Three steps forward, 20 steps back

[Innisfree]

Just now, Storygirl said:

@Innisfree what about something like medical transcriptionist for your daughter?

Maybe! That's something I hadn't thought about. It fits a lot of her needs. She'd have to improve her spelling. 😉

We have some time to consider things, but I do think and worry a bit. I appreciate the idea!

[Storygirl]

About guardianship. This came up in a discussion with our county services case manager. She said that once DS16 turns 18 -- which will happen in the spring of his junior year of high school -- if he says he doesn't want county services any more, they will discontinue them, even if everyone thinks he would still benefit. I haven't heard this from the state disability case manager, but it might be the same. He will also be able to say that he doesn't want to take medication, and his nurse practitioner then would not prescribe it any more.

So she advised us to look into the guardianship process, which can take awhile. We haven't yet, but it's on our list.

Dawn, the vocational rehab may only want to talk to your son. I don't know -- perhaps he can sign a form that says you can be part of the process, or something. But be prepared for the idea that if your son tells them he doesn't want their help, they won't sign him up against his will. You probably will need to get him to agree to it, though you can do the initial research and phone calls, etc.

[8filltheheart]

2 hours ago, Storygirl said:

About guardianship. This came up in a discussion with our county services case manager. She said that once DS16 turns 18 -- which will happen in the spring of his junior year of high school -- if he says he doesn't want county services any more, they will discontinue them, even if everyone thinks he would still benefit. I haven't heard this from the state disability case manager, but it might be the same. He will also be able to say that he doesn't want to take medication, and his nurse practitioner then would not prescribe it any more.

So she advised us to look into the guardianship process, which can take awhile. We haven't yet, but it's on our list.

Dawn, the vocational rehab may only want to talk to your son. I don't know -- perhaps he can sign a form that says you can be part of the process, or something. But be prepared for the idea that if your son tells them he doesn't want their help, they won't sign him up against his will. You probably will need to get him to agree to it, though you can do the initial research and phone calls, etc.

This was actually never an issue for us.  I have always made the phone calls, set up the appts, driven him there, sat in on the meetings, been part of the plan, etc.  I think they are probably use to it.  I know for our ds that if it were left up to him to call and make an appt, an appt would never be made.  He won't talk to people on the phone.  

I agree they won't get him to something he doesnt want to do, but equally they are trained and definitely know how to interact with people on the spectrum and make them feel really good about themselves and what they are capable of doing.  They are affirming that they can be very successful and that they want to help them be.

[PeterPan]

2 hours ago, Storygirl said:

once DS16 turns 18

Oh my, I had not really thought through this. 

[Storygirl]

52 minutes ago, PeterPan said:

Oh my, I had not really thought through this. 

It has come up for us, because DS16 has a habit of refusing help, accommodations, etc., that are available to him. So we've talked with case managers about what happens when he is 18.

[Lecka]

I have heard from military spouses that guardianship varies a lot by state. 

[PeterPan]

I had thought about guardianship in terms of financial. It had not occurred to me on the medical part, sigh. And that for us isn't completely obvious yet, but it's going to be an issue. 

[happycc]

Having lost a son with ASD at around 23 yrs old (he would be 26yrs now), I have learned the hard way that these kiddos are not ready to be adults at 18 year old. You can continue to homeschool them until 22 or 23 yrs or so. They just don't have the executive functions to manage all the expectations of adulthood even they so badly want to be part of society but their anxiety and depression gets the best of them. The biggest issue for my son was how naive he was. He wanted to be popular and liked but listened to the wrong people. The people who loved him told him the truth but it wasn't anything he wanted to hear.  He couldn't hold a job for long or finish one single college class. He couldn't manage his finances and his relationships were a mess. When he passed he had $30,000 debt. What he needed was someone to come along side him and help him each week with budgeting and all of the paperwork. He wasn't going to listen to his dad or I though. We tried but he was like "I am an adult and I know what I am doing."

Also look up Pathological Demand Avoidance. I am learning new ways to phrase things with my younger ones with ASD that addresses their severe anxiety. Right now I am thinking of the SCERTS model. I did become an Behavior therapist after all these years of experience and work pt for 10 hours a week remotely. But there are some things that just doesn't sit right for me. 

