I am sitting here holding my book... thumbing through the pages. I am quite aware of it's heft in my hands, and I am in awe that it is real.
The cover design was all me - a bit artsy as it is just a bit blurry - a visual representation of how we tend to have trouble really seeing our children under the autism behaviors. Not sure if anyone would even understand that just glancing at the photo.
The inside is completely organized the way I wanted it to look - breaking sections into small digestible pieces that can be read and set aside easily when life interrupts, because life always interrupts . . .
The foreword brings me to tears every time I read it - my oldest son wrote it about his brother. It grabs my heart every time.
I look at the reviews and I am in awe of each one - 5 stars - their
kindness and their candor means so very much to me. I feel blessed.
Even the reference pages make me proud - so many scientific studies
that highlight each point. The scientist in me would have it no other
Then there's the real-life stories... so many stories. Stories that reveal how I found the clues I did - the clues left for me by my youngest son as he attempted to train me to communicate with him his way. A journey toward understanding. Discoveries and subtle details. A winding path. A road less traveled. Hope.
I hold the book and I can barely believe it. No one else has ever written about the non-verbal communications provided by the autistic child in their attempt to "speak" to those they love. It's the first book of it's kind - and I feel honored to have written it (does that make sense?)
This is a memory I will always hold onto... the fulfilling of a dream . . .
So many of my dreams were never realized - life happened, you see. But
this one, this dream I had for myself, this one came to fruition - and I
am allowing myself the time to just "feel" it all.....
Waxing poetic... it's what I do... I write and I know things... :)
Books are available on Amazon - https://www.amazon.com/…/109…/ref=dbs_a_def_rwt_bibl_vppi_i0
Matt has moderate / severe autism, is mostly non-verbal, and is awesomely independent!
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Meet the Author:
I was asked once, "How does one person change the world?" My reply was, "One story at a time".
The diagnosis of autism was a rare one back in 1988 when Matt was diagnosed - only 1:10,000 affected. Then the numbers grew.....and people began to notice. I went from trying to explain autism to those Matt met each year, to really promoting autism awareness through my stories and speaking engagements using this website.
Now most people have heard of autism, and this website is now global, with 126 countries and over 6 million fans.
Of course, we still have a long way to go to make this world a better place for those on the spectrum. So the stories will keep coming, and the world will keep changing – one story at a time.
Thank you for helping me promote autism awareness, for your willingness to listen, and to open your heart and mind to the mysterious puzzle that is autism.
Protecting Tara - new Story!
This story was relayed to me by Christopher’s girlfriend, Tara, and verified by Matt.
Matt has lived on his own for 5 years, and in those 5 years I have picked Matt up every weekend, taken him grocery shopping, and made sure he was ready for his week, for all but a handful of times. A few weeks ago I caught the flu and could not get Matt for his weekly shopping trip. Tara offered to do it for me and I gratefully accepted the help.
They had gone to a nearby Foodlion. It sits on a hill with other stores nearby – including a Pawn-shop that sits directly across the parking lot. As they got out of the car a woman approached them. Feeling uneasy about the woman’s behavior and body language, Tara told Matt to go ahead and go into the store. Tara was channeling her mother’s instincts and was immediately in protective mode. Unexpectedly, Matt ignored her.
The woman asked Tara if she could borrow her ID for the pawn-shop . . . a totally strange request. Tara, not wanting to be confrontational, simply replied she didn’t have it with her. The woman continued to ask various questions, not willing to just let Tara alone. As the conversation did not end, Matt decided to move in closer.
The woman finally did leave and they proceeded into the store to get Matt’s groceries. The entire encounter was maybe 5 minutes. The thing to notice here was the non-verbal communication from Matt during this brief encounter. Matt did not go into the store when asked to. Instead he chose to stand his ground. He understood the strange woman’s body language. He felt the threat. He could’ve left – but he didn’t. During the verbal exchange between Tara and the stranger, Matt stepped even closer to Tara. Matt sensed trouble, and instead of stepping back, he stepped forward – he was in protective mode.
Matt’s a big man, standing 5’ 10”, full beard, 200 pounds. If you know him then you know beneath that intimidating exterior is a teddy bear. But this woman didn’t know him and he looked at her with that “go away” stare. Matt purposefully stood taller. His body language was a warning. He also moved closer – proxemics. Matt stepping closer was his “I will protect you”. If this woman made any threatening moves, Matt was ready to come between them. I know because I asked him.
