Trump Card

photo credit-iboy daniel
creative commons license

Kristina Chew got me thinking today with her post on "Race, Diagnosis, and Identity". In it, she talks about her son Charlie's biracial (Asian/Caucasian) heritage, as well as his other difference, his autism. Kristina also references an article by Peggy Orenstein in the New York Times Magazine called "Mixed Messenger", which discusses Barack Obama's biracial status as a candidate, and being biracial in America today.

When Liz and I were contemplating adoption, we thought long and hard about whether to adopt trans racially or not, which race children we would accept, and what sorts of disabilities we would accept (our children, Buddy Boy and Sweet Pea are biracial African-American/Caucasian). It all sounds so clinical, cold, and calculating, but that's what the adoption process asks of you. You are forced to fill out forms stating what types of children (sex, age, race, disabilities) from what types of parents (drug abusing, smokers, psychiatric issues) you are willing to accept for placement.

I knew that kids who had been adopted often had some issues to work thru regarding having been adopted, and I also knew that kids who had been adopted trans racially sometimes were OK with it, and sometimes felt very much like outsiders amongst their own race when they grew up (and resenting their parents who raised them). I always figured that issues of race would rank high within our family as our kids grew up.

Although our kids are both black and white, I realize that in many places and situations in American the "one drop" rule applies (as long as you have one drop of black blood in you, you are considered black). I knew that even though Liz and I would try to do things to make our kids feel comfortable with their racial identities, that we would most likely not be able to do this fully, and perhaps not even well. And I didn't want to cheat our kids in this very important aspect of their lives. On the other hand, I knew that there are more African-American and biracial African-American children waiting for adoptive parents then there are minority parents waiting to adopt. Thus the choice wasn't necessarily between our kids going to an African-American or biracial couple rather than us, but rather perhaps having to wait much longer to be adopted (or not being placed at all) or being placed with us.

I also worried about how African Americans would accept us as a family. I knew that part of having them grow up being comfortable in their skin would involve us seeking out relationships with African Americans, and I didn't want our kids to see us getting the cold shoulder from black people. This, it turns out, was a totally unfounded fear. Once we adopted our kids an amazing thing happened. I have never felt anything other than acceptance (and even love) from African Americans I know.

So I guess the bottom line was I expected that issues of race would be foremost with us as a family, followed by issues with adoption. Little did I realize when I started this journey as a dad that autism would trump both of those (at least for Buddy Boy). For the last 5 years autism has made my previous concerns regarding race and adoption fall completely to the wayside. I still worry how issues of race will affect my children in the future (as well as my ability to prepare them for the discrimination that they will feel once they leave the protective cocoon of being accompanied by their lily white parents). I also worry specifically how issues of autism and race will interact in the future with Buddy Boy. One of the biggest fears I have involves Buddy Boy having a meltdown as a teenager, and being perceived as an "angry young black man" by a police officer, and being arrested (or worse) because of the interaction of his disability with his race. Orenstein in her article mentions

A few weeks ago, while stuck at the Chicago airport with my 4-year-old daughter, I struck up a conversation with a woman sitting in the gate area. After a time, she looked at my girl — who resembles my Japanese-American husband — commented on her height and asked, “Do you know if her birth parents were tall?”

While I don't think anyone should have to suffer other's assumptions about their children, given the choice of someone assuming Buddy Boy was adopted internationally vs. someone assuming he was a gang banger, I'd take the first assumption in a heartbeat.

But for the last several years learning to deal with all the myriad aspects of Buddy Boy's autism (and more importantly, fighting against a system that wanted to label him as behaviorally disturbed for education purposes rather than autistic) has consumed most of our energy on a day to day basis.

I know that with Sweet Pea we'll still have the issues of race and adoption to deal with. At 5, she's already hit us with the "I wish my skin was white like yours" plea. While I know intellectually that statements like this are to be expected in trans racial adoptions, it sure made me feel inadequate as a parent at the time. Had living in a racially mixed neighborhood, playing with the black kids across the street, having a black babysitter, reading to them about black accomplishments, going to museums, had none of this had any effect? Had we neglected Sweet Pea's development of racial identity because of our time spent trying to get Buddy Boy into (and keeping him from getting kicked out of) a proper educational setting?

I guess in the end there are different trump cards at different times. I also know that part of being a parent is to feel constantly inadequate and not up to the task.

