What's Wrong with Autism Heroes
And ever since it arrived in my mailbox, it's been driving me nuts.
I finally figured out why.
My kids used to watch this Saturday morning Disney cartoon called Higglytown Heroes. In Higglytown, everyone is a hero - so-called because they actually do their jobs. The plumber is a hero when he fixes the sink. The pizza guy is a hero when the pizza arrives on time. The librarian is a hero for finding your book. No one does anything surprising, amazing, or even above the call of duty. Nevertheless, they're all ... heroic.
Autism Heroes does the same thing. It suggests that parents who manage to love their children with autism "unconditionally" (whatever that means) are heroes. Parents who attempt to find useful treatments for their children with autism are heroes. Parents who decide NOT to try to hide their child from the world or deny their autism are... yup, heroes.
Here's a quote from one of the families profiled in the book:
Both of us made a commitment to share our learning with the world, to become public about Frankie's autism and not to hide it. Some parents don't want others to know about the autism and want to shield their kids from it. But if we can talk about kids needing glasses and daibetes screening and asthma epidemics, we surely can talk about autism.OK, this book was written THIS YEAR. Autism is on Oprah, Larry King, 20/20 and The View. It's the charity du jour, with funds raised by Jerry Seinfeld and Bill Cosby, to name a few. Jenny McCarthy wrote a book about it. Yes, I THINK we can talk about it.
And we can do a whole lot more than just talk.
For one thing, we can put people with autism front and center, and allow them to speak for themselves as they are able (and many of the children in this book could easily have spoken for themselves if anyone had asked them to do so - which they didn't). We can point to people with autism who have overcome great obstacles to achieve significant goals - and allow those people to be the heroes of their own lives. We can, as parents, step aside and give our children the spotlight.
Of course it's hard work to parent a child with autism. It's hard work to parent a child with any difference or disability. In fact, it's hard work to parent, period. Our libraries are full of books about explosive children... "spirited" children... children with learning disabilities, ADHD, Type II Diabetes, and fetal alcohol syndrome.
But once you take on the role of parent, you're kinda sorta expected to provide your child with things like... affection... physical care... financial support... and stuff. There are, of course, plenty of parents who DON'T do that, for whatever set of reasons. But their shortcomings don't make the rest of us heroes.
There are heroes out there in the autism world. People who go above and beyond what anyone could reasonably ask of them. People who make a difference not only to themselves and their own child, but also to others around them. And there are people with autism who could reasonably be called heroic because of the extraordinary work they've done to fulfill their own potential and to support others in the process.
Maybe I'm being a bit old fashioned, but I like my heroes heroic. A pizza guy who gets your order right isn't a hero. And neither is a parent who is willing to accept his child - and allow others to know that his child exists in the world.
Comments
Kinda simplifying it though aren’t you? If a parent were to give up their life entirely, go hundred’s of thousands of dollars in debt, and challenge an entire medical establishment just because he/she believes that their son/daughter can be better I think that is above the call of what an average parent is expected to do, and it certainly is above what the average parent does do. Not playing the martyr here but parenting a child with Autism *well* could be considered heroic, it certainly is a heck of lot harder than delivering a pizza… haven’t read the book though and perhaps these parents weren’t that type…
I haven’t read the book yet, so I can’t comment directly on its content, but I do agree that it would also be interesting and relevant to hear the perspectives of individuals with autism, as well as their parents. I recently read an article about the book from the Los Angeles Daily News (”Parents of Autistic Children Share Experiences in Book”), and the editor of the book was asked if she had considered including the perspectives of children with autism. Her response was that she wanted this book to be the parents’ voices, but that she would consider the children’s voices for another book, and that it “would be very interesting and insightful.” I think that it is important to hear from various perspectives, including parents and individuals with autism. Whether that makes anyone in particular a hero is, I suppose, a matter of personal opinion. Take care and Happy Holidays! Nicole Caldwell, M.Ed. of http://www.PositivelyAutism.com
Bravo. I absolutely 100% agree. People who are doing what they’re supposed to be doing anyway (e.g. parenting their kids) aren’t hero’s.
I agree. Being a parent doesn’t make you a hero, it makes you a PARENT. If you choose to go into debt, that’s your choice. Doesn’t make you a hero. If you choose to try every snake oil treatment on the block, it really doesn’t make you a hero. If you choose to accept your kid, it makes you perhaps a BETTER parent, but still not a hero.
