Friday, March 31, 2017

Shining a Light onto Autism

Thought for the day: We need to embrace those who are different, and the bullies need to be the ones who get off the bus. [Caren Zucker]

[wikipedia]
April 2 is World Autism Awareness Day, and in the U.S., the entire month of April is National Autism Awareness month. Since I'll be taking my customary month-long break from blogging in April, now's my best opportunity to post about this important issue.

I think, as a whole, most of us are much more aware of autism today than we used to be, and many of us know someone personally who is somewhere on the autistic spectrum. Autistic people are... different. They view the world differently, and they are also different from each other. There's a wide range of behavior and perceptions within the spectrum, and above all, what autistic people crave is to be accepted just as they are. 

The following post is an update of one that first appeared on April 8, 2011, with the title Understanding Autism: A Long Way to Go. At the end of the post, you'll find information about a book I read recently. Why am I telling you about it now? All proceeds from book sales will be donated to autism research.

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Thought for the dayI've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back.  Maya Angelou

Today's blog is going to be a little different. It's going to be about some people who are different, and I hope to help you gain a better understanding of them.

April is Autism Awareness Month, and with statistics showing that autism currently affects anywhere from one in 120 to one in 150 of the babies born in the US, you may already know one of these children ... or adults ... personally. In any case, in honor of autism awareness, I'd like to share a few things about this brain disorder with you, based solely on what I've learned from books and personal observations.

When I was growing up, I don't remember hearing anything about autism. In those days, children with special needs were lumped together in a special education classroom at school, or relegated to the mercies of a state facility.

In the late 60s, I briefly volunteered at one of those state facilities. Caroline, a co-worker and fellow do-gooder, and I were closed into a medium-sized room with 35-40 children. The only furniture in that room was a TV set, which sat on a shelf mounted high up on the wall beyond the reach of little fingers; and the only toys, rubber balls. Lots and lots of rubber balls. All colors, all sizes. And those balls were in constant motion. Rolling around the floor, bouncing off the walls, smacking into the children, smacking into us. Four or five children screamed non-stop. Two spun in circles until they fell to the floor. Then, they'd get up and spin some more. Two others curled on the floor at opposite sides of the room, either in drug-induced stupors, or near-catatonic states brought on by their conditions. Another child banged his head against the wall. Some children, who were incredibly strong, reached for us, and in their enthusiasm, pulled us to the floor.

 In retrospect, it's very likely that some of those children were autistic, but at that time, from what I saw, those children, as wards of the state, were simply being warehoused. All thrown together, regardless of diagnosis, if there even was a diagnosis. From what I learned later, the spinning behavior and general disconnect we observed at that institution are typical manifestations of autism. And all of those balls flying around the room must have been sheer hell for them.

Fast forward ...

During the eighties, I volunteered at our church's respite care program. This was a two-Saturdays-a-month venture, in which parents could get a much-needed respite by leaving their special needs children in our care for the day. Many of these children were autistic, enrolled in a special school, and receiving the best help available. Some of them also had severe physical challenges. But, all in all, they were amazing children, and they taught me a lot about the human spirit.

Autism strikes four times as many boys as girls, so that may explain why we had more boys than girls in our care. I'd like to tell you about one of these boys. His name was Steven.



Steven's body was painfully thin and twisted, and his spindly legs were strapped to a wheelchair. Leather straps buckled around his chest, pinning him in place, and a tray was clamped in front of him.

Unable to speak, he'd make loud guttural noises, shake his head back and forth, and flail his arms. We'd wipe the spittle from his chin, but tears would fill his eyes.

Then, he got an amazing electronic keyboard fitted to the tray of his wheelchair. Teachers showed him how to use it, and boyohboy, he was an amazingly fast learner. And know what? He became calmer. For the first time in his life, he could press a button, and a computer would say, "I'm thirsty!"  or, "I'm hungry!" or simply, "I'm mad!"

And to everyone's delight, we discovered that he had a terrific sense of humor.

Steven taught me, taught all of us, to always look for and remember the person inside. No wonder he was angry! He was trapped inside of a body that didn't work, but his spirit proved to be strong, once he was given a way to express himself.

I recently read a book called The Tell-Tale Brain, by V.S. Ramachandran, which he describes as "a neuroscientist's quest for what makes us human." He accomplishes that by exploring the workings of the human brain, and he also does an excellent job of explaining some of the differences in the autistic brain.

