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Are you the selfless parent of a child with autism?

By January 24, 2009

There are many reasons to get married and/or have children. In my own experience, I find that the majority of people choose to marry and have children because (1) everyone does it, and it just seems natural; (2) they love their mate and/or want the pleasure of raising children; (3) they want the security that comes along with a mate and the expectation that children will take care of them in their old age. Some people certainly marry and have children because it gives them a sense of connection and purpose that they lacked prior to having a family.

None of these reasons, in my opinion, are "wrong" - they're simply part of the human condition.

In answer to my question "has your child with autism wrecked your life?" (referring specifically to children with really profound autistic symptoms), though, one commenter named Laura said this:

We don't become (or shouldn't become) wives or husbands or parents out of a selfish need or motivation for someone to give something back to us. These roles may require complete selflessness on our part at some point in life and deciding that because the other person cannot give back to me what I give to them...their life is not my call to make. And as a side note, I make their life worth living in some way by the way I have so much control over what kind of life they live. As with the disabled husband, with a disabled child, I have the responsibility to figure out what makes them tick, what gives them joy, satisfaction, confidence and any amount of independence and GIVE it to them in ridiculously large amounts.
I must say that I am in awe of an individual for whom marriage and childbearing is a wholly unselfish and altruistic act - and for whom selflessness is a pure joy. Few of us would embrace an unexpected disability, and fewer of us would gladly dedicate their lives solely to the joy, satisfaction and confidence of another.

Personally, while I am raising a child with autism - and while my husband and I have made life changes to support that child's needs - I can't really say that I became a parent out of a purely selfless desire to care for another human being. I wanted to enjoy parenthood (and I do!). I wanted a reason to play, get silly, and rediscover the world through a child's eyes (and I do!). It's hard for me to fault parents for feeling angry, frustrated or depressed when none of their ordinary dreams of parenthood come true.

What's your feeling about marriage, child-rearing, and unexpected disability? Express your thoughts here - or vote in the poll!

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Comments
January 24, 2009 at 12:01 pm
(1) Leila says:

I was raised by selfless parents who made huge sacrifices for the sake of their children and also to take care of each other when each of them had a serious illness. So when I’m a parent and spouse now, I many times see myself having to make difficult choices that benefit my child and husband more than me. Of course I have moments of prioritizing my own well-being, but even if that selflessness was not my primary purpose when I got married, it just happened because of unexpected life situations. It is not always possible to find balance.

January 24, 2009 at 1:21 pm
(2) Bill says:

It’s a double edged sword; my Asperger’s and extremely good engineering skills have allowed me to rise well above my peers, engineering international projects each worth hundreds of millions of dollars, but yet one of my autism spectrum sons is so out of touch with the world, that he has economically wrecked my life (not to mention numerous vehicles), and our family’s lives revolve around resolving his crises. Unlike many parents of autists, I take responsibility for my genetically predisposed progeny (I don’t try to defraud vaccine makers), and I do not expect a dole from anybody. I created this monster, and I will do my best to tame it.
Do I regret marriage, no. Was the disability unexpected, actually, no, my children’s intrinsic behavior is not actually all that different than mine as a youth, and that of my siblings and cousins. At first I thought I was doing society a favor by passing on my savant-like technical and linguistic abilities (I speak 5 languages). The only thing that has changed during my lifetime is the loss of the parental privilege of spanking children, with catastrophic consequences for the autistic, since they are incapable of learning right or wrong by example, to follow the behavior standards of others and to respond to peer pressure, as we now know because of a lack of mirror neurons. Without discipline they can relate action and consequence to, autists are brats, and grow up to flout society’s norms, to grave legal consequence.

January 24, 2009 at 2:46 pm
(3) Do'C says:

“It’s hard for me to fault parents for feeling angry, frustrated or depressed when none of their ordinary dreams of parenthood come true.”

Hi Lisa,

What do you think about implications (for autistic people) of such parental anger, frustration, or depression about unrealized expectations? Have you read, and thought about, Jim Sinclair’s 1993 essay, “Don’t Mourn For Us”? Would you recommend it to parents?

I think I can understand it being hard to fault parents for feeling this way initially, but at what point does consideration of the autistic person become important? At what point do parents have the responsibility to figure out how to deal with their unmet expectations, rather than position a child (or child’s disability) as the source negative feelings or inspiration for complaint?

January 24, 2009 at 4:39 pm
(4) autism says:

Do’C – that’s an interesting point, and is actually tough to answer.

I suppose my personal response is that nothing in real life is as perfect as our dreams make it out to be… not marriage, not jobs, not the “perfect” home, and certainly not the “perfect” child. And I would agree that, in most situations, there’s a point at which adults should be able to accept the disappointments in life and move forward in a positive way.