Good gravy. “I didn’t consider it. How insightful”? Vomit. There’s some insight: we are more than just poop smearing insightbags.
Unless you are a parent of a child with autism, I don’t think it is fair of you to make any comments about what is heroric or not in terms of parenting a child with this disorder. Parenting an autisic child is nothing like being a parent of a child without special needs. Does it make me better than anyone else? Absolutely not. Does it make me a hero? Absolutely not. But I don’t think it is fair to diminish parenting special needs children as nothing more than ordinary. That is a very simplistic and ignorant view of parenting. Try for one day to have a child that doesn’t look at you, speak to you or even seem to notice that you are there. Now try doing that for the rest of your life….that is the reality of parenting children with autism. My child will never be independent, my parenting goes far beyond just sending my child to college and on their way. I will have to parent my child full time until the day I die. Do you think that is just “normal parenting?” Again, I don’t feel like I am a hero, but going into debt, not my choice, insurance doesn’t cover the cost of any form of autism treatment. Divorce rates amongst families with children with autism sometime reported as high at 80%. Not it probably isn’t heroic, but it isn’t nothing either. Others understanding that my life is nothing like theirs would be appreciated.
Well, my wife and I have given up much of our lives, and certainly all of our financial resources and then some to try and get a handle on this thing called autism. We’ve moved a thousand miles and changed the complete direction of our professional lives to get better services for our autistic son. And yes, we have challenged the medical establishment. We’re not heroes. We’re parents. My heroes are the ones who make equal sacrifices for our kids, who do not have autistic kids.
Shari – Lisa Jo and I are parents of autistic kids. Kassiane is herself autistic.
I often disagree with what Lisa Jo says but I can say that I agree with her on this one.
I am the parent of an autistic boy and I consider it my basic duty to do the best I can for him, as I would with any son or daughter. I’m certainly no hero.
The whole notion of heroes is disturbing because it places the recipients as “Other.” It makes disability “easier to digest.” It keeps disabled people in an inferior position.
I don’t believe in heroes. I believe in people who just do the right thing. I believe that so-called “sacrifice” is just a part of being a decent, responsible human being and that we are here on this earth to assist each other.
Using “heroes” in the disability context is hugely insulting to disabled people. They don’t need heroes. They are not heroes themselves either. Ascribing heroes further widens the gap between people. I’m not for making the gaps any wider than they already are, please.
Thanks for this post.
I agree with you – I like my heroes heroic. And it would be good to distinguish the real heroes who go above and beyond the call of duty to advocate for others and those who do regular parenting and live regular lives. The misuse of the concept of heriosm is a problem throughout the disability world.
Blind people cannot stand hearing about how just getting to work in the morning is heroic! And people who use wheelchairs go nuts when they are considered heroic for crossing the street. This is the perception of heroism based on low expectations.
I also agree with Wade Rankin, Mike, and Shari – that sometimes parenting specific children with autism does become herioc as it goes above and beyond the call of duty.
Then you get into another problem: Raising the bar too hard for ordinary, non-heroic parents and letting the rest of society off the hook for helping the parents out.
This is a complicated subject…
Oh, and Shari – I am the parent of an autistic child. I feel insulted when people call me “heroic” just because I have a child with “special needs,” as you put it. When people do that to you, they are really pitying your circumstance. They are putting you on the shelf. They are saying that they are so glad they are not like you. They are removing themselves from you and making sure that you stay away.
I don’t believe that’s what ANY parent would want for themselves or their child.
Respect is equal.
I have to agree with Lisa on this one. It sounds so much like that comment we’ve all heard a thousand times (I get this like twice a week) “I don’t know how you do it. I could never do what you do.”
Most of the time I just smile and nod and thank whoever said it, but what I really want to say it, “please don’t treat my child like she’s burdening me! She isn’t. And you COULD do what I’m doing. But you don’t because you don’t have an autistic child. So you feel sorry for me. Futhermore, you would do this if you were in my shoes, because that’s what any responsible, loving parent does — they take what they are given, love their child unconditionally, and do the best they can.”
It’s not heroic. It’s unfortunate that so many parents are handed such a full plate, but there’s nothing heroic in caring for an autistic child.
It’s just love.
Shari, I am also the parent of a child with Autism Disorder, with profound developmental delays.
