Living with Asperger's syndrome
Tuesday, October 27, 2009; 1:00 PM
Tim Page, author of "Parallel Play: Growing Up with Undiagnosed Asperger's" and a Pulitzer Prize winning music critic, will discuss the effects of Asperger's syndrome on his life and coping mechanisms he uses to treat it.
He was online Tuesday, October 27, at 1 p.m. ET to take questions.
Tim Page: Good afternoon -- and what a pleasure it is to be back online at the Washington Post. I spent 12 years at this newspaper and they were far and away the most productive years of my life (so far). I send greetings to all the readers who wrote me to agree or disagree with my music reviews -- sometimes, upon reflection, I disagreed with them myself, but that's the deadline business for you -- and I am thinking of Washington and my home in Baltimore as I write you today from Los Angeles.
I'm liking the University of Southern California a lot. At this stage in the game, I'm much more interested in what my students have to say about an event than I am in attending it myself. I DO plan to hear Gustavo Dudamel, and soon, but after writing some 3000 or more reviews in the course of a 30-year career, it is rather nice not to be going to a concert every night.
So I've written this memoir of my childhood, called "Parallel Play," and it touches on a lot of subjects, including Asperger's Syndrome. I was diagnosed with this autistic spectrum disorder in 2000, just after I crashed and burned as an administrator at the Saint Louis Symphony. I had gotten rather cocky in the late 1990s and really thought I could handle a job that would involve working closely with hundreds of people every day would be the natural next step after criticism. I couldn't and I returned to Washington in terrible shape.
The diagnosis was helpful in a lot of ways -- mostly in explaining some of the things that had proved difficult, sometimes even impossible, for most of my life. And I didn't exactly "give in" to the condition, but being aware that I had it helped me make smarter choices. It also helped to explain a weird childhood that included an easy mastery of all sorts of data -- the dates of every president and president's wife, which I could recite forwards or backwards upon request, an encyclopedic knowledge of silent films and old recordings -- yet also included an absolute inability to concentrate on subjects that didn't interest me. It was also enormously difficult for me to make friends, and overstimulation would send me into fairly frightening meltdowns.
These got better as I grew up and went around the block a few hundred times. For me, at least, Asperger's Syndrome was most debilitating during my youth. And yet there is no doubt that I am still affected by it today. I sometimes feel that I have spent my life in a state of parallel play (hence the title) -- alongside but disconnected from most of my fellow human beings. And it gets lonely sometimes.
Well it's now 1:00 -- 10:00 out here -- and I'm going to open the online floor to your questions.
P: Are there wide ranges in Asperger's syndrome symptoms, or are they pretty narrow? What are the symptoms that define one as having Asperger's syndrome as opposed to other syndromes?
Tim Page: I'm really not trying to cop out here, but I often say that I don't actually know a great deal about Asperger's Syndrome: I just happen to have it. For good psychological information, I would recommend Tony Attwood's wonderful "The Complete Guide to Asperger's Syndrome." He is also online at tonyattwood.com.au. Another good site is aspergerssyndrome.com. I'm not sure what the address for Oasis is but if you type Oasis and Asperger into your search engine you'll get it pretty fast.
I also admire the radical new autism activists, such as Aspies for Freedom, who believe that autism and Asperger's should be considered "differences" rather than afflictions. I have some mixed feelings about this -- although I do think some of the things I ended up doing were enabled by my Asperger's Syndrome, I still wouldn't wish it on anybody, for I've felt pretty unhappy a lot of my life. Still, I love their punchy, radical spirit -- and who knows? Perhaps the depression and anxiety that seem to accompany most cases of AS wouldn't be there if we didn't always feel so strange.
West River, Md.: Our 21-year-old son has Asperger's and only one friend, who is normal. They will spend time together for two or three days per month, then Sam is on his own. He does not particularly like most of the Asperger guys in his weekly group, but he is two to three years older than all of them. Is not having a good friend (or friends) what he has to expect throughout life, or can we help him to find people who will care about him as a fun and quirky man?
Tim Page: I have had a lot of wonderful friends in my life, but -- especially when I was younger -- they took a long time to make. As for getting along with other AS people, it depends on what fascinates you. If you are really into records and the other Aspie (as we call ourselves) is into vacuum cleaners, it is likely that two mutual monologues will result. But I always loved talking about old records, true crime and other things like that with a fellow devotee.
