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colemanse
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16 Sep 2020, 2:03 pm

My son, now 20, has absolutely no motivation for doing anything except playing some video games and watching youtube. He started recently taking a couple classes at a community college, which of course are now done virtually at home, and I have to prompt him for everything. I work at home, so though I'm able to take time out of my day and be his scribe for this classes (he can't write fast enough to take notes) I've begun to fall into a depression and by the afternoon I could just sob every day. I have to prompt, urge, nudge, request, suggest that he do something - connect to the class, do homework, an assignment.... anything. I have to moderate everything and enable everything he does. Then of course he gets mad if I ask him "please, come and let's do your homework for xxxx" too many times. And the semester is just beginning!

Between doing my own work and enabling every bit of his, I'm exhausted and depressed. I don't know how he'll ever be able to do anything for himself - school or job. Socially, is he extremely awkward and most people take a while to understand it's his autism. Right now I don't see this ever getting better.



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16 Sep 2020, 2:20 pm

Has it pretty much always been like that, or does he seem less motivated than he was before? Is he even interested in getting a degree? It is certainly possible college is not the right option, may be better to look into working...he could probably work at a thrift store or something as a start. Maybe see what he thinks about that? Its not worth spending the money or getting a loan for college that will put him in debt if he's not at all motivated to do school.

Also is he diagnosed, and does he get SSI?....if not it may be worth looking into that. I know for me getting the SSI really helped because then I had money of my own which helped with bus fares and things to get the help I needed to get employment also it automatically qualifies you for medicaid. But yeah SSI doesn't mean he can never work, if anything it'll help him get by while doing part time work when he is able.


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16 Sep 2020, 2:27 pm

I feel your pain ... truly do. I have just come through an incredibly stressful period of time and only just coming out the other side now. I have a 21 year old son(AS). I home educated him, when he was unable to cope in private or mainstream schools. He's literally just moved into a University shared residence in London and what a difference!! ! I was teary all the time these past few weeks as his moods were all over the place in the lead up to moving out. I've been coping with abusive behaviour from an ex during this time as well, and had I not bought the necessary essentials for moving into the Uni apartment(there's no bedding or kitchenware etc), then my son would have gone in completely unprepared. I was made to feel that what I was doing was totally unnecessary. So grateful that now it's been all worth the stress, as my son is now aware and grateful. It's felt like "too much crazy" to deal with and I became so withdrawn and wasn't coping with life for a bit there.

In your case, I truly wish that it were possible for your son to experience living elsewhere at this age or to at least be able to have someone else take on the role of assisting with his College work needs. The stress on parents can be over the top and you sound in need of a break from that responsibility. Is there no possibility of hiring external assistance for him(my daughter actually provides this sort of assistance to those on the spectrum, only in England though). We have both worked with children/young adults on the spectrum. Hope you'll be ok. Are there any plans for your son to live either independently or in shared accomodation in the near future?



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16 Sep 2020, 2:30 pm

It's a question of how tough do you want to be.

If everything a person wants or needs is provided for him, there is little incentive to put forth any effort.

If you eat out and bring home take out only for yourself, your son might find some part time work that would earn enough money to buy food.

The Army or National Guard might also offer some opportunities.

You should understand that if someone has had everything provided for them for their entire life, they may not respond well to having reality intrude on their comfortable life. You may have to start with baby steps.



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16 Sep 2020, 2:38 pm

timf wrote:
It's a question of how tough do you want to be.

If everything a person wants or needs is provided for him, there is little incentive to put forth any effort.

If you eat out and bring home take out only for yourself, your son might find some part time work that would earn enough money to buy food.

The Army or National Guard might also offer some opportunities.

You should understand that if someone has had everything provided for them for their entire life, they may not respond well to having reality intrude on their comfortable life. You may have to start with baby steps.


You're suggesting she starve her disabled son until he finds a job to afford food? That's not incentive, that would be abusive.


