Friday, October 5, 2007

And now, some questions from the audience

I’ve been running as fast as I can, from one appearance to another, but despite my best efforts I have yet to meet most of you in person. Whenever I do a reading, I take questions from the audience, and the crowds invariably raise thought-provoking issues. Here are a few. I’ll put up more in a subsequent post. Feel free to add questions or comments of your own.

Question: Why do you think kids and teenagers with Asperger’s are often depressed?

Answer: I think we have to distinguish real clinical depression, where everything is right with the world and yet the person is so depressed they can’t get out of bed, from sadness that’s a result of life events.

Many autistic and Aspergian young people are just treated deplorably by their peers, and even by grownups. If someone called you “retard” or “meathead” every day, don’t you think you’d maybe start feeling a little bit down too? “Depression” in young Aspergians is often a direct result of the way society treats kids who are “different” and it’s something we should all be aware of in our own day-to-day lives.

Question: Are kids with Asperger’s often violent?

Answer: As I said in response to the previous question, young Aspergians are often treated terribly because the “act funny.” Some take the teasing and soldier on. Others turn inward, and withdraw from contact with other humans. Others take all they can, and lash out.

I myself have never been violent.

The vast majority of Aspergians I’ve met are shy and gentle by nature. Those that do last out deserve understanding, because it’s often their peers who set the situation up with persistent teasing and bullying. This is something for parents and teachers to watch very closely.

Question: Is there an Asperger’s or autism epidemic?

Answer: The word “epidemic” implies that people “catch” autism. I don’t believe that happens. I believe I was born the way I am, and my belief is supported by observation of my parents, my son, and genealogical research.

There is certainly a surge in autism/Asperger cases, but some of that surge is due to changes in diagnostic criteria (I’m an example of that) while other cases may result from newly emergent causes.

One possible (and controversial) emergent cause is chemical poisoning. Mercury in vaccine and lead paint are suggested as causes of autism in children, but the range of possible chemical contaminants is almost limitless. I firmly believe that we as a society do not understand the overall impact of the chemicals our industrial society puts into our food, in our air, and in our water.

There are so many examples of “good chemicals” going bad, how could a responsible person think otherwise. DDT . . . PCBs . . . asbestos . . .lead paint. Do some of today’s chemicals combine and act to cause brain damage that’s diagnosed as autism? Who can say? It certainly sounds possible. But I don’t have the knowledge to know where to look for specific causative agents.

Question: If you could take a pill to make the Asperger’s go away, would you do it?

Answer: No. Medication would dull my spark, and don’t want that. I’ll take the lows in order to enjoy the highs. I myself do not want any “treatment” via medication. That said, I recognize the enormous value of insight into my own mind (which led to my book) and I recognize other people may make different and valid choices in their own lives. For example, I am aware that many people feel a need for antidepressants or medicine to calm panic attacks. While I don’t want those things myself I am not critical of those who do.

I strongly believe that insight into our own minds is one of the best tools for any reasonably functional person on the spectrum (or anywhere else, for that matter.) I believe that to be true whether or not a person chooses medication or other treatment. Knowledge is always power, in our own lives and elsewhere. For many people, the advice, “work to make your life better” is a good alternative to, :take a pill.” It’s the route I’ve always chosen.

46 comments:

Karianna said...

RE: chemicals: I think some people might be born with the genetic susceptibility to be sensitive to those chemicals, so it makes the person more hyperactive, more sensitive to noise, or other "symptoms" (I prefer "processing differences") that end up being part of an ASD diagnosis.

But I also think that those same people may always have social quirks even if the more "sensory" issues can be avoided by avoiding those chemicals. It is just different pieces of the ASD profile.

Interesting that some people pop pills to treat "symptoms," but then dismiss the idea of diet (or vaccines, or environmental toxins) playing a role - if someone thinks a chemical can "help" then doesn't it follow that chemicals can also "hurt?"

It is all so complex! But without complex people, the world would be quite boring.

ORION said...

This is a great post John. I would really like to see dialogue like this go on in schools. I have difficulty with the comics on the comedy channel joke about the word "retarded" and I hate to see it repeated by children and young people. It is hurtful.
These are insightful questions.
Thanks john.

Tena said...

The Q and A is great. Please keep it coming.

From your preceding post: Who would ever have guessed that there’d be such a huge demand for a story like this?

