Large Scale Central

Autism/Asperger's Syndrome Awareness

General Discussion
#1

Large Scale Central Family,

I have a soft spot for peoples with disabilities. I have many members of my immediate family that have a disability of some sort. My Large Scale Central family is no exception. Our Mike Toney has Asperger’s Syndrome and is on the high side of the functioning scale. However as one ends up lower in the scale Autism and Asperger’s can be severely debilitating. Some of the effects of the syndrome are easily becoming overwhelmed by outside stimuli and an inability to cope with it in rational calm ways. Often times people can lose control and react violently in sever cases. At the very least it makes it difficult to interact with others in typical social settings. One of the therapeutic measures that is taken to is to remove oneself and engage in an activity that one can lose themselves in until they recover. I think we can all relate to this.

For Mike that therapy includes trains. He has been very open with me and I have asked him to share with us how trains help him. As part of his working through this disease he is involved in Autism awareness. He has already told us of his desire to put together a small train and modular that he can take to events to show others families the potential value model railroading has for suffers. This takes money that Mike does not have a lot of. With his limited resources going to treatment he does not have a lot to spend on trains. Especially a specialized one like the Autism Express.

This brings me to my point. Stan Cedarleaf has been very generous in working up the artwork and decals for the Autism express; over one full sheet of complete color graphics. Stan has offered these graphics to Mike for only $100.00. If you have purchased custom decals you know this is a steal. But this will slow Mikes progress down as he has other things he has to purchase. I would like to ask the members of our family here to help support Autism awareness by helping Mike get the decals for this train. A few bucks from a few people can make this happen.

So if you have a few bucks in your train budget and you want to support Autism and the model railroading hobby and Mikes idea to bring the two together send either him or I a PM and we make arraignments.

I want to give Bob a big thank you for allowing me to do this for Mike. I have asked for his support before making this post and he has graciously agreed to allow me to do it.

Thanks.

#2

Devon asked me to share a bit how living on the high functioning side of the spectrum is, and how it relates to trains or any other hobby one can get lost in. I myself went undiagnosed till I was coming up on my 41st birthday. I was adopted as a child so very little was known about my birth family’s medical history. I was very shy as a child, few friends and those that were my friends were only because we shared what I would later call my “special interest” of trains. Throughout my middle and high school years I was severely bulled, beat up on an almost daily basis. This was before having police offices on duty in schools and my problems were just “swept under the rug”. Through out this time, I had quite the model train collection, including several brass HO scale shay logging engines. I mowed yards as a teen and preteen so I had my own spending money. But once on my own, being able to afford much in the way of trains wasn’t possible as much. I bounced from job to job, usualy each ending in what I would later call a meltdown, something that autistics are prone to have. I would get a nice collection built up, then have to sell to keep bills paid. I managed to find a lovely lady and start dating, get married and struggle as she didnt know how to cope with my anger and violent outbursts. Thru seeking a therapist to help our marriage, I got diagnosed with Asperger’s Syndrome in March of 2014. We both started to learn to cope in more healthy ways. The trains and my interest in fixing lawn mowers is credited to me still being here as 1-10 undiagnosed autistics do not make it to my age, usualy commiting suicide at some point. And I can say that I was near that point several times, espicaly in my late teens. Fast forward to today, I am taking an old Kalamazoo passenger train and relettering it for the Autism Express. I plan to take it with me to other garden railways and to shows to run for others to enjoy and raise awareness of the disorder, espicaly among adults. Support and services for adult autistics are slim to none unless your very low functioning. I was just going to use decals and stickers from Ebay, but Devon said to give Stan a shout and see what he could do. I managed to strip off the factory lettering from the Kalamazoo cars, they are the tan/green Union Pacific cars, so I am ready for the new lettering. I do need to find the matching Observation car still, so if someone has that one or sees it for sale cheap, please let me know. I will pull the train with the colorful MCRR 4-4-0 from Kalamazoo that I converted to onboard battery with an RC car battery, gives her about 4-5 hours run time. I am looking for more Kalamzoo stuff as its normaly affordable. I long for live steam and LGB stuff, but after my diagnosis I have had to rethink my whole hobby budget. The trains gives me a place to escape to, a world that is safe and that I understand, where I can recover when I feel overwhelmed. I can just sit for hours and watch the train circle my small garden line, lost in my own little world in my head. This is how I am able to cope with life, working full time as a small engine mechanic, which I love but I am still stressed out and need to relax in my own ways when I get home. I do not mind any questions that anybody has they want to ask. We have 2 decent size Autism Expos here in Indiana, I also plan to run the train at both of these each year. Mike

