Masking. No NOT that kind of mask, I think we are all tired of THAT kind of mask.
I’m talking about the masks we wore BEFORE there was a global pandemic. Example, the “I’m so happy to be here” mask that you put on just as you walk into a party or social event that your significant other dragged you to. The mask that you are wearing in order to convince everyone you interact with that you are so happy to be there when you are dying to be home in your sweats on the couch watching Netflix where no mask is necessary.

Masking, we all do it from time to time, but for autistic people, their masks are used as frequently and are as worn out as the N95’s in a pandemic. Trying to fit in, be like everyone else, practice all the social etiquette and nuances that are required day in and day out regardless if they are at a party, sitting in the school cafeteria, hanging with family or just walking through the mall. Masking is what many autistic individuals do in order to blend in when their body is screaming to stand out.

I know that my 19 year old son Ryan masks in many instances. Maybe it’s when he’s sitting in his college dorm room and his body is screaming to let out a loud script, but he knows that is not what the neurotypical world finds acceptable, so he masks up and holds it in. As his mother, I see through the mask. I’ve seen him pull on the mask as he tries to prolong eye contact, make nonsensical chit chat, interpret an idiom or some vague phrase and hold in a script that is bursting to come out. It has to be exhausting. What is fascinating to me is how quickly Ryan can change or remove the mask.

A few weeks ago, when Ryan was still home from college taking virtual classes, I heard him in his bedroom scripting some meme or vine at the top of his lungs. I looked at the time, it was 12:58 PM. I knew that his class started at 1:00. I waited to see if I heard him again. I did. Even louder. I checked my phone for the time again, it was 12:59. I jumped up from my lunch at the kitchen table and made my way upstairs watching the time and hearing all kinds of hoots, hollers and phrases coming from Ryan’s room, then at precisely 1:00, silence. I waited outside his door and listened. A moment later he chimed in with his classmates.

The autistic mask had been removed and the neurotypical mask was in its place. This mask shuffling is equal parts astounding and heart breaking. The fact he is asked to mask who he is every day with almost all interactions makes me both angry and sad.

Yeah, I know we all mask, somewhat. Chances are, the person your coworkers see is not the person your closest friends see, but most of us don’t have to make a conscious effort that goes against the actual biology of our brain to be someone, or something, we are not.
I am frustrated and saddened that even when this pandemic ends and Ryan can finally get rid of his paper, scratchy surgical mask, he will still carry a mask regardless of where he goes and who he is until one day, the neurotypical world will accept that neurodiversity is not something one should cover up, but something to be seen, accepted and celebrated.
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This acceptance, starts with you.

​“You’re gonna have a lot of time on your hands” or “What are you going to do with all your free time” are the lines my friends say in jest now that my son Ryan is in college and appears to be doing well without me. Like, really well. And 99% of the time, most of my heart takes it in stride and laughs with them, but there is a small part of my heart, the part that belongs to this once scared, anxious, confused little boy who has now grown into an independent, wonderful young man who still owns this piece of my heart’s real estate, that has left me feeling like time is not filled with glorious hours of “me time”, but rather in some ways, it feels like time has stopped. And I just keep waiting for it to start ticking again.
 
This is all part of the journey and like every phase of the journey that we have worked so hard at together, it’s now time for me to stop watching the clock and let him find his own way, in his own time with me occasionally checking the time from a distance. We started on this journey together and there have been difficult and beautiful times just like most mothers and sons, but where our journey differs is that for years, and literally until the day he left for college, I was his time keeper. I was his voice. I was his advocate. And yes, in many ways I was his enabler. Why keep time, why advocate for myself, why do my own laundry, when Mom is here doing it for me! He had his role and I had mine. And now, just like time, those roles are changing.

From the first moment in the doctor’s office when I said, “something feels different” as my toddler screamed at the doctor’s touch then burrowed himself into me knowing I was his protector and would do whatever I could to keep him safe, to all the moments of advocacy I have fought for on his behalf, I was there and he was too. The two of us, in synch, together.