The enormous success of your book is no surprise. But what a wild ride! You must feel like you've been rocketed into outer space. Thanks for keeping in contact with the rest of us.

Polly Kahl said...

Pat, you are so right about the word "retarded." Kids throw it around like it means nothing. They have no idea how hurtful it is. Unfort, a lot of the parents are the same way. The same with the sword "stupid" and "idiot." We have never allowed our boys to say those words in our house, but it's hard to enforce that rule and help them learn sensitivity when they hear it all day at school and with their friends.

Katie Alender said...

I don't know if you're aware of this, John, but one of the contestants on (the best show ever! no, I'm kidding) America's Next Top Model has Aspergers. It floored me (and, I think, the producers) how mean and petty and cruel the other girls were -- to her face and behind her back -- even knowing that their behavior would be broadcast on national TV. Unbelievable.

I'm so happy for you and so glad the book is a success. And I especially admire the fact that the book is changing the way many people will interact with people who have Aspergers... I hope you are very proud of the impact you're having.

John Elder Robison said...

Katie, Pollym and Pat, I had no idea about that because I don't watch television. But I'm not surprised about the treatment. Kids can be mean but grownups often aren't much better; they're just a bit more subtle.

Karianna, you may well be right about chemical susceptibility. I don't know much chemistry at all. Just electronics and mechanical systems.

Tena, it's good to see you made it back from South America. Did you get my book yet?

MagnusMom said...

Hi John,
I just finished your book this week. Bravo! Love it.

I wanted to pose this question to you as I know you have an interest in reaching educators.

Do you think it's better to have young elementary aged Asperger children in regular classrooms with typical peers (as long as the teacher is aware of differences and bullying is not tolerated); or do you think it would be better for Asperger children to be grouped together in a self contained classroom; much like they have gifted classrooms with like minded peers. There are actually "Twice Exceptional" classrooms where children who have been identified as gifted plus a disability are grouped together and have a different curriculum; and as a result have less "typical" peer interaction.
Also, a lot of people Homeschool their Aspergers children. In the long run, isn't typical peer interaction necessary to learn from?

I know it's a big question, but I'd love to hear your input.

Russell said...

Jon.
I used meditation to heal from depression...chemicals aren't a solution for depression anymore than they would be for Aspergers. I think that cultivating awareness of ourselves, especially our limitations, is what makes the difference.
I agree with not wanting to lose your spark. One reason why I was so unwilling to take antidepressants was because when I wasn't depressed I used to fly into serious inspiration and insights. Also I think a little acceptance will go a long way.
Jon is Jon and it is that for which we love him.

Lili Marlene said...

"Do some of today’s chemicals combine and act to cause brain damage that’s diagnosed as autism? Who can say? It certainly sounds possible."

I don't believe chemicals from the environment cause autism. I am very cautious about the idea that the effects of supposed brain damage can (with our current state of knowledge) be confidently distinguished from "idiopathic" or "pure" or inherited autism/AS.

Consider this case: a child who has always displayed sensory hypersensitivity, even as an infant, who has been strongly left-handed from infancy too, who seemed to be slow to develop some gross motor skills, but learned to sit up early due to a stiffness of posture, who has always been clumsy and a dead loss at sport, who often reversed letters or whole words in their early school years, and apparently has more than one form of the neurological condition synaesthesia. The child also pronounces some words a bit oddly, and it has nothing to do with any regional accent. Sounds like this kid's brain was wired up by an apprentice electrician? I guess soome people may wonder if these characteristics are the result of brain damage, but how could brain damage result in this child having such a high IQ score?

John Elder Robison said...

Lilli, I get your reasoning and I agree that we can't really distinguish brain damage from genetic or inherited autism.

My point is that we are contantly discovering bad side effects that our modern chemicals have on humans.

Since some of those bad effects include brain damage, it stands to reason that some autism diagnoses may be a result of that.

There is no way to know but with the profusion of chemicals in our society . . . I can't see how it might be otherwise.

John Elder Robison said...

Magnusmom, I am going to use your question - which is a large one - as an upcoming essay. Thanks for writing and stay tuned . . .

Tena said...

Tena, it's good to see you made it back from South America. Did you get my book yet?

Hola, John! Yes I'm back and happily so. Your book just arrived and it is beautiful. I will have to pry it out of my husband's hands to read.

