Home > Autism Speaks U > Who To Tell About Being Autistic?

Who To Tell About Being Autistic?

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

I can’t help but take this blog post personally, because I think now more than ever I have questioned telling other individuals about being autistic. In one of my previous posts, I talked about how I came out about being autistic during my freshman year of college almost 4 years ago. In high school, I had no worries at all about being autistic because no one was there to judge; everyone had a disability and I was with people I could relate to.

“Autism can’t define you, only you can define autism.” That’s what I said. And while it’s true, I still fight for my rights to be treated  just like everyone else. I wish this could be described as a fairy tale ending; you see someone against all odds prevail in the end; however, the road blocks along the way have been staggering. The example below will hopefully summarize my point….

I had recently been seeing an individual at my university, who had no idea that I was autistic. This wasn’t because I was holding back, merely something that had never come up. She didn’t know that I was autistic and we were doing great. Then something happened, something that I really didn’t understand till just today.

A few weeks back I appeared on Caucus NJ, on a segment called “Breakthroughs in Autism,” with Steve Adubato. On the air I discussed my life growing up with autism. As any person who ever is on TV would tell you, it’s a very exciting time. Once the episode aired I was telling my friends, my parents, pretty much anyone in an ears length of me. However, one person who saw the show happened to be the girl that I had been seeing. As soon as she saw the clip, things had changed dramatically. Every time we met our conversations would become more distant and less frequent and finally, what ended up being great turned into something of pity.

“I think we should see other people.”

“Uh…..Why?”

“I think you should be around people more like yourself.”

“What does that mean?”

“You know, people who are more like you.”

“People more like me?”

“Yes.”

“Enlighten me please.”

“You know…people who know who you are.”

“And what people would those be?

(pause)

“Well?”

“I’m so sorry…”

I could tell you that it wasn’t about having autism, but it would be a lie. I could tell you that I went back to my apartment, cried and asked what I did to deserve this. But, honestly, I’ve been there before and will certainly be there again. My best friend freshman year even called me out on it, “Why didn’t you tell me you were autistic? Aren’t we friends?” On the other side of this dilemma, I have been called out about not being autistic enough. “He functions so well, he couldn’t have autism.” I’ve been associated with several autism organizations that have considered me, “misdiagnosed” because I didn’t show enough, “autistic tendencies” and therefore “not autistic.” Autism can’t define you, but apparently others can definitely define you as autistic.

So I guess the answer to this topic “who to tell about being autistic?” really comes down to how secure you are about being who you are. You don’t have to go up to every new person you see and say, “Hi, I’m ____ and I have autism,” but if you do feel like mentioning it, don’t be afraid. I don’t want to come off as insensitive in this post to those who I know don’t have a choice on whether or not to tell people about being autistic when its apparent to some. My advice stays the same, security in yourself as an individual is the best way to approach life and build your confidence. Everyone is unique in their own way. The people who I mentioned in my post have been ignorant and the only way to defeat ignorance is by awareness. Be proud of who you are. As a matter of fact, love who you are. Everything happens for a reason and if you ever need a hand, please know that you are not alone.

(This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org. Thanks everyone!)

  1. October 18, 2010 at 9:39 am

    Thank you for sharing this! And thank you for the courage to blaze a trail for tolerance, education, understanding and acceptance.

    I’m the Mother of a son who is defined as “marginally autistic” and can only imagine how he feels. Your post offered amazing insight and I pray every day that brave individuals like yourself will continue to pave a way for others coming up.

    Many Blessings To You!

  2. Paula
    October 18, 2010 at 9:44 am

    I loved reading your post Kerry! Thank you.
    What a great quote “…the only way to defeat ignorance is by awareness.” You have so many reasons to be proud, you are great.
    Keep up the good work!

  3. Larry
    October 18, 2010 at 9:48 am

    Kerry – thanks for your words, as they do matter to parents of a child with autism. Since my son is a bit more “noticeable”, in regards to being autistic, I actually find telling people tends to put them at ease a bit. One of my goals in life is to break down any stigma attached to being autistic by the time that my son reaches university, so that it may not affect him in similar ways, as per your infortunate incident with your friend.

