Dr Sandra Clarren's Address at 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".
Dr Clarren's Biography
Dr Sandra Clarren is the staff educational psychologist at the University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network. She has worked in the field of Fetal Alcohol Syndrome since 1990 doing research, workshops, diagnostic assessments and counselling.
Dr Clarren received her BA from Smith College, her Masters Degree from the University of Minnesota and her Doctorate from the University of Washington. She interned in Neuropsychology at Children's Hospital and Regional Medical Centre and wrote her dissertation on the subject of Child Neuropsychology.
Dr Clarren is working in the field of education since 1970, for ten years she worked in private and public schools focussing on the instruction of gifted and learning disabled students and the behavioural problems of learning disabled students.
Since 1982 she has worked as a school psychologist for children and adults in private and public schools and pediatric hospital settings. In addition to her work at FAS DPN, Dr Clarren also maintains a private practice primarily conducting psycho-educational assessments.
She also teaches for the department of Behavioural Sciences at the University of Washington. She is currently teaching in the public school system in the Seattle area.
Dr Clarren's Address
What do we need as educators first of all we need information and knowledge. And then we need empathy for the children that we are working with and their parents and also for ourselves as we work really hard each day and work together as a team. And then we need strategies so we can work with these children on a daily basis.
This population is a very complex group. A colleague of mine worked with disabled children. She had worked with autistic children and other groups of disabilities, and then she got to the FAS children and she said she has never had a harder group because of the complexity of the issues.
So you are all working with one of the more difficult populations. Now you really need to understand some basic stuff about FAS and I understand also that you are very interested in the diagnostic process. I will tell you all about the diagnostic process and some of the neurologic parameters and how we do diagnostics.
Historically alcohol has been with us for a long time. People have been aware at various times in history that alcohol has a negative effect on the fetus.
This lithograph is of "Gin Alley" and was drawn during the "Gin Epidemic". Unfortunately it is not a great slide but this woman is obviously not caring very well for her child and if you could see the face of that child clearly, you would see that it has all the features of FAS.
So way back then they recognised that there was something going on. But it was in the early 70's that it was realised that when mothers drink during pregnancy, their children will have specific toxic effects.
We now know that there are two patients that is, the mother and the child and they are a dyad and we have to treat them together.
What are the principal features of FAS?
Central nervous dysfunction which is what you deal with every day and is the key one
Facial malformations, and
There is also a continuum effect so those three features have to be available to really have a full diagnosis of FAS. We now know that there is no safe level of alcohol to take during pregnancy, but we do know that there is a continuum and certainly at 4-6 drinks per day, FAS can occur.
Then again women can drink heavily and now have a child with full-blown FAS and people can drink just a little bit and have a child with FAS.
It is an issue of the interaction between the genetics of the mother and the food she is eating and all kinds of other characteristics such as when the alcohol is taken. All of these things will influence what kind of disabilities the child will have. It is also important as to what part of the fetus is developing at that particular time.
Also we have seen that it is not just alcohol that children have been exposed to there are ranges of things that can influence a pregnancy. Are there other teratogens? What other drugs are the mothers taking? And then there is the environment that occurs afterward. The environment has a major influence.
This slide of fraternal twins shows that one child has FAS and the other is completely healthy. And there is now a whole range of studies being done. The outcomes can be unpredictable when we are looking at alcohol in pregnancy but who would take the risk and take any alcohol during pregnancy?
There can be a range of effects. I am just going to quickly go through the features. This is a classic picture of a little guy who was diagnosed with FAS. He is small and very thin with small lips. If a mum stops drinking in pregnancy then there is much less likelihood of having growth deficiencies. As you can see there is a small head size and that small head size may reflect in a small brain size.
And his facial features do reflect brain damage as we learned this morning. The child has small eye slits, and a flatter philtrum that are critical features. There are many other features and we will see children across different racial backgrounds but these are features which are part of the definition. What is critical to you is the neurological damage and there are different ways of looking at this.
