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Night Elf
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2 minutes ago, Tibbie Dunbar said:

 

Your quote from Katie said "may not be helpful" - which is true. We don't know, but those who have BTDT and seen our kids *succeed* have something in common: We stayed on their side. She also said "could" be disastrous. That's a qualifier. It's a possibility, if the young man is one who will work with all his might and still fail, and then punish himself for failing, or decide not to "be a problem" when he lets his parents down again.

Everyone is telling you the same thing. You don't know what you're talking about, but those who are parents of children on the spectrum are all speaking the same language here.

 

 

Actually, no one is telling me much of anything. With all due respect, it seems pretty clear that you don’t have any more answers than I do. I haven’t seen you or anyone else offer any suggestions that are all that much different from the suggestions I made.

The one thing we all have in common is that we want Beth to be happy and for her son to be successful at whatever he eventually decides to do.

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Just now, Catwoman said:

 

Thank you for posting this link. ? I’m starting to look at the posts now.

There are a couple that are particularly relevant I think - how to launch an adult daughter with Aspergers and my daughter doesn’t want to do anything or something similar.  There is a certain amount of “suck it up” but with more specific advice for how to make it happen.  There’s also a section under the careers section of the blog called Aspergers.

some of what she says is unrealistic and crazy but there is also good stuff mixed in.

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Just now, Ausmumof3 said:

There are a couple that are particularly relevant I think - how to launch an adult daughter with Aspergers and my daughter doesn’t want to do anything or something similar.  There is a certain amount of “suck it up” but with more specific advice for how to make it happen.  There’s also a section under the careers section of the blog called Aspergers.

some of what she says is unrealistic and crazy but there is also good stuff mixed in.

 

Thank you! I’ll look for those first.

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8 minutes ago, Catwoman said:

 

Actually, no one is telling me much of anything. With all due respect, it seems pretty clear that you don’t have any more answers than I do. I haven’t seen you or anyone else offer any suggestions that are all that much different from the suggestions I made.

The one thing we all have in common is that we want Beth to be happy and for her son to be successful at whatever he eventually decides to do.

I told you what can happen to young adults with autism: They make it or they don't. Nobody here has any answers about what exactly will happen to Beth's son, in particular. That's not bothering the rest of us, because we don't think it's our business or that we are entitled to demand answers from Beth.

Here is a link to a site where you can learn more about adults with autism. https://www.autismspeaks.org/family-services/resource-library/adults-autism

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2 minutes ago, Tibbie Dunbar said:

I told you what can happen to young adults with autism: They make it or they don't. Nobody here has any answers about what exactly will happen to Beth's son, in particular. That's not bothering the rest of us, because we don't think it's our business or that we are entitled to demand answers from Beth.

Here is a link to a site where you can learn more about adults with autism. https://www.autismspeaks.org/family-services/resource-library/adults-autism

 

Come now, Tibbie.

I haven’t “demanded” answers from Beth. She started a thread looking for advice. She made it our business to discuss the situation. People posted. People disagreed. Just like we do in every thread. 

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6 hours ago, Ktgrok said:

Back to the OP, would he be willing to do some job shadowing?I set up that for my son today, he's off shadowing a vet tech. No commitment, could be for half a day ,or a full day, or even a few hours if that is all your son could handle in a new situation. But if he could shadow a few people maybe he'd have a better idea of what interests him? Any favors you could call in on that score? I asked my son for permission first, but ended up setting this up for him, via a former coworker. I wish he could have done that for himself, but right now he just can't. But once it was set up he DID get up on time and get dressed (even asked my opinion on which shirt to wear!) and go. It's the planning/executive function part that is the obstacle. 

I've been trying to get him to shadow a dog trainer as well, as I think he might like it, and it is a lucrative field, but again, he has not set anything up despite me sending him the contact info. I'm about to just set it up myself, and to hell with how bad it looks to the trainer. 

With my son, at least, he needs to experience something to know if he likes it. 

I can't imagine who he'd shadow. I actually did think of vet tech for him but then figured he wouldn't like dealing with the sick animals. I should ask him I suppose. Is it a fast paced environment?

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49 minutes ago, Tibbie Dunbar said:

 

I actually do know this, as the parent of children on the autism spectrum. I've been very clearly on the side of working with that reality, in this thread.

My point was that if that's what Cat wants because she thinks that's the answer, the family is doing it. I don't understand why she keeps calling for the parents to tell the kid to get off his lazy butt and make something of his life, when his father does seem to be including a version of that tactic as part of his approach.

Is it that easy? No.

Will it work, without other scaffolding, support, education, and time? Probably not.

But if that's what Catwoman wants, she's already got it. I don't see any reason for her to keep saying it, except that maybe she missed that the young man's father did direct his son to get of the couch and do something, so I pointed it out.

 

Catwoman never said she thinks the DS should get off his lazy butt. 

Beth and her husband used the word "lazy" in describing their son and Cat referenced their words. 

 

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2 minutes ago, Catwoman said:

 

Come now, Tibbie.

I haven’t “demanded” answers from Beth. She started a thread looking for advice. She made it our business to discuss the situation. People posted. People disagreed. Just like we do in every thread. 

IIRC, Tibbie was the one who insisted another poster who started threads about her same issues on an almost cyclical basis was a trolling the board and that no one should reply to her any more.

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We're still waiting on a response from his psychiatrist about getting him a full evaluation. We have to go through her to set it up.