Unlike Estee no one has ever called me “heroic” so I don’t really know how that feels but I do understand the challenges you face as a parent.
Thank you for offering your honest, experience based perspective.
One of the problems with being called “herioc” simply for parenting my child is that it gives other people an “out” from doing anything to help. Friends, relatives, and others I meet can say to me, “I could NEVER do what you do, Julie!” and then they have a wonderful excuse for not taking my son for a day because “they could never do it!” They can count their blessings, put on their blinders, and move on because I’m a “hero” and they’re “not.”
I haven’t read the book either and don’t think that I would. frankly put, all people have it in them, they just never realize it until they have to dig deep to reach for it. and this goes for anything, being a parent of a child with autism to hearing your child has cancer. I for many years prior to my child being born had to have my exact hours beauty sleep or I was no good. I was actually known for my bedtime while my sister’s and friends went out to bars
Who thought I could ever stay awake with only 2 hrs of sleep each day?
the hero isn’t me the parent
the real hero is my son, who showed me I could be more than I was and could do more than I ever thought I could. he really is the hero, since it’s really him he did all the hard work to be where he is today. Autism is hard on the parent, but it is also hard on that child as well.
I think everyone misunderstood a little about what I was trying to get at. No, I don’t think the word hero is the best way to describe what I do as a parent of a child with autism, and I do feel that I am just doing what is my responsibility to do haven chosen to become a parent. What I was getting at was it still is different to parent a special needs child. It is harder than parenting children without disorders, and I struggle when parents of “regular” kids try to compare their struggles with mine. I can’t tell you how many times I hear about other’s kids throwing a tantrum in the store “just like my kid does” Oh no, it is no where near what my kids does, because his could last for hours, and then he will obsess about the issue for the rest of the day. My 10 year old is not potty trained, and that is not like having a two year old potty trained. I guess I just wanted to give us special needs parents some kudos for doing this job. And I do know of parents who don’t parent their special needs children, refuse to acknowledge the disorder, refuse to get treatment, or find special schools, read a book etc. I know them personally, so we do actually do things that sometimes others are not willing to do. This year has been rough on our family and we are sticking in there and I guess I just felt that unless you state you are a parent of child with autism, or someone with autism it is easy for someone to read these comments and feel that there doesn’t need to be any specail push for autism. “Why it isn’t anything complicated to parent these kids, why should they get research money?” kind of a thing. I have been told that by someone before, and I certainly don’t think that is a fair statement either. It is complicated, no question…again didn’t say I was a hero, or a better parent, but I do think special needs parenting deserves to be respected as different.
I think I hear something else you’re saying too. The book title missed – it talks about Autism Parent Heroes, and not Autism Heroes. I haven’t read the book, and don’t plan to do so, but your brief description is about the wonderful support people for people with Autism. It’s true enough that they are wonderful, just like you are, because they’re being parents who didn’t drop the ball. Maybe the book is just right for someone who wants to be reminded that they’re doing the right thing by being a good parent for their Autistic child. But I’m inferring it is not about the Autistic heroes – the kids and adults who have made great strides in their lives and are the role-models we seek.
Hopefully, they’ll come out with a Book 2, The Real Autism Heroes.
i have not read the book. I have to prompt and queue my son on many things. I wouldnt know where to begin. I applaud all parents who can manage the energy to share their experience. I worry and work hard to assist my son with his tantrums, potty training issues, obsessive issues, social interactions with people/children issues. I will give KUDOS and whatever HERO title to all the parents who can empathize with me. Once i can hear my son tell me I love you mommy without prompting him, I will consider myself a hero!!!
I haven’t read the book yet, so can’t comment directly on that.
However, my daughter and son-in-law ARE heroes to me (though, they too, never feel that they are) because of the extra effort that they have always exhibited in doing the absolute best that they can for my autistic grandson.
I wonder if all of us have that dark, nagging question (that I used to have) floating around in our heads when it’s just a philosophical possibility and not a reality; Could I love, or be able to deal with, a child that has a physical, mental or behavioral difficulty? Will I be one of those people who just cannot deal with it?
What I now call “Everyday Parenting” is difficult enough. Throw in the added stress, pressure and responsibility of being the kind of parent you should be to an autistic child or children and you have exponentially increased those points, to the nth degree for some.
So, to me, parents of autistic spectrum children may indeed be heroes. I know my grandson’s parents are.
