Couple gives a lifetime to create change

RED SHOES ROCK IS HONORED TO PRESENT
STERLING AND SANDRA CLARREN. THANK YOU

Sterling and Sandra Clarren have given a lifetime together in making a difference for understanding and helping persons with FASD. They are a team!

Dr. Sterling K. Clarren is one of the world’s leading researchers into Fetal Alcohol Spectrum Disorder. Dr. Sandra G. Bernstein Clarren worked in the field of special education for over 40 years. Together they had what it takes to help make a difference for individuals with FASD and their families and the professionals who work with them.

Dr. Clarren has studied FASD since 1975 and helped to establish the original fetal alcohol definitions. He was one of the very first clinicians to recognize that alcohol exposure during pregnancy caused neurological damage. Within nine years of the Washington discovery, animal studies, including non-human monkey studies carried out at the University of Washington Primate Center by Dr. Sterling Clarren, had confirmed that alcohol was a teratogen. By 1978, 245 cases of Fetal Syndrome had been reported by medical researchers, and the syndrome began to be described as the most frequent known cause of intellectual disabilities (then referred to as mental retardation).

Sterling was instrumental in developing the field of FASD from its infancy. He has been a world leader in research on this issue. He has dedicated his life to understanding the complexities of FASD and advancing the science, using that evidence to improve diagnosis, develop interventions, increase awareness and change outcomes for those living with this disability. 

Today we meet Sterling K. Clarren, the man who was willing to ask the questions to discover new answers. 

One question that may seem simple, was why do women continue to drink while they are pregnant?

Almost twenty years ago Sterling Clarren decided to investigate this. And what he found was startling. About half of the 80 mothers his team looked at had FASD themselves. In addition, many of them had suffered extremely high rates of physical and sexual abuse. They often had mental illnesses and were isolated from friends and families.

“The stories these women told the interviewers were so awful that the interviewers needed psychiatric support at the end of the study for secondary post-traumatic stress,” said Clarren, he champions mentorships for mothers programs. 

FASD AND BRAIN FUNCTION

Dr. Clarren shares in his Keynote from Yukon 2002 Prairie Northern Conference on Fetal Alcohol Syndrome

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.

He has written broadly on the topic of fetal alcohol.

He wrote the first article on the neuropathology of FAS, and developed the first non-human primate model for studying dose-response. 

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. 

SETTING THE STAGE FOR CHANGE

The full keynote is worth a quality read. and remember it was spoken out in 2002!

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?

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. 

He has testified about FASD before the US Congress and Washington State Legislature. 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.

They say a great woman makes the man…. well that may or may not be true but it is true that Sterling’s life partner is an incredible woman and he is definitely blessed.

Dr. Sandra G. Bernstein Clarren worked in the field of special education for over 40 years. Initially she has worked as a special education resource teacher and diagnostician in the United States and England. After receiving her doctorate from the University of Washington, she worked as a school psychologist in hospital and school settings and at the Fetal Alcohol Syndrome Diagnostic and Prevention Network at the University of Washington.

Sandra G. Bernstein Clarren is the principal writer for the Alberta, Canada, Teaching Students with Fetal Alcohol Spectrum Disorders. This is a significant work for all educators to read and is offered as a free download. 

Excerpt from page 12, Teaching Students with Fetal Alcohol Spectrum Disorders

Children with FASD have difficulty processing information. If you give them a list of things to do and walk away from them, only one of the items may get done based their short term memory. Not only is processing all of it difficult but they cannot remember everything you told them to do. Some children work best of you have pictures showing the order to do things in on the wall. For example, a picture of someone getting dressed when getting up, then brushing their hair, eating breakfast, then brushing their teeth can help. They often have trouble with time schedules, such as only having a certain amount of time to do something. Planning and organization is also a problem children sometimes have difficulty with. A child with FASD who tries to clean and organize their bedroom might clean one side by putting everything on the other side, and when they get to the other side of the room they just put everything back over to the other side of the room. It is a never ending circle sometimes and then they just get frustrated and never finish what they start.  Children with FASD also have poor judgment skills. Most children would know that something is not right or okay to do, but a child with FASD may not see a problem with doing what they are doing. They may also have speech and language delays; for example, they may not fully understand what someone is telling them or they may not be able to get their point across regarding what they need and want. They also have a lower IQ than the average child, but some of the children with FASD do score in the higher range (Sandra G. Bernstein Clarren 2004 pg. 12)

She is a trainer, researcher, presenter, writer and diagnostician in the field of FASD and an educational psychologist in private practice.