And it’s not a coincidence now that he is 75 miles away that it feels like time has stood still, because so much of our lives together did revolve around his time. His need for routine and schedule which helped him to feel safe and calm, kept me always planning, always on time, always in time. Without my son at home reminding me it’s time to do laundry because none of his five favorite shirts are clean, we can easily go a week without laundry being done here. When there is no one to say, “We need more Cinnamon Toast Crunch” there is not a great need to run to the grocery store every Tuesday. Routine, schedules, life and time itself has changed.

From haircuts to dentist appointments, from new shoes to new schools, from meltdowns to victories, I was the big hand and he was the little hand, working with precision as the pendulum swayed keeping a steady, correct pace. We were a team and together we educated, we advocated, we fought, we cried, we laughed and we learned. Together.

And of course I know the goal since we heard “autism” was in time for him to gain independence, for him to manage his own time and for him to one day pull farther away until he could be his own voice, his own advocate and he is doing it and I feel as happy as I feel lost. I feel as filled as I feel empty.

So yes, when my friends say, “You have a lot of time on your hands now”, with a teasing smile, I chuckle and agree. But inside my maternal clock is looking for the little hand that was always in synch with the big hand.
 
I know that time does not stand still for anyone, but mothers of differently abled kids, time is all we have ever focused on. Whether it was fear of the future or guilt of the past, the present is a time that we rarely allowed ourselves to embrace. Well here he is and here I am, in the present, learning from our past, looking forward to the future and knowing that time does go on. And the one most overriding emotion I feel in this present moment is pride. This is my son’s time. Not mine. “Our” time has passed. And that’s EXACTLY how it’s supposed to go.
 
The gears on a clock is what make those clock hands continue to move, keeping time going with one goal in mind, perpetual motion. My son is moving forward and so am I. Time will keep moving forward and I will find a way to fill my time as I watch happily as he fills his time with new adventures on his own. And damn does he deserve it.

First of all, I don't look good in hats. I've never really had that good hat hair or a good hat face, so I guess it's ironic that, like most moms, I wear many, many hats. ​

I am the mother of three incredible kids, Kyle, Ryan and Emma. Every day I wonder what I did to deserve them and I thank God, the Fates and whomever for believing that I did in fact deserve these three fabulous children, despite all of those not so deserving moments during my college years. However, when my middle son Ryan was diagnosed with autism, initially, I also cursed God, the Fates and my sinful college years for taking my son and my family on a journey we never asked to embark upon. 
​
​Autism became part of our vernacular over 12 years ago and since the day we heard the word, "autism", I began trying on and wearing many different hats. Although my mom hat is without a doubt my most well worn and beloved hat, I have my advocate hat, my blogger hat and my trainer hat that over the past few years have seen their fair share of wear and tear.

When you have a child with any kind of different ability, you quickly go shopping for an advocate hat because you know that there is no one advocate hat that is going to fit like it fits on you. You wear that hat while you search the internet for therapists, doctors or dentists who will "get" your kid. You wear it to IEP Meetings, to restaurants, the grocery store and on vacations ready to fight for your kid and educate anyone who will listen. Sometimes you wear your advocate hat right over top of your mom hat which may look ridiculous, but, you know it's necessary.

When advocating in the check out line at the grocery store didn't seem like enough, I decided to start a blog (with Ryan's permission), entitled The AWEnesty of Autism over six years ago. Time for a new hat. I truly thought maybe my mom would read my blog and she does (or at least she says she does), but, I never imagined the number of moms who were looking for a safe corner of the internet to share their hopes, their dreams, their tears, their ugly mom moments and their well worn hats. More importantly, I never dreamed what my readers would give to me. It is indescribable and I am so grateful to each and every one of them and their sons and daughters for their willingness to let me into their hearts while wearing my blogger hat.

Not long after getting used to how I looked in my blogger hat, I found myself trying on a new hat. As a former juvenile probation officer and the mother of a son with autism, I was asked to work with Pennsylvania's ASERT (Autism Services, Education, Resources and Training) Collaborative. In the past four years, as their Justice System Consultant, we have trained over 6,000 police officers, probation officers, judges, attorneys, detention staff and child welfare staff throughout Pennsylvania on how to safely interact with individuals with Autism Spectrum Disorder. The positive response to this training and the universal need from all aspects of the justice system has been incredible and I am so very grateful for the opportunity to educate these audiences who are so willing to listen. After each training, I come home and take off my trainer hat and put on my mom hat and I'm thankful that each one fits me well.

