Are You Kidding Me?! Why Autism Positivity?

There’s been a lot of fussing and name calling in the ASD blogosphere of late.  It is centered not upon vaccines or biomedical treatment but on the call by some – including Thinking About Perspectives, a blogger group I am a member of – to bring a positive light to autism.  A lot of folks are embracing this view, but there are many who are frustrated, sad, and angry who are feeling alienated because their feelings don’t quite match up with all this positivity.And that makes me sad.  Because I hate the thought that people are out there, once again feeling like others are negating their own emotions.

Speaking for myself, I don’t think autism positivity is about denying the very real challenges being autistic or raising a child with autism presents.  If it were, then I’m afraid I would have to side with those who are against it.  The cold hard truth about autism is that each person affected by it is dealt a different set of cards.  And some of those cards are poor hands indeed.  What I mean by that is that life is certainly going to be easier for those who can communicate with others.  It is obviously going to be more pleasant for those whose sensory issues do not overtake them in a vicious assault every time they leave the house.  Of course it is preferable to be toilet trained than not, to be able to read than not, and to have the ability to make your own choices.  Yes, I want those things for my child.  I’d be crazy not to.  Yes, I am terrified he might not.  Because not having the freedom to direct your own life is a loss – and one I would have every right to grieve.  Without some sanctimonious autism cheerleader telling me how very happy I should be about it.

Which brings me back to my point.  Autism positivity is not a vast conspiracy to make everybody autistic.  It is not an attempt to discourage therapies that might improve the quality of lives affected by autism.  And it is not a movement to create guilt in parents who are struggling with very real issues related to the most severe cases of autism.

Yes, some of the hands dealt by autism have been tough.  But not all of them.  We call it a spectrum for a reason.  There are a very large number of people on that spectrum whose lives are fulfilling and happy.  People who have learned to navigate the neurotypical world.  Children, students, parents, spouses, coworkers, teachers, family, and community members.  People whose very unique perspectives and talents have contributed to our world.  And even some extraordinary minds who have helped to make it a better and more beautiful place – scientists, artists, engineers, and other great thinkers.

And here’s the thing. Those folks have to walk around hearing about epidemics, cures, gene therapy, social dysfunction, and disappointed parents.  They have to endure public discussions on their sexuality (or lack thereof) and answer personal questions on whether or not they understand the concept of love.  They know that perception of autism runs from people equating it with mental retardation to thinking it a “soft” condition that doesn’t even exist.  And the only people representing them on TV are geniuses or superheroes.  Given those roles from which to choose and identify with, can you blame them for wanting to present their own view of autism?  To want to shout from the rooftop that they are proud of who they are?  That they like themselves just fine?  That it is okay to find humor in their differences and to enjoy some of the perks of being autistic?  For there are perks.  And they have a right to like those perks.  They have a right to like themselves.  They have a right to not feel like a walking tragedy.   And they have a right to demand the world not treat them like one.

I joined the Autism Positivity 2012 Flash Blog Event because I want to send a message to the young people who are still fighting in the trenches of acceptance.  Those kids who get up every day and battle loud, smelly, crowded hallways just to get to classrooms filled with students and teachers who don’t understand their differences and don’t appreciate their contributions.  I have seen those tears throughout my years of teaching.  I have hid them in back rooms of the library to cool off tear-stained faces with cold cloths.  Kids whose peers, teachers, and even family don’t begin to understand how very brave and tough they have to be to function in what is a daily battlefield for them.  All while being told that there is something terribly wrong with them.

Yet I don’t even know if my child will be “high functioning” enough to even have this to look forward to.  I hope.  And, yes, I pray.  But his cards are still face down on the table.

No, I am not in denial.  I have seen severe autism.  It is still way too early to know what choices my son will have available to him.  But even if the dreams I have for him are not realized, I refuse to not take joy in what I have in him.  I refuse to not be amazed by the wonders of his mind.  I refuse to allow my own grief –which I confess to experiencing every day – to cast a shadow on his love for life and his pride in himself.  Every human being on the planet deserves to be celebrated and cherished – not matter what challenges they face.

For I know that the roots of his self-worth are reflected in my eyes.  Mine.  And, no matter what, I want him to like what he sees.

