When I Write About Parenting a Child With Autism for the Mainstream Media

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I’m not entirely sure why I write about my personal experiences parenting a child with autism for the mainstream media – mostly I hope my own experiences may help someone else on their autism journey – and they won’t stumble through as I had done in the early days. Parenting is challenging, joyful, frustrating, heart-wrenching and rewarding all jumbled together. Making those experiences heard is also an important step toward wider acceptance of autism in the community at large.  

But what I’m never quite prepared for are the letters I get whenever I publish something about autism in the mainstream press.

Here are a few responses that never fail to happen:

1.  Someone writes to tell me vaccines cause autism.  

The study that kicked off this speculation was proven to rely on falsified data, and the author had financial motives for making up his findings. The journal retracted the study years ago. If that’s not enough to placate, there have been dozens of significant studies trying to establish such a link just in case, and all of them came to the same conclusion: there’s no relationship between autism and childhood vaccinations. End of.

2.  Someone writes to tell me they have the “cure” for autism.

The people who send me these kinds of letters are either snake oil salesmen preying on parents purely for monetary gain but also people who really think they’ve single handedly stumbled on the “cure.” In either case, save your breath. There’s no known “cure” for autism. Yes, many studies have shown there are some excellent therapies (behavior, speech, occupational, sensory, drug, diet) that may help enhance certain abilities or address certain challenges in some individuals with autism.

But we’ll all be better off if we stop seeing the individual with autism as “sick” or “broken” and in need of a “cure,” and instead provide them with the supports they need to thrive in the community.

3.  Someone writes to tell me I’ve caused my son’s autism.  

Yes, really. I like to call them jackasses, but I believe other journalists call them trolls. Turns out, trolls don’t just save their bullsh*t for political commentators but share their misery with parenting columnists too.  

I’ve been told my son has autism because: I fed him formula as a baby (no), I was on anti-depressants while pregnant (nope), I fed him genetically engineered foods (sigh) and, of course, because I had him vaccinated (of course I did – read #1). One special jackass told me it was karma.

4. Someone offers me money. 

See — it’s not all bad. Strangers also offer to send me money to help me parent my son with autism. It’s just the sweetest gesture and my faith in humanity is always restored by these letters. I thank them but always kindly decline and recommend they give to a local autism charity instead. There are many autism families that are in far greater need than myself (raising a child is expensive – raising a child with autism is astronomical) and the frontline autism charities are the best at putting resources where they are needed most.  

5.  Someone offers my son gifts.

Many, many readers want to send my son gifts. It happens every time I write. It is such a beautiful gesture, and I am touched by every offer. But again – for reasons of protecting privacy and because my son is already spoiled rotten, I always say no. Again, I recommend they donate to an autism organization, and I think many of them actually do this.

People, it turns out, can be very kind.

I did accept one time: when the city transportation office offered a tour of the local bus facilities after a story about how much my son loves city buses (he memorizes the routes and “articulated bus” was one of his first toddler phrases). They gave us a half-day tour and a goodie basket full of bus-related items. My son still talks about it today.

None of these responses ever stop me from writing. In fact, the first few make it clear how badly I need to keep writing to combat the misinformation that’s still floating around out there. But the best news? The kind gestures always outnumber the jackasses.

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3 Tips for Dealing With Roommates When You Have Autism

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Chances are, at some point in your life you are going to live with a roommate. If you have autism, here some tips on making it the best experience possible.

If you have any ideas for videos you’d like to see, please send me an e-mail to [email protected].

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Barber Launches ‘Superhero’ Group to Help Give Kids With Autism Haircuts

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You might remember our story about hairdresser James Williams, who was photographed getting on the floor to help a boy with autism feel comfortable during a haircut in November. Williams, based in Wales, wrote on his Facebook page that he was merely trying to figure out how to cut his young client’s hair without upsetting him. The story went viral, and since then Williams has been approached by a number of parents of kids on the spectrum looking for help with haircuts.

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Image courtesy of James Williams

Williams told The Mighty he opens his shop every Sunday for children with autism, but he wanted to do more, so he teamed up with several other barbers in the U.K. to launch the Autism Barbers Assemble group. Their mission is simple. “We go by the ‘ABA TEAM’ as superhero barbers to help children on the autism spectrum get past the fear of a haircut,” Williams told The Mighty.

Autism Barbers Assemble
Image courtesy of James Williams

So how does Williams get the job done? He says it’s a simply a combination of being patient and getting to know his customers. Last week he posted a video with Seb, a boy with autism. “It’s his first visit to my barbershop and this is where I will hope to get a breakthrough and show how I work with children on the spectrum,” Williams wrote on his Jim The Trim Facebook page.

