Monday, July 28, 2014

Understanding, Support, and Accommodation First

I’m going to say something very unpopular in this post.  If you disagree feel free to tell me so but please avoid personal attacks and egregious use of inappropriate language.

I think it is time we put aside FASD prevention.

For the last 20+ years the primary focus relating to FASD has been prevention.  I’d argue that most of that effort has been unsuccessful in moving the dial on the number of alcohol exposed pregnancies per year.  A big part of that failure is probably driven by the huge cultural role of alcohol (not just here but around the world).  We have alcohol at sporting events, alcohol at celebrations, alcohol at wakes, wine at the Lord’s Supper, cocktails at fancy events, champagne to celebrate the New Year, kegs at university parties.  Tennessee Whisky, Scotch whisky, Russian Vodka, German Beer, French Wines, Japanese Sake, Peruvian Pisco - We are awash in spirits.   No matter what studies are published, what statements by scientists and the surgeon general are issued, no matter what print, radio, or broadcast ads are run more alcohol exposed children are born every year.

I’d like to see us, all of us involved, persons affected by FASD, those that love and care for them, those that work for or represent them, those that lobby on behalf of prevention groups, all of us stand up and demand that the funds that are not achieving results in prevention be redirected  into other efforts, like diagnostic services.  And not just for kids but across the life span.  Let’s detail the loss of human potential, and economic productivity.   Did you know more people are affected by FASD than by AIDs at the height of the AIDs crisis in the USA?  Where are the lapel ribbons or the movies about people fighting for FASD sufferer’s dignity, worth and civil rights?  Let’s uncover how big and pervasive this issue really is.  Let’s take those numbers and start lobbying for the same services and support that are given to those with hearing, or visual, or mobility impairment.* Let’s demand that equal moneys be spent on FASD as are currently being debated for re-authorization  earmarked toward Autism. 

Maybe once the magnitude of the problem is no longer swept under the rug and the cost of the issue is there right in everyone’s face – then the conversation about prevention might be able to have an impact.  And if not, hopefully life will be improved for the millions who are currently suffering the effects in silence. 

*I am by no means saying that folks with other disabilities have it easy or have all the support that they might need.  Only that there is much more focused on support and accommodations for those recognized physical disabilities.  I want our focus to mirror theirs.


  1. Recommending that some of the funds currently used to prevent FASDs be instead used to provide services for folks with FASDs is a pretty good idea.

    Relatively straight forward to provide services for kids... not so much for grownups. I work for a municipal government that has a fairly good paid internship program that is run in conjunction with local vocational high schools, which aims to prepare individuals with disabilities for the workforce (all sorts of disabilities, including FASDs).

    Oddly, any and all attempts at placing individuals with FASDs have pretty much ended in disaster. I say "oddly" as my staff includes two former interns -- a young woman with DS (intellectual disability) and a man with TBI (brain damage), who are terrific. Hard workers, good at their jobs (signing in visitors + delivering internal mail, respectively) and just a pleasure to have around. They ask for help when they need it (and we're happy to provide it -- because, well, there's really no way to deliver John Smith's mail if you don't know the "address" of his new cubicle).

    FASD usually presents as a combination of brain damage + intellectual disability... and yet every single time I've had an intern with an FASD it is a total disaster. The three interns with FASD we had for, whatever reason, could not ask for help. Literally. Were not CAPABLE of asking for help. Angry meltdowns, near-physical altercations and an inability to take direction on a level I have never, ever seen before.

    The FASDers (all of 'em, though I hate to generalize) were not particularly cooperative during training, randomly hid mail in drawers, behind the garbage cans, etc. when they didn't know a person's office was (wouldn't ASK, wouldn't look it up in the staff directory) and I practically have PTSD flashbacks of the fallout from politely requesting that Mr. Intern deliver the internal post first, every day, and by no later than 10:00 AM. And the stealing. Oh the stealing. The inappropriate use of computers.

    Never, ever again.


    The efforts to prevent FASDs? I'd hazard a guess they actually do/did work quite well, for all but two groups:

    1) women who don't yet know they are pregnant who drink
    2) women who are addicted to drugs/alcohol who drink while pregnant (and who cannot stop, even if they wanted to)

    This business of jumping up and down yelling that ANY amount of alcohol is terrible for a fetus, because pregnant ladies will interpret a study that says the odd glass of wine (small 4 oz glass, maybe once every couple of weeks, as treat) while pregnant is unlikely to harm the fetus -- a risk not unlike that associated with having a bite of yummy brie -- will be interpreted as "woo hoo! I can binge drink every day and my baby will be fine!!", which is SO clearly not the case.

    I'm one of those of women who, with my doctor's blessing, did have the odd glass of wine / bite of brie as a treat while pregnant and the kidlets don't appear to be the worse for wear.

    1. Holy smokes. I don't know which comment to address first. Shocking how ignorant the masses are. With any luck at all you only knocked a few IQ points off your children, none the worse for the wear, eh?

      And the lack of support for the individuals with FASDs is astounding. Shocking really. This is a brain based disability. I'm quite certain you would be far too PC to insert any other disability into your tirade...i.e. Down Syndrome, Traumatic Brain Injury, etc. You are the perfect example of why supports for individuals with FASDs are so important. Thank you for being so grossly educated. A wonderful example.

