Monday, October 27, 2008

Why Do You Walk? (or don't you)

Autism Speaks has been shrouded in controversy for awhile. Our San Diego Walk is next Saturday and although I part company with Autism Speaks on issues of style and some content, Reid and the Kingsmen do still sing at this local event. It is a great performance opportunity for them with a receptive audience of wonderful people on the same pilgrimage. The Walk Now for Autism is the single largest unifying event of families like ours, here and most likely, in your town too.

Our walk team this year is dubbed the "Kingsmen Roadies."  Our focus is supporting the band and displaying their talent, development, and potential to the autism community.  Who better to celebrate their accomplishment than those in the same boat who live the odds we've face to arrive at this point?  Who better to encourage, than families farther down the pike who need hope for their kids?  

No human being and no human organization is perfect. Not Autism Speaks, not TACA, not ASA, not the church. Although I still publicize and promote the walk as a chance to cheer Reid on, I always downplay the solicitation angle. Distrust and suspicion have made me wary. I give a small donation myself in solidarity for a compelling cause in my life...and in pursuit of balance. At the same time, I feel honor bound to recognize both sides of the story. This article by Cody Boisclair is one of the best I've read of many objections to the largest autism organization in the country. It was posted on the Autistic Self Advocacy Network website which does just what their name claims.  They provide a forum for articulate adults on the spectrum to voice their informed opinions.

Just as I cannot be a single issue voter, I think we ought not be single issue donors. They've made mistakes.  Autism Speaks has also done a tremendous job increasing public awareness and engaging the media.  So, I support with a caveat. Object while being involved. And hope to wield influence.

To me, tragedy doesn't sell, hope does!  We experienced some of both at the Team Captain kick-off meeting before the walk.  Reid and a fellow Kingsmen band member (who also loves the limelight) are always proud to do musical solos at the Crowne Plaza banquet hall where the rally is held.  For the last two years, their performances have been unintentionally ironic.  As if in spontaneous debate with the typically depressing Autism Speaks platform, their songs corrected the record.  

I don't know if it's this way in every city, but in San Diego, the agenda includes a plethora of announcements and an invited speaker whose job, I would think, is to demonstrate how funds will be put to good use.   Well, twice now I have felt the speakers were not only tearfully boring, but also inappropriately negative.  They portray autism in characteristic Autism Speaks' fashion as a tragedy and the children diagnosed with it as a burden.  This is a real problem for me, on many levels and especially when present company includes my son, who is a heritage from the Lord, a blessing and the joy of my life; thank you very much!

I am uncomfortable with the placards on each table that show a collage of testimonials in answer to the question, "Why do I walk?"  Each more pitiful than the next, they send the wrong message to the capable teens and adults with autism who are well able to read them as they wait their turn to go on stage or be featured in other ways.  As does the statistic-filled video they show that infers my child and others across the country are numbers or worse a crisis, rather than individuals created in God's image with a plan and a future as the Bible is clear to say about all children born into this world.  I'm "gettin' my preach on," as my favorite prophetess, Ginny Owens, says.  All I could think sitting there was, "how will I would correct these fallacies entering his eyes and ears with truth as soon as possible?" Not to mention, "Should I walk? Do I have to walk? Why am I here?"  

Oh, it gets worse. (You're going to think this is fiction.)  This year's scientific speaker was a doctorate director of a local brain tissue donation program.  She talked at length and in graphic visual detail, about how dead brains of children can be useful to science and asked us (not for money) but to consider donating our kid's brains after they die, of course!  This is true.  She even introduced a grieving woman who had done so, and had her stand up for applause at the front table.  What makes that a rallying point?  And who considers it in good taste?  I was not opening my wallet, let me tell you.  I continued to think, "How can I get out of here?  "Why don't they have a backstage area where I could wait out these offensive speeches with my son who is very much alive?!"  

Until, finally, it was the boys' cue. Reid bounded up on stage in his characteristic way belted out "Hey Jude" by the Beatles, taking a sad song and making it  Then, Kenton in all his innocent, 10 year old glory walked up to the mic and sang Ray Charles' "I Don't Need No Doctor," with a few modified lyrics but the same punchy refrain. This is John Mayer singing it, but Kenton was better!

