When My Autism Kept Me From Communicating Pain From Interstitial Cystitis

It was the beginning of August, I was enjoying the summer fun — until my stomach hurt to the point I was crying, whining, upset, agitated and melting down. I was hurting, but I didn’t have all of the words to describe it to people. I just knew that it hurt and that it was somewhere in my stomach area. I knew it hurt. I knew I was frustrated. I knew I wanted to feel better. But I didn’t know what hurt or why.

I often have a hard time describing, expressing and communicating pain, even though I am verbal, this is due to my autism. Pain is such an abstract concept. We often hear the phrase, “Behavior is communication.” This phrase is so important. Please, please consider medical or health issues being a possibility when seeing an individual experience behavior that seems unusual for them, out of sorts, or increases for no apparent reason.

I am so very grateful for my parents, family, therapists and friends being there for me and helping me cope and advocating with me. Thank you to every single one of them for all they did and continue to do. Support is important, and parents and caregivers need and deserve support just like the individual does.

woman in glasses smiling at the camera

Please trust your gut. Continue advocating to find an answer. Help the individual to be comfortable and know that you understand they hurt and are trying to figure it out. Seeing numerous doctors and working really hard to communicate and find a way to explain the hurt to others in a way that is understandable is not an easy feat — at least it wasn’t for me. I got frustrated when answers didn’t come after each doctor’s appointment and the pain was still there.

We found out what it was not, time and time again. I became pretty experienced and good at doctor’s appointments, tests, etc. But I still didn’t have an answer.

Then we finally found an answer. I was diagnosed with interstitial cystitis (IC). My bladder was hurting; the bladder and pelvic area is very close to my stomach. IC cannot be detected in the urine, hence why urine samples and various tests did not show answers. Hence why I said, “Hurt” and pointed to my stomach area. It was assumed it was gastrointestinal at first because everything else was normal. Then at a routinely scheduled appointment, a specialist asked if we’d heard of IC. We hadn’t. That was the first time we really began to think about it being bladder pain. In the end it makes sense, with the bladder so close to the stomach area. In my concrete mind, it was my stomach, and it just hurt. But detective work discovered it was more.

Please, please, please — listen to behaviors, listen to the words of others, listen to your gut feeling. Advocate for what you think and what you think is best for the individual. Remember even on the hard days, the individual needs you. You can be one of their biggest advocates. Believe the pain is real even if you can’t see it. Be patient, be understanding, be supportive. Most importantly just be there. Be willing to think out of the box. The adventure and journey may not always be easy, but I definitely learn and make progress.
Accept that sometimes behavior is simply the best and very possibly only form of communication we may have amidst all the hurt and frustration. Accept that individuals with autism are different, not less. Be aware how much one can learn by doing, living and experiencing. I ask that you do this not just in April, but year-round.

Remember, I may have autism and I have IC, but these struggles don’t totally define me or who I am. They are just a part of me. Step back and see all the many characteristics one has to offer.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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.


Seeing My Husband in a New Light After We Became Special Needs Parents

Routine can make a person blind to incredible beauty. It’s something that can happen slowly, over time. You can drive the same route to work day after day, but it isn’t until you are in the passenger seat that you notice the old farmhouse hidden just behind the trees. There, stopped at the very same traffic light for which you normally have very little patience, you are able to take in the true beauty of that old property — the way it sits on the small pond, the character of the tin roof. Being a passenger can afford you the chance to truly take in the vibrance and sights that are otherwise muted by your focus on the destination instead of the journey.

Raising young children with your spouse can have a similar effect. It’s not that you forget that he is wonderful. You’re married to him, after all, and part of marriage is choosing that person again, day after day. But the days become months, and then years. Your children grow, and you settle into a routine. Though it is far more rewarding than your morning commute, it is a routine nonetheless. Together, you master the basics of the parenting thing. Without even realizing it, each of you take on different roles. They become second nature, and you find yourself going through the motions of getting ready for the day, not without care, but more like a well-oiled machine. It just flows.

Until something rocks your world.