She's So Beautiful

These are the words that come out of 4 out of 5 people's mouths when they first meet our daughter, and it's been bugging Liz and I. It's not something that we think about every minute of every day, it's just one of those little things that bug us.

Why, you ask?

Well, we've asked ourselves the same question. Why does this comment rankle us and just not feel right? It's not that she's an ugly kid. In fact, she is very cute (you'll have to take my word for it, as I'm not going to post pics here that would fully identify her). She has a smile that lights up a room, and enough social skills that she could compete with a politician in working a room. And we don't dress her like she's in a beauty pageant. So what's so wrong about pointing out that she's a good looking kid?

Well, for one thing she's only 5 years old. And people have been saying this for at least the last 2 years. And I just don't think it's appropriate to talk about really young girls as "beautiful". At least not when you first lay eyes on them. There's something in the comment that just sexualizes this young child by referring to her as beautiful. I mean, isn't there anything else that you might say? Like "She has a nice smile", "My, she's well behaved", or just "Hi, Sweet Pea!". OK, so most days they'd be stretching the truth if they said she was well behaved, but we wouldn't mind.

Unfortunately, we think that that the base reason that people say this probably doesn't have to do with people purposely trying to make her a sexual object, but it's just as bad. We've come to the conclusion that people do this because we are white and Sweet Pea isn't (we are a family thru adoption-both of our kids are bi-racial African-American/Caucasian). So when people first encounter Sweet Pea being introduced as our daughter, they're naturally a bit taken back. I get that. She doesn't exactly look like us. So while they're feeling awkward they feel the need to say something nice, and so come out with the "She's so beautiful" comment.

While I don't really think people are trying to be malicious, I wonder why this particular comment comes out. I suspect that it might have to do with the "unofficial racial preference rank order for adoption", which places relatively more value (in decreasing order) on kids that are white, asian, hispanic, and finally African-American. Being of mixed race (with half being Caucasian) bumps you up a half notch. So I think a big part of this comment thing is just people feeling sorry for us that we adopted kids that were of "lower preference", and wanting to say something to make us feel better.

Thus far Liz and I just usually mumble something non-committal, and go on from there. We don't think that people are consciously being rude, so don't make a big deal out of it. We sometimes think that maybe we're just being overly sensitive, but the comment just has never felt right. So, dear readers, let me know what you think. And if you ever happen to meet us on the street, you now know what not to say.

The Ivy Ceiling

What happens after high school?

That's one of many questions that many of us that have kids with disabilities think of. Will our kids be able to go to college, get a job, live independently? Will they be happy?

Two young people with disabilities enrolled in Florissant Valley Community College in the St. Louis, Missouri, USA area. They had hopes, dreams, and scholarships they had earned during high school. What happened to them is detailed in a story found here.

...It happened to Jennifer Adelsberger two years ago. She attended Florissant Valley for four years and was close to getting her associates degree in early childhood education. She has disabilities, Attention Deficit Hyperactivity Disorder and has difficulty in reading comprehension. But, with help, she graduated from McCluer North High School.

However, at Florissant Valley, Adelsberger couldn't get her degree because her advisor, she says, told her that she would not be able to graduate. She needs four classes to get her degree; a math class, two in student teaching and a fourth in class training with children.

After she was told she wouldn't be able to pass those classes, she left school and has been looking for work since. Her father, Larry, says she's had her heart set on being a teaching assistant, working with young children, and what happened at Florissant Valley has affected her outlook and personality. ...

It would appear that the math class is the stumbling block. I find it hard to believe that the school can't identify a tutor that could help her to get thru that one class. I'm sure it couldn't possibly be that this young woman looks and talks a little different from the norm, and they didn't want her student teaching. Surely there is no other discrimination involved. This is born out by looking at the other case, in which things seemed to start out just fine:

...For Jeremy Andert, the fall at Florissant Valley was much quicker. He too had an A+ scholarship and he graduated from Hazelwood West High School in the spring of 2006. In the Fall, he began at Florissant Valley, taking just a remedial reading class and physical education. It was to be an easy transition from high school to the rigors of college.

He was doing well in reading and physical education. In fact, his teacher had written him a mid-term report, indicating he was passing the class and was succeeding in school. ...

It sounds like Jeremy was approaching things in a realistic manner, and things were going well. His mom thought he was doing well, too (who wouldn't, having been given the satisfactory mid-term report).

