Is having an autistic child a burden?



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Maigheo
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13 Mar 2013, 4:35 pm

I read this a lot and it makes me feel really bad for my parents. I was doing research for my research paper and even found a scientific study measuring quality of life in parents with an autistic child.

I know my parents love me, but deep down I've always felt like an unwanted child, because I sometimes think they would have been better off with a 'normal' daughter. I actually think they only love me because I am their daughter and they simply have to. Do you ever feel as if your autistic child is making your life really difficult and how do you cope with it?

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MountainLaurel
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13 Mar 2013, 4:45 pm

Quote:
I actually think they only love me because I am their daughter and they simply have to.

It's not possible to love on demand, no matter what the motivation. One either loves a particular individual or not.



ASDMommyASDKid
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13 Mar 2013, 4:53 pm

Sometimes things of value are difficult and require more work to acquire. It does not mean you love someone less because they are harder to raise. Some autistic children are easier to raise than NTs, some are harder to raise, but I think the difficulties often make me appreciate the peaks more than if I did not have so many challenges. It sounds trite, maybe. I would probably think so if I did not live it, myself. I cannot speak for everyone of course, but this is how I feel today.



adora
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13 Mar 2013, 5:10 pm

I will say that it is challenging, even down right frustrating at times.
Children on the spectrum learn differently than other children, and sometimes don't grasp concepts like nt children do. But when they do get it, you feel like the best parent in the world


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CharlieSheen
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13 Mar 2013, 6:53 pm

Depends on how they're interacted with? I'm in the same boat, and advice I have for other parents given my opinion is try to speak to an (aspergers) child no differently and don't try the same white lies you'd tell a typical child. meet resistance with space, never assume they're lost/hopeless, and lastly... try different methods. don't beat my head against a wall, caveman :) I was fine for years and I've had worse, the difference is wether or not they're being sincere about the affection they showed me, and if they're speaking to me as if I don't know better. I only wanted equal :\

If you feel they resent you, I'm really sorry; Don't dwell on it. If they do in fact resent you it's for stupid reasons, chin up :)



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13 Mar 2013, 7:09 pm

I will be honest and tell you I think that the quality of my life is better because my kids are not NT. That may sound either like I am making it up to make you feel better or that I am delusional, but I can assure you neither are true.

From my kids, I have learned a level of patience that I would have never had before. I have learned how not to sweat the small stuff and to focus on what is important--TRULY important. I have learned the value of perseverance in the face of what sometimes seem to be insurmountable odds. I have learned to both win and lose graciously, not in games, but in life. I have learned how to experience a depth of compassion that I was previously incapable of, even though I--and others--have always considered me to be a compassionate person. I have learned how to suspend immediate judgement and to look for the not-so-obvious answers. I have learned that there is more than one way to be right. I have learned to celebrate the small joys and experience them fully. I have learned how to hold my head high and carry on, even when an entire room full of people is looking at my with accusatory and judgmental eyes. I have learned how to have the strength to truly stand behind my convictions. I have learned to cherish life in a new way. I have learned more about myself, and in doing so, have come to realize that after all of those years of self-doubt...I really am OK. I am not damaged or wrong. My brain just processes things differently. And that is OK.

My kids are the furthest possible thing from a burden. They are a gift. I am lucky God chose me to raise them, because raising them has made me a better person. Or at least of all the possible "me's" it has made me the best one, or nearly the best one, that I could possibly be. I am a better person because they are in my life. Period.

I'm not claiming it is easy. And I will not lie and say that the thought that "this is not fair" has never crossed my mind.

But when I add it all up...all the pluses, all the minuses...the pluses so outweigh the minuses as to completely obscure them from view. I would have never been better off with a "normal" child.

And in my journeys over the last 6-7 years, I have found plenty of parents who feel just like me. I am not alone. So you may come across research that says what a burden it is, but it doesn't mean we all feel that way.

I once had an interchange with a researcher who was conducting the "parents of children with autism are stressed out and burdened" kind of research because I wanted to tell her how horribly wrong I thought she was. I told her I thought someone ought to do research about how rewarding it could be. It was interesting to learn that her sibling had autism, and she wanted to conduct the research, not to show how horrible and burdensome it is, but to help justify support (such as respite care) for parents of kids with autism. Showing how great it is would never accomplish that. It just reminded me that almost always, researchers have their own agendas and sometimes they are not completely obvious.

