little girl peeking over white chair, you can only see her eyes and blond hair

My Daughter Is Not 'Grumpy,' She's Autistic

2k
2k

I couldn’t tell you how many times people have commented my daughter, Beans, has a “grumpy” disposition. I’ve lost track. It feels as if it happens daily, really. But the thing is, she isn’t grumpy – she’s almost 3 years old, she’s a toddler, and she’s also autistic.

If you knew she was autistic, you’d know she doesn’t get “shy” around strangers, she actually struggles socially.

If you knew she was autistic, you’d know it takes her a long time to warm up to people.

If you knew she was autistic, you’d realize trying to get her to give you eye contact or say hello is really distressing for her, and you’d back off.

If you knew she was autistic, you’d know it takes her about half an hour to decide on what item of clothing to wear every morning — despite having a wardrobe full of clothes. She only regularly wears about eight items.

If you knew she was autistic, you wouldn’t use the hand dryer right beside her in the public toilet and you wouldn’t mow when she was around.

If you knew she was autistic, you’d understand why she likes her food divided up sometimes.

If you knew she was autistic, you’d be compassionate and understanding when you see me carrying her everywhere — because her legs tire easily, and they hurt.

If you knew she was autistic, you’d know if the morning routine is deviated from in any large way without warning, she has a difficult time adjusting.

If you knew she was autistic, you’d know how much thunderstorms terrify her.

If you knew she was autistic, you’d know she completely falls apart when she’s itchy.

If you knew she was autistic, you’d know some shoes can take a long time to put on comfortably.

If you knew she was autistic, you’d see how at peace she was when she was playing in water.

If you knew she was autistic, you’d realize an iPad or an iPod can be a parenting tool — not a display of bad parenting.

If you knew she was autistic, you’d realize she’s an imitator and she’s processing her world through watching and copying others.

If you knew she was autistic, you’d see how lining up things and having collections is super calming for her — not funny or odd.

If you knew she was autistic, you’d know when she’s upset and I’m not cuddling her or touching her it’s because she doesn’t like to be cuddled or touched when she’s upset, it’s not because I’m a bad parent.

And if you knew she was autistic, you would know when she smiles it’s authentic; when she laughs it’s from the heart.

When you see her for who she is, hopefully you’ll realize she is not “grumpy.”

We want to hear your story. Become a Mighty contributor here.

2k
2k

RELATED VIDEOS

TOPICS
,
JOIN THE CONVERSATION

To My Best Friend Who Accepts Me for Who I Am

194
194

Dear Alysia,

I’ll be completely honest with you — when we first met back in sixth grade in 2000, I couldn’t stand you. I was used to being the teacher’s pet. With my black or white and literal thinking, I followed rules to a “T.” Although I was a goody-two-shoes, my issue was that I misunderstood people easily. I was still awaiting my autism spectrum diagnosis. When you came in the picture, you were so annoyingly perfect! I thought you were smarter, funnier and just all-around better than me. I thought I was weird, but you were even weirder. Those first few months sucked.

Until one day, when we were in reading class listening to a story, and I noticed my desk was a little off balance. It was squeaking. Then I heard a noise. I looked up and saw that your desk was squeaky, too! I mean, really?! You had to out-squeak me?! But I couldn’t help smiling, and when you started giggling, I did too.

The author and her friend as kids, posting outdoors in front of tree in neighborhood
Erin and Alysia in 2001

Our friendship began. And all of those “annoying” little qualities I couldn’t stand about you…well, they started to benefit me. I didn’t realize it at the time, but you were teaching me things I needed to grow into a successful adult.

Like when we worse strange outfits. Only, I wore mismatched shoes, and you simply wore fun mismatched socks. I didn’t know fashion (and let’s be honest, I still don’t), but your strange socks helped me to understand that it’s OK to be a little different.

As we grew older, we have stayed close. I was officially diagnosed as being on the autism spectrum in 10th grade. Rather than dissing me for some more neurotypical friends, you asked me questions to learn more about it. Then you figured out more ways to help me.

From taking me to the beach because I couldn’t drive myself there, to helping me clean my apartment; from helping me with my college homework to supporting my autism self-advocacy work, you (and your family!) have been there for me. We have talked things through so I better understand the world around me. Although I feel like you know me so well you could read my mind, even if we have misunderstandings, you remain level-headed and patient while we sort things out. This is a cherished gift for me as someone on the autism spectrum.

I could never thank you enough for accepting me for who I am, while still pushing me to do my best. Thank you for not leaving me in the dust when I was diagnosed, but sticking by me. As a result, I feel like we are taking this lifelong journey together.

The author and her friend this year, smiling and standing indoors near window
Erin and Alysia in 2017 (Photo by Peter Brown)

You are an awesome friend, and an amazing person.

