Meet others living with autism: Come say hi

Posted by Lisa Lucier, Moderator @lisalucier, Dec 19, 2019

Welcome to the Autism group on Mayo Clinic Connect.

Living with autism spectrum disorder (ASD) may have many aspects in common with neurotypicals, but also some uniquenesses. Whether you are someone diagnosed with ASD, or are living with or caring for someone with ASD, let’s connect.

I’m Lisa, and I am the moderator of this group. I look forward to hearing about the lens through which you look at life, your experiences, and what comes easily to you and what presents difficulties. Perhaps you or your loved one has been misunderstood or even mistreated by others, or maybe you have heightened senses that bring you much joy. Whatever your story, I encourage you to share it openly and frankly, and also provide compassion and a place of safety for others touched by autism.

I’d love to welcome you and introduce you to other members. Feel free to browse the topics or start a new one.

Have a seat in a comfy chair, grab a cup of coffee or a beverage you like, and let’s chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autism (ASD) Support Group.

@mamacita

@lisalucier, I commend you for your efforts at making that little boy feel comfortable and included!

I agree with my friend and colleague, @gingerw, that more training should be given accross the board: schools, churches, day cares, scouting groups, law enforcement personnel, and community leaders .

With my experience and my mindset (actually autistic) I would have been on cloud nine just to have someone like you in my corner. From your recounting of events, I sense that you focused intently on determining the best method of working with your student. That's the best we can all do.

What works for one child won't work necessarily for another. At our last General Conference of my church, when registering ahead of time, there were questions you had to answer about your children. They wanted to know if any of them had any particular special needs that needed to be addressed. As an aside, the Director of the childrens department was an actual physician. She was wonderful! She knew exactly what to ask. Obviously she had educated herself in the area of special needs. She made sure that all the carers and teachers had a basic understanding of what is expected when working with a child with special needs.

I suppose it's not that hard for me, because I grew up being around kids with exceptional needs. I was different, myself. I was raised to emphasize the positive in each person , and to give support wherever needed. But individuals who did not share my upbringing can learn what to do and how to do it. Love for children goes a long way. And listening, instead of always speaking. You did great, Lisa!

Now, what Ginger said about rhe responses people have...unfortunately, she is spot on. Most of us have encountered these types many times over.

Some want to be of assistsnce, and try to learn all rhey can. They want to help! Let them.

Others are so taken aback, they are useless. Beat a,hasty retreat.

Then there are those who are totally against having children "like that" involved in their program. Run as fast as you can. Or stand your ground and fight for your child. The choice is yours. If you are in tune with your child, the right choice will reveal itself to you. Way the pros and cons. Then make the best decision you can.

It is getting late. Surgery tomorrow at the crack of dawn. But I will be back on here. This is one of the most rewarding ways to spend one's time. The Spectrum Community is full of exciting new discoveries, opportunities for sharing what works, and educational programs to assist families with children. Adult ASD members are not left out in the cold, either. Social Groups, Advocacy Groups, and even cartoons are being used to connect isolated menbers in ways unheard of even ten years ago.

The future is bright. We are indeed, better together.

Love and light,
Mamacita Jane

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HI MAMACITA

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@gingerw

@lisalucier I would really like to think that these days people are doing more inclusive training, to do a better job with students of all abilities. Don't know if that is really happening. From what I have experienced, the variety of manifestations of ASD require attention to each individual and how they may be handling a situation, in order to be an effective leader/teacher. In my own experience, when I have taken workshops or classes, I have very frankly told the instructors or leaders I am I on the autism spectrum and that I have preferences for seating and interactions, in order to make my experience the most positive possible. Some are very thankful that I made the comments, some are taken aback and don't know what to do, and some just don't care. I have a multi-day creative Workshop coming up in March and know that I need to talk to the person putting it on. One of the teachers is someone who knows me, and knows I am on the Spectrum, so she won't be surprised.
Ginger

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hi gingerw i am back

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@auntieoakley

As a creative instructor, I am keenly aware of people on the spectrum, I am also keenly aware of the lack of training for most children’s sports programs locally. I live in a rural area so there are limited choices for sports programs, luckily there are quite a few agricultural programs that are pretty inclusive. The benefit of a small community is in being familiar with our neighbors. I am grateful that my neighbors feel like they can call on me for help or advice.