If you would like to participate in the #AutismPostivity2012 Flash Blog Event, please visit our page.  You don’t even have to be a blogger!  :)

46 thoughts on “Are You Kidding Me?! Why Autism Positivity?

  1. Donna

    Hear, hear!

    Being positive doesn’t mean we’re ignoring reality. It means we’re picking out the good stuff and doing the best we can in life…no matter where on the spectrum our loved ones fall.

  2. Sarah

    I love this blog. You convey so much of what I think on a day to day basis. And you are right – everyone deserves to be cherished.

  3. Lelia Rose Foreman (@LeliaForeman)

    Gee, I’d like to be a superhero. Guess I’ll have to settle for being a supernerd.
    And I have to settle for my daughter being happy with the life she has instead of the life I worked so hard for her to have and she rejected. No, I’m glad she found her happy little niche.

  4. Victoria Helen Maroney

    Great post!! Thank you. You manage to show both arguments AND the common ground :o)))

  5. Aspie Kid (@AspieKid)

    Great post!! I think sometimes that I was much better off than autistic kids today because of when I was born. I had to deal with sensory issues and being bullied and all that, but I never had to deal with the social stigma of being “autistic”. I knew very well that I was different but I think it was much easier for me to be proud of my differences having grown up before most people knew what autism was. I had no negative label, only some different traits. In the late 1960s and early 1970s, pediatricians and teachers knew that some kids were a little unusual, but they still called kids like me “normal”.

    Also, I have definitely noticed an increase in negativity, and often outright hatred, towards autism in only the last few months. I think this means we are reaching a wider audience. Last fall, people who blog about autism would post positive messages and everyone was accepting and positive about those messages. But that’s because we were preaching to the choir. The only people who read autism blogs were other autistic people or parents of autistic kids. I think a lot of the negativity lately is because our messages are getting out beyond our little online autism community. I think of autism acceptance as a social movement, and when social movements become contentious that only means the movement is gaining ground. We have a long way to go.

  6. Linda @ Lemon Drop

    I absolutely loved reading this today! Thank you for sharing. I am all about focusing on the positive of any challenging situation. It isn’t about denial, it is about realizing that energy spent on the negative is a pure waste of time. We can be so much more sound-minded and think outside of the box when we work with a positive mindset!

  7. @AutismMommy_ca

    Guilty! I am a positivity monger. I’ve learned to embrase the good, live in the moment, be the change I want to see, etc. etc. I also tend to avoid negative situations, people, and attitudes because I don’t want to feed that beast my hard-won energy. It doesn’t mean I don’t know pain or heartache, or that I can’t relate to parents who are beyond frustrated (I go there too!) I know it’s in my son’s best interest to believe that life is predominantly awesome. Great post!

  8. Ann Burt

    In theory I agree with everything in your post. (As always, stated quite eloquently.) But . . . I’m weary. Weary of family and friends who just don’t get it. Don’t get how hard it is – for my son, for his immediate family. Don’t get that at 21 we still don’t know how much he will be capable of – will he live on his own, be employed, finish school, find someone to love, be loved, get along socially – EVER? It would be refreshing if just once someone said to me “Wow, this must suck.” It would be shocking beyond belief if someone ever said to my son after a socially difficult situation for him “I hope you’re OK, don’t worry about it, we still like you.” Is it a compliment to him (and to his parents) that people will say how much he has improved, and that he’s “really not that bad” after spending 15 minutes in his presence? With no real knowledge of the difficulties he and we face every day? Yes, some days are better than others. The “glass is half-full” is still my default setting, but. . . What I would like is just once, if when asked about him and I answer I just don’t know or it’s been a tough day, or it’s not so great, I wasn’t answered with dismissive platitudes. I don’t want to get stuck on semantics but I hope this doesn’t contribute to the idea that ASD is really “not that bad.” How do we get people to separate the condition from the person? Autism is unique in that other conditions don’t necessarily affect the person’s personality like ASD can and does. (We don’t have these conversations about people dealing with cancer or diabetics.) So, I think this may be one of those things that sounds like it would be a good thing, but will prove to diminish the people we love so much, who just happen to be ASD. In a weird reverse of throwing the baby out with the bath water, will we diminish their struggles by drowning them in a glowing bath of platitudes? Hope I’m wrong.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I’ve seen enough of your comments here, Ann, that I think I know what you mean. And I know you are just concerned about minimizing the very real problems autistics face. I think we DO have to be careful to avoid going overboard and doing that. There are people suffering out there.