Sandra acknowledges individuals with FASD, their families and her colleagues who have been her teachers in learning about the strengths and needs of this special group of children. She also thanks her husband, Sterling Clarren, MD, for reviewing sections of the text related to medical and research issues and discussing many issues related to individuals with her in the development of this project. 

Writing that has changed history

Sterling Clarren Papers

• Clarke, MP, Tough SC, Hicks M, Cook J, Foulkes E, Clarren SK. (2005). “Attitudes and approaches of Canadian providers to preconception counseling and the prevention of fetal alcohol spectrum disorders.” Journal of FAS International.
• Clarke, MP, Tough SC, Hicks M, Cook J, Foulkes E, Clarren SK. (2005). “Approaches of Canadian providers the diagnosis of fetal alcohol spectrum disorders.” Journal of FAS International.
• Astley, SJ, Stachowiak J, Clarren SK, Clausen C. (2002). “Application of the fetal alcohol syndrome facial photographic screening tool in a foster care population.” J. Pediatrics, 141:712-17.
• Clarren, SK, Randels SP, Sanderson M, Fineman RM. (2001). “Screening for Fetal Alcohol Syndrome in primary schools — a feasibility study.” Teratology, 63:3-10.
• Miller, RI, Clarren SK. (2000). “Long term developmental outcomes in patients with deformational plagiocephaly.” Pediatrics, 105:417(e26).

Sterling Clarren Papers books and chapters

• Clarren, SK. (2004) “Alcohol teratogenesis and fetal alcohol syndrome.” In L. Osborn, T. DeWitt, L. First. (eds.). Comprehensive Pediatrics. St. Louis : Harcourt Press, in press.
• Clarren SK. (2003) “Fetal alcohol syndrome & fetal alcohol spectrum disorders.” In: M.L. Wolrich. (ed.). Disorders of Development & Learning. Hamilton, Ontario : BC Decker.
• Clarren SK, Astley SJ. (2001) “Fetal Alcohol Syndrome”. In: S.B. Cassidy and J. Allanson J. (eds.). Clinical Management of Common Genetic Syndromes. New York : Wiley and Sons.
• Clarren, SK. (2000) “Attention deficit hyperactivity disorder in the context of alcohol exposure in utero”. In: P. Accardo, T.A. Blondis, B. Whitman, M.A. Stein. (eds.). Attention Deficits and Hyperactivity in Children and Adults, 2nd Edition. New York : Marcel Dekker, Inc.
• Astley SJ, Clarren SK. (1999) Diagnostic Guide for Fetal Alcohol Syndrome and Related Conditions: The 4-Digit Diagnostic Code. 2nd Edition University of Washington Press, Seattle, Washington.
• Astley, S.J., Bailey, D., Talbot, T., & Clarren, S.K. (1998). Primary prevention of FAS:Targeting women at high risk through the FAS Diagnostic and Prevention Net-work. Alcoholism: Clinical and Experimental Research, 22, 104A.
• Clarren, S.K., & Astley, S.J. (1998). Identification of children with fetal alcohol syndrome and opportunity for referral of their mothers for primary prevention. Morbidity Mortality Weekly Report, 47, 861-864.
• Astley, S.J. & Clarren, S.K. (1997). Diagnostic guide for fetal alcohol syndrome and related conditions. Seattle: University of Washington Press.
• Clarren SGB, Shurtleff H, Unis A, Astley SJ, Clarren SK. (1994) Comprehensive educational, psychologic, and psychiatric profiles of children with fetal alcohol syndrome. Alcoholism: Clinical and Experimental Research;18(2):502.
• Streissguth AP, Aase JM, Clarren SK, Randels SP, LaDue RA, Smith DF. (1991) Fetal Alcohol Syndrome in adolescents and adults. JAMA-Journal of the American Medical Association; 265(15):1961-1967.
• Clarren SK, Smith DW. (1978) The fetal alcohol syndrome. New England Journal of Medicine 1978;298(19):1063-1067.

Sandra G. Bernstein Clarren

• Clarren SGB, Shurtleff H, Unis A, Astley SJ, Clarren SK. (1994) Comprehensive educational, psychologic, and psychiatric profiles of children with fetal alcohol syndrome. Alcoholism: Clinical and Experimental Research;18(2):502.