Maybe I need to speak up for those in back of the room or those who, with all due respect to my fellow badasses, truly believe autism awareness is a fruitless effort.
Someone hand me a megaphone. Please.
A really big, obnoxious one that magnifies my voice for miles upon miles, from mountain top to mountain top, from sea to shining sea.
We are not … I repeat, for the 103,572,968th time since 2001, we are NOT. AWARE. ENOUGH. We are most certainly not aware enough and not demonstrating enough respect, empathy, or compassion to youth in transition and to adults. And we aren’t exercising a shred of common sense (and in some cases, common decency).
Why yes, I am bitter af today. Here’s the deal: you mess with my son, you’re messing with me, you’re messing with my global autism tribe of activists, advocates and their loved ones and I almost feel sorry for you.
Actually, I don’t.
It’s nearly the end of 2018, and in the past year and half, my family – specifically Christian – has experienced three (!) traumatizing incidents that quite frankly were:
- So easily preventable
Early last year, my son was judged by his label – not by the content of his character – by an alleged “leader” (I take this term seriously as a funeral, using it VERY loosely to describe this woman) within the largest grassroots autism organization in the world today. He refused to set foot in my office everyday thereafter because this woman commented about her fear of the possibility of an “outburst” in our office and *gasp* we can’t let that happen. Because you know, many of my field colleagues at the time who were personally affected by autism would not possibly understand if he actually did end up having a bad day, right? He could not help but internalize and perseverate on how she came to this conclusion without spending even ten minutes with him. What was he doing at the time she met him? Christian was searching dine out opportunities to raise money, shredding sensitive documents to clean up our file cabinet and assembling packets for fundraising teams. Hmph. Seems like a real troublemaker to me.
As many already know, I lasted only weeks afterwards because I refused to raise a single dime for an organization who refused to acknowledge their grave error and their terrible hypocrisy. I had, and still have, zero regret walking away from the position I once so desperately fought for and was so proud to hold. I many a time defended my place there, because though I knew there were some troubles within, I was committed to, as I always say, “be(ing) the change.” And there was a lot (and still is a lot) of good being done, with some damn good people left. That being said, I could not change what people refused to address. Karma has already been hard at work, as numbers have dwindled, sponsors have dropped, many longtime supporters have walked (pun somewhat intended, I suppose) away, and turnover is at an all time high. I truly do pray for positive change and that the powers that be rip off the blindfolds and pull the clogging cotton out of their ears.
Late into 2017, round two (actually, two and two and a half to be specific months later) took place. After buckling to the pressure of two post-secondary programs (one academic, one vocational), Christian accepted a position with an employer known as “one of the most disability-friendly” employers in the Greater Pittsburgh area. He started working in the deli and hot foods area. It was Christian’s goal post-graduation to secure a position working in food service and give back to his community by serving people within his hometown. At first, shifts seemed to be going smoothly, the hours were stable and the work was certainly not overbearing. His job coach from Goodwill, who is super yet unbelievably overloaded like most job coaches today (which is a problem in and of itself), provided Christian with constructive criticism and solid guidance. His therapist continued to counsel him weekly.
Enter workplace bullying.
A young man not much older than Christian started to rattle his cage during shift, something beyond what I’d call break room banter or male locker room banter if that makes more sense. This had nothing to do with Christian’s social-problem solving skills. Calling him a “thot” and criticizing his speed on the daily, Christian started reporting these incidents to both his deli manager and the store manager. Surprise, surprise – both managers would deflect back to the other one to address the matter. Christian’s job coach of course became involved. The person who bullied my son and ridiculed him kept his job in the deli, and it was Christian who was assigned to front end cashier. Yes, you are reading this correctly – the touted disability-friendly employer (I’m choking on my caffeine as I type, yinz, for real) by means of their actions promoted the behavior of the other young man rather than taking corrective action and a stand for the population they are known for embracing.
This jackass bullied someone with autism on site, and he got away with it. Plain and simple.
Now to everyone’s surprise, Christian seemed to enjoy the front-end work, despite the hustle and bustle of the checkout area. He interacted more with people he knew (as not everyone is served at the deli counter) and he’d often come home and say “You’ll never guess who I saw today!” He was not without struggle however, as he often pressured himself to move faster which would result in miscounts of the drawer and thus write-ups. That being said, management seemed committed to pushing him through tough moments, offering extra training and coaching as needed. Customers and colleagues alike frequently complimented his kindness and positive interactions with others, which of course does this mama’s over-caffeinated heart good.
Fast forward spring of this year, Christian was struggling with cashiering because he would be assigned to shifts where he would run the express line, which only fueled his self-doubt and dramatically increased his anxiety which resulted in – you guessed it – more drawer counts that were incorrect and thus more write-ups and soon suspensions. He also was craving meaningful relationships, so he befriended a few colleagues on social media, and would send messages now and then to try to strike up a conversation outside of the workplace. Not being a student who received the lessons within the Healthy Relationships Curriculum (shameless plug, so sue me because old habits die hard), he didn’t realize that people not replying to him may be ignoring him rather than not receiving his messages altogether. A female cashier, younger than Christian (yep, under 18) went to the manager and complained about his pursuit (which was only things like “hello, how are you, I like your nails because they look really neat”). Rather than speak to Chris and take a moment to explain what is socially acceptable and what may not be, he was slapped with a sexual harassment charge and told he was indefinitely suspended. Bawling his eyes out while stretched across his bed for three hours while my heart shattered in pieces that I swear you could see on my dining room floor, I was in disbelief as to what was happening. How in the world did we reach this point? Why wasn’t his coach consulted? What now? My head swirled.