“Were you scared?” I asked.
“Little” Matt replied.
says "little" regardless of his level of fear. There's no telling how
fearful he really was . . . and it didn't matter.
So, even with fear building, Matt chose to protect. And let’s not forget the stare . . . that had to be so difficult for him. To look purposefully at a stranger . . . it was brief, but it was a stare. A very rare stare. Matt was determined to make the woman go away. Not being able to grasp the right words, Matt simply used all his other forms of communication to express concern, courage, protection, and love for the newest member of our family.
“She was stupid” Matt told me.
“What do you mean, Matt?” I asked.
“The Pawn-shop was closed” and he giggled.
“Were you protecting Tara?” I asked. “Exactly. I protected MY Tara”.
It’s very easy to see Matt as a young man with a sweet and calm personality. It’s easy to feel the need to protect him – he seems so very innocent. In reality Matt is a 33 year old man, smart as can be and has the protective instincts of a fully grown, fully aware man, protecting his family.
That was HIS Tara. He would protect her, even if he were afraid. On their way back to Matt’s apartment a Tom Petty song came on – “Won’t Back Down” and Matt seized upon it to relay one final message to Tara. He sang with the all the gusto he could muster – loud and strong – his way of saying he would not back down . . . he would protect her. Matt uses music to convey the words he can’t find himself. I know when he is trying to do that by how he sings. He belts it out. The loudness of his voice is his way of saying, “Listen to me, please. This is what I want to say”. I explained this to Tara when she told me the story of what had happened at the grocery store.
Needless to say, Tara sees Matt in a whole new light now. Tara now sees the Matt I see. Makes me smile every time I think of it.
This past weekend I asked Matt to tell me the story. He thought hard for a moment then shook his head. “The question is too hard” he said . . . his eyes pleading with me to help him. So I said, “Okay, how about I tell you the story and you tell me if I got it right?” I replied. A look of relief came over him and he smile and nodded. After we talked about the encounter, and as we drove to the store for our weekly shopping, Matt put in a Tom Petty CD, forwarded to "Won't Back Down", turned it up and sang loud and clear.
"You can stand me up at the gates
But I won't back down" - he belted out loudly . . .
"Is this song about you?" I asked, already knowing the answer.
"Of course!!" he replied.
There, in the song, were all the words that needed saying . . . Matt would protect Tara. He would not back down – even in the face of great fear. Matt would stand at the gates of hell, if needed, to be there when it mattered most.
This is Matt.
AWARENESS is EVERYTHING
There may be a day when Matt will not get a photo with the Hokie Bird …. But it will not be this day.
That was my train of thought as we prepared to go to the 2018 Spring Game at Virginia Tech. Last year we didn’t get that desired photo – the Bird never got close enough and we could not get through the crowd when he was. Matt had several photos, some taken at a distance and a few close-ups, but it wasn’t a “win” if he didn’t get a hug. Now, a year later, Matt was overdue for that Hokie Bird hug. His resolve was as great as my own when we arrived on the campus. Both Matt and I knew today was most certainly going to be the day.
It was a beautiful day – warm and breezy. Matt was in high spirits. It was looking like the perfect day – and in all respects so far, it was. As with every “big day”, Matt had not slept the night before. Too much excitement, too many hopes and dreams on the line to rest. He was running on nervous energy – focused liked a laser on hunting that Bird.
We entered the South gate and walked around and did the tunnel lap. As we walked I had Matt practice, “Hi Hokie Bird! Can I get a picture?” Matt practiced the sentence several times until he felt sure he could do it. If he found the Hokie Bird and I wasn’t with him, he needed to be able to speak the words – or be ignored like he was at the Duke game. At that game, Matt simply could not say the words and I was much too far back to help him… he never got his hug.
We had time to kill and so we went window shopping at the
Hokie Store, checked out the views from various openings and took pictures –
lots and lots of pictures. No matter where
we were or what activity we were doing, I knew Matt was on the lookout for that
elusive rare creature. We all looked,
but none of us spotted him. It was time
to find our seats.
We found some great seats on the South end in the end-zone –
Matt is very fond of the end zones more than the general home team stands. In his mind, the Hokie Bird loves the south
end zone. That’s because there were several
fall games over the years where we witnessed the bird hanging out and crowd
surfing at exactly that location – and now, this is where we go in hopes of not
just watching, but participating in the fun.
