Are Parents "Autism's Hidden Victims?"
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Children have autism, but parents are often invisible casualties. Their child's disorder ricochets through their lives, breaking up marriages, draining bank accounts and robbing them of sleep. University of Washington researchers found these parents, among all with disabled children, suffer the highest levels of depression and anxiety symptoms, and parenting stress.Of course, not every family has emptied its bank account or wound up in divorce court as a result of autism. But I think it's fair to say that every parent with an autistic child has wondered "is it something I did?" And most, surveying the endless possibilities for treatment, have worried that the one treatment they didn't try could have been "the one."Since [her son] was diagnosed, his mother has dealt with depression, chest-seizing anxiety attacks, insomnia and incessant guilt that she wasn't doing enough.
I've certainly been in that place. Tom looked so normal; his speech and abilities seemed hidden under a thin veil, and it seemed so plausible that something very simple - maybe a missing nutrient? or a medication? - could just blow that veil away and he'd be just like every other kid. And, like many other parents, we spent thousands on social skills groups, supplements, and unusual therapies that seemed to offer hope.
That combination of guilt and hope seems particularly powerful. It undermines our own sense of selves, and can set us against even those who love and care for us. Yet it's that very combination which, for some people, provides the energy to move forward, advocate, try another route. There are even some parents who feel a sense of mission - who take on school districts, insurance companies, and even government agencies as a part of the work they do in caring for their own child.
What do you think of this article? Do you feel that parents are autism's hidden victims? How do feel about the use of the term "victim?" Share your thoughts!
Comments
Yes, I do feel its something I did - and something I didn’t do. I allowed her pediatrician to vacinate her; trusted him when he told me the study about the MMR was recanted. What I didn’t do was my own research into vaccines and autism prior to bringing my baby into her well visit. Well visit - ha! She’s been sick ever since.
Diane - just curious - how do your feelings impact your choice of actions? Do you feel MORE motivated to act, or is the feeling that “I could have done things differently” so overwhelming that it makes you feel hopeless?
Lisa (autism guide)
I am a parent of a 12 year old with Autism - the challenges are great and the fight never ending….I do make sure I have “me” time - this is so important for all parents and to have a strong network of support from family and from within the community.
Not only the parents are hidden victims, so are the sibs of the autistic child.
Not only do they have to deal with their
autistic brother or sister, but they
must grow up with parents whose attention is all too often focused to a large part on the autistic child. They are expected to be quasi therapists for their sibling and little adults, and it’s easy for the stressed parents to forget that their normal children are
CHILDREN, regardless of how attractive or intelligent or athletic or talented those children are.
I’m not wild about the use of “victim.” I wouldn’t want to downplay the hardships parents face, but to say we’re the “hidden victims” is to assume that our kids are victims, too (of the “non-hidden” variety).
I don’t think of my son as a victim. I just think of him as my son.
RE Diane’s comment, i respect her right to believe whatever she wants, but i don’t think for a second that immunizing our son was the wrong thing to do, nor that it had anything whatsoever to do with his autism. So that’s off my (long) list of things i could have or could be doing better.
Sis2lis makes a great point — if anyone’s a true victim (altho i still don’t like that word much) it’s the siblings, who didn’t have a say in whether or not to have a brother/sister, and could well be the ones who take on the consequences long after the parents are gone.
I do worry about my daughter (who, by the way, received all her vaccines before thimerosal was phased out, and is not autistic; her brother was born after the phaseout). She’s wonderful and loves her brother a lot, but the situation still can be very tough to deal with, and there’s only so much we can do to “fix” it for her.
Again, I think it’s all in the manner you look at things, and perceive life. At any given time, a horrible accident or other disorder can forever change the lives of families. I think most parents would do the wondering, but let it not consume your thoughts. Many parents struggle with intervention choices but are also smart not to spend beyond their families means to obtain it.
If my son was hit by a car or was intentionally hurt, he’d be a victim. He is not nor am I, even though we do suffer from lack of sleep. Some parents do have underlining depression and anxiety attacks, and those things get worse under stress.
The causes for autism may be many, choices may be many but I believe even if my son is never able to tell me, he’d not hold it against me for the things I simply did not know or the choices I had made for him. Maybe when he hits his teens, he’ll hate me just the same as most teens do. I don’t consider myself a victim nor will I ever. I consider myself a proactive parent who wants to see her child progress to his best. Sure, other parents may have it easier, they may have less stress and easier choices, I cant personally imagine what that might be like nor do I envy those parents.
There’s a part of my story and how my child just came to be, that it makes sense and has purpose. Instead of causing depression, autism helped this quiet Momma to find her voice and her purpose. The only guilt I ever had was not realizing all his behaviors even had a name. But I cant beat myself up over the things I just didn’t know.
I think many parent’s need an energy drink that has plenty of vitamin ‘I can do it’ and ‘it’s ok if I screw up’, along with the mineral additive ‘you’re stronger than you know’ “it’s ok to be sad and cry’. you look into the eyes of a child, and you forget all that victim jazz and realize this child has a whole future ahead and we’re making that future for them better.
I don’t think we are victims, and my advice for those parents that suffers insomnia or something else, they need to be STRONG and be there for them, if you fall,they will with you.
Growing up with a sister who had a medical condition that took much of my moms time, I can say that kids often feel they’re not the center of attention when there’s more than one child. Children at a young age don’t have the ability to comprehend the whole picture of something, all they can understand is ‘I want”. In my family there was 6 kids. I went through wanting more attention from my mom, but I also went through not having a new toy since money was for other things. When I was younger I did resent what my sister had and that it took most of my moms time and thoughts. Kids perceive things very differently than adults do, and after growing up, it was until then that I understood the importance of where that money went and how thankful I am my mom did what she did for my sister, and how hard it must have been on her. It would had been nice if my mom was a little more sympathetic and explained things better to us. But she didn’t. She had a mission and she just went to it. As an adult, I feel guilty for a lot of the kids things I felt about my mom and sister. My mom is 70 some years old, and she still check son that one sister, worries about her and calls the police to go check on her.
At the same time, are kids victims of divorce? You can explain it well to a child but they many times are too young to comprehend these adult things and many times, no matter what you do to help that child, they think it’s their fault. Victim is not a good word, it allows for blame to be put upon a person who did not intend for any of these divorces or disorder’s.
