Who worries about their child's future?

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Thank you for having the courage to point that out. While I wouldn't wish physical illness on anyone and don't mean to belittle the problems it causes there is so much less stigma attached to it and it is easier to find help for something most people have some knowledge of. Our brother majored in Psychology in college, our mother was a psych nurse and yet I have to constantly explain to them why my sister behaves as she does. If she had diabetes at least her own family would understand her and she could make friends much more easily and every day would not have to be such an ordeal for her.

I kind of get a little upset about this.
Do you not sell your son short. Having low expectations will honestly set him back more than anything. Remember, this is mostly a developmental delay. I should note, I have an ASD, I also have a Doctorate. This is not an intellectual disability, it is more of an emotional and communications one.

I should note this, him being a bit more of a recluse is normal for folks with ASDs. It does not preclude though indipendant living. I should note if he is good at math and is interested in computers, he may be on the path to be a computer programmer or engineer. My partner is a computer programmer, he primarily works from home. He does not have an ASD, he has AD(H)D. What I am saying is an interest in technology has kept many people with ASD and ADHD employed. Engineering and computer programming is pretty open field for people with ASDs. They are also fairly well paid professions.

My point being is he may have a different lifestyle, but you should not sell him short. He will grow up, just he may be different. I am not saying his life will be easy, but ASD are communication issues, but not intellectual ones. Right now you are making a projection, a projection that you should really get out of your head. Some people with ASDs do well, some do not, alot of the success has to do with how one was raised and the expectations that were put forth. But I can tell you while life transitions are a bit more difficult, they do happen.

I highly suggest you watch Adam and Big Bang Theory. Independant living is not out of reach for people with ASD. We learn different, we have to adapt differently and communication and emotional issues may persist, but this does not mean we are static individuals. We do grow.

With that being said, you are projecting way to early, he is still a kid and development for people with ASDs is very atypical. We may struggle with something academically, and then make great leaps forward. Because we lie so far outside of NT experience of childhood and development, it can often be confusing and disconcerting. One of the problems is the little things. NT parents tend to put way to much stess on the little things.

Let me state the big things.
1. Academics
2. Issues pertaining to bullying/harassment (basically safety)
3. Being patient parents.
4. Making sure he stays out of trouble

The biggest issue you need to worry about is academics. Notice how I did not mention once socializing. It is not essential, if it develops it does, but it does not predict indipendant living for somebody with an ASD. Academic achievment and development of career worthy skills does. University, university, university is how I put it. Right now, its too early to worry about that. But pushing good study habits is MUCH more important than pushing social or "life skills" (as I like to call the little things). If he is happy alone, let him be so.

But make sure he is doing okay and is on pace academically. It is by far the most important thing for a person with an ASD.

I should note...I pushed myself to get a doctorate because people are MUCH more forgiving of quirks with ASD when a person has an advanced degree.

What I am saying is do not give up. People I know who do evaluations for kids with ASD kind of lament of the fact that parents never get to really see the people with ASD who actually do pretty well in life. That it is not a static thing, and that while there may be struggles, it doesn't mean that the kid will never grow up and mature.

The point being is giving up hope is really bad, your son has alot of potential, and you need to look past the struggles he is having now and see the potential.

It is good to remember, that Albert Einstien, Tesla, many of the scientists on the Manhattan project, Bill Gates, all have or had ASDs. Without folks with ASDs modern technology really would not be the same. This is not a debilitating disability that prevents one from becoming a successful adult. It is one that makes life tougher, but it also opens up possibilities. You also need to consider those possibilities.

By the way, I did speech and occupational therapy for two years when I was growing up. I reached a point where they said I was doing well enough I did not have to continue. That does not mean I did not have problems, but things began to improve slowly after it, and drastically two years down the line.

Lastly, please do not sweat the social stuff. This develops a little different for everybody, and it is not indicative of how successful one is at life. I never had this "social therapy" things. I think they are a total waste of money. This is something that needs to develop on ones own terms and ones own way if there is an ASD. Outside of dealing with bullying issues, one does not really need to get involved to much in the social aspects of your childs relationships. If they prefer being alone most of the time, there is nothing wrong with that. I don't think many NT understand how important this time alone is for people with ASDs. Don't sweat the little things or the social stuff.

I am not big on socializing myself. I have been blessed with a small group of extremely loyal, wonderful and protective friends and have no desire to belittle those relationships by seeking out others. When my sister moved in with me I told her that a few quality friends are better than a bunch of fringe aquaintances basically collected to prove likability. I have included my sister in activities with the friends I have when she has wished to join us with the specific purpose of her being able to see how decent people treat their friends but I have not pushed her to make friends or socialize and figured she was happy spending time alone. Then she broke down sobbing and exclaiming she was so lonely she "couldn't stand it"

I don't want to sound insensitive however.... I really struggle with this kind of thinking. I know that, when a diagnosis is very new, parents have every imaginable thought, fear, and question run through their mind. I know I did. But... once there has been time for the diagnosis to set in, for research and reading and connecting with other AS parents, then I really struggle with parents continuing to express this sentiment.

Mattmom, I don't know if anyone else feels this way, but speaking for myself personally as the mother of a most magical and wondrous little boy who is frankly MADE wondrous and magical by his autism, I cannot relate to the feelings you have expressed. I worry that - at least in terms of the way you have expressed your feelings - you are viewing your son as an impediment to what you previously felt would be your destiny.

