“My spouse and I don’t have the time to spend with one another because our world is consumed with autism.”

“Honestly, my marriage would thrive with more respite options, but we simply don’t have the luxury to invest in one another because who will care for our son?”

Third in our series on the impact of severe autism on marriage.

By Jessica Ingle

My son Zeke is 6 years old. He was diagnosed with severe autism at age 3, and he is nonverbal. There have been six nights in my son’s life where my spouse and I have been able to get away with one another. Two of the three occasions were in the same town we live in - so no, not some tropical paradise we were running away to! We were desperate and delirious from a lack of sleep because Zeke doesn’t sleep — never really has. Even as an infant, he would cry for hours, and most days, so would I.

My wife and I would take turns with him throughout the long nights so that we could attempt to sleep if the screaming wasn’t too loud. We were desperate for a full night of rest together so we begged our parents to keep Zeke so that we could get a hotel room close by. Yep, that was the goal of our getaway — sleep. 

Our ten-year wedding anniversary was recently approaching, and we planned to celebrate by vacationing in the Bahamas for four nights. Not for weeks or even a week - simply 4 nights was all we allotted for ourselves. As our departure date inched closer, I teetered between being ecstatic and terrified. I was nervous to leave Zeke, but I had his schedule and routine written down minute-by-minute for his grandmother. 

Zeke’s schedule is extremely busy and has many moving parts. There are therapies, school, our work, his evening meltdowns due over-stimulation and hopefully sleep. Every day is different but a constant merry-go-round. Zeke wakes up and sometimes eats breakfast and then we figure out what clothes will be tolerated for the day before brushing his teeth. This can take up to 20 minutes because he often refuses. There is never a morning to just lay around and be lazy together due to work, school, and therapy obligations, but the evenings are the hardest. There has to be a set of eyes on him at all times because he is an eloper or will jump off the back of the couch and hurt himself or accidentally break a picture frame and cut himself. Most often, one of us cooks dinner while the other entertains Zeke and then we switch roles for clean up. Bath time is a two-person job as he doesn’t enjoy them most nights. Once all of this is finished, we give him medicine to help calm his brain and induce sleep. He usually goes to sleep by 9:00 pm, and if we’re super lucky, he will sleep until 6:00 am, but most nights it’s closer to 4:00 am when he wakes up and then our day starts all over again. 

But 36 hours before we were scheduled to leave for our anniversary trip, we landed in the emergency room. Zeke was constipated and projectile vomiting. My spouse ran home to gather supplies for a hospital stay while I settled him into our room. I canceled our tropical vacation the next day. Thankfully, we were given a credit and can reschedule.  We’re hopeful that we can go next year on our anniversary. Fingers crossed. 

Zeke was in the hospital for 6 days to clear the impaction which meant we stayed the entire length of our anniversary trip. While there’s nowhere else I would rather be when he’s sick, it stings a little bit as well. My marriage is so often put on the back burner because of our son’s needs and my spouse and I don’t have the time to spend with one another because our world is consumed with autism. Date nights are nonexistent, but every few months we try to spend a few hours together alone; however, the work required to schedule all the moving parts is exhausting, and the fallout from the change of routine can last for days. 

Honestly, my marriage would thrive with more respite options, but we simply don’t have the luxury to invest in one another because who will care for our son? While we’re thankful our parents have kept Zeke in the past, it is becoming harder for them as they age, and Zeke is getting bigger. As he ages, our options for respite decrease, and that makes it even more difficult to cultivate our relationship because when he is around, no one is resting. No one is having a quiet conversation and there are no romantic dinners for two. We aren’t able to hire the teenager from down the road because it’s too dangerous and most people are not equipped to care for a child with severe autism.  

If my spouse and I were able to have two hours alone every week and didn’t have to worry about the care Zeke was receiving, we would be unstoppable. My family would flourish!  My spouse is my best friend and a wonderful parent to our little boy, but it would be so nice to have time to be together — alone. Time to invest in our marriage and time to invest in one another. Is that too much to ask? 