I wish Sam well. This is no picnic. But sometimes it can lead to some good things.
Berkeley, Calif.: I have a grown son with Asperger's. It is interesting to see how he has overcome many of his disabilities. He, too, has a mad skill, one in communicating with machines as a computer engineer. Since he was diagnosed, we made accommodations at home that still has him firmly attached emotionally. My fervent hope is that he can find a woman who is loving and understanding because his fondest wish is to start a family of his own. It also makes me worry that his disability will hinder his fatherly skills. Do you have anything to offer on this?
Tim Page: I'm afraid I was a remote husband and an even more remote father. I've gotten a lot better at it -- at least, at the latter role -- but it has taken a while. I love my children enormously but it was difficult for me to show it, especially when they were younger. Things are much better now: we can talk, laugh and joke together, watch movies, and so on.
Yes, a wonderful woman would be an enormous blessing. Many, probably most, of my best friends are women, and they are patient and loving with me. But an understanding of the condition is essential.
Elkridge, Md.: Hi, Tim. Do you have a list of symptoms for females with Asperger's? I've read that the condition presents differently in males than it does in females. Hope that you or someone in the audience can help me with this. Thanks. Cheryl
Tim Page: Hi. Asperger's is diagnosed about 10 times as often in men as in women, and there is much discussion about whether it is generally a male trait. My own guess is that the condition does indeed present differently, and that there are probably a much greater number of Aspie women than now recognized. But here again I would suggest meeting with a doctor.
There may be -- SHOULD be -- a book on women and Asperger's out there. I hope there is, or that one is on the way.
Bethesda, Md.: My son has high-functioning Asperger's and is similiar to you. One of his talents is music: perfect pitch, sight-reading, theory, and ability to learn an instrument quickly. He also perseverates on some other things as well. He is 15 and has difficulty in school -- particularly English class -- but he goes to a competitive HS and also has problems with organization, completing homework and juggling assignments. Did you have these types of issues, and what do you recommend to help him?
Tim Page: Oh, I had a lot of those problems -- still do. Be as gentle with him as you can be, while explaining to him why joining the world (as much as he can) is a good idea. I never understood why other people expected certain behavior until it was "explained" to me by reading Emily Post's "Etiquette." But don't expect "well-roundedness" from an Aspie: we're just not built that way. We are good at things or we are mostly oblivious and there are bridges that are hard to build.
Arlington, Va.: I am posting early because I won't be around during the program. Mr. Page, I've read that people with Asperger's syndrome have a tendency to "melt down." Do you think that had anything to do with your blow-up at Marion Barry a few years ago? Terry Gross asked you this question on "Fresh Air" and you really didn't answer her.
Tim Page: Sometimes I fear that I will be best remembered for blowing up at an obnoxious flack for Marion Barry who e-mailed me at the wrong time, after previously calling me all sorts of words when I asked to be taken off his mailing list!
I regret my response. It was absolutely out of line, regardless of what anybody thinks of Marion Barry, and I never should have replied on Post e-mail. That said, the Post was very kind to me, and supportive, as I was going through a terrible time.
Still, I never excuse my bad behavior by shouting "Asperger's! Aspergers'!" and I'm not going to start now. I sunk to a level that was almost as low as Barry's flack, and I regret it. I will allow that it struck me as strange that they publicized it so thoroughly and tried to make me out a racist, as there was nothing remotely racist in what I wrote. If I'd been busted for crack, I don't think I'd want it brought up again. But they got their headlines for the day -- and I was embarrassed.
Silver Spring, Md.: Is the book available now?
Tim Page: Yes, the book was published in September. I hope you will enjoy it.
Washington, DC: How are you managing in Southern California without driving? We miss you in DC.
Tim Page: I'm rather proud of my ability to negotiate mass transit out here. It's really not a bad system -- we have a terrific subway that I will be using in about an hour. But I very deliberately selected areas that permit such luxury. I live in Hollywood and I work south of Downtown, which isn't that big a deal. If I lived in Santa Monica, it would be a lot tougher. Here I take a bus, a subway and I'm there.
