Asperger’s syndrome: How a name brought harmony to my sister's life
Harmony. If the baby was a girl, that’s what we’d call her.
This was back in the early '70s, so everyone probably thought the name was a hippie thing. Really, though, it was just good luck—because my sister did grow up and into a Harmony. A peacemaker. A lover of order. And, like her name, a little different from everyone else.
When we were kids, we never heard about Asperger’s syndrome or the autism spectrum. The only word we had back then was “different.” That’s how I’d explain my sister to people who’d never met her. And if they asked, “Different how?” I’d start with, “She laughs a lot.”
It is still her defining characteristic. My sister totally gets the joke—any joke, every nuance—and her laugh can fill large spaces. Perhaps you’re thinking you know someone like that. You don’t. She’s different.
Blonde jokes. Who’s on First? Barbra Streisand in What’s Up Doc? Jeff Foxworthy. The Church Lady. And every single Mel Brooks movie. You think these things have made you laugh? Maybe they have. But not like they’ve made my sister laugh. She gets as much joy from a joke the 4,000th time as she did the first.
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Believe me, she is as delightful as she sounds. But when we were kids, she was teased a lot. Often, she came home worried or crying. Many days, she didn’t want to go to school. She used to tell her tormentors that, if they didn’t leave her alone, her big sister would beat them up. I weighed a menacing 75 pounds at the time.
The word “Asperger’s” would have been very handy back then, I think. More helpful than a skinny older sister. Way better than the flimsy and useless “different.” An explanation. Solid fact.
Asperger’s syndrome: An autism spectrum disorder. People who have it show difficulties in social interaction, as well as repetitive patterns of behavior.
My sister was an adult when she heard the term for the first time, and on the day she did, a chasm filled.
Even now, all these years later, I snarl when I think of the bullies who bothered my sister. I remember their names and faces, and I think, I’m bigger now. I could take them. But true to her name, Harmony doesn’t hold a grudge. She’s just glad to know.
Why she can memorize without effort. Why she organizes her things just so. Why she dislikes the chaos of children but loves being an aunt. Why she can complete any jigsaw puzzle, no matter how many pieces. And, why she always laughs at the joke.
There’s much more information about the autism spectrum today than when we were growing up; of course, my sister has it all memorized. I think she feels like I do: It would have been a luxury to know then what we know now. As a kid, she’d have been relieved to learn that she wasn’t the only, only one. And that her difference had a name. Asperger’s.
I think she would have carried it like a shield.
Heather Heath Chapman is a writer and a mother of two. You can reach her at heatherchapman1@me.com.
Comments
Amy Lesemann
Sat, Jan 1, 2011 : 2:38 p.m.
@Robyn in particular.... My older daughter is on the spectrum, and her diagnosis has changed from high functioning autism, to asperger's, to pervasive developmental delay. Currently p.d.d. is her diagnosis, which means in some ways she functions in a manner that is intellectually just fine, but emotionally somewhat younger. It's hard to get longer term projects done, social issues occur occasionally, and people are still occasionally a mystery to her. Sometimes, given the choice, she'd rather hang out with some animals than people. Now for politically incorrect observation. Being non typical in this fashion is a royal pain in the ass. It is a disability. It makes making friends and connections difficult. It makes functioning in a classroom difficult, especially a high school discussion class. Asperger's, which is on the autism spectrum, along with pervasive developmental delay, IS a disability, whether we choose to admit this or not. However, unlike some disabilities, it often comes with some positive aspects, which include a very different perspective on life. Kids with Asperger's often focus intently on a topic and absorb the information with a focus that, when they learn to control it in the presence of others, can be of service to themselve, and to the world at large. Unless they're specifically to be aware of the needs of others in a group, however, they tend to dominate discussions with endless recitations of details, boring their peers and alienating most of the folks in the room. It's a delicate dance that we do, in conversations, and kids w/asperger's are bulls in a china shop. THIS IS A DISABILITY. No two ways about it. We've been living with this for years, and I do not want to hear any fuzzy wuzzy, put on your happy face kind of Ann Arbor b.s. about it. If I sound annoyed, I guess I am, because usually the folks who deny that it's a disability are either Aspies who are so totally far over on the spectrum that they can't even see average, or people who work with Aspies and like to be p.c. about it. People like my daughter suffer, because they KNOW they're neurologically atypical, they would very much like to be clued in on the social mores, and feel tremendous frustration with themselves and the universe at large. And this is after years of very productive therapy, and anti-anxiety meds that've really helped her a lot. As Temple Grandin mentioned in her lecture - not being a horrible contorted bundle of fear and nerves goes a long way to helping you function in general, and allow the behavioral therapy to work. They can learn and create small tricks and methods to help themselves function. When I complimented my daughter on looking people in the eye when she talked, she smiled, and said, "I don't do that. I can't. But I can look at a small dot right above your eyebrows. You just THINK I'm looking in your eyes. Works every time." How clever is that? Her life is full of little survival tricks. I don't think most of us have to think that way. We just...live. There. Sorry if I climbed up on a soapbox, but...it's been a hard row to hoe. Daughter now plans to be a marine biologist, and will no doubt excel tremendously. Aspects of her neurological makeup are definitely helpful here. But given a choice? She'd rather be neurologically typical. (and just to be sure...I went into the other room, and asked her these very questions.)
