Monday, April 28, 2014

Interviewing Autism (A Christian Perspective) - Part 5 - Autism & The Church: Wrap Up, Resources, & Questions From a Parent

Previous Links:
Part 1: Interviewing Autism - "An Introduction to My Life, Conversion, & Diagnosis" 

Part 2: Interviewing Autism - "An Overview of Autsim As It Manifests in Me" 

Part 3: Interviewing Autism -  "The Challenges to & Benefits of Faith as Well as Some Tallk About Tangibles"

Part 4: Interviewing Autism "Autism & The Church : Serving Not Severing"

What are things that Christians and the church should be sensitive to in ministering to autistic people?  I think we’ve touched on quite a few of these things in other questions and therefore trust that some deducing can be done from those answers. There is however, one almost humorous thing that immediately comes to mind - primarily because I hear so many people who live with autism talk about it.
In much of the church culture there is a tendency to greet one another with a big and boisterous bear hug.  While that is a good thing which shows our affection for one another, realize that for many folks with autism it is a physically unsettling nightmare – a real-time, real-life nightmare that can cause great pain to a sensorial affected person with autism!

I’ve chatted with several families recently who have to run “hug interference” for their children with ASD on Sunday mornings in order to spare them from the well-meaning evangelical embrace!!   Just store that away in your autistic sensitivity file folder!

Most of the gals at our church realize that I am not, by nature, a hugger and thus many of them will ask me if they can give me a hug before they actually do it.  That’s very helpful, because I know that I have the freedom to say “no” if I need to and in their asking I am also given the time to prepare myself for the contact if I want it.  Again, it goes back to understanding and communication.  Talk to the folks with autism in your congregation and if they are not able to talk with you, talk with their parents.  Find out what their personal “issues” are and then look for ways to be sensitive to their struggles.


What areas of service do autistic believers enjoy and excel in?  David, the answers here will be as diverse as the people on the spectrum.  Just as there are varieties of gifts among neuro-typicals so there are varieties of gifts among a-typicals.  The same “one body/many members” principle of Romans 12 applies to every person in Christ’s church.  We need to be careful to not presuppose that everyone on the spectrum is of a cookie cutter design.  Having autism doesn’t negate individual personalities or preferences, so the best way to find an honest answer to this question is, once again, to get to know the people who live with autism in your path. Learn their areas of interest and giftedness and then help find ways to plug them into kingdom service.

(Interestingly, as I sit here pounding out these answers at a desk in a public library, there is a young adult male with autism less than 10 feet from me.  He does volunteer work shelving books – because he loves books and because he loves to put things in order. He knows his niche and the library is letting him use it!)


How can the church learn from autistic people and also use their talents and gifts better?  As I’ve stressed in some earlier answers, the best way to learn from people with autism is to get to know and seek to understand people with autism. 

Consider looking into some of the resources that are listed below in order to educate yourself more fully regarding the autistic disorder.  The more you know about autism the less fearful you’ll be about being around autism.  Find ways to spend time with those in your community and congregation who are on the spectrum – regardless of where they fall on the spectrum.  Don’t forget that even the most severely affected person with ASD is still an image bearer of your Father and, by virtue of that,  has a true need and a real desire to connect with people – even if that connecting means nothing more than your sitting in the room with them watching while they stack Legos.  The practice of your presence is one of the best gifts you can give and one of the best ways you can learn.  As you personally learn more about the members of your local body who live with autism, then uncovering ways to help them use their talents and gifts should flow freely as a by-product. 

How can the church help the parents and loved ones of autistic children? This is such an important thing to address.  While I can’t speak specifically for all of the parents of all of the children out there, I do think there are a few very universal things that all families who live with autism would agree on. 

First, autism is physically EXHAUSTING!!  Autism never ends.  Autism never rests.  Autism never takes a break or goes on vacation. Even on the best of days, the weight of the shadowy albatross is upon you – always upon you. 

A simple trip to the grocery store can utterly undo a child.  A family dinner at a local restaurant may send your son under the table to hide from all of the stimuli that is crashing down around him. The park or playing in your own yard may last for 10 minutes before the sun, or the wind, or the squeaking of the chains on the swing causes your little one to want to leave. (Realize the effects that these things also have on the siblings of children with ASD.  They are regular victims of the curses of the malady.  My daughter continually sees family activities cut short because we have to evacuate a situation that seemed like it should be fun due to the angst of autism.)  

