not enough

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{image is a photo of the Autism Acceptance magnet on the back of my car. I got it here.}

Please note: What follows is my best attempt to recall a fair amount of dialogue. While I’m pretty confident in my memory thereof, it’s certainly fallible. 

On the way back to work from Katie’s graduation yesterday, I stopped into the gas station (that’s petrol for you folks across the pond) to fill up. When I got out of the car and got started, the attendant came out and stood behind my car. “That’s weird,” he said.

I turned around to see to what it was that he was referring and was surprised when I followed his gaze to the Autism Acceptance magnet on the back of my car. I wondered if perhaps I’d misunderstood, so I asked, “What’s weird?”

“That,” he said, now pointing to the magnet. “I don’t understand that,” he added.

“What about it don’t you understand?” I asked.

He read it aloud. “Autism acceptance,” then paused as if waiting for something. “You’re accepting autism?” he asked. “For who?”

“For my beautiful daughter,” I said with a smile. “Because autism is a big part of her identity and I want her to feel accepted for every part of who she is and how she views the world.”

“Oh,” he said, “so it’s for a person, not for accepting autism?”

“Well,” I said, “it’s both, really. I want her to know that she is accepted and celebrated as she is and also that autism is accepted as part of the human experience – the challenges, the rewards, and everything in between.”

“That’s weird,” he said again. He was still staring at the magnet as though some alternate meaning might reveal itself if he looked hard enough. I waited, sensing a familiar need for processing time.

“I have Asperger’s,” he said finally. “And I .. well .. ” his voice trailed off as he pointed again toward the magnet. “I …. no.” He continued after a breath, saying, “I heard once about Asperger’s pride.” He said it as though the very idea of such a thing should clearly strike me as preposterous.

“I have a lot of friends who have Asperger’s and other forms of autism,” I said. “It isn’t easy. Life can be very difficult, particularly for those with more significant challenges, like my non speaking friends who type to communicate. But they take very real pride in who they are. As difficult as life can be for them, they have created a pretty wonderful community around their autistic identity.”

“I can’t see that,” he said.

“I’m so sorry,” I responded, wishing that somehow I could, right then and there, introduce him to one or two or twenty-seven of my friends.

“I have a master’s degree,” he said, “and I’ve been working at this gas station for five years now. And I’m not even a manager. Just because I rub people the wrong way.”

“I get it,” I said with a sigh. “Underemployment is a HUGE issue for adults on the spectrum. But I have to say, even if the progress feels glacial, I really do believe that we are moving in the right direction. That as a society, we are learning to see people in their entirety, to value different skills, different perspectives. That’s part of why I have that magnet on my car. But I know it’s not happening fast enough and I understand why you feel the way you do. I really do.”

He shook his head as if to reset it, then walked away.

In his absence, I evened out my purchase, then returned the nozzle to the pump and closed my gas cap. The man from whom I’d bought a Homeless Voice Street News on the way in gave me a toothy grin and waved enthusiastically from across the parking lot. I returned his smile and waved back, then turned to look for the attendant before getting back into my car.

I wanted to tell him that I liked talking to him. That he hadn’t rubbed me the wrong way. That there’s a lot to be proud of – even in disability, especially when many of that disability’s most disabling aspects are caused or exacerbated by your surroundings, not you. That I hope he can someday find a job that interests, challenges and satisfies him.

But it was too late. He had already disappeared into his one-man office and closed the door behind him. I reluctantly got into my car and drove away.

We’re headed in the right direction.

But the pace of progress is glacial.

And for the homeless man selling Street news to survive and the gas station attendant with the master’s degree who isn’t even a manager, it’s not nearly enough.

.

Ed note: I in no way, shape, nor form mean to demean the gentleman’s work as a gas station attendant, nor to devalue the job itself. Rather, I relayed and then quoted his feelings about his own job as it relates to his education. 

31 thoughts on “not enough

  1. You’re right, it’s a start but it’s not nearly enough. It’s damn frustrating but even baby steps are progress.l

    Love you,
    Mom

  2. I feel sad for him. I’m not sure I have the words to explain, but my girls and I wear our aspieness with pride. We are special, we are us. It’s tough at times (sometimes a lot of the time) but we are still prouder of our skill sets than we are disappointed in our deficits.
    Where we live there is a lot of acceptance, maybe not enough knowledge in the schools, but they are certainly doing their best and willing to listen and try.