Microcephaly means small brain but there is also macrocephaly which occasionally happens which is a larger brain and then there may be structural deficits. Maybe you've heard people talk about the corpus callosum or a small frontal lobe or something like that almost any part of the brain could be damaged.
Some of the neurological problems that can be seen they can have seizures, they can have abnormal tone which means they can be hypertonic (stiff and rigid) or very floppy hypotonic, neurosensory/auditory loss, but then the key issue is that you can have mental retardation but also there is intellectual "blunting" which means that the intellectual potential of the child is lower than what you would expect based on other people in their family who would not have had exposure to alcohol.
How do we diagnose in Seattle? For example the little girl in this picture has three different stages. At one point she has the classic features of FAS, at other stages of her development it is not very clear. When a child goes through puberty, their jaw grows and their face grows and it is not as clear.
There are the three features but we have this dilemma that they may change over time.
So what do we do? We see children who are great in third grade but when they get to fifth grade where they have to do much more complex reasoning they can't cope and then the behavioural issues are much more evident in adolescence.
We have a dilemma in Seattle about how we are going to help other people diagnose and to teach doctors and other professionals and teams to come up with a system to diagnose.
And we now have three day training in Seattle and I am sure they will start doing them in Canada. We had to figure out how to train people in diagnosis, as it was a reproducible diagnosis. We came up with a diagnostic guide and material to help physicians and teams with standards for growth, standards for diagnostics and all the key features including alcohol use were put on a four point Likert scale with "1" being completely normal and "4" for key features for example where growth is lower than the third percentile.
So if we got a "4,4,4" across the top we would have a feature of growth, we would have a feature face and a feature of brain and there was sufficient alcohol.
However some people say we don't know who the mother is if the child was adopted or the mother says she hasn't had a drink during her pregnancy but they may still have the features so we say this child has FAS features or atypical features but we can still do the diagnosis.
This makes diagnosis a little easier because there are certain guidelines and not everyone can specialise in dysmorphology and have all those years of experience. They key issue for educators would be working on the brain stem. Number 2 would be that there would be abnormalities. This would be based on behaviour patterns, learning disabilities, Attention Deficit Hyperactivity Disorder. The third one is that they have a psychometric program of brain disorders.
We all get together school psychologists, psychologists, people from other specialities also come in and we all do the testing together and we try to figure out what are the issues this child has we put that all together.
This diagnostic process gives people confidence and particularly with a team approach. To do this we have social workers, family advocates, pediatricians, psychologists, psychiatrists and then we have other services we can call in who will work with the larger issue.
We have to think about this individual not just in our clinic but what is going to happen in their world not just at school but in their community as they get older. Obviously there are educational issues and support but then we have to think of judicial issues so we can get more appropriate services.
Lets talk a little bit more because your issues as educators are the neurological issues brain damage and how brain damage gives us a variation in intelligence and behaviour and developmental delays. We see abnormal patterns that I have talked about before. The key issue for all of you in your classroom is how is their behaviour and their social skills playing out as you are trying to do your lessons.
We have a wonderful Occupational Therapist and a range of other disciplines and we have found that they are very helpful on our team. Our OT looks at the motor development and what we have found is that we do a quick neurological screen test that has been very helpful. We give them a visual motor integration test but what we are looking at is, is this kid showing some motor features of neurological impairment? Are they clumsy? Do they have trouble with balance? Do they have trouble with handwriting because their motor skills aren't up to par and that is why they have difficulty?
And this weighs out in terms of their sensory perception. We also give them a sensory evaluation to look at whether they are tactiley defensive, do they grow rigid when someone tries to touch them. Do they put their hands over their ears when they hear loud noises? Do they have trouble tolerating bright lights? Do they get distracted? Our OT does a great job and in their head they know what "normal" development is and they can see that the kids might have neurological damage especially in that early period.
