Home > In Their Own Words > In Their Own Words – Do You Have Autism, or Does It Have You?

In Their Own Words – Do You Have Autism, or Does It Have You?

This “In Their Own Words” is by 23-year-old Dave Beukers, who was diagnosed with high-functioning autism in 1990. Dave serves on the committees of the Los Angeles and Orange County Walk Now for Autism Speaks events. He is a musician and a graduate of Chapman University in Orange, Calif.

I know it’s very much the standard terminology, and for all technical intents and purposes it’s probably correct. But I’ll admit I get a bit irked every time I hear that someone “has autism.” It’s a seemingly innocent phrase, and I know that no one thinks much of it, but I can’t help but dissect its connotations.

When one has something, one can “unhave” it just as easily, as it were. Say I have a ball, if I throw it away I no longer have a ball. It’s gone, outta here, sent to oblivion in my mind, and it no longer affects me or is my problem.

I find it interesting, a bit absurd even, that we use this same verb to talk about the autistic condition. It’s as if I were to say that I have “Caucasianism.” I could immerse myself as much as I like in any culture and become a functional member of that culture, but I haven’t really altered my DNA or my skin color. At the end of it all, despite the fact that I could be born in Japan, speak Japanese and celebrate the Emperor’s birthday every year, I’m still white. That is what I was given to work with, it’s a part of who I am.

“Having” autism, stretched to its extreme meanings, has kind of unfortunate implications. It implies the condition was put upon us solely by an external force. It presumes that taking the condition away, i.e. being typical, would make us unequivocally better, and it’s ever waiting for the “cure,” the magical panacea that will make everything hunky-dory.

Then again, it’s really all in how you look at it. For me, there was no real cure. It was simply work, time, and experiences that made me the person I am today. Sure, without autism, there are struggles I wouldn’t have had to endure. But I’m glad I did, and still occasionally continue to. Little by little, I learned to shove stimuli to the back of my mind, to make eye contact, to talk about something other than my favorite books, to read the nuances of conversation, to infer what someone is really thinking. I’m still not great at body language, among other things, to be honest. But some of my best qualities and personality traits are the direct result of my autism as well. I couldn’t imagine my life without autism. And I wouldn’t want to.

To me, it is not something I HAD and got rid of. It is something I AM and learned to channel.

It is this distinction in my mind between “having autism” and “being autistic,” this simple change in turn of phrase, where I personally determine my attitude towards it. As a possession, it seems simply thrust upon me as an  unnecessary burden, one which I would be better off without. As a state of being, it is a lifelong journey, a beautiful cycle of try, fail, and try again from which I learn as much as I can, wherever that ends up taking me. It is this thought that has turned me from a victim to a victor and given me hope for my future, because as long as I “had” autism, autism actually had me.

Now I don’t expect to shake up everyone’s personal lexicons here, but I hope you are as intrigued as I am by the difference a word can make.

“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. Andrea Payne
    August 20, 2010 at 5:59 am

    Well said Young Man. While I am not autistic, I have definitely been autisticized by my young son.

    I am just as literal, concrete and semantic as he is. I am that way out of necessity – it’s what he needs me to be. Many years ago I took a very strong stand that he was a child with special needs. The child would always come before any medicial or other condition. Then I learned about Autism. I sometimes offend others with my not sp PC morbid sense of humor about being Autisticized. I have an Autistic son.

    Why does the Autism come first? THAT is a part of WHO he is not WHAT he has.

    I stopped trying to ‘cure’ or ‘fix’ him after reading Autism for Dummies years ago. Now I strive to teach him how to use what God gave him. If he grows up and in 13 years writes something like you just did – I will have fulfilled my Purpose for him… I hope you and your parents are proud because you should be!