Unfortunately, the last few years the Hokie Bird had avoided the southern end-zone at the Spring Game. Would he again this year? Tom had come with us to help us in our quest – and that meant there were 3 sets of eyes straining in search of that maroon mascot.
It was getting close to game time when Matt yelled out, “I see him!” pointing toward the opposite end zone. There, just outside the tunnel, was the Hokie Bird, doing his happy strut in front of the general seating. We watched as he waved and strutted and did a cartwheel for the kids in the far end of the stands… but he wasn’t coming our way – nope - He seemed to just be focused on that one area – where loads of children had gathered to wave and watch.
Oh Hokie Bird, please come this way…. But no. The bird was pretty much going to stay right
where he was.
Will he get a chance to hug the bird? Will the bird come this way? Will he disappear like last year before the end of the game, giving us no way to catch him? I had promised Matt we would get that bird this year . . . I had PROMISED!
I jumped to my feet and shouted, “Come-on Matt!” before I even realized what I was doing. I headed down the steps and called behind me, “Hurry!” Matt popped up and hurried to catch up. This momma was on a mission, and Matt knew exactly what that mission was and where I was headed. But the way was blocked… only those with special passes were allowed on the field before the game. Matt was hesitant – because he knew his momma did not belong there.
We both made it down the steps, but as I went onto the field, Matt stayed behind the gate – hesitant and unsure. The closest official gave me “the look” – that stone face, immoveable, professional guard type look that makes even the biggest fans quake. He stared me down and said, “Do you have credentials to be on the field?”
“No sir, I do not.” I admitted, “but we need to get a picture of the Hokie Bird with this young man” and then I leaned in and begged. “This man is autistic and that Hokie Bird means everything to him. I just need a picture and we will come right back”. I’m a mom… a mom of an autistic adult who loves that bird… I am not above begging.
As I spoke to the official, Matt stayed behind the gate
watching. There he waited apprehensively
– He looked absolutely terrified, about to jump out of his skin. The look on the official’s face was doing its
The official looked at Matt and then at me, “You do not have
the credentials to be on this field” then paused a second and said, “so come right
back”. OMG!!! That’s a yes!
I turned and looked at Matt, “Come on Matt, hurry!!” Matt flew through the gate and rushed onto the field. I told him we could go after the bird, but we had to hurry. Matt stayed right with me as we sprinted down the sideline toward our target. The Hokie Bird had no idea of course, that he was being stalked, and he turned to head back toward the tunnel. No Hokie Bird, no!
Instead of the tunnel, the bird headed under the North stands and when we were within about 15 feet from him I yelled, “HOKIE BIRD!!”
The Hokie Bird abruptly turned and stopped. I was about 5 feet in front of Matt and had just a split second to explain to the mascot that we needed this – that Matt needed this photo. As I finished my sentence, Matt arrived - and the bird leaned into Matt and hugged him.
A hug. A Hokie Bird hug. I took their picture, then I used Matt’s camera and took a few more for Matt. Matt was smiling greatly – he had no words… They hugged again and we had to leave.
“Matt, I promised the guard that we would come right back – I promised…” Matt understood, and a way we flew back down the sidelines and back to the south end. As we approached the guard he asked, “Did you get a picture?” “Oh yes!!” I exclaimed as I whipped out my phone and found the few I had taken. I showed them to him. “You did a good thing today“, I said to the official, “you did a really great thing today….” The official smiled just for a second then immediately returned to the stone face professional – trying to hide his joy.
Matt and I returned to the stands, out of breath but elated. My knees screamed at me as I reclimbed the steps to my seat. When I finally got back to my seat Tom showed me the video of us sprinting down the sidelines . . . wow – we were really flying.
Matt spent the rest of the game relaxed and enjoying the
plays on the field and the antics of the bird on the sidelines. He wasn’t anxious. He was simply relaxed and happy. All stress had been removed.
Oh wait, but there’s more….
Toward the end of the 4th quarter guess who came down to the south end zone? Yes! “Matt! Go!” I shouted and Matt jumped up and headed down the stairs. Tom jumped up and headed down with him. My knees said – ‘no… sit woman’.
I watched as Matt inched closer and closer through the crowd that had quickly gathered to see the bird. I stood up, barely able to see the top of Matt’s head – but enough to know the Hokie Bird was right there with him. He was there quite a while, not wanting to leave I bet, and I wondered, did Matt say the words? Was he able to get them out? “Hi Hokie Bird! Can I get a picture?” You can do this Matt, I cheered silently.
