Voices of Autism: Hearing the ‘R’ Word

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Laura Shumaker, mother of Matthew, 24, and author of the blog www.laurashumaker.com.

matthewMy son Matthew, who has autism, is a huge Beatles fan and asked me if we could go to the music store to buy a “Revolver” CD. He was wearing plaid shorts, a different patterned plaid shirt, white socks and work boots.

“You might want to change your shirt,” I said. “Your plaid shorts would look even better with a plain shirt.”

“I look good,” he replied, “and we’re not going to talk about it anymore.”

When we entered the store, Matthew saw an entire rack dedicated to Beatles music, and ran over to it exuberantly, bumping into another customer-hard. He apologized profusely as the customer shook his head.

“What are you,” the customer yelled, “a retard or something?”

“I give up,” Matthew replied passively.

I guided Matthew to the cash register, careful not to make eye contact with the irate customer. Matthew has always been socially awkward, and while I’m well practiced at unfortunate public scenes like these, they still upset me. I was grateful that at least this time, Matthew seemed oblivious to the conflict.

As we drove away with his music, I convinced myself that Matthew didn’t know that the guy at the music store had insulted him. I shared the story with the rest of my family, and they laughed. “Thank God he didn’t get it,” they said.

But when I put my head on my pillow later that night, I knew that on some level that Matthew did get it. God only knows how many times he has heard the “R” word.

I thought back to the time when I was a teenager, and I laughed at a weird boy at summer camp who was walking funny, rocking, and flapping his hands. The boy’s brother, who was also at the camp, saw me laughing and glared at me, deeply hurt.

I’ll never forget it.

I’ll bet that as soon as that guy at the music store blurted out that awful phrase, he realized that the woman with Matthew was his mother. He would have apologized if he had the chance. I’ve already forgiven him.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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  1. by debi9kids

    On April 9, 2011 at 1:05 pm

    Horrible. Isn’t it?
    How sometimes until we are in “those shoes” that we don’t realize how far the hurt reaches.

    I’m glad your son wasn’t hurt by the incident and proud of you for finding forgiveness so quickly.

  2. by Mary McK

    On April 9, 2011 at 4:15 pm

    I used that word as a child, just like everyone else, as a joke. Now it’s no laughing matter. I have to tell people my autistic son does not have mental retardation. But honestly, I think he has social retardation, and it is brutal on me. All we ever want as mothers is a kid that bounces around having a great time in life. Autism kids have anything but a great time because of all the conflict. Eventually, the do just fine as an adult, like Matthew did here.

  3. by Nidia

    On April 9, 2011 at 11:40 pm

    Hugs momma! My daughter is 6, doesnt know when kids are being mean to her. Im not sure which is worse other kids being mean, or Adults. I have had my share of both. Some people ar cruel, and just dont think.

  4. by Amy

    On April 10, 2011 at 12:11 pm

    my sons dad has an ex girlfriend that know that our son is autistic and she still calls him the “R” word and it makes me so mad because she is just trying to be mean

  5. by Amy H.

    On April 10, 2011 at 12:12 pm

    Matthew handled that situation like a champ. You have a wonderful son, and I’m sorry that he (and others) have to cross paths with such miserable, narrow-minded people.

  6. by C and P

    On April 10, 2011 at 12:16 pm

    My son is recovered after 7.5 years of intensive intervention, so those encounters are now a pretty distant memory – but my experience with autism has forever changed the way in which I view and treat other human beings. I guess that’s why our family was touched by the disorder. We now have a greater empathy for others regardless of their challenges. I hope the guy in the record store can come to this realization without ever having to experience ASD in his own life.

  7. by Mimi Stratton

    On April 10, 2011 at 12:24 pm

    The other day I was at the community center with my 21-year-old, non-verbal son with autism. We had to walk past the area with the “tough guys” who play pool because my son had to go to the bathroom. The “tough guys” started to laugh and make comments, until they saw me–who was making direct eye contact, daring them silently. They shut up. We walked past. I felt good. This is part of being my son’s advocate. You don’t mess with my kid. Ever.

  8. by Dee

    On April 10, 2011 at 12:26 pm

    @Mary Mck, People don’t usually say social retardation or mental retardation about their own son… I find it weird that you say that.

    Search spread the word to end the word. It’s to stop this word; the R word, from being used. So, if your talking about your own son… You can say he has a disability but you don’t have to say the r word

  9. by Colleen

    On April 10, 2011 at 12:30 pm

    My daughter and I were recently at the Mall and Kiki walked in front of an older woman briskly, the older woman turned to her mother (even older and following behind in a walker) and said, “Fat and Rude!”
    My feelings were hurt and thankfully Kiki had no idea of this woman’s rude comments. Too bad everyone can’t just take a breathe and assume the best in each other. Thanks for sharing your story, we should all just take the time, to breathe first.

