Two photos side by side, one of a boy sitting on the floor of his room, the other of the boy with colorful images around him like a train, butterfly, and Mona Lisa painting

The Relief I Felt After My Son’s Autism Diagnosis

987
987
1

Relief. That’s the best word I can come up with to describe how I felt when we were given the autism diagnosis. Not scared, sad, angry; just relief.

After all, nothing changed. He was the same sweet, adorable, funny guy he was before the diagnosis, but now we had answers.

Now we knew why he had trouble looking us in the eye when we spoke, or why he chose to sit alone at the computer for hours and hours when the neighborhood kids were outside enjoying the summer. Now we knew why he used unusual or sophisticated words for a child his age to explain his obsessions and why he’d sometimes say inappropriate things at inappropriate times. Now we knew why he stood like a tree when we gave him a hug, but surprised us with hugs on his own terms.

We were suddenly empowered with the ability to help him navigate through life thanks to all the wonderful resources we now have at our disposal, both online and in our community. Now we could use those resources to advocate for him in a meaningful way.

Relief. Because nothing has changed, except our perspective.

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

Artwork by contributor

987
987
1

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

7 Positive Ways Self-Advocates, Parents and Educators Are Spreading Autism Awareness

280
280
0

When April is over, autism awareness must continue! In fact, it should never end, even when the public becomes more accepting and inclusive of autistic individuals. As people evolve in their understanding, what we talk about in terms of awareness will change. It’s important that we keep the conversations going so we can demystify autism. No, our work as a community is not done. In fact, we are just beginning.

Here are some interesting ways that self-advocates, parents and educators are spreading autism awareness in their communities:

1. Give kids a Marvel-like experience.

James and Jonathan are self-advocates who think the best way to talk to kids about autism is through a marvelous Marvel-like universe called The Mighty League. Using a comic, they share what it’s like to be on the autism spectrum. The dynamic duo has been busy inspiring kids to become Superheroes of Acceptance! Ambassadors of Kindness! Friends of Friendliness!

Did you know that you can get their Mighty League comics for free? Find out more…

Jonathan and James at a Mighty League assembly, with children sitting and watching the presentation

2. Take people on an adventure.

Forget Pokémon GO. Courtney and her son Liam from A Legion for Liam are showing their community that Autism Rocks! They decorate rocks with facts about autism and place them around their town, like park benches, water fountains, and door frames. They just want to make people smile as they spread awareness. “We’re having fun and people have messaged me that they have found them.”

3. Bring “Julia” to school library.

Using Sesame Street’s “Julia” as her inspiration, Eraj made a colorful display and brought it to her son’s school to educate elementary-age children about autism. Her life-sized Julia cutout caught the kids’ attention! What’s next for this mom advocate? “I’m working on getting this into our public libraries and other schools in the neighborhood.”

4. Shine a spotlight on self-advocates.

Stefanie of the Starfish Social Club is giving her students a wonderful way to self-advocate and educate their community about autism. Twenty-five are stepping into the spotlight to tell their stories on video. Once completed, they’ll show it at their schools. How empowering!

5. Graffiti a high school hallway.

Lisa from Quirks and Chaos has been an active positive advocate for awareness and inclusion since her son Tate’s autism diagnosis at a very early age. She created the very successful lunch buddy program that has helped Tate make lifelong friendships. Lisa never stops coming up with creative ways to educate others. For Autism Awareness Month, she graffitied the hallways of her son’s high school with comic strips about autism.

6. Be inventive in your storytelling.

Mandi captured her son’s story in The Littlest Inventor, a children’s book about the self-advocacy of a child on the spectrum who finds inventive ways to manage his sensory processing issues. The book has opened a lot of doors for Mandi and her son, Sawyer, to help inform people about autism. “I don’t want autism to be stigmatized, and I want my son and all kids to be confident in themselves and their abilities; that’s why it’s important to me to talk about autism.”

7. Hashtag for better understanding.

Trisha is a teacher who’s trying to make a difference for other teachers and for students on the autism spectrum who deserve a better education. Her popular blog is a favorite go-to resource for educators looking for advice, training and support for working with autistic students. She recently launched a hashtag campaign to give autistic individuals a chance to be heard. #WIWMTU is an opportunity to say “What I Wish My Teacher Understood.”

This article originally appeared on Geek Club Books blog and they ask: What actions are you taking or what ideas do you have for spreading kindness, awareness and acceptance? Join our Acceptance Ambassadors and let us know what you’re doing!