judy
Mon, Jun 14, 2010 : 3:44 p.m.
This is a great story of a little girl who was different, I understand this story very well,my son also has Asperger's -he was made fun up and didn't like to go to school,he went through school only knowing that he was different,we were told 4 months before he gradutated High School that he had this disorder.I wish that I had known sooner only to help him with his people skills,other than that he was a perfect kid,he was the happiest when he walked down to get his diploma -ear to ear smile knowing that he didn't ever have to go back to school. Now that he is 27,he is working at a job that he likes and there are people to help him if he gets off track,Work Skills has help my son be happy and feel like he is accomplishing a job and to make his own money.There should be more funding for younger kids as well as adults to help them go through the understanding process of their disability.Unfortunitly there are not -and more kids as well as adults are misdigaionos.
Anonymous Due to Bigotry
Mon, Jun 14, 2010 : 1:25 p.m.
@Ms. D: I'm glad you're daughter was finally diagnosed before getting too far out of high school. Some books that might help her and others: The Unwritten Rules Of Social Relationships by Temple Grandin http://www.aadl.org/catalog/record/1322006 The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations by Brenda Smith Myles http://www.aadl.org/catalog/record/1305560 This one is more useful with younger children and would probably help more with your students. Pretending To Be Normal : Living With Asperger's Syndrome by Willey, Liane Holliday. http://www.aadl.org/catalog/record/1159060 This last book is particularly relevant for you and your daughter as it largely contains an autobiographical account by a woman with Aspergers who talks about much of the stuff I mentioned in the previous post. Also check out the HBO biographical drama about Temple Grandin http://www.hbo.com/movies/temple-grandin/index.html
bbb3
Sat, Jun 12, 2010 : 6:12 p.m.
Ah Harmony Heath....now that is a name, face, and spirit that fills me with joy whenever i see the name or the woman it belongs to. Harmony is a joyful,loving,caring,friend that i treasure. She has brought me joy in times of sorrow and has made me laugh when i needed that laugh the most. Her zest for life is so much larger than mine and it inspires me on a regular basis to enjoy all that i have and all those that i share life with. Great article Ms. Heather and Happy Birthday to Ms. Harmony. Love to all...BBB3
DougEFresh
Sat, Jun 12, 2010 : 12:05 p.m.
Great story. There are still many adults living undiagnosed with AS. It took me having a meltdown at work to get diagnosed. Even though I was fired and denied unemployment benefits, it was worth it in understanding myself. The Asperger diagnosis explained why -although more than intelligent enough- I was unable to graduate from U of M and have had such a hard time romantically. Now U of M has an office to help students on the autism spectrum. A follow up article should include how people with AS fall through the cracks trying to navigate social services as we are usually too functional to qualify for disability benefits and not functional enough to get a job. Or, at least, we are unable to obtain positions on a level with our intellect.
Technojunkie
Sat, Jun 12, 2010 : 11:39 a.m.