He has a question for you. The Packard needs to be repainted. The lacquer is cracked. He's gotten heart-stopping estimates from various body shops. Any hints on whom to choose? We know it's not always about the cost.

John Elder Robison said...

Tena, what is a heart-stopping estimate? $20,000? A good restoration shop in New England would probably see that job as follows:

$10,000 strip and paint
$10,000 repair concealed body damage
$10,000 replate and fix chrome and brightwork
$10,000 replacement rubber strips, mirrors, and other small parts, and repair/restoration of inner wheel wells and other "undercar" areas that will be visible from beside the vehicle
$10,000 restore engine compartment

Your husband is welcome to write me. Restoration costs on older cars can be very very high. Painting often leads to other work, and $50-100k totals are not out of line.

Wendy said...

I have already had to deal with bullying of my 6 year old son (in first grade) in gym class with other kids sitting on him and making him cry but luckily the guidance counselor and his teacher ( because of his Asperger's) put a stop to it. Hunter wants friends so badly that sometimes he aggravates them until they lash out, but we are working on understanding about "personal space." Thank you John Elder for all of your wonderful insight for helping us parents deal with our "little aspies."

Polly Kahl said...

HI magnusmom, I'm hoping John responds to your question, and I'm hoping you don't mind if I add my 2 cents here as well. (I have an Aspergian family member who is on the lower end of the functioning scale, and two gifted sons who are in "enrichment" programs, so this specific topic is of interest to me. Our younger son is very shy, easy to get along with, and very popular, and the other is also very popular but challenges authority and resents being gifted because he feels it causes us to expect more of him, while he would prefer to do the minimum school work required to pass.)

In our school system, Aspergians go in the enrichment classes, unless their behaviors are too destructive or distractive to their classmates. The enrichment classes are 80 minutes a school day, five days a week. Otherwise, the enrichment kids are in regular classes, so they have lots of opportunities to socialize with all kinds of kids. It was important to hubby and me that our sons not be segregated from the general student population, because they need to learn to get along with the general population in the real world. (What is school and parenting, if not to prepare them for later getting along in the real world?) If the enrichment program had required segregation, we would have chosen to not route them into the enrichment program.

The way other students see "different" kids can have a huge impact on development, as well as how different kids see themselves. If we segregate gifted kids, their peers are more likely to see them as not fitting in. The snowballing social ramifications could have lifelong effects.

Your question has me wondering: What DOES happen to those kids who are Aspergian and also have severe behavioral problems? Where are they placed? I'll have to ask. Hopefully they are correctly diagnosed. Back in my day, my Aspergian family member was just considered retarded. Even though it was clear that he was brilliant, adults had a very hard time getting past his obnoxious behaviors. And of course, AS had not yet been recognized as a diagnosable condition.

Huntersmom606 said...

I am the single mother of a 6 year old son Diagnosed with Asperger's. Fortunatley he was diagnosed at three years old so we are already on our way to learning the coping skills we need to deal with this disorder on a daily basis. I have several comments, but first would like to add my 2 cents to the discussion about whether or not to mainstream these kids or put them in gifted programs. My son is mainstreamed in his scool. We live in a very rural community so there would never be enough kids with the need to justify creating a separate program. He is, however, pulled out of the classroom for one hour per day to work the special ed teacher to help him get through the work that heis unable to concentrate on in a classroom setting. This, to me, is a good balance between getting him the special attention he needs and also making sure he gets the social interaction that he not only needs, but desperately wants. and by the Way John...my son also fails every test he takes, but it is undisputable among myself, hes teachers, and the school priciple, that he is off the charts when it comes to intelligence...especially in the area of math and science. And BTW...his I.Q. is quite low, but even his Pediatric Neuropsych agreed that it is not an accurate analysis of his intelligence. I often call him my future rocket scientist.

Here is my main question at this point. I have been vwery adamant about not allowing video games in the house. I have this fear that once my son gets hooked on them, he will disappear into his own little world and never return to me. But after reading your book, I wonder if I am doing him a disservice. I don't want to keep him form the very things that may become his means to becoming succesful or gaining confidence. He could easily be the next wiz at designing computer programs or games etc...Is it a bad thing that I am keeping him from this? I would just love to hear you imput.