Hi. I have taught Autistic children for 32 years now and I believe that parents often get stuck in stages of “grieving” and some parents need to feel like heroes to survive. I do not agree with it but I have had to deal with it for years. I have young children so I am usually the one who “opens” that Autistic door for them and am often not liked. Being someone who usually has their child for 7 hours a day so that they can have some kind of “regular” life, I often suggest that they keep their job or get one, volunteer or join a parent’s group so that they can have that adult contact. I think that I have more problem with the fact that since celebrities are now talking or having children with Autism that it is so open! I have seen some of the Oprah shows and I have commented on her blogs too but one father who was not a celebraty commented that “he is my son and I am his dad and that is how it is going to be!” Now this man has his heart in the right place.
Interesting…I just realized I never heard if you are the parent of an autistic child. Are you?
I agree that people doing their job the way we expect is not necessarily heroic. I used to cringe at the “everybody gets a trophy for just showing up” tactics of the 80’s and early 90’s. There is something to be said for a little focused effort which brings outstanding results. Plumbers should fix pipes and pizza guys should deliver, right? So what might make the difference to make a hero? Well, delivering pizzas in a blizzard on time and still hot – now, that gets a bit of a hero consideration from me. (this happened when I was a chaplain snowed in a hospital and the staff had no food!)
Parenting a child living with some mysterious condition, while the “Establishments” argue with you and each other on its causes, its treatments, its cost, and anything else they can argue about to distract parents, does get a “pizza in the blizzard” notice from me as well.
I don’t believe that parents on the Spectrum are looking to be called heroes – they are looking for acknowledgment in the crazy world they live. They, and yes I, look for real answers, in real time, with real interventions, and without the real-ly boring crap of ego-fests vying for attention of who has done what and who can raise how much money.
The book uses “hero” – a worldly word – for the truth it really tries to convey: Grace.
To do any job well, to be noticed as extra-ordinary for what is otherwise commonplace, comes from a place of grace. A desire to BE a little more, which radiates outward in all that one does. Being sets the intention for what you are Doing.
The intention of the book is to bring validation to persons who travel a rocky road, often alienated by family and friends, usually criticized by educators and doctors, and ignored by social services, particularly after the age of 6, and definitely after 21.
All parenting requires extraordinary effort – we need only look at the compounding social ills to see how many parents struggle with it. To cite one group for trying to handle an extra burden is not to ignore the other groups struggling with other issues. My sense is it was an attempt to say “Hey, it’s okay, you’re not alone.”
Loving a child in any condition is what parents are called to do. Yet, most emotional and mental issues adults deal with stem from the perception of the lack of sufficient love and nurturing when they were children.
When we all get out of our own ways, setting aside fear and judgment and allowing healing through love and acceptance, then we move with a Hero’s stride to do what is needed. The debate is not if the parent of an autistic child who tries one approach versus another is some type of hero. The question is do those who judge us have the grace to be the hero these kids need to make a difference for their quality of life?
THANK YOU LISA JO!!!!!
What a silly concept. I Hate it when people make comments or say how special I am because I love my son and do everything I can to make his life better. What the heck else would they expect me to do?
That other parents are actually perpetuating this myth is really sad.
This is one book I won’t be reccomending!
Bravo!
All parents are heroes in a sense. Parents of children with disabilities do some very heroic things sometimes. But to suggest that there’s something especially heroic about loving a kid with autism implies that it’s okay not to. It isn’t.
And really, any book called Autism Heroes that doesn’t welcome the perspectives of people who actually have autism needs, at the very least, a new title.
What an interesting discussion. As I have not yet read the book, my comments are to the discussion at hand. As a military wife, I noticed the term HERO thrown around left and right. Just because my husband served in Iraq, he was a considered a HERO. Well, that was his job and that’s what he signed up for, thus not necessarily heroic. I think the key here is the individuals with autism. I have been writing to all the shows…Oprah, The View, Larry King, etc. asking them to have a show that showcases individuals with autism who have made a positive impact on our world and their community. It seems that all the recent publicity always leaves out the obvious…the person with autism. Let’s hear from them, their views, their wants, their dreams. Let’s also hear how they experience life and how we, as citizens in their community, can help them navigate or better understand their sensory issues and challenges. Too often, they are viewed as invisible citizens. As an instructional aide of those with severe autism, at this point, my students are unable to verbally articulate what they experience, but there are many very articulate individuals with autism who can shed light on what those with autism experience and can advocate for themselves. Many times support groups and advocacy groups are set up leaving out individuals with autism from their leadership and/or sometimes even their membership. One of my goals is to increase autism awareness, but not from the medical or statistical perspective…from the perspective of shedding light on what individuals with autism experience to help others better understand how they see and navigate their lives. If anyone is a hero is this dialogue, it is the individuals with autism who take risks and overcome barriers within each of their own lives. For some, just walking a dog or trying a new food is a heroic act…for some it might be discovering the cure for cancer. Each individual and heroic effort is unique as are each of us. Joanna, author, A Is for Autism, F Is for Friend.
