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.
I am quite sure you took that statement from my mouth and put your label on it. I also chose not to have children because my family nor myself understood the problem, and as I reached adulthood I vowed to break the cycle. It was many years before I was diagnosed and understood why things were the way they were.
Hi, @gingerw – since you mentioned your childhood home, wondering how you experienced it? If I understand you correctly, sounds like perhaps it could have been more safe and welcoming?
Very little in the way of actual "things" must be purchased, in order to make a home environment safe and welcoming for a child. Whether they are on the Autism Spectrum or not, the most important thing to have set in place is the mindful response from the parents and other family members. Thirty years ago, this was not referred to as being "mindful."
@lisalucier, and members of this beautiful Connect family, We are all in a unique position here. We have the opportunity to learn from one another, to build upon each other's experiences and training. Learning how to communicate with a young one on the Spectrum is a journey. For some it comes as natural as breathing. Especially as you begin to see that you might just be on the Spectrum yourself. (As I did.)
Active listening is a term used in educational and psychological circles. It means that we listen wholeheartedly, we are not simply waiting until our chance to speak. We take note of the child's breathing. We observe their behaviors. Without judgement. We assume nothing. We are in a state of mind where nothing but meeting the needs of this little human is paramount. We accept him/her freely, with unconditional love .
For the empaths among us, being mindful is not much of a stretch. Countless articles and books have been written on the subject of mindfulness. In these situations, we are focusing on what is going on in the child's life right here and now. Appearances can be deceiving. But the continual practice of mindfulness will help any caregiver to get to the root of what is bothering the child.
I will jump ahead of myself here and say this one important thing no one likes to mention. Because of sensory issues, being constantly wired "on" with no apparent "off" button, many children on the Spectrum will present with anxiety. And we all know what that looks like. We can and will address that more in the days to come. For now, let it be said that we, the adults, must be calm and collected as we work with the children in our care. They will pick up on every emotion we have. They will feel every little thing we feel. Many times it will even seem like they are reading our minds! Children on the Spectrum frequently are experts at pattern discernment. They feel schedules even when they cannot read one. They know when something is out of order. And don't try to pull a fast one on them. They will catch it every time. See? There is humor in even the most difficult of life experiences. That is very important for the long haul.
If what I have presented seems a bit unusual, that's because we as a society do not usually start out thinking this way. It requires a conscious, ethical, moral, shift change from everything competitive society believes in. When you begin studying mindfulness, you will see that it stands almost in complete opposition to the business, educational, and life practices of our First world society.
So, be present. Be there. Give yourself 100% Learn how to be present with your child. Appreciate the moments. Give them time and space. It will help you both tremendously.
Love and light,
@lisalucier It seems I have always marched to a different drummer. If the school system, and my parents, would have allowed me to be who I ultimately am, things would have been easier. I was a challenge to keep amused and educated, because I learned quickly and absorbed complex ideas. But growing up in the 50s and 60s, there was no support for children like me. I refused to follow set patterns and was known as "wierd". My senses are highly tuned, noises/lights/ textures/etc. put me into overload, and do to this day. I can honestly say that there might have been only a few adults who saw my potential as a youngster, but could not support me. I learned to sequester myself, and sought out that which interested me, in spite of jumping over stereotypical barriers.
In today's educational and social setting, I like to think my gifts would have been celebrated by placement into programs that didn't exist then. I think it would have made a world of difference.
Good Saturday morning to you, my friends. @gingerw, you and I would have just had to have been good friends back in the day. There were no programs for children like me. In the 50's and 60's the best I could hope for was to be ignored
I wanted to fit in, to be accepted. That did not happen. In high school, most of my friends were shy, quiet introverts. I didn't bring people home because of my home situation. I didn't go to other people's homes because I was too anxious. Too sensitive. Too afraid of how I would get along in a new, strange place. Even for a weekend.
I had one really sharp teacher who was kind to me. Somehow she understood me. She was a biology teacher, so I suspect, looking back, that she had a clue as to what was going on with me.
The world we live in is not kind to those who are different, in any way. When we have to have celebrities speak up for us, and run campaigns to raise awareness, well, that should tell us something.
Feeling particularly aware of my differences today. Struggled yesterday after an extremely difficult encounter with someone who is not coping well with their illnesses and limitations. Hard to shake off the feelings of despair. Especially when your life has been built on being positive and looking for the good .
Love and light,
@lisalucier , may I add somewhat of an addendum, or perhaps,a disclaimer of sorts?
I am not an "expert" on anything, I have even adjusted my profile on social media, so as to not present as something I am not.
There are those who advocate for those on the Spectrum who are certainly more qualified, more famous, younger, and brighter than I ever even hoped to be.
What I am, is, actually Autistic.
I have done a few things.
Seen a few things.
Learned some things.
My heart for this movement has not changed.
I will always share what has helped me and others, freely.
I will always want the very best for all our people.
Setbacks and do overs not withstanding, I am still here for all of you.