I also want to thank you do much for the capter titles "logic vs. small talk." It gave me such a new ay to look at my son and why he communicates the way he does..."woof!"

Jill Elaine Hughes said...

Kudos to you on this post regarding psychoactive meds. I know from much experience in the mental health/mental illness world that the hard work personal insight is much, much more effective over the long term than just popping pills. I've also seen first-hand the damage that over-reliance on medications can do to the mentally ill. That said, I don't judge people's personal choices. I also agree that autism/Asperger's are not "illnesses" in need of treatment, but different personality/brain types that are in need of understanding, not "cures."

Just started reading your book (between breastfeeding sessions; baby is keeping me busy) and LOVING it!

Huntersmom606 said...

My son, also a Hunter, is a six year old boy diagnosed with Asperger's. My first comment is response to the discussion about whether or not we should have our kids in special gifted programs as opposed to mainstream classroom. Here is what is happening is my son's school. We live in a very small town in Indiana and there are simply not enough kids on the spectrum to have a special learning enviroment created for them. What happens instead is that he is pulled out of the classroom for the last few hours of the day and works one on one with the special education teacher...again a benefit of being in a small town is a lot of individualized attention. Here he is able to work on his homework assignments with one on one attention and in a less distractive environment so that he is not so overstimulated and can concentrate. He to fails almost every test because he does not like to write things down on paper...we are in the process of switching him to oral testing which will help out a lot. This to me is a great situation...Kids need the socialization of the mainstream classroom...and in my son's case, he actually craves the socialization...he wants to make friends and fit in badly. He just doesn't understand how. Fortunatly his school is very good about a zero tolerance policy for bullies and the school is small enough that they are actually able to enforce it. We are very lucky. I guess my point is this...I dont feel like I would be doing my son any favors by homeschooling him or putting him in a special program that keeps him isolated form the rest of the kids. I can't keep him isolated forever and he will eventually need to learn how to make his way through "normal" society as efficiently as he can. One way that I try to "train" him is by initialing mini play sessions with the kids around the neighborhood, which I supervise and remove him from when he starts up with the bazaar behavior...something his dad and I jokingly refer to his "going to the Dark side" :) This usually takes about 10 - 15 minutes... As he gets older, he is able to go longer and most of the neighborhood kids have gotten used to it and have learned to accept him. I have many more questions and comments but will stop here for now...

Huntersmom606 said...

Here are my thought about meds. When my son was diagnosed, I fought meds for two years. It came to a point where I was on the verge of a nervouse breakdown, in the doctors office for millionth time with my son bouncing off the walls (literally) We were not able to continue like this...not just me, but him either. My doctor said to me "Jennifer, I know that you are afraid to use medication with your son, but are you so afraid that you are willing to sacrafice his quality of life because of your own fears?" Right then I knew he was right. I looked at Hunter and could see how unhappy he was. We had been doing all of the therapy...behavioral, occuptiona;, physical, speech...etc...it is working, but we still had come to a point where we just not functional anymore. So now we do meds...both Hunter and me...HA HA...and guess what...we are so much more functional, happy, and our quality of life is back. If I have to give my son meds (as well as take them myself) to get that...it's worth it. LIFE is one big side effect after another...we choose to go with what just gets us through our day...works for us beautifully.

Tena said...

Your husband is welcome to write me.

He will. Thanks so much for your help! He says the info you gave is was exactly what he needed.

Woof!

Tena said...

On a very different subject: You should know that there's a new book titled Woof! A Gay Man’s Guide to Dogs by Andrew DePrisco.

Woof! backatcha.

John Elder Robison said...

Tena, only you would pair my book up with a gay man's guide to dogs.

But my favorite dog movie of all time . . . Best in Show.

John Elder Robison said...

Huntersmom, you asked about kids and video games. Are you keeping him from developing a great life skill by keeping him from XBox and Game Boy?

My feeling is that the games don't teach much of value and many are violent.

If you want to teach him useful skills in front of a screen, buy a computer and let him learn to program it and write his own games.

And if he tires of that the computer has 1,000 other uses.

kevathens said...

Huntersmom:

I actually disagree with John on this point. Video games are increasingly social, and international.

While I'm not a video game expert, Microsoft's latest offering, Halo 3, can be played with up to 16 players. There are other titles in the "MMORPG" category that aren't as violent. These types of games can be a good way for a person with ASD to practice socializing with others and even make friends.