I put aside a couple of hundred a week for cabs. It's still cheaper than owning a car.
Annapolis, Md.: How did you feel as a young teen when hormones kicked in? Background: My grandson was diagnosed on the spectrum when he was 6, and I realized with relief similar challenges with his father, my son, and many direct relatives on up. Just classic! My son and his wife (both professors of course!) have used good sense and sensitivity in telling him a few years ago about it, and he's now, at age 15, taking advantage of what he knows about himself by taking part in high school musicals (lovely voice and good mimic). At 6 feet, I don't think he'll be bullied, but I worry he might be hurt as his hormones make him care about what girls think about him. His 15-year-old girl first cousin who used to like him now avoids time with him (she lives in another state, so it's not too obvious at this point). How did you feel at such a point in your life?
Tim Page: In a funny way, I was helped when hormones kicked in. All of a sudden, I was crazy for girls and really wanted them to like me. And it became clear that flapping and yowling and doing all the bizarre stuff I'd done as a kid was not exactly a turn on for others. And so I strove very hard to control it -- not really successfully, but better than I'd done before.
I finally really WANTED company, and that meant I had to try harder to find points of agreement. I didn't much care when I was younger. Still, it was really hard for me to manage any kind of romance for a long time -- and I grew up at the peak of the "sexual revolution," when, in some circles, promiscuity was all but expected. And that was never me. I should pretend that this was a decision I reached by being more moral than many of my friends. In fact, it was just completely beyond me. Intimacy is not easy for me.
Seattle, Wash.: Hi, Tim. Thank you for answering questions. I have a classmate in my graduate program who asks confrontational questions of the professors (often on very minute points) and is completely undeterred by the groans of fellow students and professors. Might she have Aspeger's? What other disorders are often mistaken for Asperger's?
Tim Page: I can't pretend to diagnose. That said, I certainly behaved that way for much of my life and still only manage to control it with considerable energy.
Anonymous: How did you get a diagnosis as an adult? I understand that the research is mainly from the last 20 years and mostly focused on children. I haven't found any good source for diagnosing and working with adults. Thank you.
Tim Page: I don't mention this in my book, but I was diagnosed when my son, then 10, was diagnosed. He is now 19, doing very well, and he has told me that he doesn't mind my talking about his diagnosis. (Hi Robby!)
The only reason I talk about this now is with his permission. But it may be helpful. Rob's doctor explained the condition to me and said "you know, you have it too." And I'd never heard of it. But I bought books, took the online "Wired" test (which may not be scientific but IS fascinating), and arranged to set up something with a doctor of my own. And bingo -- there it was!
I should say that I am convinced that my father had some elements of Asperger's Syndrome, too. It seems to be very hereditary. That said, my brother and sister have none of it, and neither do my other two sons.
Santa Fe, NM: My 6-year-old son is in the process of diagnosis; we're pretty sure we'll be told it's Asperger's at our appointment later this week. At this point, it's not a surprise, especially since I can now look at my family and see many, many Aspies. One thing I wonder is if it's worth pursuing an official diagnosis for myself.
Tim Page: It was enormously helpful for me. I can't imagine that it would hurt you. I wish you both well.
DC: So, how do you think AS affected your ability to connect "intimately" with a partner? Do you think someone with AS can approach parenthood (in all its unpredictability)? Are there relationship techniques to help someone who does not have AS make/keep a connection with someone who does?
Tim Page: There are some books about relationships with Asperger people. I think we bring some really good qualities to relationships -- loyalty, honesty, real delight that somebody "gets" us. But there can be difficulties, and it probably wouldn't hurt to read one of these books. Just realize that everybody is different. As one of the Web sites puts it: "When you've met one autistic person, you've met one autistic person."
University Park, Md.: Compliments on your book, Mr. Page. It was beautiful and heartbreaking, and gave me some insights into my son's life with Asperger's. He's a borderline case and able to function well as a teacher (science, of course!) and musician, but I know the loneliness is terrible. Now a hard question: Is it typical of Aspies to self-medicate with alcohol or drugs? In your book you seemed to drink quite a lot at times; is this something an anxious parent should worry about?