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colemanse
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17 Sep 2020, 7:03 am

Thanks all for your responses. It actually made me feel better just to express myself. I'm sure I wasn't clear on everything I mentioned. My son does get SSI. He was on course to start job training right before Covid hit, so that has gone on the back burner for now. He needs to work with a job coach, since he doesn't have the social skills to learn the ins and outs of any job on his own. We had also begun to talk about other living arrangements (a group home might work well for him) but again, it's all on hold right now.

My son doesn't have everything done for him. He can cook, washes his own clothes, cleans his room, helps with chores around the house. It's his lack of motivation for taking classes right now that wears me down. Some days are better than others.

Again, thanks for your responses. It's good to hear other viewpoints and to know I'm not alone.



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17 Sep 2020, 7:34 am

Here are my thoughts which are based on my own experiences of my own personal life. (Bear in mind I have not been assessed).

Sometimes I have had periods where I can't take any more information. My body feels lazy. Things feel like they take a lot of effort to do.

The stress that comes through thinking about doing work (Wether it is acedemic based or whatever it may be) will have me doing all I can to avoid thinking about it.
If I can avoid thinking about it, I can cope better in my life. I will look for distraction techniques I can use to bury myself in. (When I used to have a games system, it was a typical distraction technique and I could be in that for months! I gave away my games system as I feared I would end up being in it too much, and I wanted to get some modelling down (Model railways) which I thought is a healthier distraction to be in).
I have to be prepared mentally to get things done. I tend to be an all or nothing type of guy where when I am ready I will go all out in a blitz type filling in forms I have put off for the last minute, or phoning drs etc to get appointments as I had put it off to the point that I had run out of medication etc... Whatever it is, I can be like that. Strangely when I have been in work, I am a people pleaser and I will be on top of things and work my socks off... But then I hit burnout which seriously hits me. I have not worked since the last burnout. I am in a position where I am not back to how I was, and how I was was still a little fragile since the last two burnouts before. (I hit my first one in 2007. Prior to that I was working full time with overtime. The last job where I hit the last burnout was only 4 or 5 hour shifts every other day of the week... Now I can't work. I dare not take the risk as the last burnout hit me soo hard, I had difficulty walking and driving. (Fortunately I can do both... But is scared me as I realized that if I started working again I would likely end up dissabled).

But anyway. (Sorry. Off on tangents). It is likely (Though it may not be) that he is using the games system as a "Time out"... They are also addictive so.. Uhmm. Does he have other hobbies he can enjoy as a distraction and as a "Recharge" from acedemic schoolwork?
I have found when one starts falling behind one needs a break and then after having a recharge, if it is possible to go back to where one left off, it would then bear fruit. The problem is that schools and colleges (My experience incollege was more like collage!) may not be able to do this. But in an ideal world, if it can be done like this so we are learning when we are ready to learn, it will make the world of difference.


I maybe entirely off track in my reply so also bear this in mind as a possibility... But I may be very accurate as well, hence why I mention it.


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17 Sep 2020, 7:59 am

colemanse wrote:
Thanks all for your responses. It actually made me feel better just to express myself. I'm sure I wasn't clear on everything I mentioned. My son does get SSI. He was on course to start job training right before Covid hit, so that has gone on the back burner for now. He needs to work with a job coach, since he doesn't have the social skills to learn the ins and outs of any job on his own. We had also begun to talk about other living arrangements (a group home might work well for him) but again, it's all on hold right now.

My son doesn't have everything done for him. He can cook, washes his own clothes, cleans his room, helps with chores around the house. It's his lack of motivation for taking classes right now that wears me down. Some days are better than others.

Again, thanks for your responses. It's good to hear other viewpoints and to know I'm not alone.


Just a question. Potentially the thought of a future change looming that he does not like the thought of (He may not openly say his feelings as sometimes one may keep them bottled in, and actually sometimes one may not be able to express ones feelings or even be able to mentally capture ones feelings to be able to express oneself... So one goes along with things but one does not like them and fears them).