We did tell him he had two weeks to make a decision with the hope that he'll start thinking more seriously about what direction he'd like to take. When we leave him alone, he doesn't think about it much. He says he forgets. So at the end of two weeks, we're going to have another talk and ask if he's had any ideas. At that time I'll suggest he apply to school to get the process started but that it doesn't obligate him to attend. I'll also suggest he reconsider Target and Kroger. He won't work at Walmart and Kohls didn't have a position he thought he'd like. He doesn't want to be a cashier anywhere. He doesn't want to interact with too many customers. Seriously? That leaves stocking overnight again and he doesn't want to work overnight anymore.

I'm feeling hopeless. I hope his psych gets back to us this week.

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44 minutes ago, Ktgrok said:

It’s not that him getting a job or going to school would cause him to be suicidal. It’s that most likely just telling him to do it won’t get him to do it, so if there are consequences for not doing it those consequences may drive him to that. Maybe that part wasn’t clear?

Because in all reality people like feeling successful. They like being good at something. They like supporting themselves. They like being needed in someway. So if you can find a way to finagle it so he gets those things he will want to continue them. I’ve got because you said you had to, but because he finds it meaning in it.

I agree with your second paragraph.

I'm sorry I don't remember who posted earlier about even if someone is disabled to help them help the family (help me...help you. Help me, help you/Jerry Maguire) to the best of their ability, like making soup for dinner.

but at the same time, it is a red flag when people DON'T want to support themselves, be helpfu l, move forward, etc.

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40 minutes ago, Catwoman said:

 

No, that part wasn’t clear. You said that requiring things of him could be “disastrous” after you posted about the potential for suicide. Perhaps I misunderstood your meaning, but that’s the way I interpreted it.

I understand what you’re saying about people wanting to be successful, but if being successful at playing video games is filling that need for him right now, how can Beth convince him that he should want to be successful at something else? And I’m not so sure that all people like supporting themselves. What if this kid is perfectly fine with the idea of being supported by his parents indefinitely?

 

Because a requirement carries with it a consequence. That consequence, or the fear of it, has the potential to be disastrous or even life threatening, depending on what it is and how it is handled. 

And Beth said he was the happiest she'd ever seen him when he was working. That right there says he does want to be successful and work and do well, rather than live off mom and dad. 

7 minutes ago, Night Elf said:

I can't imagine who he'd shadow. I actually did think of vet tech for him but then figured he wouldn't like dealing with the sick animals. I should ask him I suppose. Is it a fast paced environment?

It is in the sense that there is a lot going on, and sometimes you have to rush, but not in the same way that say, stocking is. It is ever changing, so you are not doing the same thing over and over and over again. A bigger concern is, does he have issues with dog drool, poop, pee, hair, etc? You can't be a germaphobe and last long. The entry level position is usually working in the kennel, walking dogs and cleaning cages and such. It really is not fast paced most of the time, although it can get hectic a bit at drop off and pick up times twice a day. 

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2 minutes ago, unsinkable said:

I agree with your second paragraph.

I'm sorry I don't remember who posted earlier about even if someone is disabled to help them help the family (help me...help you. Help me, help you/Jerry Maguire) to the best of their ability, like making soup for dinner.

but at the same time, it is a red flag when people DON'T want to support themselves, be helpfu l, move forward, etc.

Yes. Doing something to be helpful can be so good for mental health. And success breeds success. So making dinner and having people eat it and enjoy it can lead to a sense of satisfaction and optimism that carries over into other things. 

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1 minute ago, Night Elf said:

We're still waiting on a response from his psychiatrist about getting him a full evaluation. We have to go through her to set it up.

We did tell him he had two weeks to make a decision with the hope that he'll start thinking more seriously about what direction he'd like to take. When we leave him alone, he doesn't think about it much. He says he forgets. So at the end of two weeks, we're going to have another talk and ask if he's had any ideas. At that time I'll suggest he apply to school to get the process started but that it doesn't obligate him to attend. I'll also suggest he reconsider Target and Kroger. He won't work at Walmart and Kohls didn't have a position he thought he'd like. He doesn't want to be a cashier anywhere. He doesn't want to interact with too many customers. Seriously? That leaves stocking overnight again and he doesn't want to work overnight anymore.

I'm feeling hopeless. I hope his psych gets back to us this week.

 

Don't feel hopeless, Beth! You’re trying to put the wheels in motion for the evaluation and that’s a big thing, and you are figuring out other options for him, as well. Maybe instead of having him think of ideas on his own, you and your dh can keep having brief conversations about different possibilities that might interest him.

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1 minute ago, Catwoman said:

 

Don't feel hopeless, Beth! You’re trying to put the wheels in motion for the evaluation and that’s a big thing, and you are figuring out other options for him, as well. Maybe instead of having him think of ideas on his own, you and your dh can keep having brief conversations about different possibilities that might interest him.

Yes! And this will sound dumb, but maybe watch some shows together that involve different careers? Like, sit and watch Wildlife Vet on hulu, or dirty jobs, or whatever. 

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4 minutes ago, Night Elf said:

We're still waiting on a response from his psychiatrist about getting him a full evaluation. We have to go through her to set it up.