Violent games should, in my opinion, be monitored for age appropriateness, and balanced with games like Katamari Damacy, The Sims 2 or MySims, and Super Mario Galaxy.

John is correct, though, that computers have many different uses, too, such as looking things up on Wikipedia. ;)

kevathens said...

..and there are also classic games like Mahjong and Pac-Man. :)

judymelvin2 said...

You are a brilliant man who shouldn't have had to grow up thinking you were defective. I'm proud of you for creating a wonderful life in spite of Asperger's and bless you for writing your book. I recently found out that my adult daughter has Asperger's (as did her father, grandmother, and great grandmother). By sharing your thoughts and actions in your book, I am now able to gain a greater understanding of my daughter's life and her frustrations. You've helped us more than you will ever know. Bless your heart.

Judy

John Elder Robison said...

Kevathens is right . . . many traditional games like Monopoly teach kids to get along. And I had not thought of the multi player games that are proliferating today . . . more to ponder.

jennifergg said...

I read Kyra's blog and am a huge fan of Fluffy and I want to thank you for sharing your story with the world. It's given everyone much good food for thought, and I hope that as Fluffy grows up, his life might be a better because of your words.

Thank you, again, and you deserve every success.

Tena said...

Tena, only you would pair my book up with a gay man's guide to dogs.

John, I am merely the bearer of information.

But my favorite dog movie of all time . . . Best in Show.

Absolutely LOVED it.

JustMe said...

I am a 50-year old female who just read your book and I have to tell you that within the first few pages, I thought I was reading about myself. Feelings and experiences with social interaction I've never revealed to anyone before, not even my mother. I'd done some reading on Asperger's before but had never associated it with myself until I starting reading about Asperger's from someone who has it. It's completely different than reading about it in clinical terms because those articles and books always seem to deal with Asperger's at its most severe or extreme. The ironic thing is why I was reading about it, and even bought your book, in the first place. My boyfriend's 19-year old son has Asperger's. I always knew I was different from everyone else, but kept such feelings to myself for fear of what would happen should anyone suspect. Looking back, I can remember kids saying hurtful things about me...in fact, I still remember one incident very clearly. I was the new girl in the fourth grade, and as we were coming out of the cafeteria and heading back to the classroom, I heard one girl say, "See the new girl? She's really weird." I remember it like it was yesterday, and who the girls were, too. I have trouble looking someone in the eye when speaking to them unless I know them very well. Grownups always thought I was shy. It wasn't until I started working in public accounting at age 27 that I even began to learn how to relax talking to people, and it's because I didn't have to talk to them in person. Most of our contact took place on the phone. By the time I ever met any of them, we already knew each other pretty well. Today, I think most people would not ever categorize me as shy because I have learned how to interact in social situations. However, work interactions still cause me some problems. I could go on and on about the feelings and experiences I have had. To me, after reading your book, I have no question in my mind that I also have Asperger's, although possibly a milder case, at least outwardly. I don't seem to have many of the physical attributes other than clumsiness and not being able to look someone in the eye.

I may or may not consult a doctor for official diagnosis. At 50, I yam what I yam. I doubt they can do as much for me as I can do for myself with this knowledge.

Thank you so much for writing this book, it's helped more than you could ever know. Or maybe you do!

John Elder Robison said...

Justme, I am very happy to read that my book spoke to you in that manner.

I don't know if a diagnosis matters for people our age (I'm 50 also) All that really matters is learning from the stories and making our lives better, and I suspect many of us can do that just fine with knowledge. Labels are not knowledge, and in some cases, they may even hold us middle aged Aspergians back.

Wendy said...

For Hunter's mom- my son is named Hunter also. On his birthday in December, he will be 7, and is also an "aspergian" child. I am sorry that you had to go through such a hard time while trying to decide if medication would be right for him. My husband, myself and Hunter had many stressful moments when he was 15-18 months until probably kindergarten, but now things are going well. We have learned that he has so many special gifts and abilities, that most "typical" people do not possess. At first we thought he sure is going through the terrible twos at such an early age(15-18 months) because he could not transition, had meltdowns all the time, would not participate in circle time, would not play with other children, etc. He also lined up things, took the rubber wheels off any toy cars or trucks, focusing on wheels. He walked and talked early, but then started "toe walking" and had many other sensory issues. I have had alot of success with him with removing dairy products, trans fatty foods(only baked snacks liek goldfish pretzels), no artificial dyes in foods or drinks, glyconutrients, and cod liver oil. Please email me at wbkeel@charter.net if you would like to do so. I am here anytime to listen to you-another mom in need. Take care

Wendy said...

