Why I Wanted the Autism Label for My Son


There’s a saying you might have heard, “If you meet one person with autism, you’ve met one person with autism.”

Sometimes I wonder if only those who really know someone with autism get how little others understand this saying. Not everyone who has autism has the same characteristics or traits. Just because your friend’s child with autism doesn’t make eye contact doesn’t mean my child won’t either. Just because the man with autism you worked with has a photographic memory, it doesn’t mean my child does, too.

There is a reason it’s called autism spectrum disorder, and in case it’s not obvious, the key word is “spectrum.” Everyone with autism is unique and the spectrum is huge.

Primarily, my 5-year-old son, Brody, has an undiagnosed genetic disorder with a secondary diagnosis of autism spectrum disorder and epilepsy. We are members of a great charity called SWAN UK (Syndromes Without a Name) who support families like mine, who have children with no overarching diagnosis to explain all of their symptoms. And we are part of a huge genetic study, called the Deciphering Developmental Disorders (DDD) to try and find answers.

I regularly hear stories that it wasn’t easy for parents to get an autism diagnosis for their child. It wasn’t straightforward for us, either.

Brody’s pediatrician was reluctant to diagnose him in case his autistic traits could be part of his undiagnosed syndrome. But the truth is, we may never find out what syndrome Brody has, so I was keen to make sure he had a diagnosis of autism. Thanks to his speech and language therapist, he received it last year.

I wanted a diagnosis, like so many others, because sometimes a label can help. Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support.

Too many of us know that when you have a child with disabilities, you sometimes have to fight for help and services. Without a diagnosis, this fight is a lot tougher. A diagnosis can help you win some of those battles, even if it’s not all.

And when Brody is upset because a hand dryer has gone off in a public toilet, simply saying he has autism can sometimes help to explain his behavior to those around us.

For me, that helps.

So, what’s our autism story? Well, it doesn’t look like the “Rain Man” type characters you often see portrayed on television.

I hate the term high or low functioning. It’s uncomfortable, clinical and rude. After all, we’re talking about human beings. We’re talking about my beautiful child.

Brody has a learning disability and struggles with understanding. He is nonverbal and dependent on adult care. He needs help with personal needs. He has impulse control and sensory issues. He can laugh and cry in what appear to be inappropriate ways. He has no danger awareness. And at this point we don’t know if he will be able to live independently.

But regardless of these facts, Brody is not defined by his autism or any of his disabilities. He is Brody — our brilliant little boy who is much more than these things.

Brody, who can look you straight in the eye and share a laugh with you, like only you and him are in on the joke.

Brody, who likes to be pushed in his swing or spun around in his IKEA egg chair.

Brody, who loves the car wash.

Brody, who likes to use your hand to point to things in books.

Brody, who could eat an impressive amount of McDonalds’ Chicken Nuggets if given the chance.

Brody, who loves to be tickled.

Brody, who although is up at the crack of dawn each day, loves to lean against you downstairs in the dark and snuggle (with his iPad of course) so you can get over the tiredness a little easier.

Brody, who has a smile that will light up the darkest of rooms and who has the best sense of humor.

I’m glad our son has an autism diagnosis — and I’m pleased that this diagnosis can hopefully help to ensure we can get him the right support he needs as he grows older.

But admittedly, I hope people don’t hear the word autism and just see a label.

I hope they see Brody — just like we see him.

For all of the wonderful things he is.

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Understanding My Son on the Autism Spectrum When He Doesn't Use Words to Communicate


My son and his classmates made their way from the doors of the school to the playground where parents gather to pick them up. My son let out a little groan and whine, which is almost always a prelude to tears.

“What’s wrong? What happened?”

My questions were met with silence.

My son then got distracted by the busyness surrounding him. He watched eagerly as kids went up and down on the see-saw, and he pulled my arm as he rushed to see his classmates board their school bus. Although it seemed like he had forgotten whatever it was that upset him as he exited the school doors, I knew better than to assume it was nothing.

For me, having a child on the autism spectrum who is partially verbal means no moment of sadness, anger or even joy can be dismissed without further investigation. While parents of children with strong verbal skills can often rely on their child to give them a play-by-play account of their day at school, I’ve learned to rely heavily on my son’s body language, unique methods of communication and the comparison of his past and present behaviors to gain insight about what he’s experiencing when he’s away from home.

“Does school make you happy or sad?” I asked while pointing to little pictures depicting various emotions given to me by my son’s behavioral therapist.

“Happy. Sad.” He answered. I thought he seemed a little confused.

While gently and playfully asking him simple questions about the things he did at school that day, and who he did them with, he became visibly upset at the mention of a classmate’s name. It turned out my son was pushed while playing and his feelings were hurt, but he still considered the kid who pushed him to be his friend.

In the days that followed, I monitored my son closely for changes in behavior and moments of sadness or anger that might indicate there were problems at school, but thankfully there were none. If his sadness had persisted, I would have taken the next step and arranged a meeting with his classroom teachers to gain a full picture of what was making him unhappy at school.

Over time, I’ve learned the more I focus on learning and understanding my son’s moods and behaviors, the more I understand what he’s saying even when he doesn’t use words. When sadness begins to cloud his typically sunny disposition, I know what something is wrong no matter who may try to persuade me otherwise. I’ve taken the time to learn his unique ways of communicating and I’ve gotten to know what gets him down and what makes him happy. When I slow down and take the time to listen to my son’s nonverbal communication, I realize his messages are loud and clear.

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The Relief I Felt After My Son’s Autism Diagnosis


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.

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


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!

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


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.

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


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.

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