Friday, September 14, 2012

Realistic Outcomes.- Fetal Alcohol Spectrum Disorders




September ninth was international Fetal Alcohol Spectrum Disorders (FASD) Awareness Day.  We have been using this as an international day of awareness since 1999.  The first year we focused on ringing bells to commemorate the day.  We tried to get the local news media to feature news articles on the disability.  Over the years, we have had a number of activities to draw attention to the disability.   One year Christine Gregoire the governor of Washington State filmed a public service announcement on the dangers of drinking while pregnant.

The media has changed over the past thirteen years.  This year many participants chose to post to Facebook or Twitter.  I posted to both places and started to read through the posts from other advocates as horror swept over me.  The messages focused on the lifelong nature of the disability saying, “People with Fetal Alcohol Spectrum Disorders may need lifelong supports in order to work and maintain relationships.”  I had to wonder, “What are these people thinking?”  No. NO. NO! That is not the norm for individuals with Fetal Alcohol Spectrum Disorders.

Perhaps I have been in the field longer than most of the other advocates.  Perhaps they have not read the long-term studies.  Perhaps they are living in fantasyland.  People with Fetal Alcohol Spectrum Disorders do not have the rosy outcomes the above statement indicates.  I suspect that many advocates hope for the best for the people they love.  Certainly, I know some individuals with FASD who are able to hold down a job and maintain relationships, sort of.  Dr. Ann Streisguth’s long-term studies indicated that some people with the disorder might be able to hold down a job, or maintain family relationships.  She did not find people in her caseload who were doing both.  It is theoretically possible.

The far more common outcome for people with FASD is not so successful.  Most of the young people I met twenty years ago are bumping along with a great deal of support.  Some are in assisted living, which works, sort of.  Some have a great deal of difficulty with drugs and alcohol.  Some are still in prison.  Some live in the community with constant support from aging parents and the government.  Most receive Social Security Disability payments.  Some receive Section 8 housing.  Most receive food stamps.  The government financial support is in addition to being in constant contact with a caregiver who serves as an external brain.

What is it about this disability that causes it to be so devastating?  The answer to that question lies in the nature of the brain damage caused by prenatal exposure to alcohol.  Humans have a small structure in their brains, the corpus callosum, that serves as the main right to left pathway for brain activity.  It connects facts with meaning.  Together with parts of the brain stem, it allows us to learn from cause and effect.  Both of these structures are vulnerable to prenatal exposure to alcohol.  Dr. Ed Riley at the Univ. of California at San Diego was the first to find the characteristic brain damage associated with prenatal exposure to alcohol.  Dr. Streisguth replicated his study.

This characteristic pattern of brain damage produces some predictable behavior problems.  Individuals with FASD cannot learn from their mistakes.  They cannot connect rules to behavior.  They just never develop adult level judgment and reasoning.  Most individuals with FASD possess the sense for safety of a three year-old.  Of course they have adult bodies and people expect them to learn adult responsibility, which is just not going to happen.  With our foster daughter the three-year-old judgment is a life threatening disability.  She absolutely cannot keep herself save around the general public.  She projects vulnerability.  Yes, she has the intellectual capability of working.  She is tired of being sexually exploited because she cannot repel predatory men.  She stays home and lives on the pitiful income the government provides.

There is another aspect of this disability that is very very difficult for people to grasp.  Perhaps some day I will find the magic words to express this better.  Most of the people diagnosed with FASD live life on the margins, receiving public assistance if they are lucky.  Many get free housing and food in prison.  The state pays and pays and pays through the criminal justice and welfare systems for this disability.  The individuals who have the disability pay and pay through heartbreak, abuse, poverty, loneliness and failure for their entire lives.  The industry that produced the product that causes the damage makes wonderful profits.  The liquor industry fought warning labels on their products.  They fight taxes to cover the cost of the damage their product causes.  They reap huge profits without consequences.  Perhaps those with FASD are right actions do not produce consequences—at least not for the liquor industry.  They did for the tobacco industry.  They did for the paint industry.  They do for anybody else who makes a product that causes damage when used in a legal and socially accepted manner.  After many years as an advocate in this field, I am tired of the heartbreak from watching the devastation caused by prenatal exposure to alcohol.  I am sick of the lack of appropriate response from our government and justice communities.

35 comments:

  1. Thank you for writing this powerful essay. I have a friend who adopted a child with FASD (unbeknownst to her) and raising him has been a struggle. Everything you wrote rings true to her experience. Thank you for being an advocate for FASD victims.

