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 community@themighty.com. 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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When a Boy With Autism Asked Me What It Was Like When I ‘Had Autism’

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Last year, I was asked to be a guest speaker at a middle school in Brooklyn for their Peace & Diversity Conference day. I spoke there to a group of sixth-graders and then had lunch with a self-contained class of sixth-graders with autism. I was asked to return again this year, and I made the trek out to Brooklyn at the end of January, just hours ahead of a snowy winter storm.

I can still see him so clearly.

The small one, with thick, black-rimmed glasses that were almost too big for his face, sitting there tugging nervously at the hem of his shirt. He wasn’t as gregarious as some of the other children — not like the one I affectionately refer to as Mr. Mayor, because he probably will be one someday — but he made an impression I won’t soon forget.

It’s not often I have the opportunity to be around sixth-graders, let alone ones who are as self-aware and bright as they were. One by one, they came over to sit at my table and began asking me questions in that combination of wide-eyed innocent and weathered only 12-year-olds seem to do so well. They sometimes spoke over each other, and as their enthusiasm grew, the questions flew out almost before their brains had a chance to finish coming up with them.

Then it was the small boy’s turn. He cleared his throat and looked up at me shyly.

“What was it like when you had autism?”

I pause.

“Well… I still have autism,” I said, the full weight and meaning of his question just starting to sink in.

It’s no secret that most of the media portrayals of autism predominantly feature young children. Autistic adults are given very little of the spotlight in comparison. But perhaps there is more to it than that.

Every day, many children with autism undergo various types of therapies — ABA, floor time, social skills groups and so on. Self-contained classrooms are cropping up in schools all across the country, accompanied by a veritable army of teachers, psychologists, speech therapists, aides and other professionals. All of this in the name of helping these kids overcome challenges, thrive and succeed.

But increasingly, “success” seems to be defined as “no longer appearing to have autism.” Parents, teachers, people with the very best of intentions are doing a great disservice to children with autism if they send them the message that this is only temporary, something they are getting help for now, so that they — and everyone else — won’t have to deal with it later.

In reality, nothing could be further from the truth.

As a child, I did not undergo early intervention. My parents tried one thing after another to help me, a desperate if not futile effort in a world that had little (if any) awareness or understanding of autism. The challenges I faced were many, yet few were greater than the low expectations and doubt in my abilities that others had for me.

Today, I am an autism consultant, a professional public speaker, a writer and an advocate. I’ve surpassed the beliefs of those who said I would not amount to anything, who told my parents I would not graduate high school, let alone attend college. I have a Masters degree, I have my own business, and I have a life that took me years of struggle to build. My story only started because I believed it was worth writing, and even now, it is still being written.

I have overcome tremendous obstacles because I have worked hard to do so, not because I no longer have autism.

The fear of children with autism facing certain challenges for the rest of their lives is overwhelming, and it’s often the driving force for parents and teachers to find help for these children. But because autism is an integral part of who we are, overcoming those challenges does not and will not suddenly make us neurotypical. It just means we grow up and might have those challenges replaced by new ones.

Therapies have their place and can be meaningful and effective tools for assisting autistic children and their families. But preparing your child to be an adult with autism is the best and most important thing you can do to help them live in this world.

I hope I will get to see that little boy with the thick-rimmed glasses again.

I hope he grows into his striped shirt, grows into the person he’s going to become, a person who will give so much to this world. I hope he knows how special he is and that he can be autistic and succeed, be loved, be a friend and be just exactly who he is.

All of our children can.

A version of this post originally appeared on Amy’s Tiny Corner of Existence.

Lead photo source: Thinkstock Images

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What I Want to Tell the Mom Scared of Losing Her Connection to Her Son With Autism

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Eleven years ago this fall, I sat in a cramped, fluorescent-lit examination room with my husband and then 17-month-old son. We were there following a several-month wait for what we assumed would be an autism diagnosis. A few months prior, our pediatrician had shoved a few ill-copied articles with the word “autism” in the title, practically pushed us
out the door and told us to consult a developmental pediatrician.

I had been alone at the appointment as it was just a routine sick visit related to my son’s reflux, and it had been the first time our pediatrician had shown any concern regarding our son’s development. I remember clutching those articles to my chest, placing my son Justin in his stroller and stumbling out the door, hot tears wending their way down my cheeks as other moms stared at me.

It was a day no amount of chocolate could mollify.

Our visit to the developmental pediatrician was in sharp contrast to that day, as she couldn’t have been kinder as she assessed our boy. She made a point to single out all the skills he could do and emphasized how obviously attached he was to both me and my husband. She gave Justin a diagnosis of PDD (pervasive developmental disorder) that morning and told me to follow up in six months.