Today there are many programs to focus on siblings, there wasn’t a one when I was a kid, and many more openly spoken people who advocate for the whole, not just the one. I would had done things differently if I was in my mom’s shoes, but only being able to do that understanding where her shoes were. I still don’t like the word victim, and I didn’t think I was one then either.
To add to the guilt we all must feel - we have people like Jenny McCarthy who has done a great disservice to those of us that are not multi millionares. Maybe that is the key - if we were rich, we could ‘cure’ our beautiful son. If we were rich - we would hide our beautiful son away from the world - not take him out and expose his “Saturday Night Fever”. Oh wait - I love my beautiful, loving, wonderfully caring son with Autism. I love that he has a heart that is pure without thought of manipulation. I love that he is so unpredictable predictable. He isn’t broken, he isn’t a victim - everyone who hasn’t experienced the pure love of a ‘challenged’ is the victim.
Diane
You didn’t injure your child. You’re a good parent.
The MMR study was recanted.
When my daughter with symptoms so subtle they are still waffling with a diagnoses goes to a hospital many autism symptoms pop out because they are not sensory friendly places. They have flickering lights these have bussing you and I don’t here, cleaning solutions, employs and patient family smoking outside, nosey patients.
I think greed, misinformation and blame is the biggest problems.
Even bigger than the autism it’s self.
It took me a long time to let go of blame of my daughter’s disability. She’s doing a lot faster.
My husband who is a doctor noticed something wrong months before the MMR but it was so subtle.
I was kind of upset because I felt if more people listened to my husband including me she would have gotten treatment at 6months instead of a few months before she turned three. Now looking back I see
Issues as far back as three months. I believed the lies that delayed children are anti social but learned why it’s called a spectrum.
If I kept on to this angry what will it do for my little ones. It will delay her treatment further, it will make less time for other family members.
We have to stop blaming ourselves and others.
We must share joy.
The greed part is so many people try to get us with fake cures and overpriced therapies. This really can hurt a families future but also the needs of the child when they hit adulthood.
It’s human nature to have answers and when there is none, to find blame. This stands for kids and adults. It’s easier to cope for some when there can be blame, and for some much harder to live when there’s no suitable answer’s. Because of this, autism is wide open for price hiking, instant over night fixes… the skies the limit and because human beings want and needs answer’s, we try anything. (kind of the same concept with diet products). The community needs to start saying more often, “what worked for my child worked for him and may not for yours”. My child progressed and I didn’t do half the things other’s had tried. My child also would still have gut issues even if I changed his diet. If I did have all the money in the world and all the knowledge, not one person really knows how to prevent or avoid autism, no one really knows which intervention will help a child the most to say it’s the best for all.
It’s all in how you look at things and everyone can get there in their own time. Making peace with the unknown can be hard to do but once we get there, it’s a much better place.
Our kid has never had any shots, so it may not have been anything anyone did or didn’t do.
Anyone know how I can find the page “How to help an autistic child with bowel movements?” I typed in the address but this page came up.
I never cry about autism anymore for myself, but I do when I read about another parent’s struggle. Strange.
Given the fact we live in a victim society as things stand, I’d say yes, of course, parents are also victims. However, my honest personal opinion is that we should take the hand we’re dealt and do the best we can and not bee-ouch and moan every second and consider ourselves victims, at least here in the USA where our standard of living is to die for in other parts of the world. To me, a victim is someone born today in Iraq where depleted uranium is causing an epidemic of birth defects. I wouldn’t want to be in their shoes. Mike
Actually I do not feel guilty at all about my two sons having autism. It clearly runs in our family although my sons are the first two to have a bona fide diagnosis. I believe that this was something that was passed on to me and if that is the case do I blame my Mum or her Mum? If I carry a faulty gene that is not my fault and nor is it my Mothers.
I do feel conned however because as well as believing that I may carry a faulty gene I also believe that something triggers that gene to malfunction, and I am one of those who believe that vaccines can be that trigger. I feel conned into believing that they were safe for my sons to have even when I never suspected that they were carrying a faulty gene.
The hardest thing that I live with is not being believed. That creates more stress and anxiety for me than anything else. And by that I mean having to make the professionals believe that my sons problems are real and not something that I have made up or even fabricated just to get provision for them. Constantly fighting the system and knowing that the professionals do not believe you is not a nice way to live.
Here in the UK the system is different to the US and if we fight for our kids for too long the spotlight can then be turned onto us and we become the problem. Is it ever like this in the US? I would love to know.
Great discussions. Parents may find http://www.connectedtherapy.com a valuable resource.
Jackie, I hope you are not saying that mothers/parents that experience insomnia or “something else” are not strong! I have experienced many days of anxiety and depression, as well as many night of insomnia. I feel and know that I am one of the strongest people that I know!!!! and my son GREAT progress in living proof of that. Please do not add to the stress of already stressed people by insinuating that we are weak! PS: My son has never fallen!
Nan, finally someone else who wishes that Jenny McCarthy would shut her month. There is no “cure” for autism - her son is getting the best treatment her millions can buy and he is getting better I’m sure - but he cannot be cured of autism as of today. Everytime this women goes on national TV she does a disservice to all parents who do not have the resoures she has and are down in the “trenches” of autism everyday. When being interviewed,she embarrasses all of us by using foul language and failing to allow people to finish their comments before interupting them - ie. Larry King Live. By her poor language skills she is failing to do what we try to teach our children everyday - proper speech, grammar and language skills! I can only hope that the general public who have watched these programs do feel that she is truly representative of the autism community!
error on #22 I hope the general public DOES NOT feel that she if truly representative of the autism community!
I definitely feel that parents are victims in this situation. We had no control over our children’s autism,yet we had to deal with the consequences. Autism affects the entirely, primarily the mothers. My son is 12 and still in diapers. I have been the primary caregiver from birth. My husband always took a backseat when it came to taking care of our boys. It would of helped if he at least tried to provide the needs of our youngest son and be a “dad” to him. Autism is a disability that affects the mother as well. In the process of trying to keep a balance, often you get burned out. I know for most of us it’s hard to maintain frienships or even a job(I haven’t worked in 10 years).In my case,the struggles became worse when I was diagnosed with breast cancer. All I could think about were my sons, especially my oldest. My biggest support system has been God and my family. My husband’s family chose to drop out of our lives once my son was diagnosed with autism. Later, I found out through the grapevine that they have several children in their family who are developmentally delayed,primarily autistic, yet they were never empathetic towards my son. My kids are their only grandchildren. In part I blame my husband for allowing this situation to continue for ten years. Instead of intervening, he makes excuses for them. Nevertheless, I thank God for my family everyday. They’ve been there for me during my cancer treatment and still stand by me and my boys. To all those parents out there, please hang in there. It’s not easy to do, but our kids our couting on us.
