Poll 5: Parents of autistics unhappy with their children

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Answer
Poll ended at 12 Feb 2012, 7:23 am
I am autistic and if I had to pick I'd say that overall I mostly agree with the sentiments expressed in the text 73%  73%  [ 16 ]
I am autistic and if I had to pick I'd say that overall I mostly disagree with the sentiments expressed in the text 14%  14%  [ 3 ]
I am not autistic but I had to pick I'd say that overall I mostly agree with the sentiments expressed in the text 5%  5%  [ 1 ]
I am not autistic and if I had to pick I'd say that overall I mostly disagree with the sentiments expressed in the text 9%  9%  [ 2 ]
Total votes : 22

arnoldism
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14 Dec 2011, 7:23 am

Extract 1: If you had to pick one option, would you say that overall you agree or disagree with the sentiments expressed in this text extract?


I think there are a number of hidden issues which need to be addressed regarding the parents of autistic children going on a crusade against autism, mostly I believe that many of the parents themselves have issues which they are not willing to confront.

Firstly they are upset because previously they knew nothing about autism other than just thinking autism is bad in general due to societies stance on autism and statements about it such as "autism is a serious, disabling and lifelong condition" and so the initial reaction to having an autistic child is very negative. Adding to this they don't understand that what makes one person happy may not make another happy and so assume that if their child is alone and focusing on an interest or their thoughts that the child is unhappy and suffering just because they themselves would not enjoy being alone, they think that being alone for longer than they could bear is a terrible thing and don't understand that autistics need a good amount of time alone to be happy and healthy. Many parents also think, because they themselves enjoy socialising, that their child is unhappy if it isn't socialising and also unhealthy because the lack of socialisation isn't normal, normal being healthy and abnormal being unhealthy. They are also unhappy that their child wants time alone and shows less interest and affection towards them; their child is not making them as happy as they would like, they don't want to leave their child alone, they want to interact with it and as the rejection hurts them they make the excuse of seeing the rejection as an illness on the child's part (e.g. see 1:47 of this video from autism speaks http://www.youtube.com/watch?v=Xwq3LtPWm5k there are many more examples you can find yourself if you wish). Many may also feel embarrassed/ashamed (although would never admit it) that they have an autistic child as they don't like explaining it to other parents who have the neurotypical children which deep down a part of them may envy, they feel they can't "show off" or brag about their child and in feeling that their child is defective feel defective themselves as their child is an extension of them. They also blame everything that goes wrong with their child on autism rather than accepting that everyone has problems and suffers at various stages of their life as part of "the human condition", autistics may suffer in different ways at times but overall may not be suffering any more than the average person. I believe some parents may also worry (and I include subconsciously) that that their child may not breed or would have "unhealthy" offspring if they did (in relation to the first point of autism being seen as bad), and in this belief have hidden feelings that autism has robbed them of their ideal lineage. Their child isn't the child they wanted and they feel like autism has robbed them of their ideal child which they would be proud of, which would show them affection and can carry on their ideal lineage. And so because of these reasons they take out their frustration at not having their ideal child on the thing they feel robbed them of it. In reality however I think it's unfair for parents to want a certain child to make them happy and give them the lineage and whatever else they want from the child, they should accept their child for who they are and not assume that their child is suffering, even if they are because they didn't get what they wanted from their child, ultimately if their child is happy (and just because an autistic person isn't smiling or laughing does not mean that they are sad) that should be all that matters and they should be trying to understand and work with their child to make this happen, rather than working against the child and trying to force it to be more normal. It's just selfish to have expectations for another life form which didn't even ask to be brought into this world. I feel that many (and it's important to remember that I'm not talking about all) parents of autistic children would take their child's autism away even if they knew that their child would not be any happier for this, just because they would be happier.



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14 Dec 2011, 7:57 am

All I want from my daughter is an indication that she's happy (and that doesn't mean she has to be enjoying the things that most other kids enjoy), anything else is a bonus. She's a lot of work and I get frustrated with her at times (and we're working on those behavioural issues, with some success), but I wouldn't change her. If she was NT, I doubt the things that make me the most proud of her would ever happen. I could write a book about those and she's only 6yrs old. She always has to be different and never conforms and I'm more than fine with that. But society, especially schools at this stage, isn't so willing to accept this, which annoys me greatly. I know a Mum with a daughter similar to my own and she's embarrassed. I'm the only person who knows about her daughter's diagnosis, outside of the school/health system, even though she's quite obvious to me. She's the loveliest child you could ever meet and, if she was my daughter, I wouldn't want to change a thing. However, I'm speaking as someone probably on the spectrum too, maybe ADHD, maybe Aspergers, maybe a bit of both.