...However his mother, Cathy Andert, had a meeting with a school advisor, who told a different story. Cathy says the advisor told her that she didn't care to have "retarded" students in her classes and she wasn't "having" it. Cathy says she was taken aback by those comments. ...

I think I would have been more than "taken aback" by those comments. Ms. Andert was much kinder than I would have been. The school, for its part, offered this lame response:

...Laura Sternman, a vice president of student affairs at Florissant Valley, says such comments are not the college's "attitude" taken on campus. Sternman says the college does all it can to help disabled students, saying the school is "very proactive" when it comes to such help. ...

Actions speak louder than words, and Florissant Valley's actions speak volumes. And so does its web site, where you can follow a link from this page called “You Should Know the Difference Between High School and College for Students With Disabilities.”

There are things written there, such as

A college education is a privilege instead of a right and special programs are not required

Students are responsible for their own behavior and inappropriate behavior is not tolerated

Students are expected to do the same work in the same time frame as all students

These hardly seem consistent with an institution that says it is doing all it can to assist disabled students.

For those that are not in the US, community colleges are 2 year public institutions that offer lesser than bachelor degrees, usually "Associate of Arts" degrees. Students can pursue various courses of study there, or use it as a stepping stone to a four year institution. As can be gleaned from the above, education at the college level is not governed by the same sets of rules that apply to education up to that point.

Various people on the web have commented regarding how some colleges in some instances are providing accomodations for students with special needs. But it appears that their legal responsibility is only to supply equal access (things like physical access, access for guide dogs, etc.), and there is no requirement for them to accommodate developmental or behavioral disabilities.

While some colleges seem to have greater outreach than others, it appears that at least some people at Florissant Valley Community College feel so emboldened that they can say that they don't want to have to deal with 'retarded' students in their classes.

If you wish to express your opinion to Laura Sterman personally, here is her contact information:

Laura Sterman
Vice President of Student Affairs
St. Louis Community College-Florissant Valley Campus
3400 Pershall Rd.
St. Louis, MO 63135

314-595-4200

lsterman@stlcc.edu

You also might want to copy your note to the president of Florissant Valley, Ms. Marcia Pfeiffer:

mpfeiffer@stlcc.edu

I could not find a public listing of the e-mail of Henry Shannon, Ph.D., the chancellor of all of the St. Louis Community Colleges, but if it follows their convention, it should be

hshannon@stlcc.edu

Selective Outrage

While driving in to work today I heard a story on the radio regarding a special needs children's orphanage in Iraq that was recently raided. According to the story, a routine military patrol in Baghdad happened to look over a wall, and saw the following:

...Inside the building, a government-run orphanage for special needs children, the soldiers found emaciated little bodies tied to the cribs, CBS News reports exclusively. They had been kept this way for more than a month, according to the soldiers called in to rescue the dying boys. ...

..."The kids were tied up, naked, covered in their own waste — feces — and there were three people that were cooking themselves food, but nothing for the kids," Lt. Stephen Duperre said. ...

The tone of the article was one of shock and dismay. As if, in a country where its former leader would use nerve gas to kill his own citizens for the crime of being from a different tribe than he, we should be surprised that special needs kids are abused and left to die.

But, my overarching reaction was something more akin to "Hey, where've you been, CBS? You don't have to go to Iraq to see abuse of those who are in institutions." Perhaps you should look a little bit closer to home. For starters, you could look at how UNICEF has cataloged systemic abuse of children in institutions all across the world, including in the West.

One could also go to this web site to see stories from former patients in mental institutions in the US. Another place closer to home would be to read Amanda Baggs' list of ways institutionalized people are abused in institutions. Finally, abuse of autistics both in and out of institutions is cataloged by Joel Smith here.

I guess the bottom line is while I think people should be outraged at the treatment that these children were/weren't receiving, I think that CBS missed an opportunity (responsibility?) to also shed a little light on a lot of abuse that happens a lot closer to home, here in the US.

Autism in Black and White

photo credit-Blisterman


Earlier today Kristina Chew on AutismVox had a great blog about “Race and Age of Autism Diagnosis”. I started to write a response on her blog, but after I got to 4 paragraphs thought I should just write my response here, rather than totally hijack her blog.

