What if Autism isn’t the Problem?

One time my little girls were on a playground and the oldest decided to make an imaginary birthday cake.  She was so serious about it, so thoughtful about each decoration.  It was touching at first, but then things got painful when she took her prized “cake,” carried it to a ten-year-old boy, and said, “Here’s a birthday cake I made for you.”

He totally ignored her, and it broke my heart.

It’s hard to watch your kids figure out that the world isn’t always a friendly place, but it’s part of life.  Eventually, my daughter will develop an acute ability to pick up on social cues that tell her who the safe, friendly, and kind people are.  But what if she never did develop those abilities?  What if she couldn’t?

My friend Rachel Wilhelm talks about what it’s like to raise a wonderful, creative boy who grows into a young man and discovers he’s a part of the world that doesn’t get him – a world he doesn’t always get.  As a part of Autism Awareness Month, take a moment to peek into her son’s life and consider how you might need to rethink the way you live yours.

____________________

Rachel Wilhelm
Rachel Wilhelm

Before we moved to Minnesota, my 18-year-old son had a job at a pizza place answering phones and working the cash register. He would come home every shift proud that he was earning money and competently doing his work. He was living life in the real world, working with and tolerating people, even though his Asperger’s diagnosis made this difficult for him. Beating these kinds of odds in his reality was a large victory.

When we moved to the frozen tundra of Minneapolis, my son was reluctant to leave his workplace, but hopeful that since he had experience he would easily find a job and do well. He did, in fact, easily find a job at another pizza place. It was a whirlwind of events in which he was hired almost on the spot because of short staffing, and his training was quick. First he was on the phones, and then he was doing everything else, all in the course of a couple of weeks. He would come home exhausted, but hopeful.

After about a month, he called me to pick him up early from one of his shifts. “Why are you coming home early?” I asked.

“Well, I think I just did all the work so quickly that there’s none left now. I guess I did a good job.” When I arrived, he came out of the building with a strange look on his face. He sat in the passenger’s seat, heaved a huge sigh, doubled over, and wept.

“I don’t understand what happened,” he whispered, “I thought I was doing fine.”

“What happened?” I said, alarmed, worried.

“I don’t know. The shift manager just told me that I was not meant to work in the food industry and I can’t multi-task. She says I just stand there waiting to be told what to do, and she can’t take it anymore. I can’t go back. She yelled at me. She told me to clock out and go home.”

Who’s Got the Disability?

Immediately I knew what happened. Because the pizza place was short staffed, they were training my son to do everything, and he couldn’t keep up.

My son has short-term memory issues that stem from his Asperger’s diagnosis. So I’m sure he wasn’t recalling all of his tasks quickly enough and was freezing up when being told to move from one activity to another. He also doesn’t understand jokes or sarcasm very well either, so he probably wasn’t picking up on his co-workers’ verbal or body language until it was extremely apparent.

It must have been the last straw for the manager to send my son home early and then overhear him say it was because he was doing such a good job. So she let him have it because she couldn’t take it anymore.

I know my son well, and I’ve got a good idea what was running through his mind as he sat there in the passenger’s seat: Why do I have to strive so hard to be “normal”? Aren’t “normal” people the most intolerable of all?

I mean, think about it. It’s not like he was yelling. And to top it off, just because my son didn’t pick up on all the social cues, a “normal” person got to break the very rules they wanted him to live by. Where is the draw to be like them? And who made these rules anyway?

The next day my son went in for his shift. The manager told him that she thought he quit, and they already filled his time slots with other employees. He walked home.

Over and over again I have read of these kinds of things happening to people with a high-functioning autism diagnosis. Because they look “normal” everyone assumes they are. But it’s like expecting high school maturity out of a fifth grader who happens to be too tall for his age. That expectation, that lack of understanding is what brings out the worst in people who interact with young men like my son. But instead of seeing their own character deficits, they assume it’s okay for them to act inappropriately towards him because they can’t take it anymore. The irony.

Maybe “Normal” Isn’t a Good Thing

About a year ago I was at a grocery store. An older employee zoomed in between a customer and an end cap and almost knocked the customer over. She railed after him yelling, “Excuse me! What is your problem?”

