Living with Asperger's
Managing Editor's Note: This post was sent to us by a college student with Asperger's syndrome. We're happy to have Jake Crosby join us as a contributor.
By Jake Crosby
While there is little debate that severe Autism is a disability, there is an ongoing war about the effects of a milder variant of the disorder known as Asperger Syndrome (AS).
Naturally, anything that causes a person to be in self-contained classes for a decade, keeps him from having many friends, and causes him to have a history of anxiety, would appear to be a disability to most people. These are the ways I have been impacted by my AS; I can't think of anything positive it has done other than my sense of accomplishment after overcoming some of its challenges. However, a small, new camp is emerging from within the Autistic community of Aspies who believe AS and even Autism in general is a great thing.
This politically correct group of people says that Autism is not a disorder, but a "way of life." They deny that any environmental factors such as mercury and vaccines could have caused Autism and they claim they were meant to be Autistic. Most of all, they rail against any potential for a "cure," and see wiping out Autism as synonymous with wiping out the people themselves. While there are many mildly Autistic people like me who are busy trying to overcome our challenges as much as we can and severely Autistic people who are struggling to even speak a word, this crowd is getting more and more vocal about their staunchly pro-Autism views.
Whenever asked about how Autism has benefited them, they make irrelevant connections to their redeeming qualities such as photographic memories, musical talent or computer skills. Oddly enough, none of these qualities can be found in the DSM-IV on Autism. Furthermore, there are people out there who possess all of these skills and are not Autistic. The pro-Autism party tries to claim that Autism makes people intelligent, when it's entirely possible that Autism's environmental triggers tend to affect those of high intelligence.
Strangely enough, even these autism defenders admit to going through major challenges their whole lives as a result of their AS. I read their experiences online, and they are a lot like mine: emotional problems, problems in school, problems at work, problems at home, problems seemingly everywhere they went. Yet, they then go on to claim it's part of "neurodiversity," even saying Autism is an evolutionary step forward. But what "evolutionary step" could lead to a whole population of people needing disability benefits from the government or a disability classification in schools? One Autism advocate wrote he believes AS is an evolutionary step forward and that he wanted disability pensions from the government for it - all in the same breath! How can evolutionary advantage even be argued with people who have problems forming relationships, a prerequisite to sexual reproduction? Evolution is the result of Natural Selection, but Darwin's "Survival of the Fittest" would not favor autism traits.
Despite this, these people are determined to see AS as a positive advance in nature, not a negative impact from toxicity or any other cause. When confronted with the emerging information that the 6000% increase in Autism is related to poisons in vaccines that are overused, they instantly say there's "no evidence," citing the pharmaceutical/CDC party line. Similarly, they ignore mountains of independent studies that show the link to Autism just as the CDC has. While the "neurodiversity" advocates and the pharma-goons clearly have separate agendas, they act similarly.
And yet, they're actually on completely opposite ends of the problem. On the one hand, we have the wrongdoers who are trying to protect their careers and their reputations by denying any responsibility for the problem they have created. On the other hand are a sub-group of their victims who do not like admitting that they are victims. Yet, most of these people by the time they were 2 months old had received 62.5 micrograms of ethylmercury - 99 times the EPA limit on methylmercury, a less toxic substance.
In a strange way, there is a parallel here. The pro-Autism party, like pharma/CDC, sees that they have a lot to protect too. They believe autism is an inseparable component of their identity, and view it as a strength rather than a disorder. Of course, the major difference is that with the pro-Autism party it is merely the illusion of something to protect that has fueled their campaign. Autism is not really who they are, nor is it a positive characteristic; it is a disorder.
My parents were unusual in trying to find out why I was the way I was and in seeking helpful treatment outside mainstream medicine. This is in sharp contrast to parents who would simply accept the explanation that their children are "wired differently." So I never I felt that I needed to "like" having AS, although I do accept it.
When people cannot easily search for logic, they make up their own. The problem is once that has happened, it is very hard to change their minds, even if the evidence is right in front of them. Tragically, this has become one more advantage to the people who are the cause of the problem. No one else can be more useful to them than this group of people reiterating their denial that vaccines don't cause Autism and actually saying that it is a good thing to have, even though they suffered from it too.
If only they would stop pretending Autism is in any way beneficial, and realize that their true strengths are who they really are, and that their disability is not. I can't speak for all, but as someone with Autism I can say these people with my same condition who claim to speak for me do not. I do not believe these people speak for the majority of people with AS. No one else I have known with Autism has actually said they liked having it and I have yet to actually meet these people who do.