First session on live stream with Seb who is on the autistic spectrum, it’s his first visit to my barbershop and this is where I will hope to get a breakthrough and show how I work with children on the spectrum and to show how they respond and act 🙂 Davie Walker Chris Moon Anthony Copeland Rhys GreenJac Ludlow Pat BarryTyra Leanne Grundy Eric Begg Alan Beak Lynndy Rolfe Scott Michaels Gareth D Clark Srb Gary Cox Srb

Posted by James Williams on Sunday, February 28, 2016

 

Autism Barbers Assemble will host their first event in Paisley, Scotland, and they are eventually hoping to bring their team to the United States.

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Pennsylvania District Judges Take Course to Better Serve Autistic Defendants

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District Judge Tom Swan, of Allegheny County, Pennsylvania, is one of approximately 1,000 district judges in the state now required to take a course in helping defendants with special needs in their courtrooms. Swan has a 19-year-old son with autism, and he explained to the Pittsburgh Tribune‑Review why it’s so important to help professionals in law enforcement and the judiciary system understand the behavior and thought processing of all people.

“If you read [my son] his Miranda rights and asked him if he understood those rights, he would say yes,” Swan said. “But if you asked him what it means, what those rights mean, he couldn’t tell you.”

The Pennsylvania Judicial Code requires every magisterial district judge to complete a 32-hour continuing education program each year, and thanks to an amendment passed in July, the program now includes courses in “identification and availability of diversionary options” for individuals with mental illness, intellectual disabilities or autism, reported the Autism Society of Pittsburgh.

District judge Tom Swan and his autistic 19-year-old son, Kevin, inside the courtroom of his West Deer magistrate's office on Friday, Feb. 12, 2016.
District Judge Tom Swan and his son, Kevin, who has autism. (Photo courtesy of Eric Felack / TribLive.com)

The Autism Society of Pittsburgh teamed up with Duquesne University’s department of counseling, psychology and special education to provide training, which involves a lecture and video.

Dan Torisky, president of the Autism Society of Pittsburgh (and former president of the Autism Society of America), told The Mighty that to his knowledge, this program is the first of its kind in the United States. He explained that it began as a police officer training program, and then moved to cover the entire justice system in the state.

Tammy Hughes, professor and chairwoman of Duquesne University’s department of counseling, psychology and special education, explained to the Pittsburgh Tribune‑Review how such training may help a judge recognize that someone who might be perceived as “noncompliant” for plugging his ears or closing his eyes may actually be experiencing sensory overload.

When asked about their expansion, Torisky told The Mighty, “We are currently preparing courses for defense attorneys, public defenders, prosecutors, higher level judges, and, ultimately, an alternative sentencing judges’ desk book.”

This is the most meaningful work that we have done,” Heidi Buckley, vice president and director of community relations at the Autism Society of Pittsburgh told the Pittsburgh Tribune‑Review. “It’s so practical, and it could be life-changing.”

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Autistic Brothers Create Device Police Can Use to ID People on the Spectrum

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Brad Benjamin, 27, and his brother Kenny Benjamin, 26, have autism spectrum disorder, and they wanted to help others on the spectrum stay safe should they come into contact with first responders during a stressful situation. With help from their parents and the Prince George’s County Police Department in Maryland, the young men have launched the National Autism Registry, which works specifically with first responders.

“The reason why we are excited about this is because this way people would never fear… people with Asperger’s and autism anymore,” Kenny Benjamin told local news station WJLA. “People fear what they don’t understand about us autistic people.”

Registry members receive a wearable USB device with a puzzle piece inside a yield sign, which gives first responders information about the person they’re helping. The brothers showed TV crews a plastic bracelet and a more sensory-friendly version, in which the USB device is embedded in a sweatband and worn around the wrist.

“We are trying to give the officers a heads up on what they are dealing with and train them on how they can deal with it,” mother Joyce Benjamin told WJLA. “My oldest, if he gets anxious, he may get combative just out of fear.”

 

The Benjamins met with Prince George’s County Police Chief Hank Stawinski this week; the department is the first to start implementing the program. Neighboring Maryland counties, including Calvert, Charles, St. Mary’s, Talbot and Queen Anne’s have agreed to use the program, and all parties involved hope police divisions across over the country will join them.

“Having that officer in a position to know in advance that they are going to have a difference perspective on things than some other folks, that helps,” Prince George’s County Police Chief Hank Stawinski added. “And at the end of the day what’s important is that everyone is safer.”