I think I'd have adapted much sooner if I had known what I am. OTOH that would have given the psychologists an opportunity to really mess me up. Tough call. "Meltdowns", etc are probably reactions to the toxic synthetic ingredients put in nearly all processed foods. I am considerably more serene since I found that out. People with ASDs are more likely than neurotypicals to have food intolerances. GI symptoms are another big clue here but not required. Sally Fallon's book "Nourishing Traditions" is a good place to start for a general guide to a healthy, brain-friendly diet. The Feingold Association can help if you want to really dig into the subject of food intolerances and the resulting damage.
robyn
Sat, Jun 12, 2010 : 10:37 a.m.
@ KRC: I'm surprised that the school has not brought up the issue. Hopefully it is something they will look at in the next year or so. I know it bothers me to see kids who are obviously on the spectrum (to me - I see it because I'm aware of behaviors and characteristics) and the parents refuse to even entertain the idea of something being 'wrong' with their child. I honestly don't look at it as something being 'wrong' - I see it as being different, even unique, quite special in many aspects. But parents who don't have it look at their kids as little extentions of themselves and have a hard time admitting that their child really isn't like them. Especially parents that are very socially adept and bond with others naturally. They tend to look at how their child is different as some sort of failure on their own part and at the same time with a lot of fear for their child. Face it - kids who are different are pushed out of the crowd, bullying has taken on a whole new face since we were kids. I doubt ANY parent wants their child to stand out in a way that makes them a target; with a child who is obviously different there is a far higher possibility that he/she will be a target. I would also have to think that being a boy would make this even harder on the parents and the child. Boys are expected to be tough and strong and fight back. Even more so in a family where 'men are men'... Maybe you can do some reading, if you're close enough to his Mom you may be able to bring it up to her. But do it in a way that highlights the good aspects of his personality. A lot of these kids are very intelligent - they can be very focused on certain things, but that focus can be used to teach them. Rather than looking at ASD as a 'DIS-ability' - it can be seen as more ability in some areas and less in others. Having a kid with ASD is not a bad thing, it's just different. My email is hargensteel1 at aol.com if you want to contact me. I'd be more than happy to talk to you.
krc
Sat, Jun 12, 2010 : 9:55 a.m.
Robyn, This little boy's family - not necessarily Mom and Dad but the Grandparents and all the Aunts and Uncles on Dad's side are very loving but...I just don't know how to say this except just to say it, are all "Be a Man!" types. They are very involved in eachother's lives, get together every week to watch some game or another and hoot and holler with every play. They love the little guy but refuse to even think that there may be a problem. They live on the other side of the state so I only see them a couple of times a year. How can I convince them to have him tested? I would offer to pay, but am broke.
julie312
Sat, Jun 12, 2010 : 9:05 a.m.
Vitamin D 3 deficiency is endemic in this country, and is related to some the manifestation of affective disorders, not the least of which is depression and autism. Go to the website www.vitamindcouncil@vitamindcouncil.org, and do some reading.Then start supplementing your loved one with Vitamin D 3. For kids, it is 1000 IU of D3 per every 25 lbs of body weight, daily.Stop giving them Vitamin A, in the form of multivitamins, starting today. Vitamin A in kids' multivitamins is synthetic, and opposes the benefits of Vitamin D3. For adults, the dose is 5000 IU of Vitamin D3 a day. Have your physician measure the levels after 3 months of supplementation,and then periodically. Get ready to see some elevation in quality of life, and resistance to infection,among the many benefits of Vitamin D. Your doctor will need to read up on Vitamin D3, too, in order to have an open mind about the updated daily recommendations for intake.
Barb Roether
Sat, Jun 12, 2010 : 8:49 a.m.
Heather, thanks again for another wonderful, insightful article. I think your writing is awesome and so real. It is so good to share these life experiences as we all need to learn and understand. I continue to look forward to your posts.
Ann Arbor mom
Sat, Jun 12, 2010 : 7:43 a.m.
What a lovely, lovely essay. And a beautiful tribute to your sister, with whom you clearly share a special bond. You both are so fortunate to have each other.