So with these young adult ASD kiddos. Keep them home and treat the time as elongated adolescence as much as you can. It's hard as legally they are adults and you would naturally expect them to be adult like. They are not ready and need the extra time to grow and develop in a safe and respectful environment that doesn't trigger them. For many of them it is a rude awakening that they are different than their NT peers. Just a different time line. 

Don't think he would do better in a group living environment. We thought that with my son living in his youth pastor's home with other men. That was a mistake for him. It didn't work. 

[kiwik]

On 9/9/2020 at 12:56 PM, kbutton said:

Wow, you all have some great information!

I felt that way as NT person leaving for college. Thankfully it was better by the end of college. I can imagine it taking more time with the asynchronous development of ASD.

Does he tend to initially respond with a strong NO, but then come around? We have that dynamic here, and not always just with the ASD kiddo. It's tough to navigate, but if it's a thing with him, your counselor might have some suggestions. 

Is this a problem or a pet peeve--as in, does this keep him from doing the job, or does it just drive you up.the.wall? I assume it would be a big negative on a job site, so it's a behavior worth trying to eliminate. I am wondering if there is a sort of ABA-ish way to help extinguish this behavior. I know it wouldn't be explicitly ABA like with a young child, but I bet something could apply in principle and be effective. 

Is there anyway around that flat out no without considering it followed by a slow change? It makes the kid's life so hard.

[kiwik]

On 9/10/2020 at 3:08 AM, Pawz4me said:

The idea of under-employment has always been a bit of a mystery to me. I mean -- who decides what is or isn't under-employment? Is it strictly IQ? That seems very weird, given how wonderfully complex and varied people are. I know/have known quite a lot of people who would, I suppose, probably fit the definition of under-employed, but they've all seemed mostly content and happy with the lives they're leading. So how is that automatically a bad thing? Back in the day I was a legal assistant/paralegal. Quite a few of the attorneys urged me to go to law school. But the idea of that much more school wasn't appealing to me at all, nor was having to worry about getting in XXX number of billable hours a week to be on the partner track, having to bring in business for a firm, etc. I didn't want that stress. So I guess I would have fit the definition of under-employed? Whatever.

I am under employed.  I have a good degree but realized that what I need from a job is different than I thought.  So I have found a job that meets my needs.  The pay is not awful, I don't have to play workplace politics and I am not micromanaged. I have the energy (physical and emotional) to have a life outside work.

[kbutton]

7 hours ago, kiwik said:

Is there anyway around that flat out no without considering it followed by a slow change? It makes the kid's life so hard.

I think we have to provide information indirectly and in little bits. My son is really self-aware, so that helps. We can be a lot more direct now than in the past; when he was younger, we had to watch for signs of receptiveness. I am not sure how to describe it in a practical way, but we would wait for him to switch into a frame of mind where he could be receptive to information. Sometimes the lack of receptiveness was not stubbornness but was more of a mental block that moved when it moved. 

[KSera]

This thread has been SO helpful to me, I'm so glad it got bumped up. At the time it was originally, posted, I didn't know I had any kids on the spectrum and didn't see it, but now I have two young adults with ASD (one hasn't been diagnosed yet, but with the other diagnosed, this one is super clear).

On 9/8/2020 at 10:52 PM, PeterPan said:

Isn't that the question everyone with a parent with a disability thinks about? 

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  MGW's profiles suggest whether the dc is likely to live independently, independently with assistance, or what the outcome is likelyl to be. By about age 8 the profile is pretty fixed, so it's not like it's an unknown thing. The social worker, behaviorist, etc. can already *predict* what the family should be working toward.

It's been a long time since I looked at those profiles. The idea that it's pretty fixed by age 8 has not rung true here, as my severely impaired adult child appeared typically developing and we had no clue would be an impaired adult when they were age 8. Not even the neuropsychs who evaluated her a couple years later flagged any of that--they expected her to be highly successful.

On 9/10/2020 at 2:31 PM, Storygirl said:

 At this point, I predict DS living with us well into adulthood. Though he will need to work on being more pleasant to live with. I do dream of having a house with a built-in apartment, so that he can live with us but not WITH us all of the time.