Jake Crosby is a student at Brandeis University who plans to major in history.
i really can't agree with this article at all. jake, i know it's hard to be different, but being non-autistic can be hard too, such as not being able to understand other people's perspectives. You also probably wouldn't have that great sense of detail, and you could still have trouble with relationships afterwards.
Posted by: Nate Watkins | July 23, 2014 at 07:04 PM
I have Aspergers, and I attended the University of Pennsylvania and finished with a B.A. degree in class of 1990.
Posted by: Michael | August 26, 2012 at 05:33 PM
I have yet to hear from an aspie who is/has been able to attend an ivy league school.
Posted by: Adam | May 26, 2010 at 01:05 PM
Hi, i am 20 yrs old and my doctor thinks I may have bipolar aspergers, but I never went to the specilist to if this is actually a factor in my life, that was one year ago and now I am 6 months pregnant. I wonder if I made a mistake and if I do have it is thier a possibilty of my child having it.
Posted by: Becky | September 12, 2008 at 03:50 PM
I admire the way you've put yourself out there. It takes a lot of bravery to say the things you've said.
So it pains me to very much disagree with you. I'm sorry that you don't feel like there's anything beneficial about your Asperger's Syndrome. But I would point out that you are currently a student at a very selective university. And I'd be willing to bet if you looked around you, you'd see a higher than normal percentage of people around you on the spectrum.
You say that Asperger's is not associated with musical or intellectual talent. I don't know what you're reading, or who you've been around in your life. But from what I've read, and from growing up in a family filled with both academics and musicians, I disagree. Not just among the people in my family, but those in the musical groups and academic programs we're associated with. I wasn't diagnosed until my 30s, and I think this is partly because I grew up in an academic family where my behavior didn't seem that different from the family and friends around me--which is both a blessing and a curse.
I also got the highest SAT score in a magnet high school. My verbal IQ tested in at 150--pretty well off the charts. People have frequently said that "things come so easily to you." Would I do so well in these areas of my life without my Asperger's. I can't prove it--but I seriously doubt it.
I do poorly in other parts of my life. I'm very high functioning, but do have problem in my love life and social life. But would I give away my Asperger's in order to be "normal"? I can't even imagine that. It's not a possibility. And if it caused me to lose one bit of my intelligence, I wouldn't do it.
And I've got to say, when you write: "If only they would stop pretending Autism is in any way beneficial, and realize that their true strengths are who they really are, and that their disability is not," it really sounds like you're speaking for the community.
Any put-upon community can have members who want to feel good about things that are negative. There are pro-HIV people in the gay community, for instance. But I honestly don't think most people who are saying Asperger's seems to come with some benefits could fairly be called "pro-Autism."
In any case, good luck with dealing with your condition. As someone approximately twice your age, I can at least say it has gotten easier for me--and hopefully will get easier for you as well.
Posted by: M | September 09, 2008 at 07:41 PM
I actually enjoy many of the aspects of AS, and would not change them to be "normal". I tire at the attempts of normals to explain what I am or how I think. I do not understand what it is to be normal and I accept that. I find that my qualities are what I consider finer in many cases.
I have two Masters degrees, and spent three years in the military. I have been able to accomplish so much because my parents taught me to be normal, and I learned how to act the part. People fail to understand how much acting someone with AS can do, and appear normal.
I only wish my parents were still alive so I could find out more about my early years, but I thank them for what they gave me.
If you don't understand me, that is your problem, not mine. I accept you as your are.
Posted by: Mike ONeil | September 08, 2008 at 08:05 PM
My son has a beautiful personality, and his ASD is not it. As he is recovering, his wonderful self and incredible intelligence are shining through more and more. Of course his ASD has become a part of who he is, but it doesn't define him. If he had received his neurological injury from an auto accident it would certainly be possible to wonder how his life would have been without that injury without negating "who he is".
People who would say that my son's ASD is his identity and defines who he was "meant" to be, would doom him to a fated existence of terrible abdominal pain, chronic burning diarrhea, debilitating food allergies, and the inability to speak for himself. Some gift. As we have addressed his underlying medical issues that are the source of his pain (can we be faulted for "changing our son" for lessening his suffering?), he has become a friendly, affectionate, life-loving child. He seems to revel in his new ability to communicate with us- to get his needs met and to show off his dazzling personality. We haven't changed the personality, we are letting it be free.