Church worship services may be a NIGHTMARE – they’re too loud, they’re too quiet, they’re too busy, they’re too still. Josh is almost 12.  While he's only missed going to church 3 Sundays in his life, he's probably only made it through a dozen worship services in his life, and not many more full Sunday School classes. That hour when our family pauses to corporately praise the God of heaven, all hell breaks loose in my son's soul and psyche.  It is one of the hardest hours of the week for him - and our service is sensorially simple. I have talked to several mom's of children with autism who are in their 20's and 30's who have yet to make it into the worship service (which means many of their parents have rarely done so either).

Attempting to academically educate the child on the spectrum can make the parent want to join their offspring in head hitting!  If you homeschool, you are facing the pendulumatic moments of autism 24/7 and are continually having to re-calibrate methods of instruction all the while simultaneously maintaining structure and order which the autistic child so desperately needs.  If you choose public or private education you have IEP plans to devise, constant readjustments of coping and calming procedures in order to help your son or daughter handle the stressors of the school environment, as well as classmates (and teachers) to educate about your child.  On and on it goes.  

Many families have constant sleep battles with their children and have to always be on the alert for a youngster who may just wander out the door and off to who knows where searching for who knows what. 

Most days, my middle school aged Josh must be humbly "herded" through the routine activities of life: eating his food, taking his shower, putting on each article of clothing, brushing his teeth, putting on his shoes, tying them, picking up his book bag, walking out the door, getting in the car, buckling his seatbelt, ad nauseaum. Without that herding he would end up standing and staring at who knows what for an hour, not having any concept that an hour had passed. Even with that herding we must work hard to help him hear and connect to the command.  (Please understand that in this I am not speaking of moments of stubbornness or rebellion, though those do occur.  In this situation I am speaking about that frayed wire reality that disconnects my son from even the most mundane and habitual seeming of activities.)

Add to that the fact that the child with autism often doesn’t truly know how to express to their mom or dad what is going on inside or know how to truly show affection to them.  Parents are often worn out simply from longing to know a child that seems so unknowable. 

AUTISM!  IS!  EXHAUSTING!

Recognize that this exhaustion factor is a deep reality in the families you know who have children with autism.  Look for ways to offer respite to them. Take them a meal.  See if you can pick up something for them from the grocery store so they don’t have to drag their child into the war zone!  Ask to watch the kids so that mom and dad can have a date, or so that the single mom (the one who is going this all alone) can just sit down to a quiet meal with or without a friend.  Find out HOW to watch the kids – find out if there are triggers that may set off the child and calmers that may help settle him or her. Let the parents know that you understand that their child struggles and aren’t going to judge them because of those struggles. (Often, as the parents of children with ASD, it is hard for us to ask you to watch our kids because we know what may be coming when you do and most of us have endured far too many lectures on how we’re failing as parents from well-meaning friends who assume that we’ve been slack in doling out the discipline.) Again, being serious about wanting to understand autism is so important in this.

Second, autism is emotionally EXHAUSTING!  Now, there is a sense in which this fact has already been addressed in the previous paragraph because all of those aforementioned physical realities have a deep emotional affect on caregivers.  However, I want to address a different realm of emotional exhaustion that I believe is of utmost importance for you to understand. 

When we received our son Joshua’s diagnosis (he was 8) there was a moment of stunning numbness for us.  

“Is this a good thing?” 

“Is this a bad thing?” 

“Wow, this answers all those questions about him.” 

“Whoa, this raises a lot more questions about him!”

We didn’t know if we were supposed to clap our hands off or cry our eyes out. 

As we began to process the information and as we were forced to survey the new landscape of our life, Phillip and I went through a real grieving process.  (Phillip did more so than I, probably because he is neuro-typical .)  Suddenly, this child who everyone had viewed as amazingly brilliant, though slightly quirky, had a label - and that label had some pretty significant disabilities attached to it, which seemed to now be shrouding his many abilities.