280
280
0
TOPICS
, Contributor list
JOIN THE CONVERSATION

John Benjamin Haygood, 10-Year-Old With Autism, Arrested at School

1k
1k
56

Last week, John Benjamin Haygood, a 10-year-old on the autism spectrum, spent a night in a juvenile detention center after he was arrested at his local school in Okeechobee, Florida. In October, Haygood kicked and scratched his paraprofessional educator and was suspended from school. Haygood returned to school on April 12 to take mandatory standardized tests, and upon returning, was arrested.

According to the Washington Post, due to the October incident, a warrant was issued for Haygood’s arrest, which charged the boy with battery on a school board employee, a third-degree felony.

Haygood, who was diagnosed with autism two years ago, was given an individualized education plan (IEP) and a paraprofessional educator last year. However, Haygood’s mother, Luanne Haygood, told NBCMiami, her son was having issues with his aide and did not feel safe with him. Despite these issues, the school would not assign a new aide.

“The district routinely assists students by providing services from our board certified behavioral analyst, licensed mental health counselors, school social workers, and psychologists,” a representative from Haygood’s school told the Washington Post. “As a team, these individuals develop interventions, conduct assessments, and offer support both at school and in the home in order to assist students and families.”

Haygood’s mother, Luanne Haygood, who originally filmed the arrest and shared it on Facebook, told the Post she just wants her son “to have the same education every other child is entitled to and receives.”

Haygood is due back in court on May 11. The State Attorney’s office told NBCMiami they didn’t know Haygood was on the spectrum at the time of the arrest and will take his diagnosis into consideration when deciding how to proceed.

“People with autism have communication issues, and law enforcement officers need to be aware that their typical approach when responding to a call or an emergency situation with someone with autism spectrum disorder may not work,” Stephanie Cooper, the founder of Autism Law Enforcement Response Training (ALERT), previously told The Mighty. As part of her organization, Cooper, a former police officer whose son is on the spectrum, trains police officers how to interact with those on the spectrum.

“Officers [need] to take their time when dealing with an individual with autism, to allow for delayed responses, to speak slowly and clearly to an individual with ASD and to be aware that autistic individuals react to their environment,” she added.

1k
1k
56
TOPICS
JOIN THE CONVERSATION

4-Year-Old on the Autism Spectrum Denied From Boarding Southwest Flight

13k
13k
203

Last week, Adonis Roman, a 4-year-old on the autism spectrum, and his family were prohibited from boarding their Southwest Airlines flight to Boston because Adonis required accommodation, according to his mother, Jocelyn Roman.

Posting her family’s story on Facebook, Roman shared:

My 4 yr son Adonis is autistic and simple everyday tasks like waiting in lines, and being in unfamiliar places can be extremely overwhelming for him. Visual calendar, countdowns, and keeping him in the know are essential to his development. With that being said certain accommodations must be made to avoid certain behaviors and or meltdowns. I tried to explain this to their ticket agent, who quickly cut me off, slammed her hand on the counter, and made my family and I step to the side.

“The only accommodation we ask for is to board the plane before it gets too crazy,” Roman told The Mighty. “Typically right after the wheelchairs and supported walkers.” After being told to step aside, Roman tried to explain to the ticket agent why boarding early is imperative for her son. The agent repeatedly denied Roman and her family from boarding and asked for documentation and proof that her son is on the spectrum, Roman told FOX25.

As the Roman family waited, Adonis began getting anxious, rocking back and forth and stimming orally. “The attendant at this time called for back up via supervisor, security and deemed it necessary to have EMS evaluate my son for some sort of contagious illness.”

Emergency Medical Services quickly cleared Adonis, and once again, Roman attempted to explain her son’s needs to flight staff. “Instead the supervisor proudly told me that no accommodations would be made and due to my attitude my son would suffer and we would have to wait for the next flight,” Roman wrote in her Facebook post.

Eventually, Roman was able to talk to a manager, who apologized, but the family still missed their flight, forcing them to stay another night in St. Louis. Southwest payed for their hotel, offered $200 flight vouchers, and eventually reimbursed the St. Louis-to-Boston leg of their flight.

The company has since been apologetic, but Roman said there is more airline companies can do to support families on the autism spectrum. “Just respect the diagnosis,” Roman told The Mighty. “It’s not contagious, it’s a developmental disorder. Something as easy as boarding the plane first would have allowed him to have a couple extra minutes to get comfortable and acclimate himself with an unfamiliar environment.”

Update: A spokesperson for Southwest told The Mighty: 

Southwest Airlines is committed to providing courteous and efficient service to all customers. Prior to the flight, a customer became ill in the boarding area and our employees contacted paramedics for help. Our employees then re-booked this customer and his family on a non-stop flight while also providing them with a hotel and travel vouchers. If we have reason to believe that a customer will need medical intervention during a flight, we may require a medical certificate and/or evaluation from trained medical professionals to safely clear the customer for travel. We reached out to the family and we hope they will give us another opportunity to serve them in the future.