      But I also think about that kid who typed that he hated being what he was. I keep encountering more and more of these kids in the school system. For me, I’m talking to them. I just want to throw a little hope out there.

      Like with everything else in life, it’s all about balance. We can’t allow ourselves to be hijacked by those without hope. And we can’t be diverted by those who refuse to acknowledge the real issues.

      Autism is an awfully complicated thing. I can’t fault you for feeling weary. Some days I do as well. :)

      1. Ann Burt

        On those days I feel weary (bet you’re surprised today is one!) it’s wonderful to hear the voices here. And like I said, it always comes back to the glass is half-full!

    2. Kaye Chastain

      Oh Ann, I hear you. I hear you so clearly. Those dismissive “platitudes” you refer to can be so hurtful and useless. But always remember that they are usually coming from a heart that is well-intentioned but simply lacks the ability to understand. I don’t think anyone would be foolish enough to pretend that dealing with a child on the spectrum “isn’t that bad.” It can be and often is. But as the incidence of autism continues to rise, more and more families are affected, and more and more neurotypical members of society come face to face with those on the spectrum. I tend to feel that any effort expended to convey a sense of optimism, an attitude of hope and acceptance is not wasted. God bless you as you make the journey with your son. One day at a time….

      1. Profile photo of FlappinessIsFlappinessIs Post author

        I just love you guys. In the absence of my mother, with no sisters, and my stepmother and grandmother deceased, I so often have felt the loss of such since having my children. And especially since having a special needs child. (Which is actually the subject of my post on the 28th. Shh.) It is so nice to hear your voices and support here.

  9. Anonymous

    Flappiness: I love your post. As the parent of a child who cannot yet communicate in a meaninful way (and he is not that young — so I worry about it more and more) – here are my thoughts: (1) some of the “postivity” is done in a way “bullying” sort of manner. “Here’s is a parent that said something negative. Go ahead followers, you all know what you have to do — pile on!” You certainly are not — but it is getting to the point where I’m scared to complain on twitter or facebook for fear of the positivity police getting me; (2) I’m sure it isn’t intentional, but it does tend to make one feel alienated (3) if/when we should be so lucky that my son can find some way to communicate — I’d guess there is a good chance I’d be right there with everyone else positive. Once you cross the communication hurdle, I imagine it is a whole new ball-game (one that has its own challenges, but quite different).

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You’re right. People ARE guilty of that in our community. And it is heartbreaking. I fuss a LOT about things that make me sad or angry about autism. I wouldn’t know how to function if I didn’t get those feelings out. I’m participating in this because I believe in it. However, I’ve seen the tragic side of autism. And I refuse to make anyone feel guilty for their grief – EVER. I just think we need to be careful about the words we use. They convey so much more than we sometimes want them to. Thanks for sharing your thoughts.

      P.S. That communication hurdle does change everything, doesn’t it? Good luck with yours. I’m praying for the same with mine. :)

    2. Lynne Pardi

      Anonymous, I really do understand what you’re saying. I have a grown son who is autistic and non-verbal. We’re all anxious to emphasize to ASD kids and their families that they are not hopelessly disabled people without futures. We want so much to instill hope and a healthy attitude. We should not get so caught up in those goals, however, that we start to deny any difficult or negative aspect of autism. That would be denying reality, which helps no one.

      I love my sons more than anything; but, raising them was made extremely stressful and hard– mostly due to Jay’s autism. I can’t honestly claim to have enjoyed much of their childhoods, which makes me feel pretty awful now. I know all about screaming tantrums that lasted for hours sometimes, socially inappropriate behaviors, property destruction, aggressiveness as he got older, and medication nightmares. He attended several different school programs– was kicked out of his last one. I am still on antidepressants. There were many lasting and undeniably negative affects on our marriage and family life. Still, I wouldn’t want my life to be without Jay! But, I wouldn’t get through it all a second time– honestly doubt that I could.