BUT.

If a family is truly devastated by a child who is, himself, miserable, aggressive, and unable to progress (and I don’t personally know such a child) – I can’t imagine feeling anything other than exhaustion and frustration MOST of the time.

In fact, if the circumstances really were as dreadful as described, I suspect I would seek a residential setting for that child. I think it’s unreasonable for a family to be expected to accept physical danger and virtual imprisonment in their own home – and it’s especially unreasonable when other children are involved.

Lisa (autism guide)

January 24, 2009 at 7:06 pm
(5) Do'C says:

The (hypothetical-for-you) description perpetuates fear and pity.

I’m not suggesting that it’s not reality for some – I know that it is.

Misery, aggression, and inability to progress are not intrinsic to autism.

Not that you directly claimed such, but this is the autism.about.com website, and the article title is, “Are you the selfless parent of a child with autism?”.

Can you give us a taste of evidence-based reality for most families with autism spectrum children with respect to aggression?

How about a glimpse of the strongest contributing factors to difficult behaviors like aggression in children and young adults?

January 24, 2009 at 7:20 pm
(6) autism says:

Do’c – I’ve searched fruitlessly for useful research that describes subgroups of people with autism.

My belief is that aggression among people with autism is rare, and is generally the result of stress and/or frustration. So far as I know, very few people with autism are likely to act out aggressively out of an intention to injure. But I have no evidence in the form of studies to support that claim.

It can also be very tough to know what causes anxiety or frustration in a non-verbal person with autism. Often, it’s not obvious – even to people with training and experience. It can be a sound NTs don’t hear; a change in perfume or clothing; or something we’ll never fully understand. Clearly, people with autism do think and experience the world in unique ways, which means that we NTs may simply not get it.

Setting all that aside I do know that there are people with autism who ARE aggressive – probably because of a combination of fear, frustration and anxiety. What percentage of people with autism fit that description I really don’t know. My own son has acted out aggressively from time to time, but heck – so have I, and so has pretty much everyone I’ve ever known.

My point was that there’s a limit to what a family can reasonably cope with. And while I, personally, have never dealt with a situation as dire as that described in the article, I can imagine such a situation – and empathize with the parents.

January 25, 2009 at 7:39 am
(7) Laura says:

I didn’t mean in my comment to say that I don’t, and no one should, feel frustrated, feel disappointed or even stressed about the various circumstances that surround caring for someone that doesn’t have very much ability to give back to me all that I’m giving to them. I appreciated DoC’s point about there being a time for such emotion to be a big component to life and then there’s a time for a bit of acceptance and moving on towards providing a FULL and RICH life for the person that needs so much care.

I never meant that a family or one person should shoulder all of the care in these one-sided relationship/situations. If they need more help part or full-time from a facility or aids in the home, counseling, medication for depression, financial resources, etc, they absolutely should get it. Getting help isn’t a selfish act. Complaining that life would be better off for all involved were a child’s life NOT to have been lived at all is a very, very selfish frame of mind.

January 26, 2009 at 8:45 am
(8) Laura says:

I’ve been thinking about this more and I wanted to add that I did get married and I did decide to have children with the idea that I would have a rich relationship with my spouse and my children. I don’t know that I see the decision to marry or have children with this notion in mind, selfish. But I didn’t get married or have children to simply get something from them. I also did it so that I had others I could share my life and my love with.

With the autistic characteristics that my daughter displays, it has made it difficult to see that kind of a relationship develop. I’ve watched my mother-in-law take care of my father-in-law as he became completely disabled years after they first married. He cannot and does not give anything back to her. He isn’t even a grateful, kind person to her for the care she gives him. And yet, she promised to care for him, to love him, to respect and honor him, no matter what comes, for better or worse. This is certainly the “worse” and I wouldn’t imagine that she finds constant joy in her role or in what is required of her. But she doesn’t walk away. She doesn’t wish they never married.

The same is true of our children. And the author in the article you originally quoted wasn’t just wishing a vow had never been made. She’s wishing a life had never been lived. I can’t imagine how anyone can justify that kind of selfishness, no matter the heartbreak or “worse” of what may come in caring for a child.

January 26, 2009 at 9:01 am
(9) autism says:

Thanks, Laura, for all your comments! I guess my feeling is that, except under very unusual circumstances, one life shouldn’t be sacrificed for another.

Thus, IMHO, while parents most certainly are and should be responsible for their children, I wouldn’t support the idea that they should “give up their lives” for their children (unless, for instance, they were under enemy fire!).

In the circumstance of a completely disabled child or spouse, I’d expect a caregiver to find and make extensive use of respite, supports and other services – and to step away from that disabled person on a regular basis. And not just to shop for groceries – but to see friends, take a hike, and otherwise enjoy life (guilt freee!).