Christian, being the strong-willed self-advocate he is, was already on the phone with his coach asking him to be accompanied when turning a letter of resignation, for time together to update his resume, grab applications and find a new job. He also called his counselor, who as always moved heaven and earth to arrange to see him later that evening.
Christian turned in his resignation that following day, pounded the pavement for a week thereafter and met with his coach more than once for coffee and collaboration. Soon he had two job offers, one from Walmart and one from Dollar General. He ended up taking the position at Dollar General as the shifts were more stable and it was within reasonable walking distance from home.
Of course, my own anxiety creeped in as he prepared for his next role.
Would they be accepting?
Would they be compassionate?
Would they give him extra training when needed?
My fears decreased the first night that I picked him up from a closing shift. The manager locked the door, and he fist bumped his colleague. Christian was actually smiling when he jumped into the car and said “it’s not bad at all! I just don’t like mopping, though.” Well, who DOES like mopping, unless your a FlyLady fan.
Weeks ago, Christian was offered an opportunity to return to food service working at a deli and catering business. Weighing pros and cons heavily, though he enjoyed his crew and the work at Dollar General, he felt compelled to take on a new role in the hopes of following his dream.
Friends shared his Facebook status with me (as I have shared, Christian and I are not Facebook friends and I respect his desire for privacy), which said “I can’t believe it! I’m going to be a chef! Can it get any better than this?!”
My heart was full. So full, and so grateful.
Christian was enjoying his initial shifts and training. He bought himself a set of Cuisinart knives, bought extra vegetables to perfect techniques, and watch YouTube videos to try to emulate master chefs. He was anxiously awaiting his first official event as a caterer.
A few times last week, I picked him up and he said, “Mom, I don’t know that I’m doing a good job. He always seems mad at me. He’s always telling me to hurry up. He’s always yelling at me.” Having worked as a hostess for a few months last year, I knew full well that kitchens are a pretty stressful place and that managers are often under the gun and react as such. I chalked it off to Christian’s lack of self-confidence and told him to continue to ask questions when needed, do his work, and continue to learn.
This afternoon, I’m typing with pain, strained muscles and tears in my eyes, all but physically kicking myself damn hard for not being an active listener.
Christian is in his bedroom with a sore thumb because he was given six stitches Thursday afternoon after an accident in the kitchen on-site. Anxiety-ridden and shaken after asking a question about “cutting gloves,” his boss angrily replied with a shriek across the room, “You don’t know what you are talking about! SHUT YOUR MOUTH!”Insult was physically and literally added to a bloody injury that looked like a Halloween decoration gone bad (that the site of nearly caused him to pass out at MedExpress, which I have never witnessed from Christian in 20 years of life).
Later that evening, throbbing, stinging and overly frustrated, Christian confronted his boss through a text message, telling him that he needed to get his act together, he needed to get his anger under control, and that he needed to stop yelling at him every day. The response?
“This is likely for the best. I wish you well in the pursuit of finding a better fit.”
Enter therapist. Enter job coach. Enter The Caffeinated Advocate who has Christian’s workers compensation papers in her briefcase, a whole lot of anger, loads of disappointment, mountains of frustration, and a number of confusing feelings somewhere in between. The business is owned by a man whose in-laws I have known since 1985 when I first bounced onto my hill off of a hill as a clueless 8 year old girl riding her pink Schwinn.
If I can’t trust a family business, a well-known disability-friendly employer, or a world-renowned autism organization … who can I trust? Who can WE trust?! Where is the love?!
AND … HOW CAN WE SAY AWARENESS IS NOT NEEDED?!
I would say “I’ll wait,” but you know what? I can’t wait. I don’t have the damn time. The world doesn’t have the damn time. Rates of autistic existence are increasing, and by 2021, this will be our norm.
At what point do we all become aware, act appropriately, show compassion, accept people as they are and demonstrate the respect that they should not have to earn from us?
This is why I need to write Imprisoned No More.
This is why I advocate for families to obtain critical care through my work at Achieving True Self.
This is why I blog and spread my message through any means I can.
This is why I speak.
THIS IS MY WHY.
Christian and this community … are my why. My former boss’s words are echoing inside my head, loudly pounding my eardrums. As a sibling to someone with autism and who has worked in the field for years fighting for their rights and respect, he often says “The world doesn’t care whether or not you have autism – but they should. Until then, we need to equip them, and everyone around them, with the right tools so somehow, we can meet in the middle.”
Mark my words, I will keep fighting with every bone in my body. We are not aware enough. It is my life’s mission to change that. We can … we will … we have to do better.