Helping our son is about giving him self-determination, about giving him the power over his life that is his birthright. It's about giving him the ability to communicate his thoughts, feelings, ideas to the rest of us, not so that we can force him to change his interests or force our ideas on him. I don't give a flying rats behind if he flaps hi hands and someone thinks that's "weird". We aren't trying to "make" him be normal. We're trying to let him express himself. AS he loses the traits that have held him back, it is clear that his strengths are his to keep. They were never part of the ASD, they were just shaped by it. Now they are his to use as he wishes, not as a neurological injury would dictate.
Thank you, Jake, thank you. Best of luck in your life. Please write again and let us know how you are.
Posted by: Sierra | September 07, 2008 at 02:18 AM
I thought this was a stunningly well-written post. Full of revelations. I know all this praise can be kind of unsettling to someone who's so much about the message of what he writes, so I'll cut to taking up the discussion, which is what I think anyone who seriously writes is really seeking from others.
The first thing that came to me when reading the article is that there are many subcultures which have formed a "master race" theory to their own benefit, not just the neurodiverse crowd. Probably in all cases the appeal of it is gross overcompensation based in assauging wounds, communal feelings of not being accepted on some level or fear of not being accepted. It's the human condition in many ways and to varying extremes, which Earnest Becker writes about in "Escape From Evil" and "Denial of Death". It never ends well.
In the current circumstances of the epidemic, the neurodiverse position is extremely unhelpful, except to the pharmaceutical companies-- Jake certainly hit the nail on the head with that. And that right there may be the thing in common which might explain the strange symbiosis between the ND movement and pharmaceutical interests-- a sense of supremacy: the little, aspiring bully's attraction to the supreme bully perhaps. Unfortunately, what many in the ND movement don't understand is that, in the suppositional case that the pharmaceutical agenda wins the day (whatever that would mean), the ND will have merely played the kapo role of slapping at fellow victims and nevertheless remain on the hit list. One can claim to refute the "victim mentality" all one wants (as the ND claim not to be victims of pharma) and still be victimized all the same because being a "victim" was only ever relative to there being a *victimizer* in the scenario, the existance of which the ND deny out of hand. To their own peril, I'm afraid, just like it's to our peril and our children's peril.
To put it in simpler terms, pharma wouldn't exactly thank the ND for their loyal service in helping to crush that crazy vaccine-injury theory by, say, lobbying for laws protecting the rights of adults with aspergers. Nor would this conglomerate and its pet government agencies protect children and adults with aspergers from forced institutionalization and drugging if their behavior was viewed as "inconvenient" or "unpleasant" by the status quo (read "The War Against Children of Color" for a bit of history on psychiatry and the pharmaceutical industry-- I don't throw the word "kapo" around for no reason).
I'm grateful and relieved to hear the voice of reason coming from the front lines. I hope we hear more from Jake Crosby. I hope he writes an autobiography that my own injured toddlers can one day read in the case that they (by whatever it takes) recover.
Posted by: Gatogorra | September 06, 2008 at 11:44 PM
Hey all, thanks so much for your support. I really appreciate that everyone has enjoyed reading my article and shared their different experiences as well. It's a very rewarding feeling to know that I have helped others by giving my own point of view.
Posted by: Jake Crosby | September 06, 2008 at 10:06 PM
"I personally find it offensive when people tell me that it is purely genetic. Watching your child scream and writhe in agony from his swelling brain is one of the most horrible things anyone will ever have to see. That is NOT genetic!"
Here here Craig! I am so incredibly sick of that also. We have absolutely ZERO family history of autism on EITHER side, believe me, I have LOOKED and LOOKED for someone who fits the criteria and I cannot even find a relative that would qualify for an Asperger's diagnosis. Yet I get told all the time that "Well, there must be someone, you just didn't look hard enough" or "whatever, you are just in denial" by people who, apparently have crystal balls and know my own family line and life better than I do@@.
I don't know if my dd's autism was vaccines but I am definitely of the opinion that it was something environmental along the way that affected her development so drastically to give us the nonverbal, not-potty-trained, stimming five-year-old cutie that we have today instead of a little girl who can sit and play Pet Shop with her big sis.
That's another thing I hate about being an autism parent - people who really do not care a whit about your situation or your child thinking that they know more about your child's issues than you do and they aren't going to listen to anything you have to say about what you think may have happened to your child to cause this, to what helps your child, to basically anything you even have to say. All you are is a big bag of "emotions" and "desparation" and "confusion" (I am so sick of being portrayed as emotional, desparate, and confused by the "other side" of the whole debate). I honestly work to avoid the whole biomedical conversation when I am with someone from "mainstream" medicine or a lucky "mainstream" parent who has been blessed to not have something like this touch his or her life. Because none of these people who think they know so much more about my child than I do will ever understand unless it does touch them.