Language has been a key part of our diagnostic scheme and that is the benefit of having a speech and language therapist. Some of these kids have articulation problems but a lot of them don't. Their grammar is OK. Their fluency seems all right and they have pretty good vocabulary but they can't tell me a story. They don't understand what I'm talking about, they tell us something and they don't get it or they forgot it so we went about looking at the issues.
How does the language, expression, and reception reflect the brain issues that are going on? We found that the deficits were really in social communication. How they dealt with their peers, how they listened to their teachers, did they understand instructions, did they understand the information, did they do what you told them to. If you gave them three things to do, by the time they got back to their desk had they forgotten two of them? So we went about creating some measures.
Getting these kids to understand what you want them to do is one of the key issues. We also usually have the benefits of having the kids have some kind of intelligence test and its kind of our data for their level of performance. But we have seen children all the way from very severely retarded to almost a superior range of 120, but that doesn't get away from the problem.
There can be a lowering of IQ as these kids get older so out IQ tests change. But their capacity to do the tasks they are expected to do intellectually as they get older decreases. What we expect of a three year old compared to other three year olds increases and that is where the problem is. So to use an IQ is sort of a guideline for other tests.
One of the areas we found most productive to look at is memory. When we look at a person who has learning disabilities related to alcohol exposure, memory is often an issue. They don't really remember what you wanted them to remember. There is often variation in what we find in terms of whether it is a simple test or a complex test. Many of you will see that the kids will do well on a word-reading test, as their language capacity is OK.
They will be able to read words just fine they are often fluent readers but they are really in trouble about the fourth grade level in some cases with comprehension, particularly inferential questions. Why do we have it? What's going to happen next?
Cause and effect relationships: Those are the areas we really have to concentrate on. It often happens on the playground too in their structured situation. They are able to follow the rules in a small group but put that same child out in the playground where there are complex situations with kids all running around and in that it may all fall apart.
So we have to think about these things when we do our assessments and our investigations - simple vs- complex, and then we use the behavioural anecdote for our information and also look for variations in the modality. Some of our kids are really good at visual or hands-on learning but some have a terrible time with auditory, sequential instruction and don't do well at all.
So those are the kinds of information we are trying to pick up when doing our diagnostics. For psychologists in the audience we found that the Californian Learning Test is a good one only if you have the CD Rom to score.
We have also looked at something called executive functioning. Executive functioning is the executive that is in your head calling the shots helping you to plan, reason, make judgements supposedly related to the last thing that develops and relates to how are we going to get through our day.
How are we going to think things through? It seems to be one of the areas it takes most of the brain to work on in order to do those kinds of things. This is why children with FAS on the whole have the worst trouble. And so again how do they do in a simple test and can we test it?
Only more recently in the last five or six years have been doing isolated planning tests. Actually we ask questions about planning in our interview as part of our diagnostic process and this is performed by a physician and a psychologist who would do it together.
We ask questions like does the child clean up his room? Can he clean his room? What would he do if you left him alone? The mother of a sixteen year old might say, "My house would burn down!" These are the planning and key issues of adulthood where they have to think flexibly and this is what our patients have lots of problems with.
Often we will hear educators say "We don't know what to do, these kids don't understand consequences, they can't seem to learn from experience?" Then we look at behavioural functioning and adaptive functioning and this is where it all comes together.
Can the child do their hygiene? Can they help around the house? Can they communicate? Can they talk and play games? How do they do at social events?
Again the big picture is this is where out kids really fall down. They really have a tremendous amount of difficulty adapting. This is what is often called behavioural regulation.
The people we have seen we've done some pilot studies looking at psychometric profile and one of the key issues looks at a group of boys that were school age and we looked at their language vs- their IQ vs- their behaviour.
Their language is significantly higher than their IQ and their adaptive abilities were significantly lower than both of them and even though the IQ range was the borderline range their adaptive skills were the bottom two percent.