John Elder- I am so glad that you had the ability to get your great book published. You are such a generous person to share such private family memories in order to help others. It is probably a good thing that you are an aspergian, because it helped you focus on other things that brought you much happiness (ex: fixing and designing electronics). I have felt for sometime that my 62 yr old father has asperger's, because my 6 yr old Hunter is like his grandfather in so many ways and my father knows how to relate to him in such a special way. He has always said he was different, but he is very intelligent, driven, and hard-working like you are. My dad has never been to therapist or been diagnosed with asperger's. Do you think that my son might have inherited Asperger's from my father? I appreciate any ideas or insight that you can share. Thanks so much for contributing this to society, and to help reach out to other "Aspergians."

Barbara B. said...

I had heard about your book before it arrived in my bookstore and I couldn‘t wait to hear from someone on the “inside” . I wasn’t disappointed. I have been living with an “Aspergian” for 31 years. My husband doesn’t know he has it but I have been convinced since September 11, 2001 (long story) While you do indeed credit your first wife for accepting you and your second wife with helping to calm you and lend assistance with certain social situations , unless you are married to an Aspergian you don’t know how much they depend on their spouses to survive and how thankless a task it is. It can be very sad and lonely sometimes. Many Aspergians hurt others without knowing and cast blame for many things on others than themselves. I am so pleased you were led first to TR Rosenberg and then encouraged by your brother to write your book . It has helped me to know a bit about what goes on inside an Aspergian’s mind.

My first question is to ask how you might suggest I get my husband to meet someone like TR. As you said for those "over 50" the label doesn’t matter but how his condition effects me and our family does. And my second question regards the amount of time you said it took to write the book. How many pages did you write a day, did someone read things as you wrote them out? By outlines, by pages, by chapters?

I think you are going to be soon overwhelmed with the popularity of your book and how many people it will touch (if you haven’t already). And how many like me will be seeking you out for advise. Make sure you speak with someone about how to cope with the surge of popularity. It will probably become a more than full time job for both you and your spouse and sons.

I will now go and hand sell your book to every single person that comes into my Barnes and Noble. (I teach by day , bookseller by night :) Oh, and I drive a 1987 Mercury Grand Marquis Wagon that my husband has kept running since it was new…

John Elder Robison said...

Wendy, I do believe Aspergian tendencies are inherited. I saw them in my parents, and there is evidence of them in my mother's ancestors too.

I recognize there is controversy over causes of more severe autism, bit I think most people like me (fairly high functioning Aspergians) are born this way and the traits are visible in our ancestral lines and in our kids. Some generations will be more concentrated than others.

John Elder Robison said...

Barbara B, you are right about Aspergians depending upon their mates for support. Is it a thankless task? My own mate does not think so. She feels she gets what she needs, also.

In fact, since learning about Asperger's, my circle of friends has broadened considerably and life is generally a lot better, for both of us.

Your comments about marriage being sad and lonely and Aspergians hurting others in their lives could well be applied within any marriage. I don't think we are "worse" as a group, but that's just my opinion.

Many of us are smart, even tempered, gentle, logical, reliable, safe, good mates.

Those traits are generally applicable to high functioning Aspergians.

As to how you might meet someone like TR . . . write him and ask! Look for his address in the back of my book.

People with his level of insight are rare. Have you given my book to your husband? Try that, and talk about it. Maybe he'll see himself and that will open the topic up for discussion.

Now, about the book writing . . . I wrote in fits and starts beginning in February 2006. I wrote the first draft by July, then took a month off and rewrote it again for Thanksgiving.

Then I showed it to my agent and there was a round of "polishing" at which point I showed it to the publisher following the holidays. (Another 2 month break)

That takes us to late January 2007. Editing for publication took 3 months, and the rest of the time was consumed by various book production tasks.

I certainly appreciate your telling anyone about my book, and I hope my answers proved useful.

JustMe said...