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    1. You bring up a common point with FASD--adoptions. Adoptive parents seldom know they are getting a child with a lifelong disability. One reason for this is that the disability is not necessarily apparent at birth or even before a child starts school. It becomes more apparent and devastating with age. - Delinda

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  2. So, Delinda, you're saying that as parents, advocates, professionals, and family members of people with FASD we should just shrug our shoulders and say that NOTHING WORKS?
    First, I don't believe that. I think that with education, understanding, and support - education that's hard to find, understanding that has to be forced, and support that isn't there, I totally understand - there are possible positive outcomes for people with FASD. No, I haven't been doing this long. My son is only 10. Who knows what his future might hold? I know it will be hard. I know he might live with us his whole life. And I know it will be a battle a lot of days - but as I learn more about who he is, what he needs, and how his brain works I can see that he has a future.
    Because what's the alternative? That I give up b/c statistics show that people with FASD are doomed? Statistics that are based on people who have had no supports, whose families and caregivers had no education, and who are surrounded by people who don't understand.
    I don't think you really understood what people like me were posting about on FASD Day. We certainly weren't downplaying the severity of the disorder, but presenting an alternative to the doomsday view of FASD and pleading for awareness, support, understanding, and education.
    If everyone believes that there is no hope for people with FASD then no one will help!
    Adrienne Bashista
    fafasd.org

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    1. I respect your hope. I think we need to redefine success. My foster daughter is active in her church. She has even started some new mission projects. This is her success.
      Her danger is in interacting with the general population, which severely limits her ability to support herself. - Delinda

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  3. Thanks for a much-needed article! My best friend adopted a child from Korea who more than likely has FASD. She has always had trouble abstracting and meets most of your criteria for the diagnosis. I so agree with your comments and keep writing about it!

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  4. It was once thought that a person with what we now know as autism would never amount to anything, but with years of developed therapies, parent training and support, and financial support for research, they are now discovering ways to help them live more meaningful lives. Why can the same not be said of FASD? I think it can, and that is what the advocates were trying to say. Not that this is not a devistating life long horrible condition, but that we CAN help these kids be more successful.

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    1. Thank your for your answer. Most people with FASD do receive an autism diagnosis. Therapies do help some problems related to the autistic behaviors. We haven't found a good therapy for the missing chunks of brain. - Delinda

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    2. Right I do understand about the "missing chunks of brain". I wasn't answering as someone on the outside, but as someone with TWO children with FASD. Thanks.

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  5. watersedegefc@aol.comSeptember 14, 2012 at 10:36 AM

    This was a very good post and something we all need to talk about. Yes, FASD can be devastating and life long and yes, we need to get our gov't and others to provide the dx, support, education and interventions that can make things better for all those with FASD. I guess, if we talk too much about better outcomes people might not understand how much help is NEEDED. Maybe we need to paint the worst outcomes b/c that's the only way we can get people's attention. And, we still are getting the worst outcomes in too many cases.

    We now know so much more about how the brain works. We have interventions, like nutritional therapies and neuro-movement therapies and therapeutic parenting that, if started early enough, can do a lot of healing. But, parents/caregiveers are not being given these interventions and until we get the help that autistic kids are now getting, we must continue the fight and we must get the word out anyway we can.

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  6. 100% agree. But I don't think the answer is saying that it's hopeless. The answer is in demanding help and banding together as parents, advocates, professionals, and people with FASD to raise awareness and force people to listen.

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    1. Oh yes, I would like help. My favorite place to get funding would be from a 100% tax on alcohol earmarked for services for individuals with FASD. However that means fighting the liquor lobby. - Delinda

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  7. I agree totally, I think the parents and doctors and nurses need to be better educated with the signs, symptoms, and treatment. And since it technically is a disorder then the baby should be placed on disability (it was a disorder he/she was not responsible for) and the medical that is provided with disability used to treat this disorder.
    I have a question that has nothing to do with this but yet might tie to it, whatever happened to MADD?

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    1. MADD is still around, but may have gotten as far as they can. Yes, many people with FASD do qualify for services from Developmental Disabilities. Being eligible for services is a huge factor influencing outcomes. - Delinda

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  8. I'm sorry for your frustration with the FASD community, and those you've experienced in your personal relationships with those with FASD.

