Is an autistic child always a burden?

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Seba7290
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11 Aug 2018, 4:58 am

I have read countless articles online about how difficult raising an autistic child is and how some of the parents wishes they have never been born. It kinda sucks to read all these Reddit threads about how they don't want to have children as there is a chance of them being "cursed" with an autistic child like it's the worst thing that could happen to them.

This makes me fear that my parents see me in the same way and that they secretly wish only my NT twin sister was born. I almost feel guilty for being born, as if my existence itself was a burden on my family.

So parents of autistic kids, do you feel your child is a burden? And are autistic kids always more difficult to raise?



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11 Aug 2018, 7:51 am

In our case definetly "no." My autistic daughter is not a burden. She is an absolute joy to me. She has given me more than I could ever imagine a child could give a parent. I find her neurotypical sister harder to raise than her.

That is not to say she doesn't have her moments. I need to plan ahead, brainstorm, come up with solutions, I need to know her much better than I would a child that didn't have her level of autism (which if fairly mild). We have a really well established trust between us and she has developed really strong coping skills to deal with the things that trouble her. This means that in many ways she is more proficient in many areas than other kids her age as her coping skills are so well honed. However it is more exhausting for her so she needs much more down time and non social time to recover.

For example, we have been away from home now for nearly 3 weeks. The last week one of her "summer" friends came up to stay in the house next door. They have been living in eachother's pockets, sleepovers, all their time on the beach together, spending every waking moment together. My daughter has been getting increasingly stressed, not when she is with them but at home. Her behaviour has deteriorated towards us at home. This is common. She saves all her politeness and self control for being with others and then comes home and her built up frustration all breaks out. This can be hard. I would not say it is a burden but if is something that requires careful consideration. I think her ability to independently navigate social situations is really important. I see it is as a skill that comes with a price and unfortunately both her and I pay that price. The balance is getting her to see that she needs to take down time for self preservation reasons even when she is having fun socially. And getting her to develop the skill to step back and take that time.

Yesterday she got off the beach early and came home and had suddenly come up with a series of books, she is an avid writer and loves art, so then she was off. She spent 3 hrs just immersed in her own world. And then came out of it refreshed. It is just a case of finding that balance. So that she can navigate her social world as expertly as she does without the fallout being too large.

Sorry, that was long..... In short, I don't see my daughter as a burden in any way. I see her as the most amazing person I have ever met who achieves amazing things through difficulties and who sometimes slips up and needs more of a understanding and helpful hand than others might need.

I see one of the most important role of a parent of a child with ASC to be the steady, calm and patient voice that is internalised over time and guides her and helps her be calm and patient with herself and learn how to best take care of herself emotionally and physically. That and feeding special interests.


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eikonabridge
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11 Aug 2018, 4:30 pm

Seba7290 wrote:
... This makes me fear that my parents see me in the same way and that they secretly wish only my NT twin sister was born. I almost feel guilty for being born, as if my existence itself was a burden on my family.

So parents of autistic kids, do you feel your child is a burden? And are autistic kids always more difficult to raise?

Two comments.

First, let me cite my favorite example: sea turtles. When they hatch, they can run on the beach, jump into the ocean, swim, and start to fetch food by themselves. All on day one. They are fully developed and have acquired all the skills they need, even before they get out of their shells. But these sea turtles don't write poems, compose symphonies, or build rocket ships to go to the moon. Humans spend much more time rearing their offspring. It's part of evolution. Same with autism. Parents that want things simple, might as well just raise sea turtles and call it done.

Second, my wife is neurotypical. Yet, she is the person that says: "If I had a choice, I still would have chosen to raise autistic children." If you ask my wife or myself, both of us will tell you that we would much rather raise autistic children. We have seen parents raising neurotypical children, and trust me, it is no fun. We don't see them as having fewer problems than we do. We don't see them as happier than we are. Frankly, I scratch my head as why anybody would want to raise neurotypical children. It reminds me of a passage in "My Big Fat Greek Wedding" movie:

... And they look at us like we're from the zoo.
This no work, Maria.
They different people.
So dry. That family is like a piece of toast.
No honey, no jam, just dry.



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IstominFan
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12 Aug 2018, 4:17 pm

eikonabridge,

I love that movie-and what a perfect quote!



League_Girl
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13 Aug 2018, 4:27 pm

Parents who make those posts have kids who have severe autism or other severe issues.


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14 Aug 2018, 1:46 pm

League_Girl wrote:
Parents who make those posts have kids who have severe autism or other severe issues.

I wish this site had a like button. I agree with this.

I think there are multiple factors to this question. I think it really depends on the functioning level of the child (I know a lot of AS or ASD patients hate this word, but there is a reason why we have these terms) as well as how accepting the parents are. As well as environment and other basic needs.


