Meet others living with autism: Come say hi

Hi @mamacita @gingerw @sirgalahad @xottawan @looking4advice @calypso @guguliz33 @savanti @amberpep @usernameca @dgray1110 @neenee @woogie @mininettie @dawnpereda @mrmaid11@johnlionheart @alexisdewilde @samigrace08 @elan7 @worriedmom and @kimanance.

I’d like to invite you to the new discussion group for people living with autism spectrum disorder (ASD) and those living alongside someone with this condition. Wondering how you or your loved one was diagnosed with ASD? How are you doing today?

A little over twenty five years ago, I was asked to be a teaching assistant for a very special little girl. This little one had some kind of Autism, but back then we really were just on the cusp of learning about the Autism Spectrum . They did not want to label her.

We studied the writings of Dr. Temple Grandin. We went to Emory University and sat under the teachings of successful people who were actually autistic. They revealed that their diagnoses came after their children were diagnosed. We had certain techniques that we tried, and worked directly under the school system psychologist.

I had always wondered how I was able to understand my little charge. I could see her behavior in a different light than others who worked with her. It took me years to figure it out Missed diagnoses. When I finally learned I was Autistic, it was freedom

I had been diagnosed with depression, ADD, but nothing worked. Since learning I had a place on the Spectrum, it has been a beautiful journey of self acceptance.

I now advocate for those on the Spectrum. It has not always been easy, but it has been worth it all. Especially since we learned a few years ago that my little Grandson ,is on the Spectrum. So now I can use what I remember from child hood to help him. .

Our family is very close. We want those who are on the Spectrum to feel hope and encouragement. And for their families to know that we are all in this together. We can all learn from each other.
Love and light,
Mamacita Jane

Good morning, everyone. Got my cup of coffee in hand, ready to greet the day. @lisalucier , I was so excited about this new beginning, I could not go to sleep last night. It took forever for me to fall asleep.

One of the things that kept bothering me was the fact that I made a mistake in the counting of years when I was first introduced to the concept of a Spectrum. Prior to that time the only images I had in my head of Autism was in my Psychology textbooks. Pictures of children all by themselves, sometimes tied to a radiator.

So it was a couple of years shy of that 25 years ago when I discovered that there are as many versions of Autism as there are Autistic people.

When you've seen one Autistic person,...you've done just that. Seen one Autistic person. We all are not geniuses. We all don't excel at computers or math. But many do. We all are not verbal, but we all communicate.

Some very famous people have come out and told the world they are on the Spectrum. This is very helpful to everyone. It "normalizes" a particular wiring of the brain that we all on the Spectrum have. We tend to think outside the box, appreciate small details, have the ability to focus at great lengths on our own special interests, and often are considered "sensitive to the Neurotypical world. In all my studies, in all my experiences, that last statement resounds quite clearly in my head

We are going to meet a lot of very interesting people here. Parents of children on the Spectrum, Grandparents, Educators in Autism Units and in Inclusive Classrooms, Speech Therapists, Occupational Therapists, Service Dog Trainers, School System Psychologists, and Autism Advocates.

That Mayo Clinic Connect would be interested in providing a place for all these different people to interact comes as no surprise. Mayo Clinic is on the cutting edge, as always, in the advancement of health and well being. There is no other place I would rather be than right here.

Thank you, Mayo Clinic Connect. Thank you @colleenyoung, @gingerw, and @lisalucier, for all your support and your vision. Working together, as always, we are better together.

Love and light,
Mamacita

@gingerw , are you so excited?!!

I am recovering from eye surgery, typing away, making all kinds of errors, because it is hard to read clearly through a plastic eye protector. Insert smiley face.

If I had known the surgery and recovery would have gone this well, I likely would have gone ahead and scheduled both eyes close together in time.

Posts will take a bit longer for me to write, edit, and so forth. I will try to respond to any inquiries on this site in a timely manner There is no pain, really. But I have to wear special sunglasses inside the house. Soon I will be getting back to my regular schedule.