Your friend,
Erin

We want to hear your story. Become a Mighty contributor here.

194
194
TOPICS
JOIN THE CONVERSATION

How Communication Can Be Hard for Me as an Autistic Person

195
195

Starting a conversation — it seems so simple, right? If only it were that easy. Communication can be hard for me as an autistic person. Sometimes others interpret me wrong, such as if I look up to the ceiling and do my horse sound (a gentle vibrating exhale), others can interpret it wrong. Once, I did this and others interpreted it as me being impatient to get on the barrel, and my coach said “Do you want me to move this stuff off of this barrel so that you can practice? You just have to ask to get on the barrel.” I pretended to go along, and I got onto the barrel.

Talking on the phone is very hard for me. Because I cannot see the person, I cannot guess what they are feeling. The voice is also altered, so it can sometimes sound like a totally different person is talking to me through a rectangular screen with speakers. It also requires faster processing, because the person is waiting on the other end of the line. I process things more slowly, so this can be difficult for me. I avoid talking on the phone a lot because of these things. I also have high anxiety, so that makes it even more difficult to talk on the phone.

I am best at communicating through texting, emailing and writing. Communicating this way gives me more time to process what I want to say, and it gives me more time to process what someone is saying to me. I have started to communicate with my mentor, friends and family members through texting and emailing. My mentor has even said that I am communicating more than I did last year.

Conversations are really hard for me. I tend to just talk about my SIs (special interests) around friends and family members. Around others I don’t know well, I tend to be very quiet and I don’t talk much. Part of this is due to my high anxiety, and part of it is due to not knowing what to talk about. Obviously I can’t talk about my SIs a lot, because people don’t just want to hear about horses, autism and dogs all the time.

I try to go through conversations in my head, but they never come out of my mouth.

I feel sad sometimes because I cannot talk with others, because I struggle with starting a conversation and I have anxiety. I also sometimes get so anxious that I cannot make myself speak. This happened to me once with my mentor, and I had to explain that my anxiety made me not able to speak.

Yes, communication is hard, but I will keep working at improving my communication skills. I will take it one step at a time, and I know I have support around me to help me. It may seem like calling someone is a small thing, but really it is a big thing for me. When I have done it successfully, it is an achievement. I am autistic, and I can do things neurotypicals can do — it may just take more time and practice.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Milan_Zokic

195
195
TOPICS
JOIN THE CONVERSATION

How These Ambassadors Are Teaching Acceptance for Autism Awareness Month

617
617

We are approaching another April and Autism Awareness Month will be celebrated worldwide. It’s not without its controversy. Some feel the extra focus on awareness can only benefit those in the autism community. Others feel it does little to address the real issues of autistic people, such as independent living and employment. We see it as a time when the public and media are more open to talking about autism.

More than any other time of the year, we have an opportunity to change how the public thinks and acts towards autistic people.

The Women’s March showed us the power of grassroots advocacy — that each of us can get out into our communities to share our stories and help make a human connection to autism. We were moved by their advocacy, took action and created the Acceptance Ambassador Initiative.

Across the country, parents and teachers will be speaking to groups — their local schools, libraries, Boy and Girl Scout meetings, and homeschool co-ops — telling their stories. Here are a few of the reasons why they have joined our Acceptance Ambassador Initiative:

1.      “We are going to educate others about autism because we don’t want them to be afraid of it. Kids with autism are not so different. They just want to be loved and accepted just like everyone else.” – Cate (Mom) and Charlotte (Age 12) Luther

2.      “I think it’s important to get out in the community to help my son find his space in the community exactly as he is. And by talking about it to as many who will listen, I am helping more people see him as Ryan, not that boy with autism. I want to start with young people first because when you teach a child at a young age to see everyone as an individual they will be the change our world needs.” – Lee Ann Chergey

3.      “It’s important for me to raise awareness of the innate beauty, blessings and brilliance of neurodiversity. I want people to realize that we all have a purpose, a place, and we’re all important. My son Sawyer (age 6) sums it up best – ‘we’re all different.’ I don’t want autism to be stigmatized, and I want my son and all kids to be confident in themselves and their abilities.” – Mandi Mathis

4.      “It is important for teachers and autism advocates to get out in to the community to spread awareness, understanding and to dispel myths about individuals with autism. There are far too many widely believed stereotypes surrounding these individuals. It is my mission to get out there, and inspire change through teaching school professionals and parents how to best assist their children with autism.” – Trisha Katkin

5.      “We are going to schools in our community to put on “acceptance assemblies” for students and teachers. It’s been amazing to witness the interactions between us as autistics and the kids — so engaging and heartwarming. Schools and community groups are eager for this kind of interaction so we encourage everyone to get out there to advocate and educate!
James Sullivan and Jonathan Murphy

We all have a voice — autistic individuals, parents, educators, and professionals. We all need to be heard. And we all need to listen. It doesn’t matter if we don’t always agree. It’s more important that we hear one another as we openly share our fears, challenges and hopes with the people in our communities. We are very optimistic that together we can, and will, create positive futures for those on the autism spectrum.