      Jay is grown up now, as I said– he’s 25. He lives in a group home nearby, where he is very well cared for. He attends a day-hab program Mon.-Fri during the day. He is on a combination of meds that works very well for him, and he is calm and seems contented. He has far fewer socially unacceptable behaviors now. He enjoys going out to eat, going for rides, and listening to reggae music. The group home employs a terrific staff, and I totally trust them. They take him to medical & dental appointments, help him with grooming & hygiene (he needs just a little help), and provide the 5 young men in their care with a spotless home and healthy meals and the structured routines that help them to thrive. I never would have thought that he could function as well as he does now and that our lives could be serene again– but it’s happened! So, there truly is hope– even for the most severe cases! The journey, however, was definitely NOT a “day at the beach.” Like Flappiness, I would never, ever criticize any parent who expressed sadness, anger, or even grief. Being positive surely has its place and is a good thing; but, “positivity police” ?? You just tell anybody who has the temerity (or ignorance) to find fault or judge your very legitimate feelings, you tell them to KISS YOUR BUTT.

  10. Kaye Chastain

    Abraham Lincoln once observed that “People are about as happy as they make up their minds to be.” This from a man who knew first hand the tragedies and heartaches life often brings. As a grandmother I eagerly anticipated the birth of my first grandchild. I remember praying every day with smug assurance that God would provide the “perfect” little boy: beautiful, intelligent, gifted, talented, athletic. Nowhere in that description did I include the term “autistic.” No child with autism is “perfect.” Clearly this diagnosis was a mistake. Then reality stepped in, and from that time forward nothing has been the same. But is he intelligent? Very much so. Is he gifted, talented? At five years old he has written and illustrated a book, and his music teacher says he has perfect pitch. Is he athletic? He taught himself to swim when he was three and routinely dives to the bottom of the pool to retrieve various toys. Is he beautiful? Inside and out. His blue eyes simply take your breath away. Is he perfect? No. But then neither is anyone else. As others of you have so wisely said, we do not ignore reality where he is concerned; we simply choose to focus on the positive. We have made up our minds to be happy. He faces an uncertain future, but he will not face it alone. His wonderful parents, his little brother, his aunts, uncles, cousins, teachers, therapists, friends, neighbors, and, yes, his Grammy and Granddaddy will be right beside him every step of the way. As I tell him often, he is my pride and joy!

  11. Anonymous

    Flappiness: I love your post. As the parent of a child who cannot yet communicate in a meaninful way (and he is not that young — so I worry about it more and more) – here are my thoughts: (1) some of the “postivity” is done in a way “bullying” sort of manner. “Here’s is a parent that said something negative. Go ahead followers, you all know what you have to do — pile on!” You certainly are not — but it is getting to the point where I’m scared to complain on twitter or facebook for fear of the positivity police getting me; (2) I’m sure it isn’t intentional, but it does tend to make one feel alienated (3) if/when we should be so lucky that my son can find some way to communicate — I’d guess there is a good chance I’d be right there with everyone else positive. Once you cross the communication hurdle, I imagine it is a whole new ball-game (one that has its own challenges, but quite different).

  12. E (The Third Glance)

    “They have a right to not feel like a walking tragedy. And they have a right to demand the world not treat them like one.”

    “Every human being on the planet deserves to be celebrated and cherished – not matter what challenges they face.”

    I love this post. And everything about it. Autism Positivity doesn’t mean ignoring everything “bad”. It means treating Autistic people like they are whole human beings. It means reaching into those people and drawing out their likes, dislikes, hopes, joys, difficulties, and everything that makes them a person, and not just focusing on the bad. Is that too much to ask? I am not a tragedy. I have a lot of difficulties functioning in this world. But does that mean I am a tragedy? NO. I accept my difficulties, and I use my strengths to counter them, so that I can live. Isn’t that, at the core, what we all do? It’s just that when you’re Autistic, people assume that you have no strengths to work with, and THAT is what Autism Positivity is working to counter. We’re not out to erase struggles. We’re out to help alleviate the struggles while focusing on the strengths. Yelling “YOU SUCK” at someone doesn’t help. Saying “This is difficult for you. Let’s find another way to do it that might be easier” does.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      This is why I think you are one of the greatest autistic voices out there. I can’t tell you how refreshing it is to hear your unique perspective on ASD issues — while at the same time being compassionate about my journey with my son. So pleased to have made a friend in you, E. :)

      For those of you not already reading The Third Glance, you really should be.