Have a beautiful day, my friend. Thank you for saying yes to this adventure. I look forward to our gatherings here in this place. Welcome, everyone!

Love and light,
Mamacita Jane

Good morning. My name is Ginger, and I am on the Autism Spectrum. This carries a great responsibility, and not just a little fear. It no longer has the stigma attached to it as it once did. I was formally diagnosed in 2014, at more 60 years old. All my life I was told "you're different", and tried to fit into boxes and labels others had ascribed to me. Didn't work. Looking back now, with the filter of time, most of my life I didn't fit in, and honestly I was okay with that. My parents and family struggled to understand me, as did other students in school, and later on, co-workers.

These days, I am glad to know I am different, and honor those also on my path. All of us on the Spectrum, and it is indeed a big swinging pendulum, deserve respect as much as anyone else, and deserve to know how best for each of us to navigate in the world where we are not always understood. It is my hope we will share here on how best to do that.

Thank you to Mayo Clinic Connect for this opportunity to meet/greet/support my fellow Auties, their families, and those they impact.
Ginger

Hi, @mamacita - you mentioned that in all your studies and experiences, that being considered "sensitive to the neurotypical world." resounds quite clearly in your head.

Wondering if you'd talk about that some more? Curious if you are meaning your experience and study has shown you that those on the autism spectrum are viewed in this light? Or, are you indicating that you view yourself as sensitive to the neurotypical world?

@lisalucier, allow me to clarify my previous statement. Do I consider my self sensitive? 100% yes, decidedly, yes. Oh, yes!

My hearing is off the charts sensitive.. It has been checked twice by a certified Audiologist. I keep earplugs in my purse at all times. I hear things most people do not.

This causes a lot of various problems. When I tune out the chaos, I might miss important information. And I do not want to appear rude.

I also sense other people's emotions and thoughts. Some folks refer to this ability as being an "empath." Which is pretty ironic,
Since lots of doctors in this country still maintain to this day that Autistics do not have empathy . This is a myth. Auties have tons of empathy. People see this and gravitate towards us.

I have a painfully acute sense of smell. Large gatherings can overwhelm someone on the Spectrum if there is too much perfume wearing. It makes it difficult to think clearly when all you can think of is Jungle Gardenia.

Touch. I can distinguish between objects in a bag merely by touch. I don't have to see the items to find them. I an able to play music I have never heard before. This comes in handy when a singer needs a piano player at the last minute and has no music. I can anticipate the next few notes as the musician sings.

Sight. I see all the things. Individual details that no one else sees. I have worked in schools where coworkers thought I was being a know it all . Because I could figure things out, and would say so, in group meetings.

It took a long time for me to see how these traits affected my family and my co-workers. They were/are Neurotypical. They think in an entirely different way than I do. Since they are in the majority, I must concede to them frequently . Yet at the same time, I must not "mask" so much thatt I lose myself in the process.

This is very important while we are discussing our young Aspies, who are learning how to get along in this world. We must build upon their very real capabilities, and encourage them in the areas they find difficult. Supports must be in place to assist them in every aspect of their lives. Respect for their transparency is pivotal to ensuring their success in this world. Our Auties will be world changers!

This does not mean that we are going to break the bank. While accommodations are mandated by law, a good teacher already does what an Autie needs, naturally. A good teacher discovers each child's learning style. She teaches each lesson using a combination of workable methods, to engage her pupils and keep the learning going. This can include, but is not limited to, small groups, visual displays and cues, music, art, movement (sitting at the desk on an exercise ball ), peer tutors, and so much more. Periodic breaks to a sensory room where it is quiet and soothing, are very helpful Even airports have sensory rooms nowadays

Oh there is so much out there! I am excited just thinking about all these possibilities that await our children.

To be continued.....
Mamacita Jane

Good morni ng, everyone. Allow me to introduce myself. My name is Jane, and I am on the,Autism Spectrum.