Has your ds made any progress on the bolded? I have one with ASD who is pleasant and easy to live with (this is also the one who is employed and manages adult life fine) and one who is exceedingly difficult to live with and is also the one who doesn't adult hardly at all and we need to figure out a living situation for. Living at home would be totally fine with us IF she was willing to work at being a good housemate.

On 10/18/2020 at 9:19 PM, happycc said:

Also look up Pathological Demand Avoidance. I am learning new ways to phrase things with my younger ones with ASD that addresses their severe anxiety.

 

Don't think he would do better in a group living environment. We thought that with my son living in his youth pastor's home with other men. That was a mistake for him. It didn't work. 

PDA fits my kid's profile very much. It's very hard to know how to work with though, particularly for a young adult who would prefer not to do a thing.

I'm very very sorry to hear about your older son. Was that a therapeutic housing situation for young adults with ASD or just a casual group living situation? I have thought an ASD community housing model might work for my dd, but I have no idea how to afford it.

[Storygirl]

I just saw your question, @KSera. At the time that I was writing, DS was 16, and now he's 18 and going into his senior year in high school.

DS is easier to live with now, because of his medications. But when his meds are not in his system, he gets very argumentative. He has also had mental health challenges over the last year that have been difficult for all of us to go through.

When we are having a bad day, I can't imagine living with him for an extended period of time, because I want to be able to exist in my own house without constant stress and arguing. At the same time, he is nowhere near ready to be out on his own.

DS works a part time job, but he had to switch jobs recently for unfortunate reasons that create concern for his prospects for maintaining long-term employment that would be able to meet his financial needs. He is refusing to consider a post-12th grade job training program and won't go to college (his LDs place him at a middle school academic level).

So we have serious concerns.

We have recently done special needs estate planning, which I mention, because it also came up earlier in this thread. We are not DS's guardians, but we have medical, financial, and educational POA and have set up an ABLE account and a special-needs trust. Our attorney wants us to do what he calls a Roadmap (which we have to work on, still), which will outline a plan for where we want DS to be in the future. I'll try to remember to post again after we have done this, because I haven't looked at the documents yet. The roadmap is not a legal document, but a copy will be filed with our will and trust, so that a trustee would be able to know our desires for DS, should we not be around to help him ourselves. The roadmap can be modified as time goes on and circumstances change.

It's really, really hard for me to envision how DS will transition to an adult who lives on his own. We all want that, but he is not willing to take the first steps toward any goals that will get him there.

This year, we are focused on getting him graduated. At least he will have a diploma. For awhile, he was talking about wanting to drop out, which alarmed us. DS does not understand that if he doesn't have a diploma, his prospects will be even less. It's kind of an abstract concept to him, I think. He gets a lot of intervention support at school, and his classes would all be considered easy for high school, but I have to help him study for tests. He is resistant, and I have to require it, in order to get him to pass certain of his classes. It's not fun. I am much more involved in his education than with any of my other teens.

Anyway, back to your question, working with a psychiatric nurse practitioner has really helped us optimize his medication for his ADHD and moods. I don't like that he takes multiple medications, but they have a positive affect. One of our concerns was that he would tell his medical practitioners that he was refusing medications, now that he is 18, because he would be impossible to live with. But he hasn't. We're also concerned that he will refuse his IEP accommodations, which he needs during this last year of school. But having the POA documents gives us some additional comfort that we still have a say in these matters.

Our attorney calls our situation Supported Decision Making. It's not guardianship.

Edited August 17, 2022 by Storygirl

[PeterPan]

On 8/6/2022 at 4:51 AM, kiwik said:

So I have found a job that meets my needs. 

I'm missing the flow of the thread here, but yes, yes, yes!!! This is something we think about with ds a LOT. I have a meeting soon with his county transition coordinator who will set up work opportunities, and that's one of the things she's going to be discussing I assume is how to balance what might be nice in theory with what makes a good life for him in reality. He needs low stress, reduced work hours, etc. 

I was thinking for myself that if I decided to work later I should consider working as a travel agent for (pick my then preferred cruise line), hehe. I had thought about grad school, but since covid my brain is just a mess. I don't need tons of money but I will need some stimulation and pleasure. So if it was my pleasure and it got me discounts and some spending money, that's fine, right? I 

On 8/6/2022 at 4:32 PM, KSera said:

It's been a long time since I looked at those profiles. The idea that it's pretty fixed by age 8 has not rung true here, as my severely impaired adult child appeared typically developing and we had no clue would be an impaired adult when they were age 8. Not even the neuropsychs who evaluated her a couple years later flagged any of that--they expected her to be highly successful.