I have seen studies that relate how blacks are diagnosed at a later age than whites, and have not been surprised. Because of my unique position (white physician parenting an autistic bi-racial (African American/Caucasian) 7 year old, I have a few things to say on the subject. About the only thing that could have made this article more relevant to me would be throwing adoption into the mix (both our kids are adopted). But even if you’re part of what I perceive to be a mostly white middle class (I think you have to start off rich to be upper middle class and parenting a special needs kid) blogging audience, I invite you to read on, as I think a lot of the issues are similar to the discrimination that autistics in general are subject to.

First (and perhaps most importantly) blacks and whites in this country generally don’t talk to one another (not exchange pleasantries at work, but really talk). In the absence of a true dialogue, opinions on both sides are mostly informed by stereotypes and the media. In the parlance of autism, blacks and whites just don’t “get” each other.

Think about it. If you’re a white American and reading this, you might have to think a while before agreeing with the statement “The majority of blacks in America have a job, are not on welfare, and don’t live in the ghetto.” You might have to think a bit longer before agreeing with the statement “The majority of blacks in the ghetto are not criminals”. And you might not realize that just under half (about 47%) of blacks own their own home. The media in this country (popular media as well as the news) portray average blacks as unemployed criminals playing rap music extremely loudly and having multiple kids with multiple different single women in the ghetto.

If you are black, consider this. I was in the locker room at the YMCA the other day (I don’t work out nearly as much as I should) and I overheard a couple of black guys in their late twenties talking. One of them was telling the other about how the main purpose of the electoral college is for whites to disenfranchise blacks. I was like “Huh?” The electoral college (for those outside of the US) is to keep smaller rural states from becoming disenfranchised. It was set up when the country was founded (when blacks voting wasn't even a consideration). And if anything, it empowers minority voters in each state, where a minority population can swing all of the electoral college votes of that state. There are many other examples of things that many blacks believe that just aren't so, such as that AIDS is a disease that was purposely introduced into the population by the US government to kill off black citizens.

When it comes to cultural differences, there are certainly many. Consider church services. Think of the difference between a fairly staid mainstream Episcopalian service full of white people, vs. the hand clapping, organ and choir singing found in the African Methodist Episcopal (A.M.E.) Churches often found in African American (AA) communities. AA culture encompasses a wider range of acceptable exuberance for various times in public (besides being in church). But this does not mean that AA parents cannot recognize when behaviors are abnormal in their children.

Now let's move on to how blacks interact with, and view, organized medicine. Blacks have a latent distrust of the medical establishment, stemming at least in part from things like the Tuskegee syphilis experiment, started in 1932, where 400 black men who had syphilis were studied to see the natural course of the disease. The men were not told they had syphilis. Although there was no treatment for syphilis when the study started, by 1947 there was, and antibiotics were withheld from the men in order to continue the study. The study was only stopped in 1972 when public health officials leaked it's existence to the press. Not medicine's finest hour (to say the least), and little wonder that many in the black community still don't believe what doctors tell them, even if they're trying to help them. Also it's no surprise that many AA's avoid doctors as a general rule.

There are a number of factors in the doctor's office that also contribute to poor communication, which leads to delayed diagnosis. First of all, doctors (like all people) relate well to those like themselves. If their patients are middle/upper middle class and white, white physicians are more likely to relate to them on a personal level and take their complaints seriously. When patients are perceived to come from a lower class, than doctors are more likely to assume a paternalistic role in dealing with the patient, rather than a cooperative one. And given the general perception of blacks as a whole, unless Bill Cosby walks in as a patient, the fact that the patient is black has him/her perceived to be of an inferior class by the doctor.

Because blacks, while employed, are more likely to have jobs that don't include medical insurance they are less likely to have a regular physician that they visit. They are more likely to receive episodic care by different providers on each visit in Emergency Rooms.

Complicating matters, at the present time in disadvantaged minority communities seeking education is seen as selling out, and "acting white". After all the hard fought battles for equal education, many in the black community don't seem to value it. This can lead to a delay in seeking help that would lead to increased educational services.

Finally, as pointed out by Sarah in response to Kristina's blog, a lower level of educational services being available for disadvantaged kids may provide less incentive for their parents to seek a diagnosis. I am not sure if this is correct. I know that in the city I live, there are fairly comparable services available to all comers. There may be an assumption in the AA community that since general education services are less then special ed services would also be less, but judging from posters on a local listserve, this isn't so.