  10. by Anne

    On April 10, 2011 at 12:41 pm

    I heard the “R” word when my son was 3.. The doctor was afraid of the “A” word. Nothing infuriated me more.
    In your situation I would have explained to the man that my child was autistic and apologized. If he continued to be irate I would have told him to kiss my a$$ and some other choice words. I have no tolerance for ignorance.

  11. by Wendi

    On April 10, 2011 at 12:42 pm

    @Dee, the words “retard” or “retardation” literally mean “(to) slow/delay” or “slowed/delayed,” respectively. In and of themselves, the words aren’t offensive; it’s the context in which they’re used that can be hurtful. They’re still used in the scientific and medical communities, as in, “to retard the growth of bacteria in the petri dish…” I don’t think that Mary was being inappropriate. I consider MYSELF to be “socially retarded” because the circumstances of my childhood didn’t permit me to develop my social skills in a “normal” fashion.

    I’m not being snooty or snippy with you by telling you this; a lot of people don’t know that the words weren’t originally intended to be used as a put-down. Please don’t be offended. (And, if you ARE offended, it might be the result of my “social retardation”; plenty of times, I’ve tried to say things to folks with no intention of being offensive whatsoever, and it backfires. I’m not always astute at knowing how people will take the things I say. It’s kind of a perfect example of the term, now that I think of it!)

    That said, I agree with you that the words are used as insults far too often and I cringe every time I think about my ASD son being called The R Word by mean kids when he gets older.

  12. by Lisa

    On April 10, 2011 at 12:49 pm

    Massachusetts has banned the “R” word and I wish other states would follow.
    Growing up in the 79′s and 80′s was altogether different than the times now. We ALL used the “R” word back then. Now, I cringe when I hear it and I politely ask people to “not use the “R” word around me or anymore if they can help it.
    My son, 13 is also autistic. He wouldn’t know an insult if he heard one, or so I thought. One day he overheard a friend of mine call someone the “R” word. My friend knew better and it slipped out; as he too has autism in his family. My son then turned to me one day and asked if ‘my friend was calling him that word’. I came to tears. I just wish people would realize the hurt and pain this one word can cause.
    The only thing we can do as parents and others who are affected by autism is continue to spread awareness.

  13. by Mike

    On April 10, 2011 at 12:58 pm

    After encountering an Aspie at work (with whom I am good friends) I looked up details on Asperger’s to discover that I myself possess a remarkable number of Aspie traits. I approached an MHMR-specialist friend of mine (who works with Aspie adults to coach them thru college) to reveal my findings — and she nodded knowingly, but offered that I’m a fairly high-functioning sort.

    I use the R-word myself, a lot, and even knowing that I might be perceived as a “retard” by a presumptuous public, I could frankly care less. I recognize insults sent my way, but public perception of my metal acuity is not something I’m particularly concerned with, in the slightest. They could call me a swizzleberry snarfgaggle, or a m-f’in b-tard, and it would make no difference.

    From my angle, getting snippy over quite possibly the least insignificant slight someone could preset you (an insult), is silliness beyond reason. It’s not that I don’t have emotions or can’t recognize emotions, but instead seems pretty obvious that most emotional reactions are steeped in futility. I can’t count how many times my mother, who seems to me as unreasonably preoccupied with public perception, and I have had the conversation resembling:

    “Don’t you know that he just insulted you?”
    “I’m aware that he tried, but it’s nothing.”
    “Well I’m offended.”
    “You’re offended that someone unsuccessfully tried to insult me? Would the proper response have been to get upset? Or to get upset quietly and pretend you weren’t? Should I appropriately get myself all up in a huff and be grumpy for the rest of the day about how a complete stranger made an ignorant remark? Or so I ignore it and be done with it?”

    Clearly, the man in the store didn’t actually insult him, and the mother felt insulted despite not even being the one to whom the insult was pointed. In order for an insult to sting as it is intended, a reaction from the person it is directed must be evoked. Your son’s non-reaction made the intended insult lose its power.

  14. by Mike

    On April 10, 2011 at 1:01 pm

    Correction in my response, 3rd paragraph, “least insignificant” should be “least significant”.

  15. by Holly

    On April 10, 2011 at 1:29 pm

    Matthew is lucky to have a mother like you!