    When I was a child (I am 38), having diabetes and epilepsy were also looked upon in negative ways, as it was mainly that people did not understand much about it. It took a generation, but people began treating people afflicted with those ailments with more dignity and understanding. With trailblazers like you, we are well on our way to autism being treated in a similar manner.

    Keep up the good work!
    Larry

  4. mchele
    October 18, 2010 at 10:15 am

    Thank you for your story. My son although young has been told the same stories of misdiagnosed or he’s extremely high functioning that he can’t be autistic. I pray for all affected that we have more acceptance and less pity. Thanks for the insight.

  5. Lisa Coakley
    October 18, 2010 at 10:39 am

    I am so glad I had a chance to read this article. My son Julian is 7 years old and just diagnosed autistic.He is very high functioning so people including family members seem to think he has been misdiagnosed and my husband doesn’t want anyone to know that he has autism.I am always wondering who we should share this information with.

    As I sit here and wipe back the tears,you give me so much hope just reading that your in college and that you even had a girlfriend. You should be very proud of all that you have accomplished. Thank you for sharing your story.

  6. Suzanne Baird
    October 18, 2010 at 11:00 am

    I am a Mother of a 5 year old with autism. I have often wondered what my son’s life will be like when he is older. Will he “outgrow” his autism (meaning behaviors might no longer be apparent)? He seems cognitively capable of doing anything, has a few stims, is still developing spoken language, needs some sensory helps, but really he should be able to be as much a part of the world as anyone else. I have wondered how a young lady might react/respond to learning of his autism and whether or not he should proceed in life revealing or concealing his autism. Honestly, it is really no ones business…but…when you start entering into close personal relationships, isn’t there a point where it is dishonest not to reveal your autism?

    I guess what I am trying to say is that it really is up to you. If you have met someone who you care about and hope to have in your life for a long time – whether that be a truly good friend, or a potential spouse – eventually you will have to decide if you want to trust those people. If they walk away (after knowing you well) just because of your autism…then you’ll know that it was for the best. The greatest “awareness” is the truth – if they see you as you are and not as an autism cliche. My guess is that for most, if they truly ever cared about you, they’ll remain your friend and nothing will change…

    • Jean
      October 18, 2010 at 12:27 pm

      Hi Suzanne,
      I am the mother of three. Two have Asperger’s. My younger of the two had a few stims, namely huge eye contact issues and shaking his hands when he was excited. Today, he is 23, working on his masters degree. He has had his own apartment for three years. He drives, joined a fraternity and is impossible to nail down. He still has a few remnants of the eye contact problem, but the hand wringing is long over.
      The other one is seemingly more “normal” but has more issues assimilating into the world. He is shy and that seems to have more of an impact. He will likely always live at home. He works part time and just refuses to let anyone help him with anything. It will be a much more difficult road for him.
      I was just struck with your statement about wondering what life would be like. I realize no one can ever be sure. But, then I also know I often thought my fraternity joining son would never be able to even cut his food with a knife, much less, ride a bike, drive or live independently. He consistently proved me wrong on every count. Just do what you can to help your son without holding him back. Good old common sense goes a long way. Like Kerry is expressing, it is all about building self confidence and esteem. Best wishes to you.

  7. Karen Velez
    October 18, 2010 at 11:26 am

    Thank you Kerry for sharing this insight. I have a 4 year old boy who was diagnosed this year. We struggle with who to share this information with within our family and do so carefully so as to avoid ignorance and tension. I’m glad you were able to see this girl was lacking and she certainly is not worthy of you!! You are an amazing and successful person! Congrats on the TV appearance! Thank you for continuing to share your experiences with us. Your perspective and the info you share are both very valuable!

  8. Diane Tufts
    October 18, 2010 at 11:31 am

    “My advice stays the same, security in yourself as an individual is the best way to approach life and build your confidence. Everyone is unique in their own way. The people who I mentioned in my post have been ignorant and the only way to defeat ignorance is by awareness. Be proud of who you are. As a matter of fact, love who you are. Everything happens for a reason and if you ever need a hand, please know that you are not alone.”