Posted by: Chris | September 06, 2008 at 04:47 PM
This is a very beautiful, well-written article. Because I spent my entire life being undiagnosed, which is why I battled so much depression and frustration throughout my life. I struggled for many years to find out what was wrong with me, and I finally found out 5 years ago and started getting the right help that I needed. Since then, I feel like I've turned around some, but I still feel some of the side effects of Asperger's every now and then. I know this doesn't seem right, but I have such a strong hatred for Asperger's, as it has done me no good in life.
Posted by: Swaroop Madduri | September 05, 2008 at 05:30 PM
Craig, what you wrote brought tears to my eyes. I would love to sit down with some of the ND people and show them the videos of our happy, laughing , interactive babies before they had autism. Even then, I am sure they would continue to insist our kids were born "autistic" (hate that word!). I know my daughter wasn't born that way. And the only reason she does as well as she does now is because we have been relentless in getting her the necessary treatment. Without it, we would've lost her.
Posted by: Lisa | September 05, 2008 at 05:15 PM
If my 8-year old with severe autism could talk, was potty trained and in mainstream class with no support - I would stop and smell the roses - until then, I must battle on!
Posted by: Diane | September 05, 2008 at 03:29 PM
Welcome. Your article was beautifully written. My son is low functioning and unable to speak more than a few words. You have given him a voice, and I thank you from the bottom of my heart. I know he wants to speak. I know he doesn't want to be autistic. I know he wants to communicate with my wife and I and tell us what he wants, what he thinks.
Learn2Neurodiversity, my son wasn't born like this. He spoke more at 18 months than he does now. He walked normally until he received vaccines at 18 months. He quit after that until he was almost 3. He quit talking until Father's Day of this year. He wasn't born like this, and I personally find it offensive when people tell me that it is purely genetic. Watching your child scream and writhe in agony from his swelling brain is one of the most horrible things anyone will ever have to see. That is NOT genetic!
Posted by: Craig Willoughby | September 05, 2008 at 11:33 AM
I found this blog entry about Jake's piece. It's called, "I Will Worry a Little Less." It stopped me in my tracks.
http://debstake.wordpress.com/2008/09/04/i-will-worry-a-little-less/ It reads:
"I think like most parents who have children with a uninqness (disability if you prefer) we wonder if we are doing the right thing by that child/those children. I know I wondered a lot about this. Now, I wonder a little less. The reason can be found on the Age of Autism blog site. The author is Jake Crosby and he is a college student at Brandeis university. He also happens to have Aspergers. You can find Living with Aspergers here.
I guess what really happened to me after reading his article was the Neuro-diversity crowd just lost their grip on my heart that caused the doubt and guilt. Well, no more.
I would highly recommend everyone who has a child, particularly if that child has AS, ASD, or any other neuro issue, to read his article."
Posted by: Stagmom | September 05, 2008 at 10:22 AM
Thank you Jake for this insightful posting. I am deeply impressed by your thoughtfulness. Like many people reading this site, I have a son with high functioning autism. I would love to know what you feel was the most helpful things that your parents did to help you overcome your challenges. If you are able to post back to this thread, I would be very interested to hear your response. Thank you again for contributing.
Posted by: Hattie | September 05, 2008 at 10:04 AM
"I know that it's easy to get addicted to the praise from parents because you're saying what they want you to say."
Wondering when you speak out who are you seeking praise from? Who is motivating you to say what they want to hear?
Please don't say yourself. That couldn't be possibly true if you are accusing Jake of trying to please someone else.
As a young man in college I would think Jake is probably excercising some independence from his parents if anything.
Accept his views and don't make judgements please.
Posted by: Andrea- for Learn2nuerodiversity | September 05, 2008 at 09:20 AM
Thank you Jake for your insightful and wonderfully written post.
Posted by: Theresa | September 05, 2008 at 06:40 AM
So, is autism of the classical kind really more prevalent today than, say 40-50 years ago? And is Asperger's really autism at all? I don't know, but I do know I likely could have done a lot more with my life had I not been autistic. Because I can talk, and did reasonably well in school, I am considered high functioning, and therefore not really autistic at all. It hurts to think of all the jobs I was turned down for because I could not interview adequately. It really hurts to think I went to college for basically nothing. All that hard work I put in was for naught. I just don't believe autism is something for me to celebrate.
So, I am largely in agreement with your article. I could do just fine without the inability to make relationships, without the inability to connect with other people, without the frustration.