We did tell him he had two weeks to make a decision with the hope that he'll start thinking more seriously about what direction he'd like to take. When we leave him alone, he doesn't think about it much. He says he forgets. So at the end of two weeks, we're going to have another talk and ask if he's had any ideas. At that time I'll suggest he apply to school to get the process started but that it doesn't obligate him to attend. I'll also suggest he reconsider Target and Kroger. He won't work at Walmart and Kohls didn't have a position he thought he'd like. He doesn't want to be a cashier anywhere. He doesn't want to interact with too many customers. Seriously? That leaves stocking overnight again and he doesn't want to work overnight anymore.

I'm feeling hopeless. I hope his psych gets back to us this week.

 

I dealt with a small variety of slightly similar situations due to foster parent background. None ASD but other issues. 

IME 2 weeks and then we’ll talk again doesn’t work. 

It needs to be more of an every day conversation. Maybe a day could be missed.

But otoh, maybe some days there are several conversations about it. 

And also some hands on doing, not just conversations.  Maybe a lot of  hands on doing  . 

CaseyFoundation May have some good materials and links on launching issues.  

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4 hours ago, Ktgrok said:

Also, mom breaking task down into tiny bits, and asking him to do one, and to do it right then, or at a specific time probably will work better than "look for a job". 

 

I think this is where the solution lies.  You can't say a young adult has the maturity level of a younger teen and then give him the time and space of an adult and assume anything is going to move forward.  Giving him 2 weeks is way too long.  Sitting with for 30-60 minutes a day to strategize and brain storm and talk about next step would probably be better.  I'm just even thinking of my somewhat atypical but haven't pursued a dx 17 year old applying to colleges right now.  If I told him apply to schools and walked away for 2 weeks nothing would happen.  I'm following up with "Have you contacted Mr Jones to write a reference letter?"  "How much have you worked on your essay today?  I'd love to read your notes in the next hour".   Even having sets of required daily chores expected would be really positive.  

I think getting a new eval is a great idea.  Maybe he really is incapable of working and maybe he will qualify for permanent disability.  I think for his future and for his sibling's future, it's good to just keep baby stepping forward.  There are programs for ASD young adults to baby step through adult skills.   Maybe if he has a dx and you can get someone involved, they can help point you toward appropriate services.   Maybe Beth for your anxiety it is time for you to find a way to outsource some of this and sometimes the baby steps can go better coming from somewhere else.  Honestly, I do think he should be fully evaluated for anxiety and depression too.  Especially if he did seem happier when he first started his job.  

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3 minutes ago, Ktgrok said:

Because a requirement carries with it a consequence. That consequence, or the fear of it, has the potential to be disastrous or even life threatening, depending on what it is and how it is handled. 

And Beth said he was the happiest she'd ever seen him when he was working. That right there says he does want to be successful and work and do well, rather than live off mom and dad. 

 

Ok, thanks, Katie. I understand what you’re saying, and I do remember that he was happy when he was working and doing a good job. That’s encouraging. It’s also why I keep thinking he would probably do well if he got another job, even for just a few hours a week so he could feel productive and successful. The key is finding the right job!

I guess I wasn’t thinking of the consequences of failure being all that bad, though, because I know Beth would never say or do anything to try to make her son feel badly about himself. But I think you mean that he might be too preoccupied with his own negative emotions if he fails, so it wouldn’t matter enough that his family was telling him not to be upset. I can understand that now, and why it’s an important consideration. I’m sorry I wasn’t connecting the dots for a while there!

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7 minutes ago, Night Elf said:

We're still waiting on a response from his psychiatrist about getting him a full evaluation. We have to go through her to set it up.

We did tell him he had two weeks to make a decision with the hope that he'll start thinking more seriously about what direction he'd like to take. When we leave him alone, he doesn't think about it much. He says he forgets. So at the end of two weeks, we're going to have another talk and ask if he's had any ideas. At that time I'll suggest he apply to school to get the process started but that it doesn't obligate him to attend. I'll also suggest he reconsider Target and Kroger. He won't work at Walmart and Kohls didn't have a position he thought he'd like. He doesn't want to be a cashier anywhere. He doesn't want to interact with too many customers. Seriously? That leaves stocking overnight again and he doesn't want to work overnight anymore.

I'm feeling hopeless. I hope his psych gets back to us this week.

Based on what you say here, you already know that over the next two weeks it’s unlikely that he’s going to make progress on this task. It probably should be broken down- like make a list of pros and cons of each idea and you/dh talk to him every night about it and inch him towards making a bit of progress on it every day. Have a set time to discuss it so he’s not feeling ambushed. We generally did/do our active scaffolding after dinner. Nobody was hangry, nobody was ready for bed. 

He could also make a list of places he’s willing to work and positions he’d like to have. He might have a list inside his head but writing it down will give you a chance to tease out why he’d be ok working at Kohl’s but not Walmart. 

But giving him a two week period to decide ‘something’ is probably too open ended for him. He needs active help, preferably every day. Routine is your friend when you are making changes. 

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8 minutes ago, Ktgrok said:

Yes! And this will sound dumb, but maybe watch some shows together that involve different careers? Like, sit and watch Wildlife Vet on hulu, or dirty jobs, or whatever. 

 

I wonder if the library might have any video series about different careers that’s geared toward adults or older teens. I remember there was a TV show a while back that showed kids what different careers were like, but if I’m remembering it correctly, it was probably too childish for a young adult. I think it was geared toward high school students, but it seemed pretty hokey to me!

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My son’s in school Careers class has been using the military ASVAB exam, which then has links to lots of career information online to help exploration of possible career and interest areas that show up under what the person has tested as strong in on the exam plus via personality inventories.  My understanding from my friend whose son used Goodwill jobs training program was that it had somewhat similar help. 