The issue of a sibling is trickier, but at least in our home we try very hard to be sure that our son’s typically developing sister doesn’t feel that she’s been shoved aside in support of a brother with special needs. Of course, she’s very good at ensuring that she gets hers, too LOL!

Lisa (autism guide)

January 29, 2009 at 11:02 am
(10) Marie says:

Do you have any books that my 14-year-old daughter can read related to a sibling’s autism? I know she feels isolated because we have focused a lot of time and energy on our 3-year-old son with autism.

January 29, 2009 at 11:02 am
(11) Marie says:

Do you have any books that my 14-year-old daughter can read related to a sibling’s autism? I know she feels isolated because we have focused a lot of time and energy on our 3-year-old son with autism.

January 29, 2009 at 11:39 am
(12) Becky says:

My answer wasn’t on there. I am not a selfless parent, but I would not say that I feel my life has been ruined. All of my children were unexpected and unplanned, however, I ALWAYS wanted a child. My second son, was not wanted when I first found out, but I still planned to love and hold and respect him, (I still blame my initial feelings for his lack of attachment to me…therefore creating barriers which would have helped me be a better mother.) Now that he is going on 19…and since I have had the diagnosis at 8…I appreciate his differences more. I still get frustrated at a man who is very intelligent and loving, but who can still be very immature and VERY inconsiderate. But we all learn to take the good with the bad, hopefully.
I just hope that if someone asked him if his mother ruined his life, that his answer would be similar to mine.
Life’s a journey…we are still trying to find our way…

January 29, 2009 at 11:41 am
(13) Sue says:

Like Laura, I married and had children hoping/expecting some sort of balance between the needs of the family and my own growth/career/lifestyle needs. I have sacrificed career, financial and personal goals to help my my autistic teen progress and to help maintain a “healthy” special family for all of us. My anger and frustration do not stem from the fate of having a special child. My frustration stems from how my daughter’s needs (as well as my family’s and my needs) were failed by many years of misdiagnoses, inadequate programming and failures of the private and public insurance systems. Like many other parents, I’m committed to advocating for individuals with ASDs and family members. It doesn’t need to be this way.
Sue

January 29, 2009 at 2:52 pm
(14) Chris says:

I couldn’t agree more with Sue! What happens is that the services are not shared among us all equally either..some get far more than others that don’t know how to ask for things the “right way”…just like your own insurance if you don’t use the right codes you don’t get the services.
You have to be an under cover cop, psychologist and attorney to get the low down on what is what. Parents get tired and frustrated and there seems to be no one to turn to except your computer and even that is limited. Yes, it is hard no matter how you slice it and dice it even for the most diligent parent. Parents wouldn’t be so frustrated with their kids if the services were there for them.

January 29, 2009 at 8:56 pm
(15) Dawn S. says:

Things are easier when you have a parter or if you are married, it is also easier if there is another child. For me, as a single mother of an 11 year old ASD PDDNOS the challenge is not in being selfless, it is in finding hope at the end of the day. Planning for end of life scenarios are sometimes very painful to think about, with limited family or other resources. We are two against the world and that changes the landscape of life dramatically. I keep hoping for a genetic patch that will fix everything.

January 29, 2009 at 10:55 pm
(16) Cindy Jackson says:

Shortly after getting the Autism diagnosis for my son, I came across the short story, “Welcome to Holland” in our Church library. This helped me deal with my pain, anger and sense of “loss” and move on. I recommend it for any parent of a disabled child.

January 31, 2009 at 7:38 am
(17) Sharon says:

I do live the life of a parent with an autistic child who is aggressive. I have been down the road with many medications (which I am still pursuing), a mental health arrest and hospitalization in the psychiatric unit, extreme difficulty in getting training in how to physically restrain my son so that he does not hurt himself or anyone else, difficulty in getting qualified and trained service providers both at school and for respite here at home, a soon-to-be-ex-husband who doesn’t get it and has injured my son in the past out of anger and fear, etc., etc., etc.

I live in New York state, and there is a horrific lack of support for families in my situation. I am considering out-of-home placement for my son (and he is only NINE), but it should come as no surprise that such placements are hard to come by. I am told that the typical waiting period is about 1 1/2 to 2 years. I have to force the issue with my school district to provide appropriate placement for my son and appropriate training for those who work with him. I am a very vocal parent, and I believe I’ve made a difference for my son…and I’m not done yet.

I have given up a full-time career to care for my son and his needs (and those of my “typically-developing” daughter). Am I selfless? NO. Am I a martyr? I hope not. When I decided to become a parent, I committed to putting my children’s needs first. I am doing the best I can with what I have. Isn’t that what we all do?

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