I think you are right about the label. It's not really going to make a difference one way or another at this stage of my life, and I doubt if I'll talk about it with anyone but my boyfriend, and on this blog. But, I woke up this morning feeling so much better about myself! Just knowing there is a reason for why I am this way. Everything just makes so much sense now. Before, I thought there was something "wrong" with me. I've always thought of myself as being a very kind and generous person, but I guess I didn't do very well at getting it across. My whole life has been a learning curve, and it just helps now to know why. And I've kept it all to myself this whole time. What I could have done with this knowledge years ago! Thanks so much for responding to me, it means a lot.

Barbara B. said...

John, thank you for responding. Forgive me for misstating a generalization on marriage to Aspergians. I’m glad you and your spouse have achieved a level of understanding and mutual affection. I certainly wouldn’t have been married to mine if he weren’t brilliant, soft spoken, a great father, handy, organized and generally kind. You might be right in saying that most Aspergians “as a group” are no better or worse in marriage. Most marriages today don’t last in the general population, the fact that we have succeeded in remaining together after all these years could be a testament to the Aspergers. That said, it is sad for me not to have gotten a single card or flowers in thirty years, even upon delivery of three children. It’s lonely when friends are offended by unusual comments made at inopportune times and they don’t come back. They’ll see me but won’t come when he’s home. Same with immediate family. Most understand, but they question MY sanity for sticking it out. And thankfulness is relative and probably overrated. I wouldn’t know, I haven’t been thanked nor heard an apology for a single thing in over thirty years (But maybe other husbands are like that too) Neither my mom nor dad have Asperger traits. My in-laws ALL do. My nephew is the only one to have been formally diagnosed. . I will give my husband your book, but I gave him Atwood’s book years ago with no result. You are to be commended for being open to the suggestion of an educated friend who was gentle enough to wait until he sensed you were ready to hear it. I have tried to be patient and gentle waiting for his readiness to accept some professional assistance. I have been waiting since the towers (he worked in ) came down for my husband to realize his reaction to that day wasn’t typical. He isn’t ready to hear it, and certainly not from me. Your book bought him a little more time. Let’s see what happens.

The fact that you wrote this fabulous first book in a year is incredible.
And one last thing, you have introduced me to blogging. I have never done it before. It’s FUN! Thank you

Wendy said...

John Elder- I noticed on your your blog site that you service Bentleys. My father has a white Bentley and it is his "baby." He likes to race cars in his spare time with the Panoz racing series. Thanksgiving 2 years ago, he was so excited because he made it from Tampa, Florida to Birmingham, AL (my home) in like 7 hours in that car. It has an incredible sound system and we like to crank up Pink Floyd's "Dark Side of the Moon." I emailed my son Hunter's 1st grade teacher about your book and she was so excited to hear about its release that she went to buy it yesterday. Also, she wants to learn more about redirecting his behavior in the classroom when he gets frustrated. Apparently while Hunter was at his math center on Friday, they were playing bingo and another child dumped his card before the game was over, and Hunter got frustrated and grabbed a bunch of cards off the floor. His teacher wrote us an explanation of what happened and made Hunter do the same below her paragraph. Hunter is a fascinating child, whom you would thoroughly enjoy being around. He is so smart remembering everything, and is very artistic as well as funny too. I don't mean to brag, but he is my firstborn child, so it is hard not to. Hunter is in the Mountain Brook School System which is the best public school system in our state, and they focus extensively on autism spectrum disorders-it would be great if you could come down here sometime and help further educate the public about Asperger's . Temple Grandin spoke at UAB (Univ. of AL Birmingham) a couple of years ago and had a very receptive crowd. Anyway, you are making a huge difference with your book! Thanks so much.

E. said...

John -

I thoroughly enjoyed reading your book and thank you for writing it. I have an 11 yr old son with Aspergers. Your perspective is very helpful and it was nice to read a book that addresses Aspergers as you do--as a way of life instead of as a "Syndrome" that needs to be cured.

In my experiences with my son so far (it's been less than a year since we've had his diagnosis), his struggles come mainly from the fact that he doesn't easily fit into the "box" that our society and school system seem to require for their measures of success. We are fortunate that our son has friends, is intelligent and gets by pretty well at school. He sometimes works so hard at fitting in socially that he really doesn't have much energy left for school work but because he is very bright he still manages to get above-average grades. We still deal with some kind of behavioral issue on a weekly basis at school but as John mentioned in one of his posts, they almost always stem from a social situation that my son does not understand--not just a penchant for misbehaving. Thankfully, our son is not violent (due to his own rules of no hitting or swearing) but I can see where Aspergian kids could easily be pushed to the point of lashing out physically.