I was always different. I had friends in school. I even had boyfriends. After meeting and having dinner with his family, one old boyfriend said that his family thought I was "different. "

I thought they were pretty much different as well .Social behaviors and cultural ways were beyond me. I remember being very frustrated with my Mother in law. She would always insist I set the table for dinner. I could never remember where the silverware was placed. At my home, it didn't matter. My Mother would often serve us supper in a bowl with a spoon. Napkins consisted of paper towel grabbed at the last minute

My Mother was very sensitive to sounds, as am I. She didn't bother ironing clothes, because she said the wrinkles would fall out. They didn't.

So much is being done for children today who are Neurodiverse. The Autism Community is coming together in understanding and strength. Instead of dwelling on presumed deficits, children on the Spectrum are being given the supports needed to build confidence and success. Teachers are guiding them with understanding and acceptance. As Dr. Temple Grandin says , we must build on their abilities .

My hope and prayer is that our world continues in its march towards full acceptance and celebration of all our children. That every adult on the Spectrum has a place at the table. Where we won't ever have to use the word inclusion again, because all will be judged by the content of their character.

I hope I am not dreaming.

Love and light,
Jane

Thank-you for forming this group. I have a 40-year-old daughter who was diagnosed with Autism at the age of three. At that time, Autism was not well known, nor well understood. Autism is hard to understand-our daughter showed signs of great intelligence and yet, she constantly shook her hands, walked awkwardly, and learned to talk by echoing phrases. To young parents, as we were at the time, it was confusing and quite frightening. There was very little written on the topic.

Thank goodness, we went to Riley’s Children’s Hospital; Indianapolis, where our 3-year-old daughter was diagnosed with a form of Autism. I remember my husband and I leaving in tears- hopeless and sad that our daughter would be facing a lifetime of ridicule, difficulties and limited success in life. Schools at this time would put Autistic children in classes for the emotionally disturbed, because there was such little understanding of autism at the time. Our child was put in classes with violent students, and it was scary for her. Schools were not prepared for autistic children and did very little at the time to develop the right programs. Fortunately, my husband and I had a large loving family who spent every waking moment loving and teaching my daughter- allowing her to experience and adapt to life by taking her everywhere with them and treating her like every other child. God bless my Dad-recently deceased- who spent hours with our daughter teaching her math and counting money; my mother (still alive) spent hours on reading and social skills. But most of all, we surrounded our daughter with acceptance, joy and happiness.

Fast forward.... 37 years, and I’d love to talk to young parents who’s children have been recently diagnosed. Thank goodness to early speech therapy, physical therapy, a loving and accepting family, and hours upon hours of teaching..... our daughter has thrived. She has grown into a beautiful young lady, speaks well, loves to read, is happy and kind, and has a good job. We couldn’t be more proud. She is the most loving daughter a parent could ever have and our entire family embraces her with a special love.

When I look back 37 years..... I vividly remember sobbing as my husband and I walked out of the hospital - hopeless. We realize today, that none of those fears were reflective of how our lives would ultimately turned out. I‘d like to share these experiences with young parents- that with the right (and early) interventions- your child can thrive and fit into society very well. But most importantly, show them consistent love and acceptance. Read to them- even when it appears they aren’t listening. Walk with them-even though they may walk awkwardly. Talk to them normally- even though their method of speaking may be different. Hug them-even if they seem to freeze up and not know how to respond. Because deep down..... autistic children need these things as much (if not more) than every other child. Today, we couldn’t imagine life without our unique and beautiful daughter. God blessed us with one-of-a-kind and we are thankful.

@cindyhanauer How fortunate to have had the experience you have had with your daughter! Your words are a teaching post for so many, and I am looking forward to input from others who have also raised up a child on the Spectrum. Your daughter sounds like a wonderful woman. Autism can take so many different forms and degrees.
Ginger