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League_Girl
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14 Aug 2018, 3:12 pm

If I had a kid that was stealing my identity and taking my money and hacking my card or holding me at knife point or threatening me or threatening to break my stuff, of course I would be talking about it online. But yet no one sees me talking about my son about his behavior and him not being able to handle being told no or not being able to handle disappointment without having a meltdown and behavior because he is not that bad. And when he is calm, he is very good and pleasant to have around. Parents are not going to really rant about how much of a burden their child is if their issues are not severe. They might talk about it but they wouldn't be doing it the way parents do about their kids with severe problems or with severe autism.


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elsapelsa
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14 Aug 2018, 3:49 pm

League_Girl wrote:
If I had a kid that was stealing my identity and taking my money and hacking my card or holding me at knife point or threatening me or threatening to break my stuff, of course I would be talking about it online. But yet no one sees me talking about my son about his behavior and him not being able to handle being told no or not being able to handle disappointment without having a meltdown and behavior because he is not that bad. And when he is calm, he is very good and pleasant to have around. Parents are not going to really rant about how much of a burden their child is if their issues are not severe. They might talk about it but they wouldn't be doing it the way parents do about their kids with severe problems or with severe autism.


This is probably very true. Can I ask how old your son is? My daughter is nearly 9. I would describe her much like you just described your son. Although she has fewer and fewer meltdowns these days.


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League_Girl
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14 Aug 2018, 5:09 pm

elsapelsa wrote:
League_Girl wrote:
If I had a kid that was stealing my identity and taking my money and hacking my card or holding me at knife point or threatening me or threatening to break my stuff, of course I would be talking about it online. But yet no one sees me talking about my son about his behavior and him not being able to handle being told no or not being able to handle disappointment without having a meltdown and behavior because he is not that bad. And when he is calm, he is very good and pleasant to have around. Parents are not going to really rant about how much of a burden their child is if their issues are not severe. They might talk about it but they wouldn't be doing it the way parents do about their kids with severe problems or with severe autism.


This is probably very true. Can I ask how old your son is? My daughter is nearly 9. I would describe her much like you just described your son. Although she has fewer and fewer meltdowns these days.


He's seven.


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15 Aug 2018, 1:49 am

League_Girl wrote:
Parents who make those posts have kids who have severe autism or other severe issues.
See, once upon a time, people believed that the earth was at the center of the universe, and who dared to say the earth went around the sun was sent to inquisition. Today, practically no one believes that the earth is at the center of universe.

Once upon a time, people thought that the square of numbers was always positive (or zero), and that the equation x**2 + 1 = 0 had no solution. Today, anyone with a high school education knows about complex numbers.

Once upon a time, if you told people that

1 + 2 + 3 + 4 + ... = - 1/12 (yes, negative one twelfth)

they would think you are joking.

In a world where no one knows about complex numbers, if you tell them that x**2 + 1 = 0 has solutions, they'll think you are crazy. Right? They will laugh at you. They will show you "proofs" that the square of all numbers must be positive.

- - -

What I am saying is, except in extremely rare cases (below 1 in 1,000), I don't think there is such a thing as "severe autism." What I am saying is, we have a low-functioning society, we have low-functioning parents, teachers, psychologists, doctors. That's what we have.

Sure, people may think I am crazy, that I am out of touch with reality. The question is, what if the opposite is true? What if I am the only sane person in the world? Has anyone paused to think about that? What if I am the same kind of person that has said the earth goes around the sun and that the square of numbers can be negative?


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15 Aug 2018, 10:21 am

You obviously don't understand that some kids can have so many problems their whole families cannot function.

Lot of autistic children are not burdens because their problems are not severe enough to make their family dysfunctional and making their parents unable to hold down employment or also needing medication for anxiety or depression or making them be poor because they can't have a stable income, not because they are uneducated or disabled.

Yes there are kids out there with so many problems, you may choose to not believe it. There are people out there who do not think racism still exists or that the Holocaust never happened. It's so much easier to live in a bubble and just lie to yourself and pretend life is all roses because the truth is uncomfortable sometimes and reality.


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15 Aug 2018, 10:51 am

EVERY CHILD has the potential to be a burden or a blessing, depending on the parents' point of view.



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16 Aug 2018, 8:04 pm

ASD is a condition of gifts and burdens, so while some things become more time consuming and difficult, others are easier. Every person is different.

I would not trade my ASD child for anything. He has grown into a remarkable young man that I love spending time with. Even in the tough years, he was more joy than burden. Happy memories. And some very hard times. I learned a lot about life raising an ASD child.

It isn't the same for everyone. But even without being ASD in the picture, no parent ever knows what they are going to get with their children. We can only hope we never get more than we can handle, and that we will do right by the children we are gifted with.

The best people to ask this question to are your parents. I try to make sure my ASD son knows how amazing he is, but does he let outside influences sometimes cause him doubt? I'm not sure. And some parents just aren't demonstrative to begin with. As a parent, I say its OK to ask and, I guess I should remember to tell my own son again how I blessed I feel to have been given the opportunity to raise him. To hell with the tough years. He was worth it.


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17 Aug 2018, 1:10 am

League_Girl wrote:
You obviously don't understand that some kids can have so many problems their whole families cannot function.