#3

For those that know nothing of autism and its associated behaviors, there are two primary ones that most all autistics struggle with, those are meltdowns and shutdowns. For myself, a meltdown is much like a young childs temper tantrum. But unlike tantrum, which is to get attention and the child is in control, a meltdown is uncontrolable. I don’t want to be having one no more than you want to see it. My meltdowns can range from a simple hissy fit and stomping my feet in frustation to a full blown violent meltdown where objects get thrown, people get hit and items get broken. Thankfully post diagnosis, I do not have the full blown meltdowns like I used to, the mini hissy fits are more common. A shutdown is much like when a robot is shut off, I have a blank look on my face, I cannot speak and can barely move as my brain is locked up or kind of like a computer rebooting. I wear a wrist medical ID bracelet that states I am autistic for that very reason. When I am overwhelmed, I can and do have shutdowns anywhere, in the middle of a store for instance. Neither is enjoyable to have and once they are over, I normaly want to just sleep for several hours. Sometimes I will have a mix of both, I will get very upset, end up in a ball on the floor, couch or bed crying till I fall asleep. The causes can be stress or any one of several overloads of my senses. I am sensitive to bright lights, loud sounds, certain smells among others. I have to wear sunglasses when around bright lights, a noise canceling headset when around loud sounds such as being at the Nascar race in Indianapolis or a music concert. Both of which I very much enjoy, but I have to take precautions to avoid having a public meltdown/shutdown. You can reseach both Asperger’s, which is now classified as ASD Level 1 or 2 and classic Austim online and thru sites such as Austim Speaks and others. There are many comorbid conditions that come with being autistic, I have seveal as so most others on the spectrum. I encourage others to become better informed about the condition and not be afraid of it, nor really try to cure it. Its part of who I am and who others are. Most all adult autistics do not seek a cure, but understanding and acceptance of society at large. Mike

#4

Thank you Mike,

Autism is an interesting condition in that it effects people in so many different ways and high functioning people are hard to tell that there is anything going on. My nephew is in about the middle. Much of what you describe is true of him as well. It takes courage to be open about it. I appreciate you doing it and helping to raise awareness.

#5

You’re a brave and decent man to let us hear your story, Mike. I learned a lot. Thank you.

#6

And, boy oh boy, would I like to see somebody model the Seiberling house in your town.

edit: hey maybe I’ll give it a shot in about two lifetimes!

#7

That would be a neat model of that huge old house. One way you can tell someone who is autistic but high functioning is lack of eye contact, extremely limited interests, sometimes says things that are not approiate for the situation and lack of social reprocity. I have no idea how to keep a conversation going when its just “small talk”. Only way I am good at conversation is when its about something that is in my narrow field of interest. There many more signs one can pick up on if you suspect someone is on the spectrum. Many more than I can remember or type. Plenty of online info for those that have an interest in learning more. Mike

#8

Well this happened a bit faster than I expected. Thanks to some generous donations I am already pleased to say. . .

Mike you have your decals. I will send Stan the money tonight. Make sure you post us some pictures.

Thanks to those who gave.

#9

Pics and video of it running anywhere I go will get posted. still looking for the UP obeservation car to complete the train, let me know if anybody finds one. Thanks again everybody. mike

#10

Devon Sinsley said:

Well this happened a bit faster than I expected. Thanks to some generous donations I am already pleased to say. . .

Mike you have your decals. I will send Stan the money tonight. Make sure you post us some pictures.

Thanks to those who gave.

Very cool!

#11

I have a yellow Kalamazoo caboose I will donate to the cause. I need to remove the lettering I put on it, but you can have it. Just message me the address.

Lou

#12

Thanks for doing this, Devon.

Mike, I think that you and I had a conversation about this subject, a year or two ago, when I mentioned that model/toy trains seemed to help autistic children. I have a close friend who is raising two autistic boys, a true challenge. He’s brought them over a time or two, and their reaction to the layout is something to behold. They are fascinated, and come out of their shells. No meltdowns while they are here, which their dad says is unheard of.

At shows, I’ve noticed odd kids, kids who are shunned by their peers, but who seem to come alive around the layout. They tell me things about the trains that I don’t know, small details that show they have made an in depth study of the subject. I try to engage them, sometimes I am successful.