Along with my many hats, I also wear a bracelet regulary with my favorite quote from Mark Twain, "The two most important days in your life are the day you are born and the day you find out why." I've been blessed to have three important days. The day I was born, the day I became a mother and the day we heard the word "autism". That last day took me a while to realize the impact it would have not only for my son, but, for my family, for me and for the people I am fortunate enough to interact with wearing all three of my hats, even if I don't have a good hat face. 

​For years, when my son Ryan was younger, vacations were tough. Really, really tough. Needless to say, breakfast with Donald Duck and hundreds of fellow Disney World tourists is not part of his regular routine. Throw in the sensory overload of Disney World that can take the most hearty sensory system down, well, like I said, vacations were often really, really tough.

So skip the sensory overloaded Disney World trip right? I mean, obviously, if it’s tough don’t do it. But guess what, a week at the beach, the lake, grandparent’s house, etc all are still not part of my son’s weekly routine. Most of the time, he can get through it, but, what kind of vacation is that for him…getting through what is supposed to be relaxing down time with friends and family.

I have learned over the years that vacations can be enjoyable for my son as long as we prepare ahead of time. New location? Let’s check out some pics on Google of things to do, things that would make him happy and not overload his sensory system. New hotel? Guess what, almost all hotel sites have photos of their property. Not only can you look at them online, you can call and ask for a room that might be away from the elevators, the lobby, etc, someplace quieter. Ask if there is a small conference room your son or daughter can chill out in when the tight quarters of the family are too much. If your son or daughter finds water soothing, find a hotel with an indoor pool where he can cool off and get a much needed reprieve (and make sure to find out how secure that pool area is so as to avoid any safety concerns). New restaurant and a picky eater? No worries if there is no grilled cheese on the menu, just call ahead and ask if they could make one or if you can carry in your son or daughter’s favorite food from somewhere else.

My son will often say, “I don’t know what to expect” so by doing what we can before we jump in the family truckster on our summer road trip and preparing him for how we think the vacation will go, certainly helps. In Disney World, he loved checking the itinerary for what was next. It helped him prepare his body and his mind for what was coming. Obviously, most of us have no crystal ball so we can’t predict what is going to happen, but, we can do our best to help prepare our kids so the unexpected isn’t quite so, well, unexpected.

So, you finally heard it. The word you may have been both searching for and hiding from. Autism. And with one six letter word, your world tilts on its axis and you tilt with it.

Been there. Done that.

It’s been 12 years since my son was diagnosed with autism. That’s twelve years of doing the best I can to right both his world and mine, not by disregarding his diagnosis, trying to “fix him” or make him be someone he is not, but, by learning, advocating and sadly, screwing up. I’m still apologizing for some of my mistakes.

You will screw up. You will second guess yourself. You will make huge progress then with one FB pic of your kid not making the cut to a party, a dance, or some other social event, you will tumble backwards again. You are human. But even with all your human frailty, you will pick yourself up, dust yourself off and move forward again because your kid needs you to be upright and moving forward. Nothing good comes from looking back.

In those weeks when I struggled to get up, and had no idea where to go once I did pick myself up and brush myself off, I wish I would have had someone to guide me. Someone who had been there, done that. Someone with just a few hints on how to help me help my son in order to try and "right" our world again. Someone with a few words of wisdom.

For those of you looking for such wisdom, here are a few words that may not make you wiser, but, might help you feel more centered:

Breathe. Holding your breath and hoping this diagnosis was wrong and that if you just ignore it, the world will be as you expected once again will cause you to turn blue and pass out. Your son or daughter needs you to be upright and breathing.

Look for parents who have been there, done that. Whether it’s a support group or a friend of a friend, look for support. Better yet, look to an individual with autism. Who better to educate you about autism?

Find your person. You will need one. Someone you can share your child’s triumphs and joys and your progress and setbacks. Find your person and hold them tight.