Shortly afterward Matt and Tom arrived back to their seats, both were smiling ear to ear. Their body language said it all. But what I wanted to know - and I was about ready to jump out of my skin – was Matt able to say the words? I asked Tom.
“Yes!! He stuttered just for a second and then said, ‘Hi Hokie Bird! Can I get a picture?’ He did it! The Hokie Bird stopped and gave Matt another hug and a high-five”. Matt proudly showed me his pictures – he was smiling greatly - and giggled - but he couldn’t speak . . . not yet. A little while later he told me all about it.
I can’t stress enough how massive this all was. As a child Matt was fixated on Thomas the Tank. As an adult it’s the Hokie Bird who has his heart. It is not just a hug, not just a high-five, and not just one sentence spoken under stress. Each has an underlying emotion. Each was huge!!
It didn’t matter that he was 32 years old or that the Hokie Bird is just a mascot. To Matt, that Bird is EVERYTHING. Not only was he overjoyed by the pictures and the touch (hugs and high-fives), but Matt was proud of himself for being able to SPEAK to his most treasured “friend”.
And just so we are clear, that official on the field that allowed us to go after that bird, did so because AWARENESS works… I saw it on his face. That official understood the second I said “autism” that this was not just some fan wanting a photo-op. He got it… he bent the rules to accommodate my son’s needs.
Just as the Hokie Bird is everything to Matt – awareness is
everything to me. It allows me to do my
job the best way I can.
I am Matt’s ‘Bringer of Dreams’… and today, because of awareness, it was mission accomplished.
Board Game Teaching Math
Easter… the one day of the year that people celebrate hope. It is what I call a “spiritual contingency” - a hope for a future event or circumstance that is possible but cannot be predicted with certainty.
This year I was not disappointed in its arrival – hope emerged in the most unconventional way . . . via a board game.
Friday I took Matt grocery shopping and as he shopped on his
own, I walked up and down the aisles - just looking, just killing time. As I turned a corner my eyes immediately
caught sight of the orange and maroon box – Virginiatechopoly – a board game
spin-off of Monopoly.
Matt’s not much of a game player. He never wanted to interact in that way -
always afraid of “not doing it right” he would only watch. To him, it always seemed too complex, too
nerve-wracking, to actually take part.
He did try a few times with Trivial Pursuit, but only as a team
player. Being on a team took away some
of the stress – and he did manage to answer some questions correctly (which
built up his self-esteem) – but he remained leery of such games, and more often
than not, simply said “No” when asked if he wanted to play.
Ah, but this game, sitting there on the shelf in Wal-mart, had something no other board game had . . . it had Virginia Tech. Would Matt be so enticed by the VT that he would attempt to play? My mind knew that was a huge possibility – a contingency – not predictable with certainty.
A few minutes later I met up with my son and I showed him the game box that sat in my cart. There was no way I was going to buy this unless I saw that he truly wanted it.
“Look what I found!” I said excitedly. Matt’s face lit up as he picked the box up
and looked it over. “Wow!” he replied as
he handed it back.
“I was thinking of
buying this for you for Easter” I said, watching his facial cues as to whether
he would really approve or simply nod his head just be nice.
“Yes!” he countered back – with a smile and bright blue eyes
gleaming joy. I knew his answer was genuine.
I know Matt’s funds are limited, and if he had to purchase it himself he would’ve put it off for later – it was just a board game after all. But knowing it was a gift put him at ease in that decision, and he was more than happy to get it – that VT on the cover was already drawing him in . . . it didn’t matter that it was a board game.
I took him back to his apartment and we said our good-byes and the entire trip from his house to mine I imagined how he was spending his evening. I knew he had bought microwave pizza (his meal for the evening), and he would watch his new DVD (“The Last Jedi”) probably 3-4 times in a row…. And he would open the Virginiatechopoly box out of pure curiosity. He would look through it, and maybe even attempt the directions . . .
Later that night he called me. “Whatcha up to, Matt?” I asked. He took a breath and then went through his list of activities – he had fixed himself pizza for dinner, was on his 3rd viewing of his new DVD, and had opened the box to his new VT game. He went through the items he had found in there and I listened intently, all the while smiling . . . Matt was oh so curious.
I picked him back up for our regular visit yesterday. One of the items he brought to the Jeep was
his new board game . . . and my heart soared.
We did have an agenda already scheduled for the evening -
and it was full. We would watch 2 “Survivor”
reruns (the 2 missed due to weather), and watch “The Last Jedi” - Four hours,
at least, before we could play his new game.