Since I haven't had a polite word about neuropsychs in the 8 years since one took our money and gave us the most CRAP WORTHLESS PILE OF INCOMPLETE DIAGNOSIS EVER, I'm not sure how much stock I'd put in anything one said, especially about a female who later turns out to be on the spectrum. The ONLY tool a neuropsych typically has, besides their own intuition/observation (which is flawed by their lack of experience and skewed experiences in the demographics they see) is paper questionares like the GARs. Our neuropsych even had the audacity to use an OLD one, outdated. No ADI-R, none of the extra tools they can use to differentiate ASD and other mental health diagnoses (like depression, bipolar, etc.). ASD is a question that really benefits from its own eval from someone who sees a lot of it, and it gets missed when we expect psychs to be so jack of all trades, doing everything. They can't, they don't, and stuff gets missed.

So also, I'm not sure your adult dc's situation, but having an adult dc myself I can say that what impairs them is much more complicated sometimes than *only* the social thinking which is the only thing that profile was looking at. It wasn't looking at sensory, auditory processing, anxiety, MTHFR status, and all sorts of other things that RADICALLY AFFECT how a human functions. So they're looking at a much narrower prism. If someone is regressing, actually regressing, I would be concerned about what got missed medically to cause that regression.

Psychs will say that same pie in the sky "expect good things" about my ds too. He'll probably never live completely alone, certainly won't marry, will need supports to hold a job, will need supports for problem solving and life issues, etc. But they say that mess too. It's just the nice statement of your kid is high IQ, your kid is amazing. And he really is and what he accomplishes is. He went to the eye doctor today and they are always blown away at his behavior, how well he does. And in the same sentence I'm posting that he destroys property, needs significant supports, etc. 

So on a good day, yes they say this nice stuff. They can get away with saying ANYTHING because they're overpaid and unaccountable, in a profession that doesn't give refunds when they're WRONG.

[PeterPan]

15 minutes ago, Storygirl said:

Supported Decision Making. It's not guardianship.

I'm glad you got this set up and it's working out well!! It's pretty much where I think we'll have to go with ds as well. As you say, he'll be living under our roof past 18 which means we really have to have those documents. Currently we use supplements based on genetics, no meds, but I'd use those docs and get him in a hospital and onto meds hot fast if he ever became noncompliant. Completely untenable to have him living here without SOMETHING that works. Unacceptable, would not have it. Seen too much of real life to bend on that one. 

 

15 minutes ago, Storygirl said:

how DS will transition to an adult who lives on his own.

Ok, I'm going to throw this out and I think it was a story my mother told me of someone she is friends with in another state. So this is totally 2nd hand, but it was my mom giving me the mom talk of get your brain straight, get your soul prepared for tough love. My mother said that this person with a dc somewhat like ds (able to work but also going to need some support to live independently) picked a place (I forget what kind of place, probably a paid setting, something congregate) and after her ds graduated moved him in there and said this is it, this is where you live, bye. 

And I was like oh my. And my mom says no, the follow up is that it gave the boy PEACE. He has a predictable living situation, whether it's super compelling to him or not, doesn't have to worry about what happens as the parents age (which apparently was an issue because they were on the older end), and it gives him friends, a way to go to work, and just basically gave him a life. She figured moving at 21 or 30, either way he was going to have to move.

But it was very tough love, sigh. And I'm not saying I know where that place is. But the parent picked it and didn't have a kumbayah like sit around and wait for him to sort it out. She picked it, moved him there, and said this is how it is. 

I have no clue how they finance that btw. 

Me, I dicker, because I had always assumed we would move him into a house near us. That would give him some space/independence and have extended family to help as we go out of the picture. I almost think he could manage an apartment building and live in one of the units. But a congregate setting would not be a wrong answer. Lately I've been thinking I might set him up as an apartment in our basement, but that would be conditional on it being my PLEASURE, as in he's a joy to have in the house, AND conditional on complete mental health compliance/stability. If it's not my pleasure (as in he's not a joy to have in the house), then I'm pretty much going to tell them dh to get him a place and move him out, tough love. By the time he is 21, I will have done enough. I cannot change that some people really need to live in a congregate setting or with assistance to have their best lives. My dad has lived in a congregate setting for some time now, and reality is the military was congregate too. Some people just function well with clear expectations and structures. 