About: My name is Jessica. My spouse and I have been married for ten years. We have one little boy, Zeke, who is 6 years old. Zeke was diagnosed with severe nonverbal autism at age two after he regressed and lost all language and social skills. Our home base is North Georgia. However, we are traveling full time in our RV this year. I have my own blog at https://www.facebook.com/Zandme2/. I have also been featured with Finding Coopers Voice, Love what Matters and Her View From Home.

I Never Imagined Marriage Looking Like This

What happens when a husband and wife have very little left for one another?

AG and her family

Second in a series on marriage 

By AG

My husband and I make a good team. Where I am weak, he is strong and where he is weak I am strong. 

We met and fell in love in September 1999 and have been crazy about each other ever since. We wanted children, and I got pregnant 10 months after we were married. We were so excited to begin our journey as parents but then at age two our son was diagnosed with autism. I threw myself into research, new therapies, diets, conferences, and anything I could get my hands on to get my baby back from the dark hole he seemed to have fallen into.  

He also acquired an autoimmune disease at about 7 1/2 years old, and it took us 7 years to get a diagnosis. Our help and treatment was scattered, and we went out of state to find answers. Shortly thereafter, we discovered our second son suffered severe brain damage in the womb. We knew from the beginning that his diagnosis would be lifelong, but we jumped in with both feet. That seems to be what we do. We give all that we have to our boys and then what's left to each other, which isn’t much.  

This way of operating through our marriage is beautiful and bitter — beautiful in that we have truly learned what it means to sacrifice for another person’s wellbeing. To be in love with someone and see your life together passing by so quickly without being able to enjoy what you have with this person you vowed to love, honor and cherish, that’s bitter.  

Or enjoying a rare moment together, which is often rushed and frequently interrupted with questions, phone calls from nurses, therapists, teachers, medical supply companies, doctors, business, or medical crisis. My husband and I long to spend more time together and drift away for a few days, but the care is limited for our boys. There are only a couple of people who are able to help and only for a short amount of time (hours at best), and care for our two boys is expensive. Finally, there's no line of autonomy or privacy when you have two bathrooms and one is used as wheelchair accessible and the other for our 20 yr old autistic son.  

Neither of us is ever functioning at our best. We deal with immune issues from chronic stress, degenerative bone disease, and regular joint pain. We sit outside as much as possible for a quick cup of coffee or sneak away for a couple of hours if the therapist has our oldest and a nurse has our youngest, but it's hard when neither of us has time to process our trauma because we just go from one duty to the next. I've seen evidence of PTSD in both of us. Sometimes when I touch my husband while he's sleeping or try to wake him gently, he jumps out of his skin. We also both deal with depression and wonder when we will be able to do anything either of us dreamed about.  

There are also things we argue about that would not be present without special needs children. A stupid argument might arise when one of us is trying to handle a meltdown and then the other’s anxiety starts to flare. I snap at my husband and feel the need to protect my child even though my child is attacking me. My trauma and fear of losing either of my children has caused me to micromanage at times, which makes my husband feel helpless. He goes inward sometimes and shuts down or gets lost in distraction to numb all that is going on. I don't blame him because it is a lot to handle.  

One child is battling breathing, needs cathing and full medical care and the other is dealing with severe behaviors, epilepsy and needs to be active or he gets agitated. We have two very different levels of ability that we are always juggling. My husband simply turns off those moments when he's processing the loss of our children's abilities whereas I process externally and that weighs on him as well.  

“I am thankful for my family, but I didn’t think it would turn out this way. We long for normalcy. We long deeply for mental, emotional and physical rest. We long for peace, hope and joy.”

I have questioned my faith many times over the years. I've had a lot of "why" questions and doubted the goodness of God. God always brings me back around and restores me. My husband does better in this area and goes with the flow, especially with God. I'm a fighter, a questioner and a doer. We've fought through a lot and grown together a lot. Sometimes, we have nothing left to give to one another because we've given it to everyone else, and we are simply trying to keep our heads above water, but in other ways it has drawn us so close together.

I am thankful for my family, but I didn't think it would turn out this way. We long for normalcy. We long deeply for mental, emotional and physical rest. We long for peace, hope and joy. We are always looking for these but they are hard to find when autism and medical fragility are present. 