Yes, parent’s are also the victims. Sometimes only one parent can “deal” with the reality. The other parent is left to “fix” the problem. At times I have felt that I have to fix this and there is not enough emotional or physical energy inside to wake up in the morning. It’s the loneliness and the helplessness that causes the anxiety and the depression. The spouse may stay, but only physically…then we are left to compensate with the child…in turn, we have a hard time letting go and moving forward. We sometimes look for the comfort of our spouses in the child and when a child with Autism doesn’t respond, we sink deeper and deeper….so, to answer your question, yes, parents are the hidden victims.
A few parents have mentioned siblings of children with autism are victims, I do not agree.
I agree that it is difficult being a sibling of a child with autism but I would not trade it for the world. There are certain things that my fmaily cannot participate in due to my brother but I do not feel we are victims by any means.
My brother and I are 3 years apart and I have never been put second, my brother and I are always treated equally. I think it is very important to give an equal amount of attention to both children and realize the differences within the children’s abilities and work with those abilities for each particular child.
I also do not think parents are victims, I feel every child diagnosed with autism has a purpose. I feel that if my brother had not been diagnosed my father nor I would be the same. PLease do not get me wrong if there was a way for my brother to be able to communicate and not struggle, I would give up anything. I feel he has made us better people because of the situations we have dealt with. But in no way are my parents or I victims.
I do not consider myself or my autistic son or his brother and two sisters victims. I think and firmly believe that he came into our lives for a reason. To make us less selfish and more empathetic. To make us better people. I have four of the greatest and loving kids. They have patience with their brother but they also treat him like their brother. If he is bugging them they say get out of my room Jonathan! If he takes their stuff they say give it back. And vice versa. My dh is wonderful and supporting. My family and his are wonderful in regards to this issue. I get so tired of hearing the poor me garbage. It is what it is so move on.
Websters defines victim as someone who suffers from a loss. Many families who do not feel that they are victims are extremly lucky. They have found a way to come together and make this tragedy work and have become stronger better people for it. However, for many parents of autisic children our child is our only child and for various reasons will be our only child. Yes, we do feel a loss! Unlike parents with “typical” children we may never know certain joys and experiences that come with having a typical child - Graduations, sporting events, marriages, grandchildren and for some a simple conversation or hearing I love you. The fear of what will happen to your child after you are dead can sometimes send you into a breakdown- I can only imagine what it would be like if my son had a typical sibling that I know would be there for him - I truly think this helps families come to terms and better deal with any losss they may feel. For parent like myself and my husband, there is a whole in your heart and in your life that is hard to fill - it effects your life and your marriage on levels that I could never explain. Trying to have friendships with other couples and their children most of the time leaves you feeling lonely and sad - for parents not walking in your shoes they can’t begin to understand the void in your life and you watch as your child can’t do what other children do and in many cases are ignored by the other children. So many people have told me (when they don’t know what else to say) the God gives special childen to special people. Though I do believe that not everyone could do this “job”, I don’t feel very “special” most of the time. What people don’t realize is that having a happly, healthy, normal child should make you feel that God thought you were special. Yes, my son is SPECIAL and I never thought that I could ever love anyone this much!!!! But there are days that I miss him - I miss the child that I cannot reach and for me that is the greatest loss of all.
Casey, On behalf of so many famililes that are going through a difficult time without any support or help from siblings and other family members, thank you for “poor me garbage” comment - I would love to get over it and move on!!!!!!! Please do not be so judgemental!!!
Not trying to be judegmental. I’m trying to be realistic. I am not the kind of person who could sit and feel sorry for myself. Why would I? I would still have a child with autism. If I felt sorry for myself then I would feel sorry for him and have pity for him. Well I don’t. I’m angry on his behalf. I feel very strongly that his autism was triggered by vaccines. But do I have pity? No. I love my son. He is a part of our family and we focus on the good. We focus on the fact that he is here with us and brings joy to our lives. Is it tough sometimes? Sure. Especially when we are having a meltdown over a something that to me is trivial but to him is serious. But it is tough being a mom to my other kids too. To be honest I would much rather hear him repeating the same sentence all day than listen to my daughter’s fight over whose turn it is to clean their room. Or whose turn it is on the computer or any number of little things that build up that they can fight over. When my youngest sister first was told about Jonathan she had never been around a child with autism before. She has two kids of her own though. She started crying and said she felt sorry for me. And I was shocked. Why would anyone feel sorry for me? Jonathan was still my son and I love him. He is still a smart, funny joy to be around. He just can’t talk. So what. Did I cry when I heard the dx for the first time? Yes. I was sad. Sad for what I had been planning for him to do. I had seen in my head what I wanted him to be and I had to face reality that he was never going to be the star athlete or the class valedictorian. But those were just dreams. I have to live in reality. I have to just let him live his life as it is and not dream and moan over what could or should have been. If I allow myself to feel sorry for myself then I can’t be a good mom to him or my other kids who deserve the best mom I can be.
Re comment 19/Carole:
My son has both autism and down syndrome. We have to fight here in the States for everything he is supposedly entitled to, but no, we are never looked at in the way you are wondering about - never, and I have never heard of such an instance in the states - yet. I can “taste” what you refer to, however, and the more socialist we become the more that will increase. Over here, the squeaky wheel gets the grease, and therefore our hiring a lawyer and, more affordably, an advocate. The more we demand and the pushier we have to be (it wears on us, even though we are yanks) the more the system works for us. It’s like D-Day: we know we are going to win the war, but the battles are a bloody mess, and must be timed energy wise.