#13

My apologies for this posting so late but I was notified this afternoon that this had been posted and I received a phone call from an anonymous donor who took care of the entire amount for the Autism Express decals for Mike. (http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)(http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)

Just 20 minutes later, another payment came into my Pay Pal account for the same amount from money that Devon had raised… Getting paid double is wonderful but… I emailed Devon and have refunded his payment…

My thanks to all who “pitched in” for the very worthwhile project. I can only assume that Mike is more than pleased…

So glad to help, Mike…

#14

This is Large Scale Central and we are all friends!

Outstanding guys!

#15

Yes we did Steve, I have been told that it has something to due structure and order that trains have. They are a common draw for people on the spectrum. I have been drawn to them, both real and model since before I could walk if you ask my mother. Although she says the steam whistle used to scare me when I was very little, was more probably the shrill sound was painfull to me. I was to young for me to remember this on my own, but I do have pics of her holding me at the railway down near Connersville, Indiana, I was probably 3 at the time. Many thanks for the Caboose Lou! It can provide a tail car till I find the actual matching observation car for the passenger train. I still pull my own home made Autism car I made out of a LGB Euro passenger car. I used printed pictures on photo paper glued to the car. Worked ok for a smooth side car, but would have looked odd on a wood side passenger coach, thus the need for Stans decals. Mike

#16

All I can say is wow guys, and a huge thank you!!! For those that still wish to donate or help. I know the 4-4-0 will need fresher axle gears in the future. I am told that current Hartland gears will work. The gears I put in it, while NOS are as old as the engine so I do not know how long they will last or if they will split. I have been watching ebay for the matching Observation coach, no luck so far, plenty of the combine and the occasional coach. Needs to be in the Union Pacific colors to match the 2 cars I have. Also, does anybody have any ideas for cheap/easy to make interiors? These have no seats in them to put people. I know the kids like to see people in the cars as the train runs. Thanks again guys, I am floored that it happened this fast. Mike P.S. Here is a pic of the Observation I am hunting. Along with any other Kalamazoo cars, espicaly the patrotic ones.

#17

As I understand the trend in keeping diagnosis relevant, Autism Spectrum Disorder, (ASD) is incorporating Asperger’s Syndrome and Autism because of the wide range of symptoms and functionality. I’m sure there is more to it but that is all I am comfortable expressing in this note.

We consider our Grandson, 13, a poster-boy for early intervention and treatment of ASD. A preemie, he came into this world at 19 oz. A poorly placed ventilator messed up his vocal chords necessitating a tachometry until age 5. At about 18 months he started some social and behavioral changes. In a short time he was diagnosed with ASD. A month later an Easter Seals therapist and a County social worker became his Best Buds. At age 9 or 10, bored waiting for his mother to finish a project, he sat at her desk and wrote down a string of numbers. After some concentration sans paper and pencil he wrote down the product of multiplying that string by a single digit. He maintains a 4.0 GPA with three college prep classes. I shudder to think what might have happened had his parents not gotten the timely help for him and education for themselves.

Eye contact and limited verbal communication may be the hallmarks of ASD, but it can invite stereotype conclusions. Grandson will wear you down telling you of some of his ideas. His mother has him write them down in a book. When we go out for ice cream I have to keep an eye on him otherwise he will interrupt a customer at the counter and coach him or her and what flavors to choose. Or he will engage the counter person and have 2-3 customers waiting to place their order.

Bill Gebhardt

#18

Well, I for one, am surprised to see Union Pacific green! I had assumed they were yellow, so I offered the yellow caboose.

I had left over seats from my MP-54 bash, so I will include them with the caboose. It’s up to you to make the pieces fit.

#19

Thank you all for the detailed explanations. We have a Son-In-Law and a grandson diagnosed with ADHD, the younger brother we will have to see. Now I understand Dad’s seemingly short attention span and why he is always staring at his phone. I will try to be more understanding.

When we took the 2 grandkids to a train show in Atlanta, I figured they were just enjoying the trains, but now I look on that experience with fresh eyes.

#20

ADHD is a common missdiagnosis in children that end up rediagnosed with ASD later on when they mature enough that the symptoms become more defined. I would have probably been diagnosed ADHD when I was a child had my parents had me evaluated. If you go look at all the comorbid conditions that accompany ASD disorders, ADHD is there along with many others. When you talk to pretty much any adult that is on the spectrum, they do not want cured, they want understanding and support. That is all I want. I have things in place incase something happens to my wife, a trustee to help me take care of bills and money management and others thru my therapist that check on me to make sure I am ok and if I need anything. For now my wife takes care of all that, but if something happens to her, I will need the support to live on my own successfully. Mike