About AG: I'm a wife, mother, activist, lover of all things authentic and as transparent as they come. I love Jesus and my faith is as bumpy as my life. I’m also a wife to an amazing man with a big heart, creative abilities and a love for God. We have two children. Our oldest son is almost 21. He has autism, epilepsy and a rare autoimmune condition. Our youngest son has Cerebral Palsy, epilepsy and a spinal cord injury. I have found who I am designed to be when I love my boys. As challenging as it is, it has transformed me into someone I never knew I could be.

Letter to a Forever Dad

In honor of Father’s Day

“‘… in sickness and health, even if our kids are born with special needs or autism and have behavioral issues that we can’t even begin to comprehend, and we need to care for them for the rest of our lives,’
even then — I will love them and I will love you because that is what you’ve done for us.” 

Dear Husband, 

It’s hard to believe it’s been 14 years since we were married. Crazy how a chaotic life can make time pass so quickly.

In those 14 years, we have had our share of joys with new jobs, a new home and the birth of babies. We’ve also had our share of sorrow with the loss of little ones, jobs, and illnesses, but perhaps the greatest challenge we’ve endured has been with our two boys who have autism. 

When I gave birth to our firstborn, you had dreams of him following in your footsteps, participating in Boy Scouts and helping with house projects, but those dreams were replaced with therapy and doctor’s appointments, and you set aside the hurt and loved them even more.

As our boys have aged, now 12 and 11, I’ve seen the strain their extensive needs put on you: the sleepless nights, waking up early, and their inability to regulate at times. 

I see you try to give them all the love you can, even when your own tank is running on empty. I see after a long day at work how you just want to relax, and our boys won’t let you; instead asking question after question, oblivious to the social cues you are giving them that you are desperate for some relaxation. And as you sigh, you give them the attention they long for and answer their questions, again and again, and again. 

I see you show me love even though your tank is empty. I see it in the early mornings when you allow me to sleep in after a rough night and make supper every once in a while — all in spite of another challenging day at work or with our boys.

Two tanks running on fumes for years has undoubtedly resulted in conflict in our marriage. Conflict over how best to help our boys and manage daily behaviors. Conflict over how to find some peace in this chaotic life we live. Conflict because we seem to be more in survival mode most of the time than in a loving relationship. 

I miss you husband. 

I miss our dates, the one opportunity we had for respite from caring for our sons but then the pandemic hit and our caregiver moved away and our dates became few and far between. 

I miss doing things together, as a couple and as a family. More often than not our life is divide-and-conquer, and it’s hard that people have stopped asking where you or I am anymore when we aren’t together. Now, they just know.

Despite all of these challenges, you are a good man, a good father, and a good husband.  

Thank you for loving all of us, even when it wasn’t easy. 

As I contemplate our wedding day and think about our vows, both of us full of ignorant bliss, knowing what I know now I would add, “…in sickness and health, even if our kids are born with special needs or autism and have behavioral issues that we can’t even begin to comprehend, and we need to care for them for the rest of our lives,” even then — I will love them and I will love you because that is what you’ve done for us. 

Happy Anniversary Mr. C, the Forever Daddy


About: My name is Robyn, and I live in Minnesota with my husband Mr C and our six kids. Our oldest two boys both are on the Autism Spectrum. My hobbies include blogging, staying up late and drinking coffee. 

Autism advocacy is my passion.

Blog link: https://m.facebook.com/StixAndFuzzies/

Yes, Autism Is a Problem that Must Be Solved

Recognizing there is a problem is the first step in seeking a solution. Until this first crucial hurdle is crossed there will be no progress.

(Stock image)

By John Eckhard

It seems absurd to those of us who deal with severe autism every waking moment, and too often in our dreams as well, that there still exists in society a prevalent belief that autism is not a problem to be solved. Recognizing there is a problem is the first step in seeking a solution, for until this first crucial hurdle is crossed there will be no progress.

There is a romanticized view of autism that at times even goes so far as to say autism is an evolutionary step in our species. Instead of being viewed as a disorder to be researched and one day prevented, treated or even cured, it is too often heralded as a coveted gift that needs to be celebrated and embraced.