We welcome you to join our mighty group of Acceptance Ambassadors. You’ll find more information at geekclubbooks/acceptance-ambassador.

We want to hear your story. Become a Mighty contributor here.

617
617
JOIN THE CONVERSATION

When My Son on the Autism Spectrum Told Me What He Thought of Sesame Street’s Julia

4k
4k

When the “60 Minutes” segment about Julia, Sesame Street’s new autistic muppet character, aired, within minutes my Facebook feed was filled with stories about it, and my phone started pinging with text messages.

One of the stories included a link to the online video of the segment, which I turned on and my son came to stand next to me as I watched it.

I liked what I saw of Julia, such as not responding when other characters addressed her, and flapping her arms when she was excited.

I believe the introduction of this character and these behaviors was an important step to help normalize autism for other children, so that when they saw similar actions from their classmates, they could better understand and accept behavior that might be otherwise confusing to them.

While Julia’s autism expression was different than how my son expresses his autism, it was still valuable for informing people who didn’t know anything about it.

My son liked it, too, saying he thought Julia did a good job showing what autism can look like.

But then things started to go downhill.

Almost immediately there was a sharp increase in stimming. He stopped responding to us as we tried to get him ready for bed, and resisted every step of his bedtime routine.

Sometimes if something happened during the day, like a bad encounter with another player on a game server or a problem he did not know how to solve, for example, his frustration and anxiety can come out at bedtime.

If I am patient, he’s usually able to eventually articulate what was bothering him.

So I waited, and when he was able to converse with us again, I asked him what was going on.

“I don’t know,” he answered. I tried to think of what had happened over the day which might be emerging now. As I thought about it, I realized the behavior started shortly after we had watched the “60 Minutes” segment.

“Was there something about Julia that made you uncomfortable?” I asked him. He nodded, seeming to me like he was relieved we had figured it out.

“She reminded me of how different and weird I am,” he answered.

This one statement from my son demonstrated to me how well “Sesame Street” had pegged it with Julia.

My son feeling this way was exactly why Julia was needed. If his behavior was never treated as strange by others, he would never think that he was different or “weird.”

The fact that he was responding so strongly meant to me that Julia had successfully captured some recognizable essence of autism which my son felt, not just saw.

I don’t think he would have responded so strongly if she did not ring true for him.

We work closely with our son to teach him that every aspect of him, including his autism, is unique and wonderful. We are well-supported by a network of professionals who celebrate his strengths and work with him and his challenges in positive ways.

And yet he still feels like an outsider at times. Julia’s presence on “Sesame Street” could help with that feeling in other kids on the autism spectrum.

Will Julia solve this for all kids on the spectrum? Of course not. But I believe she is a great step in the right direction.

Editor’s note: This story has been published with permission from the author’s son.

Follow this journey on Autism Mom.

We want to hear your story. Become a Mighty contributor here.

Photo source: YouTube video

4k
4k
JOIN THE CONVERSATION

'Speechless With Carly Fleischmann' Is Back and Features James Van Der Beek

2k
2k

Carly Fleischmann took the internet by storm last April when she interviewed Channing Tatum on the debut episode of her talkshow, “Speechless With Carly Fleischmann.” Now, the talkshow host on the autism spectrum is back with a second episode featuring actor James Van Der Beek.

The 10-minute interview, which aired Wednesday on Fleischmann’s YouTube channel, shows Fleischmann interviewing Van Der Beek using a communication device. The two talk about Van Der Beek’s success as an actor, as well as his roles on “Dawson’s Creek” and “Don’t Trust the B—- in Apartment 23.”

“It’s OK, to have challenges, It’s OK, to be supportive of people with challenges,” Fleischmann wrote on her Facebook page introducing the video. “And it is not all right to make fun of individuals with CHALLENGES because we all have them too.”

Fleischmann has become a major voice of autism awareness. She first gained notoriety when a video giving insight to how she processes the world went viral in 2012. It’s since been viewed millions of times and brought well-deserved attention to her book “Carly’s Voice.

“Speechless With Carly Fleischmann” will continue with monthly episodes. Next month’s episode features actress Beth Behrs, known for her role on “2 Broke Girls.”

You can watch the latest episode of “Speechless With Carly Fleischmann,” below. 

2k
2k
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.