Tuesday, February 3, 2015


Image is a staircase perspective by Luciano Testoni taken from wikipedia

I am so very grateful to have met so many adults in the FASD community and for how openly they share their perspectives.  I was chatting with R.J. Formanek about fitting in vs standing out.   I get pretty passionate about respecting neurodiversity and not forcing people into molds.   R.J. reminded me that “sometimes remaining invisible is a good way to avoid things. Bad things, such as stigma and judgement”  He goes on to say that being invisible “can also cut you off from good things like sharing and love.”  R.J. told me “In the end, I enjoy having the ability to either fit in, or stand out. Not many people are lucky enough to have that 'ability'.”

Looking at Little Man’s ability to “pass” as neurotypical in some environments as a strength seems completely foreign to me but I respect R.J. and the other adults I have connected with so I need to really spend some time with this perspective.  I value these folks not only for the window they give me into Little Man’s perspective but also for their combined experience and accomplishments.  These are some pretty awesome people, ones I am proud to call friends, so to dismiss their voices or perspective would be not only short sighted and rude but, well, arrogant.  (Boy looking into the face of your own ableism is not pretty)

My first impulse is to counter with how much better it would be if we could change the world so no one felt the need to cultivate invisibility or blending in as a strength, but that is just defending my perspective.  I say all the time – I can’t know what it is to be neurodiverse – I’m just not.  I’m about as neruodamntypical as you get.  So if I can’t know the other perspective without asking – well then I need to really listen when I hear it right?

I want to chat about this more, with R.J. and with others, neruodiverse and neurotypical.   I really do believe the ability to enjoy or appreciate standing out and being unique comes from seeing difference being valued by others. If kids / people do not see others in their lives (especially people in “authority” like teachers, parents, other popular figures) value their differences then where will they learn it from? What upset me in my son’s IEP meeting was definitely not simply that someone commented that my son has the ability to "blend" but the feeling I got that it was expected he should - that not blending was not ok.  I don't want him internalizing that message. I don’t think it is healthy.  I want him to feel valued and appreciated just as much when he doesn't blend in as when he does - so he can feel good about making either choice for himself. Does that make sense?

But, clearly, I have some work still to do on me.  It may just be my bias – my perspective - that the need to value difference is so very important that made me read more into a comment than was really there.  That belief is so strong for me I was ready to gloss over R.J.’s words without really spending some time with them at first and that is not ok.  Besides - respecting my son, the person he is, means someday respecting if he chooses to “pass”.  After all that would be HIS choice to make right?


  1. Of course, everyone should be valued for who they are and shouldn't be expected to change to "blend in" better -- so long as their actions do not harm others.

    I work in a small municipal office that offers internships (paid) to young adults with developmental disabilities -- most of whom have been terrific, many of whom have been hired after the internship's done.

    Several truly awful interns have had FASDs. "not blending in"? Not an issue.

    Stealing stuff, lying about having done so ("um, the lunchroom door is made of glass & half the office just saw you take $$ from the coffee jar, please put it back"), watching inappropriate material on other people's work computers, failing to ask for help** and an inability to accept even the most constructive of criticism were HUGE FLASHING RED issues.

    * three awful interns. Not all people with FASDs, not all interns with FASDs. Only. Three.

    ** nobody knows what they're doing when they start! We're happy to help! Ask all the questions you like! There's even an on-site job coach (for all interns from one program, who would LOVE to help! She gets PAID to help!).

  2. Suzanne
    Just a quick clarification before addressing your comment - I don’t think a desire to “belong” is damaging – I’m speaking specifically about the cultural pressure to be indistinguishable from everyone else in order to achieve belonging. I think the cultural pressure to “pass” is so particularly damaging for those with FASD (although I don’t think it is healthy for any group) because it leads them to cover up their disability in ways that only further separate and isolate them.
    The example you are giving a good example. Inhibited impulse control is a common disability associated with FASD. Impulse control is actually a very sophisticated mental process – which is why many– including neurotypical people - struggle with it their whole lives. With FASD added in - the portions of the brain that allow a person to experience a “want”, delay action in order to judge that want against social norms and / or predicted outcomes, and suppress acting on that want based on that evaluation are very often the parts that are damaged or even missing completely. When someone acts totally irrationally by taking something in full view of others then insisting they didn’t take it I would say that right there is an example of the physical inability to control impulse caused by brain differences.
    Where this example comes back to the pressure to pass or blend , to me is in the denial. If it were truly acceptable to be different in our culture, a person could say - “Look I’m sorry. I have impaired impulse control abilities. Could we please handle the coffee payment differently while I am here? Is it possible to have a locked location for the money?“ Could you imagine walking into a new employment situation and saying that? I can’t. Because I don’t believe that it would be met with understanding and support – it would be met with judgment. Ditto for the computer issue. For example would your company be willing to hire someone who said outright in their interview, “I have an impaired ability to inhibit impulses. I need a position that does not allow me access to computers or cash unless I am under direct line of sight supervision at all times.” If so I think it might be the only workplace to do so in the country. And people affected by these kind of disabilities know that. They know that the world judges their disability as VOLUNTARY. In fact most have completely internalized that judgment. they feel deep shame over something that they cannot control. They feel defective and bad for not being able to. They may cover with aggression, defiance or indifference but they feel it.
    I was actually talking with a woman I know about an error she made and how she dealt with it recently. I don’t feel comfortable saying more until I have her permission to share it but I dearly hope she will grant that because I would love to post about it. I think it perfectly illustrates the point I am fumbling to make.