I am sure that most of this is attributed to the spectrum of autism being so vast that it has lost all meaning. Distinctions or nuances within this vast spectrum are frowned upon for there seems to be a desire that all autistic people fall lock step into a mantra of ‘All for one, one for all’. Again this may sound like a noble, lofty and selfless ideal but it leaves people like my son who is severely autistic without a voice and without the resources he and so many others need to simply make it through a day. A one-size-fits-all approach to autism is not only impractical, it is outright dangerous and cruel.

“A one-size-fits-all approach to autism is not only impractical, it is outright dangerous and cruel.”

Self-identity and autism seem to be intrinsically linked in the minds of some people. I have heard it said that if my son was no longer autistic he would no longer be who he is. When he was first diagnosed at the age of two this line of reasoning was very compelling for I did not want to change my precious little boy. He is now 11 and watching him struggle and suffer over this past decade I now believe with all my heart that it is precisely autism that is preventing him from being who he really is. Without the straitjacket of autism he would become his authentic self.

I believe that all people desire and want to be free. To the extent that we are prevented from being free we are prisoners to whatever is holding us captive. If you believe in God it is sin who makes us captive. In a corrupt government it is the brutal regime that makes us captive. In an intolerant society it is bigotry and hatred that makes us captive. And for my son it is severe autism that makes him a captive. 

“I have heard it said that if my son was no longer autistic he would no longer be who he is… I now believe with all my heart that it is precisely autism that is preventing him from being who he really is. Without the straitjacket of autism he would become his authentic self.”

He is powerless in so many ways to break free from the autism that holds him in its tight grip. Autism has robbed him of his ability to speak, to have autonomy over his own bodily actions, to enter into meaningful relationships, to live an independent life without 24/7 support, and to top it all off autism will even steal away so many years of his life.

This to me is not a romantic “diversity,” but rather a dismal reality that so many people live, and it is hidden for it does not fit the narrative. My son, and millions of others like him, only have one life to live and as a civilized and humane society we should be doing everything in our power to help them.

Every waking moment my son struggles to live in a world which he does not understand and is so often dangerous to him, and yet he tries with all his might. It took him months before he could navigate from the concrete patio to the grass for the transition and textural change was overwhelming to him. 

He does not know how to do something as simple as throwing up. He wants to immediately swallow his own vomit because he is scared and disoriented. My wife and I will hold his head forward and try to coax him just to let it out wherever it may land — the floor, the couch or even on us. My wife and I do everything we can to be his guides and protectors, but we need more — we need society to wake up to the nightmarish reality of the autism tsunami and respond with the urgency my son and all of us desperately need.

John Eckhard is the father of an 11 year-old son with severe autism.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

Reduction of Severe Behaviors in Autism— Slides from Special Interest Group at INSAR 2022

Here are the slides (in PDF) from the Special Interest Group on Severe Behaviors in Autism, held at the International Society for Autism Research on May 13, 2022, in Austin, Texas. They contain contributions from many of our presenters including Dr Lee Wachtel, Dr Imtiaz Mubbashar, Dr Matt Siegel, Dr Deborah Bilder, and others. There are 69 slides in the deck. We regret an audio recording is not available (per INSAR policy) but we will post more information about follow-up efforts from this SIG.

Some highlights from the slide deck:

From Dr. Lee Wachtel

From Dr. Lee Wachtel

From Dr. Lee Wachtel

From Dr. Matt Siegel

From Dr. Deborah Bilder

From Dr. Imtiaz Mubbashar

From Dr. Audrey Thurm, Dr. Alycia Halladay


The Most Magical Place on Earth? With Autism, Maybe Not so Much

Anxiety and aggression got the best of a boy of a 12 year-old obsessed with Star Wars. But the family would do it again—with some key modifications.

With summer around the corner, NCSA is featuring a series about traveling—or not—with severe autism. This is part 3.

