problems in our kids but the kids that we see in our clinic have questionable genetic backgrounds, dad had ADHD, mom dropped out of school. They have this legacy and there are all sorts of suggestions that they just weren't that bright. As I told you they used other drugs during pregnancy. After birth they are put into a situation which is high in abuse and neglect. They are taken away from their parents, put into foster care and they are still in an environment of abuse and neglect.

Seventy five percent of kids we see in our clinic have had seen physical abuse. We are not seeing Fetal Alcohol Syndrome folks we are seeing Fetal Torture Syndrome. I don't know that we can do the experiment any better. It damages children's brains.

Here's another problem that we see all the time and this is the one again that really emphasis why we shouldn't be. The mother says "I tell my son 'don't run in the street or you will be hit by a car', and he repeats it back to me, and this dance goes on and on and on – he's got it. I open the door and he runs in the street."

So why does he do this? There isn't one reason and you can't leap from FAS to solution but you can go from FAS to needs evaluation. This child could have a concrete language problem. What was the rule? "Don't run IN the street". What did the child do? What did the child do? He ran ACROSS the street. In his concrete way of thinking, running in the street means running down the road. He'd learned a rule, he had misunderstood what his mother had meant but he applied the rule. The second is that he has a problem with memory and judgement. He can repeat the rule all day but he can't know when to use it.

The third problem – this guy could have attention deficit. Fourth problem – he may be oppositional. Fifth problem – he may be depressed. He thinks it's a good idea to run in the street and get hit by a car.

Now once we get this far we know what to do – we have interventions that would work if we matched the right kid to the right intervention. If you start with FAS as a treatment diagnosis you don't know where you are going.

So this is the thought for tomorrow. We have to use the FAS diagnosis as a biomarker for the mother, we also have to use it as the STARTING POINT for the child. It is not the diagnostic label that's important. The diagnostic label that's important to the child is this sub diagnosis of brain damage and understanding what that diagnosis means for him. There is no substitute for a diagnosis. Making this diagnosis defines a patient as disabled rather than disobedient and that's a HUGE intervention and it helps the mothers and others have appropriate expectations for success.

You want hope? You have to carefully define hope. And it will help these people qualify for services.

But it's also important to limit the diagnosis of brain damage because not all of these abnormal behaviours are due to abnormal brain structures. Someone who is depressed or oppositional may have a perfectly normal brain thank you very much and are perfectly resistant to all the horrible things that happen in their life and we should have normal expectations for their performance and use normal types of treatments for them.

In all fairness they shouldn't qualify for special services, we don't have enough money for everybody.

In order to work up the brains we have to work up all these kinds of things. You cant just do an IQ test, you can't just do language, you can't just do sensory integration you have a whole brain process, you have to do a whole brain work up. These things interfere or interact with each other and this is when maladaptation occurs within this population.

Minimal Brain Damage was a term that was coined in the 1940's for kids who had problems across all of these domains. Pretty interesting?

What happened to the term "Minimal Brain Damage"? There was no agreement among physicians about how to make a diagnosis. Some people said you needed to do a work up and other people said they could do it in ten minutes talking to the mother and everybody said it was too expensive, and the problem was that in ten years no one knew what it was because everyone made the diagnosis differently. Sound familiar?

Also what was wrong with Minimal Brain Damage was that it was a negative diagnosis. It was a diagnosis of what you DIDN'T have. You didn't fit into treatment plan. It was taking everybody who had different problems that didn't fit and saying that was the category. Nobody knew what to do with that. So what did we do with it? By the 1960's and 70's we divided it up. We sent the attention deficit and neurologic problems to doctors, if we found these people had emotional problems we sent them to mental health. But you chip away at all the coordination and understanding that these parts influence each other – that's what was lost and that's what's never been replaced.

The diagnosis doesn't help us if it's a negative diagnosis. We have to learn from this experience that dividing everything up into its little bits doesn't obviously lead to a type of treatment that was needed with this population. The hopeful thing that we can start doing is to being total coordination and understanding back.

FAS Community Resource Center