    My bet is his discussion with you will be mulled over and make a difference to that mans life.

  3. Your thoughts and comments are right on. The world needs to accept and appreciate and value everyone. We parents and caregivers are the start in bridging society with people who are different.

  4. I’m sure he will process what you said in his own way and time. You likely “made” his day, week, month, year …

  5. I was in Boston yesterday testifying at the State House on a proposed bill to help disabled parents and how they are treated during custody issues both through DCF and the family court system. There were quite a few members of the autistic community there and through my terror at the thought of speaking in public, I was thinking that you should have been there.
    If you have a chance look up the proposed bill H1370

  6. I am glad your magnet started the dialog. Each positive seed put out there may grow, out of our sight. This post reminded me about sharing the Gospel, the good news….is that each person is unique, worthwhile, should be celebrated and loved because God loves us.

  7. I haven’t cried over my sons Aspergers DX in a long time but this has me balling at my desk at work. This is my greatest fear for my son. I fear he will not accept himself. He spends a lot of time saying he is sorry after those “teachable moments” that we still have daily at the age of 10. I don’t want him to be sorry but I do need him to learn how not to “rub people the wrong way” so that doors are not shut for him in the future.

    • There’s learning to “not rub people the wrong way” and then there’s hiding who he is. It is imperative that he not do the latter.

  8. I wonder if you might be able to go back to that gas station and give him some links to some blogs written by autistic people. Maybe some links to their Facebook pages. It is never too late. You can still tell him you enjoyed talking to him and that he did not rub you the wrong way. I have a feeling if you reach out your hand with some ways to make some connections that he will take hold. He might not but as your father says, “It does not cost a thing to be nice”. Just a thought.

  9. To think, it all started with that magnet. So much can come from one proud magnet we display on our car. I know you planted a seed in that young man’s mind. I didn’t feel that you were belittling the job he has. I just think that it’s a shame that this young man with the level of education he has worked hard for and achieved, can’t be working in his field of expertise. We need more people like you in this world, Jess. I believe this young man’s life has been/will be changed all because that’s where you happened to stop for gas and he happened to notice your magnet. It all started with that magnet.

    • please forgive me as i don’t mean to call you out individually **AT ALL** but i find it really telling that so many people have called him a “young man” (there have been a number of other people that have referred to him the same way on FB) when i gave no clues to his age. i’m 44 and i guessed he was around my age. i wonder if it doesn’t speak a bit to society’s insidious and deep seated infantalization of those on the spectrum. food for thought. xo

      • You’re right. I just made the assumption that he was in his 20’s or so. I’m guilty of that because I’m horrible at guessing ages. I had no clue we were the same age. I’ve always described you as a young lady in your early 30’s when I share your FB posts because that’s how I see you. Thank you for reminding me to take in the whole picture, not just focus on one thing. You have planted another seed with your post. One I know we will all reap different benefits from. Thanks for giving me this window to be a bystander where I have learned so much from the view. 🙂

  10. I wish I could talk to him. I have a graduate education, too, and I live in my mini-van while I write and work toward the day my writing supports me instead of living on SSI. I get it. But there’s so much more to Autistic me than not being able to keep mainstream employment. So much more. I have lots of challenges and struggles but also lots of beauty in my life, both the result of having an autistic brain.

  11. My brother has Aspergers. Recently my mom passed away very suddenly and very unexpectedly. My brother is 22 and he lacks the skill set that is necessary to be independent in our world. He is an amazing person. He is brave, and pure, loyal, brilliant, loving and the most amazing person I have ever known. He does not have a mean bone in his body. He has to work at it to be able to insult somebody. It’s just not natural to him. He doesn’t really have many friends where we live, Las Vegas. However online he plays this game that he loves and he has made connections with a bunch of people who play together every night. With my mom passing, I am terrified for him. I am terrified he will be unwilling to learn the skills he needs to. I am constantly terrified of the employment field judging him, and identifying him as “Aspergers” instead of Will, my brother. I am so, so frightened that he won’t be able to get to a place in his life where he is fully employed and more importantly where he is truly happy. I haven’t gotten any reading material to help him out in any way that I can, but I plan to. I’m only 23, and until now I have always just had the role of being his sister. With my mother gone, I’m afraid he’ll slip through the cracks. I’m afraid no one will help guide him, or be tolerant enough to see past his social quirks. My dad is bipolar and struggling right now. So I’m really stepping it up while dealing with my grief. I just wanted to say thank you. Your blog and website helps me feel a connection and a deep sense of hope. It makes me grateful instead of resentful. Because right now it would be so much easier to be negative and wallow in my own pain. In a way you keep me grounded. You have an inner strength that is empowering. So although you don’t know me, & I don’t know you, I just wanted to let you know that sometimes it is your words I reflect upon that help me deal with my day and get through it. I am so grateful that you have the courage to share what you do, and let us look in on your life. So once again thank you.♡

