Home > In Their Own Words > In Their Own Words – Ten Things That I Wish You Would Accept, No Questions Asked

In Their Own Words – Ten Things That I Wish You Would Accept, No Questions Asked

This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.”  Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum.

I started blogging almost exactly a year ago as a way to process my circumstances better, as I always process better in writing, and hopefully as a way to demystify autism to parents and caregivers of those on the spectrum. I realized long ago that some people seem to have a knack for handling my quirks, while others … don’t.  This list, “Ten Things That I Wish You Would Accept, No Questions Asked,” arose from considering the things that the most positive people in my life have always done, while also thinking about what some not-so-positive people consistently do that causes a problem. I can’t speak to the truth of these statements for everyone on the spectrum, but I am guessing that there are many commonalities amongst us when it comes to these matters.

1. I can be surprisingly good at one thing (say, remembering conversations precisely as they happened many years after the fact) and surprisingly bad at another thing that you might think should be so much easier (like keeping track of receipts or remembering the procedure for filling a prescription).

2. Just because I have the words to type it does not mean that I have the words to say it.

3. I really do hate to melt down, especially in public. If there were another way out, I would always take it.

4. I never play stupid. If I ask a question or say I don’t get it, it means I don’t get it. Please don’t make me feel dumber by saying that I’m faking it, just because it seems straightforward.

5. What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day … or at least until I change clothes. If I’m crabby, it’s because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.

6. I can’t control my excitement over cats. So if you mention cats or point out a cat, realize that I’m going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?

7. I am often completely unaware of self-injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I’m agitated for some reason. In the moment, I don’t know that I’m doing it; if made aware, it’s so compulsive that I almost physically can’t stop myself. But using my head, obviously I don’t like the results of it.

8. I am exactly the same person inside regardless of how engaged (or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I’m reacting in that moment, but please continue to treat me like the same person that I am.

9. Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I’m disengaged and you’re forcing me to “act normal,” then no, I don’t feel very happy. If you’re interacting with me in a way that I can in that moment, then I can be as happy as I’ve ever been.

10. While autism does mean that I am absorbed within myself (aut means self, after all), that doesn’t mean that I don’t want you around. If you can come to me, rather than forcing me out of my world to come to you, then I’d love to let you in. There’s a whole world in here; maybe you should check it out.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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  1. July 30, 2010 at 10:00 am

    Thank you… I know in my heart that these (your) words would be my son’s if only he could express himself better… thank you, thank you, thank you

  2. July 30, 2010 at 10:08 am

    … just re-reading #9… my biggest lesson from my son has been this fact… you explain it well. My (and the neuro-typical world’s) definition of happiness is not necessarily his… I wish I could explain this better to “others”. Thank you once again…

  3. Stephanie
    July 30, 2010 at 10:35 am

    What a well spoken young lady! This article is such a gift to those of us who live and/or work with non-verbal persons on the spectrum!

  4. caizooka
    July 30, 2010 at 11:27 am

    Thank you for sharing, Lydia. You are a beautiful and very articulate writer. This really helped me to better understand my son. I hope that he is able to express himself one day in such a fashion! Thank you and keep on writing. I’ll be listening.

  5. Teresa
    July 30, 2010 at 11:28 am

    Wow. What an affirmation of what I try to do right for my son and an eyeopener on things I need to always remember. I am so happy that you found a way to be able to “say” things to make people understand. I pray my son finds his voice…whether it be vocal or written or signed or illustrated so that he has a way to be able to make people understand him on his terms, rather than us trying to make him understand everything on ours. Thank you. And a question, I often just let my son “be”…I trust that when he needs to, he will come to me. For you, would this be the right approach?

  6. Beth Van Ness
    July 30, 2010 at 11:41 am

    Hi Lydia, I wish my son Alan and I knew you. Thank you for taking the time to write this. I know you speak for many others with autism, my son included. He is also 22 and expresses himself well, but not as completely as you. I love cats too. I have all my life. If twelve people are in a room with a cat, I will pet the cat first!