By Fred Marvel

When Disney World opened Star Wars Galaxy Edge on August 29, 2019, my son Aleksander immediately began planning his trip to Florida. Aleks is a huge Star Wars fan, and he also has Level 2 Autism, ADHD, anxiety and Sensory Processing Disorder. We understood the combination of a Disney vacation along with these diagnoses could be intense — for him and for us. 

After begging to go for years, Aleks finally got his wish when we flew to the sunshine state for a five day vacation this past January, and he couldn’t have been more excited. 

Amusement parks make sense to Aleks because there are rides with lines and shows with scheduled times. This environment makes more sense to him than a trip to the beach where he must figure out how to occupy his time; however, theme parks are also very hard on Aleks due to the crowds, waiting, noise, and smells. Because of this, the experience often becomes physically exhausting for everyone involved. 

To prepare for our vacation, we picked our resort based on its transportation options and proximity to the parks, and we watched YouTube videos so that Aleks could familiarize himself with the rides. Disney also offers a disability pass which helped minimize the amount of time we had to wait in lines — always a good perk with someone who doesn’t have much patience. Before we departed, we were confident we had covered all of our bases. Unfortunately, we did not take into account Aleks’ increased anxiety which began on the flight.  

My wife and I were flying for the first time with our three boys: Aleks, 12, and his brothers 8 and 4. Our four year-old requested to use the bathroom when we arrived at the terminal. While my wife helped him, we heard a call that our flight was starting to board. That simple message sent Aleks into a panic. We had plenty of time, but he was convinced we would be late and miss our flight.  When Aleks goes into panic mode,  he will use some colorful language, and this is often our first clue that he is dysregulated and needs a break. Thankfully, we made it with plenty of time to spare, and the vibrations and movements of the flight actually helped calm him down. 

The flight itself was uneventful and everything went according to plan until we arrived at the Magic Kingdom, and Alek’s anxiety skyrocketed. This anxiety combined with his sensory issues translated into a very difficult time for him. Even minimal waits for rides became a massive problem or any complaining from his younger brothers immediately got on his nerves. 

The first day convened with relatively few issues considering Aleks’ anxiety, but the second day was a different story. Hollywood Studios was very crowded, and Aleks became increasingly excited because his dream was coming true. He was finally going to Galaxy’s Edge! As we waited in line, our 8 year-old son began whining. This whining, along with the crowds, the excitement, and the anticipation sent Aleks over the edge, and he hit his brother. Aleks has made great strides over the years, and his aggression has greatly decreased, but he will still become aggressive when he is dysregulated.  

On our third day at the most Magical Place on Earth, it was my turn to be the target of Aleks’ aggression. We were in line for the Pirates of the Caribbean ride when I caught a right hand to the face, but our last day was the worst of all.  We were enjoying lunch at Hollywood Studios, and I could tell Aleks was having a hard time. He and I decided to take a walk and leave the crowded restaurant. We walked into a gift shop, and Aleks saw something he wanted to buy but he had already spent his money. I told him no, and when we walked away, he hit me multiple times. 

In hindsight, I believe Aleks’ diagnoses worked against him — especially his obsessive nature. He had watched numerous videos and had done so much research that he knew his way around Disney World before we even got there. His anticipation for this vacation was uncontrollable, and this anticipation led to exhaustion. When Aleks is tired, it is harder for him to deal with the sensory input that comes with spending a few days at a theme park. To top it off, his anxiety became crippling. Would we be late for anything?  How long are the lines? Would he be embarrassed if his brothers acted out? 

In the end, Aleks and his brothers said they had a wonderful time, but it was a sacrifice due to the amount of stress we dealt with. In hindsight, we would take another trip to Disney World or somewhere similar. Like most families, we learned, and next time we won’t cram so much into one trip. We’ll take more quiet breaks to relax around our hotel, and familiarity is a key to success with Aleks.  Next time, he’ll know what to expect. It goes back to our philosophy as parents — we are going to keep trying and learn from our mistakes.

Fred Marvel is a paralegal and podcaster who lives in the suburbs of Philadelphia with his wife of almost 16 years and three sons. His podcast, The Spectrum Dad, features interviews with members of the autism community and his own stories as an autism parent. You can connect with Fred on Instagram @thespectrumdadpod.