Parents who do not feel they are a victim or not extremely lucky, they simply look like life differently than others. It doesn’t make their struggles any less than another’s. It doesn’t make their days any easier than another’s and in fact, you can take too parents with both perspectives and they live the exact same life. Regardless how Webster’s defines victim, in this world there are also plenty of self-proclaimed victims too. Not to say that this is the case here with autism, but what is the way not to be a victim? Many experts of victims have strategies to get beyond that feeling. In the end, there is no wrong or right feeling. You either feel your a victim or you don’t.
I have rarely heard my child say he loves me, he shows it in other ways. As for future events, I couldn’t say one way or another those things will never happen so I wont second guess and spend my days pondering over it. I know many typical adults who never graduate, never marry, never have kids. My child cant do much of what other kids can, but I focus on what he can do.
The public who feels sorry for a parent of a child with autism or that child only sees and consider the autism, but not how cool that child can be beyond the autism.
I think some of us are not hitting the nail on the head. There is a difference between guilt and shame. I think shame hits closer to home. Shame deals more with “who we are” rather than guilt’s “what we did.” I’m going to speak of things now way outside the box. I am not trying to convince, but this was so helpful for us that if it sparks any interest please check out this lead: Sapphire Leadership Group, then on the right side, Amethyst for the “7 curses” and plumbline on the left for “baby blessings” etc.
The world would say our son will never reproduce. My parent’s first born did not either, nor my parent’s parent’s either. When we heard about generational curses,(it can be the result/consequence of breaking natural law, and can skip generations too)it got our attention. The Seven Curses allows you to connect dots and comes with a renunciation at the end. I know it sounds (and I’m being kind to myself here)..strange, but it was a real eye opener. We live in a broken world, and want mine and my family’s as fixed as possible. Best to all.
Thanks for responding Rick.
Here in the UK we tend to get our Service Provision via the State Educational System and the NHS. We fight constantly to prove that our children and adults are disabled enough to warrant these services and provisions. We are often accused of being ‘overinvolved parents’ and a new one is that questions are raised about the emotional well-being of our children if we push too hard. The harder you push here the more likely you are to find yourself looking down the barrel of gun loaded with an accusation about your parenting. This is not helped when you find articles like the following appearing in the National Press.
‘Parents of autistic children are twice as likely to have had psychiatric illness, researchers have discovered. Doctors studied patient records for more than 30,000 children and found that rates of autism rose substantially if parents had suffered schizophrenia, depression or a range of other personality and psychiatric disorders.
A child’s risk of autism was 70% greater if one parent was diagnosed with a mental illness, and twice as high as average if both parents had psychiatric disorders, according to a report in the Pediatrics journal. The finding suggests autism and psychiatric problems may sometimes have a common cause and genetic link.’
We are damned if we do and on our own quite literally if we don’t.
Casey#30 I HAVE NEVER PITTIED MYSELF!! I DO NOT FEEL SORRY FOR MYSELF and do not see myself as a victim as most people define the term. However, I was pointing out that I do feel I have experience a great loss. The day after my sons diagnosed I was out finding as much information about autism as I could - feeling sorry for myself and self-pity was not going to do him or me any good! I love my son with all my heart. He is happy, joyful and shows me everyday just now happy he is and how much he loves me - he is my sunshine! If I could fix him I would- for him not me! However, my point is that all children with autism are extremely different and have vastly different levels of functioning which makes every families dynamics also VERY different. My son is extremely low functioning to the point that he we have not been able to find him effective schooling and he is with me 24/7. My husband works 12-14 hours a day out-of -the -home, both sets of our parents our dead and our only sibling leaves 2000 miles away. My husband works hard because of all the current expenses relating to autism and the fact that our son will have no one to look after him when we are gone and we want to make sure that he has money for the best care available - that is facing reality! His care is primarily left up to me and yes I can get sad and sometimes depressed primarily out of exhaustion- I have NO help! I would love to hear the sounds whatever they may be of children playing, fighting over the computer or just childhood conversation. Because you have “typical” children it is difficult for you to imagine what it is like for parent of an only child (autistic)to go through life wondering what it would be like to have a “typical” child. I face reality and move on each and everyday - some days being better than others. But part of MY reality is that unlike parent who have been blessed with other “typical” children, I am always wondering and planning for what is going to happen to him when I’m dead. ( with type I diabetes my life expectance is shorter than average) Will he get care he needs, will he be sexually abused….I live with these thoughts daily! You have been given the gift of other children who you know will be there for him! Lastly, I think the best thing we as parents of autistic children can do is to know that everyones situation can be greatly different - nothing is a one size fits all solution. We all have one thing in common, we love our children and accept them for the wonderful people they are. However,you might not do so well in some elses shoes.
Do I feel like a victim? No. I have three children with Asperger Syndrome. I often wonder what it would be like to have at least one “neuro-typical” child. Yes, there have been many, many extremely stressful times but never really depression. I’ve put all my energy into helping my kids and refuse to look at myself as “poor me”. As a parent when you child has difficulty with something you put in that extra effort to help as best as you can. Yes, I’ve missed out on a career (I’ll probably be in the poor house when I hit retirement age), I’ve missed out on a normal social life because my kids needed so much attention, my husband and I don’t get to spend much down time together, but we make sacrifices for our kids sake. That’s part of being a parent. I too don’t believe the vaccines caused autism. My oldest son (who was the first child in our family diagnosed) had signs of autism right after he was born (although) I did not realize that until years later. He would look away from me while nursing when our eyes made contact, he never let me put him down, he screamed if I took his clothes off or tried to bath him (he hated change in his routine way from the beginning and avoided eye contact, and he never slept more than an hour or two at a time). I hate to hear parents say they should have never vaccinated their kids because they were fine before then. It’s not their fault. I still believe it is genetic, why do all three of my kids have an autistic disorder? The oldest was born in the northern part of our state and the other two in the central part of the state. After finding out they all had an autistic disorder we realized that the uncle my mother always said was strange most likely had autism also. One of my cousin’s has a son who appears to also have Asperger Syndrome although his mother won’t admit it. She has two sons, one is adopted and one is their own offspring. The one with Asperger Syndrone is NOT the adopted one!
