Is my mom holding my brother back?

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Hello everyone. This is going to be really long, but I hope that someone will read it and have something to say to me.

A preface: my family is very poor. Mom is a single mother, dad is not in the picture. Mom lost her job after attendance issues stemming from my brother (let's call him Jake) and she was never able to find another one. They both live off his social security disability money. Jake, age 21, has Asperger's. Now I haven't lived at home for almost six years now, so I don't know the FULL story of this stuff, but I will describe the situation.

Jake was diagnosed in elementary school, was in and out of intensive therapies, on various drug cocktails and at special schools throughout his adolescence. Now I think he's only on one or maybe two medications, and he went to a normal high school for his last two years. Now he only sees his psychologist once a month (it might actually be every two months). Basically, he made incredible progress. He won a 2-year scholarship to a community college and attended that with a mix of A, B and C grades... he didn't actually earn an associate's degree because he never finished the math requirements. He used to talk about how he wanted to study psychology and work with kids like himself.

For a little while before his scholarship was over my mom was talking about him attending a university, but now she isn't. She's really afraid that he'll take loans to pay for it, but if he can't get a job afterward he might not be able to pay them back, in which case they will withhold his social security money and he will be "screwed." She doesn't think that he'll be able to get other scholarships because he didn't have great grades. So she doesn't want him to attend a university. She's also worried that he won't be able to "handle" university life: classes, social aspects, living in a dorm room, etc.

He has never had a job. She has never encouraged him to get one. He used to volunteer with elementary students, which he really enjoyed, but now he doesn't (I think transportation was an issue - they don't have a car). He used to go to Tai Chi/martial arts, but when the instructor said he would need to start charging payment, they weren't able to pay for it so he doesn't go to that anymore. I know that the tai chi REALLY meant a lot to him....

While at the community college, he would often meet friends on campus. But with him not being there, he isn't ever able to meet with them (for some reason? transportation?) and so he doesn't.

Basically, he never. leaves. the. house. He sleeps all day and stays up all night.
Last Thanksgiving, he was ASLEEP THE ENTIRE TIME that a bunch of friends and family were over there.
When I ask my mom why she puts up with things like this, she just says "You know your brother is different." Why isn't he on a normal sleep schedule? "That's just the way he likes it." When I ask him why she doesn't force him to get out sometimes, she says "He can't handle social situations / he hates the grocery store, he hates standing in lines / he hates this / he doesn't like that." When she goes to the grocery store, she'll ask if he wants to go, and he says no, and she just says okay. I feel like she should make him go sometimes...

Now I realize that my brother is different, and he may have his quirks and he may prefer to avoid certain uncomfortable situations, but I feel like it's a little ridiculous. My brother is intelligent and, while he's quite socially awkward, I feel like he is perfectly capable of living a reasonably normal life, and taking care of himself and his own home financially and emotionally. I get the feeling that she has given up on him and has just accepted that he will never have a "normal" life and will live at home forever. I don't know if she's "given up" on him, or if she just thinks he's incapable. Does he stay at home and sleep all day because he really can't "handle" things, or does he do it because that's just a default mode and nobody is pushing him towards being social? I tend to feel like it's the latter... in the past he has been out of the house more and he was just fine. I don't think anything happened to scare him into never wanting to leave. I think that without encouragement, he'll just slip into a default. I mean, when he's alone for a good stretch of time, he does things like forgetting to eat or forgetting to brush his teeth. He'll do it if he's reminded (which he could be by phone calls, emails, etc. if he were alone). If he isn't encouraged to leave, he won't.

What do you all think?
I know that there are many levels of Aspergers and everyone is different.

I guess, really what I'm asking for is stories from other people who have been in these situations. If you're aspie, what did your parents do for you when you transitioned from teenager to adult? If you're a parent, what did you do? Perhaps some recommendations of books for parents or for aspies in these sorts of situations would be good as well.

Thank you for taking time to read this.

