What is your biggest fear for your child with Autism?

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I'm terrified of what will happen when I die or am too old to take care of my son if he is unable to do it himself. He's very young so I have no idea what the future holds for him. Group homes are awful here, everyone is neglected, no one cares about quality of life, they just keep people alive. So many people end up regressing in some of the places around here because they are squished into homes with staff who have no training. People with severe auditory hypersensitivity are in the same house as people who are screaming and breaking things every day. My boyfriend works in the field and the things he sees are unimaginable.
I want my son to enjoy every day of his life as much as possible and I'm so afraid he will be neglected or mistreated when the day comes when I can't care for him. I don't want him to feel abandoned and alone. I am hoping that if he is unable to fend for himself he will at least manage to have people around him to love him and look out for him.

Regarding the "R" word and its ramifications: we are slowly getting there. The fury unleashed in the US when a comedy movie made use of the term has started a movement where people with cognitive disabilities are standing up for themselves and showing the world they are individuals with feelings and value. I think very, very slowly, we as a global culture are starting to come around to the idea that everyone has a place in the world, and the right to seek out that place - pursue happiness, if you will. We're starting to learn that we've been shortchanging the cognitively impaired in particular, and finding better ways to be inclusive and tolerant.

I like this video by the National Downs Syndrome Congress (many people with Downs also have a cognitive delay) http://youtu.be/-cA3t1HW1Ow

While I understand the fear (if nothing else, every diagnosis pretty much means more work for parents,) I remember the days when our biggest fear was to have a child with autism. It looks scary on the outside, but I think it's like anything else: your kid is not a diagnosis, they are yours and you love them.

my biggest fear is that my daughter will be alone, or lonely.

I really worry about dying early, it makes me cry thinking about it. My son is lucky as he has 6 older brothers and sisters but says when I die he is going to kill himself.

He is very tall for 13 so more is expected of him as he looks around16. He also has dyspraxia quite bad so people think he has a interlectial disability which he hasn't. As he has been home schooled he has not been teased so his speech dose not bother him.

I try to dress him in the latest fashion but as you all know this can be hard. He may want to go out with tshirts inside out lol

I had my son when I was older, and he is an only child. My biggest fear is that he will not have anyone to look after him when we are gone (if he cannot do it himself). I agree with another poster, I am not as concerned about what his grades are. Of course I want him to learn and be able to graduate high school, but I am more concerned about teaching him life skills.

I also worry that I overprotect him too much. But he is clumsy, and I am always watching him to make sure that he isn't getting hurt. He does not always pay attention to where he is walking or what he is doing.

I also worry that he will end up alone and lonely as he has pretty much zero desire to make any friends at this point. He is almost 7 and has never had a friend and has no desire to.

These are my worries, and I cannot do a thing about any of them except do the best I can to teach him how to take care of himself.

My concerns for my son are that he will look the part of normal, but never quite fit in. That he may never know pure joy, or find comfort in a relationship with a true friend. He is brilliant, but tragically suffers from depression, so between bouts he can function, but I fear for the day that I am not there to scrape up the pieces. I fear that he may not be able to hold a serious job for any length of time. I fear that he will turn to drugs for comfort and escape. A beautiful human mind, so smart, so capable, but so burdened.

My biggest worry is that my children will feel sad & alone because they will be unable to communicate.

Hi All,
Putting this question out to the universe:

Does anyone have a particularly successful means of dealing with your child's chronic depression other than pharmaceuticals? Our son can't take SSRI's. He becomes even more suicidal on them. We would love to find something that really makes the kiddo feel better, his complaint is depression, anxiety, irritability. He's 13. He's having trouble keeping normal sleep patterns, wants to sleep in the afternoons, up all night, etc.
THanks,

Treating the anxiety would probably help the depression. I got depressed because of chronic anxiety when I was young. Anti-anxiety medication helped me more than anti-depressants, and of course if he isn't doing it already he should be doing therapy. Also sometimes anxiety is circular. You get anxious because you know you're always anxious and you don't like the feeling. You get afraid of being afraid. It ends up going in this infinite negative loop. You could teach him about the fear-adrenaline-fear cycle so that he can understand that anxiety is his body playing tricks in him making him think he is in danger. You get afraid, your adrenaline kicks in, and then your fear just gets worse. Find any way you can to help him sleep at night, lack of sleep makes people much more anxious and depressed. I used to get anxious trying to sleep, it helped me to fall asleep watching tv or reading, so that I didn't have to lie there thinking waiting to fall asleep, I would just slowly drift off while I paid attention to something else. If you start a new thread asking this question you might get more answers. Most of the people looking at this thread will be parents, you can probably get a lot better answers from the people here who struggle with the same issues.

Thanks, I will do that.