The employee just kept going, completely unaware of what happened. He was, without question, a man with Asperger’s.

The woman couldn’t let it go. She was very offended and approached a cashier to tell him what happened. She was pointing in the direction of the offending employee while yelling, wide-eyed, and crazy. I stepped up to her and quietly said, “Excuse me.”

“Yes?” she said, turning to me (the cashier was clearly relieved).

“I think he has autism. He didn’t realize what he had done. He doesn’t get social norms, so he had no idea you were upset at him and didn’t hear you. I have a son who has autism and I saw what happened. And I guarantee you, it wasn’t intentional.”

Her face fell. She clasped her heart and said, “I had no idea. I’m so sorry. That makes all the sense in the world. Thank you for telling me this.”

I admire this woman’s humility. Instead of being embarrassed and offended by me, she took the criticism and saw it as education. So many more moments like this could happen if people were aware, or if the ones who are aware would speak up.

People with Asperger’s or high functioning autism would probably agree that acting neurotypical (or “normal”) is their goal to function in this world. But let’s consider the confusing signals we send when people with autism test our patience, and we respond by ignoring the very social norms that are supposedly so important to us.

If Rachel’s story spoke to you, consider sharing this link on social media with the hashtag #AutismAwareness.  

13 Comments

  1. Thank you for this story about your son. I wish “normal” people would have more heart and not be so quick to pass judgement. I have a 13 yr. old grandson with asbergers that I am hoping will have an easier time of it when he gets to the age of going indepedent. I do worry though, that things won’t change tremendously by then. All we can do is “be there” for him should things get rough.

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  2. K. Clayton

    In case you don’t know, Byerly’s in St Louis Park hires people with disabilities, and has had several high functioning people with obvious disabilities (down’s, autism, etc) doing things like packing groceries, etc. Thanks for sharing your experience.

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  3. My son had a very similar experience also working in food service. I received a phone call 2 hrs before the end of his shift he was in full overload meltdown and crying into the phone. He said the manager told him he could leave. He was never booked for another shift.

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  4. Dianne: Your fear is real, and I really understand it. I sincerely hope awareness is boosted by the time your grandson hits the age of independence. The world is a tough place with hard lessons. Thanks for reading and your heart for this cause.

    K. Clayton: Thanks so much for suggesting that! The good news is that my son has a job at Lund’s, which is the same company! I was told after the fact by someone that they are fantastic to work for when you have any kind of special need. The openness of the hiring manager when my son was interviewed was astounding to me. He confessed that he had trouble managing more than two tasks in succession, and the manager assured him that his position would be a good fit. So far so good! He is loving the job as much as he loved the one he left when we moved. I am so so glad. Thanks for putting this info out there. Byerly’s and Lund’s are exemplary companies, and commend them.

    Kim: I am SO sorry to hear this about your son. This is exactly why my son was behind my writing of this article. He risked being vulnerable to back this article up, and I think other Aspergian/ASD people will find comfort and support the more the word spreads. A few years ago I read this book called Asperger’s Syndrome and Employment. Do you know what it said? It said some ridiculous number—80-90% (I’m guessing because I can’t find the book on hand) of Aspergians can’t keep a job. My jaw dropped when I saw that number. I mean, actually, I started weeping. Those are horrendous odds. It has to end. This can’t keep happening. These are beautiful people with beautiful minds who are worth just as much as anyone else. They have incredible dignity. They are gentle souls. And they are capable of good work if someone were willing to train them or work with them and have some grace. I could go on, Kim, about how much I understand your feeling of helplessness too, on getting that phone call from your son. –All those sleepless nights you have thinking about how he’s going to make it after you are gone, or what his prospects are next. Parents of special needs children have to think about so much more than they even realize because they live it—almost without thinking. You pick up, you support your kid, you move on. Anyway, I get it Kim. I really, really get it. Thanks for reading.