I wonder if your Ds could use a career counseling office of a local cc either in current circumstances or maybe by signing up for a class. 

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29 minutes ago, Night Elf said:

We're still waiting on a response from his psychiatrist about getting him a full evaluation. We have to go through her to set it up.

We did tell him he had two weeks to make a decision with the hope that he'll start thinking more seriously about what direction he'd like to take. When we leave him alone, he doesn't think about it much. He says he forgets. So at the end of two weeks, we're going to have another talk and ask if he's had any ideas. At that time I'll suggest he apply to school to get the process started but that it doesn't obligate him to attend. I'll also suggest he reconsider Target and Kroger. He won't work at Walmart and Kohls didn't have a position he thought he'd like. He doesn't want to be a cashier anywhere. He doesn't want to interact with too many customers. Seriously? That leaves stocking overnight again and he doesn't want to work overnight anymore.

I'm feeling hopeless. I hope his psych gets back to us this week.

I've mentioned it before but look into light manufacturing. A girl I know does it and she works on a medical device. She basically assembles a section of the devices, like, for example,* inserts a tube into a slot, twists it and flips over then sends it down the line. 

She has worked a variety of entry level jobs and says she loves this and it is easy.

*she explained it to me but it was months ago so I don't remember but it was simple. 

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41 minutes ago, Catwoman said:

 

Ok, thanks, Katie. I understand what you’re saying, and I do remember that he was happy when he was working and doing a good job. That’s encouraging. It’s also why I keep thinking he would probably do well if he got another job, even for just a few hours a week so he could feel productive and successful. The key is finding the right job!

I guess I wasn’t thinking of the consequences of failure being all that bad, though, because I know Beth would never say or do anything to try to make her son feel badly about himself. But I think you mean that he might be too preoccupied with his own negative emotions if he fails, so it wouldn’t matter enough that his family was telling him not to be upset. I can understand that now, and why it’s an important consideration. I’m sorry I wasn’t connecting the dots for a while there!

Yeah, if you say "A requirement of living here is to work or be in school" what do you do if they don't work or go to school? Kick them out? Back down? Even if she would never ever kick him out, he may internalize that idea. Or lets say she just cuts off his internet gaming...if he hasn't already developed other interests/areas of success that could send him into a pretty bad depression, either from the loss of online friends (the ONLY friends he has) or from the loss of the ability to self medicate if he is doing that, or both. Consequences have to be VERY thought out, very specific, and weighed against the damage they may do to the relationship. 

Better to set him up for success than set up arbitrary requirements. 

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Not to be too radical, but have you ever talked to him about something like Jobcorp?  An atypical slow to launch young adult I know well had an excellent and life changing experience with Jobcorp.  The environment is typically much more structured than a  typical college environment and a lot of soft skills are emphasized along with being engaged in very hands on learning.   And the commitments can be pretty short term.    

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6 hours ago, Catwoman said:

So what should Beth do? If you think I’m wrong about believing her son shouldn’t be sitting on the sofa all day playing video games, yet he also shouldn’t be under any pressure at all to do anything more productive, what do you think should happen? 

I really do respect both your opinions on this (and Katie’s, too,) so I’m wondering what you would do in Beth’s situation. You certainly have a tremendous amount of experience that I lack, and I would really like to know how you would handle it. Beth’s son is still only 22, but what if the years keep passing and he’s still sitting on that sofa? That’s what worries me.

Beth & I have chatted at length over the years via private messaging, exchanging ideas, and I've included ideas on public posts from time to time. I don't often discuss my son on public forums, and so the PM route has been the best avenue for us since we lost our private parent group with the board change. Generally speaking, I recommend scaffolding, which, if you read her posts carefully, you can see that Beth seems to be doing some of that as well. It is a practice that I have employed with varying amounts of success over the years. It keeps a person moving forward, at what has seemed to me, to be a turtles pace, but moving forward they are.

If the years pass and he is not working, we will all be worried. But, just like a person with any other disability, as parents, we do the best we can to get them to independence, and if that isn't possible (which, with ASD, would become apparent over time), we make suitable (we hope) arrangements for their care for when get to a point where we can no longer care for him. I have lost a lot of sleep over this very thing recently. Most of all we love them unconditionally and encourage them to stretch themselves and do the best that they can in every situation, the same as other parents do.

Something I'd like you to think about though, is - would you ask a parent of a child with visible disabilities the same question? "What if Jane is still sitting in that wheelchair twenty years from now, what will happen?" If you wouldn't, carefully think about why you would do so with the parent of a child with an invisible disability. In my personal experience, people, generally speaking, tend to be biased toward acknowledging that people with visible disabilities need assistance, while not recognizing that people with invisible disabilities need assistance as well. Disabilities overall have gained a lot of acceptance in recent years, but there is still a long way to go.

 

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1 minute ago, TechWife said:

Beth & I have chatted at length over the years via private messaging, exchanging ideas, and I've included ideas on public posts from time to time. I don't often discuss my son on public forums, and so the PM route has been the best avenue for us since we lost our private parent group with the board change. Generally speaking, I recommend scaffolding, which, if you read her posts carefully, you can see that Beth seems to be doing some of that as well. It is a practice that I have employed with varying amounts of success over the years. It keeps a person moving forward, at what has seemed to me, to be a turtles pace, but moving forward they are.

