Thursday, April 24, 2014

Interviewing Autism (A Christian Perspective) - Part 1



A while back, Dr. David Murray tossed some wonderfully thought provoking questions my way in an email interview.  Those questions were about autism (particularly issues of faith and doubt as they relate to it) and about how the church can help. My answers to those questions took up more than a brief blog could handle and we stuck the info on the back burner trying to determine the proper venue for the information. As time has passed, quite a few friends who have had access to this have reminded me that there are incredibly important things here.  I have repeatedly been encouraged to share some of the information, yet have always been a bit hesitant. Despite my hesitancy, at their encouragement. I'm moving forward with sharing this with you now.

Truth be told, there's just not a lot out there dealing with autism from a Christian perspective. There's even less out there that looks at it from a personal Christian perspective - that of a person actually living with autism who is also a believer.  Recent studies suggest that 1 in 68 children are now diagnosed with Autism Spectrum Disorder (ASD). Recognizing that there are many in your communities and congregations who are battling this beast I'd ask you to consider carving out some time to read some of these ramblings.  I'll dish them out to you in several servings. Perhaps they'll help you gain some understanding about our struggles with autism - and perhaps that understanding will be used to encourage you to reach out to some families in your church who live with autism - families who probably need a little bit of help and hope.

Here in Part I a few of the introductory details of my life and diagnosis are dealt with. There is also an incredibly pertinent piece of the puzzle for helping you understand why those living with ASD may seem "disconnected" in this life. Part II begins to deal with the nuts and bolts of the autistic struggle. The remaining parts will continue in that vein. (And as a simple FYI - this is an un-edited personal copy of the interview, so have some mercy!)

Hi Lori, I’m looking forward to getting to know you and to sharing some of your journey with our readers. Can you start by telling us a bit about yourself? How old are you, where were you born, what family do you have, and what are your hobbies or interests?
David, thanks so much for the opportunity!  I am 45 years old and grew up in the “booming metropolis” of Cowpens, SC.  I was born in Sumter, SC and the details of how I came to "be" are a picture of the glorious grace and perfect providence of an all-wise and wonderfully kind God - a God who truly works all things (even horribly hard things) together for the good of His children.
I was conceived as the result of an adulterous affair between a single woman and a married man - a married man who had 6 other children!  When they found out that an unplanned child was on the way the decision was made to abort me due to the stigma and inconvenience of the situation.


My biological parents drove to an abortionist’s office - a place that hid its true identity behind a placard labeling the clinic as a “chiropractic care center.” They walked into the clinic, signed the register, and sat down in the waiting room, patiently preparing to end my life.  My birth mom says that she spent 30 minutes sitting in that lobby wondering why in the world they weren’t calling her name.  We both now know that they didn’t call her name because God was about to call the memory of His Word to her heart. 
While she sat twiddling her thumbs, God was stirring up recollections of a Sunday School lesson that she sat in on one weekend while visiting with an out of town aunt. (Church was not a regular thing in her own home.) That morning’s lesson was on the 10 commandments, and in 1968 (2 decades after that class took place) the memory of God’s imperative: “Thou shalt not kill,” roared like thunder upon her conscience!  She turned to my biological father, told him she could not end my life, walked out the door, and spent the next 7 months living in a one room hunting cabin determined to find a way to bring me to term!

If your readers are interested they can find out more about that story here - it's quite a tale.

I was adopted a few months after my birth by a very well educated couple who had been unable to have children of their own.  They raised me and provided many things for me, but life was not always easy in that environment - my mother struggled with mental illness, and sadly my adoptive parents abandoned me almost 9 years ago, severing our familial relationship and leaving me rather re-orphaned.  I am an only child.  (** Addendum: my adoptive mother passed away in February of 2014 and in the process of her passing, God wonderfully flung open the door of reconnection with them.)

I am married (for 19 years) to Phillip Sealy who is the church planting pastor at Redeemer Presbyterian Church (PCA) in Sylva, NC. We have two wonderful, though challenging children – Joshua (12 - also autistic) and Elizabeth (9).

As for hobbies and interests, I’m a musician and songwriter.  My latest CD is aptly titled “BegoneUnbelief” and is a musical chronicling of my own warrings in the realm of faith and doubt.  I love reading – the Bible, theology, philosophy, and classic literature.  Living in the gorgeous mountains of Western North Carolina, I also have a bit of a penchant for hiking these glorious hills!