      1. Lynne Pardi

        Flappiness, you’re so right! I still love your blog, but I also love The Third Glance! We get a wonderful mother’s perspective from you and a very, very interesting and valuable perspective from E, as an autistic person. I feel so blessed to have discovered both of these blogs!!

      2. Violets Diary

        Hi I didn’t quite know where to post my comment, but I really like the points you, the Third Glance and Lynne make. I am a disabled person in the UK with disabled kids. My Son has aspergers as well as a visual impairment. I am involved in campaigning for disability rights in the UK and one of the things we have always said in the disability movement is that is that people are not disabled by their condition, whether that is autism, aspergers, visual impairment, mobility impairment, or anything else. But that they are disabled by the barriers caused by others and the environment. This may be in the form of physical barriers such as steps or it may be by the attitudes and lack of understanding of others.
        One of the things that we have always claimed is that people should not be pittied and patrionised or seen as tragic. We have a lot to offer. This is not to deny that in some cases people find things hard and there are many challenges, but it is the right of the individuals to share what those difficulties are and to ask for help and support where they need in the way that they need it.
        We all have a value. Positivity is about the value of an individual as a person, it is not about saying everything is good and denying any challenges, but is about the right for people on the spectrum to share with the world what those challenges are from their perspective and for us to value those who are not so able to express their views by finding ways of helping them to feel accepted and valued for who they are, and not to be patronised for what they are not.
        I hope this makes some sense and expresses my support for today’s event and the great sense of power events like this give to people to share their own experiences.

    2. Lynne Pardi

      E, you have articulated so well the things that I believe! You are most certainly NOT a “walking tragedy”; and neither is my son! He is much further along on the severity spectrum, but he has his talents and gifts. He is a problem-solver and a tough survivor– he’s proven that. He has intelligence and a sense of humor. He is also quite capable of empathising with another person! We have witnessed him defending a house-mate who (he thought) was being hurt. He also has a tremendous memory, lightning-fast reflexes, and an amazing sense of balance. He prefers certain people over others, and llikes the colors blue and green. In other words, Jay is a unique individual with a mind, a personality, and a set of abilities. He is not “hopeless” or “tragic” or “disabled.” He really is “differently-abled.”

      1. E (The Third Glance)

        Lynne – thank you :) Your son sounds amazing. My favorite colors are blue and green too – I love the ocean, and blue and green are ocean colors. (Yes, I know this is a rather off-topic comment, sorry!)

  13. Jenn

    I couldn’t say it any better – yes, there are still moments I am sad at the challenges my son with PDD faces…that my daughter with Asperger’s has trouble understanding social situations….but I also appreciate their uniqueness. I want them to understand that differences can be a good thing, that challenges can make them stronger. The hand we’ve been dealt isn’t as severe as others face, and I in NO way wish to minimize those other struggles. I just don’t want to dwell in negativity, because what will that accomplish? You truly are a gifted writer, and you should could consider writing a book.

  14. Jennie Upside Down

    Ya knoooooooow… This stirred up a couple of thoughts for me.

    I’ve been mildly unpopular with my local down syndrome group because of my attitude.. You know the attitude that refused, when my son was a baby, to curl up in a ball and feel sorry for myself.

    There is nothing perfect about our situations or our lives, but it would be that way regardless of the condition of our children. It irks me when anyone can be so bold as to be upset ( or have an opinion really ) when we have smiles on our faces and seek the best of everything.

    I actually bowed out of our local group for years because I couldn’t stand to be with the “downers” ( pun partially intended ) because all they wanted to do was feel sorry for themselves and talk about how much their lives sucked because of their child having down syndrome.

    Good for you.. Seriously, I applaud you and families just like you.

  15. aspiegrrl

    As a grown woman on the Spectrum, and a huge Autism advocate, no matter where people fall on that Spectrum, all I can say is thank you. Just perfect.