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hi auntoakley

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In reply to @sirgalahad "hi auntoakley" + (show)
@sirgalahad

hi auntoakley

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Hello sir Galahad, I am glad you are here.

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@sirgalahad

hi gingerw i am back

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@sirgalahad Waving my hands wildly to welcome you back here. You've had a tough go recently. I hope you have not been adversely affected by the fires and the environmental concerns of those. Your story is your story, and we each can relate to certain parts of it I am sure. Thank you for being here and thank you for giving us your perspective. You are a strong person and have persevered in light of what others would have you do.
Ginger

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@gingerw

@lisalucier I would really like to think that these days people are doing more inclusive training, to do a better job with students of all abilities. Don't know if that is really happening. From what I have experienced, the variety of manifestations of ASD require attention to each individual and how they may be handling a situation, in order to be an effective leader/teacher. In my own experience, when I have taken workshops or classes, I have very frankly told the instructors or leaders I am I on the autism spectrum and that I have preferences for seating and interactions, in order to make my experience the most positive possible. Some are very thankful that I made the comments, some are taken aback and don't know what to do, and some just don't care. I have a multi-day creative Workshop coming up in March and know that I need to talk to the person putting it on. One of the teachers is someone who knows me, and knows I am on the Spectrum, so she won't be surprised.
Ginger

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first one has to be open that we autistic and neurodiverse do operate on different operating system .Dependent on our comorbidities there will be huge variances in levels of functionality and we all have quite high levels of cognitive abilities and there is functionalities which i pact on how we operate and our express ourselves .its huge mistake to view that we are all dumb.

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@sirgalahad

first one has to be open that we autistic and neurodiverse do operate on different operating system .Dependent on our comorbidities there will be huge variances in levels of functionality and we all have quite high levels of cognitive abilities and there is functionalities which i pact on how we operate and our express ourselves .its huge mistake to view that we are all dumb.

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Agreed, or all the same.

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I agree with @sirgalahad. The concept of autism spectrum at the very ground level is simply this: we who are Autistic function from a differently wired brain.

We see the details others miss. Often.
We hear the sounds no one else hears, often.
We smell the fragrances so one else does. Often.
We feel the scratchy individual fibers on the tag behind our tee shirts. Often.
We taste the awful bitterness no one else does. Often.

The only Always in our makeup is that we always look for our tribe who is like us and when we find it we rejoice.

Do you know someone who is like this? I do.
I am someone like this.
Living in this Neurotypical world is hard.

If you know someone like this, know this.

They think and love and cry and dream and play and learn.....
With the best of us.

We are not less than.

Read Neurotribes with me.

Love and light,
Mamacita Jane

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@mamacita

I agree with @sirgalahad. The concept of autism spectrum at the very ground level is simply this: we who are Autistic function from a differently wired brain.

We see the details others miss. Often.
We hear the sounds no one else hears, often.
We smell the fragrances so one else does. Often.
We feel the scratchy individual fibers on the tag behind our tee shirts. Often.
We taste the awful bitterness no one else does. Often.

The only Always in our makeup is that we always look for our tribe who is like us and when we find it we rejoice.

Do you know someone who is like this? I do.
I am someone like this.
Living in this Neurotypical world is hard.

If you know someone like this, know this.

They think and love and cry and dream and play and learn.....
With the best of us.

We are not less than.

Read Neurotribes with me.

Love and light,
Mamacita Jane

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@mamacita This morning I am feeling very vulnerable. Your words are a lifeboat for me. My simple "Thank you" seems so trite.
Ginger

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@gingerw .....when you are vulnerable, please think of me. I am your sister across the country who shares a way of thinking and feeling that most people around us don't.

Remenber me when you experience burnout. I survived, and so will you.

When you are this close to a meltdown, do not forget that you have fought many battles to get where you are. That meltdown is a wake-up call that lets you know we need a big healthy dose of time and space and self care. Whatever that is for you, I send huge doses of love and peace your way.

Healing prayers and loving light, always, always to you, my friend. We have been given a mission and sometimes we get tired.
Rest.

Breathe.

You do not fight alone.

We are all here for you.

And we are here for you who read this message. We are better together.
Love and light,
Mamacita Jane

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