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When We Realized My Husband Has Autism

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My husband Cj and I celebrated 10 years of being together. Ten years since we first met. We actually have three anniversaries (yep), but this one is the one I regard to be the most important because it was this one that marks the date that life as I knew it would be tipped upside-down.

God, my husband is gorgeous. He is the most incredible father who is ever-present for his tribe of girls. He has this cheeky grin, and he has a great sense of humor and makes me laugh a lot. He’s so bright. He teaches me lots of things. He also is fantastic at pulling me up when I’ve taken something too far, and he’ll often be the first person to roll his eyes and sigh with a comment like, “Why must you always insist on learning things the hard way?” (Because that’s me, baby, a bull in your china shop).

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My husband is a 33-year-old male. He also has autism.

We were together seven years before we realized he has autism. It wasn’t until after my eldest daughter was diagnosed after a few years of back and forth deliberation on my behalf that we finally got her assessed and diagnosed — and then it occurred to us that Cj has autism, too.

I knew my eldest daughter wasn’t “neurotypical” from about age 4 in kindergarten.

Back then I didn’t drive. So we walked everywhere. If I walked a different route to kindergarten, she would fall apart. If I didn’t give warning when I planned to change her usual breakfast food, she would not handle it. She never liked to be touched by other kids in kindergarten. She didn’t cope well with singing songs. She would cry and cover her ears when someone sang “Happy Birthday” louder than a hushed tone. She didn’t give good eye contact. She didn’t cope with meeting new people very well. She was rigid in her routine, and there were plenty of routines.

I mentioned these quirks of hers to my husband. He dismissed them as “normal.” He said he didn’t see the issue.

Wanna know why? Because it was his normal, too. He saw no issue with the way she behaved because he could see why. He could understand her triggers because they triggered him, too. And he had many of the exact same struggles when he was young that she was experiencing now. But no one made any connection.

After another very tough year I decided enough was enough. I needed help. My daughter was melting down at the beach. Her screaming would go on for hours and hours. I’d tried everything, and nothing was working.

She was assessed. She was diagnosed with autism. It took a pediatrician an hour to make crystal clear of a bunch of ongoing issues we’d been experiencing as a family for almost two years. I felt relief and direction. When I told my husband he was in shock and also in disbelief.

Ever heard the phrase “can’t see the forest for the trees?” It means sometimes the most obvious answers are directly in front of you, but you just can’t see then because you’re not paying proper attention.

A few evenings later after Sno was diagnosed, my husband and I sat down on the couch together and went through her diagnostic criteria. And it was here that we discovered so many of her quirks were the same as his.

We had been together for seven years by that point. Seven years of being in love, parenting together and living together. We’d only ever had three nights away from each other. Then all the pieces began to fall into place. The reasons behind his social overload and only ever wanting to go out one weekend day now both made sense, along with his exhaustion from talking to people. Even down to the specific way he liked to organize the pantry (hey, who was I to interrupt such beautiful methodology?). We chuckled over just how many things we had automatically adapted to without even noticing.

A few months later my husband went and had formal assessments done and received his official diagnosis at age 30. He greeted it with grief, but also relief.

Which brings me to…

When I said yes to marrying my husband, I said yes to him along with his quirks (which back then I had no idea were due to autism). I loved him for the way he saw the world and how he worked within it. I loved him for the way he can fix anything that is broken, the way he seamlessly adapts to different social situations, his impeccable attention to detail. I love him for the way he can problem-solve. I love him for the way he’s a straight shooter and doesn’t suffer fools. His dry sense of humour.

Looking at the big picture, I guess you could say the things I love about my husband the most are probably his most “autistic” traits. Fancy that!

Autism didn’t change my husband. He’s never not had autism, and it’s what makes him who he is. But maybe his earlier formative years would have been a lot less stressful and hard for him had his autism been recognized. He could have gained the appropriate support and learned strategies at a young age, rather than having to cleverly wing it for over 25 years.

There’s a lot more knowledge about autism now, definitely more than there was when my husband was a child. I guess that’s why we are both passionate about early diagnosis and intervention. Because when you love someone you love them fully and wholly and you want to support them to be the best they can be; whoever that is. And you realize labels don’t define or limit a person’s abilities — but they can offer great insight into the individual’s personality, and enable them to be supported to reach their full potential.

Jessica Offer and her husband, CJ

Follow this journey on girltribe.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Resource: A guide for adults on the autism spectrum.

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