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 a Brandeis University who plans to major in history.

Comments

[Becky]

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.

[M]

Jake,

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.

[Mike ONeil]

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.

[Sierra]

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.

-Sierra

[Gatogorra]

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.

[Jake Crosby]

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.

[Chris]

"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.

[Swaroop Madduri]

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.

[Lisa]

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.

[Diane]

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!

[Craig Willoughby]

Jake,
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!

[Stagmom]

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."

[Hattie]

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.

[Andrea- for Learn2nuerodiversity]

Just curious-

you said:

"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.

[Theresa]

Thank you Jake for your insightful and wonderfully written post.

Theresa

[David L.]

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.

[KarenAtlanta]

Jake-
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????

[Keith]

Thanks for sharing Jake.

[Lisa]

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.

[Learn2neurodiversity]

Jake,

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?