The things we had once assumed he would just “grow out of” as he grew up, turned out to be things that would be hard truths about him, probably throughout his life.  All parents have dreams for their children and a diagnosis of autism slays many of those dreams. Right or wrong, that is a fact that we see faced by almost every parent of a child with autism whom we know. 

The difficult diagnosis triggered some mild depression in Phillip.  We now know that he was going through a very real season of grief and mourning for our son – a season that almost all of the resources for parents of children with ASD say will occur and a season that we have heard 100% agreement with from every autistic family we know.

Sadly, as Phillip sought to grieve openly and as he began to weep openly he found his tears misunderstood and criticized by many other Christian men (particularly other pastors and elders) and instead of being built up by them, he found himself cut off by them.  Some said, “Just buck up buddy!”, while others stopped saying anything at all. 

We lost long time ministry friends during our grieving season and almost lost our call as church planters.  Those reactions made it difficult for both of us to talk honestly about the hardships of autism for several months.  Over the course of the past year, we have found that this same scenario has happened time and time again to other Christian parents – many (as referenced earlier) who no longer attend Christ’s church because of it.

So, how can you help with the emotional exhaustion? 

I think the simplest and yet most profound answer is love and listen. 

Be there for your brother.  Sit with your sister. Let them cry.  Let them weep. Hand them a Kleenex – buy them a box!  Let them have their period of mourning. Job’s friends did fine until they opened their mouths and started spewing forth their own form of words without knowledge.  They assumed a lot about their brother Job – and they assumed wrongly!  They speculated.  They judged his motives. They misinterpreted his actions.  They were quantumly quick to speak.  They were stagnantly slow to listen.  They didn’t love Job – not as Jesus loved Job. 

Here was a bruised reed and by their actions they broke it.  Here was a flickering flame and they were puckering their lips to blow it out.  Righteous Job wept – and for quite a period he did that without sin.  It takes 42 chapters before we see Job smile and that volume of sorrow goes right along with the fact that there are more Psalms of lament than there are Psalms of celebration. 

Our own sinless Savior wept at the death of a loved one and at the effects of the fall upon Jerusalem.  All of these things tell us, as does Solomon, that “there is a time to weep.”

As the ambassadors of Christ we must seek to be more like the gracious God who “stores all of our tears in His bottle” than like Job’s impatient friends who considered his sorrow sin and sought to rid him of it!  Be willing to “weep with those who weep” and “mourn with those who mourn” and in so doing, you’ll have much more of an opportunity to reap the benefit of rejoicing with those who see their sorrows turned to songs!


What books or websites could you recommend to Christians wishing to understand, reach out to, and care for autistics?  One of the first things I recommend to folks wanting to understand autism more fully is the movie “Temple Grandin.”  It is the biographical story of Dr. Temple Grandin who is an autistic and whose spectrum gifts allowed her to almost single-handedly upgrade the cattle industry’s slaughter methods for beef production.  The movie, produced by HBO, is engaging and entertaining (it even won an Emmy). It probably gives the best cinematic picture of what it is like to see life through the eyes of a person with autism. It is available through Netflix and most other major movie distribution sites. 

The ministry of Joni and Friends (joniandfriends.org) has some wonderful resources available regarding autism, including a 2 part series called “Making Sense of Autism.”  That series is actually available to watch on line.  They also have a book called “Autism and the Church” which seeks to explain the syndrome as well as offer practical advice to churches on how to minister to those affected. 

My own denomination has a wonderful Special Needs Ministry (www,pcamna.org/special-needs/)co-ordinated by my good friend Stephanie Hubach. The ministry itself provides resources, training, and even consultation to churches seeking to improve their ministries to those living with disabilities. Stephanie has authored a fantastic book titled: Same Lake, Different Boat which is a wonderful tome to challenge us to think biblically about disability.  I can’t recommend it highly enough.

Dr. Michael Emlet, of CCEF, has written probably the most succinct and practical pamphlet I have ever read on Asperger’s syndrome, aptly titled Asperger Syndrome.  It gives some great bullets points on what Asperger’s is, and Dr. Emlet does an excellent job of viewing it all through the lens of God and His gospel.