I hope it did not offend Dr. Jane Pickett, the director of the brain tissue donation program.  I hope it did wonders for her perogative on the living. 

Where I end up on all this is, I am attending the walk, promoting my son, and quoting truth to all who will listen.  The Bible talks about being "in but not of the world."  Is it possible to be in but not of Autism Speaks?

But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.  1 Corinthians 1:26-28

For God did not send his Son into the world to condemn the world, but to save the world through him.  John 3:16-18

Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will.  Romans 12:1-3 

photo credit:


  1. Thank God for Reid and his band to offer a different and perpective - one of hope and perseverance and achievement. Please tell him someone on the other side of the country is proud of him, and I mean that with all my heart.

  2. Thanks for linking to my article— I'm very happy to see it's been making its way around the 'net.

    I'm actually sort of trying to do the same thing that you mention: "object while being involved." I have no problem with autism awareness, but I do have issues with the way Autism Speaks tends to present it, and would really like to see them change their ways. I may not be able to do that on a national level, but I'm at least trying to convince some local AutSpe-affiliated organizations to be less doom-and-gloom for a start.

    — Cody

  3. Hello, This is Jane Pickett who talked about brain research at the San Diego walk kickoff. I thought Reid and the band were great; Kenton was wonderful in his self advocacy in 'I don't need no doctor'. Unfortunately, there are people with autism who have epilepsy who need doctors; even then these children have a high mortality rate.

    Let's take a realistic view of autism and accept the fact that many with autism also have other conditions that have a negative impact on their lives, make them vulnerable to illness and even death. Nancy, the brave mother, whose son Kevin died last year at age 11, attended the meeting help let people know that if they too are faced with a sudden unexpected death, the Autism Tissue Program exists to facilitate brain donation to understand what happened to cause the death and how the brain was involved.

    The combination of autism with epilepsy accounts for about a third of deaths of children in the Autism Tissue Program. The other two thirds of children did not have seizures but still most died suddenly and unexpectedly. At the meeting, I talked about another boy named Reid, age 11, just as cool as Reid in San Diego, who is one of these kids.

    So, when parents like Nancy who came to the meeting or Reid's parents ask us to help them understand about the struggles with epilepsy, the unremitting seizures or the sudden premature death of an otherwise healthy child, we have a program to help look for pneuropathology that can help explain what went wrong, support them in bereavement and offer them opportunities to stay involved.

    Adults have written about the brain donation and research program. Our website is and on it you can find the opinions of adults with autism about the importance of brain donation for research and more about our program.

    I appeal to all to be informed about all aspects of autism and be especially kind to families who have undergone a loss. Based on statistics from the last two years, 37-38 individuals with autism, most in southern CA, will die this year. You may know these families and our program is there to help. An autopsy is usually preformed when person dies unexpectedly and the brain removed; it is just one more step to donate the brain for research.

    Sunday's San Diego paper had a picture of Joe Davis, the chaplain at the medical examiner's office who has been a source of helpand comfort at these difficult times too.

    Walk day. Nancy and I will be at the Autism Speaks booth this Saturday, November 1st. Come and tell us how to talk about this so very difficult subject of death; we are open and interested.

    Come talk with all of us at the AS booth and find out what the science programs and family services are doing and tell us your ideas.

    Sincerely, Jane Pickett, Ph.D. Autism Tissue Program.

  4. Dr. Pickett,
    Believe it or not, I have a high need for harmony and the fact that this post generated your response has me feeling out of sync. I suppose I am the accidental blogger, since I loathe confrontation and disagreement. What's more, I lack much scientific aptitude. So, let me say first, thank you for your diligent, painstaking work on behalf of the kids who are at risk of early mortality. Secondly, please forgive me for being hurtful to you personally in any way. I appreciate your graciousness and will find you at the walk Saturday. I think the question to grapple with is not so much how to talk about the "difficult question of death" but, when and where. I think it can and should be done so that young boys on the spectrum do not hear it and ask on the way home, "Mommy, am I going to die?" You and I have related, but distinct, gifts and passions. Hopefully, the autism community will benefit from them both at the right time. As Ecclesiastes says, there is a time for everything under the sun...including a time to die and a time to dance...or walk!

  5. Andrea, it appears that we were meant to meet. I am looking forward to seeing you Saturday and all the walkers. Jane