Jamie
Sat, Jun 12, 2010 : 6:34 a.m.
This is a nice story, I know someone that has Asperger's. So I find this kind of stuff interesting.
tinkerbell
Fri, Jun 11, 2010 : 11:05 p.m.
I recommend the book by Jodi Picoult called House Rules
robyn
Fri, Jun 11, 2010 : 7:54 p.m.
@ Ikelliot: You are right about many doctors 'blowing it off' because there is no real 'cure' for it. I remember when I was told my daughter was ASD, the first thing I said was "Where do we go from here?" Just looked at me and said, "No where, she'll always be like this." UUUmmm excuse me, not what I wanted to hear. True there is no cure, but KNOWING what causes certain behaviors and learning to live with/or around them can help you live a fairly normal (whatever normal is) and productive life. My daughter has learned to be aware of her 'obsessive' behaviors and her 'stimming' and she doesn't do it in front of others. She is also becoming more interested in learning 'social cues' and she's become quite the observer of her peers. Oddly enough - she actually has a couple of friends - real friends- and they're not all ASD. I believe my girl copes so well because she has always been aware of her ASD and we have always been very supportive of her. Her schools have been fantastic too. When we found out she was an Aspie I searched for any information I could find - back then there wasn't a lot to be found. What I did find was really depressing. The thing that scared me the most was reading that undiagnosed teens had a higher rate of suicide than NT's. There is a really cool website that I belong to, it's called Wrong Planet Forums. There are a lot of really good people there, a lot of great insight and people who deal with ASD everyday. I have found it quite helpful. It probably helps that I fall in the spectrum also and that my Dad is diagnosed ASD (he had his PhD and led a very purposful and fulfilled life). It's far easier to understand something that you have learned to cope with to some extent.
lkelliot
Fri, Jun 11, 2010 : 7:18 p.m.
Hello everyone, I am a 35 year old black male who has Asperger's syndrome. I did not know I had it until recently(a few months ago). It has negatively affected every aspect of my life from my schoolwork to my marriage. I have experienced all of the social issues that this article talked about especially when I was younger. I am about to receive my MBA but because of my lack of social understanding and obsessive behavior attributed to my asperger's, I have not been able to build my career correctly like a neurotypical person generally does. I do things in patterns and miss many social cues that neurotypical people automatically pick up on. It is discouraging sometimes but it is what it is so I deal with the best way(s) I can. I was seeing a therapist about it but that option ended so I have to start seeing someone else about it. One note, Asperger's syndrome was not recognized by the American Psychological Association as a DSM-IV psychological disorder until 1994 which is why many aspies like me who were born before the late 1970s/early 1980s(in my case 1974)were not diagnosed with this psychological disorder until later in life if at all. I just want to bring up one more point. From the research I have done, many psychologists choose not to train themselves in this disorder because they are not interested in it or because they feel that they can not do anything about it. Thus, there are not many therapists around who specialize in treating Asperger's syndrome. I would like to commend the sister who talks about her sister with Asperger's syndrome. This openness about this disorder inspired me to write about my experiences with this disorder. Thank you for the openness. It helps. It really does.
Ms. D
Fri, Jun 11, 2010 : 4:14 p.m.
I have a daughter that is 19 and was only diagnosed 6 months ago. She'll be twenty next month. I am a teacher and up until a year ago had never heard of aspergers. When I picked up my accommodation sheets for my students with learning disabilities I was told that I had 2 students with aspergers. Having never heard of it I started doing some research so I would know how to work with them. Needless to say, every thing I read sounded just like my daughter. Finally I knew that there was a possibility that there was really an organic problem to describe her difficulties. I took her to a psychiatrist and as soon as he had finished taking her history he immediately said it sounds like aspergers. She has now been on medication for 8 months, and while she still has meltdowns and social issues, living with her is 100% better. Her grandmother even commented a month after she started the meds that she had actually looked her in the eye and had a "normal" conversation.
Anonymous Due to Bigotry
Fri, Jun 11, 2010 : 3:19 p.m.