And there was a very small range. None of those averages had adequate adaptive ability. We have seen that pattern in both adults and children.
Discussion on diagnostic process the difficulty of measuring palpebral fissures and philtrum Dr Sterling Clarren and Dr Sandra Clarren.
Diagnosis is a critical first step but also critical to have an accurate diagnosis particularly the level of neurological impairment. The diagnosis is critical because it leads to the mother and it is the mother who leads to prevention. So there are two things that are going on in the Clinic. The Clinic provides the social worker to go and find the mother and provides as support network around that mum so that they can become productive members of our community.
The diagnosis is absolutely critical but so too is the after care and support and the diagnosis points the way to the most appropriate support.
Question about father's implication in FAS Dr Sterling Clarren
If the dad drinks it would have an effect on the sperm initially and it probably wouldn't be a viable pregnancy. You may see this pattern where the dad drinks (pattern of FAS in kids) but it is not because the dad drinks. There could be a range of reasons why this is seen, but alcohol is one thing we can do something about.
Dr Sandra Clarren
We know that many of these children have reading, maths issues and learning disabilities those programs work a little bit but don't fit completely. Mental retardation we know many of our children diagnosed with FAS do not have mental retardation so that doesn't work completely. Severe behaviour disorders? Occasionally that works but it certainly doesn't pick up the learning disabilities. ADHD? Yes some of our kids are diagnosed with ADHD but that isn't sufficient and the other programs for OCD, conduct disorders, schizophrenia and other issues won't work so we have to look further.
Where are we going to look for a road map? We can look to several situations. We don't have at this point any research and intervention that's purely new kind of research but we can look to other research factors, we can look to clinical observations and then we can look at the collective wisdom, the wisdom that's brought together at a conference like this.
So where have we seen in the recent studies that have been done on the brain development issues that we talked about yesterday, and the issues that exist for children and adults with FAS.
We are finding difficulties with sensory motor integration, behavioural emotional regulation, motor control, executive functioning, learning, social and adaptive skills the problems are everywhere. Also the strengths are everywhere too and we can't document those. We can do those through step-by-step assessments with individual children and adults and put that all together.
One early attempt to put some of this together was at the University of Washington and there are many people in this audience who have wonderful research findings to bring on this issue. I am going to be a little parochial and just talk about the research from the University of Washington but there are many others.
Looking at this graph we can see that there are problems with adaptive skills, those are skills of daily living, social skills, communication skills, the skills that you need to get along in the world. Kids talk well but they don't understand things well, their cognitive skills are low but their adaptive skills are way down.
This is what we are here about. If they all had mental retardation we could go to conferences on Down Syndrome and that would be just fine, or if they all had learning disabilities we go to the conferences on learning disabilities and we would be getting a lot of good information.
Ann Streissguth has pulled together a lot of work on children who were conceived and grow up in the Washington area and particularly looked at people over the age of 21. Looking at all that we have issues of primary disabilities, these are the ones we have talked about before that are basic to the central nervous system disorders and this is what she got and has documented and she has pulled this together and her studies on secondary disabilities were well researched but basically they are on attention, executive functioning, behavioural stimuli, memory, social type issues, social communication. But then when she looked at the secondary disabilities these are problems that people have when they do not have a diagnosis or an understanding of what FAS means, they don't have a proper program.
Now if you live in a situation where you are misunderstood and punished for problems you have and when you can't cope with the world, you would get into trouble and you would get up to a lot of other kinds of issues such as disrupted school experience, trouble with the law etc. Once they get older they can become part of the person and here upwards of 60% - 70% of people in prison are suspected of having FAS. Mental health problems, alcohol and drug use - up to 70% and better have a chance of using substances, homelessness, having children themselves with FAS and then they can't cope with their children. So these are some of the secondary disabilities.