I don't know, that's going to be hard. I'm saying I don't think you have to be a martyr to be a good mom. 

Edited August 18, 2022 by PeterPan

[Storygirl]

Yeah, our attorney said that he will be suggesting that we remove some supports, probably before we are completely ready, at some point.

First, because without as much support from us, it will become more evident what support he needs from elsewhere (county, state, social security, whatever) that he is not yet receiving. And that it's important for him to be as independent as possible, for all sorts of reasons.

And secondly (though there are a lot more points to make), it's a terrible blow when an adult who has always lived at home and been supported by parents loses not only their parents (when they die) but their home and all of their supports. We don't want that.

In my dream world, DS18 will one day live in an apartment with DS17 as an intermediary step as a young adult. But DS17 is on a different path and will go to college, etc., so it may not happen.

I don't see DS living independently at 21. I think we're hoping for by age 25 at the earliest. And I expect he will still need some kinds of help from us at that point.

The good news -- he's starting to learn to drive and has just qualified for adaptive driving lessons. I wasn't sure he would ever drive, and now I have some hope that he may be able to get himself from home to work one day, without having to live on a bus route or rely on a driver.

Edited August 18, 2022 by Storygirl

[KSera]

 

55 minutes ago, Storygirl said:

We have recently done special needs estate planning, which I mention, because it also came up earlier in this thread. We are not DS's guardians, but we have medical, financial, and educational POA and have set up an ABLE account and a special-needs trust. Our attorney wants us to do what he calls a Roadmap (which we have to work on, still), which will outline a plan for where we want DS to be in the future. I'll try to remember to post again after we have done this, because I haven't looked at the documents yet. The roadmap is not a legal document, but a copy will be filed with our will and trust, so that a trustee would be able to know our desires for DS, should we not be around to help him ourselves. The roadmap can be modified as time goes on and circumstances change.

 

Thanks for mentioning all this. The estate planning piece is on my list and something we have to figure out. I've read about ABLE accounts, and that may be a direction we end up needing to go if she doesn't start moving in a more functional direction. Do I recall we have until age 26 to set one up?

And speaking of accounts, how on earth do people pay for these congregate living scenarios? I have found some, but it doesn't even seem doable to finance a regular apartment for dd for...forever?, much less one that comes with living supports.

[PeterPan]

16 hours ago, Storygirl said:

And secondly (though there are a lot more points to make), it's a terrible blow when an adult who has always lived at home and been supported by parents loses not only their parents (when they die) but their home and all of their supports. We don't want that.

Yes, I think this was her logic on why she did it. Sounds like this lawyer has been exceptionally helpful to you for planning!!! We're not quite there, but over the next couple years we'll need to be doing this too. I had wondered if it needed to be a SN attorney or if any attorney who could do the docs would do. But really, he's bringing a lot more knowledge and experience to the table. 

[PeterPan]

15 hours ago, KSera said:

And speaking of accounts, how on earth do people pay for these congregate living scenarios?

I'm sure the answer is not pretty. We've been approached by someone who wanted to start a community and was looking for investors. The problem is not only the basic cost but the cost of a person overseeing it. There are communities being formed and I think sometimes they attempt to be self-sustaining by having participants work within the community. So they might raise things, sell them, have a cafeteria, etc. and all that work money contributes to the viability of the community. If there's no income, yeah you're talking $$$$$. 

I don't know what options that state provides. Seems like something to talk about with your county disabilities office, as they're going to be your contact person.

[Storygirl]

https://www.ablenrc.org/what-is-able/what-are-able-acounts/

@KSeraFor an Able account, the disability has to be documented before age 26. But that is the only age restriction, as far as I am aware. Someone who is older than that could open an account, as long as the disability was diagnosed and documented before age 26.

[Storygirl]

I don't know anything about congregant living situations, because we don't forsee that being necessary for our son. Though he will likely need various kinds of support, for DS, we anticipate that it will mostly be financial and things like counseling, and what county and state disability services can offer him. I agree with PeterPan that people at each county board of developmental disabilities should know how congregant living works.