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  5. I was in the field before being a business owner and I always wanted to welcome people with disabilities into our company. Some problems from an employer’s perspective can be this ( from our experience) : given the nature of the business, only the dishwasher position was available. We tried with four different individuals, and the reason it wasn’t working was first because the agencies were sending individuals with too low of a set of skills (setting up for failure) and because it is paid by the hour, a difficult expense for a small company (when it takes three hours to complete a one hour task). We hated having to let go of anyone. One of the individual’s parents took the time to thank us because we paid their son the two weeks he had worked! I can only imagine what they must feel. Probably something like you do. Let’s make room for everyone, as much as we can and really have as little jugment as possible on either side (work place, person, care takers, family, etc.) as we never know the stories. All the best.

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  6. This piece is a great reminder that we all need to be more aware of how we communicate. Verbal communication skills are important to develop and practice. We think we are clear, but even to other neurotypicals, we probably aren’t as clear as we think we are! I highly recommend the book “Now we are speaking” by Gary Chapman.

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  7. Christine Olson

    Great article, good thing my makeup wasn’t on yet. Blessings for you and your son. Concerning hiring the disabled please check out “No Greatness without Goodness” by Randy Lewis. This should be a must read for business owners and managers.

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  8. Michelle Therese

    “…80-90% (I’m guessing because I can’t find the book on hand) of Aspergians can’t keep a job.”

    Because “normal” people can’t behave normal towards other people, that’s why! I’m not agreeing with those numbers, just saying what I say to my husband all of the time: I live with PTSD/Major Depression/Anxiety disorder, a lovely cocktail of living hell at the worst of times. I’ve told my husband again and again 99% of the times that I go into debilitating panic attacks with the usual follow on of deep depression, paranoia, agoraphobia, and a collapse of my physical health… it is because a “normal” / “healthy” person behaved like a depraved jerk and mentally attacked me with their horrible behavior. I could function probably 99% in life, hold down a job, be out in public, etc etc etc if the so-called “normal” people around me BEHAVED like decent human beings instead of the relentless harassment and bullying they dish out when faced with the *slightest* difference coming from another person. Tell me, please, exactly *who* is the one with social impairment? Me or the “normal” person screaming in a raging temper in my face, or calling me “crazy”, or ganging up on me with X other co-workers, classmates, whatever … ?? Uh huh.

    I apologize to all of the actually good people out there, but our society is NOT a nice place nor is it healthy or normal or in any way a positive environment where actual normal good people can grow and expand and thrive ~ let alone anyone like me or those with Aspergers or ASD!!! (Good people don’t stick out, don’t get in the faces of others, etc etc and rarely speak up or do anything that makes you startled, because they are, uh, good decent folk ~ so our society is fraught with a constant nastiness that is like a smoke screen that hides the good folk. The squeaky wheels are the ones seen and heard!)

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    1. I had a similar situation recently. I was ‘let go’ aka ‘terminated’ from my job at Target on Christmas Eve as a cart attendant.

      I’m a 31-year-old man, and I have autism, OCD (Obsessive Compulsive Disorder), mild bipolar disorder that I take medication to help minimize, etc. I was hired as a cart attendant at Target a little over 2 weeks ago in early December, a job I was hired at via a special needs vocational program.

      What happened was, my higher-ups apparently felt I wasn’t moving fast enough, and I have to be VERY fast on the holidays, especially on Christmas Eve.

      Also, I’m required to clean the restrooms, both the men’s room AND the women’s room, every hour on the half hour, such as 1:30, 2:30, 3:30, etc. A few women made some complaints recently on different days that I was going in the women’s room so I could clean everything, make sure there was no stray debris on the floor, make sure the floor was clean and didn’t need to be swept and/or mopped, and also make sure all the toilets had toilet paper on the dispensers, etc. The reason the women complained is, I was supposed to wait until AFTER everyone was gone and the restroom was empty, and put up a sign telling no one to enter until I was done cleaning, and that goes for the men’s room as well, even though I’m a man myself. I thought that by saying, “Maintenance, cleaning”, that would be enough to let them know a man was in there to clean. I forgot that I was supposed to wait until EVERYONE was gone in BOTH restrooms, and put up a sign not to enter. So, naturally, some of the women claimed they were uncomfortable with them using the bathroom with a man in there cleaning. Yes, this was a mistake on my end, and yes, I probably should have used better judgment and had the common sense to know to wait until both restrooms are empty before cleaning them, but this still wasn’t a fire-able mistake in my eyes.