  7. Diane Tufts
    July 30, 2010 at 11:47 am

    Thank you so much for sharing that. I have a teenage son on the spectrum, and I suspect I reside somewhere there myself. I know both of us feel a lot in common with what you wrote, and I am impressed with how well you manage to put everything. Please keep writing and sharing.

    P.S. WE have three cats, and I think they make wonderful, accepting companions.

  8. Angie
    July 30, 2010 at 11:59 am

    Thank you I never thought about my daughters world but only how to make my world better for her. I can not wait to see her world, on her terms. Thank you againfor the insight.

  9. Jennifer MacQueen
    July 30, 2010 at 1:01 pm

    Really well written!

  10. Judith Dykman
    July 30, 2010 at 1:22 pm

    My grandaughter is just 9. My son is going through a divorse. He gets the girls 3 weekends a month. I would like to hear from others who have a child autistic and been through divorse. How it affects them.

    • lucy
      July 31, 2010 at 6:05 pm

      ihave asperger syndrome my son has autism, i dedicated my life 2 my son as i myself was in his world therefore i treated him as a normal human being. I did not realise how my children were affected by my aspergers. The past few years have been very tramatic for me and every1 around me. I got divorced but still i felt i could ring my ex husband i felt like nothing had or should change, i could no longer look after my son without my ex husbands help. He lives with his dad there is not a single day i do not want my life 2 be like it was before. I do feel lost and confused and angry!! If you meet me me i come across as selfish uncaring but i do feel every emotion for someone that is sad i just find it hard expressing this.

    • Andrea
      August 18, 2010 at 3:42 pm

      I am a 21 year old with Aspergers my parents got a divorce about 10 years ago. it has taken me a while to adjust and adapt to that change and the changes that have come up over the years due to their divorce. the hardest part was and still is handling the stress and change of going from house to another and adjusting to the houses environment both physically and emotionally.

    • Melissa Cruz-Skaggs
      August 21, 2010 at 8:41 pm

      My son is five years old and has Autism. His father and I have been divorced for two years and it is not easy for him to do the go back and forth thing. At times I feel he adjusts well to the transition, then at other times he acts out and I know why. He is sad that he can’t be with both of us and knows he has to go without one of us from now on. He usually comes home (our house) and either that night or the following day he will tantrum. It may be from his brother turning on a light switch because in his view, only he can turn lights on and off. And, boy does he at times, over and over. It may be from talking on the phone to his dad that night after coming back, it just depends on his mood. Whatever, the case if he really wanted to say what he felt he would say, “I love my dad and miss him when I’m not with him and I love my mom and miss her when I’m not with her!” He recently has had breakthroughs where he will get upset and start to cry and I’ll ask why are you sad? He has responded, “DAD!” It breaks my heart and fills my heart with joy at the same time, he is expressing himself but nonetheless hurts as all humans do. I love my son to death and I am always communicating with his father about being on the same page with his needs (triggers that set him off, routines, and allowing extra time for everything). I wouldn’t want any other son in the whole world!

  11. Jacqueline
    July 30, 2010 at 2:02 pm

    Dear Lydia,

    I am writing this comment to support you because you are truly a wonderful writer who is able to become the words of so many people. Keep expressing yourself exactly in the manner I have read today. Being a teacher of many students who are “somewhere in the spectrum of autism”, I have witnessed through conversations and classroom experiences an idea of their feelings. You with your gift of writing, has done a wonderful job explaining these feelings. A+ Lydia

  12. Melissa
    July 30, 2010 at 2:12 pm

    Thank you so much for this! I wish ALL people could understand this, it’s so hard dealing with people who just can’t and just wont understand. Both of my sons are autistic one non verbal and I know that if he could speak these would be his words. Thank you again so much!

  13. Katie Wright
    July 30, 2010 at 2:26 pm

    So well written Lydia. I really enjoyed learning about your perspective. Beautifully explained.

    Sometimes I cannot control my excitement over cats either. Our cat is my son’s constant companion when he is home.

  14. Judi
    July 30, 2010 at 2:58 pm

    What great insight you give us, the people that love and care for someone with Autism. Thank you

  15. Roger
    July 30, 2010 at 3:11 pm

    What an amazing post! Thank you for sharing your “10 Things”. I will strive to act on them everyday.