  2. Diane Tufts
    August 20, 2010 at 7:42 am

    Thanks for that. I respect everybody’s right to view things in the way that best works for them, and I certainly see how families who have members with particularly difficult challenges see the cause as a condition that needs to be cured. For them, the costs outweigh any positives that might also be there, and they need for this to get better. I want that for them, too. Still, my son is very high functioning, and despite the extra difficulties (which feel particularly challenging today), for him, autism is part of who he is and how he interprets the world. And I do generally find myself saying that he “is autistic”, in the same way that I say that he is intelligent and funny. I have no desire to change who he is. I just want for him to have less anxiety in trying to interact with everybody else.

    • Anna Diehl
      August 20, 2010 at 2:31 pm

      Go Diane! I am there with you – in fact, since my son was in Grade 2, I’ve been saying he’s GIFTED WITH AUTISM… even rewrote a kid’s book as such before it was read to his class. What you’re doing – helping him learn how to interact without the anxiety (etc, of course) – is essentially what I see as our job as parents, period… it’s just that ours (as in yours and mine) has different requirements. And for accepting that, I applaud and cheer you on – and me, and everyone else! YAY for us ALL!

  3. August 20, 2010 at 7:59 am

    Thanks for this story. I have the same attitutde. I can identify difficulties that can be explained by autism and learn to cope with them as best as I can, but I cannot become neurotypical.

  4. Patti
    August 20, 2010 at 9:38 am

    I go through this same thing with my son. I dislike saying he “has autism” it just doesn’t sound right. But I could never think of a better word. Thank you for giving me the words to correctly describe my son.

  5. Ed
    August 20, 2010 at 9:44 am

    How can one be tested for autism?

  6. August 20, 2010 at 9:45 am

    You wrote a very interesting article. I had never thought of it as “having” instead of “being” for my two boys. Some really good food for thought. Thanks for writing.

  7. August 20, 2010 at 9:49 am

    I appreciate this article. At 13 years we learned our son is autistic. I value learning about the autistic adults point of view. It helps he understand my son and educate others about the diversity of others. Different is OK!

  8. protective mom
    August 20, 2010 at 10:00 am

    While I respect your decision as an adult to define your autism as you want I must say that I hold a different perspective as the parent of a 6 year old high functioning child who is on the spectrum. I don’t want autistic to define all of his behavior or who he is because sometimes he can just be a creative, contrary, loving, naughty, smart, sly and silly little boy – and sometimes none of this has anything to do with autism. When he is old enough to decide for himself I hope that I have taught him well enough to define himself first as a good man.

    • Dave Beukers
      August 20, 2010 at 11:23 am

      O.P. here, and I absolutely have to agree with you. Autism does not a whole person make.

      • Anna Diehl
        August 20, 2010 at 2:45 pm

        Perspective is Everything – and it makes all the difference. The greatest challenge (problem) from my perspective is not borne of my child. Rather, it comes from society’s interpretation/view of my child – which is ultimately borne of ignorance and fear.
        I say, how wonderful it’s going to be when “society” stops looking for the CAUSE in order to find a CURE and instead EMBRACES every so-gifted individual for who they are, AS they are.
        Now that’s where I wanna live!

  9. Rachael
    August 20, 2010 at 10:02 am

    I am inspired by you and appreciate you putting everything I think into words. You are amazing and articulate. I am a mother of an autistic little girl (6) and could not imagine our life without the joys and triumph of autism.

  10. Mary McK
    August 20, 2010 at 10:05 am

    The reason I very much identify with what you are saying is that I have a 5 year old son who is Autistic, but is high functioning, and seems to be on track to enjoy his life like other people. This is all we can ask in life: regardless of what station we are at, whether it is in sickness, health, education, marriage or death: that we enjoy our lives.

  11. Geena
    August 20, 2010 at 10:12 am

    I highly agree!

  12. Patty
    August 20, 2010 at 10:31 am

    Thank you for your perspective. I am guilty of describing my son as “having” autism. I feel uncomfortable say he “is” autistic because it is not all that he is. So I am torn. But you make a very good argument. Thanks for making me think.

