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.
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.