You are a Christian who has recently been diagnosed with autism. What came first? How did you become a Christian? How did you come to know that you were autistic?
David, the converting grace of Christ radically took hold of me many years before the shadowy monster of autism clearly made itself known to me. 

I grew up in a very large Southern Baptist church and had a real interest in wanting to know and understand God as a young child. I was full of questions – deep theological and philosophical questions.  Questions that the people in my circles often didn’t seem to know how to answer and more often seemed to be rather bothered by. 

Within my broad church climate I was regularly encouraged to “just believe” and was ever reminded that much of God was a “mystery” and that “blind faith” was a blessing.  Those well-meaning attempts at appeasement didn’t satisfy my mind and actually ended up raising even more questions than I began with.  Ultimately they just increased my doubts.

I wrestled, even as an elementary age student, with the Bible’s seeming logical fallacies and with the entire concept of the supernatural.  I struggled deeply with the intangible nature of God, became disheartened by the duplicitous lip service that I saw in many of the “Christians” that I had closest contact with, and simply could never grasp the whole emotional altar call evangelism which, at that time, was my only encounter with “the gospel.”  (I must confess that I believe these things can be key issues of struggle for many who live with autism where Christianity is concerned, and will attempt to look at them more specifically later on in this interview.)

In high school I became fed up with the "faith farce" (as I dubbed it) and began to consider myself an agnostic and later an atheist.  I spent those years in much internal turmoil, rebellion, and despair – coming close to ending my life on at least 10 different occasions. 

As high school neared an end I was planning to head to Julliard to study classical piano.  Parental providence and ultimately the God of grace changed my plans and instead of New York, I ended up enrolled at Converse College in Spartanburg, SC – only a few miles from my front door.  I was internally devastated at the death of a dream, though clearly the re-routing of my path was by God’s good and sovereign design. In hindsight, I am grateful.

Within days of entering Converse, the Savior of sinners directed that this sinner’s steps would intersect with those of 6 Christian classmates – Christians who were utterly and completely different from any other believers I had ever encountered, anywhere.  They were thoughtful, intelligent, fun, unafraid of my questions (even when they didn't have answers) and they truly cared about me.  I was deeply intrigued by them and by their faith.  Yet, I was also deeply frustrated that they believed so sincerely in this God that I could not fathom to be anything more than a foolish fable.

Through a series of wickedly contrived and manipulatively devised schemes (between the lines you might read that as "Through a series of serious pathological lies and malicious mind games”), I set out to destroy their faith.  They set out to pray for my salvation and, with humble boldness, they continually pointed me to Jesus and to His Word - encouraging me to actually "take up and read" the Bible rather than just bristle up and rail against it.   

In 1988 ("by grace alone, through faith alone, in Christ alone") the scales of sin which had kept me in blinding spiritual darkness fell off and  I suddenly saw, understood, and came to rest in who Jesus was and in what He had done on my behalf. 

My conversion was somewhat of a modern day Damascus road transformation coupled with a high speed cognitive car crash. It left me a deeply changed person and challenged every square millimeter of my philosophical frame. I didn't enter into this place lightly, and fought against it ferociously, but how thankful I am for a pursuant Savior who would not let me go until I was His. When I look at who I was during those dark days and reminisce on the arduous journey that brought me to the Light of life, I am reminded that coming to Christ was a severely scary yet also amazingly marvelous and miraculous thing for me.  A quarter of a century later I am still amazed by God's mercy!

Autism was unveiled in my life several years ago. It was initially uncovered by a very wise Christian counselor who was trying to get to the root of a spiritual crisis that had been baffling many seasoned pastors and professionals for years.  I was having very deep and debilitating struggles with doubt - and no one seemed to know what to do with them or how to help me amidst them.

As strange as it sounds to some, I was not having doubts about my salvation per se.  I knew I was resting, not in my works or deeds, but in Christ alone to save me, as the Bible declares.  I did not desire a life of rebellion. I was not looking for some greener pasture or some grander “god”.  I loved the logic, continuity, and consistency of the Bible (things I would have denied to even be until I actually started reading and studying the Bible). I knew that I had been radically transformed by the gospel of Christ (that fact was irrefutable) and I saw that the overall harvest of fruit in my life (the Romans 7 reality of struggle not excluded) was in concert with the marks of a true Christian.  Everyone who looked at my life from the outside agreed. 

Yet, amidst all of that there was a dark, daunting doubt ever and always breathing down my neck. It was, in many ways, a metaphysical manifestation of uncertainty and skepticism. This deep doubt appeared in a rather primordial realm.  It was not so much, “Do I believe in God?” but it was more fundamentally “Is there even a God to believe in?” (To some extent I suppose I was asking “Is there even ANYTHING to believe in?”)