Would I make it that long? It was
already 11:30pm when the movie finally finished and Matt immediately jumped up,
went to his room, and retrieved his new game.
He set it up the best he knew how as I stayed busy with random things -
knowing if he wanted my help he would ask for it.
Matt finally gave me the hint that it was time to play by
grabbing the instructions and waving them at me. He excitedly waited for me to join him. He couldn’t sit still. He kept readjusting his seat, and flipping
through the money to keep his hands busy – that excitement had to be released
somehow after all!
I sat down and helped him readjust the set-up of the game. Matt was eager to do everything right. I showed him how to divide out the money, how to make a bank, how to lay out the properties, and place the cards on the marked spots on the board. As soon as I would show him one example he would rush to do the rest before I could do it for him – Matt wanted to do this on his own as much as possible – he wanted to learn this, and he was ready to tackle the challenge.
He started to read the directions, stuttered on certain
words and then looked up at me with his “Help me, mom” look. I put out my hand and he eagerly placed the
directions in it, relieved to not have to read all that confusing material out-loud.
I read each direction, then re-stated it in words he understood or physically showed him what each meant – and Matt, so eager to learn – followed my lead. I listened to happy bursts of excited “Okay!” and “Ah-ha!” with each new discovery. Then he rolled the dice – and we began to play.
Every roll of the dice – whether it be him or me – was punctuated with “Alright!” and the intently focused counting out of each and every space. He bought properties – Lane Stadium and Cassell Coliseum, and the very highly coveted items – like the Hokie Bird. He went to VT “jail” – the HOME space for probation. He turned over cards – even a “Get out of Home free”. The cards were not “Chance” cards, but “Contingency” cards . . . to remind us that nothing is predictable . . .
We played for 2 hours. Matt struggled with adding and
subtracting – i.e., totaling the dice, and dolling out rent payments. This was a huge handicap for him growing up -
one he overcame with calculators in his real life. Now that challenge was once again set before
him – and he didn’t have a calculator.
He had to practice using math skills long forgotten, and he was rusty. He would struggle. I would lean in slightly and show him how to
do it (not do it for him) and then lean back out and watch him do it himself.
Matt lives independent for the most part. He does so much on his own, but Matt can’t do
finances very well. He relies on a
calculator and greatly upon his momma to figure out those things. And yet, as the game progressed, and Matt was
forced to deal with his pretend finances, I noticed a change. A small, subtle, evolution was
Matt would look to me for each payment (whether it was him owing me or me owing him) and I would walk him through how to give change. How to count it out. How to find resources for each payment required, and over the course of those 2 hours I noticed him needing less and less help with his math. Skills were being taught and he was eager to learn them. He paid attention to all the details – and there were no scowls or frowns. There were no, “Can’t you just do it for me” looks…. Matt was determined to do it all himself – and that determination meant he was facing that struggle head on. I was quite aware that I was watching a transition…. From “maybe one day - maybe possible” to “probable, but without certainty”. I found myself smiling, watching, and listening. That voice in my head gleefully saying, “Wow Matt, look at you!”
It was almost 2am and I couldn’t keep my eyes open much longer. The game was going to have to end – momma was wimping out. We had bought all the properties, but unfortunately, we had not put any “diplomas” on them yet. That would have to wait for another day.
I asked Matt if we could stop for the evening – and he was
good with that. We made plans to play
again next weekend with a much earlier start time. There
was more to learn after all, and much more game ahead – the future would have
to unfold slowly, as always.
As we picked up the tokens and cards and organized the money I thought about what Matt was learning and what new hope for the future had just emerged this day – subtly…. stealthily….as we played a simple board game.
- Matt interacted for 2 hours straight without a break.
- He read, and he learned new vocabulary terms.
- He practiced math skills.
- He used critical thinking skills.
- And he made a mental list of all the VT areas on campus that we had not visited yet (which means I know where we’re going this summer!).
Of each of those listed, numbers 3 and 4 mean the most. Matt needs to be able to do his own finances and every time I have tried in the past I was met with resistance. There was no resistance last night.
Actually, it feels very much like I just rolled doubles, and
got a Contingency Card – the one that says, “Proceed to Go, collect $200”, the kind of card you need when you’re low and struggling
and all you have left is hope . . .