With deepest respect,
Good morning, everyone. I have my French Vanilla cup of coffee right here. Waiting on you. @gingerw, @lisalucier, let's get together here soon for a little conversation.
Hello everyone. You have checked into Mayo Clinic Connect because you have some questions about the Autism Spectrum .
You might have been diagnosed recently yourself. Perhaps you have a Grandchild who has been labeled as being on the Spectrum somewhere. Maybe you just want to get a handle on what you might expect as he/she is evaluated further, because you are supportive like that. You love your Grandchild fiercely. You are a Mama Bear who won't let anything get in the way of your Grand's. good health and well being.
You might be that Father, all 150 pounds of you, muscle and bone and ready to do battle for your offspring against any who would attempt to come against you and your little family. When the doctor told you "We think he might be on the Autism Spectrum" you shut your eyes for a second, clenched your teeth, letting one small tear run down your face. Then you smiled, looked at the doctor, and said "So what do we do now?"
And here you are. You are not alone. We are volunteers here, Mayo Clinic Connect volunteers. Some of us are Actually Autistic and are living proof of the power of praying and believing families. Faith in the strength of loving families to do the next right thing. Take that next step.
Don't put your trust and faith in numbers, tests, IQ scores, or dire proclamations of what your baby can and cannot do. You and your family are much greater than that. They can be very helpful in school placement. But give it a bit of leeway. Numbers can change over time.
There are tons of books and programs out there. If you are not fond of reading, get audio books where you can. But these books will be very helpful to you. Most of them address common behaviors and situations you will want to address as you raise this precious child. Avoid the ones who guarantee a cure. Run the opposite direction from any support group who promises a "cure." You don't want a cure. Autism is not a disease. It is a different wiring system. There is Neurotypical and Neurodiverse. Would you want a cure for Thomas Edison, Mozart, Einstein, Temple Grandin? I don't want a cure for my Autistic self. I want to understand all the things that make me who I am. I want to focus on my strengths and move forward.
That is a lot of information to take in. Don't let any of it overwhelm you. You are not alone. We are better together. As we go along, from time to time , we will mention books that have impacted the Autistic community. Samantha Craft, a good friend of mine, has written Everyday Aspergers. You might want to start there.
Come join us. The coffee is always on here. And we can whip up a nice cup of tea if that is your preference. You are welcome here. We've saved a place at the table just for you.
Love and light,
@mamacita Thank you, and good morning to you!
I grew up in a family of five children.I think my dad understood there was "something different" about me, but he didn't want to rock the boat with my mother. He loved her very deeply, and left the childrearing to her. I know she did the best she could given her own quirks and limitations. But, I never did forgive her for limiting me and not allowing me to bloom. The treatment tainted and stained the rest of my schooling and learning style.
I fully embrace my difference, and continue to push against those who would rather I be more neurotypical. I can mask but have learned that it leaves me very exhausted in a short amount of time. I have learned to love me for me as i am.
@gingerw, I accept you exactly as you are. You are safe here. You never have to mask to fit in here.
I will not judge you, nor will I judge any of our new friends who come here, and read these posts.
Autism can bring with it multiple co -morbidities. Just the way it is. You can find Anxiety, IBS, Depression, Leaky Gut Syndrome, Severe Allergies. EDS, Giftedness, Down Syndrome. OCD, Oppositional Defiant Disorder, Sensory Processing Disorder. You might have the Autism Cookbook on your kitchen bookshelf. That's cool. I will not judge you for it. I actually have a copy of it myself.
Perhaps you are Dyslexic , or your partner has Dysgraphia. Not an issue here. We are all unique, different. My ADD Grandson has the worst handwriting ever. Doctor material for sure!
Maybe you are a parent who attends every single session with an ABA Practioner, and you make certain your little one understands she always has a choice. The sessions help her so much, but your best friend is terrified that Missy will be traumatized or be treated just like dogs are trained, to be instantly obedient. There are as many different ways to do these practices as there are practioners. You will not be judged here.
Do your research. Ask the questions. Read the latest findings. Visit the schools and get a "feel" of how they are run. All ABA practices are not the same. And let your child know that you don't keep secrets. That you are their parents and will always be there right beside them. And yet, respect the parents who would never, ever darken the door of an ABA practioner. They have reasons for their actions, just like you do. We can all get along and learn from each other.
Don't just expect every teacher to be part of your child's team. Make sure of it.
Do you parents know how much power you have? Your state is mandated by law to provide your child the education he needs . You can and probably will supplement. But she has a right to a full, free education just like rhe neighbor child down the street.
Life is good. Life is complicated. But together we are better.
Love and light,
@gingerw , ditto about the Dad thing. I know In my heart that my Dad knew I was "different. "
He was the kindest, sharpest, sweetest, most intelligent, caring Neurodiverse Advocate I ever knew. Before there even was such a thing.
He raised me to celebrate diversity To not ever be afraid of it.
I just love you, my friend.
You once again have made me smile.
I am so glad the,Universe picked us to be friends and advocates on this very important journey.
Raising my cup of Joe to you!
Love and light,