13k
13k
203
JOIN THE CONVERSATION

The Clarity My Autism Diagnosis Has Brought Me

1k
1k
8

I’ve been diagnosed and labeled with all sorts of things in my life, spanning the full gamut of medical and mental health issues, and while most transitions in my life seemed to bring about a host of new symptoms and resultant diagnoses, nothing really tied the whole picture together. Nothing ever truly explained why I felt so different, so off, and so close yet so far from everyone and everything I wanted to be. The one consistent thing in my life seemed to be the fact that I struggled with things other people didn’t seem to struggle with and that I also didn’t know how to articulate these challenges. The irony was, for a person who is exceptionally gifted at finding patterns, I saw no method in the madness, no similarity in the symptoms and difficulties, and no way to predict or understand when something was going to be tough for me.

It wasn’t until early summer of last year, just before turning 30, that the pieces finally came together: I was diagnosed with autism. I, like many, received what they consider “a late diagnosis,” which is particularly common in women because of both a lack of understanding in terms of the presentation of autism in women, leading practitioners to miss the diagnosis, and to our uncanny ability to camouflage amongst neurotypicals by learning and emulating their behavior. (We can be good at memorizing patterns, even in social behavior.)

For me, autism explains so much. It’s funny, because I think one of the symbols used by the autism community is the puzzle piece and although I don’t know much about this, I do know that for me, receiving this diagnosis was like finding that puzzle piece (or two) that slipped under the rug and finally fills the blatant gap in the middle of what should be a complete picture. In my own ignorance, I had no idea what autism was really like, especially in women, for which it can be quite different than media portrayals.

For most of my life, I feel like I’ve lived two lives that are concurrent but not parallel. They bump into one another, they pull and push, they fight me for dominant expression because in any given moment, only one really gets to show its face. I have the life that I try to live externally: Here, I am a student of the world. I constantly observe, catalog data, categorize, and try to present myself the way I see in those around me. I carry on conversations by learning what to say, I go out, I laugh, I try to join activities, I work. This life exhausts me because it’s foreign to me. It’s a constant game of trying to understand, of calculating, of interpreting. It is somewhat like playing a character. It’s stressful because there is always the risk of messing up, which could open the windows for the other part of me to come out, to expose my weirdness. It wipes me out so much that prolonged periods of such behavior caused doctors to be concerned about my physical health: was it chronic fatigue, lupus, another underlying autoimmune issue?

The other part of me looks just like everyone else at first glance. But I’m different. This part of me can’t stand the feeling of socks, tags, certain shoes, or seams so much so that it causes vomiting. It prevents me from tolerating things touching my skin in certain ways. I can’t wear my hair down and people call me a tomboy. Some people who have known me for 10 or 20 years have never seen my hair down. This part of me can’t take noises, especially repetitive ones. I can’t tolerate certain food textures without gagging, and while in full disclosure I did have an eating disorder as a teenager, I have since learned this can be unfortunately common for women on the spectrum for a host of reasons, one of which I imagine is sensory-based. My list of sensory issues is so vast that it could be its own tome, but I will just say, for me at least, it is the most difficult part of my autism. In addition to affecting the five senses everyone thinks about, it also impacts proprioception, vestibular function, and what is known as interoception (the ability to sense internal stimuli such as hunger, body temperature, the need to use the bathroom, etc.). The sensory processing challenges of autism make it hard to be comfortable in my own skin, in the “comfort” of my own home where we can control the environment as much as possible. The real world? That’s a minefield of sensory bombardment; it’s one of the main reasons pretending to be “normal” is so exhausting.

The sensory challenges aren’t the only difficulties that the “real me” faces, and I’ll go into these more classic ASD-related difficulties another time, I imagine. The sad truth is that women, particularly undiagnosed, on the spectrum are at risk for various comorbidities like major depressive disorder, eating disorders, sexual assault, among others. Unfortunately, all of these have applied to me and I suffer the consequences of them today. While I could get into each of them separately and maybe will eventually, I share this because it’s one of the main reasons I’m choosing to speak up about my autism. Yes, it’s true that people on the spectrum (and people who aren’t) have lots of wonderful gifts. And yes, it’s true that we can blend in very well and “act normal,” and it’s true we can be successful in work, relationships, and life. But it’s also true that autism isn’t a minor challenge. It’s a real diagnosis that indicates a difference in the brain. Our brains aren’t worse, they aren’t better, but they are different. The issue with late diagnosis for me is that it further engrains the feeling of “differentness,” of confusion, and can exacerbate the challenges of the “disorder.”