Tim Page: Fair question. I am a great self-medicator -- Valium prescription from the age of 15; anti-depressants; pills when I need to sleep. And yes, I love to drink -- although never during the day, before a concert I was covering, or much in the way of anything more than wine or beer. I'm careful about this too -- I never keep anything in the house if I'm living alone and I don't like being "drunk." Loss of control is one of my greatest horrors.
But yes, I've been terribly anxious since I was a kid and it doesn't seem to get better. And so I still self-medicate, to a fairly moderate degree.
One thing I recommend is Transcendental Meditation, which I have been doing for 33 years and which has helped me greatly. I'm not at all religious, and I really think that the technique would be invaluable, no matter what religion you are (or not).
I don't particularly approve of the organization -- they charge a fortune now: I learned for $60. I hope somebody will find a way to make meditation less costly, so that more people might be helped by it. It truly changed my life, and I have no idea where I would be if I hadn't learned. All of a sudden, I had a way to control myself -- what a gift that was!
Arlington: I bought the documentary "A Day With Timmy Page" a few years ago (it's available on amazon.com) and loved watching it. Not only does it perfectly capture children's lives in the '60s, but it's just delightful to see how intelligent and creative you are. I was astounded when your New Yorker article about Asperger's was published, because on film you looked like a normal, if extremely hyper-intelligent and focused, boy.
Tim Page: A boy with a BIG temper. I talk a lot about "Day With Timmy Page" in "Parallel Play." I'm glad you liked the film!
Ames, IA: It seems like parents are starting to use the description of Asperger's as a catch-all to identify their child as not-quite-right, exhibiting unusual behaviors, but really smart, none the less. It's like the hip, upper-middle-class disability to have. Do you find people using the term too loosely, applying it to any sort of quirky kid?
Tim Page: I do think that it is sort of the "diagnosis du jour," but if you know a real Aspie kid, you'll see the difference. I'm just glad that it is being explored and talked about. When I was a kid, the very thought that I might be autistic was never considered -- autistic kids didn't talk and rocked back and forth all the time, or so the legend went. I hope I live to find out more about what makes this condition -- and to explore some of the occasional positive things about it.
NYC: I have to say, I loved the e-mail you wrote about Mayor Barry! I think a lot of people agreed with you. Although I'm reluctant to play armchair psychologist, I think my boss has Asperger's (I've done lots of research)and I am trying to find the best way to work with him; he is such a jerk sometimes! But I understand it might be because of my method of communicating with him. It's difficult because I am his assistant and I have to bug him a lot with little questions and I get the feeling I am driving him nuts. Any advice on the best method of approach? I've learned to e-mail instead of popping into his office, and that seems to help. It's just hard not to take it personally when he can be so rude and arrogant. I just don't know how many allowances I should make for him just because he processes things differently.
Tim Page: It might be worth looking into. Bad bosses are a nightmare.
Atlanta, Ga.: Hi, professor Tim. I told you in your class last year that I always read your Washington Post chats, so I'm checking in here so you know I'm maintaining my perfect record. Even after moving away from Los Angeles (I'm finishing at a distance). You needn't answer this; I'm just saying hi since I couldn't make your presentation at USC. I'm enjoying what I've read so far in this chat, and I look forward to reading the book.
Tim Page: Great to hear from you, whoever you are! And thanks for tuning in.
Washington, DC: My son attends a special program for aspies and others on the spectrum. It's wonderful, and yet, I can't help but ask myself whether it's not enabling him in the long run. Would it be kinder in the end to have him attend a mainstream public school, since he will have to make his way in the real world eventually?
Tim Page: I wonder about this myself. I grew up in a small town -- Storrs, Connecticut -- and I think in some ways that I benefited by having to adjust to the school (which actually was trying to get me psychological help) and to the town. Cities are different. Remember that a lot of Aspies are quite intolerant of others -- we don't understand difference very easily -- and it may be helpful for your child to be around others like him. Here again, I think you should think this over carefully, and perhaps talk to a doctor.
Bowie, Md.: Do AS persons have problems with sexual orientation (gay or not)?
Tim Page: My guess -- and this is all that it is -- is that there are as many Gay Aspies as you would expect to find in any other portion of the population.
