Whose Planet Is It Anyway?

Wednesday, April 02, 2008

Being Aware of Differences

This post is a response to the invitation on "Momologue" for parents, autistic adults, and other interested folks to blog about autism awareness in April to improve our collective understanding of how people experience the world in different ways.

To describe my extended family briefly, we could easily be the poster family for
Wigler's hypothesis that autism genes are dominant in males but not in females. Every male in both my mother's family and my father's family has been autistic for at least three generations. (Although it probably goes back much farther than that, I don't know enough about the previous generations to describe them.) I am the only autistic woman.

Some of the female members of my family seem to have their own genetically determined syndrome, to use the term in a neutral sense to denote a collection of related traits. They are chatty, dislike spending time alone, get bored very easily, and have a tendency to become obsessed with popular social activities such as shopping and women's sports.

Although it can be a challenge to raise children who have such significant behavioral differences, my family always has recognized the importance of setting reasonable expectations and not allowing anyone to use their neurological condition as an excuse for irresponsibility. Homework always meant hanging up the phone and doing all the assignments, no matter how much a girl might whine that she couldn't possibly focus on her schoolbooks for that long and would surely die of boredom if she had to wait until tomorrow to talk with her friends.

A realistic understanding of neurological variation has to include an acknowledgment that not everything can always be positive and that, on occasion, people do suffer unpleasant feelings of social isolation and anxiety as a result of their neurology. For instance, while the autistic family members are all enjoying a multiplayer empire-building game using every computer in the house, a young female of a different temperament may become extremely distraught because she cannot check her classmates' Facebook and MySpace pages for updates on next weekend's party. She is likely to become convinced, in her own mind, that she is totally doomed to a life of permanent social exclusion if she can't get her brother off the computer this instant. Other family members need to be aware of her cognitive differences and to realize that such fears, however irrational they may appear to others, seem very real to her at the time.

Families also need to recognize that troubling feelings of inadequacy and self-doubt can result from a young person's inability to do the same things that others can do, and that occasional tantrums and other expressions of frustration may occur. When a teenager sees her autistic brother getting high marks in honors classes and winning prizes in science competitions, while she struggles with the basic high school curriculum, she may need reassurance that she is just as smart and capable in her own way. Parents should keep in mind that her difficulties with time management, organization, and executive functioning are not necessarily permanent and that, as she matures, she may no longer feel a strong compulsion to spend most of her time hanging out with her friends at the mall when she ought to be studying.

Indeed, although it can sometimes be difficult to understand and appreciate the extent of others' cognitive differences, we should not lose sight of the fact that we all have significant potential for worthwhile accomplishments of one sort or another. There can be a productive niche for everyone in our complex and diverse world. Let us all reflect on what we can do to bring about this vision of a more enlightened and accepting future as we celebrate (what ought to be) World Neurodiversity Day.

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12 Comments:

  • Great post!

    Thanks so much for participating in blogging for autism awareness in April.

    I've added your blog to the blogroll.

    ~g

    By Blogger Genevieve Hinson, at 10:36 AM  

  • Do you share an RSS feed link? I'm looking because I want to add your blog posts to my feedreader but don't see one.

    By Blogger Genevieve Hinson, at 10:46 AM  

  • Genevieve: There doesn't seem to be anything linked in the page body, but there is an RSS link in the source which shows up in newer browsers:

    http://autisticbfh.blogspot.com/feeds/posts/default?alt=rss

    By Blogger codeman38, at 11:48 AM  

  • That's almost the opposite of my extended family, where it seems to be mostly the women who are autistic (for generations), though some of the men are too. Far more women though.

    By Anonymous Norah, at 12:39 PM  

  • Truly excellent post! With writing like this, so clearly pointing out the neutrality of differences, I may make it through this month of "awareness" after all. Thanks!

    By Blogger Bev, at 3:06 PM  

  • I am extremely thankful that in my childhood my parents have been very understanding (for the most part; no one's perfect) of our differences. Of the three kids in the house growing up, I was usually the quickest and the slowest at school (still that way, though my sisters aren't in high school anymore).

    So, one day my parents would be reassuring my older sibling that I'm not better than her for outperforming her academically, while the next (or even the same) day they'll be turned around reassuring me not to be upset because I have trouble understanding (seemingly) simple instructions or getting ready in the morning.

    By Blogger geosaru, at 1:08 AM  

  • I have AS, on a very minimal scale. For most of my life, it was like I was predetermined to be a science major in college, but then a series of events changed my life, heart and mind. I read the David Pelzer Books, the first one really hit me hard, then after hearing about the death of 7-year-old Nixzmary Brown, I had discovered my true purpose in life. It is my passion to prevent child abuse and help those who have been abused. I was only a Freshman in College when it happened, going into my secomd semester, so I immediately changed my major and courses for the spring. As I was doing this, I kept hearing from my family, "You Cannot Handle this Job", "It's a waste of time and money". I'm now a Junior in College, I've earned my Associate's Degree in Psych, and I'm so close to getting into the School of Social Work at my college. Everyone I know has a different opinion about it, but I feel most unsupported by my family. They are practically SHAMING me into going back into the science field. To be honest, it would be nice if I had my own family's support, but I really don't care what they want me to do with my life, or what they think I can and can't handle. It's MY life, and I'm going for the career I want. Does anyone think I'm crazy or just pipe dreaming?