      Also, the higher-ups felt my performance with moving at a relatively fast pace on the holidays was insufficient, and an insufficient number of carts were being brought in at once in order to keep the cart doors as close to full as possible for customers. I can only carry about 7-8 carts at a time with my bare hands. Employees need to use a machine in order to get about 25-30 carts to bring in, and I wasn’t trained or taught how to use that machine, despite that I asked for someone to teach me how to use the cart machine on several occasions, to no avail.

      Plus my higher-ups felt I was taking too many breaks. I got the hours mixed up, and I thought if I had a 5-hour shift, 5 hours allows me 2 breaks, 1 for 15 minutes and 1 half-hour meal break. It turns out that any shift under 6 hours only allows employees ONE 15-minute break, not 15 minutes AND a half-hour meal break, unless it’s 6 hours or more. So, by me taking 2 breaks at a 4 or 5-hour shift, they said I was exceeding the number of breaks allowed. It was an honest mistake and a simple misunderstanding, which could have easily been corrected without terminating me.

      I also happen to like soft cushioned toilet seats, the kind people’s grandmas had back in the day. I have one of those in my apartment, but mine was getting old and barely usable, after having it for almost 2 years. They happen to sell those at Target. I had my service provider agent who works for Medicaid go to Target on Wednesday, December 23 with me, and we showed up my job about 15 minutes early, where I bought a new soft cushioned toilet seat that happened to have the right size and the right shape for the toilet in my bathroom at my apartment, since Home Depot was out of those in stock on Wednesday, December 23, the day before Christmas Eve. My aide who works for Medicaid was given a key to my apartment, and I bought the soft toilet seat while using my 10% discount card that I was given as an employee, and then handed it to my aide so he could go to my apartment with his key, install the toilet seat, screw it in properly as a friendly courtesy, and then lock up on his way out, and drop me off at Target while we were there in order to save me some time and get to work 15 minutes early, basically killing 2 birds with one stone. My higher-ups must have seen me buy the toilet seat on Wednesday, December 23, and then hand it to my aide, and then ASSUMED I was buying the seat for my aide, even though the seat was bought for MYSELF, not for someone else, and expecting a reimbursement from my aide afterwards, and they apparently misunderstood. Buying an item for someone else while using an employee 10% discount card, and then expecting a reimbursement afterwards would normally be a violation of company policy, which they used as yet another thing against me and another reason to terminate me. but the item was NOT bought for someone else. It was bought for ME, and I was NOT expecting a reimbursement afterwards, but they apparently saw me hand it to my aide who works for Medicaid so he could drop me off at work and then go back to my apartment and install the seat and then lock up on his way out, and it was a misunderstanding on their end. In other words, they basically found me guilty without even bothering to ask me about the occurrence. I thought it was innocent until proven guilty when there is an accusation. Even accused murderers and accused child molesters are innocent until proven guilty in the eyes of the law, which is why we have trials.

      At the end, they said they really like me, BUT they had to let me go, but I’m still welcome to go into Target to shop anytime any day, but as a customer now, not as an employee anymore, which I don’t plan on doing anytime soon for a while. Since I don’t drive due to my disability, it’s worth the slightly longer walk to Publix.

      I worked very hard and I did my best. I even dealt with a hostile customer who was verbally disrespectful to me, and I STILL remained professional, didn’t retaliate, and handled the situation very well. Yet was ‘let go’ less than 3 hours into what was supposed to be my 8.5 hour shift without even getting to complete my shift first, AND on Christmas Eve of all days.

      I wasn’t even given some kind of a verbal warning in advance, or a letter of notice regarding prior complaints. I was immediately brought in the ETL’s office and then told to go less than 3 hours into what was supposed to be an 8.5 hour shift today, without even being allowed to complete my shift, AND on Christmas Eve no less.