If the years pass and he is not working, we will all be worried. But, just like a person with any other disability, as parents, we do the best we can to get them to independence, and if that isn't possible (which, with ASD, would become apparent over time), we make suitable (we hope) arrangements for their care for when get to a point where we can no longer care for him. I have lost a lot of sleep over this very thing recently. Most of all we love them unconditionally and encourage them to stretch themselves and do the best that they can in every situation, the same as other parents do.

Something I'd like you to think about though, is - would you ask a parent of a child with visible disabilities the same question? "What if Jane is still sitting in that wheelchair twenty years from now, what will happen?" If you wouldn't, carefully think about why you would do so with the parent of a child with an invisible disability. In my personal experience, people, generally speaking, tend to be biased toward acknowledging that people with visible disabilities need assistance, while not recognizing that people with invisible disabilities need assistance as well. Disabilities overall have gained a lot of acceptance in recent years, but there is still a long way to go.

 

 

Thank you for such a thoughtful and detailed post. I really appreciate it that you took the time to type it all out to explain things to me. It was very nice of you, and very helpful, too.

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2 hours ago, Catwoman said:

The question I have asked and that hasn’t been answered is... if no one is supposed to pressure him at all to get out of his comfort zone, what is to prevent him from simply continuing along as he is, with no goals or ambitions for the future? 

The nature of ASD is that this young man may never have any goals or ambitions for the future. Finding steady work that he can accomplish in the short term is a reasonable goal. If that no longer works out, then the next thing is planned, building on what was learned in previous experiences. 

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1 hour ago, TechWife said:

Something I'd like you to think about though, is - would you ask a parent of a child with visible disabilities the same question? "What if Jane is still sitting in that wheelchair twenty years from now, what will happen?

 

Is it the same?  The wheelchair is the assistive device which one hopes would help the disabled person in it to do things.

If Jane is sitting in wheelchair doing nothing but playing video games day after day, one might also want evaluations to know  if that is all Jane is capable of doing. If she is capable of more, one might similarly want some sort of skills training and job coaching to help her be able to make progress, despite need for the wheelchair. 

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6 hours ago, Night Elf said:

I can't imagine who he'd shadow. I actually did think of vet tech for him but then figured he wouldn't like dealing with the sick animals. I should ask him I suppose. Is it a fast paced environment?

 

Being a vet tech sometimes is very fast paced.  I worked in general practice and emergency.  Both had slow periods and both had incredibly busy periods.  You need to be good at prioritizing, time management, and multitasking.  You also need to be comfortable talking with the general public, both face to face and on the phone.  It is often the vet tech that is calling owners to give updates on lab work, surgery, hospitalization, and answer client questions regarding their pet's health.  Complicated, case-specific questions go to the vet, but general health care questions are fielded by the techs, as well as taking a history of the pet's problem in the exam room, ("So, Mrs. Smith, Fluffy is here to see Dr. Jones because she may have an ear infection?  What kind of symptoms are you seeing that concern you...").  Sometimes the clients are emotional, and you have to know how to handle that.  There's actually a great deal of interfacing with the public.   

The sick animals are the easiest part of the job, in my opinion.  

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This issue hits me very hard. One of my older brothers very likely has undiagnosed Asperger's. He is in his 60's. Our parents (mostly Mom) supported him going to college for fifteen years, then living on his own, and then moving back in with our parents for over twenty years. He had a few very part time jobs decades ago but mostly did not work. Mom passed away years ago and Dad passed away less than two years ago. They never did anything to really help him aside from financial support and a vague hope that he'd figure out something. Dad had a friend (in the last few years) who was a psychologist and she strongly suspected Asperger's but there was never an evaluation.

When Dad died, there was no fortune left but my brother got a little money to tide him over for a few months. Then he found a small rental place and, wonder of wonders, a real job! Not a high paying job, but over minimum wage. He lives very frugally. He has one close friend and a handful of acquaintances. His close friend is a 90-something neighbor. He visits her almost daily.

He never realized everything that goes into supporting yourself, how much everything costs, etc., until he was past sixty!! I don't know what will happen to him as he ages. If he qualifies for SS, it's not going to be much. I don't think he could live with me because he is extremely messy, undisciplined, unhelpful, etc. He isn't trying to be annoying on purpose. I know that and hope I don't sound mean. I'm grateful he has a job, but wonder about his future. 

OP, I hope your son will get his evaluation and that you will start to get more answers about what kind of help he needs. I'm no expert at all but I wish the best for your son and for you and your family.

 

 

Edited by PrairieSong
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@Night ElfIf your son is interested in jobs that do not require much contact with the general public, he might consider being an overnight stocker at a big box store.  Another job I had that was nights/solo work was in the grocery store bakery.  Very minimal contact with the public or other coworkers.  The job isn't super hard, but you have to keep moving at a quick pace to get everything baked and shelved by the end of the overnight shift. 

Sorry, I just saw that he wasn't interested in overnight jobs anymore.  I will leave it up as an option, in case he changes his mind. 

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Beth, this may have already been mentioned but I haven't read the whole thread so I'll throw it out just in case -- another possibility for your son if he enjoys working with animals but may not be able to handle the pace and people contact of being a vet tech would be a kennel attendant. Those jobs can be found at vet offices that offer boarding to their clients and at facilities not affiliated with vets. There would still be some public contact checking pets in and out, but the majority of the work involves caring for the animals. It's hard and often dirty work for low pay, but it is productive work and probably not particularly fast paced other than peak holiday times.