Great you care about your brother a lot.

It is very difficult to answer your question without knowing your family or your brother for real. Transition to adulthood is one of the most difficult periods in autism. You had the connections with school and everybody goes away to college or jobs. You can end up isolated fast.

It is not uncommon for persons who don't work and have autism to experience difficulties with night/days or coping with loneliness. Issue is the risk of having bad people around you or being in trouble with the law.

It would be best for your mother to push your brother to develop "adult" skills maybe through volunteering or some community activities. Staying home all day will not be a good strategy to help him develop a good spirit. Helping him develop his interests would be a good start if he has any.

If she prevents him from failing, she prevents him from learning from his own mistakes. It's safe but it doesn't go anywhere.
I know that in some cases lack of support or financial issues (you mentionned it) can be a problem and that disability money can play a role in parents' decision. Maybe you should have an open discussion with your mom without your brother around if you want to share your feelings with her.

As a parent of two atypical kids, I find it very easy and quite comfortable to coddle them under the guise of protecting them.

But I won't do it.

Because as a parent, my job is to help them to become "the best me I can be." That means all of us stepping outside of our comfort levels. It means allowing my 6 year old daughter to go to a birthday party by herself without me being there to protect her or prevent issues. It means allowing my 10 year old son to stay home "by himself" while I run to the store for 15 minutes.

You know, many schools have scholarships for kids with ASD, ADHD, etc, that are not only based on grades. Has anyone looked into that?

At any rate, it sounds like he is going backward. I can't see how that can possibly be a good thing.

What does your brother think of all of this?

My son is only 6 so we aren't there yet. The thought just occurred to me that you might get more response to this over in the General forum. There are certainly adult aspies young and old who frequent this forum however, many more, probably some in a similar situation as your brother is in right now, frequently post in the general forum and not over here in the parents' forum. The transition to adulthood does seem to be especially difficult for people with ASDs. I was looking at our recommended reading list and I don't see much about this though I know there have been some good books discussed here before about this transition. One that is on the list is Asperger's Syndrome Guide for TEENS & YOUNG ADULTS Thriving (not Just Surviving)" by Craig Kendall.

Your mom might herself be struggling to let go and is inadvertently enabling your brother to remain in the pattern he is in. As difficult as it may be, it sounds like they could really use your support and input.

It sounds as if Jake and your mother have fallen into a semi-comfortable though, meager, routine. I doubt Jake would benefit from a lot of prodding. Though aspie, he is 21. Prodding young men simply doesn't work, they push back in the opposite direction (especially when it's Mom doing the prodding). Yeah, aspie young men are the same in this respect. Your Mom most likely has tried this and knows.

I, of course, know even less about their personalities and proclivities than you. But their situation suggests some things to me.

Your Mom is probably suffering from low grade depression; functions well enough to get out of bed and do what's necessary to keep body and soul together, but not vital enough to strive for change. In my town low paying jobs are available. ($250/week + benefits for 30 hours work in a supermarket won't light her world aflame but it beats what she's got).

Your brother sounds depressed also. Again, it's not your mother's responsibility to provide for martial arts classes for him. She probably truly cannot afford it. He also could get the same sort of job I referred to and provide for his own personal outlets.

As for college; I would not press anyone who attended community college but failed to complete because of not doing the math to try college. Mom's absolutely correct about the loans and until Jake decides to tackle finishing the CC math, college makes no sense.

It's most likely true that your mother's got nothin' that can motivate Jake. Mom's own stagnated working life has set a discouraging precedent. But, Jake's an adult, motivation needs to spark from a different source than Mom and then nurture within himself.

I will also assert strongly that further education, even if he could finish college, would likely not lead to a career unless and until Jake develops the ability to function in the workplace first. Professional employment in today's workplace is competitive and employers are looking for graduates with proven stability & work ethic in previous non-professional jobs. That goes for everyone.