For David and I, this was Piper’s autism diagnosis. Piper is our 3-year-old firecracker. Born in July and the youngest of our three children, she entered the world full of spunk and joy. Somewhere between the ages of 2 and 3, her bright, contagious laughter dimmed. The words and giggles stopped coming, and tantrums and isolation took their place. Great concern led us to her pediatrician this past August, and that day set off a chain of events that threw our routine out the window.

For a while, it was terrifying. I felt that while the rest of the world carried on, time for us had come to a screeching halt. I was scared for Piper, and what her future might hold. I was worried about Kaydence and Cameron. I was worried about how this would affect David, and how he might internalize his feelings in such a situation. I was even more worried about the impact our new reality would have on our marriage.

There were some dark days, for sure. Watching your child struggle will inevitably cause a strain on any relationship. Sheer exhaustion broke us down at times and exposed our children to a more stressful environment than we’d have liked. Then, things started to come around. With an incredible support system and remarkable therapists and teachers, Piper started communicating. It was a thing of great beauty to see her light shine back through as the frustration left her body and mind. We certainly put in some hard labor, but the well-oiled machine got a much-needed upgrade to meet the new demands of our routine. With a few hiccups here and there, we worked together and caught onto this parenting thing again.

What happened next was nothing short of incredible. I deliberately took a step back and became the “passenger” again. I forced myself to actually observe our new routine instead of focusing on where we needed to be next. In doing so, I was given one of the greatest gifts in a decade of marriage; I am now able to see my husband in an entirely different light.

father and daughter holding hands standing on the beach looking at the waves
Angela’s husband, David, and daughter, Kaydence.

I see a man who has committed every fiber of his being to keeping our family together. It suddenly occurred to me that my heart wasn’t the only one that ached over the past few months. His did, too. Despite that, he has carried on with the calm, steady manner that I always recognized, but never realized was so vital to our relationship. On Piper’s toughest days, I still tend to break down. It is David who reassures me, allows me a reprieve, and steps up to the challenge without fail. It has always been David who gets the children off to school each morning, yet until I sat in that passenger seat and observed his routine, I never considered that he’s used this time all along to learn each of the children inside and out. I see now that this has provided Kaydence and Cameron with the consistency and nurturing they’ve needed.

While I’ve never known David to be anything but a loving father, I now see how learning to be a father to a child with a special need has made him stronger. I’ve thanked so many people along this journey for their support, but the greatest of thanks is truly owed to my husband, a man who never for a second let us lose our way.

Follow this journey on drivingthestrugglebus.

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.

SPARK, the Largest-Ever Autism Research Study in the U.S. Launches

The U.S.’ largest-ever autism research study launched Thursday.

The Simons Foundation Autism Research Initiative (SFARI) is recruiting 50,000 individuals with autism of all ages and their families to compile genetic, behavioral and environmental information about individuals with autism. The organization partnered with 21 clinical sites across the country, including The University of Washington and the Seattle Children’s Autism Center (SCAC), which have already enrolled 300 Seattle-area families during the pilot stage of the study, called “SPARK,” the Seattle Times reported.

“We really want to involve as many families as possible where the child has been diagnosed with autism,” Raphael Bernier, a UW associate professor of psychiatry and behavioral sciences, told the Times. “We want to get every child involved.”

SPARK stands for Simons Foundation Powering Autism Research for Knowledge. Its mission, according to its website, is to “speed up research and advance our understanding of autism to help improve lives.” Information from the study will help identify genetic and non-genetic factors that contribute to autism spectrum disorder. According to the CDC, an estimated 1 in 68 children are on the autism spectrum.

If they consent, participants in the study share a DNA sample —  a saliva collection kit is sent to their home and then mailed to a lab for analysis. Samples can be provided by spitting in a tube or swabbing the cheeks or gums. Because this may be painful or uncomfortable for someone with autism, SPARK released a video to help demonstrate.

“While considerable advances have occurred in autism research, there is still much we don’t know,” SPARK’s website reads. “For example, recent research has shown that likely hundreds of genes play a role in autism, but not a lot is known about which environmental factors contribute to the development of the condition.”

If you are interested in participating or would like more information, head here.

My Answer to the Question 'What Does Autism Feel Like?'

One of the questions I’m most often asked by parents of people living with autism (and one of the questions I’m honestly most afraid to answer) is “What does autism feel like?”