Our son with autism has made our marriage stronger. We are partners in raising our children no matter what. I don’t like the word “victim” because then there would have to be a “persecutor” and it’s not fair to give the child, who is helpless in their disability, that label. Sure, it makes things harder, but I feel blessed and special that God gave me Brandon. He has shown my husband and I what little you have to depend on to have a happy life. He has a very limited diet, but does not complain; he has a difficult time speaking, but knows he is loved so still tries; he makes do with what he has…every day. Guilt is not going to help him or us. I think it’s unfair to blame marriage break-ups on autism. You accept your kids how they are and that’s it, you spend the money you have on helping them and do the best you can. That’s my take, but I’m certainly NOT a victim.
I just bought my son (dx on the profound scale) some t-shirts. Last summer, people started staring at him - yes it torqued me to no end. Although he doesn’t eat but 4 things, he loves to carry around ‘life like’ plastic/rubber food. His main stim is tapping. He taps the play food and feels the texture with his lips. People stare at him when he taps or flaps, so I got him a shirt that reads “I am Autistic, not an Alien. What exactly are you staring at?” Another - “I have Autism - what is your excuse” and “Keep staring at me - I think you are weird, too” - “Go ahead and stare. I am not paying attention to you anyway” and finally “Staring won’t cure my Autism, but not staring will cure your bad manners” - do you think I am being too harsh??? LOLOLOL
Nan - I like the last best. The funnier you can be the more people will respond positively. You may be surprised at how many people want to be supportive and have no idea they are being jerks. It can rock your world.
Carol - Are you in the States? Your husband works out of the home - could he do it here in California? The regional centers here will give you some services and respite too. It sounds much better here - and you don’t sound like you’ve many ties where you are.
Carole Rutherford - I wish you could be here too. I am concerned that in future we may be more like your system. I hope a contradictory report is reported soon. The universal children’s rights campaign I feel is a ruse for having parent’s rights denied, and then later replaced with government control.
I don’t like victim label either, though certainly I am profoundly affected. My personality is not an easy fit with autism–it has been hard to become so much less social with all the positive feedback that brought, that I once took for granted. I have adjusted over years and really made the best of it, and my son is thriving. Ironically, we are training a therapy dog for him. I am having difficulty with consistency and leadership with this sensitive dog because she knows when I am putting on the good face and not being real!
My son is my son, and only that. He is a child who has great defecits, but also has great skills and assets. The bottom line is that autism sucks. Do I blame myself, yes and no. I know that I do the best that I can for my children, and always have. Could I have done something “wrong” that lead to my son’s diagnosis, YES. Have I ever meant to hurt my child, NEVER. Am I a ‘victim’? Never, because my son is not damaged, he is unique, which is no different than any other child that I know.
My son is high functioning Aspergers, but has severe anxiety disorder. I feel that I have to constantly be on his school’s case, so they follow his IEP. Which has gotten a lot harder since high school and has several teachers. Some teachers are great other are not and this creates a lot of anxiety for me and my husband. I am not an agressive person by nature so this is very hard for me when I have to confront school adminstrators. Can’t they just do their jobs?
WOW i thought i was the only one who thought miss jenny mc carthy was a major douchebag. in my research i have found that the minimum cost for just aba therapy is 65 grande a year…i mean she can make that in a day right…dont get me wrong i am very happy that her son is “recovered” and he is doing so well but what about the rest of us. the ones who have to depend on the state and the public schools to get any kind of help at all. systems that are so far behind that i feel like my son is being left in the dust. i would love to put him into the special schools in our area and get him all of the therapy that i read about that is supposed to help the autism. but guess what? i cant even keep a job because of his needs and how often he is ill. we have recently taken him to a neurologist and had him placed on medications to try and calm some of his behaviors which now he has turned into a guinea pig because nothing is working. my son bites his fingers until they become infected. he has such temperfits in public that we cannot go out to eat as a family..the list just goes on and on…but lets face it if my son had cancer, there would be medicines, resources… endless possibilities to help find a cure for him… but for autism…the only thing we have is a blonde bimbo who can go and make oodles of money to do whatever therapy she can dream of for her son…and tell all of us who are in here day after day fighting the fight what we need to do when 90% of us are bankrupt or divorced trying to keep our lives together and take care of our kids the best way we know how. am i a victim…NO…..is my son a victim YES!!!!!!!!
I never felt as a victom and to be quite honest I don’t like that term. At first I had the “Poor Me’s ” , and then I relized that it was my child that need the help. After we recived the diagnoses what difference did it make how she got there alls it mattered is what can I do to make her life easier?
About the whole question of victimhood… I agree that victim is not the correct word, despite the webster definition. Yes, my beautiful loving, purehearted child has lost the childhood he might have enjoyed were he not overwhelmed by sensory issues, and if his apraxia allowed him to interact with other children in the way in which I can see he wants to. If he could speak, he could tell me which was worse, the seizures or the medication he is given to keep them at bay. Is he a victim?
No more than any of us, and no more than kids everywhere who are suffering different difficulties: asthma, severe ADHD, life threatening allergies, diabetes in record numbers- all are victims of an environment they had no part of polluting and all are subject to their unique genetic vulnerabilities.
We added to their toxic burdens by adding chemicals to their bodies at every turn, from the moment of conception, at delivery and at every so called well-child doctors visit. UNTIL I REALIZED HE WAS DIFFERENT- THE GUILT STOPPED THERE!
Yes- my son’s genetic predisposition set him up to be the “canary in the coal mine”
If we don’t pay attention to the message this generation of kids is sending us- it may be too late to feel guilty!
OK, I’m ready to take the heat from those of you who think we should simply celebrate his individuality… If he were not so uncomfortable and if we didn’t have to work so hard to just maintain the smallest gains, there might be more time for that, but this kiddo is truly disabled, not just a little different.
I am not a victim, I chose to fall in love with a baby that is now six..and I’m 59. What I AM is scared and tired of being scared for his future. His PDD-NOS diagnosis will probably change to Aspergers AND ODD…not to leave out ADHD of course. He is challenging, on a good day! We have few friends and have been excluded from family gatherings. That still hurts when I let it…but victim, no.
I’ve been reviewing all these comments and struggling with the term “victim.” As a person who works with individuals with severe autism, but who doesn’t have a child with autism, I run a parallel journey with parents by teaching autism awareness. I am really inspired by the individuals with autism and what the parents go through.