    • oh, lea marie,

      writing back to you through the tears streaming down my face —

      please know how humbled i am by your words and how grateful i am for, well, all of it.

      you’re so blessed to have one another and i have no doubt that with the obvious love and respect you have for him, you will find your way together.

      much love — and strength — to you both.

    • Lea Marie – sending hugs your way, and also a link that might be helpful. It’s by siblings, one autistic, one not – mid/late 20 year olds. Maybe you can find some support/info, etc. http://www.autismspectrumexplained.com/

      There’s also a “contact us” page, so you can ask questions, and they have a Facebook page as well. Take care!

  12. Dear Mom:

    I met you this past April in Presquile Isle, ME and was deeply impressed with your spirit, enthusiasm, and devotion.
    Although he went into his cubicle and closed the door. I do not believe that the door was completely closed. If you look closely, you may find a space that your big toe will fit into, thus preventing him from excluding you from his life.
    Once you see that, it becomes your responsibility to continue to go to this particular gas station repeatedly until he opens the door and allows you into his life.
    This is the gift from God that you have been blessed with! Help Him!!! It is not too late. Go Back. So many times in our lives, we ask what if?
    I know that I am asking a great deal of you, but I know from experience that if we go back after an encounter like this, we can sometimes save a life.
    God bless you for all you do to help our rainbow children!

    Garrett

  13. Societal change comes from within, as well. Thanks so much for this article (and all you write)! Your anecdote illustrates well the negative self-perception that can come with diagnosis, when the message received sounds like this: “You’ve been having trouble your whole life. And it’s because of who you are! Here’s proof.”

    Add to the mix pathology-driven diagnosis criteria maligning the person’s behavior and – without distinction – personality traits, and technical websites explaining with authority how wrong and deficient people “with autism” are. Perhaps add also some dehumanization from therapists or school aides forgetting neutrality and instead reinforcing the person’s sole accountability for the stigma they endure. Chances are that self-loathing will come along… and the logic of this negative message can be strong when it’s coupled with a life-long feeling of inadequacy.

    I wholeheartedly agree with the seed metaphor: placing the simple idea that perhaps the fault is not entirely within, that responsibility for acceptance is a shared endeavor. I have seen this seed grow in our own adult community here. I have tried to plant it myself a few times, gently and tentatively. There is so much beauty in seeing marginalized people start to understand that neurodivergence is one thing, and self-worth quite another. That they can be appreciated and valued for who they are, and not *despite* what they are not.

    I have thread this path. Because of a simple, positive idea, gentle sharing and discussion by and with other autistics and allies, I have reworked my entire view on life, and shame has dwindled. I have seen new friends who used to be ashamed and self-blaming for their history of discrimination start to see things in a different light, become empowered, and start putting forth positive ideas themselves in conversations in person and online, growing in self-knowledge for both positive and challenging aspects of their experience, and starting to say with confidence: “I am an autistic human being, and a pretty cool one at that. Some of my difficulties are the same as yours, and some different, and it’s all okay, let’s talk about that. I have strengths and beauties, too. What are yours?”

    Friendship is a wondrous thing. And sometimes a few simple, kind words and positive ideas from a new acquaintance is in itself an act of benevolent friendship that can change everything in a person’s life. Kudos, Jess.

  14. What a pity. Hopefully you can see him again and tell him those things.

    I understand his frustration, from a slightly different angle. I’ve had 6 jobs in 7 years, all entry level positions that never satisfied me or offered much in the way of upward movement, even when I asked about it. But even the highest levels in these jobs would never be my cup of tea, nor match my particular set of intellectual abilities and interests. I try to find solace in my hobbies and in reading, where I can indulge my interests without worrying if they’ll help me pay the bills.

    Progress is progress, but I do hope it speeds up. Thanks for the excellent post.

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