There are specialized neurons in the human brain called mirror-neurons. Say you're watching someone scratch his nose. These mirror-neurons will trigger activity within your brain that's identical to the activity that would be triggered if you were scratching your own nose. You don't actually move your hand to your nose, but at a basic level, you can relate. As you can imagine, these neurons are essential in the development of empathy, and in the formation of connections to the people around us. And there is a stark deficiency of these cells in the autistic brain.

So, without an innate sense of connection, these children, these people, find it very difficult to connect. Often can't look another person in the eyes. Don't want to be touched. Have a sense of isolation. It's been theorized that because of this sense of disconnect and isolation, some of these children inflict wounds upon themselves just to reassure themselves that they're alive. Sensory overload is a major issue. Too much light, too much noise, too much activity are all maddening to an autistic person. Strict routines and a reliably non-changing environment are important. The spectrum of autism is wide, and the degree of functionality and integration into society vary greatly. Great strides have been made in understanding and treating autism, but there is still a long long way to go.

And each of us can help. The more we try to understand, the more empathy we have, and the more acceptance we show for those who are different, the better this world of ours can be. In this, Autism Awareness Month, let us all be more aware of these struggling children, of their parents, often divorced and/or isolated themselves, who care for them, and who know that no matter how different their children may appear to the rest of society, they are also brilliant, creative human beings and a source of great joy.

Every person deserves the chance to reach for their highest hopes and fulfill their greatest potential. [Barack Obama, on World Autism Awareness Day, 2015]

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At right is a cover pic of the book I mentioned earlier in this post. Fifteen authors, who write in a wide range of genres, combined their talents to create this anthology in loving support of autism research. This is a book you can enjoy in bits and pieces, or as a forget-it-I'm-not-moving-until-I-finish-reading-the-whole-darned-book manner. (Closer to my particular style.)

In the U.S., you can purchase this book
here, and it is also available through Amazon in other countries, as well.




Until next time, take care of yourselves. And each other.





67 comments:

  1. Years back I volunteered with a youth group. One of the participants had autism. And was largely shunned because she couldn't connect. Don't we all crave being accepted just as we are? I know I do.
    And I will track down and read your featured book. Thank you.
    Enjoy your month away. You will be missed.

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    1. I don't think people intend to be mean when they shun others who are different. It's mostly because they fear that difference out of ignorance about behaviors they don't understand. The more people learn, the better they can understand and support. The TV show "Sesame Street" is adding an autistic girl puppet to the cast, which I think will go a long way toward helping children understand and accept autistic behavior.

      Thank you. :)

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  2. It's encouraging to know that progress is being made in the understanding of this complicated affliction. Autism has long been given erroneous definitions and has been sorely misunderstood.
    I applaud your work as a volunteer and your empathy for those special people who are "different".

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    1. It is encouraging, and it's especially encouraging that there are so many programs designed to help autistic children develop to their full potential. The more the rest of us understand, the better their lives will be.

      Thanks, but no applause is needed. I loved those kids.

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  3. Hi Susan - I've learnt so much more about autism since I started blogging and since I found this group of bloggers - such an interesting and informative post. We need caring, understanding people, who accept and help us understand the different spectrums of life ... great post - thank you - and enjoy your time away ... Hilary

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    1. Hi, Hilary. I'm glad you enjoyed the post. It's a subject very near and dear to my heart.

      Thanks. I'm looking forward to a month off. HA! "Off." There's a million things I need to do...

      Cheers!

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  4. I know more about autism since I started blogging, several internet friends have autistic children, but I don't know anyone personally in real life who is autistic or has autistic children. so it's still a bit of a mystery to me. I suppose if someone is really well integrated into society, and coping well, it would be hard to tell.

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    1. I don't think you have to know anyone with autism personally to be motivated to learn as much about the affliction as possible, and you're doing that through your blogging connections. That's terrific. You're right; some autistic people can successfully integrate into society, but even then, there are usually certain "tells."

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  5. I know a few people with autistic children. These parents are very strong advocates for their kids and fight everyday for their welfare and future. Early intervention has a definite impact on the quality of life and these moms and dads will go through brick walls (the government) to get the help these children need to reach their highest potential.

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    1. Yes, yes, yes, I agree with everything you said. No mama bears are more tenacious than some parents who are fighting to provide their autistic children with the best life possible. On the other hand, unfortunately, I know of far too many marriages that split up because one of the parents found it easier to retreat than it was to stay and continue the fight.