I think that I would use the term “COURAGEOUS PIONEERS” versus victims. I see the parents as journeying through uncharted waters, doing their best to juggle all the appointments and school meetings, shuffling through insurance and district paperwork, riding the roller coaster of emotional highs and lows, wearing so many hats of mom/dad/brother/sister/protector/wife/husband. Anyway, the job of any parent can be stressful and challenging, but adding autism to the pot definitely puts added stress on families (and yes, especially siblings…may I recommend sibling support groups).
I just wanted to pop in and say that many of us see what you are going through, what you are being challenged with hourly and I just want to say that you are doing a great job championing not only for your child, but for future generations of individuals on the spectrum. I realize that you are caring for YOUR children, but I also realize that this responsibility can be unbelievably difficult and emotional at times.
Please know that there are those of us without kids with autism who are on the sidelines cheering you on and that when invited we will get “on the playing field” with you to support you. So, again, I see you as COURAGEOUS PIONEERS…and those following in your footsteps later will appreciate all the work you have done, are doing and will be doing.
THANK YOU!!
www.AisForAutism.net
Carol,
I just wanted to let you know you are not alone, that study(post 35) and how it is used by the public concerns me too. What you describe is a big problem for active, advocating parents. I don’t have a solution other than stick to your instincts. Everyone will have their idea of what and/or how you should do something to help your child, but they don’t have to live with the consequences. Even if no one else tells you, tell yourself you are doing great, you and your child are the best gauge of whether something is working or not. Keep up the good work!
Nan (post38)
I love the t-shirt idea! Would it be ok if I make some for my child? They are brilliant, because most of other people’s behavior(looks, gestures, etc) never becomes verbal where you can stop it. This is perfect!
To answer the question-we are NOT victims of our children’s struggles, what attempts to victimize us is the neurologically typical world(school, legal system, insurance, etc) that we advocate our way through. I think someone above mentioned pioneers, yes we are! Just like any pioneers there are hardships and sacrifices, but we do it because our children are worth it. They are the undiscovered country.
To call us victims marginalizes families achievements and the choice to stay and learn instead of give up.
When I heard of Jenny McCarthy’s book about how her son was “cured”, I wanted to write my own book entitled “Why I hate Jenny McCarthy”. With all of her fame and fortune, and that of Jim Cary??, one would think they could advocate for ordinary parents who are being bled dry by lack of insurance and having to private pay for doctors & lawyers just so they can get the public school systems to provide a paltry amount of services. But NO she has to turn the public lens on this foolish debate over vaccinations — which has been debunked by legitimate medical research over and over again. Give me a break.
The parents and children dealing with autism are NOT victims in any sense… they are in fact modern day warriors.. Fighting the disability, medical & educational beauracracy, social injustice and ignorance, bullying and emotional brutality… these are our daily fights.
Jenny, get on the bus to the right war the next time, ‘k chickie?
I feel guilty that I didn’t push harder when my son was 2 1/2 and I felt something wasn’t right. My husband, our doctor and even our parent’s as teacher educator said “he’s a third child and a boy, he’s just a little behind”. I was 6 months later that people started listening to me. And another 6 months to get through all the testing before he recieved services. I also try very hard to make sure his 3 siblings get enough mommy time and don’t feel left out. I coach my daughter’s volleyball team. My husband helps with baseball and softball. I know I need to try to make more time for me, but it’s really hard when I think I should be doing something more for our kids. Now our youngest needs speech therapy (thankfully not because of autism). So that is one more thing to put into my full day. But, it goes with being a Mom. I am blessed to have what I have and even more blessed to have a husband who wanted to budget and cut back on expenses so that I could be a stay at home mom for now. I try to look at how far Zach has come and not how far he needs to go to catch up to other kids his age.
Yes! I do feel as a victim of my sons autism. Eventhough I have a husband and our autistic son, I have never ever felt so lonely in my life. I cannot go to any social visits anymore. It’s not that I’m not welcome there, but I spend every seccond watching my son who teases or hurts other kids or pets. So making visits is very tiring and I usually leave without having had any conversation that lasted longer then 30 seconds. If I get someone to babysit my son and go to a party by my self, my heart breaks when I see all the kids running around having a good time with each other.
I don’t see the need for the victim label as well. I am a Mother of a 6 year old Autistic son and he has an older brother who is ten. Yes my marriage has suffered, but I am no victim. I look at this as a challenge and something I was given for a reason. I do once in awhile become irritated at other parents who don’t understand the behavior and make judgements before they know my sons’ situation. i.e. extreme outbursts in the shoe store because he does not want new shoes. A change in routine is tramatic for him. It’s interesting to note that a few years ago before my Autistic son was born I worked with K-2 Austistic children in the Special Ed classroom, much to my suprise I had one of my own!
A victim is defined as someone who is subjected to suffering by another, or a person
who is taken advantage of. I do not find myself a victim, No person has subjected me to my life as a parent with an Autistic child.
My son doesn’t take advantage of me either.
What is a more accurate case scenerio is
we parents of Autistic children are pioneers
on a new frontier, with few leaders to guide us. The adventure will leave us tired and
sometimes discouraged. But the world will
be wiser for our taking this journey with our children and sharing the story of our journey with others. I have found my 16 y.o. seemed to be calmer after Auditory Integration Training. He enjoyed the brushing and joint compressions. Vitamins from Kirkman Labs seem to help him achieve focus and calm. OT helped his corredination. Calming lullabies help him sleep. Pharmaceuticals have been tried and I struggle with the side effects of resperidal, it seems to deminish his curiousity and memory, although it does seem to keep him from becoming aggressive. Adderall seems to help with focus, but aggravates his tics. We are learning all along the way. I have learned my son is a wonderful, smart, honest, hard working young man. He loves his dog and is loyal to his friends. Thank-you for letting me share. Celebrate what we are learning, do not be of faint heart. Our children also need us to
make enough energy to advocate for them on legal issues. Bless you all. You have been entrusted with a great chance for learning.
As for the comment about Jenny McCarthy doing a disservice. I take offense to that. I think the opposite. My husband and I took on almost the exact same protocol as Jenny did for her son and we are no multi-millionaires. We are mid-class America. We both worked very hard full-time to pay for the protocol and for the special supplements and foods and we sacraficed a lot. We cashed in savings to try things that could help our son and only if it would not hurt him. We have no regrets. We need to build our retirement again, but the results have been worth it. Just as Ms. McCarthy saw great results–so did we. We went from non-verbal head-banging to mainstreamed in kindergarten. We still deal with ADHD and emotional regulation issues, but we are so much further due to the great DAN doctors we worked with. Careful how you judge people.