My fear comes from two places.

a woman in a vest and white shirt looking up at the camera

The first is that I never want anyone to take my personal experience of living life on the spectrum as being the universal experience of living life on the spectrum. My story is just that — my story, and while there can always be common denominators in the autistic experience, there is also much diversity. That’s why they call it a spectrum.

Dr. Stephen Shore once said, “If you’ve met one person with autism, you’ve met one person with autism.”

The specific ways that autism feels and manifests in me may be very different from the specific ways in which it feels and manifests in someone else. So, I’m sometimes afraid to say how it feels because I don’t ever want to be set up as the “autistic standard.”

The second source of my fear is that there have been some folks who’ve just not been very nice when they’ve learned what life’s actually like for me. I’ve been called “crazy” and “cuckoo” and “a couple of fries short of a Happy Meal.” I’ve been labeled a lunatic and laughed at by those who really should know better. I’ve had people talk terribly about me behind my back — not knowing their words would eventually make their way to my face… and more painfully, to the center of my heart.

Their cruelty has made me cautious, and there have been times when I’ve considered catapulting myself away from this public perch as an autism spokesperson.

Every time I prepare to turn tail and run, I inevitably receive an email from a mom who’s hurting and confused and trying desperately to find one tiny hook to hang her hope on as she battles what is tormenting her child. She asks me to help her understand even an ounce of what her little one might be feeling, and I realize that I can’t allow mean comments or the face of my own fear to silence this story.

So, today I go to that place where I’ve often feared to publicly tread.

What does autism feel like in me? Well, autism often feels awful.

Before I give you some specific examples from my own existence, let me make sure that you understand what autism spectrum disorder (ASD) actually is.

Autism is a neurodevelopmental disorder that is often characterized by varying degrees of struggle with social interaction, verbal and nonverbal communication, sensory processing, and restricted or repetitive behaviors. I’m going to break some of that down for you — at least as some of these things manifest in me — but I want you to recognize that all of the “psychological” manifestations that you see in a person with ASD actually flow out of the underlying neurological system of ASD.

The behavioral chicken hatches out of the physiological egg.

That’s important to understand, because when people with autism seem to be “behaving badly,” it’s often because we’re hurting badly.

The Frayed Wire

I often explain the neurological framework of autism (the framework from which autistic behavior flows) by likening the physiological pathways of the autistic body to that of a frayed stereo speaker wire.

Everyone with autism has some form of sensory struggle. Sight, sound, smell, taste and touch (the five senses that all of the experiences of life must pass through) can be absolutely harrowing and horrifying to a person with autism. Everything that enters the ASD body is often accompanied by some semblance of pain or at least by some extremely uncomfortable sensation. Here’s where the analogy of the frayed wire may help you understand autism a bit better.

When you go to your stereo and turn on the tunes and all is working well with the speaker wire, then the sound is sweet, crisp and clear. You hear what the artist and producer intended for you to hear — and it’s a good and pleasant thing.

However, if your speaker wire has a short in it, if it’s frazzled by a fray, then things might not go so well, and a clear connection could be lost.

There are moments when that frayed wire may be in the perfectly placed position to still allow really solid sound to pass through. In that moment, the music is coming through loud and clear and you get to enjoy the groove.

But then something shifts — even just a little, and suddenly that worn wire produces static (and maybe even sparks). The music’s still there, but with it is another competing noise — a sharp and crepitating noise — a noise that’s taken something pleasant and made it painful.

All of a sudden something shifts again, and everything has gone from simple static to overwhelming and excruciating white noise. In the chaotic cacophony you find yourself reaching for the volume control in order to mute the mess because it hurts.

Then things shift once more and the frayed wire is now in a position where nothing’s getting through. The connection has been lost and all is silent. The stereo itself is still making a melody, but that melody is trapped inside the machine and unknown to anyone on the outside.

Welcome to autism!

Our neurological wiring — the “speaker cable” through which the five senses travel within us — is “frayed.”

At one point we’re positioned so that the things of life are coming through clearly and we may almost seem OK and maybe even “normal” — our melody might momentarily sound marvelous.