PS I didn't vote as I don't have a diagnosis, but if I did, I'd pick 1.


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KakashiYay
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14 Dec 2011, 8:43 am

I'm an aspie mom with a little girl who is likely on the ASD spectrum.

I understand where you're coming from, but this is 100% a theory of mind issue. As someone with an ASD, it's difficult to really understand what motivates parents of autistic children, and it's an aspie tendency to ascribe the most negative motive to misunderstood behavior.

You're cool with being autistic. I'm cool with being autistic. I'm cool with my child possibly being autistic.

That said, it *hurts* to have a child who doesn't acknowledge you by offering a hug. It sucks to watch your kid struggle around her peers. It breaks your heart to see her stim when she's anxious, bored, or overstimulated. It's painful to think that she may never live on her own. It causes distress to see how much her 3-month-old baby sister already adores her despite the fact that she takes no interest in her sibling. It makes you feel helpless to not know what your child needs as she lacks the ability to communicate her needs through words or gestures.

Before I was a parent, I was a gung-ho neurodiversity superstar. Sure, offer therapies to *those kids* who are so impacted that they can't speak, smear their poo, rock and scream 24/7, but let everyone else just do their own thing. Then the real world kicked in.

My kid is high-functioning. She may not even be autistic. But the way her brain has wired her makes parenting her difficult emotionally. I don't want to fix her, or make her act normal- I want her to be *happy.* I remember my own struggles and realizing that her delays at 2-years are far, far more pronounced than my own (I had no language issues, and was actually an early talker) tears at me.

Most parents, from the Jenny McCarthy-lovers to those who just bury their head in the sand, just want their kids to be happy, and *any* barrier to that is going to be met with less than open arms.

Every human has struggles and difficulty in life. Those of us with an ASD have a lifelong, different, and sometimes, more pronounced struggle than others. Most parents simply want to minimize those struggles so their children can be as happy as possible.


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Mummy_of_Peanut
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14 Dec 2011, 9:17 am

What KakashiYay has said has also made me think about other parents with differently functioning kids. My daughter is very high functioning, very intelligent, advanced in many ways, with obvious talents and a great personality, if a little over-powering for some. If she didn't have all of those positives, I'm not sure if my attitude would be the same.

I had no behavioural issues as a child (in fact I was scarily perfect in that respect), but my daughter's issues are very pronounced, although she's not naughty, cheeky or disruptive. She takes ages to do anything, appears to not hear, has concentration problems and is hyperactive at times, among other issues. I'd say, the biggest issues she has are probably very similar to those of a child with ADHD. So, parenting her has been very challenging and exhausting.

The Aspergers traits are not so much of a problem to us as a family. But, it would have been nice to have her come to me when she was hurt, instead of needing only her thumb and teddy. As a Mum, expecting and willing to be there for every little cut and bruise, I have to admit that this hurt and I felt rejected. As she's getting older, this is getting better and I feel we have a lovely mother-daughter relationship, at times, except just after school, when I get the brunt of her frustrations. I know the Aspergers traits will be an issue for her, more so as she gets older and becomes more aware of it. And I know it's not going to be a bed of roses, especially as I've lived with similar issues myself, but I feel her future looks brighter than my own.


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14 Dec 2011, 9:59 am

How can I agree or disagree with those sentiments in the text? I understand (or think I do) them more or less, but I could hardly claim I know what is right or not in these situations.

I believe the last sentence reflects to the selfishness of some parents rightly. While understanding that a parent naturally interested in getting a child that can continue their family line, it is unfair with those who have serious impairments keeping them away from the success they themselves may crave for badly. And, if not, that doesn't make any difference.


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TheygoMew
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14 Dec 2011, 1:42 pm

A good video for this is....



[youtube]http://www.youtube.com/watch?v=eWnDPpfpLmM[/youtube]



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14 Dec 2011, 1:50 pm

"There is no understanding what I am saying to him!"

[youtube]http://www.youtube.com/watch?v=hwZyHpDHLGk[/youtube]

Yes and because of this belief, some parents end up saying some really cruel things thinking the child with autism doesn't know what they are saying. Really, the words are repeating over and over in the child's mind later on which triggers meltdowns when the emotions kick in.

If parents would quit projecting and show that they accept their child, a bond would happen. If the parent actually engaged themself in the same interest the child has while teaching a new lesson and explaining why you do this, why it is beneficial, you'll see a difference. The child needs someone to trust and if you are treating the child like an embarrassment or constantly bombarding the child with projections, that child is picking up on it more than given credit for. Even that area can be overwhelming.

Sometimes these parents who get pissed off that their child cannot be an extension of themselves are actually narcissists.