  16. Anonymous

    Dear Flappiness, you say: “Yes, some of the hands dealt by autism have been tough. But not all of them. We call it a spectrum for a reason. There are a very large number of people on that spectrum whose lives are fulfilling and happy.” Given that this is true — why is it so bad to label the 2 things differently? Seems like the placing everything under the same disorder without any sort of acknowledgement that the 2 are different is causing a lot of the misunderstandings and confusion.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I agree that the labels we have right now are insufficient. That isn’t my official stance on the DSM, mind you. I just think that the spectrum is too wide for all of us to be speaking the same language. Which is really way I made that point about the wide variations in people’s functioning. It is very hard for folks affected by one end to understand those affected by the other. Too often, anger is the result – when it should be compassion.

      1. Laurie

        True. There’s a lot of finger pointing and assuming going on. Even with the children who we dub or presume to less affected. Those shoes are not easy ones to walk in. There is a lot of ‘my life is more challenging than yours’ finger pointing and so much of it is really how we view the impact…like the princess and the pea…some people feel something that others would consider small or insignificant so much more deeply…it’s about YOUR journey.

  17. Laurie

    Love this! I do see the dissension in the autism world in regards to how one chooses to view their situation and various other beliefs… from choices in education to behavioral approaches. I just realized today (do I hear ‘ah-ha’?) that the very same people who are polarizing the autism community would be doing the same at soccer practice or church or…where ever else they may lurk.

    I feel like this is more about respect and treating others with empathy and kindness…not really autism at all.

  18. outoutout

    This issue seems to come up a lot whenever “positivity” and “autism” are mentioned in the same sentence, and I have to chalk it up to an ironic lack of empathy. Some people simply cannot understand why anyone could be happy about being autistic.

    Look, we are not, not, not, and NOT telling people how they ought to feel about whatever situation they’re in. We are NOT trying to minimise the struggles that families face. Hell, we’ve been there too – if not in severity, then certainly in spirit!

    We’re just trying to counter the very real self-hatred that comes from a culture that sees People Like Me as a “tragedy”, “burden”, “epidemic”, etc. Do you know what it’s like to hate who and what you are? Look at all the media attention around LGBT kids killing themselves. Or, better yet, look at all of the recent cases of autistic children and adults being murdered by their caregivers, and the public sympathy it generates – not for the victim, but for killers. Because our society sees disability as an inherently sad state of affairs; a cruel injustice. Can you imagine growing up in a world where it was understandable that someone like you could be murdered in cold blood, or “cured” because your kind are seen as not having lives worth living? *THIS* is the pathology that we’re fighting.

  19. Suzanne

    I LOVED LOVED LOVED this post. It really gave me a lift, which I sorely needed after watching/listening to Stuart Chaifetz’s deeply disturbing material about his autistic son (I can’t bring myself to post a link, look on youtube if you dare).

    Your writing is just getting better and better, and after reading E’s comment (The Third Glance) I’ll be checking that blog out too. Thanks for the heads up!

    1. Lynne Pardi

      Suzanne, I just watched Stuart Chaifetz’s youtube video, and I honestly feel physically unwell right now. It was so disturbing! Maybe they ought to place cameras in these special needs classrooms. I know that’s rather extreme, but these kids must somehow be protected! I have long suspected that there are many teachers and paraprofessionals out there who are inadequately trained, overstressed , and for a host of reasons, unfit for the job they are entrusted to do. I applaud Mr. Chaifetz for “going public” with this awful chapter in his life. He is calling attention to a problem that does exist and must be corrected. He is trying to protect his own son and other children from terrible, utterly inexcusable abuse! His anger is absolutely justified. I feel it too.

  20. coyotetooth

    Enjoyed reading the blog and the comments. From what I can understand, Autism Positivity, is entering the stage set forth year after year by Autism Awareness. If you view this as a play (might as well travel the theatrical route as the key words are used so often– tragedy, comedy, drama), you will note that Awareness makes a cameo appearance and takes a bow; pats itself on its back; and rests on its Laurels til next year. It’s like going to a play, seeing the stage set up, a narrator appears to say a few things, and exit stage left. Audience shuffle in their seats for a while, some nod, some sleep, some gafaw. Then they collectively arise and leave. Show over.
    Autism Positivity enters as a logical Act, a heart felt Act–enhancing the Play in richness and authenticity. Autism Negativity will arrive. It is a balancing act.

