Post

I Hate Autism

I posted part of this as a comment in someone else's story but  feel that it  deserves to be a story in it's own right.

I have a 13 year old daughter who is on the spectrum. She is on the higher functioning end, but every day is still a challenge for both of us. I love my child dearly and I accept her autism, but I would do anything to make it go away.

I hate what it does to her, how it causes her to behave and the things it make her feel and say and do. I hate being unable to reach her and I hate the way her autism has defined our relationship. I hate what it has taken from us and what it will continue to take from her every day of her life. I hate seeing her excluded from the things that other kids do, isolated and friendless because people can't seem to get beyond her quirky behavior. I hate the rages that torment her, she understands that she is different, but doesn't have the ability to change it. Her frustration gets worse as she gets older.

It's hard, I see brief glimpses of the person who could have been locked inside the label and I can do nothing to reach her. She is trapped in her own world, unable to think or express her feelings the way other people can and she doesn't understand why. I hate the lost potential most of all, I see her intelligence but she is unable to express it in a meaningful way so people assume she is stupid. She doesn't learn from her mistakes, consequences have no meaning to her. She will repeat the same negative behaviors over and over again, expecting things to work out differently and it angers her when she gets the same results. Her working memory is poor and she lacks social skills, it's a struggle for her to do the things that most people take for granted.

She is now in her early teen years and I can't help but wonder what the future holds for her. It frightens me. What is to become of her when I can no longer care for her?  I love my child and accept the way she is, but I wish I could make her autism go away, make life easier for her somehow. The rest of the world see her as being broken and they tend to write her off without  taking the time to get to know her, to help her reach her potential. If a cure was available for autism I would move mountains to see that my daughter got the benefit of it.

Autism sucks, no matter how you look at it.

fasterpussycat fasterpussycat 46-50, F 16 Responses Mar 7, 2009

Your Response

Cancel

I have Aspergers (high functioning Autism) and I am 17 years old. Guess what? She just needs to learn social skills. Quit being afraid of what will happen when your gone, and teach her life skills. Give her some simple chores, have her help cook dinner. Quit feeling sorry for your Daughter all the time! Many adults with lower functioning Autism are living independently, so your daughter can, too. It's just a matter of making sure she learns what she needs to. It's hard, but if you sit there feeling sorry for yourself and your daughter all the time, you'll be holding both of you back, instead of progressing forward.

Encourage her to do well in school.
Many people with Autism are very good at math, science, music, and/or art.

I understand that it's frustrating, that sometimes you guys don't seem to speak the same language, that sometimes as a parent you worry about whether your child will have friends or not, but worrying all the time and blaming your daughter's autism for everything will just make things worse for her.
As for worrying about "the future" let her decide what she wants to do, and be supportive

Hi. My son, Anthony, too suffers from the same things your daughter does.
Yes, autism sucks and I would climb that mountain with you to find the cure.
Some days I have so much patience with him. Other days, not so much.
I love him. I hate how others can be so mean. I just think its so unfair.
I wish you and your daughter a smooth journey ahead.
Good luck.

I was once in a local gas station where I heard a highly unusual but shocking horror story of an autistic guy who unexpectedly hit an unsuspecting customer full force. He waited til she was turned away when he did it. I'm not sure how bad she was hurt, but I as an abuse survivor, would've definitely defended myself. This is something we don't normally experience in ANY of our local businesses. Such ppl r ticking time bombs that don't belong in such settings.
I don't blame those who explore the adoption option, since specially qualified ppl can properly handle this better than the average person can.

hi fasterpussycat I have a four and half year old and liveing with autism everyday is sooooooo stressful im in tears at the end of it . Im with you too if there was any cure i would move moutains as well . My four year old has about four to five meltdowns a day . Im a mess at the end of the day expresses his anger through hitting and screaming . He cant express what hes really angry about , kids his age are noticing he is different from them but my four year old doesnt know hes different from them . That will come in time and hope i have the right words to explain to him . mishy40

My son just turned 6, and he hasn't started school yet. We have a wonderful private school in a neighboring town where he receives speech therapy and we would love for him to attend on a regular school schedule, but when I contacted the special education department in our district, they made it clear that they "would not be paying for him to attend there unless it was found to be absolutely necessary". Don't they realize that they wouldn't be paying for it? The state would be paying for it; yes, the district here wouldn't be getting that money, but they aren't getting that money right now anyway! They also told me that they have only approved for one child out of the entire district (the biggest district in the state) to go to the private school. <br />
I have seriously considered home schooling as well; I worry about the lack of socializing, but my son is not social anyway. He has five brothers and sisters, and mostly plays by himself. <br />
I think that I am going to at least give home schooling a try, see how he handles it, and go from there. <br />
I am so thankful to find this message board; I have seen so many that will not speak of the crime of autism, which has robbed us from the child that could have been. God bless us all.

That right, education is a constitutional right. I have paid over $150,000 of taxes throughout my 15 years of owning my own business. When I told the school district this they started to work with me on every level. Be determined at the IEP meeting, be strong, and fight for your child if it's the last fight on this planet!!! Bring proof of everything ( taxes paid, lebermans promise, etc..) ! FIGHT!!! especially for the one on one aide.