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  6. That keyboard was a blessing for Steven.
    I'd heard that they do relate a lot of frustration because their bodies don't cooperate with their minds and they feel trapped.
    That room with all those rubber balls. Can you say bad idea?

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    1. You're right; that keyboard was an incredible blessing.

      Those balls were a HORRIBLE idea, but in those days, "care" for those children was more about warehousing them out of the public eye than it was about helping them.

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  7. Definitely more awareness but a long way to go. We shall see how things progess as education budgets are cut further. Excellent post
    Enjoy your month of april

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    1. For sure. I'm really excited that "Sesame Street" has added a new autistic girl puppet to its cast. Teaching young children about autism at such an impressionable age will go a long way toward helping them understand and accept the differences.

      I don't even want to think about how changes in federal budget priorities will affect education, in general, and autistic children, in particular.

      I will. Thanks!

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  8. We're all different...anyone holding themselves up as an example of 'normal' is kidding themselves.

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    1. How true. Who's to judge what qualifies as "normal," anyway?

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  9. Amazing what a difference that keyboard made for him. I know much progress has been made in helping those who have autism, but there is still more to do. Great post! I hope you enjoy your break.

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    1. It was truly amazing was a huge difference that keyboard made in his life.

      Thanks! I'm glad you liked it. I hope you have a super April, too.

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  10. Warehousing them like that would be awful indeed.

    I think it was always around too, maybe not as much, but there and we weren't aware. I've dealt with a few, some hid it so well that you never knew, others pretty much had a fit with anything. Such a wide spectrum indeed.

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    1. It was beyond horrific. The children were all thrown together, regardless of their condition, abilities, or needs. One little girl seemed to have no obvious problems, but she'd been abandoned by her family to become a ward of the state... and that's where they put her.

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  11. What an excellent post, Susan. God bless you for having volunteered and for the work that you did with all those children crowded into a room. That must have been difficult for everyone concerned. I know someone who probably has a fairly mild form of Aspergers. She's very sensitive to noise. If someone yells at her, she tries so hard to block it out that she quite often doesn't know what's been said. She worked very hard in college to develop social skills. She is my daughter.

    Love,
    Janie

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    1. Thank you, Janie. I'm glad you enjoyed the post, and if your daughter has a mild form of Asperger's, you know first-hand about some of the challenges.

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  12. Susan, your post is a welcome lesson in enlightened compassion, and strength. Thank you. Have a great April.

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    1. Thank you for always being so supportive, dude. I'm glad you liked the post. You have a fantabulous April, too.

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  13. Excellent post today. Raising children is so hard and then to have a child with Aspergers seems so even harder.
    I know what it is to have a child with development problems (not Asperges) and how hard it is to try to explain and live with this even 20 years ago. You just stick with it and love them as much as you can.

    cheers, parsnip

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    1. I have nothing but respect for the parents of special needs children. I think God only places these children with extra special, very strong, and loving people. That's why the respite care our church was so important. Otherwise, those parents never had any down time. Ever.

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  14. I remember reading a book a long time ago about autism, before people knew much about it. It was a bout a mom's struggle to help her son. Sad but good.

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    1. There are quite a few good books out about autism now.

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  15. Brilliant post, Susan. What a caring person you are.

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    1. Thank you, Keith. I think everyone would care just as much about these children if they had the opportunity to work with them.

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  16. Lovely!
    So misunderstood, and so little compassion from a world that has so much to offer. I pray that changes, and soon!
    You are a lovely lady!
    Thank you!

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    1. Thank you!

      There have already been a lot of changes, and I'm fairly confident increased compassion and understanding will pave the way to even more changes. For the better, I hope.

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  17. I know two people with children who have Autism. You are right...the Moms are fighting for them like Mama Bears.

    I suspect one of my former bosses has a mild form of Aspergers...he hides it well, but some of what he says and does indicates he might suffer from it.

    Enjoy your month off!

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    1. It's a shame that parents have to fight for their children so they can get them quality care and treatment, but at least some terrific treatments are available for autistic youngsters nowadays.

      Thanks! I'll try... :)

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  18. Really enjoyed this post. On the TV series "St. Elsewhere" one of the doctors had an autistic son. I think that was the first time I was aware of it. Working in a Children's Hospital, I saw how challenging it was to determine medically whether a child did or did not have any of the Autistic Spectral Disorders. Still it doesn't matter. We as human beings should treat our fellow human beings with respect. Tough to unlearn some of our own behaviors but we can try. Each time we learn more about a condition, can help us. Thank you so much for sharing.