“Contingency” – yes. Because I now have renewed hope for “a future event that is possible” even though I know that his future “cannot be predicted with certainty”. I want what Matt wants - total independence – something he can’t have unless he can do his finances.
But . . . The
future’s not known - it can’t be predicted with any certainty. So you are left
with hope. Hope is possibility. Hope is
looking toward a better tomorrow.
no better day to be reminded of hope than on Easter – the spiritual contingency
for the future.
No matter the day, no matter the obstacle, there’s always hope.
Happy Easter everyone!
am coming out . . .
I have been floundering off and on since my sister’s death. Days come and go and run together and the only constant of the last year is the deep longing for my sister… I’ve been lost without her. It’s different when you only had that one connection to your family – and then it is no more. It’s different than losing one member of the family – still utterly painful, but you have people still in this world who have known you your entire life. When there is no one in the world who knew you that intimately, and for that long, it feels bigger and more overwhelming…. And so I’ve been floundering.
To come back – to re-enter the world – I’ve been doing soul searching research as to who I really am. Who am I without that connection? Am I who I thought I was, as reflected back to me by my sister? There’s quite a bit I have found out about myself… and it is both enlightening and scary.
I found out I am autistic a few years ago. It’s something I use to wonder about when Matt was not yet a teenager. Why was it I could so easily read his body language and gestures when no one else could? No one saw all the small details I did. I assumed it was because I was so intent on learning them that I noticed them – but that didn’t really cover it all. Matt’s in his 30s and we still have a bond unlike any bond with other people… because he reads me and I read him. Most of our conversations have little to do with words…
When research started suggesting a link between autism and genetics the ever skeptical part of me was not ready to jump on that band wagon… it took years and multiple studies to convince me. Once I was convinced I started to entertain the thought that maybe Matt got his autism from me… And still, every time I entertained that thought I pushed it away. I didn’t seem to have THAT much in common with Matt – he is, after all, classically autistic… so does that make me mild, or maybe just seeing similarities that are not really there? Each year the voice in my head would bring it up and each year I would push it away.
I never knew another autistic person besides Matt – not for many, many years. My understanding of autism was all autistic people were like Matt. It wasn’t until the rise of the internet and autism awareness campaigns did I learn about a spectrum, about “no two autistic people are the same”, that females are less diagnosed than males… all things about autism that no one knew while Matt was growing up. During those years before the internet, I was always focused on the myths surrounding autism that came from the medical community - the “world of his own” and the “lack empathy” myths that unfortunately, still circulate today… I never actually wondered about the difference between male and female diagnosis rates, or what other people on the spectrum were like. All of that came much later, after the blogs surfaced and the research and the Autism groups…. That’s when I learned about autism as a whole spectrum with massive variation.
The past few years Matt has been doing great – growing and learning and showing that even someone on the severe side of that spectrum can be independent. I wanted to focus on that… not on the possibility that we shared an autism gene. I did however, get up the courage to tell my sister that I thought I might be autistic… and so our conversation began. We were in that discovery phase - bringing up memories of being the quiet one, the one who never looked in another person’s eyes. The one who was bullied mercilessly for being odd (someday I will need to list them all just to see how many signals I was giving off…). There are literally hundreds of memories, hundreds of telling details, that all pointed to undiagnosed autism in me.
I finally wanted to be tested - out of curiosity mostly. I didn’t need support services, because I blended into the world… at least, I thought so.
Then my life turned upside down… losing a job promotion, marriage stress, pets dying, and just when I thought I could not handle anything more, my sister, my confidant, was killed. A gruesome death… and as someone who was in the medical field for almost 17 years I can honestly say my sister’s traumatic death was the worst I had seen.
I’m a very visual thinker. The visual ability has always been a gift, allowing me to be an artist. My house is art (remodeled everything from floors to the flow of the floor plan and decorated with my paintings and sculptures), and my deck is art, (not the usual square or rectangle living space), and my yard is art (flow beds and pathways and secluded thinking spaces), and even my Jeep has art on the hood….. But when my sister died, that visual ability was a liability - it tortured my soul. I saw the injuries, read her chart, got the accident report and put all the pieces together. I know how she was hit, how she tumbled, how every bone broke, how her neck snapped…. And I could see it in my mind – really see it. It played over and over…. And the result was PTSD.
My mind switched gears – from wanting to research my
autism more to wanting to heal my PTSD.
I was not a functioning adult any longer – my mind was cloudy and my
emotions raw. I seriously needed to
reboot, so I focused on a different path.