      Another thing. The first time I applied to work at Target, I was actually turned DOWN the first time, and they were very uncooperative. The second time around, when I came back with my job coach from a special needs vocational training program, he provided actual documentation and evidence that even though I have a disability, I’m actually eligible to work and had a ticket to work, and the second time around, they changed their tune REAL quick and hired me, but reluctantly so, because I guess they figured they had no choice but to hire me in order to avoid a possible discrimination suit. So, I believe they decided to hire me to fire me later. They hired someone with a disability knowing I have certain limitations, and hired me during the Christmas holidays, which is one of the busiest times of the year, gave me ridiculously long hours working 8.5 hours a day, 3 days in a row back to back, and I’m convinced that they did not provide me with proper training from management on purpose, knowing full well I would mess up at some point, just so they could find an excuse to fire me barely 2 weeks later. I believe they WANTED to set me up for failure, since they didn’t want to hire me right from the very beginning, but the only reason they hired me in the end is, they realized they had no choice at that point.

      Target hiring me solely because they wanted a gold star for having someone with a disability working for them, and then showing me the door before I can even get used to the new job is an absolute disgrace. I wish I had a word for what that makes Target because disgusting and unjust does not quite describe the character it takes to treat people with special needs like they are lesser. I will not be shopping at Target anytime soon for quite a while.

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  9. Thank you for this post. I work with Autistic children every day and I often wonder what their lives will be like when the enter the “real world”. These are some of the most caring, compassionate kids and deserve to be treated the same!

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  10. […] about her son’s struggle to live as an adult with Asperger’s. The response on social media to her touching essay was overwhelming. So recognize how interesting other people’s lives are, and you’re more […]

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  11. […] What if Autism Isn’t the Problem? (guest post by Rachel Wilhelm) […]

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  12. I was ‘let go’ aka ‘terminated’ from my job at Target on Christmas Eve as a cart attendant.

    I’m a 31-year-old man, and I have autism, OCD (Obsessive Compulsive Disorder), mild bipolar disorder that I take medication to help minimize, etc. I was hired as a cart attendant at Target a little over 2 weeks ago in early December, a job I was hired at via a special needs vocational program.

    What happened was, my higher-ups apparently felt I wasn’t moving fast enough, and I have to be VERY fast on the holidays, especially on Christmas Eve.

    Also, I’m required to clean the restrooms, both the men’s room AND the women’s room, every hour on the half hour, such as 1:30, 2:30, 3:30, etc. A few women made some complaints recently on different days that I was going in the women’s room so I could clean everything, make sure there was no stray debris on the floor, make sure the floor was clean and didn’t need to be swept and/or mopped, and also make sure all the toilets had toilet paper on the dispensers, etc. The reason the women complained is, I was supposed to wait until AFTER everyone was gone and the restroom was empty, and put up a sign telling no one to enter until I was done cleaning, and that goes for the men’s room as well, even though I’m a man myself. I thought that by saying, “Maintenance, cleaning”, that would be enough to let them know a man was in there to clean. I forgot that I was supposed to wait until EVERYONE was gone in BOTH restrooms, and put up a sign not to enter. So, naturally, some of the women claimed they were uncomfortable with them using the bathroom with a man in there cleaning. Yes, this was a mistake on my end, and yes, I probably should have used better judgment and had the common sense to know to wait until both restrooms are empty before cleaning them, but this still wasn’t a fire-able mistake in my eyes.

    Also, the higher-ups felt my performance with moving at a relatively fast pace on the holidays was insufficient, and an insufficient number of carts were being brought in at once in order to keep the cart doors as close to full as possible for customers. I can only carry about 7-8 carts at a time with my bare hands. Employees need to use a machine in order to get about 25-30 carts to bring in, and I wasn’t trained or taught how to use that machine, despite that I asked for someone to teach me how to use the cart machine on several occasions, to no avail.

    Plus my higher-ups felt I was taking too many breaks. I got the hours mixed up, and I thought if I had a 5-hour shift, 5 hours allows me 2 breaks, 1 for 15 minutes and 1 half-hour meal break. It turns out that any shift under 6 hours only allows employees ONE 15-minute break, not 15 minutes AND a half-hour meal break, unless it’s 6 hours or more. So, by me taking 2 breaks at a 4 or 5-hour shift, they said I was exceeding the number of breaks allowed. It was an honest mistake and a simple misunderstanding, which could have easily been corrected without terminating me.