You mention the possibility of him living in his own place, or in a group home.

When I was a teenager leaving school, I could have done my dream job which was to become a train driver, but it would have involved moving away to England (I live in South Wales (UK)) and the thought of that petrified me.
I went to a local college. During this time the Army, Airforce and Navy (It may have been a kind of combined effort between the three to get the people they needed? I don't remember) thought people like me who were good at using our hands and had a mechanical mind were ideal recruits, but again the thought of leaving home was too much for me.
I have since found out that this is common with people who have prosopragnosia, so the thought of leaving ones parents was more then one could cope with as ones parents being there was familiar. People with prosopragnosia (I did not realize I had it until I was 17 as it is like that. The people who have it often don't know they have it unless others complain to them that they have ignored them etc). Children with the condition are VERY clingy to their parents. They have to be. I had an inbuilt fear of being away from my parents. They were the only familiar thing I had in a confusing world! I would dread the times when I would be seperated just a few feet away from my mother in a crowded shop! If one person walked inbetween me and my Mum I could easily loose her in the confusing mass of other Mums. Somehow remembering what peoples faces looked like was almost impossible, and sometimes was impossible. If I did not take notice of what coat my mother was wearing I was in trouble!

It was not that I would fear being away from home itself because if my parents were there (Especially my Mum) I would be fine, so housemoves were not a problem.


I write this because I wonder if he fears the concept of leaving home, and the school or college work nearing the end is a kind of major change for the future?
Uhmm.

What would he really love to do? Could he prefer to do whatever it is from home?
Maybe if he does fear the concept of leaving home then in an ideal world (Which would likely work for me) is that oe may have a house with an annex or two joined houses...

Sorry. I may be going at a completely different tangent on what I write and may be way off track.


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19 Sep 2020, 4:14 am

I was like that. Find him a basic job and force him to do it otherwise he'll he content with youtube and video games all day for the rest of his life. He will no doubt resist hard against at first. Don't let him get overly entrenched in his lifestyle.

The good thing is that he does pretty much everything by himself so he should eventually be fine with his job or training.



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22 Sep 2020, 12:23 am

My caution is that it may be something deeper than a lack of motivation. Anxiety and depression can both be masked by a need to escape and hide by engaging in diversions like games and social media. When that is the case, pushing or trying to set boundaries makes it worse.

My ASD child, who is an adult and has a computer science degree from university, seems to be experiencing a constant low level anxiety that is, among other things, hindering his search for a career job (he fell into a part time job so he is keeping busy enough). He's always been confident in himself and happy, but right now ... he isn't. Given the uncertainty in the world right now, how quickly life flipped on its head for all of us, it shouldn't be a surprise that someone with ASD is experiencing more stress than they know what to do with. My son will be looking into getting some therapy to help sort it out.

I have no way to know if that is a factor for your son, but it should be considered.

It is also worth considering if he really wants or needs to be in these classes right now. It isn't a big deal in this upside world if your son drops a class or two and progresses through school at a slower pace than he otherwise would have, thereby also reducing how much time you need to spend helping him. My NT daughter dropped her college classes last spring because the anxiety and poorly structured on-line swtich was breaking her. It took so much stress off all of us to not have that struggle anymore. She spent time baking and gardening and found herself excited and ready to start classes again this fall. No regrets on letting her have that break; we aren't in a normal world right now, and old assumptions don't have to apply.

Can your son touch type? If not, you might prioritize typing practice over course work. That will help him transition into being able to take his own notes. My son is disgraphic and had an accommodation at school allowing him to type instead of handwrite whenever necessary. What have you done to try to transition away from having to scribe for your son? I stopped having to scribe for my son when he was in Middle School, after he spent a year with an occupational therapist learning to type his notes and his work.

Finally, do what you need to do to take care of yourself. The situation you are currently in will NOT last forever. Things WILL change. How, when, and to what I cannot tell you. But allow yourself to believe there IS light at the end of the tunnel, even if you cannot see it right now.