    • August 20, 2010 at 12:15 pm

      I’m still thinking on this distinction of describing one who ‘is autistic’ or ‘has autism.’ I have 9 grands, 2 of which are autistic or have autism – to differing degrees on the spectrum. Patty, I like the phrase “because it is not all that he is.” To me a person is a whole person first, one who has ‘autism’, ‘cancer’, ‘MS’, ‘ADHD’, ‘cerebral palsy’, ‘heart defect’,’add your own’. I’ll be discussing this with others – thanks for making us think on whether this is grammatically correct or not.

      • Anna Diehl
        August 20, 2010 at 3:09 pm

        And how glorious it is when we can dispense with even thinking about what is grammatically appropriate, so we can instead simply enjoy the love and light of those gifted with autism!
        Yay for you, Karin – the fact that you even *accept* that you have autistic grandchildren is of tremendous benefit. The fact that you are considering the grammatical aspect leaves me feeling a little envious for me & mine, happy joyous for you & yours! Go Karin!

      • August 26, 2010 at 1:55 pm

        Karin, you demonstrated part of his point by linking autism with diseases one has rather than personality traits one is.

        Dave, very interesting. Some of my musings on the topic here.

  13. Debbie Couillard
    August 20, 2010 at 10:40 am

    Dave,Thank you so much for sharing!My nephew is only 7yrs old,high functioning as well,with apraxia (lack of verbalization).He is doing well with verbalization now with the great therapists and teachers hes had in his life.I love when I hear from adults with Autism because it allows me to understand better what I need to do to help him and our family flourish.So Thank You so much!!

  14. Linda Geist
    August 20, 2010 at 10:55 am

    you give me hope for my sons future… thank you :)

  15. Christi
    August 20, 2010 at 11:01 am

    I never thought of it that way. My son is autistic. I think that is the first time I have said that. I think, to me, saying “he has autism” felt better because, as you said, maybe he could not have it one day. But I thank you for your take on this matter and will not say “he has autism” anymore. Because you are right and our words make a difference.

  16. crescent leposa
    August 20, 2010 at 11:02 am

    Thank you so much for sharing! My 7 year old son is autistic. He is a wonderful happy little boy and i have been told that I should always say that he has Autism. But I have felt the same way you do and I hope that your story will make others think. God Bless You, you are a wonderful person and it sounds like you have made the most out of what life has given you. Thanks again.

  17. August 20, 2010 at 11:51 am

    Thank you so much for sharing your thoughts on this! I do describe my granddaughter as “having autism” and don’t feel that either way is wrong or insulting. I really enjoyed reading your views, especially as you have personal experience being autistic and have given it a lot of thought. Your words have given me a chance to consider this subject from another perspective, which is great. I hope my granddaughter, who is six will one day be able to share her thoughts with me as well.

  18. Michi
    August 20, 2010 at 12:03 pm

    Thank you for such a thoughtful post. I have always referred to my daughter as autistic and have been “corrected” by others into saying she has autism, something that never sat well with me. But this will help me remember is she grows up and chooses to refer to herself as a person with autism, that I should support whichever way makes her feel more in control and at peace.

  19. Raphael Sason
    August 20, 2010 at 12:05 pm

    Thank you for emphasizing that semantics and usage of language defines us as much as anything else . As father of 2 autistic adult sons, ages 31 & 29, and 3 neurologically typical daughters, ages 16 – 22, I can’t agree more. Autistic is what my sons are, just as my daughters are blond, and not diagnosed with blondness. My sons are not broken, and they don’t need to be fixed, but just understood, accepted, supported, and our jobs as parents should be to unwrap the gift box they came in so we can appreciate their unique gifts.

    I found it interesting that in the postscript to Dave’s post, the Autism Speaks tagline still says: “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.” Perhaps change comes slowly to those who see autism as a “condition was put upon us solely by an external force”.

  20. NJ
    August 20, 2010 at 12:36 pm

    I’m so confused, I was told saying Autistic is offensive to the Autism community and that having Autism was the correct terminology to use.