Then the wire wiggles and begins to produce some static — and we become confused and stressed because we’re trying to hear the “tune” of our surroundings over and against the torture of the snap, crackle and pop of the crimped cord.

Suddenly the wire is all static and we’re utterly undone — because the racket is just too much to bear and we’re suffering from the neurological distress.

And then there are those times when the connection gets completely cut and we find ourselves disconnected from the music and meaning of life. The tune is still in our head — we just can’t get it out for you to hear.

The “frayed wire” that is autism is not a pretty place and is often a painful place.

I’d encourage you to remember this analogy when you see a person with autism struggling with a shutdown, or a meltdown, or an absolute disconnect to his or her environment. The neurological wire’s not working well. We’re not “insane” — we’re in pain!  Please have some mercy in the midst of our malady, and show a little compassion to us (and to those with us) as we seek to navigate the nightmare.

My Own Experience With Autistic Angst

The personal pieces of how autism’s “frayed wire” fleshes out in my daily existence, well, those are varied and would take a lot of time to walk you completely through — but I’ll give you a glimpse and will trust that you’ll love me and not laugh at me as I un-bear my burden.

My hope is that this will help you understand a bit more about life with autism, and that as your understanding increases so will your heart for those who are hurting — no matter how they hurt.

Where the sensory is concerned, much of my life has been lived without filters attached.  For many people, the brain naturally sifts and separates visual, auditory, olfactory and tactile information. Your brain is able to decipher and discern what’s important to focus on and set aside that which is less relevant at the moment.

In my experience with autism, everything flows through with equal force. Life is like a continual sensory storm. A raging flash flood of sensorial data is always pulsing through the marrow of my bones. It’s a never-ending, devastating deluge of chaotic kinesthesia. There’s no sensory spillway; a dam’s not even dug to help control all that’s pouring into me. Everything hits me full on, and I’ve had to learn to sink or swim against the surging onslaught of my five senses.

Where sound is concerned, the voices and vibrations of this world are always pounding upon me. Life is loud! This can make carrying on a conversation in a room full of people a true challenge — because I hear everything at equal volume. My auditory abilities are often extreme. In that room, I hear your hair. Yes, you read that right. In a room full of people I literally can hear when someone’s hair moves in the wind or when they brush their fingers through it. In that room as you and I are trying to talk, I am hearing everyone else’s conversations as clearly as our own (along with their hair!) — and that’s a confusing thing, because which words am I supposed to be interacting with as we chat? Take that scenario and apply it to the classroom, the park, the church, or Walmart. It can be absolutely overwhelming!

As a young child I was barely able to eat in front of others (many assumed I had an eating disorder) because of the pain I felt when someone’s fork touched their teeth. In a restaurant, I was always undone because not only did I hear multiple food implements on everyone’s incisors, but also all of the kitchen noise, and chewing, and swallowing, and breathing, and the transfer of change at the cash register, and the hum of the fluorescent lights, and everyone’s clothes making contact with their chair (oh yes, and their hair!) — on and on and on it goes.

The amount of auditory information that my brain was processing was overwhelming and it usually resulted in a panic attack — even at the age of 8. Everything that I heard hurt — it still does. By grace, though the years I’ve been able to develop some coping skills that now allow me to handle this a bit better — or sneak away when I know I can’t.

My visual experience is also rather radical. Bright light can be painful — honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense — and that sometimes makes it hard for me to focus on the central thing I’m supposed to see. I’ve found that wearing a ball cap helps me filter, by force, that which is crashing in by flood — it works in the same sense that “horse blinders” do at the race track.

One of the unique and challenging aspects of ASD for me is that my neurological wiring has an odd criss-crossing of visual and tactile. I feel what I see. When I look at a tree, I literally feel the bark. When I see a wall or a chair (or your hair), my body senses its surface. When I read a book, I feel the page. The same is true when I see your face, yes, I feel your face… which is one piece of the problem that some with ASD may have when looking others in the eyes.

Take a moment and look around.

Think about what it would be like to feel everything your eyes see. Welcome to my world!

My panoramic vision and the accompanying deep memory vault that can often be part of autism have an interesting correlation. I view life in pictures and my brain categorizes and catalogs all that I see.