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I asked ds about working with animals and he said no. I even thought about being trained as a groomer but he wasn't interested.

The reason we gave him two weeks is because he has two applications out there and one of them (Target) we believed would take 1-2 weeks to get through. But the job is taken so that's a moot point. He's the type of guy who needs time to process things. He got very upset during our conversation. VERY upset and said some concerning things. We decided not to push too hard because we don't want him feeling hopeless and like there is no reason to live. We already said two weeks so we're going to follow through with that.

I've asked him to write down the places he'd be interested in working and look into what kinds of jobs they have available. I'm looking at things myself as well. It will be interesting to see what he comes up with. 

At this point, I think school is his best option for long term work. I can't think of any type of job he can get without an education that he'd want to stay at long term. He'll also need to get into a career that has advancement so he can eventually become self-sufficient. He said that is a goal of his but it's very far away and it's hard for him to see it as a real possibility.

We called a disability advocate and she told him that he wouldn't qualify for disability because he has more than $2K in his savings account. I had no idea that would be an issue. 

He wants to learn to drive but I've been working until 6:00 pm every day and am unable to take him out during a slow period. My new manager is supposed to be working on a schedule for next week. I've come up with what I hope is a regular work schedule for me and includes having one weekday where I get off at 2:00 pm which was my shift ending time since June. I miss that. I wish they'd be more proactive in looking for employees. They posted on a city face book page but I think they should put a sign on the outside of our store as well. Maybe the new manager has some ideas.

Ds doesn't want to reapply to my place of work because the job open is hard work. He said he couldn't handle it.

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4 hours ago, PrairieSong said:

This issue hits me very hard. One of my older brothers very likely has undiagnosed Asperger's. He is in his 60's. Our parents (mostly Mom) supported him going to college for fifteen years, then living on his own, and then moving back in with our parents for over twenty years. He had a few very part time jobs decades ago but mostly did not work. Mom passed away years ago and Dad passed away less than two years ago. They never did anything to really help him aside from financial support and a vague hope that he'd figure out something. Dad had a friend (in the last few years) who was a psychologist and she strongly suspected Asperger's but there was never an evaluation.

When Dad died, there was no fortune left but my brother got a little money to tide him over for a few months. Then he found a small rental place and, wonder of wonders, a real job! Not a high paying job, but over minimum wage. He lives very frugally. He has one close friend and a handful of acquaintances. His close friend is a 90-something neighbor. He visits her almost daily.

He never realized everything that goes into supporting yourself, how much everything costs, etc., until he was past sixty!! I don't know what will happen to him as he ages. If he qualifies for SS, it's not going to be much. I don't think he could live with me because he is extremely messy, undisciplined, unhelpful, etc. He isn't trying to be annoying on purpose. I know that and hope I don't sound mean. I'm grateful he has a job, but wonder about his future. 

OP, I hope your son will get his evaluation and that you will start to get more answers about what kind of help he needs. I'm no expert at all but I wish the best for your son and for you and your family.

We have a very similar story in our extended family. For our relative, trying to obtain housing and a job for the first time when he was in his late fifties was an overwhelming ordeal. And, of course, it came as he was coping with his elderly parents' death, not while they were able to help him adjust. 

That situation has informed my determination to get dd employed and independent as soon as possible, even though I'd otherwise be fine having her live with us indefinitely. Easy for me to say now, of course, while she's still a young teen.

37 minutes ago, Pawz4me said:

Beth, this may have already been mentioned but I haven't read the whole thread so I'll throw it out just in case -- another possibility for your son if he enjoys working with animals but may not be able to handle the pace and people contact of being a vet tech would be a kennel attendant. Those jobs can be found at vet offices that offer boarding to their clients and at facilities not affiliated with vets. There would still be some public contact checking pets in and out, but the majority of the work involves caring for the animals. It's hard and often dirty work for low pay, but it is productive work and probably not particularly fast paced other than peak holiday times.

This is the kind of scenario I can envision working for dd, if she can tolerate the sensory environment. And it highlights another aspect of this whole situation which I struggle with: what standard of living are we willing to accept for our disabled society members?

I've lived on a very low income as a young adult. It is enormously stressful. Will there be money to fill the oil tank in the winter? How do you cope when there *isn't*? Oh, now the pipes have frozen! And on and on. But I had an excellent education and a path out of that life.

Now I watch young disabled people of my acquaintance who do not and will not have my ability to get a good job. The aspies who can succeed in something lucrative like computer science are the exception. Most of the kids I know will be lucky to hold down a job like the one Pawz4me describes. That will be considered a success. But the world around them will be full of people who don't understand their invisible disability, and feel that it's their fault if they can't work harder or earn more. They may or may not qualify for SSI, but either way, they're facing a life of stress and financial strain. These kids aren't "joiners" who might find comfort, companionship and help from a church group. They find other people exhausting and hard to fathom, but they still feel lonely. They alienate people because their social understanding is minimal. I worry so much about their future.

 

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3 minutes ago, Innisfree said:

Beth, if his money is all that prevents him from qualifying for disability, can he start spending it down? Though really he might need to get the new evaluation before applying for disability anyway. 

I was wondering that myself about the money. We could take just about all of his money and hold it in our savings but I wonder if they're onto that idea. They may want receipts to show spending or something. I don't know. I'd like to get the full evaulation first and go from there.