The difference in those two “God” questions is a very, very subtle difference - one that is grounded ultimately in the nature of true reality. (You movie lovers might think of “The Matrix” or “Inception” and that may help you get a glimpse of the issue at hand.)  This metaphysical form of doubt that I was dealing with (and at times still do)  may be missed, misunderstood, and therefore misdiagnosed as unconverted blindness (or even insanity) apart from an understanding of the autistic experience. Therefore, let me seek to explain.

Please realize that for an autistic there is often a neurological and psychological disconnect from the “real” of life.  Think about it:  that which is known and experienced as “real” in this world is typically discerned through the use of the 5 senses.  We see a person, hear a bird, taste a piece of chocolate, feel a hug from a friend, smell a flower and thus come to believe in the existence of that which we’ve just “sensed”.  One of the unfortunate disabling marks of autism is that there is a deep disconnect in the way that the 5 senses work and process in us.  For the autistic, much of life is conducted via the short circuited route of a neurologically “frayed wire”.  (Think of a frayed stereo wire.) The “wire” through which sight, sound, smell, taste, and feeling (both emotional and physical) travel has a "short" in it and, therefore, those things reach us with a great deal of “static” attached. For us, a really good connection is hard to ever find.  Thus, try as we might to connect with the things of this world, we always end up with some form of "crackling" and "sparking" disconnect in the process. 

Another way of describing the manifestation of that disconnect (at least for me) is to say that all of life is seen and experienced as if it is on film, and I exist as one who watches that film from afar.  It is as though there is a hypothetical two-dimensional “movie screen” that separates me (as an autistic person) from the three dimensional nature of the neuro-typical (“normal”) story – a story that is somehow unfolding on the other side of that sinister separating screen. 

I seem to watch the movie of life from a solitary seat in front of that screen.  However, this live action “film” will not allow me to merely sit in my seat and stare. Instead, while I watch and seek to understand what is happening in the “movie” of life I am simultaneously forced to attempt to find a way to actually act and interact with all the film’s distant cast members - those who play out their parts on the other side of that visual veil.  Striving with all my might to act with and as those thespians on the other side of the veil, the hard truth is I never really seem to get through that veil.  I never really seem to connect.  I never really seem to enter that world.  I never really seem to even truly leave my seat.  Yet, I must pretend that I do if I am to fit in to this world.  It is harrowing!

As these examples portray, I believe that, for the autistic, physical life is always “frayed”, “veiled”,  and disconnected to some degree - causing it to never really seem “real” and causing us to rarely seem a true part of it.  It's a frustrating place within which to exist.

Now, transpose both of those scenarios of trying to truly connect with people in the realm of physical existence into trying to connect to anything in the realm of spiritual existence!  If that which is tangible is such a struggle, how much more that which is intangible?  If the seen is full of static, how much more the unseen? 

The disconnect is daunting.  No wonder those of us who live with autism are said to be only 11% as likely to believe in God as our neuro-typical counterparts!!

With those explanatory portraits given, let me continue with the tale of my own autistic diagnosis.  I began to meet with a very seasoned biblical counselor regarding these deep, dogging doubts I've described. For several weeks she unpacked, data gathered, poked, pressed, and prodded me on every issue imaginable.   She was a brilliant investigator, leaving no stone  of my life unturned and examining every detail in "Sherlockian" fashion! 

What she came to realize was that my form of faltering faith, while still at times sinful, was very different from anything she had dealt with in 20+ years of clinical experience. What she also came to realize was that there was much more going on with me than the presenting problem of bludgeoning unbelief.  

After four weeks of not only scratching the surface but bringing in the back hoe of excavation upon my life, she posed the possibility of my being on the autism spectrum. It was a conclusion she preliminarily based on her discovery of my history of external autistic behaviors, internal autistic manifestations, and areas of extreme giftedness that seemed to flow from the positive aspects of an autistic mind.  I'll break those down in greater detail as I answer other questions in this interview, but for now, let me simply say, I was forced to stare down a shadowy beast that I'd been trying to outrun for decades. 

I must admit, I didn't like what she'd said to me that day in her office.   I didn't like it at all!! 

How could it be?

How could something like this have been missed for so many years? 

I fought against her preliminary diagnosis tooth and nail, coming up in a matter of moments with my own version of the 95 theses on “Why Lori Sealy Cannot Possibly Be Autistic and Why My Christian Counselor Must Be Smoking Crack!!”  