    I think those are words to live by for all of us. Thanks so much. I’m so glad I took the time to read this. My son is an individual who does not appear overly “autistic” in many situations these days, because he’s made so much progress. Yet I recently found myself having to paint a picture of how things used to be for the staff at his new school, so they could appreciate just how far he’s come, instead of focusing on the difficulties that remain.

    We don’t mention autism to everybody we happen to meet. But we do speak about it freely when the subject comes up for one reason or another, and it helps people to be more understanding. My son, who is 14 and used to never want the subject brought up, is now sometimes speaking and writing in school about having autism and seems so much more accepting of himself. People get to know him as a kid who has autism and who is also funny and smart and and nice to those around him, and that helps to educate people about the value of everybody who has autism.

    I really believe that getting to know an individual who is living with a particular condition or situation is really the only way people open their minds and learn to accept those who seem outwardly different from themselves. For some people, it takes more than that. Giving people a chance to get to know who you really are at least gives them the opportunity to learn. And if they aren’t ready, then it’s probably best to know that and invest your time with those who are.

  9. October 18, 2010 at 11:55 am

    Kerry, the true friends in your life are those that accept you no matter what. Anyone that ends a relationship with you or treats you badly just because you have autism was never a friend in the first place. Love yourself first and others will follow. If not, I always say it’s good riddance to bad news. You’re a terrific young man for who you are, not what you are. Never let anyone lead you to believe otherwise.

    I am the mother of a 17 year old boy with autism. He would be considered high functioning, but I really don’t like that term as the label gives you no idea who he is or what he can accomplish. I often think about what the future holds for him. I hope he can be as amazing as you.

  10. Jean
    October 18, 2010 at 12:39 pm

    Thanks for sharing, Kerry.

    I suspect your lady friend probably talked to someone who advised her not to stay involved with someone with autism. She probably feels very ambivalent about her decision as people do when they base a decision on something so shallow. She may change her mind as time goes by. However, even if she does, you will likely move on to someone even better!! Do not lose heart over this. I know that is easy to say.

    You are a young man still investigating who you are. Cut yourself some slack and some time. Find the lyrics to the song, “Elusive Butterfly.” It is all about going about your business and realizing all will happen in its own time. You are just beginning to realize your potential. I think you are on your way to an amazing future and some young lady out there is going to realize what a true gem you are. Hang in there.

  11. Adam Vogel
    October 18, 2010 at 12:56 pm

    I know it’s tough. Let you know Kerry that I’ve been on the job hunt for almost a year and whenever I have a job interview I try not to let employers who are interviewing me know that I was diagnosed with autism. I feel that if I would let employers know who are interviewing me know about my chances of getting hired would be close to 0%.

    Considering the fact that the job market right now is tough, it’s best that I use the “don’t ask, don’t tell” motion, which really shouldn’t be happening to folks with disabilities.

    Finally, I’ve got a question for you Kerry. When are you supposed to graduate. I wish you good luck on the job hunting because it’s extremely difficult right now.

  12. Loramath
    October 19, 2010 at 4:59 am

    I don’t think autism or autistic defines what somebody is. No real world, high functioning, or whatever, define anybody because we are all different.

  13. Loramath
    October 19, 2010 at 5:03 am

    I think the ones that need a diagnostic name are parents, eager to know what is the future of their son. But no diagnostic will really tell them what this future will be, only time will tell.