Also I'd like to add. WHERE ARE THE FATHERS IN THE PICTURE? Notice how it's all placed on the female, the mother? Why are the fathers not helping?



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14 Dec 2011, 2:01 pm

Temple Grandin is right. You have to teach these social rules to autistic children. We don't naturally come equipped.

[youtube]http://www.youtube.com/watch?v=nwnlWX4iyj4[/youtube]



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14 Dec 2011, 2:06 pm

I am speaking as an NT Parent:

I personally did not feel any of those things in the original post. At first I was upset when I realized that he was probably on the spectrum, but I didn't know much about it then. I had no idea what I was getting into, how to parent a child like this, IF I could parent a child like this. I don't feel that way anymore, but at first I did. The whole reason for me going on this website was to find out what is in store for my son's future and how can I help him.

I also think it's natural for a parent to mourn the loss of a dream. I wanted my kid to go to public school, play sports, I wanted to be in the PTA, be a class Mom, blah blah. I did not get that, and because of my pregnancy (I cannot carry children) I did not have another child, and I wanted more than one so I mourned the loss of that. There were times that I mourned that life, but even during that I NEVER regretted the child that I got.

I would not change anything about my son because he's really awesome, but if I could change something what I would like to change is the pain that he feels when kids reject him. I wish I could help him with his emotional control because it eats at his self esteem, not by how I handle it but within himself. He's a perfectionist and he struggles with his lack of control. I feel for him when he is missunderstood, when his intentions aren't what NT's are seeing because they are looking at him through their own filters, from their own perspectives. Like a kid with ADD being accused of being lazy, when in fact they CANNOT organize because of executive dysfunction, and then told they are stupid because they can't pass tests. Or like my son's teacher who lectured me on taking away the TV and making my son read all the time because that's what will make him better, when in fact he is unable to make inferences from figurative language and we need to teach him that by starting with a sentence and going from there, not making him do a book report when he obviously cannot, therefore making him afraid of books. These types of things I would change. I also realize that if I had an NT kid that doesn't mean I would have it easier.

I think parents need to have the time to mourn the loss of what they expect from having a family and wrap their head around autism before you can judge how they see it, because with more information and more bonding with their child their perspectives can easily change. Mine certainly has. My personal belief is that if parents were embarassed by their child, or have other issues with their "autism" would have that problem no matter what kind of kid they had. Look at the obnoxious sports parents who's kids never meet expectations with sports, grades or whatever they want for their kids in order to live vicariously through them. Look at the parents that walk around telling people how "gifted" their kids are just because they can talk early, or the parents that want preschool to teach their kids to read and do advanced math when they're 2 years old. :roll: It's these people who would be embarassed by their autistic children. These are the people I cannot talk to without having to control a massive amount of frustration.

So to answer your initial question....I disagree with pretty much everything, and I can say that most parents that I know who have autistic children, and I know several, would say the same thing. They don't want to change their child, but they do want to help them navigate the world with the least amount of pain as possible, as themselves. However, that could be just because those are the people I want to connect with...not the parents of the kids that you describe in your original post.



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14 Dec 2011, 2:07 pm

TheygoMew wrote:
Temple Grandin is right. You have to teach these social rules to autistic children. We don't naturally come equipped.

[youtube]http://www.youtube.com/watch?v=nwnlWX4iyj4[/youtube]


I agree, I remember in her book she said to teach politeness before more complicated social emotional things. I didnt grow up in the 50s but it would have helped to get being socially polite ingrained before I hit a certain age at least we have that go with. Like she said, even today with NT kids. We all know NT kids arent learning manners very well either.



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14 Dec 2011, 6:24 pm

That doesn't sound like my parents at all. My parents aren't ashamed of having an autistic child. In fact, my mom tells practically everyone she meets that I'm autistic. It's almost as though she brags about it sometimes.

Also, my parents get no shortage of affection from me. My problem is actually the opposite - I am overly affectionate, especially with my mom.

She and dad aren't concerned with me "carrying on their lineage" either, because I have two older sisters with 6 kids between them. Besides, mom has reassured me that even if I was their only child, she and dad aren't the type of people who would pressure me into marrying and having children. As a matter of fact, mom has actually said that in the near future, I should probably consider getting my tubes tied because of my strong aversion to children and the fact that I'm "getting older and might have a boyfriend someday".



KakashiYay
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14 Dec 2011, 7:05 pm

TheygoMew wrote:
If parents would quit projecting and show that they accept their child, a bond would happen. If the parent actually engaged themself in the same interest the child has while teaching a new lesson and explaining why you do this, why it is beneficial, you'll see a difference. The child needs someone to trust and if you are treating the child like an embarrassment or constantly bombarding the child with projections, that child is picking up on it more than given credit for. Even that area can be overwhelming.