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7 minutes ago, Innisfree said:

 

This is the kind of scenario I can envision working for dd, if she can tolerate the sensory environment. And it highlights another aspect of this whole situation which I struggle with: what standard of living are we willing to accept for our disabled society members?

I've lived on a very low income as a young adult. It is enormously stressful. Will there be money to fill the oil tank in the winter? How do you cope when there *isn't*? Oh, now the pipes have frozen! And on and on. But I had an excellent education and a path out of that life.

Now I watch young disabled people of my acquaintance who do not and will not have my ability to get a good job. The aspies who can succeed in something lucrative like computer science are the exception. Most of the kids I know will be lucky to hold down a job like the one Pawz4me describes. That will be considered a success. But the world around them will be full of people who don't understand their invisible disability, and feel that it's their fault if they can't work harder or earn more. They may or may not qualify for SSI, but either way, they're facing a life of stress and financial strain. These kids aren't "joiners" who might find comfort, companionship and help from a church group. They find other people exhausting and hard to fathom, but they still feel lonely. They alienate people because their social understanding is minimal. I worry so much about their future.

 

Yes, our kids being unemployed is a worry for those of us with kids on the spectrum. But under employment is just as much of a worry, and perhaps more of a likelihood. DS19 is brilliant. Documented by testing in the highly/profoundly gifted range. He graduated from an early college high school at 18 with a two year degree and over 70 college credits. At 19 he's well on his way to earning a double major. Book learning is as easy for him as breathing. Will that translate into job success? We have no way of knowing. Thankfully we have enough resources that it's unlikely he'd ever have to scrimp much. But still . . . it's a worry. Combined with the hugely increased rate of depression/suicide for teens and adults on the spectrum . . . ?

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1 minute ago, Night Elf said:

I was wondering that myself about the money. We could take just about all of his money and hold it in our savings but I wonder if they're onto that idea. They may want receipts to show spending or something. I don't know. I'd like to get the full evaulation first and go from there.

Getting the evaluation first sounds wise. If you do let him start spending his money, I'd have him spend it on things that are clearly for his own support, and keep receipts, yes. I would expect to have problems of you just hold it for him, but I'm not a lawyer.

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1 hour ago, Innisfree said:

Beth, if his money is all that prevents him from qualifying for disability, can he start spending it down? Though really he might need to get the new evaluation before applying for disability anyway. 

Since he has held a job and may not have any diagnosis at this point, I don't think that's wise. IF he is considered disabled, he still may not qualify for SSI. They need a full evaluation before they can consider spending down his money, especially while he's in transition with a job. 

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1 hour ago, Night Elf said:

 

The reason we gave him two weeks is because he has two applications out there and one of them (Target) we believed would take 1-2 weeks to get through. But the job is taken so that's a moot point. He's the type of guy who needs time to process things. He got very upset during our conversation. VERY upset and said some concerning things. We decided not to push too hard because we don't want him feeling hopeless and like there is no reason to live. We already said two weeks so we're going to follow through with that.

This really makes me think you should be looking at anxiety and depression or possible othe mental health disorders.  This does not sound like a standard ASD response.  I’d look into a psych and neuro psych evaluation by someone who really got ASD and related disorders.  Especially since he’s had better resilience the past. Depression is more common with ASD but can be more difficult to diagnose and treat properly without the right people involved.   If your brain chemistry is in a negative loop, it can be difficult to get out of it without help.  It’s really not normal to need to be on eggshells all the time.   

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6 hours ago, MissLemon said:

 

Being a vet tech sometimes is very fast paced.  I worked in general practice and emergency.  Both had slow periods and both had incredibly busy periods.  You need to be good at prioritizing, time management, and multitasking.  You also need to be comfortable talking with the general public, both face to face and on the phone.  It is often the vet tech that is calling owners to give updates on lab work, surgery, hospitalization, and answer client questions regarding their pet's health.  Complicated, case-specific questions go to the vet, but general health care questions are fielded by the techs, as well as taking a history of the pet's problem in the exam room, ("So, Mrs. Smith, Fluffy is here to see Dr. Jones because she may have an ear infection?  What kind of symptoms are you seeing that concern you...").  Sometimes the clients are emotional, and you have to know how to handle that.  There's actually a great deal of interfacing with the public.   

The sick animals are the easiest part of the job, in my opinion.  

Yes, I was thinking more vet assistant than full tech for him, or kennel tech. The more behind the scenes stuff, often called a "holder" in some clinics. (as in they hold they animal while the tech draws blood, etc)

3 hours ago, Pawz4me said:

Beth, this may have already been mentioned but I haven't read the whole thread so I'll throw it out just in case -- another possibility for your son if he enjoys working with animals but may not be able to handle the pace and people contact of being a vet tech would be a kennel attendant. Those jobs can be found at vet offices that offer boarding to their clients and at facilities not affiliated with vets. There would still be some public contact checking pets in and out, but the majority of the work involves caring for the animals. It's hard and often dirty work for low pay, but it is productive work and probably not particularly fast paced other than peak holiday times.

Yes. And although kennel tech is low paid (minimum wage, maybe more if he works there a long time and takes on other duties) you can supplement your income with petsitting sometimes, or dog walking. Many clinics will let their employees do pet sitting on the side, and recommend them when clients ask. (others will not). Doggy daycare places are becoming more common too. 