I would rather be called “hero” than a bad parent who obviously can’t control their child, because we all know that’s why he blurts out rude things to adults, and why he can’t sit still and why he cries at the drop of a hat. We all know it’s the parent’s fault, of course there’s nothing wrong with him. This is/was the usual response I got from teachers, relatives, strangers in the mall, etc.
I haven’t read the book, but I don’t see any malicious or even condescending intent in what I’ve heard so far. Sometimes in making a correction, the pendulum can swing too far in the opposite direction, that’s probably what’s happening now that people are finally paying attention to people with autism.
I understand what you are saying. I agree that someone is not a hero for taking responsibility for their children and loving them unconditionally. But you are completely wrong when you say that it is not hard for a parent to come out that their kid has autism. After my son was diagnosed I had people telling me all the time that i ” just didnt know how to take care of my kid and that autism is just an excuse parents use when they can’t control their kids tantrums.” I was blamed (even by a nurse) for my son not being able to talk. So it is not as easy as one would think to come out that your kid has autism. I have had people look down on my child or not let their kids around him at the playground. Their ignorance is not bliss… it is isolation for my son and depression for me. So until any of you have went through having to come out that your child has autism or deal with the daily tantrums and being kicked just because you can’t understand what your son is trying to tell you… keep your opinions to yourself. I am not a hero. I simply love my child as I should, but there are so many parents out there fighting for the right for our children to be treated as equals and to get treatment and research that was once denied!
One last thing… I understand how annoying it is to be called a hero for loing yur kid. I hate it when people say they look up to me for raising my son. What was I supposed to do? Send him back because he was “defective.” Parents raising autistic children are just that- parents. It just upsets me that the author of the article made it sound like it was so easy to come out with autism. It may be where she is from. But here it was not so easy.
Just for the record (and it’s all in my bio) – I am indeed the parent of a child with autism! Tom was diagnosed with PDD-NOS at age 3.5 (he’s now 11).
Our son is not “recovered,” nor is he is in a mainstream classroom. In fact, we have rearranged our lives to homeschool him while we both work. And of course, we’ve had moments of great frustration, embarrassment, and even anger over the years.
Bottom line, however, it isn’t Tom who makes life more difficult. In fact, he’s a terrific kid with amazing creativity and awareness. What makes it tough – when it is tough – is the reactions of others to either our son or to us.
Just today, as Tom was sitting calmly eating a piece of cake at a community event, I had occasion to mention his autism. Without missing a beat, the woman with whom I was talking (a stranger) told me how lucky she was – and how she didn’t think she would be able to cope with the stress of parenting a child with autism.
I know she meant well – and wanted me to feel that she admired me. But frankly – what was she thinking?! Here was Tom in a room full of strangers sitting calmly on a chair eating a piece of cake – and she couldn’t imagine how terrible it would be to parent him?! Puh-lease!
In fact, I am quite sure she would have done just fine with a child with special needs. She seems like a lovely person. But it was just that kind of “what a hero you must be to care for a child like that” that gets under my skin.
I’m no hero for loving Tom. Maybe my heroism came in when instead of jumping down her throat I smiled and said, “of course you could – he’s a wonderful boy.” Her response – “well, I suppose we all rise to the challenges that life presents us.”
Maybe not all of us. But I’d bet that pretty much everyone commenting on this blog fits the bill.
Lisa (Autism Guide)
I have not read the book but I believe that each of us is a hero to someone. Maybe it’s less about being seen as a hero to everyone else and more about being a hero to those around you.