I was encouraged by the comments in your book about your own social development. The logical thinking explanation was great and I've often thought that my son has more common sense that most adults but it's not really an asset when dealing with other 11 year old boys. I look forward to reading about your opinions on issues related to school and social development for young Aspergians.

To the other Moms that are posting with their concerns... We enrolled our son in a martial arts (taekwondo) program about two years ago before we knew about the Aspergers. He had occupational therapy for about a year which helped him with some motor and sensitivity issues but the Taekwondo program has had a greater impact on his life than all of the therapy and other things we have tried so far. It has improved his coordination, taught him self control, increased his self-confidence and taught him many necessary social rules. It's an individual sport but it is taught and practiced as a group so he's making new friends. He's come so far with his coordination and confidence that he is playing a team sport for the first time this year and actually enjoying himself!

Thanks again, John!

MagnusMom said...

John,
Knowing what you know now, do you think it is essential to teach young Aspergerians (3-6 years old for example) how to look people in the eye?

I have a 6yr old. We have done some wonderful therapies, one of which included doing some fun things with promoting eye contact including staring contests. I also do a thing with my son where I pretend to have an electrical connection when we make eye contact. I also show him how annoying it is when someone you are talking to won't look at you: he was trying to tell me something and I purposely wouldn't look at him. It drove him crazy (but it was not done in a mean way, but a fun giggling way === but I wanted to make the point of how it felt to not have me look at him when he was trying to tell me something). Anyway, I feel these kinds of games are very helpful. They are not shameful or anything like that.

Would these kinds of things have helped you as a child? I think if parents of Aspergers children just used common sense in dealing with "behavior" problems or differences, the results would be better. I have found there is no "magic" therapy except using reason and logic, and making it fun.

What troubles specifically did Cubby have that you recognized, and how were you able to teach him a replacement behavior, or whatever, to help him with some of the trouble areas of Aspergers to make him so successful today?

Us Moms are particularly interested in just knowing basic, simple ways we can help young Aspergians get over some social hurdles. I do believe making eye contact is essential, because like 90% of communication is nonverbal, and they miss out on certain social cues that lead to the misunderstandings and hurt feelings, or missed opportunities. So, don't you think overcoming the eye contact
"problem" early is essential? Or, is it your opinion that we just need to accept that our children are going to have trouble with eye contact and not do anything to help them improve in this area?

Remembering that it is a fine line between forcing someone to do something they cannot do, to being proactive about helping them. Know what I mean?

Thanks :)

John Elder Robison said...

Magnusmom, I think 6 might have been to early to teach me about eye contact. I found it too distracting. Maybe 10-11-12.

I have to go now to do a reading but I'll try and return to this

MagnusMom said...

John,
Thank you for even responding at all, considering how busy you are.

I'm sorry for asking so many questions but it's like having my own personal Parenting Coach! Just kidding. Thanks again, I do appreciate your input, as I'm sure everyone does here. It means a lot to us to be able to pick your brain; it's not easy to get this kind of information from books, support groups, etc. Thank you so much.

Pamela Azar said...

Thank you for being you...thank you for writing this book....I bought it and a local newspaper is going to do a story on my son....I am fighting for his rights in the school system that has terribly brutalized him. Unfortunatrly I am in constant fear of losing my job because I work for the same school district. So many bad thing s happened but I have worked so hard to get him back. he is as remakable as you but different of course as all Aspergians are...I hope you will come to TI some day so you may sign our book and I can personally thank you...best regrds to Cubbie and Unit 2. Thank You pamela

John Elder Robison said...

Pamela, thanks for writing. Perhaps folks in the school district will read my book, and they'll get a bit of insight into how young people like me are really feeling. I hope my book increases the world's level of understanding at least a little bit.

doodle said...

I wish I had been in Amherst for the reading at "food for thought"! I went to high school there and return every summer with my 3 daughters.
Oh well, at least I can order the book here in Ireland... and I cannot wait to read it.

All the best.
Doodle