When I saw the headline, I said “Wow,
someone else that feels the way I do”
Yes, I do think that I have been
irrevocably affected by my son’s autism
and sometimes I do feel like a “victim”
though I will go down fighting, like I’m
sure he will. When I have felt most
victimized is the isolation that has resulted from having a child with special needs. My family and friends all look at me with sympathy and sometimes admiration, but they still don’t visit. I’ve given up a promising
career and everyone just says, I don’t know how you do it—what choice do I have, I just wake up everyday and do it!
we feel very alone. our 8 yr. old has a hard time with kids in the neighborhood. they just don’t understand him. he is very high intelligience but lacks in social skills. no one wants to understand! it’s very frustrating. i had to go to counciling for a while. it was just taking a toll on my health.
My son is 28 years old. He lives with my husband and I, and we plan our lives around his needs. At six feet two inches tall and 230 pounds, we are fortunate that he is ambulatory. If he could not walk we surely would not be able to care for him at home without help.
Speaking of help, we have none. There are no agencies in our state that offer assistance for the autistic adult living in their own home. Yes, there are institutions available where we could dump him and walk away, leaving him to whatever kinds of abuse that would befall him. That course of action is not going to happen as long as we are alive.
Life with my “sunshine” (his nickname) is certainly unpredictable. He has knocked holes in many of the walls in our house, so we are constantly re-building and enforcing one wall or another. His favorite foods must always be available or we may see a temper tantrum that shakes the walls. We have a dead bolt on our bedroom door so we can have a “safe haven” if needed. Get the picture?
Yet I will fight until my last breath is gone to defend his rights to the best life I can provide for him. Love has no limits.
My husband and I juggle our work schedules to provide our son with care 24 hours a day. We have not had a vacation in 10 years, nor do we see one any time in the future. My husband gets in an occasional overnight fishing trip (twice a year). Are we “victims”, or prisoners?
Cindy - to be honest, you do sound a bit like prisoners in your own home. I don’t know whether you know that you may be eligible for support in the form of respite care? This article on respite care at http://autism.about.com/od/supportforparents/p/respitecare.htm should give you some starting places. Bottom line: you and your husband should not have to feel like prisoners in your own home - and much as you love your son, it sounds like you might benefit greatly from a little time away!
Lisa (autism guide)
Yes I do feel it has ricochets through my life especially now my husband has diagnosis and definetly robbed me of sleep.
Out of desperation we set up our own school for our two boys due to lack of provision and awareness of autism.
Cindy(#58)- as an advocate who is also a parent of 3 sons with a gamut of disabilities (and married to a man with Aspergers) I was waiting to see if anyone with an adult child with autism would respond. Perhaps by this time in life we are more jaded - have less ‘personal’ feelings (i.e. victimization…guilt etc) but the reality is that some of these children, simply by nature of their own world they live in, are dangerous to others - it’s easy to talk about little ones with the high needs of their disabilities - but try to find a respite provider who will take a young adult with aggressive tendancies (or even a hospital that will care for them when they go out of control). Childrens Services are amazing compared to what’s available after 21. Regardless of the support services (nevermind the financial piece) some of these children will always live in their own parallel universe - and adult sibs either bend their own lives to incorporate that universe(at the risk of losing their own friends/spouses/social lives)or walk away. It is sad/frustrating indeed - not exclusive to autism, however, parents of children with Cerebral Palsey, Traumatic Brain Injury, any pervasive disability - tend to eventually end up supporting one another, our society has yet to find a way to incorporate the extremes. Sad? yes, insulting? at times - VERY, but nonetheless, present. I think those that do not feel ostrichized in some way have either not yet reached that point or have closed that emotion off. We all deal in our own way. Anyway - until our society embraces the differences in others, and supports the individual wherever they are in relation to the social ‘norms’ this will not change. I DO love the tee shirts (#38 - Nan) I think we all get tired of either ignoring or explaining to strangers! What a great way to face head on the looks, the ignorance of, or worse yet the pity of society!
I don’t know anyhting about Jenny McCarthy, but our autistic son gets 14 hours a week of ABA (also known as discreet trial -DTT)from a private, professional psychological org. paid for completely by the regional center here in CA. The regional centers have differing philosophies - our is headed by a very pro-ABA thinking person, so that is the type of therapy that prevails We think it’s great. Google Lakeland Florida if you’re seeking healings - there are people camped out there supposedly due to reported healings, including of autism.
I don’t feel my child is a victim. She has a diagnosis. This is something she has to live with and so do I and her sisters. I am not victim. Whatever I go thru, is just a part of raising her. I would rather be with her, going thru all of this. Than to miss it. That way I am also getting the benefits. I love my daughter very much. Whatever she goes thru, so do I. Whatever I need to do, I will do with the Lord’s help. He will help us.
The first few years were the hardest but a doctor friend adviced us from the beginning that we are about to embark on a marathon race. He told us to brace our ourselves for the longest race and pace ourselves or we’ll never finish the race. I always wonder if the race ever ends. Our lives have changed. We are not depressed nor anxious but we don’t laugh as hard as we used to. We don’t have much time as we use to…. like taking leisure walks and making spontaneous decision.
We have learnt to laugh and appreciate small things, conserve energy and taking a step at a time. Pray hard that we reach the end of the line even if we don’t get first prize or a medal.
NAN, YOU ROCK!!!!!!! I love the t shirt idea and would like to make some for my son too… i know that this is completely off topic but I have to ask. My son is in a phase of rearranging his room. He takes everything that he can pick up and piles it into a corner. Toys, books, toybox, drawers,dresser,blankets, pillows, stuffed animals, whatever you can imagine. I have taken pictures because i find it disturbing yet amazing that a child who cannot sit still for five minutes can make this intricate of a mess..does anyone have any ideas of how to stop this other than locking him out of the room.. it has branched out to my room and the living room too..