By age ten, I realized there was something wrong with me, but no one in 1970 could tell me what it was. It took more than 30 more years to figure out I had autism. There must be a whole bunch of others like me out there who, if identified, could probably account for almost all of the apparent increase in autism.
Posted by: David L. | September 05, 2008 at 12:22 AM
You are a fine young man. Sounds like you are coping and conquering well.
It's what's on the inside that counts.
I have often said I could find plenty to agree with, when reading the neuro-diverse.
I am against institutionalization, needlessly prescribing psych drugs and eugenics.
But I can't for the life of me figure out why it riles them when I treat my very sick child????
Posted by: KarenAtlanta | September 04, 2008 at 11:36 PM
Thanks for sharing Jake.
Posted by: Keith | September 04, 2008 at 07:16 PM
Wow. I was really moved by this article. The point you make that each of our strengths lies in the essence of who we are, rather than our disabilities, is truthful and takes courage to say. I think that people like doctors and parents make this statement because it's too painful to face the truth that things may have happened that caused a condition like Asperger's or autism.
Thank you for your courage and your insight. You helped me to understand something better today.
Posted by: Lisa | Holistic-Treatment-for-Depression | September 04, 2008 at 07:03 PM
I know that it's easy to get addicted to the praise from parents because you're saying what they want you to say.
But look at who you are. Who you really are. Strip away the Asperger's. Can you? Strip away my autism...I don't recognize what's left. There's nothing left that's recognizable, because everything I have ever done and the way I've done it is colored by my autistic brain. I was born this way. You, too, were born this way.
Also: lern2neurodiversity. I know that people are telling you lies about what we believe. They aren't telling you the truth. Frankly, no one who demonizes the ND philosophy has ever told the truth to themselves or anyone else about what we believe. Is acceptance-or even embracing- of our own and others' differences so wrong? Really?
Posted by: Learn2neurodiversity | September 04, 2008 at 04:20 PM
Thank you, Jake! I know if my eight-year-old daughter could verbalize it, she would agree that the limitations and minute-by-minute struggles she endures are not a cause for celebration. Autism is something she has, not who she is. She is a beautiful, sweet, brilliant little girl, and I have no doubt she would be just as wonderful without autism. She is not embracing her autism. She is beginning to understand just how autism has impacted her life. Today we began a homeschooling program, having no other suitable options. When she woke up this morning the first thing she said was, "I have an idea! Let's make my autism go away. Then I can go back to my old school." And that's coming from a child who has never been told that we're even trying to help her recover. One afternoon last spring she came home from school and said "Caitlyn's mother said I can't go to Caitlyn's party because I have autism." She was devastated. That day, I don't believe she found autism something to celebrate. Perhaps there are some who like having autism; my daughter doesn't.
Posted by: Lisa | September 04, 2008 at 03:12 PM
I was really touched by your beautifully written piece. I am the mother of a 4-year-old boy with autism who is being treated biomedically. I have repeatedly been told (by our former pediatrician for one) that I should just let him be, that I am putting him through painful and dangerous treatments because I don't like that he is different from other children. This is not at all true. I do it because he has myriad medical issues that make things he is exposed to every day painful and frightening for him. It is a bonus for us that since we started biomed that he has found his voice and is slowly learning to talk. If he grows up to be a man who is comfortable with fewer friends than I have, if he doesn't want to date or marry because he prefers to be alone, that is OK. Our goal is for him to be able to live on his own as an adult. Our worst fear has always been "what happens to him when we are gone?". Biomed can give him that an independent future. Since we have started treatment, most people comment on how much happier and content he seems. Who would not want that for their child?
I am in admiration of your accomplishments, and I hope and pray that my son will one day be able to voice his own opinion about his autism in the way you have. Your parents must be bursting with pride. I wish you all the things in life that make you happy.
Posted by: christina fergo | September 04, 2008 at 02:57 PM
Thank you for this post. You seem like a very thoughtful and successful and hard-working young man; it gives me great hope for my own son.
Posted by: Garbo | September 04, 2008 at 01:57 PM
Thank you Jake, beautifully written. My son is 8, is learning to read and has mostly prompted language and echoalia so I have yet to hear from him his feelings and thoughts so I appreciate hearing your thoughts because of this. It is a true gift. Hopefully through biomedical treatments we will be able to hear his voice at some point. For my son his physical illness highly relates to his autism, they go hand in hand. His intelligence and charisma he was born with, but the autism was regressive after vaccination. Toxicity created a fog where it's difficult for any processing to happen, the "give and take" of information is stilted. The self stimulation and repetition came much later after regression, this was aquired. I would never change his person, but I do want him healthy and able to have his individual thoughts and feelings known. I will treasure hearing yours, thank you again.