  14. Melissa
    October 19, 2010 at 9:00 am

    What a wonderful post, thank you for sharing. ” Security in yourself as an individual is the best way to approach life and build your confidence” that statement is so true for everybody to follow. We live in a society that has there own belief on “the perfect person,” but in reality we all have something to offer to society and we need to be true to ourselves and respect everyone around us. There are still many ignorant people in the world, but as you said Kerry, with awareness and education, hopefully that number will start to diminish. Good luck with all your futue endeavors and continue to believe in yourself. I will be sharing your story with the parents that I work with! I huge part of my parent training sessions has to do with self-esteem & self-efficacy, thank you again.
    http://www.skillfulsquad.net

  15. Erin Kuhlman
    October 19, 2010 at 10:47 am

    First of all, I love to read your posts. They bring hope to me as the parent of a three-year-old daughter who has autism. Jeannie has definite social difficulties as well as some communication delays; however, she is quite ingenious and looks normal, so people who see her meltdown in a store or at the playground brush her off as a spoiled child who “just needs a good spanking.”

    When this happens, my dilemma is deciding whether or not to tell them, via cute little business cards that give a simple definition of autism, that her behavior has nothing to do with being a “brat.” I am usually sorry, however, when I do try to explain Jean’s situation because the blank faces and/or rolling eyes, only serve to aggravate me even more than the “brat” comments. But as you wrote, the only way to counter ignorance is with awareness, so…I will continue to bite my tongue and educate people whenever and wherever I can.

    • M.T
      December 23, 2010 at 2:29 am

      So appreciate your understanding I wore blinders and was very happy! Only tempted a few times to scream then i was to tired to even tell some one off my mission was to get in and out oh and one time bought $50.00 lincoln log set at Sam’s,and he never played with it. He was pretty awful and I was pretty patient when I look back. I say let people think what they want for there way is always better even though we try to seek patience unless they have compassion or a child with autism they will not get it. I pray and it keeps me smiling!! Oh one time I was at end of ropes and made a lady feel like ? when she was in AW!!!! of his meltdown I was calm and told her he has special needs then asked if she needed me to feel out paperwork or if she could do it! She re-thought and then said oh I thought he was hurt, she and I knew she did not know what to say. I secretly was happy after that.By the way my son is gorgeous and tall so people think he is really rotten and I am a mom who needs to spank as well. He just turned 8 and is almost 5 ft tall tell me about issues better to look or not to look you go figure people.

  16. October 19, 2010 at 2:29 pm

    Kerry – thank you for sharing your story. Our son is 4 and has an aide in a typical preschool. We were very honest with the teachers and other kids about Liam. His classmates want to help Liam earn tokens for playing nicely or sharing with a friend. Knowing why he is different makes it easier for them to try to hang out with him. Hopefully, honesty will help his peers develop more acceptance of differences and just as Liam learns how to deal with his social challenges, they’ll learn to handle social situations in which everyone may not be on exactly the same page!

    If more people know what “high-functioning” autism looks like, there will be less ignorance. And now that so many children have an autism diagnosis, we’ll have a generation of adults who have grown up with them, and can say, “Oh, you have autism? My friend in high school had that.” And then you can talk about that psych class or the cute new girl in Statistics.

    On a personal note: one of the amazing things in life is that the very qualities that may make some people wary of you are the very qualities that others will find attractive. I was once warned away from a young man, being told he was “intense.” For the person warning me, “intense” was something to be avoided. I loved that this intense guy was able to examine the world in such depth and with such an original take on life and we became good friends. I later married another “intense” man who we often say, would likely have been diagnosed with Asbergers, had he been a child today.

  17. M.T
    December 23, 2010 at 2:09 am

    WOW! My tears have not flowed for at least 5 days and I keep trying to absorb slowly as to research and do the best for my guy who is high functioning and who has learned the art of being around others yet now has developed hand thrusting. He just turned 8 and is a gorgeous boy and has the height and arms of a athlete, my heart hurts to see his trying so hard to have friends he even prays to God for friends yet it is not happening i see as time goes on his peers are flowing and he is struggling. I read hope and determination and my son has both qualities, he makes me laugh as he said this eve. “I suppose ” then looked at me and said” Mommy what does suppose mean?” I explained then asked how where did you here word he said program on tv i smiled and said you used perfectly he was happy with himself. Proud mom and I am blessed to hear your thoughts and know my guy is meant for greatness as you are to many people who feel alone. Thank you for your courage for it spoke to my heart.

  1. March 3, 2012 at 6:44 am

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