Care for your child AND for you. There is so much to learn, so many appointments, specialists, therapies and IEP meetings. Don’t forget when you are busy taking care of everything and everyone, to include yourself on the list.

Learn everything you can about autism then tweak what you have learned and personalize it for your son or daughter. Just like neurotypicals, there is no one size fits all for autism.

See your child. I mean really, truly see them. Don’t look at your son or daughter as a collective disorder, see them for the unique individual that they are.

Stop Google searching. In fact, run like hell away from it. Your child is not there. Don’t try and find them on the internet. They are right in front of you. Please don't try and find your son or daughter somewhere else. Let them guide you.

Accept your child for who they are, embrace them, love them, celebrate them so that they will celebrate who they are too.

Remember you are human. You will help your son or daughter feel safe, happy and accepted, but, you will make mistakes, don't belabor them. It's ok, your child will forgive you as long as you learn from that mistake and forgive yourself.

Advocate for your child. No one knows him/her better than you do, however, as they get older, if possible, help them gain the skills to advocate for themselves. 

Laugh often, laugh hard. Many things will throw your world off it's axis, the world is a crazy, spinning, unpredictable place, so when you fall down, stand back up, brush yourself off, laugh a little at your stumble and move forward. Your child is watching you and you need to show them that autism is not bad or less, it's just different and different is not the end of the world, in fact, it's just the beginning of a new one.

This post was created with the help of my 17 year old son Ryan, who is autistic. Thank you Ryan for offering your insight as you continue to take on a world that you struggle to understand and that struggles to understand you day in and day out with such courage.

As a mother of a teenage son with autism, I often wonder if the reason my son spends so much time alone, is because the world, especially the world of teenagers, doesn't understand him. Sure, my kid struggles to understand some of the social rules of teenagedom, due in part to his autism, but, how can we expect neurotypical teens to interact with our autistic teens if we don't educate them on some of what they may see?

Ryan and I came up with a few examples of what a Neurotypical Teen (NT) might see and what an Autistic Teen (AT) might want them to see:

NT: Oh, that autistic kid is sitting by himself again. Guess he prefers to be alone.
AT: Yeah, sometimes I’m afraid to take a risk socially because I'm worried I will mess up, and sometimes I do need a break from people, but, sometimes being alone is lonely.
 
NT: Check it out, the autistic kid is talking to himself again.
AT: I kind of am talking to myself, (it's called "scripting"), but, that’s because I am remembering a funny movie, meme or YouTube video. If you ask me, I might share it with you and make you laugh too.
 
NT: Uh oh, he’s gonna lose it, check out how fast his arms are flapping.
AT: I bet when you get anxious or excited your legs bounce up and down or you twirl your hair or bite your nails. Same.
 
NT: You know, that autistic kid never responds and he hardly says anything.
AT: Sometimes it’s hard to turn my thoughts into words, but, that doesn’t mean I’m not listening or that I don’t have something to say.
 
NT: That dude doesn’t really seem to get me or how I’m feeling.
AT: Sometimes I struggle with reading the emotions of other people unless it’s really obvious like you are laughing or crying. I do have a lot of empathy though, once I know what you are going through. You just might need to share with me how you feel.
 
NT: Sometimes that autistic dude is a little too honest.
AT: You are right, I am honest. It doesn’t occur to me to lie, even if a lie might spare your feelings. I don’t mean to hurt you with my honesty though.
 
NT: That autistic kid's parents must never take him shopping, because he wears that same shirt ALL THE TIME!
AT: You’re right, I do wear this same shirt ALL THE TIME, but, that’s not because my parents won’t buy me new shirts it’s because I feel more comfortable when things remain the same and there is nothing more comforting than a worn in t-shirt.
 
NT: You know, it’s hard to trust someone who doesn’t look you in the eye.
AT: Eye contact is hard for me, it can be very distracting and upsetting to look you directly in the eye. It doesn’t mean that I’m not listening or that I am not trustworthy.
 