15 minutes ago, FuzzyCatz said:

This really makes me think you should be looking at anxiety and depression or possible othe mental health disorders.  This does not sound like a standard ASD response.  I’d look into a psych and neuro psych evaluation by someone who really got ASD and related disorders.  Especially since he’s had better resilience the past. Depression is more common with ASD but can be more difficult to diagnose and treat properly without the right people involved.   If your brain chemistry is in a negative loop, it can be difficult to get out of it without help.  It’s really not normal to need to be on eggshells all the time.   

It actually sounds VERY typical of people with Aspergers to me, at least the boys I've known. They have a lot of bravado, that they are fine, that they like how things are, but they really don't and when you start putting pressure on them they shut down. And that shut down can go from 0-60 pretty quickly. Of course, they tend to be black/white thinkers already, so that makes sense. You say "I think you need to be productive" and they may here "I'm useless". And yes, when you have innate social differences anxiety and depression are common. 

Which is why I keep saying how vital it is to stay "on their side" and work with them, as a team, not lay down rules and requirements. 

OP, about job shadowing..I really think it might help. He thinks he won't like stuff, but without doing it he can't know. Think of everyone you and your husband know. What jobs do they have? What about people you interact with - like say a hair dresser you use. Can you call them and ask if DS could come in and observe for a few hours? Say that he is exploring career options and wanted to know if he could do some job shadowing, just for a half shift, to see if he likes it. Do that with everyone you can think of, that you interact with. They don't have to be good friends. And explain to DS it is just for a few hours, and he doesn't have to DO anything, just observe. That way he can get a feel for different jobs and environments. There's no application or rejection involved, no worry about what to do if he hates it, etc, so it relieves the anxiety. 

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37 minutes ago, Ktgrok said:

It actually sounds VERY typical of people with Aspergers to me, at least the boys I've known. They have a lot of bravado, that they are fine, that they like how things are, but they really don't and when you start putting pressure on them they shut down. And that shut down can go from 0-60 pretty quickly. Of course, they tend to be black/white thinkers already, so that makes sense. You say "I think you need to be productive" and they may here "I'm useless". And yes, when you have innate social differences anxiety and depression are common. 

Well the OP didn't say what was said, but I do think it depends what was said.  If I said to my own asynchronous almost 18 year old "you need to be productive" and said that repeatedly I could see him responding negatively.  But if I said at breakfast, hey I'd like you to get on website X and Y and find 3-5 jobs you could apply for and we'll talk about that tonight, I wouldn't expect giving him a small task or a short spelled out to do list during the day to cause an outburst or have him saying he didn't want to live which is what Beth insinuated.  Depression/anxiety can be dxed and treated while working on ASD related things too.  I'd just want to be sure to find a psych/therapist who had experience with this combination.   And I get that the OP  is dealing with anxiety which makes it challenging on another level.

OP - can you put your DH in charge of teaching him how to drive?  Especially if you are following up on some of these other angles and you are working until 6 daily.  It might be very empowering for him to learn that. 

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9 hours ago, Pen said:

 

Is it the same?  The wheelchair is the assistive device which one hopes would help the disabled person in it to do things.

If Jane is sitting in wheelchair doing nothing but playing video games day after day, one might also want evaluations to know  if that is all Jane is capable of doing. If she is capable of more, one might similarly want some sort of skills training and job coaching to help her be able to make progress, despite need for the wheelchair. 

Yes, it's the same. . I'm talking about the existence of a disability and it's manifestation - visible or invisible.

Jane isn't playing video games, by the way, that's your idea, not mine. Don't add unnecessary complications to the very basic scenario. It's the basic that matters with bias.

 

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7 minutes ago, FuzzyCatz said:

<snip>

OP - can you put your DH in charge of teaching him how to drive?  Especially if you are following up on some of these other angles and you are working until 6 daily.  It might be very empowering for him to learn that. 

Or professional lessons with a driving school.  It's expensive around here, but has been worth it for our kids, especially the LD kid.  His neuropsych suggested adaptive driving lessons. People usually think of that for people who have had strokes or other health issues and need retraining, but they are also for people with LDs, AD/HD, Asperger's/autism, etc. It was helpful for our kid.

Just might be something to look into; another tool in the box.

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2 minutes ago, TechWife said:

Yes, it's the same. . I'm talking about the existence of a disability and it's manifestation - visible or invisible.

Jane isn't playing video games, by the way, that's your idea, not mine. Don't add unnecessary complications to the very basic scenario. It's the basic that matters with bias.

 

 

I thought Jane was a general name like Jane Doe and that this was a hypothetical. I didn’t realize she was a specific person you were referencing. 

I still disagree with you about at least part of this situation in what would be a hypothetical. Let’s call them Jon Doe and Joan Roe to avoid issue of Jane apparently being someone you know. 

I have to get breakfast made etc — will return to this later  

 

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1 hour ago, FuzzyCatz said:

This really makes me think you should be looking at anxiety and depression or possible othe mental health disorders.  This does not sound like a standard ASD response.  I’d look into a psych and neuro psych evaluation by someone who really got ASD and related disorders.  Especially since he’s had better resilience the past. Depression is more common with ASD but can be more difficult to diagnose and treat properly without the right people involved.   If your brain chemistry is in a negative loop, it can be difficult to get out of it without help.  It’s really not normal to need to be on eggshells all the time.   

It sounds like an ASD response to me - my son responded exactly the same way to many conversations. Stress followed by meltdown of some sort, followed by shutting down the conversation. From the reading I've done, it's a common coping mechanism that has to be worked through and managed. With direction and support, improved coping mechanisms can develop, but not always and not everyone.

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