I needed to return from the brink of the event horizon before I was
pulled completely in.
Taking care of me included understanding PTSD – and so, another research focus began. I learned how to watch for the triggers, how to find my calm, how to deal with the crisis when they popped up out of nowhere. I’m getting better at it – not perfect, but working diligently to overcome the trauma. Then I came across new research showing that PTSD and autism share certain pathways in the brain… and everything started falling into place. Having autism actually makes one more likely to have PTSD after traumatic events. Maybe I wasn’t crazy after all.
“persons with autistic traits may be at elevated risk of posttraumatic stress disorder (PTSD) symptoms subsequent to trauma. (Roberts, 2015)”
“PTSD, once it has appeared, may exacerbate certain ASD symptoms” and “In addition, the unique characteristics of ASD may determine which events are experienced as particularly traumatic … and affect both the manifestation and severity of posttraumatic sequelae among diagnosed individuals”. (Haruvi-Lamdan N,, 2017)
And even after diagnosis (of both autism and PTSD), I still felt weird saying I was autistic because I am so very different than my son. We share so much, but Matt’s autism effects his daily life – every day. I didn’t see that in myself… until…
I came across the differences between male and female autistic characteristics. I read the following statement, and the light bulb started to glow over my head.
“ . . . Women who receive an ASC diagnosis later on in life may have spent years feeling different and attempting to minimize this difference, until their children receive a diagnosis and they recognize the symptoms within themselves (Holliday Willey 2015).
Camouflaging in certain settings may lead to the perception that individuals function well and do not experience any problems, even though those individuals still experience difficulties as a result of the interaction of their ASC and the context. For example, it is suggested that girls with ASC may mimic other socially successful individuals to give the impression that they too are socially successful, but when placed in unknown environments they are not prepared for, they struggle to socialize (Attwood 2006). This may reflect both a stronger motivation to mimic, and itself be the result of a stronger motivation to ‘systemize’ social behavior”
This is me. I have been reading behaviors of others my entire life. The result of mimicking is stress – and the need to be alone and quiet and away from people at the end of each day. I set aside time for that almost every day – time to de-stress from all the interactions of my day.
“By far the most consistent consequence of camouflaging described by respondents was exhaustion. Camouflaging was frequently described as being mentally, physically, and emotionally draining; requiring intensive concentration, self-control, and management of discomfort. The longer a camouflaging session continued, the harder it became to maintain the intended level of camouflaging. Many respondents reported needing time to recover after camouflaging, where they could be alone and release all of the behaviours they had been suppressing.”
I have always just assumed I was an introvert…. Or a hermit…. Destined to
become the crazy cat lady. In reality, it’s
a part of who I am –
“Time alone to recover
was identified as an important tool to help participants continue camouflaging
. . .“
And so I take that recovery time, so that I can function in the world around me.
“Camouflaging has also been proposed as an explanation for the missed or late diagnosis of females”
Maybe that’s why I never actually thought of myself as autistic… no one would ever suspect it, would they? I feel like I have hidden it from the world for 58 years. Of course, other people who are autistic have reacted differently when I told them (in confidence of course). The reply each and every time has been, “Well, duh!"
But being diagnosed does allow me to seek support if I
ever feel the need for it.
“ . . . (Maybe ) camouflaging so successfully . . . they may not need a diagnosis or related support. While this may seem plausible to those who view camouflaging as a successful, low-impact strategy, the significant difficulties and uncertainty reported by our participants tell us that people who camouflage still need to be able to access appropriate support”.
Maybe I will someday. I’ve been successful thus far at being in the world, and I have found my quiet time and art as my personal ways to de-stress, so I don’t think I will need those supports – but if one thing is certain in this world it is that nothing is certain - so it’s nice to have a back-up strategy.
This is my coming out to the world.
I am autistic.
I have PTSD.
Be kind in how you react to that.
Journal of Autism and Developmental Disorders, August 2017, Volume 47, Issue 8, pp 2519–2534 | https://link.springer.com/article/10.1007/s10803-017-3166-5
Psychol Trauma. 2017 Jul 20. doi: 10.1037/tra0000298. PTSD and Autism Spectrum Disorder: Co-morbidity, Gaps in Research, and Potential Shared Mechanisms. Haruvi-Lamdan N, Horesh D, Golan O. Psychol Trauma. 2017 Jul 20. doi: 10.1037/tra0000298
Honored on August 11, 2011".