    The word Autistic is very negative sounding to me so I don’t like it or use it. My girls may not know what Autism means but I openly discuss it around them and with them. They are too young to understand but I don’t want them to ever associate their Dx with anything negative. If you are overweight do you walk around only describing yourself as obese? No, it would be hurtful and it’s not all you are as a person. You could be an avid reader or a mother or a Lawyer But having a weight problem is only one small part of who you are. That’s how I feel about Autism, it’s one small part of who they are. It’s a Dx they have, it should not be used to describe them (as in they are Autistic). I don’t walk around introducing myself as a migraine sufferer but I will admit to having migraines. There’s no shame to a Dx but no one should be labeled by what they have. That’s why I am open about it, to help lesson the impact of the words or Dx. But I do not walk around letting everyone know wherever we go that they are on the Spectrum. Just how I feel.

    • Lisa
      August 20, 2010 at 5:32 pm

      Well said, NJ

    • EK
      August 22, 2010 at 7:48 pm

      To me it appears that the word “autistic” is more offensive to non-autistics than it is to autistics. I may be wrong about this, but regardless of whether my impression is accurate, I think that the preferences of the latter should take precedence over those of the former – they are the ones being described. If you consider autism to be something uniformly terrible, then your perspective makes sense, but other people (including those who are autistic) may not agree with this, and this may not be an accurate view (which is not to say that everything is ‘hunky-dory’ as is). Speaking only for myself, I would disagree with the notion that autism is a small part of who I am (it is certainly more intrinsic to me than my gender or my ethnicity, etc., and it is nothing like having a migraine or being overweight). I don’t announce it to strangers, even if I can’t consistently (if ever) pass for normal, but this has nothing to do with shame. I don’t volunteer other personal information unless asked (or unless it is appropriate to do so), either.

      • Cerine A Q
        August 23, 2010 at 11:30 am

        Well said EK… i totally agree.

  21. Debbie Abitz
    August 20, 2010 at 12:58 pm

    Well put.
    I believe most people under estimate the power of words and language.

  22. August 20, 2010 at 1:02 pm

    Dave is an adult. He can and does advocate for himself and certainly has the right to refer to himself as he prefers.

    Parents, medical folks, media folks, and citizens in our communities who do not have autism or another developmental disability would do well to stick to person first language. It is respectful, generally accepted and the better choice. Folks are not their disability unless they choose to say so. Being a parent does not entitle us to define our children except in those terms which help encourage respect and the understanding that our sons and daughters are more like everyone else than they are different. First, do no harm.

    • protective mom
      August 21, 2010 at 8:46 am

      Exactly – there is a big difference between how a person speaks about him/herself and how you refer to someone else – even your own child! People first language until they can speak for themselves!

    • EK
      August 22, 2010 at 7:56 pm

      Respectful to whom? As I note in my comment to another thread above, I think that people should be referred to as they wish, not as those around them feel more comfortable doing. Whether you use person-first language or no, you are defining people. I think that it would be a good idea, therefore, to find out what most autistic people prefer to be called, and to err in this direction, instead of assuming that you know the correct and respectful way to refer to someone (and that nobody minds) until told otherwise.

  23. Joyce Bulifant
    August 20, 2010 at 1:10 pm

    I do agree with this young man. I am dyslexic. I don’t have dyslexia. It is not a disease, and you can’t catch it. It is a condition. I believe it is the same with autism. I have a wonderful grandson who is a joy. He is first my grandson and sometimes he acts a little differently then typical children his age and that is explained by the fact that he is autistic.He has been very lucky to have special tutoring that has helped him overcome some of his differences. But, one thing will never change, that is the loving little guy that he is and the happiness he brings.

  24. August 20, 2010 at 1:26 pm

    This was so well explained, and a brand new way to see into the “debate”. I loved the analogies, and think there are some very valad ideas to consider here. It is of course still just personal preference, because words do come across so differently with all of us. I do like how this young man is approaching his Autism, with such a positive outlook. He is a good role model and I loved reading his blog.