    As with the statement above about autism, the same was true about other disabilities like Down syndrome. Years ago people with Down syndrome were put away in institutions. Now, many people with this disability live and work in the community. There are many who are not able to, but not all are unable. They all have an extra chromosome, but some are able to function better than others. The same is true with FASD. That's why it's called a spectrum disorder. There is a great variation in what those with FASD can do. Accomodations must be made, and it helps if other people have understanding that it is a life-long disability. That said, there is a variety of affects, and a variety of results. To paint the entire FASD community with a broad brush is unfair to those who do live coping with alcohol disorders. I know of those with FASD who are a gifted writer and another who is a car mechanic. Not everyone will be able to do those things, but some are. Not could be, but ARE doing those things. For those who need life-long protection and advocacy, I want those things available for them. I am doing my part to spread awareness and understanding, and my prayer is that someday it will be more well-known, with better services available, just as has happened with Down syndrome and FASD. This diagnosis was only identified in the early 70s. We have a long way to go for both services and prevention.

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    1. The broad brush goes both ways and that was my concern. The number of people who casually stated that "Oh with a little help they'll be fine" painted a horrifyingly optimistic picture of reality.

      My foster daughter has had therapies and counseling and support and dietary interventions. She still projects an air of vulnerability. Perverts still try to follow her home. People still take advantage of her because she cannot think on her feet. - Delinda

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  9. It is true that we cannot change the child or the brain damage that they have suffered due to prenatal exposure to alcohol. All we can do as parents is change the environment to help them function even slightly more effectively and change ourselves - our expectations, our measures of success. Our kids with FASD need to feel useful and know how precious they are. My job as a mum is to encourage the positive stuff he can be good at, keeping his self-esteem intact is paramount. I must continue to hope that I can achieve that.

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  10. Correct me if I am wrong but could this not be partially avoided if doctors automatically tested pregnant patients throughout the pregnacy so it can be caught before it becomes a problem?

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    1. Often the damage is done before a woman knows she is pregnant. My favorite prevention saying is, "Women of childbearing years who drink alcohol need to be on a reliable form of birth control." - Delinda

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  11. I awoke to this blog in my inbox after talking with my husband in bed for the last hour... We have 2 adopted kids from Russia and 2 bio kids. Our 13 y/o adopted son has full-blown FASD and is wreaking havoc in our home. The lies, the stealing, setting fires, breaking everything, sneaking out, sneaking within the house... With the daunting outlook and 3 girls to protect and our sanity waning, the thoughts of sending him somewhere came up this morning. Both sets of parents (my husband's and mine) have broached the subject as well. Our lives are chaotic and exhausting and it is affecting each of the 5 of us (in addition to him) in ways that my husband says are not "worth it. At what point do I look back and say, 'I knew this could happen. Why did I wait to do something?' " He is not a man of haste. This is not a decision we are flippantly coming upon. Who else has reached this place in raising adopted/FAS kids?? ~amy

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    1. You are facing a common problem. In my work as an advocate I met many families who ended up with their sons in out of home placement, usually mandated by the courts. Some of the youth who spent several years in placement now have reasonable relationships with their parents. You inspire me to write an article on creative out of home placement.

      Our kids adopted from other countries have so many issues in addition to the prenatal exposure to alcohol.

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    2. Hi Amy. We also adopted our son from Russia. He is now 15 and we have spent the last 3 years patching up the holes in the walls throughout our house. He has been diagnosed ARND (with co-morbid ADHD) about a year ago. We have altered the way we parent him and so far we have had good results. Basically we have reduced all the stress in his life. He does just part days at school and if we see him becoming anxious then we don't send him to school. We have got him involved in a variety of activities to give him some positive life experiences. The best so far is the work he is doing to help the elderly (a weekly exercise class for the over 80's!) He loves it and it gives him a real confidence boost that I doubt he has ever received through a day at school. Man it is hard work though so I feel for you. Search for some respite so that you can take a deep breath before making any final decisions. Sending my love. Claire (NZ)

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  12. Regarding the responses you've received: I suspect that like autism and other disorders, the severity differs with each individual. I doubt if a blanket statement regarding treatment can be applied to all. I salute parents who raise FASD children with love, patience, and understanding. I'm not sure I'd be able to do that.

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  13. Very true Sandy. This disorder is very individual. All we can do is share our experiences and what has worked for us in the hope that it will also work for someone else. It is trial and error but I am sure there are some gems in every Parents FASD story.. Claire (NZ)

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  14. Fetal Alcohol is a spectrum disorder, much like autism, so yes, there is a whole variety of effects across a broad range. I didn't hear any "giving up" in Delinda's post - I did hear, and concur with the difficulty in getting folks to understand that this is lifelong - it's not "like all teens" and persons with FASD need more than most are willing to acknowledge in terms of lifelong help.

