Meet others living with autism: Come say hi

Posted by Lisa Lucier @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.

@lisalucier and @gingerw, Autism is called a Spectrum because there is a wide range of abilities and behavioral characteristics going from left to right. It encompasses children who are verbal, as well as those who rarely make a sound.

Some will rock back and forth, or side to side, oblivious of anyone else in the room. Some will extend their arms, or flap their hands. There are those who jump up and down or who spin around in circles. Sometimes they appear to be counting on their fingers. These activities are called "stimming."

Stimming releases a type of energy or stress within the child. Preventing the child from this type of activity can be a serious waste of time. It is calming to the child's nervous system, just like when we tap our fingers on the table, or chew on the end of a pencil. Unless the child's choice in stimming is harmful, such as head banging, nothing need be done. Some parents have found appropriate, more socially acceptable substitutes, such as sensory swings, weighted blankets, and fidgit spinners.

To be continued. Suffice it to say, there is a little bit of sensory seeking in all of us.

Love and light,
Mamacita Jane

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@mamacita

@lisalucier and @gingerw, Autism is called a Spectrum because there is a wide range of abilities and behavioral characteristics going from left to right. It encompasses children who are verbal, as well as those who rarely make a sound.

Some will rock back and forth, or side to side, oblivious of anyone else in the room. Some will extend their arms, or flap their hands. There are those who jump up and down or who spin around in circles. Sometimes they appear to be counting on their fingers. These activities are called "stimming."

Stimming releases a type of energy or stress within the child. Preventing the child from this type of activity can be a serious waste of time. It is calming to the child's nervous system, just like when we tap our fingers on the table, or chew on the end of a pencil. Unless the child's choice in stimming is harmful, such as head banging, nothing need be done. Some parents have found appropriate, more socially acceptable substitutes, such as sensory swings, weighted blankets, and fidgit spinners.

To be continued. Suffice it to say, there is a little bit of sensory seeking in all of us.

Love and light,
Mamacita Jane

Jump to this post

@mamacita – a couple years ago while I was volunteering with preschoolers in a church program, I ended up being put in charge of one boy in our group who was autistic. He regularly led any of the other boys and girls in our group who had the least inclination to be naughty to do so, and it was disruptive. He'd often get up, say, in the middle of story time, and start doing things (wandering, playing noisily with kitchen toys) while the other children were in the middle of sitting on the floor listening.

I think the idea was great to have a dedicated companion for him, but I didn't have any training. At first I was excited, but must say ultimately I found it quite challenging. I had to take him out of the room completely at least once in every station (crafts, story, singing, etc.) cause he'd start running the perimeter of the room and not be able to sit and listen or participate. I think the games worked pretty well for him, though (silly running races, parachute games, etc.).

I was finally given some toys – I think 3 of them – created for autistic children and was so happy to have them, mostly to give him something to do while listening. The only thing was that after about 2 evenings of using these toys, he was bored with them and no longer interested.

By the end of the year with the club, I felt like this boy and I got through it, but that it would have been so much better to have helped him thrive there. Any comments – from you or others – on how to help a verbal child with autism thrive in a situation like a children's club?

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Yesss……
First off, if I had selected you to be his "one on one" you would have been given a quick, refresher course on his likes and dislikes. And how frequently he "ran through " each of them. This would be written down on a paper that you could go back and refer to, time and again. Those "likes" would have been your reinforcers for positive behavior.

Toys that are specifically made for sensory stimming are great. They come in very handy when you need to occupy your child's time for a little while. Emphasis on "little while." They are not meant to be used "instead" of the program that all the other children are engaged in. They are meant to give your child time to calm down, relax, focus, and be engaged in whatever activity the parents/teaching staff is utilizing at any given time

Then, as you experienced, your child seemed to need to leave the activity for a while, and run off energy, or just simply exercise. My experience in the early days was that my child needed more recesses and more PE times than the " typical" children. At first glance, I thought that I was being asked to be very lenient, or "soft" on this child. Nothing could be further from the truth.

Children on the Spectrum need more physical activity than their typically developing peers. Many of the children on the Spectrum benefit from massage therapy, heavy pressure, and other therapies that relieve sore, painful muscles. My Grandson loves heavy pressure on his head, back, and legs. We make a game out of it. Researchers tell us now that when a child learns through play, it only takes a relatively short period of time to learn the presented material.

If I had been with you back then at the club, you would have been given a little poster board with his schedule of activities clearly labeled for the day. So many check marks to the side would permit him access to one of his recess times. Or so many small candies, stickers, or minutes with the pet rabbit!
Reward. Not punishment. When the child sees the daily schedule and is reminded that he gets a reward after so many checks, he begins to see that his actions have positive consequences.

There is more. Much more. Lord help you if you have a "runner"as I did. Be sure to wear your running shoes and connect with all the other teachers at the facility so they know that your child may have no fear of danger whatsoever. Safety measures must be in place and every adult on staff must understand what they are there for.

I am well aware that this all seems like a lot. But once you and your charge settle in, it is so worth it.

We are better together!!!

Mamacita Jane

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Good evening everyone. How are you enjoying your 2020?