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    1. Yeah, I can see how it would be difficult to diagnose a mild case of autism, especially since more savvy parents are seeking help for their children at very young ages. Some children may simply be slower at developing than other children, but they don't have any kind of disorder at all.

      Thanks for stopping by and taking the time to leave a comment.

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  19. Susan this is such an eye-opener.
    What a timely post! It fits with our We Are The World Blogfest which started 31 March. It's a monthly blogfest which aims at spreading good vibes and positivity so as to combat the hate and negativity that's taken over social media and news in recent times.
    I'm posting a link directly to my post in case you want to learn more, and maybe join us in this initiative.
    Thanks for sharing.
    Writer In Transit

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    1. I've heard a lot about that blogfest, and I think it's a terrific idea, but since I only blog once a week... and one of those weeks is the IWSG post, I don't want to join any ongoing fests that would limit my post topic on any given week. However, I'll still continue to include good vibes and positivity in my posts as often as I can. (Negativity sucks!)

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  20. I ejoyed your post so much. I don't really know anyone with autism personally, however, it breaks my heart that people with disabilities feel like they have to hide from the society and that they don't belong. Everyone deserves their place on this earth and just because some people are different, doesn't mean they deserve less.

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    1. Thank you. I'm glad you enjoyed it.

      Your last sentence says it all. Well-said. :)

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  21. I also don't know a person who has autism personally but it was good to read this post. Thank you Susan.

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  22. Love this post, we were both inspired by World Autism Awareness day. Many of us have been checking out your posts,think you are incredible and would love it if you would join us for #WATWB. If you're interested you can get more information and sign up here:https://bwitzenhausen.wordpress.com/we-are-the-world-blogfest-watwb/

    Belinda Witzenhausen~Writer, Creativity Coach & Artist

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    1. Well, thank you. What a sweet thing to say!

      I appreciate the invitation, but like I told Michelle, since I'm only blogging once a week now, I'm hesitant to commit one of those weeks to any specific blogfest. IWSG already claims one week, and I'd like to remain as eclectic as possible with the remaining weeks. I'll continue to write as many positive posts as possible, though. I promise. :) (It's in the nature of the beast.)

      Delete
  23. What a great post. Technology really is a blessing, isn't it? To be able to actually connect with these folks in a manner they understand, rather than just shoving them away in a closet somewhere and shrugging because "something must be wrong with them".

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    1. Thanks. Yeah, in some cases, technology is an amazing blessing. It certainly has been for Steven.

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  24. In the mid-70's I worked (in a clerical capacity) at the Abilene State School - where everywhere from small children to adults were, well, warehoused. Some, depending on his/her aptitude were schooled. Never have I ever witnessed such honest devotion and unconditional love.

    Yes, I know of at least two individuals who have been diagnosed with autism. There's still so much to learn ... if only we listen. Steven's story has really moved me.

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    1. I know what you mean about the devotion and love. I didn't see much evidence of that at the state-run institution in Maryland, but I had the honor of meeting an amazing woman here in Atlanta who ran a care center for special needs children in her home. She was a registered nurse, but when she had a child with special needs, she left her nursing career and devoted her life to children whose families were unable to care for them. There was no doubt she loved each of those children fiercely, and I swear, she had an honest-to-God inner glow that lit up her face like a female Santa Claus. I've never met another person like her.

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  25. Oh my gosh Susan, you made me cry... I wish people were empathetic to others that have disabilities... It definitely starts with us by setting the example and raising our children the same way...

    I remember a made for TV movie in the 70's that was about an autistic boy and how his parents mirrored what he did to be a part of his world... they drew him out of his world. It resonated with me and I never forgot it... it left an impression on me.

    The book looks like it's a very good one, have a great week and enjoy your month off of blogging xox

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    1. Sorry, Launna. I didn't mean to make you cry, but that just shows me you ARE empathetic. (Not that I'm surprised.)