People should be aware that with autistic girls social symptoms can be "masked" by imitating behavior. For example, neurotypical children will develop the concept of "pretend play" at a very early age while the autistic ones won't. Girls, feeling more pressure to fit in for whatever reason, are much more likely to "fake" pretend play by imitating the behavior of other children engaged in pretend play without really understanding what's going on. Autistic girls are also much more likely to continue symptom-masking behavior into high school. For example, they will analyze social situations systematically and imitate whatever superficial appearances or behaviors adolescents generally recognize as signs of "fitting in" without just doing it "automatically" like neurotypical kids. From what I've been able to determine though it seems that once they get to college the rules become too complex to systemize and they start having problems. At that point "fitting in" becomes a more difficult abstract phenomenon rather than the superficial one that can be much more easily systematically observed in adolescence. Therefore it's really not surprising to find autistic girls who have made it through high school without being properly diagnosed. Often what happens is that partial recogniztion of the symptoms results in false diagnoses like obsessive-compulsive disorder or some sort of attention deficit. Schizoid Personality is also a possible "misdiagnosis" though it may actually be a common co-morbid condition. Depression, as you might guess, is also a common condition that is comorbid with autistic spectrum disorders.
robyn
Fri, Jun 11, 2010 : 10:42 a.m.
@ KRC: ASD does run in families. It would not be surprising to find that other members of the family have some degree of ASD. It runs through my Dad's side of the family. I think the term they used for it was 'eccentric' (okay - some people say odd or even nutty), but it is pretty interesting to look back and figure out who fits the 'profile'. Encourage your nephew's parents to have him tested. KNOWING why a child thinks differently and acts differently helps you parent them and teach them in a way that works for them. Some parents are 'afraid' of a diagnosis - like it's proff that they did something wrong and caused their child to have a mental illness. ASD is NOT a mental illness - it is a difference in how the brain is 'wired' which makes these kids think, learn and perceive things differently than how a regular person does. Many times these kids are exceptionally bright - but they learn differently than other kids do. It's like when people thought kids with dyslexia were 'dumb' - they found that those kids' interpreted what they saw differently than others. Kids with dyslexia are taught to 'decode' what they see and recode it into what we see. It's more complex - but not a whole lot different for ASD kids. NOT acknowledging the child is different will only lead to frustration - on the parents part and on the child. It can also lead to depression and self esteem issues.
robyn
Fri, Jun 11, 2010 : 10:28 a.m.
Add to correct: She was diagnosed just before she turned 4. She was referred to a specialist when she was in Pre-k when she was 3. @ Wolverine81: Socialization with her peers is probably the most difficult thing to deal with - my daughter is very comfortable with adults but she just doesn't 'get' kids her own age. She is gettng better at it tho.
robyn
Fri, Jun 11, 2010 : 10:08 a.m.
Thanks. I have a 13 year old who is an Aspie. We knew she was different from the start, she was diagnosed just before she turned 3. While there have been moments that have been 'difficult' - I would not trade my daughter or her uniqueness for the world. She truly marches to the beat of her own drummer and does so exceptionally. I really do believe that KNOWING why she is the way she is has helped us and helped her - in both accepting her differences and learning to work them to her advantage. You're lucky to have a sister like Harmony, and she's lucky to have a sister like you.
81wolverine
Fri, Jun 11, 2010 : 10:07 a.m.
Very nice story. My older daughter has Asperger's and it has been a tremendously limiting condition for her since before turning into a teenager. Despite being extremely smart and talented, the challenges in socializing with other people has been extremely painful and difficult for her. She needed to attend a smaller, private school which enabled her to finish high school. Despite trying many things, my wife and I are still searching for answers on how to help her lead an active and happier life. Modern medicine has no answers for this condition.
whyohwhy
Fri, Jun 11, 2010 : 7:34 a.m.
Great story! Every 4th grade teacher should read it to their class today!
krc
Fri, Jun 11, 2010 : 7:14 a.m.
Lovely piece! I have a little nephew-in-law who I suspect has Asperger's but his parents and extended family vehemently deny it. He had such trouble in KG that he is going to repeat, so, his teacher says, he can be "ahead" of the new group. He's been odd since he was tiny. I wish his parents would have him looked at. His grandfather is odd too.