Posted by: Allison | September 04, 2008 at 01:40 PM
It's so wonderful to hear from a bright young man- a man with Aspergers, who does not want to crucify parents for helping their ill children. Can I get a "Hell Yes!"?
A young man who offers his own perspective of what Aspergers has done to him and for him. A young man who is not celebrating his limitations, yet has accomplished so much.
I can see by the comments thus far I am not alone in my admiration for you and what you have written here today.
I along with so many parents here do not have a child who can express how he feels about his "autism". I never doubted for a second he hated the pain, the isolation, the repetitive behaviors, the fear and anxiety etc.... I thank you for assuring me autism is something that is NOT to be celebrated. It is a disability.
I celebrate my son for he is my son. I do not celebrate the things that hurt him, bring him pain, and limit him. I want him to feel better and enjoy a better quality of life.
Thank you Jake- you are going to help a lot of people understand what ills our kids. Maybe because of your writing children who otherwise would have be chalked up to "differently wired" will now be genuinely helped with the kinds of interventions your parents sought out for you.
One a side note your post seems to fit into something I saw yesterday. It made me think of the ND mantra that autism is genetic-
I was watching a few minutes of a repeat from the Soparanos on A&E. In the episode Tony finds out his son AJ can't attend military school because he has panic attacks. He is telling his psychiatrist Dr. Melfi about it. He says the panic attacks are genetic because he has them and his grandfather may have had them too. She said- when you blame something on genetics you are really blaming yourself and that's what we should be talking about....
Why do the ND want to blame themselves? They should want to help themselves...as your parents helped you. I think a person can acknowledge something may have harmed them that caused them harm. BUT, there is hope if we can undertand what caused the harm and how to repair the harm done.
Autism has genetic underpinnings, but it is not purely genetic. We have a whole generation of kids being exposed to God knows what through an ever expanding vaccine program. Along with pollution and countless chemicals in the environment. These things are affecting all of us.
For those who think autism is just some genetic variation or worse an evolutionary step...well what can I say... That's absurd.
Autism is an epidemic... let's do something about it.
I look forward to reading more of your AOA contributions Jake.
Posted by: Andrea | September 04, 2008 at 12:54 PM
I also am a college student with Asperger's, working on my master's degree. I appreciate your writing, but I really do feel that Asperger's comes with both strengths and challenges. I feel like, with me and my Asperger's, there is nothing wrong with me - it's just that my levels are set differently for everything. What matters to me is different, what has an effect on me emotionally, everything. Because of this, I don't match up with most people - although I like them, learn their names, say hello to them, I am on real common ground with only a few. That's sad sometimes, espically before I got my diagnosis and understood why. I grew up very lonely. But it's like - if I were an Australian Shepherd in a room full of Pugs, I would be different, I wouldn't fit in, I would have a hard time finding common ground, but I would also be beautiful in my own way and I would have been created to be an Australian Shepherd, not a Pug. I was created to be an Aspie, not neurotypical. It does come with some downsides, but that's true of anything else I could have been. I, my father and my daughter are all Aspies; so I highly suspect that in our case it has a strong genetic component. That's okay, I like us how we are. I have met a few Aspies other than us, I liked them too. It's hard not to fit in, but not everyone is meant to be just the same. And we don't receive any type of government funding, money or help - I am employeed full time as is my husband. Things have happened in all areas of my life where having Asperger's has held me back - particularly in job interviews! At the same time, though, there have been things I've noticed that I wouldn't have if I were on the far end of the neurotypical spectrum. I love bricks, elevators and old buildings - for example. Some neurotypicals love old bricks, sure. But it's not very neurotypical to become joyful over seeing old brick warehouses. My interests are very Aspie. :) And I'm fine with that, now that I know and can forge relationships with Aspie-friendly people, I finally feel that I belong in the world.
Posted by: jenlyn | September 04, 2008 at 11:59 AM
I am so happy to see a discussion like this started. We are, sadly, a divided community. As an adult living with Asperger's Syndrome and a mother of a son with autism, I can sympathize with both sides. Before giving birth to my son, I used to enjoy browsing and participating on the forums like "Wrong Planet" and others. There was a sort of camaraderie shared by all that I thoroughly enjoyed. I remember finding a guy that had stimmed and went into "fantasy worlds" as a child just like I did - and it was an incredible feeling to know that someone else did the same weird things that I did. Suddenly, I wasn't alone anymore.
