I dont mind talking about it these days, at one time I did though. Tac is right, its not a disease but a disablity. It cannot be cured or prevented at this time. It occurs in the womb before your born. Its not caused by immunzations but other enviromental factors pre birth that the mother is exposed to could contribute, studies and research continue as the rates of children born on the spectrum are increasing. Those of us on the spectrum often feel like we are on the wrong planet. Many times we can socialize amoung others with the same disablity but totaly flop when it comes to socializing with those that are NT (neurotypical). Feel free to ask me any questions that you may have about AS, I will try to answer the best I can. Mike
tac Foley said:
Devon, Aspergers is not a disease, it is a syndrome -
Tac,
Thank you for the corrections. I know better. Have been around it the majority of my life and i actually am amazed I refered to it that way.
Mike Toney said:
Tac is right, its not a disease but a disablity. It cannot be cured or prevented at this time.
those that are NT (neurotypical).
Mike,
As with Tom thanks for the correction. It is an important distinction between disease and disability. You no more contracted it than my wife contracted being hearing impared.
Also thank you for the proper term for those without AS. I was struggling and hate the word “normal” as there is no such thing. Neurotypical is a much more accurate discription.
I am astounded by the different variations of this disability. My nephew is socially very low level. Even mentally he is about 11 or 12 (He is 18). But he is a rock star in math and chemistry. Once they figured out how to get it out of his head he is well beyond his years. He has an excellent staff of teachers that challenge him in those areas. In high school he is in special ed yet is working at the very highest leves in Math as anyone in that school.
I also had a very close friend that was very high on the spectrum and he graduated at 16 had his master by 21 his doctroate by 25 and retired from the aerospace industry by our 20th reunion a millionare.
The disability is truly strange in how it is so radically different in how it presents. Yet many of the signs you listed are true of most I have had the experinece in working with.
And to keep this on topic I took my nephew Sunday to what the BNSF trains in the yard in spokane and he was totally uninterested. But I did find out he loves airplanes and robots.
“Normal,” is just a setting on the clothes dryer. (http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-tongue-out.gif)
Steve Featherkile said:
“Normal,” is just a setting on the clothes dryer. (http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-tongue-out.gif)
lol,
Thats about right
One of the last yrs show memories was a mother and son that attended both days. Her son is autistic and very attracted to the model trains. I did not notice them first thing day one, but they were there second day first thing so he could easily get a closer look without being bumped round by the crowd (like us when we prefer a time to take our stills and vids, before the attendees get thicker).
She acknowledged (our) train show was ideal for him and also cheap indoor entertainment.
She gave him space but also kept a close eye on him as any parent would (or should, as there do seem too many ‘normal’ kids/parents who think they are allowed to do whatever).
There were 3-4 other similiar family units that I personally noticed but this one for both days.
Oh and there was one young exhibitor with his layout, who was afflicted with something similiar that involved a canine aid. It was fantastic to see them able to interact with the public, and to show the masses that all peoples (and of all ages/abilities) can be involved in the hobby !
doug c
p.s. it wasn’t the autistic that transplanted lego from the interactive displays to the g-gauge and other (small) scale display tracks a few times over the 2 days !
Dave Marconi said:
Thank you Steve. This might just cause me to adjust my expenditures at the ECLSTS this year
And it did. Thomas arrived last week and was set up today, much to the delight of my grandson. Smiles lit up the day and except for a small incident of pushing Annie to make the train go faster everything went along great. And yes he is being allowed to handle the train and to control it.