[Lecka]

It depends what state you live in what their funding is and at what level of disability they provide funding.  
 

And then there can be differences between states.

 

My son qualified for OPWDD when we lived on New York and they provide different amounts of money.  If you do self-directed you can choose your own service providers.  In our county if you lived in the main congregate care place they took all your funding and you did their system.  
 

I would say to a great extent, people qualify for congregate care and get the funding, and then can choose how to use the funding.  Or that is one model.

 

Then there’s SSI.  
 

But many people are qualifying for SSI or some kind of funding.

 

Then these private congregate care models are often people who wanted an alternative to the default options and can use their funding to get together, buy a house, hire someone, and then the funding of the people living there is paying the mortgage and the staff salary.  
 

For my son the level of supervision was a big thing they looked at.  At the time we said my son did not need arms-reach but did need “within sight.”  
 

They look at if someone could respond to an emergency.  Like — could they leave if there’s a fire alarm.  Are they going to use the kitchen safely.  
 

Right now we think my son will do supported independent living.  That doesn’t mean we literally think it’s what he will do.  Right now it seems like it fits him though.  This means we think he will be able to independently and safely follow daily routines, but will need help with some tasks and a check-in, probably on a weekly level.  
 

To a great extent he fits in a neat box where he does the best he can and is emotionally stable.  
 

I don’t know a lot about how this works, but I believe there are people with mental illness who qualify for SSI and can work a little and share an apartment this way.  
 

A therapist may know about this.  
 

My cousin is involved with a Clubhouse.  That is something with mental health here.  Different places have different things.  
 

My cousin’s therapist is the one who brought up SSI for him.  Mental health caseworkers can help with housing vouchers and things like that, too.  There can be various benefits people may qualify for.

 

Here it is not going to be the same as for someone who would qualify for a dd waiver.  
 

I think even if it is autism — it doesn’t mean it will qualify with things labeled “autism,” in general.  It can qualify with mental health instead.  I think that is reality with the changes in the scope of the autism diagnosis.  I think in practice there are things that were called “autism” back before “autism spectrum disorder” when people now labeled “autism” would NOT have been labeled autism, because maybe it would have been pdd-nos or Aspergers.

 

My son was diagnosed right around that time and was originally diagnosed with autistic disorder.  
 

Many people diagnosed with “ASD” now would not have been diagnosed with autistic disorder.  Off the top of my head, ASD includes autistic disorder, pdd-nos, and Aspergers.

 

For younger-kid things, to a great extent, everything that says autism is for everyone who has autism now.

 

For older-kid and adult things, things that say autism are more likely to mean “the same group we were talking about when this waiver program began when the terminology was more limited.”  
 

That’s a generalization but it is what I see a lot.

 

 

 

[Lecka]

A lot of the famous “we used our funding to create a group home for our son and his 3 friends” set-ups are with Down Syndrome.  That happens to be where I have seen stuff about just how it is paid for.  It can be called “self-direction.”  

[KSera]

The one autism specific supervised apartment living set up I'm aware of around here starts at $3000 per month 😳. That just seems unreachable for the vast majority of people to me. And the waitlists for low income housing are many years long. I did somewhere see a site meant for people to find matches with other people looking for group living and to find caregivers so that families can put together their own scenario, which I expect costs less, but I can't remember what the website was. And I really don't know how you pay someone's salary to supervise unless you're wealthy. Perhaps in some situations their payment is just free rent? For my own kid, that might work, as she doesn't need supervision, she just needs help with a couple things.

[Lecka]

Here the mental health place my cousin does, has (now I don’t know all the details) emergency housing vouchers, so it’s not necessarily that you’re in the same pool with everybody else for housing vouchers. They also maintain some apartments through their thing, that can be rented by people waiting on a voucher.  
 

It’s not that there is enough for everybody, but there are things like that.  

[Lecka]

I have an opinion also, that especially with adults, if adults means anyone over age 21 or 25, think how many of them were getting diagnosed with “something” before autism was a common diagnosis?

A lot of people got diagnosed with mental health issues or ID.  
 

I do also believe that there is a real increase in numbers, I used to not but now I do think so.