Dr. Tony Atwood’s book, The Complete Guide To Asperger's Syndrome is the Asperger’s focused reference book to top all Asperger’s focused reference books.  It is an understandable and practical read that doesn’t get bogged down in the medical terms which no one can comprehend.  Dr. Atwood also has a section, much neglected by many other specialists, on the female and Asperger’s.  There are some amazing differences in the manifestation of high-functioning autism between boys and girls, which is one of the reasons that girls are often not properly diagnosed and therefore often go without getting real help.


Lori, the next two questions are from someone with an autistic child who read on your blog that you also have a child with autism.  She asks:

1.  Having autism yourself, how are you raising your autistic son differently, if at all, than a parent without autism might be?  I hope that in the overall picture I am raising my son in the same ways that all Christian parents are seeking to – “in the fear and admonition of the Lord”, under the counsel of His Word, and according to the grace of His gospel.  The same sinful heart issues that plague all children plague my son.  I regularly remind him that autism is no excuse for sin – it may cause him to be more easily tempted in certain areas – but it doesn’t make it OK for him to ignore God’s commands.  My Josh needs the same gentle admonitions to flee to Christ as my Elizabeth does and I need to press those things home to my kids as their autistic mom just as Phillip needs to as their neuro-typical dad.

I think perhaps one of the real positives of being the autistic parent of an autistic child, is that, to a degree, I “get” Josh.  I can often figure out things that are triggering him and can often understand his angst.  At times I am able to help give understanding to others about him that he isn’t able to express about himself.  In the past couple of months he has begun to open the doors of communication regarding how things “feel” inside – an exciting thing!  As he talks to me about his experience I am able to connect with him due to my own, and that is a great blessing.

2. As a parent of a child with autism, how much time and energy should be put into trying to make our child/ren 'fit in' with typical children, or should we work more on developing the child's own strengths. How does that play out when they become an adult?  This is a question that I almost like, but there are several things in the way that it is posed that unsettle me a bit.  Let me see if I can break it down for you.

I’m not certain that it is proper to lay out a particular amount of time or a specific level of energetic exertion regarding the development of our child’s strengths or in the attempt to aid them in “fitting” in with neuro-typicals.  We must live life within the confines of the 24 hour periods that God provides and in light of the providence His hand ordains within those periods.  I can’t determine how much time anything takes with Josh (one day he’s super-sonic and the next day he’s a slo-mo slug in the exact same scenario!) I simply have to strive to faithfully use the time that God has given, in the way that He has given, and pray that He would grant me the wisdom to make the best use of every moment. 

As for energy, I’m often running on fumes and have no idea how I keep going, apart from the imputed strength of Christ to supply me with everything I need for the task.  I would encourage this dear mom to not look so much at laying out a specific amount of time –i.e., “I must spend 4 hours a week training my child with ASD to look neuro-typical children in the eyes and successfully share his Hot Wheels with them without having a meltdown!” as much as I would encourage her to simply find ways to get together with families, both neuro-typical and a-typical and walk in the teaching opportunities that naturally flow from those.

As for trying to make our children “fit in” with typical peers versus helping them develop their own strengths, well, I’m not very keen on the use of the phrase “fit in.”  Josh is never going to “be” like his neuro-typical pals – he is different.  He knows it.  They know it.  Our desire is not to force square peg Josh to fit in to the round hole mold of neuro-typical people. Our goal is to see Josh learn how to contentedly co-exist and properly interact with those who are different from him, thus becoming who God would have him to be in the world where God has placed him.  Working on building up the areas where Josh is socially weak is a priority.  Increasing the areas where Josh is naturally strong or gifted is an equal priority.  The two are in no way exclusive and should stand in beautiful harmony with one another.    

I think, if possible due to the level of disability, we must be cautious to not isolate our children on “Autism Island.”  One day we will no longer be with them.  One of my main prayers for Josh (outside of seeing Him grow in the grace and truth of Christ) is to see him become somewhat self-sufficient and to be able to hold his own in this world.  I know that in my own circumstances, the fact that I had to figure out ways to survive in this strangely foreign field where I exist, while terribly difficult, was also the means to move me to the seemingly high-functioning place where I now live. 