I retorted that there was nothing about my life that fit into (my improperly assumed notions of) what autism looked like. (Which resembled all things Rain Man!)  Yet, deep down inside, I knew that everything about my life fit perfectly into that template and that this diagnosis answered all the questions that I'd not even wanted to really examine about myself.

Since that counselor's initial analysis was presented we have gone the further steps of having my case looked at by other official diagnosticians (psychologists, neurologists, MDs, and members of the Autism Society).  They have validated her diagnosis and I have finally cried uncle in agreement with them due to the overwhelming empirical evidence. 

By grace, I am learning to sing with the psalmist that "I am fearfully and wonderfully made" and am ever pleading with God, even on the dark days of this disability, that "my soul would know it very well!" 

Click here for Part 2 "AN OVERVIEW OF AUTISM AS IT MANIFESTS IN ME"


12 comments:

  1. Wow! Looking forward to reading all of this. Thanks for your vulnerability.

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    1. Thanks for taking the time to read!

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  2. Wow! Wow! Wow! And did I say Wow? I've read the first three parts and can't wait for the fourth. Lori, there is SUCH a need for this!!! Our family has looked and looked for Christian insights on autism and can't find much at all. Joni and Friends has had some helpful things, but I haven't seen anything from the perspective of an actual Christian who lives with autism. There is so muh helpful stuff in here. Your personal descriptions of the sensory were so so so helpful. I hope people are reading this. I hope lots of people are reading this. Thank you. I will be sharing this with my friends!

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    1. Thanks, Elisabeth. Joni and Friends does have some wonderful things available. I am a big fan of there's and will actually be leading worship and doing a concert for their "Accessible Kingdom Conference" in Birmingham this coming November. It is co-sponsored by Mission to North America's Special Needs Ministry Group. Both organizations are top notch!!

      Thank so much for taking the time to read. I am thankful you've benefited. Soli Deo Gloria!

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  3. Lori,
    Thanks for your transparency here. I didn't understand what our friend's children with autism were going through.
    Now I am thinking of ways that I can be more loving,yet sensitive to them.(Maybe no hugs:))
    Thank you for sharing your experience and insight.
    With love from the Shimodas

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    1. Hi there, Laurie!! Thank you for reading and thank you for thinking about how to apply this to those around you who endure it. Love you guys!! Would love to get caught up sometime!

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  4. Lori - I have read this entire interview several times and have sent it out to everyone I know. Our church has had several families with autism come thourhg the doors and the walk right back out the doors. I don't think we showed much real compassion to them and I know, after reading through this interview, that we never offered an real help to them. Thank you for convicting me of my need to understand and to find a way to come alongside those who live with autism. I have already written one of the families, they aren't back in church anywhere, and have asked them to forgive me for my part in not loving them like God does. I am praying that I can correct some of that and am praying that your blog helps a lot of other families. Thank you so much. I can't tell you enough what a benefit this all is.

    Love to you,
    June

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    1. Hello June.

      Thank you for writing and for reading. I am so encouraged that you are reaching out to a family that you believe may have been wounded amidst this battle. Thanks for caring for them. May Christ use you as a balm to their souls!! Much love, Lori

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  5. I am so happy to have found this series. I found it through Mundane Faithfulness today. My best friend's son has autism and I have seen just how hard it is for them. They fight so much embarrassment and misunderstanding. It is hard for me to know how to help but I want to. Thank you for sharing your story with us. Your descriptions have really been eye opening to me. Can't wait to read the other sections.

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    1. Hi Terral - so glad you stumbled across the interview through Kara's site. Thank you for noticing your friends' struggles and for wanting to help them. I do hope that some of this information strengthens you to do so. Praying now that God (and your friend) will give you wisdom as you seek to serve!! Thanks for visiting the site!!

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  6. I also just learned of this through Kara Tippets "Mundane Faithfulness". My 10 year old son has autism. We have experienced some very loving care from our church; it has been more difficult with friends and family. I'm just beginning to read your sections and like others I am SO SO grateful for this! Thank you!

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    1. Hi Kerry - I am thrilled to hear that your church is loving you through this. Those testimonies are always such an encouragement to my own heart. I'm pausing to pray, even now, that you might find equal encouragement and understanding from others! This trial can be so treacherous - what would we do without our Savior? I pray that my feeble attempt to express some of the reality of what God has given to me/us will be of help and encouragement to you. May Christ keep you as you walk the path he has carved for you!!

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