Lot of autistic children are not burdens because their problems are not severe enough to make their family dysfunctional and making their parents unable to hold down employment or also needing medication for anxiety or depression or making them be poor because they can't have a stable income, not because they are uneducated or disabled.

Yes there are kids out there with so many problems, you may choose to not believe it. There are people out there who do not think racism still exists or that the Holocaust never happened. It's so much easier to live in a bubble and just lie to yourself and pretend life is all roses because the truth is uncomfortable sometimes and reality.


My friend took her 6 ft, 270lbs level I autistic son to the doctor because he was ill today. The son is non verbal.

Meltdown before car. Meltdown in the car. Meltdown in the office. HUGE meltdown during the exam where he bit staff. (the medical facility is ASD aware, and does everything they can within reason to make their clients comfortable)

Managed to get an antipsychotic quick melt into him, then you have a large adult that is really tired. That makes him harder to move.

My friend is a little over 5 ft and weighs nothing. Her son has put her in the ER for cracked ribs, broken wrist, cracked vertebrae. Her family staged an intervention to find her son a group home. They are worried he'll kill her accidentally.

Burden is the wrong word. He's not a burden, but neither his or her needs are being met anymore. She's in her 60s, and handling a nonverbal large adult is totally out of her skill set.

There is a big difference between someone like Alex who can work, go to school, and communicate, and someone like my friend's son. So when you read a parental vent on Reddit, look at where it's coming from and why. The worse ones really come from lack of community supports. There's no help, or they don't know how to get help, have no money to throw at it, or intellectually can't figure out how to make it better.

Also there are NTs who b***h about their seemingly normal NT kids, and what a major buzz kill the kids are. It's not just NT parents hating on their ASD children. I see much more NT vs NT crabbing than the other way around.



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17 Aug 2018, 12:18 pm

Tawaki wrote:

My friend took her 6 ft, 270lbs level I autistic son to the doctor because he was ill today. The son is non verbal.

Meltdown before car. Meltdown in the car. Meltdown in the office. HUGE meltdown during the exam where he bit staff. (the medical facility is ASD aware, and does everything they can within reason to make their clients comfortable)

Managed to get an antipsychotic quick melt into him, then you have a large adult that is really tired. That makes him harder to move.



Doesn't sound level 1 and the fact he has put her into ER for cracked bones and stuff. Unless he has more going on than just autism, then that would make more sense.



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Also there are NTs who b***h about their seemingly normal NT kids, and what a major buzz kill the kids are. It's not just NT parents hating on their ASD children. I see much more NT vs NT crabbing than the other way around.


And I see none of the autistic people out there whining about parents whining about their NT children but when it comes to autistic children or any other special needs, then they get verbal about it and get upset about it. Only people I have seen addressing this are the childfree.


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17 Aug 2018, 4:01 pm

Any decent parent will love their child no matter what. I know my parents love me and are also proud of me.

But I suppose I wasn't the child they expected me to be when I first showed signs that something was wrong with me (when I was 4). They didn't expect concerned teachers to be calling them saying that I caused disruption in the classroom, wouldn't sit still, and just couldn't cope with school. They didn't expect to be having meetings with teachers, therapists and child psychiatrists to try and work out why my behaviour was so out of character, and it obviously concerned them. It caused a lot of stress at the time, stress what other parents weren't going through with their children that were the same age as me.
Although I received a diagnosis when I was about 8 or 9, it still broke my mother's heart when I was a lonely teen crying for a friend to hang out with. My mum got exhasperated with me because she wanted me to be happy, and I was not happy. I hated myself, hated my Asperger's, hated school, hated having no friends, and was just miserable a lot of times. What parent wants to see their child like that?

The way I see it, most neurotypicals are wired to bring up neurotypical children, and anything different and unexpected puts the parents in a spot where they don't know what to do. And I know how the parents feel. Just imagine. Your two-year-old isn't talking at all, doesn't have the same interests as other two-year-olds, is distant and hard for you to bond with, is delayed in development, and just sits there spinning things all day. What would you, as a neurotypical parent, ask yourself? "Why is my toddler like this?" "Are we doing something wrong?" "Will our child ever have a normal life?" "Will our child be retarded or disabled?" "How do we go about it?" People just say "oh, it's OK, just go to the doctor, get a diagnosis, get support, and Bob's your uncle!" But it's not always as simple as that. You see other parents around you with two-year-olds that are learning to talk, being potty-trained and just developing typically, and also enjoying Christmasses, birthdays, parties, playdates, preschool, etc. OK, bringing up neurotypical children ain't plain sailing either, but, like I said before, most people are hardwired to bring neurotypical children up in a neurotypical world.

And I'm not just talking about autistic children - same goes to a child with any developmental delay, even physical disorders too. If you have a baby that is (so far) developing typically (even if he or she shows signs of something later on), you enjoy the moments of the baby being a baby and reaching all his or her milestones. But when a baby is showing concerning signs of disability or developmental delays, you spend less time enjoying life as a parent with a baby, and more time going backwards and forwards to doctors or whatever, wondering what's wrong with your baby and hoping you will get the support you need and worrying about your child's future.


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