NT: Wow, that autistic kid is so weird.
AT: If “weird” means different, you are right, but, how boring the world would be if we were all the same! Take a chance to get to know me, you might find we have more things that are the same than different (“weird”).
 
NT: Wow guy, I was JUST trying to give you a pat on the back to let you know you did a great job, you didn’t need to shove me.
AT: Thanks for feeling proud of me, but, sometimes unexpected touch, like a pat on the back, doesn't feel good to me. Just telling me you think I did a great job will make me feel happy.

NT: I don't know how to talk to that autistic kid, I'm always afraid I will say or do the wrong thing and freak him out.
AT: You might say or do the wrong thing, but, so do I, that's what makes us more alike than different. Even if we both say or do the wrong thing, I promise I will always remember that you tried.

NT: Wow, I just talked to that autistic dude, and he is really pretty cool!
AT: Told you.

NT: (Days later): Hey Ryan!
AT: Hey dude! ("Finally.")

​What does kindness look like? We know kindness can "look" like many things. A kind word, a nice gesture, a charitable contribution, or just showing up. An act of kindness is  much easier to discern than a kind person.

It’s hard to know who to trust, who we can count on, who will have our backs or who will betray us. It would be nice to have some type of radar that immediately goes off warning us to stay away from THAT person. To some extent we do, especially in extreme circumstances. Walking alone on a dark street at night and someone stares at you a little too long, it tends to make your radar go off. You may feel the hairs on the back of your neck stand up as your steps quicken because you just got "a bad feeling”, but, in normal everyday life, in everyday situations, our radar may not signal us.
 
The friend you thought you could always count on, one day ghosts you. The spouse you thought would never cheat, blindsides you with, “there is someone else”. The boss who always had your back until one day they didn’t. Of course hindsight is 20/20, but, regardless we always ask, "Why didn’t I see that coming?" For many people with autism, seeing it coming can be even more challenging than it is for us neurotypicals.
 
My son recently asked me why it takes so many trials to figure out who is kind. He wondered why we can’t determine who we can trust, who will show up, and who won’t hurt us immediately. “Why can’t we figure that out in one trial?” he asked. Or better yet, why can’t we just know "by looking at someone" if they are kind? A built in kindness radar, wouldn’t that be something?
 
It broke my heart to tell him that we usually can’t tell by just a look and that it often takes time to determine the different levels and types of kindness, some are authentic and some are not. Some kindness is all about the receiver and some kindness is all about the giver. There is the, I am being kind because I need/want something from you. And the, I am being kind because my mom told me I have to. There is also the, I am only kind to you when none of my cool friends are around. And the one he struggles with recognizing the most is the, I am being kind because I feel sorry for you.
 
But there is also good kindness. Really, really good, genuine kindness. Kindness you can count on, that is authentic, that is real and that always, always shows up. There is the, I am being kind by putting your needs above my own. And the, I am being kind because I love you and I want to make you feel that love. There is also, I am being kind because I want you to be kind to me too.  And last, but, certainly not least, there is your very basic, I am being kind because it feels better to be nice than to be an a**hole. My son got it right though, it takes multiple trials, it takes time, it takes getting hurt, being betrayed, learning from our mistakes and it takes risks to determine the real versus the phony, the moment versus the long haul and the selfish versus the selfless, in other words, it’s not easy. And that is why my son spends most of his time alone. He wants a kindness radar and I can’t give him one.
 
We talked about the people who have shown him kindness and what that felt like. The theme was consistency, love, safety, support, concern and seeing him, really seeing him and accepting him just as he is. I told him that although he may not have a radar, he has these positive experiences that can act like a bit of a radar for him. I also reminded him that kindness is a two way street and that in order to get kindness you have to give kindness and to do that, you have to take a risk by letting people in, and this is where he falters.
 
My son's very black and white mind is terrified of that risk, determining real kindness from phony kindness can be a very gray area. Whether it’s how a new shirt will feel or how a new food will taste, or if this person or that person is kind or will hurt him, he wants to know how it’s going to turn out. He wants a kindness radar. My God, don’t we all?
 