    I know why the mute man rocks. So I can rock with him.
    I go barefoot, so E doesn’t have to.
    I have learned not to stim; so I Will stim, stim, stim
    And, yay joy of joys, I know love and Love

    Forgive me, I am a fool!

  21. Joan

    I wanted to say I enjoyed today’s post, but that’s not the right word – I was comforted by today’s post, encouraged by today’s post and maybe a bit humbled by it.

    I think the hardest part for me is that there’s no “good” or “bad” place to be on this spectrum. As you said, I’m obviously glad that my 12-year-old daughter with Asperger’s can read and write, is toilet-trained, and is by all definitions “high-functioning.” Yet I’m also left almost in tears with the extent to which she is UNHAPPY. I have three good friends with children who are almost entirely nonverbal, two with autism and one with Down’s syndrome, and they are some of the HAPPIEST kids I’ve ever met.

    Like you said – it’s awfully hard to walk around in a world where you KNOW you’re different, but you don’t look it or act it some of the time. It’s pretty hard to find acceptance that way, and she struggles daily because she’s not the person on the inside that people expect when they meet her. I know nothing is “easier,” but I find myself sometimes thinking the opposite – that the grass might be greener on the “ignorance is bliss” side of the fence… and then I think of the hardships there, very real ones that make my day-to-day struggles pale in comparison by most standards, and I think… is there a way for any of us to be happy?

    I guess in my case, I am happy with the daughter I have. It took time – and a lot of growing and understanding on my part – but I am so blessed to have her and I truly wouldn’t “change” her for the world, though of course I will do my best to help her find ways of coping with difficult times, just like I would an “NT” child if I had one.

    But my question is, can SHE learn to be happy with who she is, and how do I help her do that?

    1. Ann Burt

      Joan, you said what I wanted to say, but so much better. I have two teenagers who are not ASD, and a 21 yr old who is. It’s true, they all struggle (as we all do) but there is a difference for my son. We work on his issues, he’s doing OK. I try every day to remember there are no guarantees for any of us. Best of wishes to you and your daughter.

  22. ❄J€§§¡¢aW€§§¡¢a❄™

    I identify with this so much. The positivism along with the opposing so-called negative emotions… both are realistic. The conflict is really difficult to compromise sometimes. It doesn’t mean that we’re any less advocates for our children, or teaching them to any less to be self-advocates. I’ve said before that good days are decent but bad days are the end of the world. Great days are hard to come by. The trick in this positivism is to realize that it’s a different sort of positiveness than people are used to. It’s almost calculated. It’s targeted and it’s self-empowering. It’s about emphasizing strengths.

    We just have to remember that the Autism most lay-people still think of is profound, severe Autism… the worst of the worst. The subtleties and meaning of spectrum isn’t quite understood by most people who don’t know Autism.

  23. Marita

    “For I know that the roots of his self-worth are reflected in my eyes. Mine. And, no matter what, I want him to like what he sees.”

    Amen! Thank you.

    I want to be able to look my girls in the eyes when they are adults and say ‘I did my best by you’ and that includes believing in them and their abilities.

  24. Shannon Jasperse

    Amen! From one Mama of a child on the spectrum to another – Amen! One of the biggest things I have learned is a child can say so much without any words if we just stop and listen.

  25. momgonerogue

    Thank you so much for this post! Thank you for shedding the light on the differences as well. I had a hard time writing my blog so instead I focused on the positivity I felt in finding others that share my griefs fears and pain as well as my joys and successes in raising an autistic child. Just knowing that there are others out there struggling with the same struggles I am helps, whether their child is low functioning or high functioning we struggle and to support each other as much as possible can mean a lot! That is part of what Autism Possitivity is to me. I posted the article here http://momgonerogue.wordpress.com/2012/04/29/to-i-wish-i-didnt-have-aspergers-autismpositivity2012/

  26. JJ

    Thanks for your post. Great point that by being positive we’re not downplaying the challenges we face but acknowledging them as well as our self worth!

Comments are closed.