Temple Grandin’s mom (referenced in the resources section) was committed to not seeing her daughter institutionalized in a time period where pretty much all people with autism were simply locked up in a padded cell.  Her efforts to integrate Temple into society, all the while continuing to acknowledge and acquiesce to the real disabilities of her daughter, are without any doubt the main reason that Temple Grandin is now Dr. Temple Grandin and why Dr. Temple Grandin has been able to make such a profound impact on so much of the world’s understanding of autism. 

As I come to a close in answering these questions, I want this mom to know that I understand how challenging this journey is that she is on.  Knowing that, I have just paused to pray for her and for her family and would encourage her to “not grow weary in well-doing.”  But I also know that she will grow weary because living with autism is hard, and so on those days when she does find herself falling through the floor of fatigue,  may she  know that underneath her are the Everlasting Arms. 
They will catch her,


     they will keep her,
          and they will do the same for her child
               even as they do for me and mine!!

_________________________

If you have enjoyed this series, you might also have interest in these posts:



15 comments:

  1. What an absolute blessing this has been. Thank you for the time you've taken to answer these questions. Thank you for the willingness to be so vulnerable. I needed this. I hope others are drinking it in.

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    1. Thanks you, Shelley. Thank you for reading, for writing, and for caring about this issue!!

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  2. This has been a very helpful series. My son lives with autism. Your words on how the church can help parents are spot on. And your final reminder to the mom in that last question was just wat I needed to hear this morning.

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    1. Press on, dear Robin!! Thanks for writing.

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  3. I work with those struggling with autism. Mainly I work with adolescent males, priamarily those in the Aspergers camp. So many of these young men doubt the existence of God and don't care much for organized religion (at least not as they've experienced it and I can't say that I blame them). I think much of the church is failing miserably in this area. (The conservative church much more than the liberal branches.) It shouldn't be. Thank you for your insights. I am gleaning much from them, echo the importance of them and hope a lot of us grow because of them. Thanks, Lori. Cynthia

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    1. Hi Cynthia,

      Thanks for your labors for those living with autism. I agree with you that the church is not doing as well as it could on this. Just recently I had a conversation with a gentlemen whose church has three people with special needs (he referred to them with the "r" word) in the congregation. His thought was that these folks needed to be hidden away because they were a disruption to worship and a hindrance to the church's growth. It was a painful conversation. I realize that his position is a rare one - but sadly it is one. I think the majority of the church's failings in this area simply fall from not understanding and not knowing what to do. I pray that something in here will serve as a catalyst for compassion and an idea for action. May you not grow weary in your own labors!!

      By grace,
      Lori

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  4. Oh my goodness. This has been such a helpful thing for me. I have passed it along to several in my family because we have a loved one on the spectrum - my nephew. He has a hard time with belief and church has always been so hard for him. His parents are have such a hard time trying to understand. I have read a lot of Temple Grandin's works but suddenly feel like I've run across the Christian version. I so very much appreciate you pouring your heart out like you have. Praying fo ryou and for your family Lori. Much love,, Barbara

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    1. Oh Barbara - I do hope this will be an encouragement to those in your family. Thank you for your prayers!!

      By grace alone,
      Lori

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  5. Jennifer RalstonMay 27, 2014 at 9:43 PM

    Thank you for such a well-written, heart revealing, practical, and Christ centered series!

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    1. Gladly. I do pray it is of benefit.

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  7. Lori, are you familiar with Elizabeth Prata? I just discovered her and she is an autistic Christian who has a blog where she has recently talked about her story. I think you would find it interesting and would love to see you two meet. A friend introduced me to your interview and it has been such a blessing to me as the parent of an adult autistic who struggles a lot with the ideas of faith. Thank you for sharing your story with us. I think if you google Elizabeth Prata you'll be able to find her blog.

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  8. Thank you for an insightful series.

    I am late to the party because I have only just been diagnosed my self. I will be sure to refer back to your writing.

    I'm no blogging about my journey too at www.edgyspirit.com I would like the church to be more accessible to those on the spectrum.

    I have found that one of the hardest things about church is the way it seems to see its self in relational and emotional terms.

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  9. As Nana to an almost 5 year old "mildly" autistic grandson, I appreciate your openness and honesty about being both autistic and having an autistic child. Thank you for those extra resources you provided as well. I could say more, but will simple summarize my thoughts in this: Your ministry is touching more lives than you will ever know this side of heaven. I am grateful.

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