Here's a story to warm the heart....it certainly warmed mine just writing it.
First - a bit of background. I wrote the story a while back about Matt meeting his
neighbor, Allen. The short version: Allen is very sociable and waved and said "Hi" to Matt
at every opportunity after he moved into the apartment complex last summer, but
Matt was having none of it for months, and totally ignored him and his
friendly advances. Allen was "too" sociable, I think, and Matt is
unaccustomed to such bold moves.
Then one day, I walked Matt over to the neighbors apartment, knocked on the door and introduced myself and Matt. I made a very short description of the communication difficulties and of his autism and then jumped into formal introductions. Matt shook his hand.... and now Matt knew him well enough to return the "Hi" and wave.
That was 8 months ago..... now waving is second nature, saying "hi" is routine..... and that leads us to the events of this past Wednesday.
Today when I picked up
Matt, Allen ran out his door to tell me that Matt had helped one of the
residents and came to him for help when an elderly woman stumbled on the
curb, fell and broke her leg - right there in the parking lot, and only
20 feet from Matt's apartment...
I stood there blank-faced while he described the crisis ... it wasn't registering....what?
So he told me the whole story again ... and I smiled from ear to ear as tears welled up in my eyes..... all I could think was OMG!
When Matt came to the door we hugged and then I asked Matt to tell me the whole story of what happened .... "Oh... Okay." as if it were really no big deal.
So here it is....
Wednesday, at 3pm, Matt went to his mailbox to get the mail. One of the elderly ladies that live in his complex fell and was sitting on the curb, crying for help. It was windy and freezing cold and she couldn't move - she had broken her leg and her lower arm. She was bleeding....
Matt heard her cries and went to help her. He told her "Stay put, don't get up, and I will get help!" Matt then went to Allen's apartment and knocked on the door (interject a hundred OMG! right here!). He told him there was a woman hurt and needing his help. Allen listened to Matt and went with him. He saw how bad she was hurt and went back to his apartment to call the ambulance and to get bandages. He came back quickly and held pressure on her deepest wound. Matt had stayed with her until Allen returned. Did I tell you she was bleeding? (And Matt stayed with her!)
I asked Matt if it were a lot of blood (Allen had to hold pressure after all) and Matt said - "a little blood". Today, even after all the snow and rain, there's still a big stain there..... soooooooo, hmmmmmm...... what qualifies as a "little"?
I asked Matt what happened next?
He said his friend was "doing his thing" and taking care of it, and because it was way too cold to stay outside, he went back to his apartment and watched the rest from his front window - until the ambulance came and took her to the hospital.
Matt calls me every night... and NEVER said a word about his heroic deed... not a single word. And every night I ask, "Anything new to tell me?" And yet....
Just trying to write this is making me cry..... why?
Because this was Matt..... MY Matt! The one who rarely speaks, who waves to his neighbors and can greet them with a "Hi" but only after an introduction - people have to pass the test first before words can be uttered.... this is Matt, my Matt, who would much rather move along, stay away from people in general, and never, ever, shows strangers the huge heart he possesses. This is my Matt.... my "moderate / Severely Autistic" Matt.
And yes, I see his heart every day... I see his compassion... but even I never would've believed Matt could find the courage to speak to a stranger, under difficult, stressful circumstances, and render a perfect-stranger aid - and there was blood, did I tell you there was blood? Matt is not one to be voluntarily be around blood.
Those tears I keep shedding on and off as I think about my son
today are of course, tears of pride and joy, but also of miraculous disbelief too
... because my mind is trying to put a new version of my son in my head.... a
version of a speaking young man who instead of anxiety rendering him
mute, finds the perfect words, does the perfect thing (by going to get
his neighbor, Allen....), a son who is so very much more capable then
even I ever dreamed he could be - and I REALLY pushed all those dream
limits over the last 31 years.... I maxed them out!
Or so I thought......until today.....
My son Matt was a hero for a perfect stranger. Sounds wonderful and amazing, right?
My perfect son, Matt. Absolutely perfect. Always teaching me a thing or two about possibility, dreams, and inner strength.
Thank you Matt.... keep pushing those limits - break them all....
Because Nothing.... NOTHING ... is impossible.
Liz Becker meets Temple Grandin!
Autism Act of Love Challenge
Matt and I took the challenge. I went first so he knew what to do. He didn't like the idea of eyes-closed to draw, so I leaned in as he was drawing and told him it was okay to open his eyes if he wanted to.... but he didn't.