Letter to John Elder Robison

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A few months ago I wrote a letter to John Elder Robison, author of "Look Me In The Eye". Here is the letter.




April 23, 2010

Dear John,
I am a teenager with Asperger’s Syndrome. I recently read “Look Me in the Eye” and it really helped me understand why I am the way I am. I posted a link to my online blog a while back on your Facebook fan page. The tagline at the top of the page is “Asperger’s Syndrome through My Eyes”. The blog basically talks about my experiences with Asperger’s Syndrome and how it affected my academic and social performance in school. I started writing this blog back in July of this year, and since then I have written fifty blogs and also gotten over 3,000 visits to it.

I am glad that people have visited my blogs and made comments about how they can relate to my experiences, however I hope to someday publish a memoir book that explains my experiences growing up with the disorder. I think the world needs more people to express themselves about their experiences with this so called “disorder”. After I started writing my blogs, I began to realize that everybody in the world has been through feelings of not belonging, like myself. This is something that most people with the disorder don’t realize. It is a very common emotion that most people don’t like to admit they’ve experienced.

I wanted to personally thank you for helping the world understand my diagnosis. You can’t find out about peoples experiences with the disorder in any college textbook. “Look Me in the Eye” is one of those books that helped me understand myself. Like I said, the world needs more people to do the difficult task of understanding Autism, and the more people write about their experiences, the more others will understand.
Thank you for taking the time to read this letter,

Sincerely,

Derek Warren


My Blog: http://dwarren57.wordpress.com/

Last edited by d057 on 20 Jun 2010, 6:11 pm, edited 1 time in total.

That would be so cool if he replies!

He actually did reply about a week after I sent it.

Here was what he wrote:

Dear Derek,

“Thanks for your note, and the effort you’ve put into your blog. Every person who writes of his or her experience builds awareness, which is a good thing. As you say, 3.000 people have read your writing so far, so keep going, and the best of luck with your memoir idea.”

Best Wishes,

John E. Robison

I have written to authors in the past, and Mr. Robison is the only person who ever responded to me.

While I agree with you 100% that the world at large needs more awareness of AS and what it is, please be careful with remarks like 'so-called disorder'. I understand that you may not feel that your AS is holding you back to any remarkable extent at this point in your life, but that only points to your high individual level of functionality and your very young age. You have no way of knowing at this point in your life how AS may affect you over the long haul in terms of personal relationships, marriage, employment stability, etc. And as the term 'spectrum' implies, levels of day-to-day functionality from one Aspie to another can range all over the map.

While I do want more people with AS to be recognized in a positive light and the public consciousness raised to the level of acceptance that those with Dyslexia receive, it's also important that those who are very highly functional do not give the public the impression that AS is not really a handicap, because it most definitely IS.

Many of us already take a lot of flak from the world around us because of our Autistic limitations, because they can't SEE that we have a very real handicap. If we lead them to believe that AS is nothing more than awkwardness and poor eye contact, we will continue to be bullied, abused and discriminated against forever.

That's why I feel Mr Robinson's book is a double-edged sword - while it certainly does help raise awareness that Asperger Syndrome exists and perhaps give a touch of insight into what its like, I worry that celebrating his success story too much will give people the impression that everyone with AS should be able to rub elbows with rock stars and become independently wealthy, and thinking that, people will be cruelly judgmental and cynical towards anyone with AS who can't function that successfully.

And yes, almost everyone may feel excluded or alone at some point in their lives, but the alienation that comes from a lifetime of AS runs far deeper than the neurotypical personality's momentary 'bummer'. There's a big difference between missing an invitation to a party and living a life sentence on a planet where you don't speak the language.

The point I was trying to make was that the media thinks many people with Autism is a "death sentence" when it is not true. I have heard this from many people, and it makes me extremely angry. I am sure teachers have told many people on this website they wouldn't amount to anything in life, and that is not true.

If you check out this You-tube video, there are some very nasty comments about an Autistic boy that got kicked out of church. I am not excusing his inappropriate behavior, but people should not be referring to him as a "dangerous ret*d" or saying he should be put into a mental institution.

http://www.youtube.com/watch?v=iiA5SqU6Fnw

I think you make an important point (not just in this quote but in your whole post).

I think that the issue is true even much more generally when it comes to personal memoirs. Writing a book is a difficult task that not many people are able to accomplish, so almost all memoirs are by people who are highly literary and had some significant successes.

The possible exception are people who write about having been addicted to drugs or alcohol (or had a terrible illness that they recovered from) and therefore had very dysfunctional periods in their lives, but they too came out them well enough to write about the experience. So they give the impression that by trying hard enough, addicts can recover, illnesses can be overcome, etc.

That is really cool (That he responded, not that no one else did.) I loved that book too.

Sometimes I have the same worry you express here; that people will read my story and assume anyone on the spectrum can achieve a particular level of success that may not be actually attainable for everyone.

However, my worry has diminished with the passage of time as I've seen how my work is interpreted in the community.

I can't tell you how many people have written to say they saw themselves in my stories and by doing so, found ideas they could use in their own lives. 99% of those people were not in rock bands and didn't do the specific things I wrote about, yet they saw themselves anyway. That tells me that many readers internalize my stories or blend them with their own internal dialogue. I now see that people relate in a genuine and positive way to my writing despite having lead quite different lives

With respect to the way others (non-autistics) see us as a result of my work . . . I guess some people may assume anyone could be "just like me," but to do so would be to ignore all other observations about human behavior/success/etc. The fact is, success means very different things to different people, and we all achieve different things in life. The fact that you write about people assuming (wrongly) that other autistics should achieve my level of success shows a sharp difference between your perceptions and mine. In Look Me in the Eye, you'll recall that I left both music and the electronics industry because I felt I was a failure. So clearly you and I do not see eye to eye as to those particular achievements.

My book was never meant to set a standard for anyone else, and I never claim anyone else can or will replicate the exact path I followed. Why should they want to? What I do say, is that no one can know the potential of any child or young person. Many persons on this site are teens and young adults . . . when I was that age, many "informed smart grownups" saw me as a total loser. Yet I did end up reasonably okay. That stands as a true and valid example for any young person. You cannot predict anyone's success at 45 at age 17.

Remember that I did not know much of the autism spectrum when I wrote the book, and I now devote considerable energy to painting a more complete picture of the gift and disability sides of autism and how it shapes us throughout our lives. My writing and speaking on that is readily findable online.

Wow, I just wanted to thank John Robison for coming here to the forum and posting a reply. I'm a little bit in awe.

Thanks for having done so much to help the world understand AS, and for your wonderful book.

I really hope that more people write about their experiences in the near future. Even though you are not cash rich, it will help people understand your experiences. If anybody has good writing skills, I strongly encourage you to do it!

I just finished reading 'Look Me In The Eye' a few hours ago, and I thought it was a very well written book. True, I couldn't relate to all of it, but I still found parts of it that I could identify with, and would recommend it to others on the spectrum.

Thanks for sharing your story, Mr.Robison. I enjoyed reading it.

I can understand why some people can't relate to some parts of this story, but every Aspergian has most likely been through an experience where people have told them they wouldn't make it anywhere in life, when that isn't true. High school is a place that is not set up right for kids with Autistic Spectrum Disorders, and it needs to change here in America.