  25. Imagine
    August 20, 2010 at 1:46 pm

    I intend to bookmark your article and send it to anyone who chides me when I say my 5 yo son is autistic. To me, ‘having autism” makes it sound like he has a disease, which he does not. He is autistic in all its glory, which to me is a wonderful, goofy, neurodiverse way of being. Of course he struggles at times, and of course I wish the world was more accepting. I worry more about all this talk of genetic testing and finding a “cure”. My son does not need a cure – he needs love, acceptance, understanding, and encouragement to be, in his words, the “flap-happiest” boy in the world.

  26. andrea
    August 20, 2010 at 3:19 pm

    Can of Worms, huh? I “used to” say my daughter is Autistic – but then that seemed to over-shadow all the other things that she is and will become: I prefer she “has autism”, because she IS so many other things, an honor roll student, a sister, daughter, cousin, niece, Grand-daughter, Girl Scout, 4-H’er, beautiful, smart, a Cheer-Leader and the light of my life! As an adult, “Aspies”, “Autistics”, “Engineers”, are free to use what-ever terminology they so choose. Just remember, first and foremost, we all are a “Person!”

  27. August 20, 2010 at 4:17 pm

    I see. So, whereas other people would say they have autism, you prefer to think conversely. That helps you (and even others) think positively about yourself.

    • EK
      August 22, 2010 at 8:00 pm

      I don’t think I agree that your observation is warranted (and I am not speaking for anyone else, including the OP). I think saying that someone is “autistic” is more accurate, not more positive, or more negative. I also think this is important.

  28. Theresa
    August 20, 2010 at 7:24 pm

    Beautifully said. I couldn’t agree more.
    Other parents have argued with me, saying autism doesn’t define who your child is. I do agree with them that each child is an individual first – diagnosis and disorder come second. However, I’ve always looked at it as similar to saying someone is ‘diabetic’ or ‘dyslexic’, rather than ‘has ….’. Autism is the most extreme example, but in each case, a persons life and lifestyle is strongly dictated by the disease and/or disorder. To some extent loved ones are also impacted. Without it, much of what you are, think and feel, would be different. So, yes, it does have you.

  29. Bobby
    August 20, 2010 at 8:25 pm

    Not only was this essay a joy to read (I loved it!) but the comments were all right on. I can only wish & hope for my son to able to articulate his inner thoughts & wishes as well as you do.

  30. Amanda helinski
    August 20, 2010 at 9:11 pm

    Wow! Awesome- I am the mother of an amazing boy who’s Autistic- and I have a similar argument with a friend of mine who’s also a parent- of a child that’s also autistic and they say ” a child with autism” because he’s a child 1st an I disagree, because i believe my son’s autism is as much a part of him as being male- or me being a woman- I don’t refer to myself as a female,mom,human! I believe that my son being autistic effects everything in his view of the world! An that’s a wonderful thing! I wouldn’t change a thing!

  31. michele p.
    August 20, 2010 at 10:06 pm

    Bravo for you! My son is 11 yrs old, and also on the spectrum. I, like to refer to “autism” as this because it truly is a large spectrum to fall within. As with any typically developing child, each one is different. Their own mannerisms, their own quirky things they do, basically their own personalities. Kids on the spectrum may share the same learning difficulties, or sensory issues, even down to the tantrum behavior. However,ever heard of just ONE bipolar child? Just ONE adhd child. They, also share same feelings, thoughts and behaviors. So it seems that everyoneout there, spectrum or not, has someone they can relate to. God made us the way we are for a reason, we have to take what we are given,and be the best that we can be in this life. My son, is brilliant, funny, and boy oh boy , HE is one of a kind. There isn’t a day that goes by, that he doesn’t make me laugh at least once! Point is,Dave, YOU are a shining example of hope for all that have let autism define who they are, or parents that let it define their children. You should be proud of your hard work, struggles, and confidence in yourself to become the man you are today! Thanks for that, Dylans Mom