Another thing to remember is that it isn't necessarily the autistic kid that makes things harder. Sometimes it is all the extra hoops you have to jump through and all the flack you have to deflect from society at large. My daughter's public meltdowns were never really an issue for me. It was other people's reactions to them. My son's intrusiveness and hyperactivity were not really a problem for me. The problem was trying to contain him enough so that I wouldn't spend my time in an argument or confrontation with someone who was intolerant. Those things have always been very difficult for me as a parent and to be honest--I hate them. But I am very clear in my head and heart...those things are not my kids' faults. It's the ignorant people making the fuss or society as a whole who are at fault for those difficulties. My kids are simply innocent bystanders to all of it.

I don't think you can fake love. I think most kids who have parents who don't love them are pretty clear on the fact. So, if you "know" your parents love you, then I'd take it as a good sign that they really do, not just because they have to, but because you are their daughter and they love who you are.


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MMJMOM
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13 Mar 2013, 7:15 pm

I dont now, now have I ever felt my son is a burden. Is he work? YES!! Is he probably more difficult then the ave child? Probably. WOuld I reade him in for the world?? NEVER!! !

I love my son for who he is completely. He is amazing, he has a lot to overcome in his life and he is never down about it. I agree with some of the PPs that an accomplishment for our kids is HUGE and never taken for granted.

SOme might think its a burden, but I dont. I also believe my son is a gift and I am glad he is my child :)


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13 Mar 2013, 7:32 pm

You never go into parenting expecting a perfect child--it is unrealistic. Even NT children can have conduct disorders, mood disorders, personality disorders, genetic disorders or predispositions, and on and on. NT children who go through childhood without a hitch can still turn out addicted to drugs, alcohol or get into trouble with the law. Raising kids is challenging no matter what, and it is a RAINBOW of challenges, just like autism is also a rainbow spectrum of its own. Kids have important jobs: TO GROW UP AND MAKE LIFE DIFFICULT FOR PARENTS--REGARDLESS IF THEY HAVE AUTISM OR NOT. Any parent who decides to have children should understand this is the fundamental law of nature. Children do not come out of the womb taking care of their parents--it's the other way around!

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lilaclily
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13 Mar 2013, 8:35 pm

I have never considered my 9 year old ASD son as burden. Yes he brings a different set of challenges, to myself as a Parent and our family, (when compared to our 11 year old NT daughter). But raising any child is extremely challenging.

As I have Aspergeres, my son to me is absolutely "normal", he makes sense to me and I understand how he thinks and operates. Between us we have a very special bond.

Difficult to expalin, but I love him for his Autism as it is part of what makes him who he is. At times his Autism makes him humourous, amusing and entertaining, his litereal understanding and how he speaks his mind boldly and truthfully at home and in social settings, (oblivious to social protocol). I love how anywhere/anytime he will climb up on my lap for a "deep pressure" hug, how he will smell me to greet and connect with me, how to talks out loud to himself endlessly in constant stories, how he flaps when he runs etc.

Yes he is special and loveable because he has Autism.



miss-understood
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13 Mar 2013, 9:11 pm

I can't get my head around parents loving their kids because they "have to"... It's more like you love your kids because you can't help it! You bond, you would do anything for them and you feel very protective of your children. There is a magic that happens.
It is hard though, I wouldn't have picked it if i'd known how hard, but that would have been a real shame.
All children bring challenges, please don't beat yourself up thinking you've made life difficult for your parents. Trust they love you, for you. I am NT and I caused so much angst for my parents growing up, even in to my 20's... I wondered if they loved me too, especially when I was being deliberately "unlovable"... they never stopped. When I had my own children, I understood that love.

...and writing that has made me a little teary, I'm going to give my kiddies all an extra big hug when they get home from school...
biggest DS with ASD will giggle and dribble on me
DD (NT) will look at me strangely and say something like "what was that for?"
DS (NT) will say "Love you Mum, can I have a drink?"
little DS (ASD) will probably smile/ cringe, then run off and shut himself in his room
and DS "big baby" (NT) who is asleep right now will say "more hug, pwease"

and i won't wish that any of them would react differently. They really are perfect with all their imperfections, I hope they see me the same way too... and I bet your parents feel that as well.



Last edited by miss-understood on 13 Mar 2013, 9:35 pm, edited 1 time in total.