So we have a combination of negative societal perceptions of blacks, poor communication between doctors and patients from different cultural backgrounds, a general distrust of the medical system by the AA community, a perception (and perhaps reality in some cases) of lower level of services being provided once a diagnosis is made, and at times less value placed on education by the AA community combining to make it seem nothing short of miraculous that diagnoses are made at all.

The general perception of blacks (especially young black males) as being more likely to be criminal, or at least anti-social, also leads to greater use of diagnoses such as oppositional and defiant disorder (ODD) instead of outbursts being recognized as being part of autism.

For our part, Buddy Boy was first given a series of diagnoses (developmentally delayed, sensory integration disorder, ADHD) before he was diagnosed at age 4 with PDD-NOS. I don't think he necessarily was diagnosed later because of his race. But I do recognize that since his parents are white (and one of them is a physician) that those factors may have totally negated any affect race may have had on his being delayed in diagnosis.

Lastly, I think it's important to recognize such things as the impact of race, since by studying it we may gain some insight into how overt and subtle prejudices can affect how all autistics (as a minority group) are treated.

Dirty Laundry

I almost titled this post "The Good, The Bad, and the Ugly". I figured I'd link to Thursday's post for the "good", Friday's for the "bad", and today's would elucidate the "ugly". But then I thought that might be too tacky.

What I want to talk about today is something I have been thinking about for awhile. It's how hierarchies are developed in the disabled world, especially when it comes to those with autism spectrum disorders.

A side discussion on this started in the comments section on AutismVox, but I thought it deserved a topic of its own.

Developing hierarchies within minority communities is nothing new. Within the African-American community in the US, skin color has served for a long time as one of the primary factors in developing an internal hierarchy within the community. Those who were light skinned were looked upon as more cultured, more civilized, and more likely to succeed. Conferences are held to study how this still goes on today.

When we were looking to adopt, we became acutely aware of adoption's dirty little hierarchy. Basically the main pecking order (for popularity of children) goes like this: white > asian > light skinned hispanic > mixed race african american > black. Native Americans are generally left out of this, as their tribes can (and often do) veto adoptions outside of the Indian Nations. There are also two other factors that dictate "desirability" and popularity. The first is healthy beats disability, and the second is babies beat older kids.

Sometimes the above factors interact to bump a kid up or down over another, but for the most part, skin color rules. No one ever talks about this much in public, but when you're looking to adopt it's communicated to you by the system (agencies, lawyers, and even some other parents thru adoption).

So one of the "interesting" factors that has emerged as we travel this journey with autism is of how hierarchies are formed within the autism community. It would seem that, just like society as a whole, verbal beats non-verbal hands down, in a big way. When people talk about "high functioning" vs. "low functioning", often the only major difference between the two groups is whether the person is verbal or not.

Probably the other big factor that enters into this is whether the individual conforms to societal norms for civility. Thus throwing a tantrum, screaming, yelling, stomping your feet, etc. instantly loses you 50 points on a 100 point scale. Not only is this valued in society as a whole, but even when I've been at functions where there are many autistics, the parents of those kids "acting out" are still looking around furtively, while some other parents seem to have a smug look about them. While the "guilt" of the parent of the kid acting out may be a holdover of how society treats her everyday, where does the smugness of the parent of a kid on the spectrum not acting out at the moment come from? [As a side note, I must confess that when I am in public and there is a NT kid "acting out", I sometimes am guilty of getting a little smug-right or wrong, I consider this different than looking down on "one of our own"].

I think that the only other major factor that enters into the equation of where one sits on the "autism hierarchy" is whether one has complete bowel/bladder control.

Other things that you might think are important don't seem to matter quite as much. Level of academic achievment, ability to play games, and ability to communicate matter, but don't seem to rise to the level of importance as the first three things I've mentioned.

Perhaps it's just innate, that as humans we want to a)place everything into a category, and b)be competitive. But I think we hurt ourselves, our kids, adult autistics, and everyone else in the "autism community" when we set up petty little hierarchies like this. Most of the "normal" world will probably have the same stereotypical view of you/your kid once you say the word autism. Trying to show how you are better than "those other autistics" hurts us all, whether you're talking to someone in the outside world, or someone within the autism community. We'd be much better off trying to change the stereotype that society as a whole has of autism. It's a harder (and slower) process, but in the end will serve us all much better.

Joe is 210 :( :(