I live in a neighborhood that thinks I am a horrible parent. How can you let that kid run all over, and w/out shoes? I can practically hear them thinking, as I drive the streets, hoping I will find him before someone else does. Meanwhile, the girls are at home, struggling with homework on their own. The school calls me every day, hoping their next new threat to him will work, as I struggle to make ends meet by myself…. I don’t really feel like a victim, though… more like misunderstood. He looks, and often acts like a normal kid, but he has Autism. It wasn’t in my belief because of shots, although I don’t discount that theory for others. I know that I go in between hopelessness and motivation to do every thing in my power to make sure he gets that best chance possible to become a contributing member of society. Every time I feel like giving up, I go to articles like these and hear the stories of others, and something gives me hope, and the motivation to get up every day and fight the neighborhood, the school district, and autism in general.
Yes, I do feel that mothers are also a victim of this disease. I experienced in Church today a mother whos child was autistic. He began to act out during the service so she left with him and went out into the Lobby. At the same time, I was headed to the restroom with my granddaughter. That mother was so frustrated until she began to walk off in tears and I assisted by taking over completely. He was beating himself with his fist, kicking, shouting, because he couldn’t talk, and he was also crying. I hugged him to let him know that everything was O.K. I took him for a walk inside the church holding his hand. He began to smile. Shortly thereafter, he seemed a bit tired. I sat him in a chair nearby and massaged him in his center back. That is where he fell asleep. I allowed his mother to go back into the church to get what she came for. Some serious prayer and hope. The little boy looked to be about 8 - 9 years old. I really believe the parents are victims too. The mother and the child were people I don’t even know; that really wasn’t important to me at that time.
Wow! I never thought of the word “victim” in relation to me or my son. I have an 8 year old who lives in the spectrum. I consider our situation to be a blessing. Thought I am divorced and have been for some time. The divorce occured when my son was 9 months old. Even if we seperated later I still could not blame it my son’s diagnosis. The blame lies with the parents and not the child. If we cannot withstand a diagnosis then we could not withstand much of anything. When we chose to marry or partner with someone and bring child(ren) into the world it is our honor, right and responsibility to provide for the child(ren) in an unconditional relm. There is no blame to anyone. Autism is simply a diagnosis. The diagnosis itself does not depict your quality of life. You do. Sure families are effected, but that does not meen it has to be negative. There will be hills and valley. We don’t need to try to make our children “normal”. They are wonderful just the way they are. Just love, teach and live by example. My son and I have so much fun with each other and other people. We love our life together and the way it was presented to us. Actually, how one choses to see ones life depicts how one responds to what one has. I see my son as a precious gift and that is how I treat him. I fight the good fight to see to it that his needs are met. I love him unconditionally. I teach him how to love himself and others. And I maintain a loving, carefree home environment where lies and self doubt are not allowed. In other words…we simply live and live simply:-)
I really find comments from some ’siblings’ complaining about their so-called victim hood to be sickening. You have to be seriously narcissistic to worry about your fragile need for “attention” while your autistic brother or sister is trapped in body and mind where they can’t express their feelings, basic wants, needs and hopes; imagine the frustration and suffering of that person - compare it to your need for attention.
Grow up and stop being so needy, self-centered and pathetic and try to think about what your autistic sibling is going thru. Remember, the autistic person didn’t have choice when the condition manifested on them either.
The only sibling pain I acknowledge is the pain of seeing my brother suffer, the crushed hope of what could have been his potential and seeing how limited his horizons and experience base has been compared to ‘normal’ people like me and you.
I am sixteen, and my brother is autistic. His is about five years behind me, and I don’t know what to think.
He can be a pain often. My freinds do not understand him, and would often ask whats wrong with him. I don’t know how to answer, if at all. My parents fight over him, and cater to theropists and doctors for him. I understand now, but, when I was younger, I felt a strong hatred towards him. I am the oldest, and young children often feel a sort of jelousy for younger siblings. Consider that this sibling has constant parent attention, phyciatrists and doctors… I think you see. This makes me so angry, but I am stuck with it inside me. It is a releif to write it here.
I emphasize for my brother. Not as he is somehow faulty - that it wrong. I feel sorry for him as he is caught in a type of cage. My parents monitor him obsessively, and keep a close knot on his homework and school life, including regular teacher meetings. By his age, I was more or less independant. I cared for my own homework. My parents knew less than half my freinds, and I decided how I wanted to spend my schooltime. He does not have any of this luxuries.
The only way anyone learns is from trial and error. And I think my brother may be situated in a padded box. Parental protection to the extreme?
I liked the article, I do feel that parents are hidden victims. I always feel like I am under the gun. I have two boys with autism, one is six soon to be seven and not talking yet. I always feel like I should be implementing something, or reading something. I do feel guilty that I have not been able to make my son talk yet, or have my son get a clue about reality. When I see myself feeling depressed I do take a break and do nothing autism for a while. but you can’t run away from it, it’s always there. Finding a way to cope that is healthy, is what we as parents should do for ourselves and our kids.
I can’t give up, because then what would I do? but is giving up part of acceptance, I noticed that I don’t think too far into the future where my boys are concerned..I know why and I am not ready to deal with that.
I guess so to some degree. I love my daughter but our families and friends never want us to come by, nor come to visit us. We actually got told not to come back to a church when I sought out God to help me deal. We can’t get a babysitter and haven’t been out without her since 2004.
Also she wakes up screaming so much so that I can’t sleep a full night anymore. Breakdowns at home, private and in public. Our whole lives revolve around her. I love her don’t get me wrong but it has been a major struggle.
As a female sibling 10 years senior to a brother with ASD I never felt as I was a victim at the time. I gave up a lot, I was busy and I was needed but it seemed like one of those unplanned things that life delivers. I was definately too young to be parenting but I still can’t blame my parents because they were often at their wits end. I did develop severe depression in my teens and 20s. That could be unrelated, a result of stress and reduced social life, or perhaps my own manifestation of the same genetics that caused my brother’s issues. It is only now that I’m in my mid 30s that I realize the after effects of my childhood. I can find no information on genetic risks for the offspring from siblings of ASD people. I couldn’t go through that again. If I can’t find a way to come to terms very soon with it I will not be able to have children of my own. So all of a sudden this negative effect has manifested. I don’t want to victimize myself but it would be really nice to see some statistics for siblings. What is my probability of being a female carrier? And why would mutations possibly be carried in females? Aren’t point mutations and indels more frequent in sperm? My partner is 10 years older than me. What is the relationship to paternal age?