I remember the diagnosis came along completely coupled with relief that we had an answer to his differences.

I say almost because that diagnosis also brought with it fear that he’d regress, that we’d lose that special closeness we’d created for a year and a half all those long, sleepless nights. I was too afraid to ask during our visit if we’d be in danger of losing that unique connection; I managed to relegate that fear to the darkest recesses of my mind.

And I wish I could go back in time and tell that scared mom that her fears would be unfounded, for I can’t even count the ways my son shows his love.

There is the ceremonial “blowing of the kiss” from his bus window.

The times he stops what he’s doing and just plants one on me for no apparent reason.

The way he comes up behind me and hugs me to show his joy.

The way he curls up on my lap each night like a comma, snuggling his cheek into my shoulder just as he did when he was a toddler.

Eleven years later, our son’s still predominantly nonverbal, and he might never marry, drive a car or live independently. I will forever worry about what will happen to him after I die.

But right now, we have this. An unbreakable connection forged in fire, one perhaps more profound because of his autism, his unique world view.

We have that.

We will always have that.

Follow this journey on Autism Mommy-Therapist.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. 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.

Lead photo source: Thinkstock Images

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A Boy Wrote My Son With Autism a Note That Led to an Amazing First

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You wrote him a short note saying you thought karting sounded interesting and asked if he could tell you about it. All we can say is thank you. Thank you for giving Anthony the opportunity to write. Thank you for providing him with motivation. Thank you for allowing him to show what he knows. Thank you for giving him confidence in himself. Thank you for showing him someone cares about what he thinks.

As a boy with autism, Anthony’s interests tend to be very focused, and he can have difficulty engaging in conversations or tasks not associated with what he’s interested in. Some people with autism can turn their special interests into an advantage, such as a career, hobby or a way of relaxing. Anthony revels in talking about and doing anything to do with his current special interest, motor racing. What happened when one boy took an interest in Anthony’s topic was, to us, amazing.

Anthony has no problem talking about racing. Indeed, sometimes you can’t stop him. This currently includes being able to script all the highlights of the 2015 Formula 1 season from the television. When he appeared for show and tell in his full karting gear, it was deemed the “best ever” by the class.

What really challenges Anthony at school is writing. Anthony has autism, ADHD, sensory processing disorder and hypermobility. In short, he can find it difficult to hold a pencil, feel what the pencil is doing, concentrate on what he is supposed to be writing and can find it physically tiring. It’s no surprise that Anthony has never written more than a single of page of work at school. He is also very concerned about getting things wrong so he will make sentences short, using small words so he is less likely to get tired or make a mistake. This has hindered his practice and confidence.

handwritten letter
The first page of Anthony’s letter.

But thanks to a friend of a friend from school, Anthony has suddenly surpassed himself.

Following this kind gesture, Anthony was able to let go of worries about getting everything exactly right; he was able to write as he would talk. He produced three pages of words, which talked about karting and showed the world he has an understanding of principles such as counting, friction and forces.

I have transcribed his letter underneath:

To Henry,

This is my Kart. It’s black, it’s very good and it’s got a full tank and it’s got a speedo. I wear a rib protector and a karting suit, and I wear karting shoes, and I wear karting gloves, and I wear a balaclava, and I wear a helmet and I wear a neck brace. These are the tracks I have been to: I have been to Surbiton, Daytona, Clay Pigeon, Rye House, Camberley, Barford Meadows and Thruxton.

My Kart goes very fast. My kart has got an engine and it’s got pedals. It has a radio just for information. Sometimes I drive on my own and sometimes I drive with boys and girls. You have to be a bit older to practice at some tracks. My kart has got very grippy tires and it has got worn-out tires and it has got dry tires.

The dry tires are very slippery because they are very cool. But when I get them very hot they’re going to be faster than the worn-out tires. My kart has got three engines. You do have to be a bit older to do kart races.

Love from,
Your friend**

boy in kart
Anthony in his kart.

Follow this journey on Rainbows Are Too Beautiful.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to community@themighty.com. 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.

**This passage has been modified for clarity.

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Autistic Woman Writes Book for Kids Who May Wish They Were ‘Off the Spectrum’

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Rochelle Caruso Flynn was going through a difficult time professionally when a pediatrician colleague told her this: “You understand patients in a way I never could. You should write a book about your unique perspective.”