  32. Cyn
    August 20, 2010 at 10:39 pm

    I think it’s fine if an individual wants to refer to themselves as autistic, rather than having autism. However, as the parent of a 19 year old son, who came to us through adoption and has autism, I would prefer that the larger community, including myself, not define him in any way. I would not refer to him as my adopted son or my autistic son. I try to adhere to People First Language. Though I’m sure there are many sources you could read, here is a link to the Wikipedia article which provides a pretty balanced view: http://en.wikipedia.org/wiki/People-first_language

    • August 21, 2010 at 5:12 pm

      Cyn I agree! We must respect each other’s personal preference and there is no right or wrong answer. Special thanks for the link. It validated my choice of words when referencing the special needs of my children. I have 2 daughters and 1 son. My 14 year old daughter has scoliosis, ADHD & cerebral palsy (cause for mild cognitive, physical, social delays) but she CAN read/write, walk/run and is a social butterfly. I have never denied her diagnosis but unless you have an immediate need to know, I don’t describe my daughter as disabled. Needless to say I don’t describe my 8 year old daughter as typical or my 5 year old son as autistic. They are just my kids with different strengths and as many challenges:-)

  33. Cerine A Q
    August 20, 2010 at 11:14 pm

    ‘Autistic’ is what a nonautistic person isn’t… like we say angry, calm, genius, talkative, smart, social, lazy, creative, active… i think one can say ‘autistic’… its not about ‘definition’ its about ‘acceptance’… its part of who some people are & like any other part of them they could (with their acceptance) apply it for their own good & even for the others good… we are all human yet we are all different & special in many ways… autism isn’t a disease its just one way of being different & special… if we realised that well, we will never have a problem saying ‘autistic’, like we don’t when we say ‘creative’ or ‘genius’ or ‘social’…
    (To me) Dave simply accepts it & he is proud to SAY ‘i’m an autistic person who’s constantly trying to be a better person in all aspects’, INSTEAD OF SAYING ‘i have autism, otherwise i’m a better person in all aspects’…. Please, notice the difference… by saying ‘i have autism’ you are just taking that part away from the rest of you & yet still ‘have’ it… by saying ‘i’m autistic’ you’re just accepting the whole you along with what makes you special.

  34. Carol Strait
    August 20, 2010 at 11:22 pm

    This is a beautiful statement of what it is to be autistic by someone who knows. It is an encouragement for me as a grandparent of a 9yr old autistic boy; to hope for the day when he will be able to become all he can be as an adult. It seems to me that each day he grows closer to that goal. After a lot of help from therapist, counselors and teachers he is now mainlined into a regular school with “normal” kids. With their help he is still working on some negative situations in his life. We as his parents and grandparents are standing side by side with him as he learns and grows. He is the joy of my life as are my other grandchildren and with God’s help we will come out better than when we started.

  35. Brett
    August 21, 2010 at 2:06 am

    I dont like saying I have autism or that i am autistic. I feel like it owns me when I say it like that and I dont like that. I say that I struggle with autism and even benefit from autism when it comes to the savant skills. however, dwelling on this for too long is splitting hairs.

  36. Andrea Payne
    August 21, 2010 at 7:09 am

    My purpose is to give ALL of my children what they need to enable them. It’s my JOB to do whatever it takes to give them everything they need so that they can one day be INTERdependent as opposed to INdependent. My only chance of doing that is if I see things for what they are, give myself 5 minutes to say why me or why them, then get over and get on with it. Because what matters isn’t what happens or who does what to who – what matters, is what you do with it.

    My son has Classic Autism and his Spectrum characteristics are wide ranged across the charts. Therefore – I MUST always make a part of what I see be the Autism, whether I want to or not. It is a component of WHO he is – it does not define in any way WHAT he is. He is a boy. He is an AUTISTIC boy. If I FAIL to provide the support, love, acceptance, etc. that he NEEDS so desperately due to the Autism – I have left him out there feeling abandoned in a world where the components of his Autism characteristics are not met with and dealt with on an hourly basis.