So my 2-year-old doesn't need or want me because I'm a sh***y mom?

Awesome. Thanks.


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TheygoMew
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14 Dec 2011, 7:17 pm

^ Your child is TWO

nowhere did I say you are a sh***y mom. Why do you expect your child to miraculously change at two? You have to teach this to your kid.

If you are in-fact saying mean comments thinking your two old may not process it, then yeah perhaps I can see why you are offended. If not, this doesn't apply to you.



KakashiYay
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14 Dec 2011, 7:31 pm

TheygoMew wrote:
^ Your child is TWO

nowhere did I say you are a sh***y mom. Why do you expect your child to miraculously change at two? You have to teach this to your kid.

If you are in-fact saying mean comments thinking your two old may not process it, then yeah perhaps I can see why you are offended. If not, this doesn't apply to you.


Yeah, my kid is 2. That's two years of constant interaction and attempting to engage with her. Two years of unconditional acceptance, support, and love. You wanna come over while I dump rocks onto the floor for hours every day, attempting to get her to let me in?

I take huge offense, as both and aspie and a mother, to anything that perpetuates the terrible myth that parents are to blame for their child's inability to connect. The idea that acceptance and love will somehow draw out a child is really archaic and detrimental to both youngsters with ASDs who would, under your concepts, face unrealistic goals (familiar with Floortime/DIR? I suspect not. It's an intensive (and I mean *INTENSIVE*) play-based therapy for entering an ASD kid's world and slowly drawing them out. While it's in line with what you're suggesting- acceptance, getting down and doing whatever the child is doing, it doesn't form magical bonds. It can take years to draw a child out. Some children can never be drawn out. You suggest that, if a kid can't be drawn out and engaged with his/her parents that it's the parents to blame, and, yes, that's a very offensive suggestion.


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TheygoMew
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14 Dec 2011, 7:51 pm

I never did say parents are to blame for autism.

I find it insulting when parents think you are attempting to undermine them or insult them when giving advice and stating the obvious. If you too have aspergers or autism you should understand how mentoring can help you open up more.

Yes your child is two. You're acting as though at two years old, oh that's just it! It won't get any better and how dare you imply it's MY FAULT! I never did say that. Your child is still two and needs love and support. Also, your baby is just entering toddler stage. What do you expect of an infant?? This takes a while and at two years old you should not be acting like you've already reached the end of your rope. A two year old is going to be having alot of tantrums. Why else do you think they call it the terrible twos? Now add on top of that autism and it's going to be difficult but if you as a parent do work with your child or get ABA therapy, there can be improvement over this crying over having an autistic child and doing nothing.

This is not a direct insult. Please quit taking it that way.

I've seen how some parents actually put in alot of effort and yes this starts when the child is having meltdowns after meltdowns usually after 2 is when it's discovered the child has autism. Sometimes earlier but for the most part after 2. So after the parents work with their 2 year old for years there is a vast improvement.

Then I've seen parents who just won't do a damned thing. Their child does not improve.

"Some children can never be drawn out!"

Are you already setting that up as a goal for your TWO year old?

Okay wait a minute, now I am feeling a little insulted. If that is the case, give your child to someone who cares.



KakashiYay
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14 Dec 2011, 8:24 pm

TheygoMew wrote:
I never did say parents are to blame for autism.

I find it insulting when parents think you are attempting to undermine them or insult them when giving advice and stating the obvious. If you too have aspergers or autism you should understand how mentoring can help you open up more.

Yes your child is two. You're acting as though at two years old, oh that's just it! It won't get any better and how dare you imply it's MY FAULT! I never did say that. Your child is still two and needs love and support. Also, your baby is just entering toddler stage. What do you expect of an infant?? This takes a while and at two years old you should not be acting like you've already reached the end of your rope. A two year old is going to be having alot of tantrums. Why else do you think they call it the terrible twos? Now add on top of that autism and it's going to be difficult but if you as a parent do work with your child or get ABA therapy, there can be improvement over this crying over having an autistic child and doing nothing.

This is not a direct insult. Please quit taking it that way.

I've seen how some parents actually put in alot of effort and yes this starts when the child is having meltdowns after meltdowns usually after 2 is when it's discovered the child has autism. Sometimes earlier but for the most part after 2. So after the parents work with their 2 year old for years there is a vast improvement.

Then I've seen parents who just won't do a damned thing. Their child does not improve.

"Some children can never be drawn out!"

Are you already setting that up as a goal for your TWO year old?

Okay wait a minute, now I am feeling a little insulted. If that is the case, give your child to someone who cares.


Okay, now I'm offended as an aspie, mother, *and* birthmother (one who makes an adoption plan and relinquishes a baby/child.)


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