    My son Beckem is 6 and has Autism, and the other day at school a couple of kids took his shoes and he told me they laughed at him. I just cried and talked to the school. I teach all of my children to be kind to one another and that it is completely unacceptable to make fun of another child. I don’t know why it’s not important for some parents to teach there kids the same. I pledge to never say the “R” again!

  16. by Casey

    On April 10, 2011 at 1:45 pm

    To the above response (Mike): You do NOT get to decide whether someone else feels insulted. If you don’t feel you are/were insulted they good for you. However you absolutely don’t get it. You just don’t get it. How could you be so narcissistic?
    I will have to repeat myself, sorry. YOU DO NOT GET TO DECIDE IF SOMEONE ELSE FEELS INSULTED! You say the man didn’t insult him is the same is your opinion but you cannot say with any certainty that he did not. YOU don’t think he did. Good for you. Perhaps you do have Aspergers but that is not a license to use derogatory terms yourself or decide what is an insult or not. Insensitivity can be a character trait of those with Aspergers and you definitely have that.

    If you use the word “retard” then you are 100% part of the problem and ZERO percent part of the solution. Disorder or no disorder.

  17. by Rachel parks

    On April 10, 2011 at 1:56 pm

    Thank you, Parents magazine, for finally including the invisible masses in your world. I pray your coverage helps parents of “typical” kids raise them to make the world a more compassionate inclusive place for ours.

  18. by Mike

    On April 10, 2011 at 2:29 pm

    Casey, I suspect your attempt to criminalize my response may inadvertently criminalize the author’s response.

    I think it’s just as criminal to say that someone else is actually insulted — without even knowing whether they are or aren’t — as it is to say that someone isn’t insulted. Both cases are attempts to reach a conclusion of an hypothesis but skipping experimentation. Both mine and the author’s remarks were obviously speculative.

    In the same way that I can’t say whether someone feels insulted (which I didn’t), nor could we legitimately say someone actually is insulted, without asking them. Obviously lacking the ability to ask the son whether he was or wasn’t, saying that he wasn’t insulted is as identically dastardly as suggesting that he really was.

  19. by Joy

    On April 10, 2011 at 2:33 pm

    I understand that the word Retard originally is not meant to be a label, but when it is, that’s when it’s used inappropriately. It’s sort of like the difference between being called Autistic and saying someone has Autism. You showed great patience and tolerance of that guys ignorance. I would have probably told him off.

  20. by Jeronimo

    On April 10, 2011 at 2:34 pm

    Just because your child doesn’t appear to “get it” doesn’t mean he/she doesn’t understand… They still hear it all and most likely remember it longer than anyone else. I have seen and experienced children on the spectrum who recant a story much later. Even nonverbal kids have typed out that they have heard it all and have simply been listening. Make it known that the other person’s heart is obviously impaired.

  21. by Mimi

    On April 10, 2011 at 2:34 pm

    My 17-year-old, now homeschooled daughter was called “the retard” so often from 5th grade on that it was shortened to “‘Tard.” Everyone called her that. The day a high school teacher admitted to having done it was, shall we say, a turning point.

  22. by ben

    On April 10, 2011 at 2:59 pm

    i have a 6 year old autistic daughter.and am not so forgiving.dude in the music store was lucky he didnt get his a$$ handed to him.

  23. by Steve

    On April 10, 2011 at 3:13 pm

    And I see it as one of the beauties of Autism, at least with my son. Chances are, much like it seemed with Matthew, that he would be oblivious to the comment. It is something that I try to teach my other children. Mean things that people say to us only have the power that WE give them. If somebody says something and it isn’t true then it only shows there ignorance.

    Yes, as parents it can be hard to take if we are unable to remove the meaning of words said by the ignorant. In time we can progress to the same level.

  24. by Darcy

    On April 10, 2011 at 4:32 pm

    I hear the word “bully” way too often. My son just turned seven. A parent from school called me to tell me that my son gave her son a black eye in line after recess. The school states there was a situation at recess where my son was throwing sand and my son was brought in before the class lined up to come inside. The parents did not believe me and kept calling my son a bully. They said the school was covering it up as they are short staffed. They have no clue about Autism.

  25. by Anne

    On April 10, 2011 at 4:42 pm

    Sometimes people can be really thoughtless, but we can all hope that later on they will reflect upon what they said, or did, and realize how hurtful they were, then learn some compassion from it.

    Hopefully the next person with special needs they meet will benefit from their thoughtless moment.

    I personally don’t pay a lot of attention to the looks my 12 year old son with autism may receive… Thankfully no one has been cruel enough to say something like that to his face.