  2. Dear Anonymous

    Thanks for commenting. One house keeping issue - While I am happy to respect peoples wish for privacy on line, please note that I have asked that all commentators provide a name (or at least a consistent pseudonym). This request was quite a way back so I will update the blog to make that more easily visible.

    There is a lot in you comment. I'm not planning to address point for point (although if you are interested in my doing so I certainly could). I would like to ask you to consider, however, that your experiences with unsuccessful FASD candidates for internship happened because there was a fundamental mismatch between the candidates' capabilities and the tasks assigned. Lack of understanding, coupled with shame over not understanding what they know their NT peers can, often looks like lack of cooperation, hiding lack of competence (hiding mail, not asking for help) has often become a (dysfunctional) coping strategy to folks with FASD who have been punished all their life for not meeting expectations, inability to plan, manage schedule, self initiate are all primary symptoms of their brain based disability. Are you aware that people with FASD are usually developmentally 1/2 their chronological age (and some may be much younger)? This is complicated by the fact that they are usually able to "speak" (expressive verbal capability) at or sometimes even above a level that matches their chronological age. their receptive verbal skills however are usually lower. How "old" were your interns? 18-20 - meaning 8 to 10 developmentally? Were they in a position suited to their developmental age? Was there any discussion in the placement process of their specific neuro psych profile? I would suspect not. None of which is to say that you did not experience real problems with them as employees or that you are not right to have concerns about any future hiring. But all of which points out the need for MORE and BETTER services to assist folks with FASD - help them to know their own areas of strength and weakness, help match them to appropriate work opportunities, etc.

    1. Hi, I'm Caylee aka Anonymous.

      The interns are usually a bit older -- 22-24ish, as the high school extension provides training, job coaches, etc for individuals with various disabilities until they turn 25. The program we hire from caters to individuals with mild/high end of moderate intellectual disability -- and tend to present as distractible 10-13ish year olds. FASDers included.

      My understanding is that FASD often (though not always) presents as a cross between an intellectual disability and TBI. I've had lots of great interns with IDs + with TBIs. My ex-intern staffers, are great workers. So, in theory, an intern with an FASD should be a good fit -- but hasn't been. Other not-neurotypical interns who do seem to function as preteens/young teens who theoretically have been great -- the FASDers, not so much. And I have no idea WHY.

      Actually, I do: Inability to ask for help + inability to take direction or correction. In my limited experience, this really is unique to FASDers. It's maddening -- there are no consequences for asking for help! We expect newbies to need help + are happy to help them!

      The interns come from the intern coordinator, as I trust his judgement. Pretty much everybody, with the notable exception of the FASDers, have been great.

    2. Caylee, First thanks for being willing to talk and leave a name. Sometimes folks are really offended by that request. I don't understand it but it happens.

      FASD often presents as a cross or mox of various other neurocognative diagnosis. (ASD, ODD, Bipolar, etc.) It can also often co occur with them too which can get even more complicated. FASD characteristics are usually divided between primary and secondary. Primary are the brain functions themselves that are affected - memory, impulse control, sensory integration, and Secondary are reactions or learned defenses to a lifetime of dealing with their disability - frustration, anger, masking behaviors trying to "blend". i suspect, but of course don't know, that you were probably seeing a bit of both making your interns unsuccessful. I can't tell you haw happy it makes me - successful or not to know that there was an opportunity for them to try. Those are really really hard to find. I wonder too about the job coaching program. My foster brother was in one as well as part of his transition from foster care. Unfortunately it was not a good fit for him and he did not do well in it. He has done well in some jobs but they had to be highly structured to his capabilities. I do agree that lack of personal insight is an issue for many with FASD. It is related to their challenges with abstract thinking I believe. Insight is a skill they can be taught but it is one that is learned very slowly I think. I know some awesome adults with FASD that are very self aware but I think they would agree that it was a hard won skill for them. Some of them are even beginning to coach and mentor other people affected. Part of the issue is that there are not programs that specifically teach mindfulness and self awareness for folks affected as they are growing up. I wish we could get that added to special - or even general - education programs. I can't see how it would hurt any child to learn those skills. Even neurotypical people don't always pick them up along the way.

    3. Thanks for responding!

      I get the primary vs secondary disabilities thing -- what I don't get is why the asking for help + inability to take (kind, polite, hey-I'd-prefer-you-did-it-this-way-instead) direction thing seems to be more of an issue with the FASDers. Given the demographic the intern program caters to, pretty much ALL of the young adults have similar memory/impulse control/working memory/ID/etc deficits that are likely to result in frustration/secondary disabilities - but that really, really doesn't seem to be the case.

      The joint municipal government-vocational skills training program is pretty great -- the kids get 4 x 3 month paid internships and about half get hired upon graduation. The coordinators have a knack for putting kids in division where they'll "fit".

      There are good vocational/employment training programs for individuals with disabilities out there -- my fave cousin in SC (who just happens to have DS) landed a job she loves at the Walgreen's warehouse years ago upon graduation from it :-)

      (I have two sisters adopted from foster care -- my BFF from age 4 + sister -- right before our senior year. Who are amazing. My husband and I were planning to foster an older kid but the MAPP trainer scared the snot out of us).