I keep a small loop of LGB track to take to my parents house at the holidays for my sisters children. They love watching the train run as much as I do. I applaud this forum bring up this topic. So many have no idea about Aspergers and the challenges those with it face. So have it so lightly that on the surface its invisable, or like myself, are much further into the spectrum with it profoundly affecting my daily life. The trains are my means of coping with life’s stresses, a world I can escape into when the real world becomes overwhelming (which is pretty much daily). Mike
I had forgotten this topic and I m glad it got resurrected. While on my trip to St Paul we road Amtrak. On our return trip we had the entire spectrum of the human condition. We had seemingly affluent people, single moms with their children (an assumption), young people, old people, young families, even an Amish/Mennonite family. But we also had a gentleman that I suspect was somewhere on the spectrum with aspergers/autism. Fairly well down the spectrum but functional enough to be on his own. He was on the train when we got on and and he was still on it when we got off. enjoyed watching him interact with others and the staff of Amtrak. He got along well and people treated him with respect and dignity. the Amtrak people seemed keenly in tune to his needs and in all his trip was as “normal” as the rest of ours. Having a nephew on the spectrum and having worked with other children on the spectrum has really enlightened me to the special nature of the disorder. It is not like any other form of disability.
Devon, it most certainly is not. I have three grandchildren, 10-6 and 3, each at differing levels. The 10 year old is fairly high functioning. The 6 year old is difficult at best, and the three year old is non-speach - a real hand full. And with the oldest, 13, his picture right there in the encyclopedia when you look up ADHD, I have no idea how my daughter keeps her sanity. Her home is total chaos from the minute they open their eyes until they close them at the end of the day. My wife and I are tested to the limits at holidays when they are all here, but we manage and still love them all the same.
I love your avatar pic Bob, from one of my fav movies Das Boot! Thankfully I am fairly high functioning but have my days that I am a total basket case. Several of the comorbid conditions that accompany Aspergers I am blessed with. Since my diagnosis just over a year ago I have been able, with professional help, get some control over my violent meltdowns and am working on keeping my self out of the deep shutdowns that tend to catch me off guard. Mike
Bob,
I laugh with you as you describe your daughters chaotic life. Some very good friends of mine, the people who inspired me to get into disability ministry, have quite the story. They decided to foster for young children. All from the same mother but three different fathers. They had no intention of adopting them. The mother went to jail for prostitution, drugs, and driving impaired; a real piece of work. They knew something was off with the oldest but had no idea about the other three. In the end they adopted all four. Three have aspbergers/autism and the fourth has sever emotional distress. They believe all four are the victims of fetal alcohol/drug syndrome. This family has been through the ringer. Their life is chaotic to say the least but they are such an inspiration, as is your daughter, for doing what it takes to love those kids.
Tell your daughter and son-in-law I love them. I love them for loving those kids.
Adults who are present and on the spectrum? Count me in! I’ve got a lifetime ticket on that ride. (http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)
Devon Sinsley said:
The disability is truly strange in how it is so radically different in how it presents.
Eh, not so strange when you look at it from a miniatures gamer’s point of view - “there’s this chart with 300 possible effects; here, roll this handful of dice and see which 15 effects you get.”
Mike Toney said:
… and once someone that has AS is in meltdown, you cannot and should not try to stop it unless you need to keep the person safe. When that happens, the person has zero control of it and its not a temper tantrum, those are to gain attention. A meltdown is an uncontroled outburst of emotions that have built up. I can say from my side of them, they are not fun and can be quite scarry.
And for the love of God don’t get in the face of the person having one right then and mock and ridicule them for it - that can end up with law enforcement involved.
That is a great tip Forrest. My wife used to get in my face and enable the meltdown to be so much worse, but this was prior to my diagnosis. So many think, espicaly a child, is throwing a temper tantrum to get attention. An autistic meltdown is not for attention, its a response to being overstimulated and overwhelmed by the world around the autistic person. They are not fun, not for attention but are a part of being on the spectrum. Back to the trains, my garden is really taking off quick now that consistant warmer temps have moved in. Cant wait to get my truck back from being repaired so we can finish up getting more rock and some ballest as the track really needs it! Mike
This talk by Dr. Temple Grandin helps understand autism.
Temple Grandin is a really interesting person, well worth reading about her.