I hope you will join us here. We have a place set at the table, just for you.

Bring a friend. Bring a notepad. Bring your "questions to ask an actually Autistic person" list.

@gingerw and I will be here, as will @lisalucier, our Moderator. From time to time we will hear from our Director, @Colleen Young. @sirgalahad might even pop in from Australia. He is prepared to evacuate at any moment from the horrendous fires there. Godspeed, my friend

We make jokes, we laugh, we share, we cry. We are just like your neighbors down the street or your college roommate. With that one exception….

We are Autistic.

So I guess you could say we look at the situation from both sides. I did not always know that I was Autistic. When my little Grandson started showing signs, I mentioned them to my daughter. When the school director said she felt that he might be on the Spectrum, my daughter eventually had him tested. That In itself is difficult. Some of us really don't test well.

Come get to know us. Promise we don't bite. You are welcome here. Oh….

We will post trigger warnings in case a story is shared that might be a bit intense. We respect you and only want to encourage you to reach up and reach out.

We are better together.
Mamacita Jane

REPLY
@mamacita

Yesss……
First off, if I had selected you to be his "one on one" you would have been given a quick, refresher course on his likes and dislikes. And how frequently he "ran through " each of them. This would be written down on a paper that you could go back and refer to, time and again. Those "likes" would have been your reinforcers for positive behavior.

Toys that are specifically made for sensory stimming are great. They come in very handy when you need to occupy your child's time for a little while. Emphasis on "little while." They are not meant to be used "instead" of the program that all the other children are engaged in. They are meant to give your child time to calm down, relax, focus, and be engaged in whatever activity the parents/teaching staff is utilizing at any given time

Then, as you experienced, your child seemed to need to leave the activity for a while, and run off energy, or just simply exercise. My experience in the early days was that my child needed more recesses and more PE times than the " typical" children. At first glance, I thought that I was being asked to be very lenient, or "soft" on this child. Nothing could be further from the truth.

Children on the Spectrum need more physical activity than their typically developing peers. Many of the children on the Spectrum benefit from massage therapy, heavy pressure, and other therapies that relieve sore, painful muscles. My Grandson loves heavy pressure on his head, back, and legs. We make a game out of it. Researchers tell us now that when a child learns through play, it only takes a relatively short period of time to learn the presented material.

If I had been with you back then at the club, you would have been given a little poster board with his schedule of activities clearly labeled for the day. So many check marks to the side would permit him access to one of his recess times. Or so many small candies, stickers, or minutes with the pet rabbit!
Reward. Not punishment. When the child sees the daily schedule and is reminded that he gets a reward after so many checks, he begins to see that his actions have positive consequences.

There is more. Much more. Lord help you if you have a "runner"as I did. Be sure to wear your running shoes and connect with all the other teachers at the facility so they know that your child may have no fear of danger whatsoever. Safety measures must be in place and every adult on staff must understand what they are there for.

I am well aware that this all seems like a lot. But once you and your charge settle in, it is so worth it.

We are better together!!!

Mamacita Jane

Jump to this post

This is all so helpful, @mamacita. I can see how your reward system would have been helpful, and also perhaps using toys made for sensory stimming for a little while. Perhaps I overused them on the days I brought them out and then he tired of them. Interesting that children on the spectrum need more physical activity than their typically developing peers and that it would be common for a child on the spectrum to need to leave an activity for a while to run off energy or just simply exercise. That is exactly what I witnessed.

Sounds like you would have been the perfect coach for me with this little boy. I truly did (and do) care about him, but felt awfully ill-equipped. I mentioned this kindly to some of the children's staff at the church, and I think training for working with children who have distinct needs of various kinds is at least under consideration.

Is it common for leaders of children's extracurricular activities — athletic teams, play directors, music teachers, church clubs, etc. — to be given training for working with children on the spectrum, @mamacita? Or, do the parents usually end up training the leaders? Or do the leaders often have to wing it? @gingerw and @auntieoakley, any thoughts?

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@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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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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@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

REPLY
@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

Jump to this post

Hi, @mamacita – how did the surgery go?

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hello from sir Galahad Australia. I was first diagnosed as autistic in 1962 my father deliberately ignored my diagnosis and raised me as a little soldier and no feelings and to not cry and to ignore being autistic. led to years of bullying , physical verbal and mental abuse at the hands of my father and uncle and was buggared bu relatives. I grew in an extremely harsh environment and nearly suicided first at 18 then 23 then 59 and twice in the last 12 months .i was properly diagnosed autistic with clinical depression at age 5o by failing cognitive studies for sleep apnoea research because the brain waves they were getting was throwing them .wasnt till a special.ist clinical psychologist observed the results and said wow he is autistic. I am a qualified biomedical scientist currently working at Westmead children's hospital Sydney in oncology pathology as a medical scientist. I am teaching at Gymea TAFE in southern Sydney science chemistry and biology for TPC and year 10 and at 62 i ahve been a trainee anglican church minister , angus cattle farmer owned bookshops spent years doing volunteer work as a rural fire fighter in the bush . i am autistic but late diagnosis i dont ADULT FIX OR CURE PEOLPLE

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