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  26. I want to say a big thanks to Doctor Andre Armstead of USA for helping me cure me of my Brain disease. Brothers and sisters, Nath Luth is my name and I live in Texas USA. Few years ago I had a car accident and my brain was affected I was rushed to the hospital the doctor did his check and said I don’t have any internal injury in my brain but just that I was emotionally fragmented and for that reason I lost memory of what happened. But sometimes I sleep at night and I see in dream how I got the accident. But when dawn if am asked how it happened, I can’t say it. It continued like that and I found myself very forgetful. Doctor gave me medicines like Diuretics, Anti-seizure drugs, Coma-inducing drugs, to some extents the drugs helped but later on it stop helping me and as a result of this, I was fully diagnosed of schizophrenia (Brain Disease). Doctor said my problem was same with a variety of brain disease like salience syndrome, Psychosis, susceptibility syndrome, Asperger's Syndrome, Lemierre syndrome, Stevens Johnson Syndrome, Steele-Richardson-Olszewski syndrome, vascular dementia, CJD, mad cow disease, PTSD, encephalitis, panic disorder, OCD, ADD and a lot more. So i and my family became very afraid because doctor said I would die with it. My Immediate younger brother is an ICT officer he is always on the internet. So he came home and said he read about a herbal doctor called Doctor Andre Armstead who have used his herbal medicine to cure so many people of various diseases. So he copied out the contact details of the Dr and he contacted him. He emailed him, and explained to him what I was passing through but Dr Andre promised him that he will cure me of my brain disease and I will be totally cured for life. So he made the arrangement with Dr Andre, and he prepared the herbs from Washington and shipped it to us in Texas. So I followed his instructions on how to take it and behold it worked for me just like a magic, and totally cured me of my long suffered brain disease, and today I am totally cured of my brain disease. Please if you are out there suffering from any kind of brain disease, or you know someone suffering from it, I urge you to contact Dr Andre immediately and get your cure. His contact details are (doctorandreaarmstead@gmail.com) and his phone number is +1 (617) 663-8926, Thanks.

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    1. Hi, Nath. Thanks for taking the time to share your story. I'm very happy this doctor was able to make such a huge difference in your life. May you enjoy continued good health for many more years to come.

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  27. Hello Susan - I've just come across from Delores blog (only slightly confused)

    An excellent post.
    Yes, we do need caring, understanding people, who accept and help us to understand the different spectrums of life, and people's experience of it.

    I hope you enjoy your time away

    All the best Jan

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    1. Hi-ya, Jan.

      Thanks so much for stopping by and taking the time to leave a comment. I do appreciate it.

      I'm glad you enjoyed the post. I think there's a lot more caring and understanding people in the world than there are the... other kind. We just have to find our voice and drown out ... those other... voices.

      Take care. :)

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  28. You know, there seems to be a higher number of autistic children in Florida than other places I've been. Maybe I just notice them more? Whatever the case, it's a strange thing that's got me thinking.

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    1. I don't know if there are actually more autistic children nowadays, or if it's more a case of our increased awareness of the condition. Plus, many more children are being diagnosed as being within the autistic spectrum who would have been dismissed in the past as being "unruly."

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    2. Too true, but I also think there is a correlation between environment (aka places like NYC in early childhood), medical interventions like immunizations, and changes in societal expectations.

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    3. You're probably right about there being a correlation with the environment... but not always. I know of multiple twins who were raised in the same exact environment. One is autistic, and the other isn't. But I think the number of chemicals and additives we're all exposed to in our everyday lives must have an adverse effect. I guess some people are more sensitive to them than others.

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  29. A respite program as a mission. That's an awesome idea.

    I think back to many of the eccentric characters from my childhood. They were probably autistic. In a small town, they were just a bit of color in the population landscape.

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    1. The respite program was an awesome idea, except for one thing. After we'd been doing it for a number of years, we discovered that even though we ran the program at the church, the church's insurance policy didn't cover us. If anything happened to one of those children while in our care, WE would have been personally and financially liable. It was a scary thought, and we reluctantly decided to end the program.

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  30. After I read this whole post, I went back to the beginning and re-read your though for today. Yes, anyone who can't embrace someone, especially a child, who's just wired a little different needs to get off the bus.

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    1. Unfortunately, if everyone who didn't accept differences had to get off the bus, there'd be an awful lot of pedestrians.

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  31. This makes me realize how much we tend to take for granted.

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    1. I know what you mean. We all fall into that trap from time to time.

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  32. And to everyone's delight,
    we discovered that he had a terrific sense of humor.
    Steven taught me, taught all of us,
    to always look for and remember the person inside

    How very true! One can be surprised at some unexpected discoveries. They can be left alone unwittingly and unfairly!

    Hank

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    1. Absolutely! People are quick to agree that you "can't judge a book by its cover," but they're just as quick to judge a person based on appearances and perceived differences. Such a loss!

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