    I also happen to like soft cushioned toilet seats, the kind people’s grandmas had back in the day. I have one of those in my apartment, but mine was getting old and barely usable, after having it for almost 2 years. They happen to sell those at Target. I had my service provider agent who works for Medicaid go to Target on Wednesday, December 23 with me, and we showed up my job about 15 minutes early, where I bought a new soft cushioned toilet seat that happened to have the right size and the right shape for the toilet in my bathroom at my apartment, since Home Depot was out of those in stock on Wednesday, December 23, the day before Christmas Eve. My aide who works for Medicaid was given a key to my apartment, and I bought the soft toilet seat while using my 10% discount card that I was given as an employee, and then handed it to my aide so he could go to my apartment with his key, install the toilet seat, screw it in properly as a friendly courtesy, and then lock up on his way out, and drop me off at Target while we were there in order to save me some time and get to work 15 minutes early, basically killing 2 birds with one stone. My higher-ups must have seen me buy the toilet seat on Wednesday, December 23, and then hand it to my aide, and then ASSUMED I was buying the seat for my aide, even though the seat was bought for MYSELF, not for someone else, and expecting a reimbursement from my aide afterwards, and they apparently misunderstood. Buying an item for someone else while using an employee 10% discount card, and then expecting a reimbursement afterwards would normally be a violation of company policy, which they used as yet another thing against me and another reason to terminate me. but the item was NOT bought for someone else. It was bought for ME, and I was NOT expecting a reimbursement afterwards, but they apparently saw me hand it to my aide who works for Medicaid so he could drop me off at work and then go back to my apartment and install the seat and then lock up on his way out, and it was a misunderstanding on their end. In other words, they basically found me guilty without even bothering to ask me about the occurrence. I thought it was innocent until proven guilty when there is an accusation. Even accused murderers and accused child molesters are innocent until proven guilty in the eyes of the law, which is why we have trials.

    At the end, they said they really like me, BUT they had to let me go, but I’m still welcome to go into Target to shop anytime any day, but as a customer now, not as an employee anymore, which I don’t plan on doing anytime soon for a while. Since I don’t drive due to my disability, it’s worth the slightly longer walk to Publix.

    I worked very hard and I did my best. I even dealt with a hostile customer who was verbally disrespectful to me, and I STILL remained professional, didn’t retaliate, and handled the situation very well. Yet was ‘let go’ less than 3 hours into what was supposed to be my 8.5 hour shift without even getting to complete my shift first, AND on Christmas Eve of all days.

    I wasn’t even given some kind of a verbal warning in advance, or a letter of notice regarding prior complaints. I was immediately brought in the ETL’s office and then told to go less than 3 hours into what was supposed to be an 8.5 hour shift today, without even being allowed to complete my shift, AND on Christmas Eve no less.

    Another thing. The first time I applied to work at Target, I was actually turned DOWN the first time, and they were very uncooperative. The second time around, when I came back with my job coach from a special needs vocational training program, he provided actual documentation and evidence that even though I have a disability, I’m actually eligible to work and had a ticket to work, and the second time around, they changed their tune REAL quick and hired me, but reluctantly so, because I guess they figured they had no choice but to hire me in order to avoid a possible discrimination suit. So, I believe they decided to hire me to fire me later. They hired someone with a disability knowing I have certain limitations, and hired me during the Christmas holidays, which is one of the busiest times of the year, gave me ridiculously long hours working 8.5 hours a day, 3 days in a row back to back, and I’m convinced that they did not provide me with proper training from management on purpose, knowing full well I would mess up at some point, just so they could find an excuse to fire me barely 2 weeks later. I believe they WANTED to set me up for failure, since they didn’t want to hire me right from the very beginning, but the only reason they hired me in the end is, they realized they had no choice at that point.

    Target hiring me solely because they wanted a gold star for having someone with a disability working for them, and then showing me the door before I can even get used to the new job is an absolute disgrace. I wish I had a word for what that makes Target because disgusting and unjust does not quite describe the character it takes to treat people with special needs like they are lesser. I will not be shopping at Target anytime soon for quite a while.

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