Flynn, 45, didn’t think too much into it at the time, but the idea stuck in her head. As a woman “on” the autism spectrum, she often felt different; she knew others might view her social behavior as “quirky” or even “inappropriate,” and began to picture a child who desperately wished to be “off” the spectrum. From this, the basic concept of “Floppy Lop-Ears,” an autistic bunny, was born. About a month later, she produced a full-length version of the tale: “Floppy Lop-Ears Tries to Get ‘Off the Spectrum.”

floppy lop ears book cover

In the book, upon learning he has autism spectrum disorder, Floppy Lop-Ears sets out to get off the spectrum. He “tries to make himself ‘better,'” but soon discovers “sometimes being different is the only way to really find acceptance.”

Flynn, from Philadelphia, hopes her story will help children with autism see that, while their challenges may make life more difficult, autism comes with “many positive things that make those who have it special in ways that should be valued, appreciated and even admired.” She also wants people unfamiliar with autism to understand why those on the spectrum may act a certain way — that “inappropriate quirks” are “also incredibly valuable in certain careers or circumstances, and those are the things that should be focused on.”

“Just because someone is different doesn’t mean you should reject them,” Flynn told The Mighty. “Understand them better.”

For kids and teens on the spectrum, Flynn offered this advice:

It [can be] so hard to be on the spectrum sometimes! No one wants to feel different. It is important to trust your family, friends and caring teachers to help you. You have something that makes you unique and special. Value this and participate in therapies that can help you understand the difficult world of social skills. Not giving up what makes you you, but learning how others not on the spectrum talk and act sometimes can help to form a bridge between these two different worlds. Hopefully you have supportive family and teachers or counselors who can help you navigate through and find your own special place in life where your special gifts shine!

Sometimes you have to allow yourself to have a bad day, but having a way to decompress is important. Understanding yourself, your “triggers” for meltdowns, your sensory sensitivities… these can help ease the inner anxieties. It is about finding a balance, pursuing your dreams and never giving up.

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Mom Pens Passionate Response to Shoppers' Comments During Daughter's Meltdown

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Sammi Ovington enjoys shopping with her 3-year-old daughter Skye, but these outings can become stressful if Skye experiences a meltdown. Skye has autism, pica and hypermobility syndrome, and after receiving a number of insensitive remarks from strangers while trying to help Skye through her meltdowns, Ovington took to Facebook to respond.

“To the people just staring at me, whispering to each other and the blatant judging of my parenting, I hope your children don’t have bad days like this,” she wrote in a Facebook post that has now been shared 3,800 times.

Ovington told the Daily Mail she wrote the post when she was angry, but she’s pleased with the response she’s received. “I love taking my little beauty shopping,” she wrote at the end of her Facebook post. “I will not apologize if she is an inconvenience to your shopping trip!”

Read the Facebook post in its entirety below:

Dear passers by,

This is Skye. She’s 3 years old. She has autism spectrum disorder, pica and hypermobility syndrome.

To the lady in Paperchase telling me Skye was naughty, I’m irresponsible and I shouldn’t give her things before I’ve paid for them, thanks for your input. Pica is a disorder where she feels the uncontrollable need to eat non edible things. Skye’s thing is paper. I’m sorry she ate the barcode before we paid but she isn’t naughty and I am not irresponsible.

To the member of staff in Wilko, no I wouldn’t rather take my child who is in the middle of a meltdown outside and come back in a minute. I think that’s what you would rather me do and I am disgusted with your attitude.

To the man trying to get me to change my cable provider, I am already with Virgin, I already think your service is sh*t and can you not see I’m trying to comfort a screaming, scared and upset child?

To the people just staring at me, whispering to each other and the blatant judging of my parenting, I hope your children don’t have bad days like this.

And to the old lady in Sainsburys who told me Skye was too old to be in a buggy and she should be walking, thank you for your input. Skye has hypermobility syndrome. Walking long distances for her is painful. So she goes in a buggy when she is too tired to save her little legs from hurting.

Today was hard. Never felt so judged by so many people. The noise of builders, cars, the beeping to cross the road and music in the shop was all too much for Skye. So she dealt with it the only way she knows how. To cover her ears, shake and cry. She was scared. She was upset. And she was panicking. She was NOT being naughty.

And despite this, I love taking my little beauty shopping. I will not apologize if she is an inconvenience to your shopping trip!

Dear passers by, This is Skye. She’s 3 years old. She has autism spectrum disorder, pica and hypermobility syndrome.To… Posted by Sammi Ovington on Monday, February 29, 2016

I can’t believe the amazing response the post has had,” Ovington told the Daily Mail. “I just wrote it when I was angry and didn’t expect anyone to respond, now for people to say that it’s a great way to raise awareness is just fantastic.”

http://www.dailymail.co.uk/news/article-3474487/Mother-hits-store-staff-told-autistic-daughter-outside-having-two-hour-m… Posted by Clear Skye’s on Thursday, March 3, 2016

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