I have the same fears of high school for my son too. He is still in elementary school, so I have a ways to go. The only advise I can give to you is call for a meeting with your school and have an IEP written for her. In the IEP let them know you want a one-on-one aid. This person will make sure she gets to the right class and is supervised and may help her over the anxiety of it all. You have lots of rights, your child has a disability, get every bit of help you can through the school system and the state if need be.<br />
<br />
Good luck!<br />
Deb

Thanks for your comment seeksantuary3. I understand how emotionally draining it is trying to deal with schools and life outside of the home. I am happy to hear that things have worked out so well for you and your child. I am really hoping that some of the autistic traits will lessen as my daughter grows older.<br />
<br />
I have given much thought to home schooling, but I don't feel it 's an option for us. I admire you for having the strength and determination to do it for your son. I am a single parent and my daughter's sole caregiver. I couldn't handle schooling her as well as caring for her 24/7 and still maintain my sanity.<br />
<br />
Along with autism, my child has adhd and oppositional defiance disorder, her behavior can be very trying. The time she is at school is my time to relax, renew myself and get things done. I don't think I could continue to care for her full time if I didn't get that small break while she is at school.<br />
Sure, it's frustrating trying to deal with the school, but it's a trade off and right now it is the only option we have.

I'm sorry to read of all of your experiences, I remember the same type of feelings and experiences when my son was younger. <br />
<br />
I was so emotionally drained by they time my son was 11 that we decided to home educate. It gave him time to be free from all the people problems. He was able to concentrate on his lessons and choose to socialise when HE wanted too. ( I am not promoting home education we were desperate and it worked for us)<br />
<br />
Now at 17 he is at college, part time, studying to be an electrician and works 3 days a week. <br />
<br />
As he grew older the Aspergers has slowly gone into the background and every once in a while it pops its head up just to remind us its still there.<br />
<br />
I write to give you hope that things can get better and wish you all well on the path you tread.

My sons memory is also poor, yet he can remember things from when he was a toddler, even a conversation will stick in his head and he can repeat it word from word (sometimes at the most inaproprite moments) oh those questions!!! LOL

No, it doesn't seem like you are rambling at all MD. Our children seem to have a few similarities, it's good to communicate with someone who understands what it is like. Routine is important to my daughter also, any change in the usual daily routine brings on endless questions. Her working memory is poor so she will ask the same questions every day and then question the answers she is given. <br />
As you said, it is hard to explain some things to a NT child, for a child on the spectrum it can seem almost impossible. Just when I think she gets it, she'll come up with more questions LOL<br />
I get frustrated sometimes but then I realize how confusing it all must be for my daughter.

I have had the same problems with my son, as he is getting older, he's started to realize that he's 'different' from the other kids, like you say, he tries so hard to be 'normal' that it all becomes too much for him and he vents all his frustrations out on those closest to him. I have to keep our daily lives to the same routine, day in and day out. Even the slightest change affects him, like if we take a different route to school one day. The endless barrage of questions we get if we do something slightly different.... I've also noticed the past few weeks he has become concerned with the news, he's petrified at the thought that something bad will happen to him, it's hard to try and explain things like this to a 'normal' child at the best of times, although I've tried to sit him down and talk to him properly about it, he will come out with the same questions the next day. I'm sorry if my comments seem a little rambled at times, it's nice to find someone who is going through the same situation as I am! I hope the authorities will listen to you're concerns, you're daughter has every right to an education.

My daughter was supervised at her last school and she was escorted to her classes. The high school school system just doesn't seem to operate the same way though. The kids are given more freedom and more is expected of them. She does not have one aide who works with her all day, rather a different one at each class. The aide is there for all the special needs kids in that class and can't possibly give each child the attention they need.<br />
<br />
To people who don't know her, my daughter appears much higher functioning than she actually is. She struggles to make it through the day and appear 'normal'. Since she hit puberty it has become important to her to not seem like she is different than anyone else. It takes all her energy to maintain this facade and when she loses it, she loses it big time...<br />
It also makes it difficult for her teachers and aides to realize the deficits in her executive functioning. They tend to expect too much of her until she loses it or starts screwing up... and by then it's become a big deal.<br />
They do what they can I suppose, but with so many kids<br />
it's tough to monitor a few. Kids like my daughter fall into the cracks and get lost. It's very frustrating.<br />
<br />
I think she would do better in a smaller school where she can get more one on one attention. I wish I had been aware of the alternative school option before she started this year at the local high school. It's gonna be a fight getting her to change schools now, but it scares me to see her becoming more lost in the system every day.

My son has had problems getting to and from class also.He currently has supervision from staff in the school he is at now. The high school is a fifteen minute drive from our house I'm petrified of him wandering outside...luckily, the school where he is at now is working hard now to prepare him for the future, going to high school is a big step for anyone, but for a child who becomes distressed with large crowds and loud noise, it's going to be torture. I hope you find help for you're daughter, I totally empathize with you.

Thank you MoonlightDances.<br />
My daughter started high school in September and it hasn't been easy. Like your son, she has no sense of danger and the level of supervision in the high school is much less than at elementary school... even in the 'special' program, her needs are not being met. Just getting from one class to the next has been a problem for her and she has started to skip classes. The school is so big, she gets lost and can't/won't ask for help. It's very frustrating for her, she has total meltdowns when she gets home most days.<br />
I'm looking into an alternative school for next year, you may want to consider that for your son also.<br />
<br />
Good luck, I hope your son has a better high school experience than my daughter has had so far.

My 12 year old has spectrum autism, in a few years he'll go to High school, i'm worried sick about how he'll cope with the massive change to his life, and how he will travel to school. He has no road sense and no awareness to the dangers of talking to strangers. I wish you're daughter luck in everything she dose.x