I continue to hope that one day there is someone, some potential friend that will trigger a good internal feeling, his own kindness radar, so to speak, that will allow my son to take a risk so that he can feel confident in knowing what it means to give and get kindness because even though it's dicey and there are no guarantees, kindness (and friendship) really is worth the risk. 

​I could feel her emotions in a text. Not because she included 32 different emojis, that let me know exactly the range of emotions a visit from her autistic son’s caseworker to her home made her feel, and not because her text was in all shouty CAPITALS, and not because I was sitting across the room from her and could hear how hard her fingers were tapping on her phone screen. No, I knew what she was feeling because I’ve felt it too. And I’m betting you have as well.

The caseworker is required to stop by every six months to make sure my friend’s son still qualifies for services, services that were initially started based on the score of an IQ test created by a neurotypical, verbal human a bazillion years ago. The range of emotions that comes when someone, some stranger, some “expert” puts a check next to a box that they believe your son or daughter fits in, well, you don’t need emojis or shouty capitals to know the range of feelings that box evokes.

My friend’s son and my son both have autism. How autism impacts their lives is different in some ways and similar in others. First and foremost, they are both incredible human beings. Incredible. My son, however, is verbal and considered “high functioning” and my friend’s son is non-verbal and most would consider “low functioning” which is where this boy and his mother both cry bullshit. And from a mom whose son may seem “better off”, I cry bullshit too.

I know that we put people in categories for various reasons, mostly so we can sort them out, get a picture of who they are, what they do, where they came from, how they self-identify and who they love by checking a box under categories for items like race, gender, sexual orientation, ethnicity, occupation, etc, but, trying to group a human being by their level of functioning is so ambiguous, so subjective and so unfair and thus so goal limiting, it is downright ludicrous. We cannot sort out and put humans in a category, a box, if we don’t even know how or what to ask to determine who they are, how they think, and where they “belong”. If we have yet to accurately sort out how their brain functions, how can we sort their brain functioning into a pre-determined, categorized box?

How are we to know my friend’s son’s functioning level when we have yet to ascertain how his incredibly beautiful mind works? And if a boy is so extraordinarily in tune with his senses, his surroundings and his people, how can we not see THAT as “high functioning”? For someone who is non-verbal and unable to communicate as society expects, to ask that person to answer questions on a survey or on an IQ test designed for people who are verbal and who process information the same way as the survey designer just so we can fit them into some predetermined box, of course society will not deem this young boy’s functioning level on par with those who can communicate verbally or who score a certain level on an IQ test. We may not have found the box my friend’s son belongs in because there is no one size fits all box. And if a person is told, “I’m sorry we have not yet found the right box for you, so we will just stick you in this box with others who are kind of like you”, how will that individual ever believe there is a different box, a better box, a more fitting box he or she belongs in? I cry, "bullshit".
​
And for my son who is “high functioning” that puts him in a box he doesn’t always fit in either. Sure, he can do trigonometry and write a beautiful essay on a poem he read, but, he still struggles with social nuances, social communication, disrupted routines and vague language, but, because he is placed in the predetermined “high functioning” box (by neurotypical people who process information and define intelligence by a set of questions and answers), when my son doesn’t perform well in areas where he struggles, he is deemed lazy, uncaring or disingenuous and I cry, "bullshit". Again.

I know that we will always have a need, a desire to understand humans by categorizing them, labeling them and finding where they fit, but, we have to do better for those who don’t "fit" in our preconceived ideas of intelligence or functionality.

We have gotten better in some areas. We now recognize that not all individuals identify with the boxes of “male” or “female”, “gay” or “straight” because somewhere along the way those individuals who did not feel as though they fit in a predetermined box cried, “bullshit” and people started listening. It starts with a cry, a shout, a step. It starts with listening.

This is my cry of bullshit. This is my shout to please stop trying to put individuals in a functionality box until we explore every avenue of the various ways humans function. This is my step to get others who believe this to advocate for yourself, your child, your adult son or daughter. This is me asking people to listen. Please.

After the caseworker checked the box where she believed my friend’s son fit, my friend looked at her son and told him this:

“That test means nothing and you are the smartest little boy I know and my hero which makes you extra awesome.” 

In other words, she cried “bullshit”.