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22 Sep 2020, 7:28 am

I have been married to an autistic man most of my life and we have a six year old with ADHD and some other stuff.

Depression in autistic people can look like laziness or it can turn into an addiction with a special interest, such as playing too many video games. The good news is that the special interest gives them emotional and mental relief. Obviously, there are worse ways to deal.

Don’t take notes for him. Get him a recorder and some good text to type software.

Then teach him to put needed information on cards, preferably color coded. Tell him to hard memorize enough to get, say, a B grade. He may be aiming for As, which can stress him out and ultimately lead to doing less.

Give him a written list with pictures of what you need him to do every day. It doesn’t matter how high functioning he may be, it will still help.

Your most difficult item you mentioned was lack of motivation. Some other posters touched on this already. I would say that you need to know from him what HIS goals are, and then you’ll know if he’s on target to reach those goals.

My husband has a genius level IQ. When we were teenagers I was amazed that he didn’t utilize it for school or a fancy job. It turned out that my husband is primarily motivated by being left alone. He will do tremendous work if he knows he will be left alone afterward. So he DOES utilize his IQ for HIS goals, just not for mine.

Lastly, and sorry this is so long, your son is in an age where many autistic people just kind of flounder around. I have heard this over and over for years. A person will get into their early twenties and wonder why they do not have the activity level or drive of NTs in the same age group. Autistic people do commonly “get it together” or find a good life routine by their late twenties. Many do better in overall life success than NTs. So don’t worry.



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23 Oct 2020, 3:12 pm

Sweetleaf wrote:
timf wrote:
It's a question of how tough do you want to be.

If everything a person wants or needs is provided for him, there is little incentive to put forth any effort.

If you eat out and bring home take out only for yourself, your son might find some part time work that would earn enough money to buy food.

The Army or National Guard might also offer some opportunities.

You should understand that if someone has had everything provided for them for their entire life, they may not respond well to having reality intrude on their comfortable life. You may have to start with baby steps.


You're suggesting she starve her disabled son until he finds a job to afford food? That's not incentive, that would be abusive.


I don't think that he/she is meaning that. I don't know how severe he is, or if he is able to hold a job. Now, my parents kicked us out when we turned 18, and we were forced to live on our own (or with our siblings). At 18 (or 20), many don't know what they want to do. I thought that I would be an engineer, and when I realized that I did not want to be an engineer, I lost motivation to do anything. I had to find what I wanted to do, and I was pushed. I had to be pushed to drive, to finish school, but I had to find that motivation. Not wanting to live on 10.00/hr the rest of my life was motivation enough. I have all kinds of plans and dreams (now my health could derail this) at 33, and I couldn't imagine it any other way.

I don't know the story, but there has to be some motivation for him. Otherwise, he won't see the point. Even if it means that he needs to contribute to the groceries, find at least a part-time job (if he is able), and do well in school, or he will need to find another place to live. It's not being abusive; it's motivating him to do more, and it's becoming very difficult on the OP. I didn't like it either, but it was helpful for me to be who I am. I own a house, have an MBA and have a fairly high paying job. For instance, right now, I am in the hospital since Aug 7, and I need to get well so I can keep my high paying job. To do that, there are some things that I need to do; I don't want to, but I will. I have one more surgery to go, then it's recovery, then rehab, so I can return to work, and keep my job (if I lose it, I'm in some trouble - health insurance). Right now, I am able to do some conference calls and Skype meetings, but I'm not well enough to go home.

My cousin who is ASD owns a home and has a decent job (wasn't pushed as hard, but was still motivated). My other cousin still lives at home, but WANTS to get out, so she is working as a greeter at a retail store, and is saving money (wasn't pushed at all, but her parents have issues and her brother is severely autistic and has been living in a home since he was 10).

Don't lose hope; I know it's tough, but make a decision/plan and stick to it.