    So though it still makes me uncomfortable at times when I think about my STAND – My son is Autistic and *I* have been Autisticized. :)

  37. Donna Foster
    August 21, 2010 at 7:42 am

    I like what Mr. Beukers said, as it is from the prospective of being an Autistic individual. I hear many things about Autism from others who are not and it makes me wonder how they know. I have a “mildly Autistic” 9 year old son. I put it in quotes because I was never told where he ‘functioned’ on the spectrum. I would say that he isn’t high but he is definitely not low…so I guess in the middle.
    I wonder when, at what age, Mr. Beukers discovered that he is Autistic? And how that discovery came about. Did his parents and/or teachers explain this to him? My son doesn’t know he’s “different”, this is just how his life goes. I wonder at what age he will realize, if he does, that he faces some challenges that others wont have to, and what I can do to help help him when that time comes. I wonder how I could find out if there are other Autistic people who are willing to share with and lend guidance to younger Autistic peers, on how they continue to grow and succeed every day. It would be nice to have other Autistic individuals teaching life skills to those on the spectrum…as life really is for them and not how a non-Autistic person feels it should be.
    I hope my son grows up to be as wonderful and successful as Mr. Beukers.

    • August 21, 2010 at 7:22 pm

      I’m curious to read answers to your question: “at what age, Mr. Beukers discovered that he is Autistic? And how that discovery came about.”

      My oldest daughter (13) has a mild/moderate case of cerebral palsy (cause for mild cognitive, physical, social delays) and has been in a maintream classroom setting. In 6th grade we noticed she was having a hard time keeping up with the modified curriculum and has made minimum progress since. She understandood that she was “different” and how her limitations affected the way she participated in certain activities. In 7th grade she was super excited about preparing to apply for the top schools in our city and that’s when we realized that she did not understand that these same limitations were going to prevent her from even applying to the schools.
      It broke our heart but my husband and I had to sit down and explain this to her. She was devastated to learn that not ALL H.S. offer services to support her special needs. She will start 8th grade in a few weeks and is now focused on the options she does have;-)
      As for my son (5) who has autism… He’s in a self contained class and only time will tell!
      Happy Living!

    • Dave Beukers
      August 21, 2010 at 10:00 pm

      Hi, thanks for reading, and to answer your question, I was about 3 years old when I was diagnosed. I went through most of my life not knowing a whole lot about the technical aspects of my condition, my parents took much the same route as you in trying to not emphasize my differences and just letting me be me. When I did start caring enough to realize I was different, my family was always accepting of me, which I’m grateful for. I think it was maybe about when I started to notice girls that my place on the social bell curve started to bother me. (Doesn’t it always?) It took some years of wrestling with my self-esteem before the epiphany came that I can’t be bothered by things I can’t change.

      I wonder how much I could help younger autistics, I feel that so many of my own milestones came about not from therapy or education but because I screwed up royally in some way that day. (To quote the film Chitty Chitty Bang Bang, “From the ashes of disaster grow the roses of success.”) I don’t know they could get any advice from me about being social that they couldn’t get from a typical person. Perhaps I could frame it from my point of view, but would that help? I’d sure be willing to try!

  38. Diana
    August 21, 2010 at 11:19 am

    I loved your story and point of view. I have a 3 year old son who is Autistic. I can’t imagine the lessons our family would have missed out on had he not been born into it. I love that you said it isn’t something you can “unhave”. I totally agree. Just because you say someone “is Autistic”, doesn’t mean that they aren’t many other wonderful things at the same time. My son is Autistic, and sweet, and talented, and loving, etc…And obviously, you have so many other great things about you as well. To say you are Autistic shows that you accept and are grateful for every piece of yourself, even if considered atypical by the world. Thank you for your optimism. You’re an inspiration.

  39. Lindan
    August 21, 2010 at 1:12 pm

    I like the term being an “autist” rather than autistic or having autism. How about the following terms.. Being with child or pregnant? vision impaired or blind? virtically challenged or short? person in politics or politician? Dances with Wolves or??? In all cases we are more than our labels.