  26. by Sheryl Honer

    On April 10, 2011 at 6:26 pm

    The man at the music store obviously was the “R” not Matthew. But people will never learn from their stupidity unless we the parents of these amazing people with Autism (not Autistic) as they are people 1st. Stand up and educate them. I have been in the store my son having a fit the cashier advising me that a good swat on the but would fix it. So I picked up my 3 year old and handed him to her told him he had autism and if she thought that could fix it I would pick him up the next week. Needless to say she was in panic mode. From that point on anytime I saw her I made sure we used her line. Sometimes we just need to make a point

  27. by BeatleBangs1964

    On April 10, 2011 at 6:34 pm

    I am a huge Beatle fan and that is something I respect.

    I know a number of Aspie Beatle fans and believe me, that is a demographic that is not as rare as one might think.

    Good on you for forgiving the irate customer. Good on the brother of that long-ago camper who got his message across and, unwittingly taught compassion and acceptance.

  28. by KayLRZ

    On April 10, 2011 at 6:39 pm

    Your grace just brought tears to my eyes.

  29. by Manu Erickson

    On April 10, 2011 at 6:52 pm

    So this makes me sad. Not only sad for my son but for our family and friends. My son is young and gets away with many things. In due time, it will all catch up to us and I ask myself how do I explain that without tears, fear of rejection or anger of others. I am always up for a challenge, but I will be so sad and upset if someone said anything like that to my son or anyone just because everyone is unique and needs to be them selves.

  30. by teresa

    On April 10, 2011 at 9:08 pm

    I was at my moms recently and her husband commented that my son needed to be on pills. All because my son was playing with tos and my step dad was tired. I feel he has it turned all around. Someone my need pills but its not my son. How rude of him. Its hurtful to hear your child be insulted and I hate to see him hurt.

  31. by Bizz

    On April 10, 2011 at 10:24 pm

    I can relate to a certain degree of this. I am 20 and have AS. In school I was called the “R” word amongst other things and it certainly isnt easy or nice to deal with. I guess the difference here is I’m generally well aware when someone insults me and would quite happily give them a glare or as such if I don’t even know them. Many people have regarded me as ‘different’ and when I was younger I didnt understand and found it much more difficult. I understand I have it pretty easy compared to others as I have minor Asperger’s but it doesn’t mean I don’t encounter these issues or struggle to comprehend certain things, like people’s body language and what not. Anyway, I’m glad your son didn’t seem to be to bothered by that man’s insults as such. People don’t understand certain things until they’ve experienced it themselves.

  32. by torree

    On April 11, 2011 at 12:01 am

    I know how he feels, and how you feel. I was born with autism, I didn’t understand when people were being mean, but now I wish I could go back to that time. I’ve been called retarded and much worse on a lot of occasions. It is sad to say but after a while you become numb to the words, you either get so used to it you believe it, or it just doesn’t hurt anymore. I know what you’re talking about, I’m sorry that it happened to your son.

  33. by Lynn

    On April 11, 2011 at 4:58 pm

    I have always told my daughter: Never allow others to define who you are. My daughter was diagnosed with PDD over 20 years ago. She is now considered to have asperger’s. She has dealt with many ignorant people over the years — some were children her age and some were adults. I have intervened when necessary, but sometimes I have not been able to do so. She has finally realized that it is THEIR lack of understanding that makes them ignorant. She IS NOT the ignorant one. Luckily, there have been some very nice people in her life as well. She almost has her college degree. She did not allow the naysayers to have the last word. But then again, she takes after her Mom — LOL. I always get the last word! :)

  34. by BeatleBangs1964

    On April 12, 2011 at 12:29 am

    Matthew is plainly a connoisseur of the fine arts if he is a Beatles’ fan! Revolver was one of the most serious albums ever recorded. George Harrison wrote some serious songs on that one, “I Want to Tell You” being his best with the Beatles.

    I, too can relate because let’s just say I’ve had my share of adverse experiences with intolerant people.

    If I had been there, I would have been talking about the Beatles to Matthew. See, any excuse to talk about the Beatles and share in some Beatle joy with another zealous fan works for me.

  35. by Barbara Manatee

    On April 13, 2011 at 9:59 pm

    I was just talking to a parent this morning about her decision for where to send her daughter to school next year. She is currently in my elementary special ed classroom. Her options next year would be a special ed classroom in a gen. ed. Jr. High or our district’s center based program that is completely special ed. her daughter is lower functioning and very socially unaware. Her mother is worried about sending her to the regular Jr High for fear of her being teased or picked on and unable to defend herself. I totally can respect her fears. As much as we try to educate and help others empathize, kids & adults are still human and we all have our faults, often at others’ expenses.

    Good luck with your son.

    April is Autism Awareness Month. I’m dedicating my blog all month long to Autism.

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