Everything I look at goes into what I call the mental “file folders” of life. Things are subconsciously stored in my mind, in vivid detail, and under specific headings — I’m not able to always call things up on command, but I regularly experience a meticulous mental “finger-flipping” through the files of past experience when I enter a similar situation.

For example, when I walk through the door of my house, my mind flips through the pictures of every other time I’ve ever walked through the door of my house. It’s an involuntary visual occurrence that at times can be overwhelming. When I grab a shirt out of the closet, I relive where it came from — even down to the rack at the store where I found it and what other shirts hung near it, as well as all the other times I’ve worn it.

I may sit down for a haircut and in a matter of moments relive every other hair cut I’ve ever had (in great detail: the number of combs or brushes on every counter, the pattern of the tile, the position of the pictures, the people congregating for a coiffure). The same could be true when I go to a drive-in window, play a piece on the piano, or see you in the grocery store. Please realize this if I seem startled when I run into you somewhere — I may be reliving our entire relationship!

One tough aspect of that deep “file folder” memory, as it’s coupled with the disconnect of autism’s frayed neurological wire, is that sometimes it can be hard to moor myself to the current moment. There are times when I have to fight in order to determine which picture I’m seeing is the current picture. Which image is the here and now? Is this scene of life “live or is it Memorex?”

In light of this reality, I sometimes feel like I’ve never fully lived a moment of my life (the frayed wire), nor ever truly escaped one (the visual file folders). And that can be really hard at times.

Where touch is concerned, I often physically feel things from the inside out. When you touch my flesh, the first sensation that I have is from the center of my bones — and it can be rather fiery — anything from a dull burn to extreme electrocution. That feeling then flows backwards to my skin, at which point it’s usually not quite as painful.

Often when someone shakes my hand, or pats me on the back, or kisses me on the cheek, I will feel that sensation for at least an hour before it fully dissipates.

Clothing can hurt to wear.

Sheets can hurt to cover up with.

The most intimate forms of affection can be a great affliction.

There are times when the internal terrorism of the tactile makes me want to rip my bones from my body — which is one of the reasons you’ll often find those of us with autism engaging in some form of stimming (rocking, flapping, finger flicking) — it’s our attempt to counter all that is caustic.

Because I speak and sing for a living, people are often shocked to learn that I struggle with issues of communication — verbal and nonverbal.

My verbal abilities have been honed through years and years of hard work (my mom used to drill me on the practice of public speaking over summer break). In spite of the success I’ve had in overcoming my struggles, throughout my life there have been many seasons of selective mutism. Honestly, in certain settings there are still those moments of selective mutism, because I know the “wire” isn’t working well and that my attempts to talk aren’t going to end well. So I simply don’t talk. To me, silence has always been a virtue of self-survival.

When I do talk, I constantly coach myself in order to make my mind and my mouth correctly connect. Speaking is not an unconscious or habituated thing for me (really nothing is a habituated thing for me because I think through every action in great detail).

My talking to you is an exercise in extreme self-control and a labor in almost Nietzschean “will-to-power,” which can be exhausting — and which is one of the reasons I can only endure so much conversation before I have to bail. Sometimes I realize I can come across as a little bit rude — it’s because I’m worn out from words. That’s no excuse for sinful behavior, but perhaps it will help you understand my struggle with that behavior.

Because my mouth and my brain don’t always work well together, I have found it much easier to allow my thoughts to fly from my fingers than to leap from my lips. That part of my “wire” isn’t nearly as frayed and is definitely my preferred form of communication.

Where the nonverbal is concerned, there are so many stories.

As a young child, I spent hours in front of the mirror teaching myself how to really smile.  Even now, there’s a “director’s voice” in my head where I walk myself through which learned facial expression is the appropriate one for the moment. My vault of “file folders” is part of what now helps me read other’s expressions accurately — I automatically pull up other encounters with laughter and sadness and seriousness, and then apply that “photograph” to the current event.

I also trained myself to look people in the eyes at a young age. From my earliest days I can remember my neck shaking and my head drifting down when someone’s eyes would “touch” my own  (an eye “touch” is what it felt like, and it was incredibly uncomfortable — it was moist and squishy and made my skin crawl).

