Meet others living with autism: Come say hi
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.
@cindyhanauer – good to meet you, though I realize you've been on Connect a couple of months. The story of your daughter, her autism and where she is today is inspiring.
Glad you've connected with @gingerw, and hope you will also get to know @mamacita and @sirgalahad. I'd also like to introduce you to @auntieoakley.
You mentioned you'd love to talk to young parents who’s children have been recently diagnosed. We, too, hope to bring in parents like that to discuss what they are going through with their children diagnosed with autism here on Connect. Have you had a chance to share your daughter's story with any other parents in your area? If so, how did it go?
@lisalucier Thank-you for the introductions. Yes, I hope that this forum draws a good cross-section of discussion and experiences. Regarding sharing my story- this is the first time I’ve shared it, believe it or not. Until this year, I traveled quite a bit internationally for business and am now permanently back at our home here in Jacksonville. I would love to encourage newly-diagnosed families. I wish I‘d had someone to talk to way back when my daughter was diagnosed- people with real experience. I think at that time…. even the doctors were trying to figure it out!
In agreement with @mamacita ….. my daughter is also very sensitive to sound and a true empath. In fact, when one of us would walk into a room after a bad day, our daughter would take one glance and ask, “What’s wrong?”….. even without an expression on our face and before we’d say one word. This is contrary to what many people believe of an autistic person.
On another note, my daughter also has a photographic memory (HSAM is what it’s called, I believe.). She can remember details of “the room” in events that happened 20 years ago- even the colors people wore. She can recall the exact year that a pop song first came out- even the songs that came out in the 80s when she was a small child.
Yes…..amazing. But most of all as parents, we’re so proud of how she’s navigated the world.
@cindyhanauer Gosh, your story and that of your daughter's journey needs to be told! Okay, I am repeating myself, but It's true. How I wish I had had a similar support system. I do believe my father understood my difference, but felt powerless to assist, and there was one teacher in high school who saw my potential, but the damage by neuro-typicals had already done the damage.
Like your daughter and @mamacita I can sense things, and recall in great detail. This made some of my career choices ideal. And frustrating for those who would like to understand how I "got it".
Here's to a sunny day wherever you are, even if the clouds are washing Grandfather Sun's face.
Welcome to connect. I only wish that every child on the spectrum had the familial support you write about. Thankfully there is more understanding today, although I would argue that in many places and in many ways, some things remain the same. I love hearing about children and teens who are learning to navigate with an understanding of the differences. It is difficult enough for a child to find a path in the world, much less one who processes information in a completely different way. When you left the hospital sobbing, you envisioned a different life for your child, and without the understanding and tolerance of her differences her life may very well have been what you feared. Good for you, good for her, and thank you for sharing your story.
I am soaking up all the wonderful feels from reading your story and that of your daughter's.
You have absolutely made my day. On so many levels your story is like mine, and like that of my precious charge, back in the 1990's. We were barely getting our feet wet back then. No one had any real life experience with this situation, and the professionals left much to be desired.
We even did a form of ABA that did NOT include negative reinforcement. I know this because I was the one who did most of the technical applications of the psychological principles. I kept daily records, and we learned patterns of behavior, and were able to make modifications in our daily practices.
I took her to the library as part of our daily routine. I helped her check out books that were more advanced than she could easily read. But that only fired up her determination to read more! We used play time on the swings to learn material we wanted to reinforce. I used puppets to help teach her to read. I can still hear her laughter.
Those were good times. But very hard times, as well. The regular education teachers mostly didn't want either of us to be there. They did not understand the Autism Spectrum for what it is. They usually just said that she needed a "good spanking." They thought I babied her. I didn't. I just instinctively knew her limits. And I chose to build on her strengths.
Her awesome parents did every single thing they could for her. They never expected her to be perfect. They just wanted her to be happy and live her dreams. They succeeded.
With love, faith, and hope, all our children can have better lives if we don't give up. I know you won't give up on your daughter. And I won't give up on my Grandson. Educators, Doctors, and anyone who deals with children need to be well versed and trained in all aspects of the Spectrum. Law Enforcement Agencies are beginning to catch on, all over the country. Lives depend on this knowledge
Thank you so very much for sharing your thoughts on this vitally important subject.
It is very close to my heart, as it is yours. You are amazing! .
Love and light,
@auntieoakley , your words are spot on. That's why those of us who have exoerienced Autism are compelled to speak the truth in love . Many times, love must indeed be tough. It is totally human to want things to be calm, go smoothly, and not raise a fuss. But if any one of our children is denied a seat at the table, it becomes a problem for us all.
Thankfully there are warm, caring, thinking individuals who look at the big picture and see it for what it really is. You are one of those people.
I am honored and happy to know you here. We each have a voice to use and gifts to be shared. Thank you for using yours.
I look forward to hearing from you.
Love and light,
Hi, @mamacita – You talked about using what you remember from childhood to help your little grandson diagnosed with autism. If you are comfortable sharing about this topic, wondering if you'd talk more about what you are doing to help him from recollections from your own childhood?
@lisalucier , I will be happy to share some of the things that are near and dear to me. It is the oddest feeling, looking back at my childhood, and remembering how I felt. How I saw things from my perspective. Fast forward to the present. My precious little Grandson was given a horrible prognosis. We fought it. Those people are no longer at that particular facility. Their assessment of our Grandson's abilities and development was way off base. Not uncommon an experience, unfortunately. We knew he was smart. We knew he could be kind and sociable. We knew he could learn and be anything he wants to be. He wants to be Batman.
I will mention the very first thing that comes to mind when working with a child who is on the Spectrum. Or any child at all, really. The child must feel safe. Boundaries must be set in the beginning. The child will relax after a bit. Knowing that you are the teacher, the parent, or whatever position you play in the child's life…That you are in charge. You tell that child on their level, that you will protect them. You will not allow anyone to hurt them. And you make double dog certain to keep that promise. And, because of that, you will not permit him/her to hurt anyone else, including themselves. You assure them that you are their advocate, and that you know they will be successful on this journey of learning and living.
All of this is easier said than done. You first must have arrived at the place in your life that you are willing to storm the gates of Heaven for this child. Because that is precisely what you will have to do.
You will be met with stares, disgust, and attitudes from the pit of hell. You will question the validity of some of your friendships and family relationships. Those who will not attempt to understand what your child is going through May be given space…put on the back burner for awhile. This isn't about them. It's all about your child and your responsibility to do everything you can to help him feel comfortable in his own skin. It is a struggle. But one well worth doing.
Next time we will talk a bit more about making your child's space at home so safe and welcoming that his spirit just blossoms. He is differently wired, so very aware of everything around him. There are many different ways to calm and sooth him/her. I look forward to talking with you about some of these dealbreakers, next time.
@mamacita, that is an interesting concept for patients of a child on the spectrum about making your child's space at home feel safe and welcoming. Will you share more about that? @gingerw and @cindyhanauer, do you have thoughts on this you might share, as well?
@lisalucier As I never had children, by choice, it's not something I can address. Perhaps if my childhood home had felt safe and welcoming it might have been different.