  16. Debbie
    July 30, 2010 at 6:46 pm

    Where can we buy this book?

  17. samantha
    July 30, 2010 at 9:52 pm

    Soo happy that you put this out there… I can’t wait to tryy and enter my son’s world.

  18. Rebekah
    July 30, 2010 at 10:02 pm

    I feel the same way. I cant control myself when i see cats either. I have two gorgeous little ones and they make everything worthwhile. They don’t judge, they just comfort you and purr as you comfort them.

  19. Marcia
    July 30, 2010 at 10:44 pm

    Lydia,

    You have a beautiful cat! Thank you for your heartfelt words. It’s good to remember there are always two sides to every coin. I bookmarked your list to check back with the school year. Take care. Hope your week is a great one.

    Marcia

  20. Leah Ashe
    July 30, 2010 at 11:22 pm

    Thank you, Lydia, for your profound insight and eloquent words. As a mother of two children who reside on opposite sides of the autistic spectrum, your willingness to share your experiences is priceless to me. I’m very appreciative! Leah Ashe

  21. Katherine
    July 30, 2010 at 11:46 pm

    Lydia your words hit home. Listening to your words and thinking of my great grandson lets me understand him so much better. Thank You from the bottom of my heart

  22. Christine
    July 31, 2010 at 1:34 am

    Oh Wow! Thank you. Kind of causes me to tear up. It gives me insight into my high funcitioning 11 year old son…and though I felt some quilt at my doing some of the negative things you expressed, I’m going to work harder to let me be the best him. It’s just so hard, because on the outside nothing looks different about him from other children his age. I realize now, he’s trying…and after all he really is a sweet and amazing boy. I just need to try a little harder not to control him and try and get him to act “normal.” I’m so grateful I came across your words on facebook.

  23. Erin Kuhlman
    July 31, 2010 at 1:06 pm

    Amen! You said everything my precious 3-year-old feels but can’t verbally express.

  24. July 31, 2010 at 6:36 pm

    Thank you Lydia for your beautifully written words. You are a wonderful writer. Working with autistic children each and everyday can sometimes be challenging. I don’t always totally understand what they are trying to convey to me in certain situations. You have enlightened me. Thank you very much. I too enjoy cats very much! Your’s is very beautiful.

  25. Inga
    July 31, 2010 at 11:11 pm

    Lydia, thank you for your words.Our family has a better insight into the “non-negotiable” items in your life & others in the spectrum. You gave my brother a voice he has never had. I shall follow your advice & pray that others can do the same.

  26. Angela
    August 3, 2010 at 9:41 pm

    I am so grateful to you for writing this! I’ve never personally known someone who had autism so I’ve never really informed myself with any of this but my 2 year old has not been fully diagnosed but I’m told he may be on the spectrum. So I’ve dived in head first into this spectacular world of Autism and have been reading everything I can to better help my son. But your story has been the first that has given me an in depth look from a person who is dealing with this disorder. Since my baby is only 2 he can not tell me what he is thinking and feeling so Thank You for letting me in to your thought!!!

  27. Darla
    August 6, 2010 at 8:36 am

    Cats saved my life when I was a kid. For many years, I felt that the only ones in the world who were happy to see me, and accepted me as I was, were our family cats. Without them I don’t know how I would have lived through it.

  28. August 6, 2010 at 12:41 pm

    Lydia, I love these “In Their Own Words” articles and I truly enjoyed reading your story. I have a 4 year old son with autism and everyday I am learning about what are the things that make him happy, the things that don’t, and where is the in-between. IT IS YOUR POINT OF VIEW, YOUR PERSPECTIVE AND YOUR ABILITY TO WRITE ABOUT IT ALL SO WELL THAT HELPS PARENTS LIKE ME UNDERSTAND MY CHILD BETTER. THANK YOU!