As an elementary-aged child, I forced myself to sit in class and stare the teacher down from a distance. When my neck would begin to shake and when my eyes started to drift, I would push all of the pressure of my neck muscles down through my body and into my toes — establishing a form of muscular “toe transference” that I still use to this day as a primary form of autistic coping.

I could talk to you about so many other things: strong seizure-like moments where my brain seems to shake in a violent fashion or petit mal periods that steal away sections of my day. I could discuss why at times I hit my head, why running is almost impossible for me, how monocular vision may possibly be playing a role in my inability to determine depth, and how hard I’ve had to work to learn to develop empathy for others — because emotional understanding, for me, has been an autistic anathema that only the mercies of Christ have helped me overcome.

What does autism feel like?

In me, it feels like all of this and more.

What words will ever adequately explain?

I know them not.

What I do know is that through every autistic “danger, toil and snare” through which I’ve already come, “’tis grace has brought me safe thus far, and grace will lead me home.”

In that grace, I find a sufficient salve for all of my autistic suffering. And as I’ve given the smallest glimpse into my own version of autistic angst, I truly pray that you have increased in even the smallest sense of autistic sympathy!

A version of this post originally appeared on A View From The Sycamore Tree. Follow this journey on Lori’s website.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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.

20 Things This Dad Wants You to Know for Autism Awareness Month

It’s Autism Awareness Month!

Social media is full of people lighting it up blue, posting multi-colored memes, having tattoos or taking part in fundraisers.

This is all great, I’m a big supporter. Awareness is a fantastic start, but this needs to be the first step. It’s easy to be aware of something without really understanding it, and understanding and acceptance has to be the bigger goal.

Back in 2009 I had no real idea of what autism was. I’d seen “Rain Man,” that was it. I’d never met anyone who was autistic, and I never expected it to play any part in my life. The year before, my first son Jude was born, and I was happily settling into fatherhood.

By the time Jude was 18 months old he had been diagnosed with autism. Three years later, my second son Tommy would also be diagnosed, again at 18 months old. Autism quickly became part of our everyday life. It became our normal.

To celebrate Autism Awareness Month, here are 20 things I’ve learned about autism over the last few years that I think are important. They’re all from my point of view as a parent of two children on the autism spectrum. They include what I have learned from them and what I have learned from others in the autism community on our journey.

1. Autism can affect how a person communicates with and relates to others. This might lead to them being seen as “anti-social,” which isn’t always the case. They may find it difficult to express what they need and how they feel, which can make life extremely challenging at times

2. Autism is a spectrum. While a lot of people with a diagnosis will share some common traits, autism will affect them in different ways. Everybody is different. This may make it more difficult to understand, but it’s important you do. Treat everyone with autism as you would anyone else, as individuals

3. You cannot tell a person has autism just by looking at them. Autism is what is sometimes called “invisible.” There is not a certain look. Telling someone “Oh you don’t look autistic” is not a compliment.

4. Autism can affect how a person is able to make sense of the world around them. This confusion can cause anxiety and behaviors you might feel are strange. Be patient. Try to understand.

5. Not everyone with autism has a “special” ability like Rain Man. Please don’t assume they do. When someone tells you their son has autism, don’t ask them “Ah, OK, are they really good at math?”

6. Nobody knows the cause of autism. Lot’s of people say they do. There are hundreds of theories out there, but nobody has a definitive answer. What causes autism is not the most important thing — how we accept and enhance the lives of people with autism is.

son with hat that says love

7. Hollywood and TV portrayals are not always true. What you see on TV or in films is what it is like for one person with autism. It is not always accurate (although recently I’ve found it to be much better), so try to realize everybody’s story is different.

8. Somebody having a meltdown is not the same as someone misbehaving. There is a difference. During a meltdown a person loses control of their feelings and actions. A meltdown can often lead to self-harming or self-injurious behaviors. Getting angry and frustrated with someone when they do this does not help; what they really need is compassion. Telling someone they should teach their child how to behave is probably the worst thing you can do.

9. Some people prefer to be talked of as “having autism.” Some prefer to be described as “autistic.” You should always defer to their choice of language. If in doubt call someone by their name — I’ve found this to always be the best!