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23 Oct 2020, 8:34 pm

I hesitated replying on this thread because it hits a bit close to home.
My son is 19, still living at home and hardly does anything for himself, he basically stays in his room all day every day.

It's strange because a few years ago I saw a TV program about the Hikikomori in Japan, these young men who never go out of their rooms and just play video games, and I was really dismissive of the parents. I was like "I would never put up with that behaviour from my kids. I would cut him off from the internet until he saw sense, or just throw him out the house."

Now it's happened to me I'm finding it's a bit more complicated. For one thing, it is not addiction to computer games that is keeping him in his room. Turns out it is a combination of autism and anxiety issues that mean he has no confidence in his abilities to achieve anything in life. He just expects to fail at everything, and is so scared of failing that he won't even try. This on top of executive function issues that makes planning and scheduling difficult, is really hindering him.

So I guess my suggestion would be to see if you are able to get mental health support for your son. Maybe something like occupational therapy, too. Because our kids have to learn to rely on themeselves - or failing that, to learn how to get professional help, rather than rely on us to do everything for them.



colemanse
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13 Nov 2020, 2:24 pm

I haven't been here in a while and was just reading through everyone's responses to my initial post. Thank you all for taking the time to do that. I think at this point we'll get through this semester at college (he's only taking two classes) and decide what might be best for next semester. It's unfortunate that the programs he needed (job coaching was the biggie) are all on hold right now due to covid. I know with time that situation will improve. Until it does, I'll talk to him about a plan to get us both through the six months or so.

He has started talking to a counselor once a week - maybe it helps, it's not evident to me that it does, but it gives him someone to talk to. He has great difficulty in making friends. Others his age tend to ignore him since he's so quirky. I've looked for online Zoom meetings or clubs for adults on the spectrum, but haven't found any. If anyone knows of any, let me know!

Someone mentioned young adults with ASD floundering in their early twenties...that is him. If asked what he wants to study or do for a living.... he doesn't know. That's why we thought taking a few classes might help him focus on something, but no luck so far. I don't know if I can handle many more classes, since I have to continually (and I mean every day) cajole him to study and then he gets angry with me. I need a break.



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13 Nov 2020, 3:20 pm

colemanse wrote:
I haven't been here in a while and was just reading through everyone's responses to my initial post. Thank you all for taking the time to do that. I think at this point we'll get through this semester at college (he's only taking two classes) and decide what might be best for next semester. It's unfortunate that the programs he needed (job coaching was the biggie) are all on hold right now due to covid. I know with time that situation will improve. Until it does, I'll talk to him about a plan to get us both through the six months or so.

He has started talking to a counselor once a week - maybe it helps, it's not evident to me that it does, but it gives him someone to talk to. He has great difficulty in making friends. Others his age tend to ignore him since he's so quirky. I've looked for online Zoom meetings or clubs for adults on the spectrum, but haven't found any. If anyone knows of any, let me know!

Someone mentioned young adults with ASD floundering in their early twenties...that is him. If asked what he wants to study or do for a living.... he doesn't know. That's why we thought taking a few classes might help him focus on something, but no luck so far. I don't know if I can handle many more classes, since I have to continually (and I mean every day) cajole him to study and then he gets angry with me. I need a break.


Well sounds like the best thing to do for now would be put the classes on hold. If he is doing his own chores and all that the classes probably aren't necessary and may be less stress for both of you if he is not taking classes.

Once this covid stuff mellows out than he could still do the job coaching...or alternatively if there are any thrift store chains in your area he may not need a job coach to get a job at one. Realistically even now he could maybe get a job at a place like that at least in my state thrift stores are still open.


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16 Nov 2020, 7:10 pm

I recommend a book I recently read, _Failure to Launch_. It's about young adults that have trouble transitioning to independence, and I found it really helpful for understanding my current (fairly terrible) relationship with my kid. (Now 19, similar boat.) It wasn't specifically written about autistic kids and of course doesn't take COVID into account, which is a *huge* game changer. But it's still very illuminating.


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