After my son was diagnosed (with non-regressive autism) and I was educated about the vaccine program and other environmental dangers - it gave me pause. I never wanted any of my children to suffer the way I had growing up. Although I had made peace with my disorder and found comfort in chatting with others who were also affected, I certainly never embraced it or wore it like a badge of honor.
Did vaccines damage me and my child? I don't know. But, it's certainly possible. I went on to have two more boys and it will be a cold day in hell before I vaccinate either of them. Autism trigger or not, my eyes have been opened to the corruption (and the crap), and we will not be participants.
Do I think I can cure my son - or myself? I don't know if brain damage can be cured. But I would certainly sign up if there were a safe, effective way to do so. All I know for sure in my heart is that we were damaged - not born as "supreme beings".
Although I do not agree with the close-minded position of the "neurodiverse" crowd, I can understand where they are coming from. For many of them, they belong to an exclusive club for the first time in their lives. They don't want to feel like victims. If they did, they would have to view their lives as just a tragedy instead of something to take pride in. I think that is perfectly understandable.
I also get annoyed with the biomedical side at times (we do see a DAN! doctor and follow a carefully monitored treatment plan). When other biomed parents (and even some "celebrity" DAN doctors we've seen) push cookie cutter supplement regimens and diets on me - or assume I am negligent for not trying every cockamamie treatment or therapy that comes along... that totally irritates me. Or, when I want to discuss how to handle a recent flair up of OCD behavior in my son - they tell me to check for yeast. That can get tiresome.
I've seen bad behavior and ignorance on both sides. It would be so nice if everyone could bend a little. Agree to disagree and lets figure out what is really happening/has happened to our children... and ourselves.
Posted by: Sara | September 04, 2008 at 11:22 AM
wow..great piece Jake! As the father of a 9-year old verbal autistic daughter, you have renewed my resolve to help her recover to the point where she may be able go to college someday. Good luck at Brandeis, great school.
While it's true that Asperger's is seen in individuals with high IQs--IQ is highly heritable and parents of children with ASDs tend to have high IQ's as well. Sounds to me that family hisotry of high IQs and autoimmune disorder is a risk factor for having a child with an ASD--NOT a benefit of having Asperger's as the Neurodiversity crowd would lead you to believe. Perhaps the Hennenbury hypothesis of excitotixicity is correct with regard to autism pathogenesis? Food for though.
Posted by: AutismDad | September 04, 2008 at 10:46 AM
Jake, thank you very much from myself and my son who does not have a voice in this issue. I'm sure he'd rather not be autistic than feel like he has to bang his head through the wall on a regular basis.
Posted by: ObjectiveAutismDad | September 04, 2008 at 10:43 AM
Jake, Great post.
My 11 yr old son fits Deborah's description to a T with the exception we do not have a dynavox and he is still battling GI issues. I have friends with children that fit your descriptions to a T as well.
I used to think "I wish I had those problems" when they spoke about their expeirence with Aspergers syndrome. I know better now that in some ways they have every bit as much a challenge as I, and socially it can be worse.
Any peer of my son's would be chastised harshly by others if they picked on my son due to his obvious disability. With you I am quite sure you were open game all through your grade school years and I understand all too well how that feels.
I am most grateful for your highlight of the parallels between the goals of the ND community and the goals of Pharma and the medical establishment. It gives food for thought that there are at least three possibilities. One, that the ND community however small or large, truly beileves as they state that they are happy the way they are.
Two, that as you suggest that they are reluctant to admit that they are in fact victims (I am the most defensive when I know I "could" be wrong but do not want to admit it!). I want to add that they do however have the right to fool themselves, but not me.
Third is that some in the "ND community" are not who they say they are and are simply in it to stir up the frenzy against us who plead for a re-examination of the vaccine schedule and to implement an "Manhattan Project" research effort to examine it's TRUE links to autism.
I am not saying the third suggestion is actually true, just a possibility to consider. There is already significant evidence of blog commentors not representing themselves as government or industry shills they are, so it is not a stretch for me to think like this.
Posted by: Tim Kasemodel | September 04, 2008 at 10:40 AM
I think you are missing the point, Jake. Your AS makes you who you are. You would be a different person without it. So thinking you'd like to cure your AS (or go back in time and skip that oh-so-dangerous MMR--whatever) is akin to saying you do not like who you are. You "accept" yourself, but do not "like" yourself, because you apparently have AS, and AS is a disease you think you got from Big Pharma. You're angry, like someone who got cancer from smoking cigarettes. You think you've been poisoned by the government, and that's a rather upsetting idea. But let it go. It's not true. Take a deep breath. Let it out. Now look in the mirror. You are who you are. Wonderful!