10. Try to see the person for who they are. People with autism are individuals who should be treated accordingly.

11. If you’ve met one person with autism, you’ve met one person with autism. What might apply to that person you already know might be the complete opposite for somebody else.

12. Many people with autism have problems sleeping. Trust me, I know. Often it is due to a problem with the production of the sleep hormone melatonin. Bedtime routines that work for “neurotypical” children don’t always work. Sleep is so, so important for both the child and the parent; finding a way to make things better is crucial.

13. Stimming is OK. Stimming means “self-stimulation” and is used to describe behaviors that someone with autism may display at times, such as flapping, bouncing, rocking back and forth. Don’t try and force someone to stop their stims. They help to provide extra input or block out sensory input when the world is overwhelming. It can be soothing and allow a person to self-regulate and find their place in the world. It might not be behavior you think is “normal,” but it’s important for the person who is stimming. Embrace the stim.

14. Making friends can be difficult for someone who is autistic.  Different behaviors and interests can mean a child or adult with autism can easily be excluded. Be nice, be understanding. Try to teach your children to be the same. Making a friend can make such a difference.

15. Not all people with autism are able to speak. This doesn’t mean they don’t have a voice, and it certainly doesn’t mean their world is a quiet one. You should never assume incompetence due to a lack of words. They are able to listen and understand more than you know, so please talk to them too. Love needs no words. Finding a way to communicate with someone without using verbal language can be the most beautiful thing you’ll ever do.

16. Autism can mean at times the world is overwhelming to a person’s senses. Sights, sounds, touch, smells that you might feel are normal can all be too much. The processing of these senses can be very different for each person. This can trigger meltdowns when out in public places. Try and be aware, and rather than staring, see if you can help.

17. Not all therapies work for the same people. There are hundreds, if not thousands of different therapies out there for someone with autism. What works for one person, doesn’t always work for another. While a pet might calm and soothe one person, for another it might be petrifying. A gluten-free diet might work for someone, but not for somebody else. If it hasn’t sunk in yet I’ll say it again. Everybody is different.

18. Routine is often important for someone with autism. Knowing what’s coming next can relieve any anxiety they are feeling. However, the ability to be flexible is important too. Trying to find the right balance is the key.

19. Autism is nobody’s fault. It’s not due to bad parenting, something you did during pregnancy or something that happened after they were born. I would suggest to stop worrying about the cause, and focus on how you can help someone you love face with their challenges.

20. Everyone, autistic or not, wants love an acceptance.

Happy Autism Awareness Month! Now let’s work on greater acceptance and understanding.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

Struggling to Find My Role After Placing My Son With Autism in Residential Care

Evidently I’ve been seeing myself all wrong.

This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office.

There, a woman about 10 years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!”

I received this news better than you might expect. Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all.

“You know,” I continued, leaning forward confidentially, “besides using a cellphone, I still listen to rock and roll!” I cocked a sly brow. “And Eminem is, like, totally awesome!”

I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response.

That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me.

My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions.

His case manager Aaron has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers. We’ll gain freedom to enjoy more satisfying interactions and be part of our son’s life on a deeper, more meaningful level.

“Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.”


It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing. It seems to be Aaron’s gentle way of telling us to back off now and let them do their jobs, so our children can flourish in adulthood.

Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago. I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness.

Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home? Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him?

Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost?

As Daniel transitions into a new life and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not.

It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly “mine.” When his days began and ended with my voice, my touch, my assurances of a love that would last forever. I recognize that a part of me has been waiting seven years for him to come back home.

I want to assure Aaron that he needn’t worry, that I’m an old hand at this: I know all about letting go, the wrenching loss of doing what is best for my son. And I know, too, the freedom from the demands of caring for him. I know that freedom, and I know its cost.

It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance. It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own.

It is the recognition that in many ways my son feels like a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home. It is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child: Now you’re just somebody that I used to know.

Maybe Aaron sees me as a mother desperate for a time gone by. He wouldn’t be wholly wrong.

But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again. I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be. I am a mother who understands that love is not always enough, yet love remains more powerful than grief.

It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving. And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become.

But there’s letting go, and there’s letting go.

My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother. That woman will always be right there, behind him.

I can’t see myself any other way.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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.

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