  40. Holly
    August 21, 2010 at 3:27 pm

    Dave – You can’t unhave something like cerebal palsy but people say they have cerebral palsy. You can’t say I am cerebral palsic – it doesn’t make sense.

    Brett – Would you prefer to say you are an autist instead of saying you are autistic or have autism?

  41. August 21, 2010 at 6:38 pm

    I always try to consider other people’s feelings and this was a huge eye opener. When a conversation revolves around special needs I will ask what term others prefer.
    I don’t personally like the sound of the word autistic and when the need to discuss my son’s diagnosis presents itself, I will continue to say he has autism. In the same manner I say my daughter has cerebral palsy, scoliosis and ADHD. I definitely don’t use their diagnosis as an adjective to describe my kids. I can go on about what a blessing it is to have children with special needs, etc, etc. Instead I openly admit that there are times our lives feel like a living hell. I would love for someone to figure out the cause & eventually prevent the outbreak of autism we are seeing. Until then, we spend our energy advocating for our kids & creating awareness by exposing our kids to the world. In our household we all have different stregths and many challenges/limitations but we live to our fullest ability.

  42. Cerine A Q
    August 21, 2010 at 10:47 pm

    Wooow !! reading all these comments !! ”the power of a word” , i just find it AMAZING how a word or a phrase would change the entire way we think of (or feel about) something… i believe no one is wrong, everyone has a point here…
    & as long as its going to keep you & your beloved ones positive , confident & most importantly awared of how valuable & effective a human is (with all what he ‘is’ or ‘has’) just use the term that you prefer…

  43. Barbara Pons
    August 23, 2010 at 1:47 pm

    I totally agree! My son is also high functioning and I just say that my son has social skills challenges and that he is on the spectrum. I don’t like to say he is autistic or has autism. Not too sure why. Thanks for sharing!

  44. NueZol
    August 23, 2010 at 7:14 pm

    Is there a word that means “a component of the entire description”?

    Then, we could say someone has a component that is autistic. That would get away from “having” and get away from autism being “the full identify”.

    We have this concept in computer programming. Object oriented programming involved inheritance (the full set of characteristics). But a related type of programming, UML, uses components. They are modular pieces that are put together to make the whole. Sometimes a component is relevant, and sometimes it is not, to the behavior or action taking place!

    • EK
      August 24, 2010 at 2:17 pm

      Umm.. I identify as “Russian” and “female.” I doubt that many conclude from this that my “Russianness” and “femaleness” are relevant to everything I do, say, and think, or that they comprise my “full identity” – or that it therefore may be a better idea for me to find a way to more explicitly refer to myself as a person with (sometimes irrelevant) Russian and female components.

  45. Stephanie
    August 30, 2010 at 8:52 am

    WOW! WOW! WOW! My 2 year old son is Autistic and while I never really felt comfortable using the words “My son has Autism” I still thought it and reading this has really put a whole new look in it for me. He has only been diagnosed for about 2 weeks and want you to know you have made it so much easier to handle.

  46. September 1, 2010 at 11:19 am

    Thank you Dave. I am grateful that you wrote this and give parents of autistic children (like me) an opportunity to hear how you perceive these labels.

    No one word can define any person.

    I would be curious to know your definition of autistic.

  47. September 14, 2010 at 11:18 pm

    Thank you Dave for your very articulate explantion though I disagree with your conclusion. My son is a boy, my son has dark hair, my son is tall. These are concrete. If I say he is autistic, then I feel like I am defining him as just that. He has a disability, autism. I don’t want to say he is disabled, he is autistic. This feels like I am defining him solely by his disability. He is a person first. His disability is second. But no matter how you word it, he is my son and I love him. It doesn’t matter what he has, what he is, or what he’ll be, he’ll always be my Jacob.

  1. August 20, 2010 at 4:19 pm
  2. August 20, 2010 at 8:11 pm
  3. August 27, 2010 at 7:12 am

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