I think that a lot of Aspies tend to be fairly auto-erotic because they have difficulty with partners -- not just sexual but in the day to day business of life. One reason why, when we find a kindred spirit, we never want to let that person go. I still have mad crushes on people I haven't seen in 30 years. The fact that life has gone on and that people have changed doesn't quite occur to me. And when I do run into these people, I still see the person I loved then and love them no less for anything the years have done to them.
Olney, Md.: My son is diagnosed with Nonverbal Learning Disability which falls under the Asperger's umbrella. Though he talks about classmates and he has joined the speech and debate club, he never associates with anyone outside of school. He seems happy and feels comfortable with himself, but should I make more of an effort to get him together with other kids after school hours?
Tim Page: I really don't know. I don't think there is anything wrong with being a "loner" if you are happy that way. Much of the time, I'm happy that way. The real problem is when the misery sets in. I guess I subscribe to the "If it ain't broke, don't fix it" school of thought.
Diagnosing: There are aspects of my mentality that could be explained by either Asperger's or simply an avoidant personality, with the latter stemming from emotional abuse. How would a professional determine which one is responsible, or could it involve both? I hadn't even heard of Asperger's until I obtained my childhood counselor's records and shared them with a few friends, who almost immediately asked if I had ever been checked for ADHD or Asperger's. I read the Oasis Guide and it was eerily autobiographical -- I thought I was the only one who preferred non-fiction and who read encyclopedias for recreation.
Tim Page: Yes, when I read about Asperger's, I felt that I had discovered my autobiography. One article even mention old records, black and white film, true crime, dates -- I wondered if they had created a learning disorder just for me!
Clifton, Va.: Hi Tim. Just wondering: is multitasking difficult for you?
Tim Page: Increasingly. I can hardly do it at all any more. I used to be pretty good. Increasingly, I have to burrow in.
Madison, Wis.: I was diagnosed with Asperger's syndrome as an adult. One thing I've realized is that everybody is a little "autistic". The problems I have are, in fact, a more extreme form of tendencies everyone experiences. There is something very, very normal about the struggle with obsessive interests, unreasonable aversions and anxieties, difficulty in parsing and adapting to social situations and maybe especially the tendency to a kind of "blindness" in relation to other "selves" and folding in on oneself. I think that to identify oneself with the disordered tendencies as a part of the "self" is problematic. The struggle with these things is a part of the human struggle which we all share. I struggle more weakly than many others, on the margins, making many mistakes, but maybe I am all the more human for that. Do you think that some of the culture of Asperger's syndrome is sometimes antithetical to the positive development of the person and their capacity for love and self-gift?
Tim Page: I think you are right. Everybody is a little autistic. I've received a lot of comments from people who say that they recognize some of the states I describe in "Parallel Play." Nevertheless, I think that AS is a real condition and it was helpful for me to have it recognized. What to do about it still baffles a lot of us.
Cannon Falls, Minn.: As mom of an 11-year-old on the spectrum, I'm looking forward to reading your book. In your opinion, should I be helping him (very light pushing) to make friends, or just let him decide if/when he wants to make friends? I go back and forth on this all the time.
Tim Page: 11 is a pretty important age. My guess is that he will want to get to know people increasingly as puberty descends. I'd play it by ear. Does he seem happy? He'll probably find his friends -- but they have to be the RIGHT friends. Aspie kids don't get along with everybody. In fact, they are usually mystified by a great deal of typical human behavior.
Bemidji,Minn.: I have a 21-year-old son that I'm certain has AS, but he is resistant to learning about it. He is similar to you in that his talent is music (majoring in music therapy), has the disorganization difficulties and most of the list. The question is, does it take the meltdown to bring AS persons to accept the condition, or is there a gentler way to acceptance?
Tim Page: I might let him adjust to it as he needs to. I have a friend at a major research university who is positive that she is surrounded by Aspies -- that they are the "norm" rather than the exception where she teaches. I often describe Asperger's Syndrome as just "the absent-minded profesor times five."
Speaking of which, it is time for me to profess! I'm off to the University of Southern California to teach. It's a good life.
I was happy to talk to you again, and wish you all well. Great to be back at the Post, if only for an hour.
Maybe I'll run into some of you in Baltimore, when I'm back for the holidays.
Till then, all best.
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