    What is also true of FASD, that is not, I believe - correct me if I'm wrong - is that about 90% of folks with FASD also have a co-existing mental illness of some sort, which muddies up the waters quite a bit. We have 2 adopted children, siblings, who are on the FASD spectrum, and because executive functioning is so screwy in these kids, helping them grow up and understand the world is very different from many of those with autism. < As an aside, we didn't know until our son was 12, and in major trouble with school, law enforcement, and all the other possibilities, that our kids were on the FASD spectrum. Sure would have been nice to know before!>

    There are similarities in how social skills, speech, and behavioral issues occur in both autism and FASD, but in my opinion, the huge difference is how damaged executive functioning is. Persons with FASD may be able to talk the talk, but translating what they "know" and can speak into action just doesn't happen because of the damage to the brain.

    Thanks, Delinda, for what I think is a courageous, and realistic look at the long term outcomes for those with FASD. Yes, some will be able to function more easily in the world, just as some with autism do. But many - most? just never get there. And it would be really nice to have some heroes out there speaking for the needs of the FASD community as there are with autism, diabetes, and other illnesses.

    Joni Stoneking

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  15. There are a number of things happening to begin supporting our young people. A national movement has begun called FASD COMMUNITIES and we need more participants - it is parent led. Also we are in year six of the SMART PRE-K program for 3-5 year old and now have level 1 and 2 published for preschools, head start, and families . Our results are showing children maintaining peer level to age 8 which is huge - Jodee Kulp

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    1. How can I find out more about FASD COMMUNITIES? Is it a type of residential help? Parents banding together and sharing costs to hire "external brains" to help our adult children with FASD?

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  16. There are a number of things happening to begin supporting our young people. A national movement has begun called FASD COMMUNITIES and we need more participants - it is parent led. Also we are in year six of the SMART PRE-K program for 3-5 year old and now have level 1 and 2 published for preschools, head start, and families . Our results are showing children maintaining peer level to age 8 which is huge - Jodee Kulp

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  17. This is what I find to be the take-away statement from Delinda's blog post:

    "Individuals with FASD cannot learn from their mistakes. They cannot connect rules to behavior. They just never develop adult level judgment and reasoning. Most individuals with FASD possess the sense for safety of a three year-old."

    The cognitive deficits in the first three sentences are of ALL persons with an FASD, not of SOME or MANY or MOST of them.. It is not phrased with the conditional MAY not be able, but with CANNOT and NEVER.

    The way I interpret this information, the first three statements are the cause of the fourth statement: Because of what ALL persons affected by FASD cannot do and will never do, they cannot and will never be able to make decisions about their own safety any better than a three-year-old child.

    This information is so powerful! It can be used in applications for benefits and services for individuals from their state department of developmental disabilities. Defense attorneys and social workers can use it. It could be used to establish laws and policies protecting persons with FASD from being liable for criminal and civil "crimes. (It could also make them ineligible to vote, marry, own property, make medical decisions, drive, travel, etc.)

    I am concerned where ALL changes to MOST between the first three sentences and the last sentence.

    If I were a disability analyst, state bureaucrat or an assistant district attorney looking for a way to exclude a person with an FASD from receiving benefits or differential ("lenient") sentencing, that place between ALL and MOST is what I would pounce on and exploit with all the data I could find.

    Does anyone know what accounts for some persons being able to be less vulnerable (and thereby more responsible, more "culpable") than a three-year-old? Is there a level of vulnerability (eight, ten, 12, or whatever age) that NO person with FASD EVER exceeds?

    And if so, how do we know--where are the data? Is the "vulnerability age" in FASD directly linked to IQ? And only to IQ?

    And how do we determine vulnerability age for a person with an FASD who has an IQ in the Average range or higher?

    Is anyone doing research on this?

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  18. Wonderful and informative article. You've been on the front lines of this issue, and I thank you for the information. I can certainly understand your frustration.

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  19. someone needs to find a Lawyer who is willing to take on a milestone case like this, and make it a class action suit from a large number of victims of FASD. Has one tried as of yet. I think once it's put into motion you get a lot of PR to promote the case and have picketers outside the court house. I believe it could be done, and if the judge rules against it, then keep filing appeals until they get sick of seeing you in court and all the citizens mad. If people could hear this from your perspective ((WHICH IS WRITTEN AND EXPRESSED VERY WELL) then maybe someone out there might take a chance on a case like this.
    Just a suggestion.

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  20. I too believe we need a class action suit against the alcohol companies. Thy need tO pay for this. We need help. These kids
    Need help
    I wish our son could live somewhere with real help. But jail is probably the best place right now that can keep him safe from himself.
    I would help any way I could. I would be outside courthouse picketing or holding signs etc. anyone who does this. Let me know. Tell me what to do!

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