My high-functioning autistic son who is in a regular classroom got laughed at because when they did a unit of heroes, he said his hero was me. I have always answered my son when anyone asks me who my hero is. Just because we are only heroes to each other doesn’t make us any less heroic in someone’s eyes.
Am I your hero? No, not anymore than you are mine but if, when I die, my legacy is that I am Jesse’s hero then that is good enough for me.
I have not read this book but I have to comment. My boys also watch Higglytown Heroes and I think you are missing the point of the show. The show tries to teach that everyone is a “hero” in their own way and that we should appreciate all the people in our community. As a mother of an autistic boy I have to say that not only are we parents “heroes” but SUPER-HEROES!! Yes, raising a child is a choice but having an autistic child is not! It’s demanding in so many ways; physically, mentally and spiritually. It’s hard on siblings and on marriages. Maybe people will think that I am full of myself but I am very proud of what we have accomplished as a family. My life’s mission is to raise autism awareness and educate as many people as possible. I am starting a parent support group in my area. Hero? Maybe not, but hopefully in my children’s eyes I will be!!
I have to say I can see where you are coming from. I have never felt nor seen myself as a Hero for accepting my children when others in our society won’t acknowledge them (for having Aspergers, ADHD, OCD, and all that seems to come with the territory). I usually relate hero to firemen, or men and women in the military. However, I find my son and daughter who are 11 and 8 who both have Aspergers Syndrome have been my heroes. I have two other boys with ADHD and they too are my heroes. Maybe you could call them my teacher or inspiration? Hmm good discussion I am not sure.
The reason is they have shown me how to laugh, and that it does not matter what anyone says or thinks. I have not gone into debt for therapies and treatments. Although I have come pretty close, I research what techniques help, and the professionals who are involved help me help my children. If it is something that I can do such as help with exercises, brushing (sensory therapy), and vision therapy (that is apparently cosmetic go figure) certain things like that the OT’s at their school have helped me with so I can help them at home, they do have therapy (counselor) outside of school that helps us as well. That is all we have ever done, what was needed for our children’s survival, and for them to succeed. We are both working and going to school, so that we can provide and do these things for our children. See, had my child been born blind, or had diabetes I would be caring for them still, sure there would be a slight change in my routine. Even if they didn’t have this diagnosis, who is to say that is normal? I think there are more parents out there that want the society to see the Autism world for the beauty that it is, more so or the same as the hardships. Maybe they meant no wrong by it, or maybe are trying to make a statement. Whatever the reason is, I hope that the focus is not lost.
I know Barbara Firestone, the editor of Autism Heroes. My son Tom who has autism and is now 25 attended a HELP Group school in Sherman Oaks, CA. Barbara is the CEO of the Help Group. Knowing her personally, I can say that she is moved by the dedication and passion of parents of children on the spectrum. She has great respect for the parents she has met and does not want others to take them for granted or minimize the way they step up on behalf of their children. As many of the parents who commented on this topic, I do not think of myself as a hero, and that word choice may be causing a negative reaction. I thought by sharing the gist of my conversations with Barbara about the book it might shed some light on her perspective and intentions. Emily
The author has TWO children with autism I think he knows what it is for the children to be heros
I think it is grossly unfair to suggest that people not buy or read the book because one takes offense at the title. The book is filled with stories of ordinary parents faced with extraordinary situations and I think that anyone who has heard the diagnosis would tell you that hearing that their child has autism is extraordinary. It is meant to be helpful to parents who might see themselves in the pages of this book and the proceeds go directly to THE HELP GROUP. How can this be a bad thing? So — you don’t think that parents deserve the mantle of hero? OK. That’s OK. The parents in the book would all probably wholeheartedly agree that they are not heroes — just parents. At the end of the day — it is just the name of a book and this book helps people. Why do we have to be so cynical that judge the book by its cover? Buy it. You might be pleasantly surprised and at the very least, you will help children with autism.
In your critique you say that we CAN talk about it — but that doesn’t mean people DO talk about it. I am involved in a group with teenagers with autism and their parents and there are a handful of parents who still don’t want to use the word with their kids and the kids are horrified at the word when used to describe their diagnosis. The more we talk about it, the better and these parents have demonstrated a certain amount of courage by agreeing to discuss their private lives in a public forum. I can’t quite understand your beef, actually. Who cares how you like your heroes? I wonder how you would have reviewed this book if it had been called simply ‘Autism Families’. I guess you wouldn’t have bothered, right? You would have had nothing to thumb your nose at. I prefer a book with a positive message to a review filled with spite and sarcasm. I guess I am a bit old fashioned.