But Dr Streissguth and her team have found that there are universal
protective factors that can ameliorate those secondary disabilities and these
Stable and nurturing home
Diagnosis before six years of age
We are not certain that this has to be completely the case but the issue is
that when you get into school, if people understand why you are acting this way
and understand that you have a disability, then modifications can be made and in
this respect is very important.
Never experiencing violence or abuse
Staying in the same household for at least three years
Good quality home for those years
Eligible for Developmental Disabilities Services eg funding
Having FAS rather than FAE (because the kids with FAS are more identifiable)
Having their basic needs met for 30% of their life (this reflects on the horrible conditions that this population lives under, but these kinds of things are essential)
They are essential for the rest of the population but particularly critical for this group.
Our team have put together what we think are the positive factors in life span planning and I would tend to say that what we are looking for is a road map of how we can help these people get through their lives in the most positive way possible.
Support is essential and careful observation of individuals we really have to look at what is going on not just having the label but understanding what the issues are and where is the person getting into trouble.
My colleague and friend Carolyn Parker, has done some wonderful work and observation and we really need to open our eyes and look at our children comprehensive diagnosis we have found is really critical and treatment planning not just from one point of view but from all points of view.
It has to be multidisciplinary and then once you have got the plan, that's not sufficient. You need to fine tune the plan which you do at the points of transition in the situation when you go from pre-school to secondary or elementary school and then through.
One of the pieces of clinical research that is going on right now is what's helpful about getting a diagnosis and we use in Seattle and Alberta now and British Columbia and other parts of Canada and eight states in the US have adopted this model using a multi disciplinary team, this is the group that's in there. I'll teach new theories from group to group but the key is the family, trying to work with the family so we use the four digit diagnostic code.
We have found that this is a particularly good way to be consistent with a diagnosis and there is some standardisation. So people when they come to a clinic know they will get a diagnosis that will be recognised in other places and also do some good.
The team decided that we appreciated that one of the things was the treatment plan that was the key to finding the road map so we could look at the complexity of the areas where we needed to do treatment planning.
When we do our diagnosis, we always look at what are the health issues, the psychosocial issues, the family caring issues, educational / vocational and this can be done at all age levels and we can list the problems and then what the interventions are. Now if you can get medical people on your team it isn't that difficult to figure those out.
An advocacy model was developed by Dr Dempster and it has been used and looks at a variety of programs to provide advocacy initially for birth mothers but any time we do a diagnosis with a family we are teaching them to be knowledgeable advocates for their children.
What is an advocate? It is an active intermediary between the person with FAS and the environment. An advocate is a key for many who have secondary disabilities because this is the person who helps other people understand and also the advocate helps interpret the alcohol affected individual to the world and also helps the child to understand the world.
The following is a letter from a girl who has FAS and is describing how she feels:
"When I found out that I had symptoms of FAS, I was confused and angry. I thought that I was different from everyone else, that I would be known for what I am. Since then I have learned that the symptoms of FAS vary from individual to individual, depending at what stage of pregnancy the mum drank and the amount of alcohol she consumed.
My symptoms are very small compared to some of the other symptoms I have heard of. Some people find it impossible to believe I have FAS and when I explain that I don't show the physical signs of FAS.
Following instructions sometimes confuses me. When I'm asked to do something like "take out the garbage" I won't understand the words and they get all mixed up in my mind. For example, my stepfather gives me a command to do something and it's like I don't hear it clearly even if he is in the same room. It's like I block out the words and phrases. Visual context is a very important way of learning for me. When a teacher shows a topic I can understand it. I am not able to focus on reality when disaster strikes. When I worry I make myself sick. This letter is to help me guide myself and others."
She presented this letter in high school as a way of advocating for herself.
So what are the causative effects of all these things in terms of planning? These people are in need of consistency and support. People really carefully looked at these children and they all had a comprehensive diagnosis. It hasn't been a smooth road for any of these people but I would say when you have advocacy, both from family and themselves, we have heard great success stories.
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