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13 Mar 2013, 9:23 pm

If anything my sons autism has made my love for him even more intense. I guess because his anxiety and difficulty interacting with his peers make him seem more vulnerable to me and it brings out my mama bear. He needs more support than his older brother for sure but I don't think of that as a burden. It's just a fact of life. I am sorry your relationship with your parents isn't closer. You might consider having a frank discussion with them about how you feel. There's a chance there has been some misunderstanding that has contributed to the current environment in your house.



MiahClone
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13 Mar 2013, 10:08 pm

My kid with ASD has been by far the easier child to raise. He makes sense to me. With him when he was first diagnosed (not as autistic, just as severely delayed in several areas) there was a period of sadness more for him, because of the limitations that the people testing said he'd likely have on his future. He's far surpassed all their expectations, though. His brother with ADHD is the one who once caused us to be asked to leave a freaking Wal-Mart, and who once missed being arrested only by fact of being six months too young to be arrested in my state.

I love them both. Not because I have to, just because they are my kids. Any kid is hard to raise, even if they have no difficulties whatsoever.



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13 Mar 2013, 10:57 pm

My son and daughter are the greatest joy I have ever known.

I am thankful for their being every day.

I was shocked to learn that my son had Aspergers, but then realized that I probably have it too, as does my mother and very likely my daughter.

Does being a neuro-atypical parent disqualify me from answering the question?

If not, then I can only say: these are the only children of mine I have ever known. Who can say that some aspects of being their dad might be easier if some imaginary children with other genetics were to replace them? Who cares? They are here and altogether real.

I want them to be as happy as possible and hope that they may grow up to have children of their own some day. I would give my life for them.

I love them without reservation. Is it because I have to? Maybe in the sense that there is some biological imperative, but not for any social pressure. It simply IS so. When they are happy, I am vicariously happy. When they are in pain, I hurt with them.



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14 Mar 2013, 5:25 am

My daughter is a lot of work, much more than an average girl her age, there's no doubt about that. I'll freely admit that and don't feel ashamed about it. But, she is my world. I love her, not just because she's my daughter, but because she's so deserving of adoration. She's a real wee character, with so much going for her and an enthusiasm, for life and learning, that knows no bounds. Every positive thing she does is magnified, in her actions and, even moreso, in my mind. I get so much joy out of raising her that the stress, frustration and tears are worth it. Would I swap her for an NT kid? No chance.

I'm very likely on the spectrum too and I have a very good understanding of her sensory issues, but my daughter is not like me, in the way she reacts to sensory discomfort. I've internalised everything, from the day I was born, whereas she has always let the whole world know when she's not happy. So, we had a very unsettled baby and a young child who never did a thing she was told. But, her approach has actually acted in her favour. We listened and made adjustments, once we understood what the problems were. It took a while for us to get to grips with it and the major improvements only happened about 6 months ago. Due to not making any fuss, no-one knew what was going on in my mind and everyone thought I was fine. In the end, I had to wait until I was caring for myself, entirely, before being able to make changes, even those as simple as buying comfy socks and shoes. It really has not been good for me and I'm happy that my daughter is not like me in that respect, as it will stand her in good stead for the future, despite the conflict between us, in her early years.

I met with 4 other mothers yesterday, who all have kids with Aspergers, or are en route to getting a diagnosis. We all accept that our kids present with challenges that other kids don't tend to have and we're setting up a support group to help one another find solutions to various problems. But, it's quite clear that all of our kids fill our worlds with so much joy. It was a happy meet-up, that's for sure.


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16 Mar 2013, 7:48 pm

Mummy_of_Peanut wrote:
My daughter is a lot of work, much more than an average girl her age, there's no doubt about that. I'll freely admit that and don't feel ashamed about it. But, she is my world.


Same with my two daughters. I would love to say they constantly light up my life, to be honest they are difficult more often than not, but I have an unbreakable bond with them, and would put them before anything and anyone. Those rare nice moments that do come along are priceless.

I do wonder if I'd known then what I know now, whether I would still have had children, but that's a pointless exercise.

Mummy_of_Peanut wrote:
I've internalised everything, from the day I was born, whereas she has always let the whole world know when she's not happy. So, we had a very unsettled baby and a young child who never did a thing she was told.


This too is me. The utterly passive child, withdrawn and quiet, whose traits actually show far more now than they did as a child. One of my girls was the most awful screaming baby, the other started off too quiet (which apparently I was as a baby too) then changed into another screaming one. Both of them are very ODD, which is an odd mix with the rule bound attitudes of children with ASCs.


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