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.

nylrehs79 | @nylrehs79 | Nov 18, 2020

In reply to @cindyhanauer "Thank-you for forming this group. I have a 40-year-old daughter who was diagnosed with Autism at..." + (show)

@cindyhanauer

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.

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I have son with same condition, hes now 18, 15yrs ago when he was 3 i take him to the doctor for hematology purposes but suddenly dr said he have autism behaviour, she advice me to take him to the nuerology, but i dont ha much time spending with him coz im a working mom,i left him with the care of his father,after yrs n yrs he not developed his brain ability to study, at his aged hes brain ability to study is very low😥i dont have time to help him, his now 18 feel the aged of teenager but he never developed his speech, not all the word he said can understand,sadly his father left us and now he's very hardworking teen ,he find a good waY to have own money for himself, getting job .im happy about that of course but still im worrying for his future when im no longer around him,
Im still hoping he can have his own family someday so he ha e own family to take caRe of him

dowagerginger | @dowagerginger | Nov 18, 2020

In reply to @gingerw "@dowagerginger I welcomed you on another post you made, but wanted to acknowledge you here. You..." + (show)

I live in uber rural area and gave not socialized much. I'd like t blame being on spectrum, but it really is just not in mood to deal with humans in current schedule. I help my son til afternoon then babysit a friend who is about stage 5 Alzheimer dementia. My personal time is balanced with sleep.

dowagerginger | @dowagerginger | Nov 18, 2020

In reply to @sqrlygirldad "Are you aware if being diagnosed after your child is diagnosed is a somewhat common occurrence?..." + (show)

Actually I was diagnosed first as a child and "cured" of Aspergers. AKA applied behavior hammered-in therapy until I had a pavlovian dog responses on acting 'human' for situations. It was very successful many years until a car accident with TBI. rehab did not account for English not being first language nor my Asperger's. Sothe 'fix' was broken. But I have been re DX as Autism-moderate. OCD, Anxiety since Dec 2018

Ginger, Volunteer Mentor | @gingerw | Nov 19, 2020

In reply to @nylrehs79 "I have son with same condition, hes now 18, 15yrs ago when he was 3 i..." + (show)

@nylrehs79 Welcome to Mayo Connect! We are all patients, family members and/or caregivers here, not medical doctors. We offer our experiences and share with others, to help offer strength on this journey of life.

You mentioned that you feel your son was not able/allowed to develop his speech abilities. There are some resources you can look at that may be able to give you some ideas that he could use. https://www.autismspeaks.org/adults-autism is an organization that has many programs. Also, the Center for Disease Control has links and ideas https://www.cdc.gov/ncbddd/autism/links.html

Having autism, being diagnosed on the autism spectrum, does not need to be a dire situation. We process things differently than most people, but it is not impossible. I hope you are able to look at these sites and find some useful information for your situation.

Will you come back and let me know how I can help you?
Ginger

virgogirl7 | @virgogirl7 | Dec 27, 2021

I'm 29 years old and have a diagnosis of Asperger's Syndrome. I just received my second Master's Degree in Library Studies and have my first Master's Degree in American History. I write and publish regularly in the field of American history as well as in that of autism/disability studies. I have a good life but have decided it is now time to find my soulmate -- a kind, funny, easy-going and really bright woman in their 20's-mid 30's This is a serious and heartfelt quest with marriage being my ultimate objective. Take the risk or lose the chance as they say. I'm looking for someone of substance and sensibility. Smokers and cat-owners wouldn't work for me - allergic to both. Happy holidays!

Colleen Young, Connect Director | @colleenyoung | Dec 27, 2021

In reply to @virgogirl7 "I'm 29 years old and have a diagnosis of Asperger's Syndrome. I just received my second..." + (show)

Good for you, Virgogirl to be ready to take a risk and seek partnership. It's not easy to find a soulmate, especially as COVID restricts social gatherings. Have you explored using dating apps?

virgogirl7 | @virgogirl7 | Dec 27, 2021

In reply to @colleenyoung "Good for you, Virgogirl to be ready to take a risk and seek partnership. It's not..." + (show)

Hi, Need to correct something here. I am a straight 29-year-old guy and my mom set up this account. I am a bit on the shy side and haven't explored using dating apps. I'm a historian and would just LOVE to meet a young woman who is also a history buff! Sign me: Aries Boy

Colleen Young, Connect Director | @colleenyoung | Dec 27, 2021

In reply to @virgogirl7 "Hi, Need to correct something here. I am a straight 29-year-old guy and my mom set..." + (show)

Hi AriesBoy. Would you like to set up your own account on Mayo Clinic Connect?

Chris, Volunteer Mentor | @auntieoakley | Dec 27, 2021

Hi ariesboy, you should think about setting up your own account if you are comfortable with that, only so that Mom does not have to get your notifications.
I was diagnosed with aspergers in my 40s. Geez, the things I might have done differently, boggles my mind. It is not impossible to find someone to have a life with, not everyone expects neurotypical in a marriage. However, when dating, I would put it right out there, better to find out early if someone cannot live with your differences. The heartbreak of someone deciding you are not the one after promises are made can be crushing.
My husband is neurotypical, he is smart and kind. He is grateful to have a wife that compliments his strengths and weaknesses.
Is there a history forum you frequent? You also mentioned you just got your second masters, is there an academic or alumni forum where you might meet people?

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