Jake has the added burden of his social awkwardness. I work in a supermarket (which I actually like) where I have at least 10 aspie co-workers. They are all competent workers and I think their success at functioning well in the work environment boosts their confidence significantly.

It's Jake's own time that he's wasting. He holds the key to his future.

I think a lot in life depends on how supporting the environment appears around ppl. If there's a lot of negativity or too much of pointing out what someone cannot do you actually take them the faith that they can. I don't know how it is in your family.
We often expect kids to have this or that step of development at a certain time/age but this isn't true. Ppl can be very intelligent but still need longer to understand certain things.
I think your mum has given up and accepts things as not changeable. Which isn't true. Overprotection makes ppl indirectly helpless and your brother sounds depressed too. Positivity and support, understanding can help a lot. It's never too late to change things.
Einstein wasn't good at maths either. My son has problems too. He kind of lacks to imagine it in pictures. So he hardly understands the logic or the connection between stuff.
I think you shouldn't give up. I am quite sure he can lead an independent life as well. Why not? Think of his strengths, what is something he really is good at? That's the basis to work on. I hope things will work out. Ppl need to believe in each other. I know it's easy to point out other weaknesses. But this leads nowhere.

I don't have the tine to think up a serious response right now; but during Thanksgiving he probably stayed in bed because the party was too much for him. Parties and such are bad.

Baaaaaaaaaaad...

Especially concerts.

Hello. I hope you dont mind if I answer, even if my English is not the best.

There were some points i read in your texts, which i like to write about.

First: I really see, that you care for your brother, and that you are bothering of him.

But beside that, i also see, that there are still points, where you do not understand your brother or how he feels, how he feels to be around etc...

I also am more awake during night, it is really my "fresh" phase. Its not physically or genetic that i want to be at night, but during day there ist always Noise. Airplanes, Cars, Air-Drainings from industrial places, TV from the Family, Doors, walking sounds, dishes from the kitchen, PC-noises, people talking on the streets, telephones, family members using water supplies in the house (which makes noises in the walls where the pipelines are...) and all that is bothering me, forcing me to push every thought i want to have, every thing i want to focus on in my mind to force it through all that noieses and disturbances, making me more and more tired during day, stealing my energy i neet to manage my day.

At night, when evereryone is sleepung, i suddenly feel fresh. I can think, i´m not tired all the time, not to tired to do the things i must do like housework, but also not to tired to do the things that i like, that makes me having fun and enjoy my life.

Also the thing with the Thanksgiving Dinner. Why is it so important, that xoure brothers works as a clownslave for your friends and family. Please dont get angry, i know, that this isnt what you thought about, why he should join you. But this is how it feels. You sit there, because you want to sit there, you enjoy it and have fun with it. You have a profit from that behaviour.

Now if your brother would join you, and act like a neurotypical being, what would be the result: You and your friends and families would have more fun, enjoy the eating more, would benefit more from it. Your brothers day on the opposite would be totally in the ass, because first he had to work hard for you until his limits. Talking things he dont want to talk and is not interestet in them, which is complicated and costs you lot of energies always technically analizing the issue oft the talking, to think about, what you should ask now to enjoy the opposite, how your face shoudl look like to enjoy the opposite, beside the fact to always hide you're real face because everyone is screaming and laughing and making noise und terrorising you and all you want to do is run away from the place. And while supressing the feeling for crying and running, feeling your heartbeat way beyound a 100 beats per minute, you force your face to express a smile, focus the face of the opposit and say "Oh this is sooooooooo interesting! How did it go on?"

Dont get me wrong. I know that people do this, because they are enjoying it, and i really like my relatives and friends and want my realtives and friends to have fun and be happy togehter. But they can have that together all along, so why should it be necessary to force me to play the Clown-slave?