  29. Anna Diehl
    August 6, 2010 at 2:23 pm

    Lydia, you are a fantastic writer! You remind me of me – I was in my teens when I discovered that writing was not only my refuge, but also the one way I could actually express what I meant. I was good at it – still am. You, Lydia, clearly have a gift – eloquent, articulate, beautiful, meaningful… I so look forward to reading your first book – and I’ll absolutely be watching for more!
    Your message with this piece – yes! Yes!! YES!!! It’s what I wish I could’ve said to my dad when I was younger (not diagnosed, though friends have long noted tendencies); and what I’ve tried several times to express to him about my son (10, high on the spectrum). It’s his fear of what other people might think that keeps him in a place of not accepting… and it’s sad – mostly for him, though, because my son and I are happier than many families with 2 parents and no “special needs” child. (to which I want to say, “YEAH!”)
    I’m going to print your article and pass it along to my dad and his wife. Maybe they’ll read it, maybe they won’t, but I’m choosing to give them the opportunity to open up to possibility.
    Write ON, Lydia!

  30. Grace
    August 6, 2010 at 10:57 pm

    Lydia,

    You made my day (night too!). Thank you for perfectly articulating your list in writing. I would love to spend a day in my son’s world~ your world too!

  31. BW
    August 7, 2010 at 1:07 am

    1. I’m young adult with Asperger’s Syndrome. Also have hearing loss and use signed language.
    2. I have good reading skills, at my own pace. I understand you.
    3. Sometimes have trouble sharing my world and wish others can see it too. My signing can help because it is very visual way when my speaking words are not able to do it, or if just no English words, I can usually express myself in American Sign Language (ASL) as it is different.
    4. Sometimes I deal with my autism by posting signs on my door with options about how I’m feeling: overall today, and: how I’m feeling at the moment.
    5. I see how it can come in handy to let people know ahead of time about things about me. I like that idea, same as you here telling about the 10 things. Thank you. I see you expand on it nicely. I’ll try that.
    6. Yes, people asking questions about how I am is hard sometimes.
    7. I have a worker that I hang out with and do life-skills stuff with. She signs ASL too, so I can let her in my world. I recommend to our readers that they maybe try some ASL with their family, friends, workers, etc.

    8. This is my only question part: Do you have other suggustions for when I’m not at home? How do you tend to manage?
    9. Yes, cats are exciting creatures! I have much adoration for them and have one at my parent’s, whom has healed me many times during melt-downs and doesn’t ask me to change who I am. He accepts me and comforts me.

  32. Donna Mezynski
    August 7, 2010 at 7:15 am

    I am one of many grandmothers raising a grandchild. My grandson has Autism. It has been a struggle financially and emotionally to take care of him. Also, the fact that none of my family really wants him around…..they seem to be afraid that he may hurt one of their children. That is so not true.He is very compasiontate.We do not get invited to a lot of family functions. I find myself overly protecting him. He is a very compasionate child, but can get very angry. I do not know if he realises he is different. My love and compasion is overwhelming. If only people could understand.I love him dearly….and would not have it any other way.

  33. David H.
    August 8, 2010 at 10:57 am

    Hi – I have a question: what do “higher functioning” people with autism think of “lower functioning” ones? I’ve always had a sense that the higher ones don’t consider themselves in the same category, and may, in fact, not even consider them as having autism like themselves. Do the higher ones look down on the lower ones? Please be honest in your response.

    • EK
      August 22, 2010 at 6:51 pm

      That’s a somewhat odd question. I typed out an answer before I noticed the date on your comment. On the off chance you’ll see it, I’ll post it. Off the top of my head:

      I would probably be described by many as “higher functioning.” I managed to force myself through an undergraduate education (with plenty of spurts, starts, accommodations, and shutdowns), then working in a research lab, and am now starting graduate study in my field, which is frankly terrifying. That said, I’m accustomed to being perceived as either far more, or far less “high functioning” than I actually am, depending on the context in which others interact with me. The few things I do incredibly well allow me to compensate (incompletely, and at high cost) for those I don’t do quite as well (expressive/meaningful language, real-time information processing, self-care, among others), or seem to produce enough cognitive dissonance in others that they (mostly) turn a blind eye to the “weird” stuff. When I did tell a co-worker I was autistic, having worked closely with him for 6-7 months, he seemed about as surprised as if I’d told him my accent was due to having been born abroad (I did get a clear, though maybe inaccurate, sense that he’d managed to figure it out himself, by then). But this probably isn’t the right place to go through my life story, so I’ll stop.