Your son IS your destiny.

Autism IS your destiny.

And what I believe you need to come to grips with is that it ABSOLUTELY WAS supposed to be like this.

I don't think you are so much worrying about his future.... as you are worrying about your own. I know that may sound harsh... and I apologize for how blunt it may sound... but I am trying to be honest with my comments based on the way you have expressed your concerns. I could be completely wrong and I may have misread the way you have written your thoughts here... but I think you need to do some soul searching in terms of how you view your son.

Children are not sent here to make our lives easier. They are sent here to teach us something. So I guess my question would be... are you open to embracing your son's autism and learning from it? If so... then I think you need to reframe your thinking about your own life, and what it was 'meant' to be.

I hope you'll understand that I've shared these thoughts with nothing but the kindest of intentions.

I don't know if this would work for everyone, but I found it really helpful to do something proactive about my worry. Anxiety is a lot about feeling out of control, you know? I was feeling really freaked out about what would happen to my son if we died, so last year my husband and I set up wills and a special needs trust for our son; it's set up so that if he is able to be an independent adult after we're gone, he can break the trust. Otherwise, he will still be able to get government support, assuming there is any left.

This isn't a perfect answer, because it's not like we have tons of money or anything and there's no one I feel really confident would be a good person to raise him besides us. (Except my mom, and she's aging and not strong.) But still, knowing that the system was in place took away a lot of my anxiety.

Is there anything you could do right now that would make you feel your child was more protected?

(edited to add in missing words.)

Last edited by willaful on 22 Mar 2010, 6:54 pm, edited 1 time in total.

While I cannot speak for Mattmom I don't think she has given up on her son at all. What parent doesn't want the best for their kid? What parent doesn't want a mentally and physically healthy kid who will have an easier time navigating life? I love my sister and want her to have the best life possible and I refuse to give up on her but damnit, if I could make Aspergers magically disappear and spare her I would.

You said it, AlphaSister!! !! !

I think this describes how a lot of us parents feel exactly, Alpha Sister!

It may describe how many people feel, but not all. If Aspergers disappeared, the little boy I know and love would disappear with it. Would I make the world more sensitive and accommodating, more compassionate to people with differences? Yes. Would I ensure he could be himself and never be bullied or have his self-esteem damaged? Yes. Would I change OTHER PEOPLE so they could accept and cherish him for who he truly is? Yes.

Would I get rid of Aspergers? Absolutely not.

If you are worried about housing issues and stuff like that, it is worth looking into what our Portland Aspergers Parents Group is looking into: Independent Housing projects.

Once I know more about it, I will try and post a link about it on here. I talked a little about it on one of the other threads. I can tell you that it was very encouraging to know that there may be something that can be done for living situations for my son once he decides to move out. (He isn't old enough to yet though) And that I won't have to worry about him when he outlives me!

Oops, that should have been worded as: Independent Living Housing Projects.

I am encountering waiting lists and severe cuts in mental health funding. My sister has also been diagnosed with depression and it seems the only way to get any help for her is to stress the depression diagnosis as there are simply more organizations working with mental than developmental issues.

alphasister: I noticed that about the mental vs developemental issues also. Pick the one that will get the most help, and stress it. Yes, we do want to "be positive" but when doing paperwork for funding and assistance, you have to stress the negative. Hard to do but from all the threads I've read from other sites, it seems the thing to do to get the help you need.

I am not worried For my child future everything is on God...So I leave everything is on God only i dont care about my child future..

I worry a lot about my NT son actually. My AS son is very very much like me, it's easy for me to understand him. I expect him to grow up with good grades, finish college and find a geeky job. Unlike other little kids who want to be firefighters or astronauts, he wants to be a game designer, and I do think he'll make a good one. Hopefully with a good job plus his good looks he'll be able to get a woman.

My NT son on the other hand has average intelligence, no obvious talent of any sort, is very shy and quiet. He's very loving and emotional, and easily discouraged. I seriously worry that DH and I might not do the right things with him. To be honest we totally didn't expect to have a child with average IQ, everybody else in the family got at least 130. We really hope we won't screw up and raise a child with low self-esteem.

I worry about her having her feelings hurt by others. Already in first grade one particular boy was being mean to her and she was getting upset by it, I told her to ignore him and stay away from him but bless her little heart she could not understand why he did not like her so she went out of her way to be nice to him, which just made him be even meaner because he knew she would take it to heart. He told everyone in class that she had a disease and encouraged the other kids to tease her and not play with her. I reported it to the school and they intervened. His parents were contacted a couple of times and the school counselor met with him & my daughter separately and then together to try and work things out. The boy is a lot nicer now, my daughter reports, but even though he told the other classmates that she doesn't have a disease and that he made it up, some of the classmates still tease her about it.

I guess that's one of my biggest concerns. As she and her classmates get older, I fear she will stand out more for being different and be the target of bullies. My daughter is very sweet natured and cannot fathom why the other kids can be so mean. Instead of ignoring them or keeping her distance from the mean ones, she goes out of her way to be nice to them because she cannot understand why they are acting that way. She will tell me that she gave them compliments and everything and that they were still mean to her. She used to bring stickers and things to school to give to people because they told her they would be her friend if she did. Very sad and it makes me want to go beat up some little kids...