I agree with you. Why is it that nowadays that it’s expected that most people DON’T take the time to truly care for their kids, and then there are those that do and they’re called heroes? I have a son with Autism, and everyone asks me, “How do you do it?” How do I do what? Love my son? Fight for his rights? Get him the support he needs? How could I NOT? I’m not a hero, just a mom that’s head over heels for her kids. Yes, there are parents that don’t, but just because they don’t doesn’t mean I am a hero.
I have Asperger Syndrome, a form of autism, and I would consider my mom to be a hero, because she stood up for me when I was unable. Now I am an autism advocate, and I am in college to become a school psychologist, so I can work with kids with autism spectrum disorders. Another hero I have is a woman named Jan who works at my local Area Education Agency. She inspires me to persevere. Although I have not read this book, I think that parents of autistic children are heroes, because they are fighting for their children in a way that other people could not imagine or understand.
I can’t imagine someone even thinking about criticizing and act of love such as a book like this one. I’m wondering if you have an autistic child yourself – I imagine not. Where is your compassion?
Well, first, since autism is a languaged- based delay, you can’t expect the perspective to come from the child with struggles of expression–even the higher functioning spectrum kids. Once some become adults and are comfortable with expression, they can write their own book. Oh, some have! And those are quite popular, too.
Second, the heroic part of parenting a child with behavioral issues is that they often do not receive the same sympathy or empathy as parents of a child with a physical illness or disability. Frankly, that odd behavior makes other parents and peers run in the other direction. So, if they buy and enjoy a book that helps them keep going, what should you care. Often, anything to do with autism awareness is only viewed and UNDERSTOOD by those who live with it. The rest of you are too busy rolling your eyes and turning away instead of offering a simple smile or hug.
The real heroes are not the parents anyways. It’s the kids. What comes so easy to most kids–approaching a group of peers to play, going bowling in a loud chaotic environment, knowing when it’s okay to raise your hand in school–is cause for a meltdown for an autistic child. Even a non-disabled child riddled with shyness, feeling awkward wearing glasses to school for the first time, or finally figuring our which direction the soccer ball should be kicked is a hero in my books.
The parents are leaving their jobs to spend most of their time calling insurance companies, researching IEP’s, and learning OT treatment. They use all their babysitting favors up for doctor appointments instead of going for a sandwich with their spouse. And, they have to live with the turned up noses and acusations from other parents that their kids behave that way due to bad parenting. Again, heroes in my opinion.
Two words for you: “Lighten up!” You’re just another NLD snob.
I guess I have a different take on what “hero” means. A hero, to me, isn’t a person who cares for his or her family or chooses not to give up on himself or his child despite the fact that life is difficult.
I don’t care for celebrities being called “heroes” when they are going through cancer treatment – simply because they ARE going through cancer treatment. Many many many people go through diseases, live with chronic pain and disabilities, and yet manage to be productive and caring individuals. The fact of NOT choosing to give up entirely can be difficult at times – but I just don’t see it as “heroic.”
If I applied the thinking in Autism Heroes to myself, my ego would be vast. I’ve worked hard to raise my son. We’ve tried many different treatments, I’ve started a special daycamp, Tom’s dad and I have given up our personal time to homeschool because that’s what Tom needs. I write about autism, I research autism, I give my time and energy to autism.
Quite frankly, though, it’s what I have chosen to do. I could just as reasonably have kept Tom in school, taken the programs that were offered, and that too would have been okay.
I LIKE being the person I am relative to my kids. If I didn’t, I wouldn’t do it. If I did it entirely out of guilt, I’d be bitter, angry and depressed. And that, IMHO, is far from heroic.
Lisa
I agree that when we start tossing the term “hero” around any time a parent with an special-needs child does their job, we diminish other parents who are doing just as fine a job with their ‘typical’ children. But there is an unspoken ’specialness’ in what we do. My autistic son is loved and cared for no more or less than my neuro-typical daughter. But I do find myself devoting an exceptional amount of time to blogging and commenting about, advocating for and ‘protecting’ my son.
Wow. This whole conversation is frighteningly sad. Please read Philipians 4:8. New Testament. Think on THESE things.
i thought the book was good – was written in a way that makes it easier to understand