With slave i mean, when you hire a clown, you expect that guy to pretend having fun being around you, which is hard work, to make you happy. And as a respect for his hard work you pay him, because ist logic for everyone of us, that noone would do the hard work of entertaining us without having fun of his own, without payment. And relatives or "freiends" who force me to be working until my physically limits for their private entertainement, making me a slave for their amusement, are not my friends. Friends do not force each other to do things that makes them sick, just because having a little more personal benefit. So if they are not my friends anyway, why should i join such meetings anyway?

But now lets get to the point, at which we have the same thought: That he should look for getting independent in one way or the other. If he wants to settle he activities at night, its his choice. If he does not enjoy family meeting or great friends gathering in your place, and do not want to entertain you without meaning, its also his choice, its a private thing, and in his private time its his choice, what he is enjoying and what not. But just like you use your chosen daytime to get independent sooner or later, by learning or doing a job, doing your houseworks, cloths etc... he also has to find a way to do these things. He can and and will have to find his own way to get there, but at least he has to get to the same point as you.

As i told you, all the days acitivities are bothering me. Ok. So i learned during night. ^^ Yes maybe most other kids learned during day, but i had to go another way. But it isnt important, because at least i got to the same point, doing my school work, doing my tests, pass school and with that have a chance to find a job. In which i also have to go my own difficult ways, but at least i get to the same goal as my sister. Receiving money for my work for being independent. (Yeah, shes earning much, much more and so on, but its enough for me to be independent and have my hobby. Thats enough for me.)

So i really dont agree with you on the private points, like entertaining family or when he wants to set his daily activities. Because these are things, which everyone should decide on his own. But things like eating, having water supply, pay the electricity bill are not optional. And that your parents wont be around until the end of days is also not optional. So he should use his time finding HIS way to achieve being independent sooner or later, for his own sake. The earlier he starts, the more time he has for finding a work which really fits him.

A couple of points stuck out to me in your post:

They both live off his social security.

There was no mention of what your brother thinks or wants.

Here is the thing: changing the situation for both your mother and brother will involve risk. But it sounds like your mother is afraid of risk. Your brother may not have either the skills or awareness to assess or take risk, and may be relying on your mother's judgement. If you know your brother wants something, it could be worth figuring out how to overcome your mother's fear of risk. But you have to feel there is some drive there somewhere, some button that can be pushed, some success that can be achieved, or the project will go nowhere and your mother will feel her fear of risk has been proven right.

I think having your mother dependent on your brother's social security is a very limiting situation. Step 1 should probably be encouraging HER to find her independence. If she can find something to file her own social security claim under, then she might feel less afraid of risking his. If she can work, she will feel less afraid of losing the support as well. Staying in this situation, long run, benefits no one, but I can understand why she clings to it: it is all she has.

My son is only 15 but he has already had his first job, a short one over the summer. He is doing fantastic in school. He still struggles with many basic life skills, but he's young enough to get away with it. You have to understand that we've worked hard with him, invested a lot of time and effort in helping him overcome his weaknesses, and have encouraged him to take a lot of risk. We feel great about his future, but one fact is always there: nothing happens without risk. You get nowhere if you are always afraid of what you might lose.

Thank you all, each of you, SO MUCH for your responses!! !

I notice that there is no mention of what my brother wants.... well I have no idea what he wants, because I have hardly seen him for the past year or so because he is always asleep when I am over there, and when I knock on his door he tells me he's too tired.

He did, however, get out and go to the Renaissance Festival with the whole family one weekend not too long ago. I wasn't with them the entire day since I am a performer there, but he seemed really happy. It's very loud there and there's a LOT going on, and lots of crowds, but he seemed to do really well! Which makes me again think that he just needs a push.

After reading all your responses, I think I am going to get some books and then go over and sit down with my mom and talk to her. She is always telling me to not hold myself back because of family (for example, I didn't go to my first choice out of state university because I want to be near my family), and I really don't see any reason why he should be held back because he's different. He may dress strangely (he loves tie dye), and he may be difficult to get along with at times, but yeah... there's no reason why he can't live a "normal" life.

Thank you all so much!