      I don’t consider myself to be in a different category, but I don’t “think” in social categories, so I’m not quite sure what that means. As I understand it, there are various underlying similarities in cognitive processes, shared by people on the autistic spectrum. This is how I orient myself. I have no problem with calling myself autistic. This does not mean I think all autistic people are the same, any more than that all non-autistic people are the same, but I also think that should go without saying. That said, there are autistics who identify themselves as “high functioning,” and do in fact seem to consider themselves as belonging to a different category, for various reasons. I have difficulty relating to them on most levels, but I’m not sure what that really means in practical terms.

      I’ve come across autistic people who do look down on those they consider to be “lower functioning.” This has always come as a shock to me. Personally I find it both baffling and reprehensible. It’s probably unsurprising that I have even more difficulty relating to these people, though that should not be taken to mean that I think they belong to yet another different “category.” I’m simply unable to relate to them on some levels (something to do with ethics and basic perception). I suppose I have sufficiently variable skills, most of which utterly fail me in certain circumstances, that I’ve known the “joy” of being passed off as something less than human, and treated accordingly, as well as the somewhat circular effect this in turn has on my functioning levels (and so it goes). I also can’t really comprehend how someone who has (presumably) had any experience whatsoever with something like this could inflict it on others in turn. I could relate to most of the things Lydia mentioned in her post, to variable degrees, although again I’m not sure what that should indicate.

      Hope that made some sense, and was relevant (not sure).

    • EK
      August 22, 2010 at 6:52 pm

      Just saw the length of my reply – that should have been a blog post. sorry..

  34. Natalie
    August 8, 2010 at 4:20 pm

    Thank you so much for your list. I worry so much about my 14 year old Autistic son, and how his life will turn out. I worry that he doesn’t have friends like his 14 year old cousin. But in my heart I know all he needs is the love and understanding of his family.

  35. BW
    August 8, 2010 at 5:05 pm

    Queston maybe not to me, but for input sake:
    1. Personally, I don’t want anyone to “look down on” anyone else, regardless of status or diagnose of anything. I more just recognize what some of the feelings expressed seem to be. I can relate from reflection of how I feel at times. Yes, “high functioning” people with autism can have “ups and downs/good days and bad days”. One Friday a few weeks ago, I was felt absolutely miserable to face people. I just wanted space, nothing “going on” and my dog – (cat is at mom’s), that’s it. Lucky me, nobody pushed me to have dealings with anyone that day.
    2. I am “high functioning” but I know it doesn’t change that I do have autism, and I accept it at that.
    3. I’m thankful I’m where I’m at, but I know it could have been the other way around. I went through a lot of therapy and everyday life skills practicing to get so far. I still have meetings with my worker every few weeks or at least once a month.
    4. When I was little, “the people” said I’d be fortunate to graduate high school and that I’d never make it to college. I’ve passed high school with honours in grade 12! I’ve already been in college for 5 years now, passed 2 programs – prerequisites to the 3rd and final program – I’m in and working on it still.

    5. Lydia, do you have input? I’d like to know too. More please, if you are up to it.

  36. BW
    August 8, 2010 at 5:25 pm

    I forgot to add:
    1. On a very good day I will chat for hours, either what speaking/hearing I can manage, or signing/watching… often doing both ways in various degrees.
    2. Overall, I’ve been called affectionate and friendly. (Which is that I have more “extrovert/good” days than “introvert/bad” as far as “the people” are concerned.)
    3. At least at the end of any given day I will be tired and want bed. Some days being sociable can be quite positive but down-right exhausting. Know what I mean?

  37. Petra
    August 8, 2010 at 6:05 pm

    Oh, I LOVE it! Am copying this and handing out to people on behalf of my son. This is just what I need.

  38. MoeToe
    August 16, 2010 at 6:56 pm

    Thank you Lydia, you are awesome!
    Cats really are fascinating. Now that I read your blog, it made me realize I ignore my cat, so I will spend some time playing with her.

  1. July 30, 2010 at 8:18 pm
  2. August 16, 2010 at 10:26 am
  3. August 22, 2010 at 7:43 am
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