    By Anonymous Simba222, at 12:17 AM  

  • simba222 -- I think you're the one best suited to decide what career you can handle. It is true that many child protective workers get burned out after a while because it's such a stressful job, but even if that should happen to you, it wouldn't mean you wasted your time becoming a social worker. You could use that experience to move on to another related job, such as working for a nonprofit organization developing programs to prevent child abuse, or something like that.

    Best wishes to you.

    By Blogger abfh, at 2:58 PM  

  • abfh, I think Simba's family would know Simba best, and I think your advice is very irresponsible. I'm sure they have very specific reasons why they are not supporting this career choice, and for you to tell Simba to go his/her own way and essentially ignore his/her family's is very poor advice!

    Simba, is AS Asperger's Syndrome? And if it is, can you tell me what you mean when you say you have AS on a minimal scale? I have no idea what that means. If AS does mean Asperger's Syndrome, people with Asperger's have great difficulty drawing inferences, reading body language, making logical conclusions, understanding different social settings, things like that. These are critical skills for being an effective social worker. If you have these problems associated with AS, and you wrongfully accuse someone of child abuse, or worse, you don't see the signs of abuse because of your inabilty to read body language or draw inferences or conclusions, the damage can be catastrophic for the people you are counseling. And you do know there's way more to being a social worker than just dealing with child abuse cases, right? I ask this because many Asperger's people are one tracked minded and don't have the ability to see the entire picture, just the part they want to see.

    By Blogger AutismDirector519, at 12:17 PM  

  • AutismDirector519: I did not advise Simba to ignore his/her family's advice. I wrote that the family has raised a valid point about how difficult it is to handle child protective work, but that ultimately, Simba is the one who has to make a career decision and live with the consequences.

    There is a person in my extended family (not autistic) who allowed her father to choose a career for her. She ended up being an unhappy job-hopper for many years. In general, I don't think parents should choose careers for their children, although they certainly can and should offer constructive opinions.

    As for difficulties in reading body language and drawing inferences and conclusions from social behavior, that problem goes both ways. There have been many cases of autistic children being wrongly removed from their parents because social workers who were unfamiliar with typical autistic body language and behavior mistakenly concluded that they had been abused. In my view, hiring social workers who are autistic brings valuable diversity to the profession, just as hiring social workers of different racial and ethnic groups promotes better understanding of minority families.

    By Blogger abfh, at 1:34 PM  

  • AutismDirector, FYI I'm only going for a BASW and then if I even go to Grad School, I'll get a master's degree in something else, and I've decided not to go into social work per se, but rather get a job doing something else similar, but I've already gotten into the Undergrad program for Social Work. As far as "minimal scale" goes, I would think that you of all people (if Autism Director means what I think it does) would know about the "Autistic Spectrum". Just because someone has Autism, or AS, does NOT mean that they can hardly do jack s--t. I CAN read body language, more than some people think. I work with kids every day, and even if they're not crying, I know when they're hurt or upset. I take my paid and volunteer jobs very seriously, and I know what my bounds are.
    You might personally think I'm crazy, but please DON'T tell me or others what I know and don't know, I KNOW MY LIMITS!!!!!

    By Anonymous Simba222, at 11:17 PM  

  • I apologize for expressing hostility in that last post.


    Here are the facts:
    -I have Asperger Syndrome
    -I am a 22 year old guy
    -I am in my last year of undergrad college doing an internship.
    -I had a strong interest in many natural sciences as a younger child.
    -I am an Eagle Scout.
    -I was frequently bullied by others in middle school.
    -I started my first year of college as a biology major.
    -----HOWEVER-----

    I am NOT a Rocket Scientist and
    I am NOT a Zookeeper;
    I am a Social Worker.
    I don't technically have an established career or license just yet, but I have an internship and I'm getting real close. Since my first year of college I have experienced many emotional changes, and I realized that my place in society is to give direct help to those who cannot help themselves. It is my job in society to prevent young and innocent lives from being lost and destroyed. I have volunteered and worked for several different afterschool programs, helping agencies, and day camps. My internship is with with child services in my home state, and even though so far it's been emotionally hardcore, I have no intentions of turning back.
    My point is there may be some genetics involved in this disorder, and there may be some common patterns, but I really believe that people with Asperger's syndrome and other forms of autism on the high functioning end of the Autistic Spectrum actually CAN do things that many people believe they can't or deliberately don't do. Don't get me wrong, my own family, as well as many close others were shaming me into going back to the science field, and it made me feel very useless, but I simply refused to go back. They have long given up on their quest to get me "back on track" (so to speak) because they finally came to realize that their resistance and my own deficits together were just no match for my passion.

    I'm not advising those out there to enter this field or not enter it, but if you feel passionate about a cause of some kind, there has got to be a way you can fight for it. Though I wouldn't suggest discussing religion in your job, God really does work in mysterious ways. LOL

    By Anonymous simba222, at 10:16 PM  

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