My feelings of weirdness, loneliness, and a lack of belonging and understanding myself has caused major self-esteem issues and depression, so much so that at times in my life, I’ve been heavily medicated and suicidal. My inability to sense danger and to read people well likely contributed to my attack. That single day saddled me with what I will honestly admit is pretty debilitating PTSD. While I’m doing a lot better since that trauma in many ways, quite frankly, I have no confidence it won’t happen again unless I avoid people, which I don’t want to do. Had I known I was autistic younger, I may have devoted more attention and invoked more specific training to understand predators or at least how to defend myself. If nothing else, it may have alleviated some of the blame I put upon myself for so long.

I want to make it clear that I’m not bitter or upset that I wasn’t diagnosed earlier. I don’t blame all my weaknesses, challenges, and poor choices on being autistic. Receiving the proper diagnosis, even if “late,” simply provides more clarity for which to understand myself and learn to cope better, love myself more, be a better partner and friend, feel healthier, recognize red flags or challenges before they derail me, and feel less alone and confused. The day you stop learning and growing is the day you stop living. My goal is to begin to embrace who I am, to get to know myself better, to let others into my world a bit more, and to do my piece by opening up a little so that more people are aware of the tribe of autistic women. My hope is that increasing awareness will bring earlier diagnosis and possibly prevent some of the battles I faced for younger girls on the spectrum.

An autism diagnosis doesn’t guarantee the struggles I have, it doesn’t justify my mistakes or shortcomings, but it is a bit like finally getting glasses when you’ve been squinting, stumbling around, and seeing everything blurry for years. I guess this analogy is particularly apropos for me: I just got glasses! So, to each person that reads this, whether I know you or not, thank you for your time, your interest in this topic, and for helping me start this discussion. Please connect and question me in any way that feels right to you. We are all at different parts of our journeys and in different paths but ultimately, we all, I hope, are just trying to do our best.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

If you or a loved one is affected by sexual abuse or assault and need help, call the National Sexual Assault Telephone Hotline at 1-800-656-4673 to be connected with a trained staff member from a sexual assault service provider in your area.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

Follow this journey on Processing Problems.

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

Thinkstock image by Delpixart

1k
1k
8
TOPICS
JOIN THE CONVERSATION

Coding Autism Teaches People on the Autism Spectrum How to Code

3k
3k
1

Across the U.S., more and more companies are looking for web developers as well as people who can code. This field of job growth can provide significant opportunities for autistic individuals, Coding Autism, a new training program for people on the autism spectrum, believes.

“Coding is a great career for people with autism because many of the traits associated with people on the spectrum correlate with those of a successful coder,” Austen Weinhart, co-founder of Coding Autism, told The Mighty. “Some of these traits include attention to detail, talent for recognizing patterns, comfort in repetition, introvert personalities, and directness in communication. With the right training and accommodations, a person on the autism spectrum can transition into a position where they not only have financial stability but also long-term career growth.”

Coding Autism is currently crowdfunding for its first web development boot camp and hopes to raise $50,000 to provide full scholarships for its first group of students. Its first course, ASPIRE Web Development Immersive, will be a 15-week, full-time course in Thousand Oaks, California. The course will teach coding basics, preparing students for an entry-level job as web developers. Coding Autism also plans to launch online classes for those who cannot attend in person, starting in 2018. So far, the campaign has raised more than 60 percent of the funds it needs to get started.

“It is completely unacceptable that our autistic community is experiencing an over 80-percent unemployment and underemployment rate,” Oliver Thornton, Coding Autism’s CEO and co-founder, who is also on the autism spectrum, said in a press release. “As passionate advocates who have either been diagnosed with autism ourselves or have family members affected with autism, we understand that with the right resources, training, coaching and environment that individuals with autism can thrive in the workforce.”

In addition to teaching software engineering, quality assurance, and web development, Coding Autism will also assist its trainees in finding jobs. Coaches and educators will provide students with resume workshops, career counseling and interview preparation all of which is designed specifically for autistic individuals.

The training program is a certificate program and not a degree. “Many coding jobs also do not require a degree. All that matters is that applicants show that they have the skills needed and are up to the task,” Weinhart added.

Many companies, including Microsoft and Hewlett-Packard, have launched hiring initiatives geared towards employing those on the spectrum. “The vast majority of people with autism are either unemployed or underemployed, leaving a large pool of untapped talent. If we work together, we can help make a difference,” Neil Barnett, director of inclusive hiring and accessibility at Microsoft, wrote on the company’s blog earlier this month.

With more opportunities arising, Coding Autism hopes to help more people on the spectrum enter the job force as prepared and qualified applicants.

3k
3k
1
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.