Living with AS can be hard--trust me, I know--but likewise for ADHD, deafness, dwarfism, and other genetic conditions. Life is hard for everybody in one way or another. Liking yourself and your "difference" or "disability" is the first step to living a happy life.
Posted by: Been There | September 04, 2008 at 09:43 AM
Jake, what a beautifully written and well put piece you have shared with us today. Thank you for your insight and for giving us, the parents, hope for our own children.
As the parent of a child who is well on the path to recovery (from nonverbal and diapers to mainstream/typical 1st grade without an aide), I feel a renewed strength and purpose to keep going.
And by the way, now that my son is talking, he tells us every day that he does not want "to be in autism" and that he wants us to "make him feel better."
I know in my heart that I am not changing WHO my son is with his treatments; rather, relieving his pain and discomfort with each step we take. By doing this we are enabling him to become more of WHO he is and who he will become - a healthier, happier him.
Posted by: Jeanne | September 04, 2008 at 09:19 AM
Thank you. Thank you. Thank you for all that you wrote. And especially for what I copied below:
"Autism is not really who they are, nor is it a positive characteristic; it is a disorder.
My parents were unusual in trying to find out why I was the way I was and in seeking helpful treatment outside mainstream medicine. This is in sharp contrast to parents who would simply accept the explanation that their children are "wired differently." So I never I felt that I needed to "like" having AS, although I do accept it."
"If only they would stop pretending Autism is in any way beneficial, and realize that their true strengths are who they really are, and that their disability is not. I can't speak for all, but as someone with Autism I can say these people with my same condition who claim to speak for me do not. I do not believe these people speak for the majority of people with AS. No one else I have known with Autism has actually said they liked having it and I have yet to actually meet these people who do."
Seeing these words come from another person with Asperger's means the world to me. You just confirmed for me that all that I am doing to help my 10 year old son with Asperger's has nothing to do with wanting to *fix or cure* him, but everything to do with wanting to give him the best possible chance at dealing with, maybe even overcoming, the obstacles AS has laid on his path.
Posted by: Petra | September 04, 2008 at 09:11 AM
I really enjoyed your well-written, well-thought out article.
I have an adult Aspie son, but he doesn't like to talk about his disability. I know he doesn't like the restrictions having Aspergers has put on his life, but he is also in denial about there being anything wrong. I think this may be the place that alot of the neurodiversity crowd is coming from.
I look forward to reading more of what you have to say.
Posted by: Kim Davis | September 04, 2008 at 08:53 AM
I knew that there was something wrong when I was eight years old. Not different. WRONG.
I thought, at that point in time, that there were no other people out there like me. Well that was in the early sixties, so there probably weren't very many.
It was quite a revelation to discover, twenty five years later, that I was not alone. However, judging by the people I encounted on the internet, one would think that all aspies were just as pleased as punch with being on the spectrum.
I felt alone all over again.
Thank you, for writing what you've written. It's pretty much how I feel, too.
Posted by: Robin Nemeth | September 04, 2008 at 08:44 AM
Such wisdom!! I'm sure your parents are proud of all you have and will accomplish.
Many thanks to you and your parents.
Posted by: Steve | September 04, 2008 at 08:41 AM
I can't thank you enough for sharing this. I sometimes get phone calls - usually very late at night - from people with AS who are compelled to tell me that they are perfectly content and happy with their lives and are offended by "curebies" like me. Some of these people take it as far as accusing us of attempting genocide. I tell them that I respect their feelings and that I hope they will respect mine. I'm happy that they are able to lead lives that are fulfilling for them. But my daughter is very sick and I will not embrace her illness. I will keep fighting to restore her health.
Jake, I hope you will continue to contribute to AoA. Thank you!
Posted by: Wendy Fournier | September 04, 2008 at 08:32 AM
I just wanted to personally thank you for your article. As a parent of a non-verbal 11 year old son (yesterday was his birthday), I have wondered if he is happy and whether or not he wants us to heal him.
All though non-verbal he does communicate with us via a Dynavox computer system. He appears to be happy. I know for a fact he is healthy. He takes supplements, goes to a school specifically designed to educate the child with autism. He is very loving and affectionate (and always has been). He reads verbal cues very well. He understands facial expression and emotions that require a bit deeper thinking than the norm. He understands and displays empathy. His imitation skills are constantly improving.
And still I wonder if he would prefer something other than what has been provided for him. After reading your piece, I will wonder a little less.
Thank you. I will be doing a piece on my blog because of your article.
Posted by: Deborah | September 04, 2008 at 07:59 AM