    1. The impulse control thing is an issue for many of our interns -- TBIs, strokes, mild intellectual disability and, for lack of better word, behavior along the lines of a 11-15 yo is about par for the course. Most are terrific -- hard-working, a pleasure to work with, really good at their jobs. Including folks who are literally missing pieces of their brains from TBIs.

      If that's how you define an "accepting" workplace then mine does not and probably will never meet -- because we believe the folks we hire are CAPABLE, with appropriate supports, of doing their job at least as well as a NT person can. The training takes a bit longer, on-site job coaches support the individuals and staff in making the "little" adjustments to help folks succeed -- and is based on the Walgreens approach. Even Randy Lewis abhorred "charity" hires.

      I wouldn't, couldn't hire a person who requested the accommodations you list -- they couldn't do the job. Not even with a TON of support coordinate recreational facilities/sports leagues for a tiny city city.


      Pretty much everybody goes through life feeling like a giant, embarrassed idiot the vast majority of the time - myself included. It is by no means limited to those w/FASDs.

    2. We agree - as I said when you commented before, your workplace is probably not the right placement for those particular interns. Comparing FASD to TBI or stroke is not really appropriate by the way. A healthy brain damaged by an insult of some sort has access to other neural pathways (through neuro plasticity) to recover some level of lost ability. A brain damaged at the cellular level as it formed does not have the same ability There are similarities in the conditions of course - both deal with brains and the function there of -but the differences are profound and basing expectations for one condition based off the abilities of the other is just not realistic. If you are interested in the actual neuro science of FASD I've been fortunate to meet a couple of neuro scientists I could recommend.

  3. Posting for Jodee Culp - sent via private message since she was having trouble entering from her cell

    This is an excellent discussion and I hope you don't mind I jump in. Understanding and working with FASD and all of the jumpstarts and hiccups in the process is complicated and difficult. I could go into the details of the why the things happened in your situation Suzanne, but the result was disappointment in what it sounds like your really believed would work out.
    I continue to work in this field trying to figure out strategies and opportunities that will work, the process is slow - very slow and the successes do happen - just not in the way I had planned. I have learned over the years (28 of them) to take my Jodee out of the equation when walking and trail guiding. I have learned that self-discovery in joy solidifies commitment and learning and that when the person feels safe, when (yes) accommodations are first put into place and then in some cases slowly removed - you reach much much higher NT levels. The reality is that a person with FASD can learn and they do grow. They are able to add to an organization when you discover what is working and what is not working, when you find their comfort places and strengths and build from those points. It means much much more effort on our part. So much sometimes that I've wondered if it wouldn't break me.

    But the reality of this is --- WHEN we find the puzzle pieces to connect their world to ours in a healthy way - persons who have the life, whole body, cellular challenges of FASD do soar.

    We expect sustained soaring and wings that have already been broken get weary and need rest - so one of the pieces I have learned is -- this is your job and when you need a break these are three jobs I need done -- just hand me the card you are going to do next and I will know where to find you... Together - with the adults living with FASD and the people living in the NT world we can figure this out.

  4. Being an adoptee who wondered her whole life about her "quirks", and being diagnosed at 34 years old with FAS, now I get it. My mom and I were talking a couple weeks ago when she was visiting, and she told me I was always different. Not in a bad way, just different. She attributed it to me being adopted, which is part of it, absolutely. After I got my diagnosis though, she has a deeper understanding of me and why I am the way I am. I have issues with impulsivity. Actions I have made that have negatively affected my marriage and friendships. I am seeing a beahvioral cognitive therapist, who is teaching me "Mindfulness." This is consciously stopping to think before I act. It doesn't sound hard, but to someone with FAS, even a neurotypical person, it is difficult. I am making progress. I used to make bad decisions, and only think of the consequences after the fact. If something was going to make me feel good and happy, even if the aftermath was detrimental, I still went through with it. Now I have an answer to my impulsivity. I still own my decisions, and work every minute to make better decisions. The diagnosis has made me realize that I am not just a "bad person." I am a good person who has quirks in her brain. I can navigate those quirks though and am making strides every second.

    1. Rebecca - Thanks for joining the conversation!! I am a big believer in the importance of diagnosis. I am glad you were able to get yours and that it has lead you to greater self awareness.

      FASD is a true spectrum disorder so an affected individuals ability to develop control over impulse is going to vary from person to person. I am thrilled to learn the mindfulness technique is working for you!! We are working on the same kind of mindfulness for our son (he's only 8) in hopes it will help him as well. It may (and your success encourages me) - but we realize it also may not. It all depends on how differently those parts of his brain have formed. If mindfulness doesn't work for him we'll continue to look for techniques that do - and continue to make environmental modifications (accommodations) we need to in order to keep him safe.

      Again - thanks for being here!