 

But at the same time, there were definitely people who would be diagnosed with autism now who were diagnosed with ID or mental health issues.

 

So for people where it’s not ID, then it’s ———- mental health.

 

I hope this makes sense.  
 

 

[Lecka]

The other thing with housing vouchers, is — I looked at a form recently through a volunteer thing I’m doing.

It lets you check a block if various things apply, that are things that can give you priority.

One of the things you can put is receiving SSI.  Off the top of my head.  
 

Definitely not everyone who qualifies on income gets a housing voucher here, but the priority categories I think have a lot better numbers. 
 

Another thing is that it’s very local and sometimes you could cross a boundary line and live somewhere that the list is a lot shorter.  That’s my understanding at least.  I think our town has its own “housing authority.”  The name is Town Housing Authority.  But I mean — I think our town could have a better situation than another town for various reasons.  Because we aren’t a place where there are famously few spaces and very, very deserving people don’t get them.

 

Here not everyone who qualifies by income can get a voucher, but a lot of people are getting vouchers.  

[Lecka]

What I mean is — I do think a disability or mental health issue (which could be the same thing) are priority things for housing vouchers in a lot of places where it’s not a complete shambles.  
 

At least that’s how it is here and I think it’s not just here.  
 

[Lecka]

So, my cousin’s is referral based, which means a therapist knows about what programs and options there are, and has an opinion about what referral is most appropriate.

Maybe you can ask a therapist, what direction they would think if your daughter keeps going down a path of x, y, z.

A lot of times people don’t want to make predictions like that, but maybe somebody would, lol.  

[Lecka]

I’m not sure but I think my cousin was able to do VR and then other stuff wasn’t mentioned (or my aunt and uncle didn’t know) for a few years, but in that time my cousin declined.

 

My aunt and uncle had no idea he could qualify for more stuff because before he hadn’t qualified for it I guess.

 

I don’t know.  They often seem to be in denial but it’s also like — well, they go by what people tell them.  

[KSera]

11 minutes ago, Lecka said:

One of the things you can put is receiving SSI.

I'm putting this one off for my own dd because by far our first choice is for her to be able to work and support herself. The rules seems to make it really difficult to work part time and get SSI to supplement because the income limits are so very low. I think that's where an ABLE account might come in in the future. She could work and the money could go in there to pay her housing expenses, and then SSI could supplement. But again, I don't want her to depend on SSI if she can be self supporting (though it's super hard to see that happening at this time).

[Lecka]

I absolutely think that is a wise choice.  
 

Just to let you know, I am 44 years old and my cousin is 45.  A lot has gone on in the past 20 years.

 

And, I can think back and there are a lot of people from when he was younger who are in a different (employed, stable) place than he is now.  
 

He is doing well for “himself” — I think he is functioning at the top of what he is capable of.  (This is a wording I hear, for kids who have responded well to therapy and are truly doing well, but it’s a relative thing in it’s way.) 

 

But I think to a great extent, people whose kid (or relative) went through a rough patch in young adulthood (transition to adulthood) have moved on in life and just aren’t discussing it on online forums.

 

If my cousin was employed and stable now, I don’t think that whatever was going on in his early 20s would occur to me now.

 

I am like that 😉. And I think a lot of people are.  

[Lecka]

Also my cousin, when he was in his early 20s, and he is an age where the whole “Aspergers is a diagnosis” always fit him but caught him in his very late teens or early 20s, anyway — all of a sudden in his early 20s he was diagnosed with Aspergers, ADHD, and anxiety.  Now he is diagnosed with Bipolar 2.  Nothing about Aspergers has dissipated, but it’s like the thing that matters is Bipolar 2.  I can’t really explain that, if it’s an artifact from how society has organized things and decided he fits into mental health and not autism, or if it’s a “real” thing.

 

When he was younger (but mid-20s) it was like — okay, he perseverances,  that is really obvious, but does that mean he’s anxious or that he has Aspergers?  Or does it just mean he perseverances?

 

He perseverances a lot and to me I would say medication has an impact but it’s maybe not a huge impact.

 

I don’t know.

 

I love him, though, that is where I am at right now.  And my husband gets along well with him.  They both have an interest in vintage/retro video gaming.  It goes a long way.  

[Lecka]

I think he might have been 35 before he was diagnosed with Bipolar 2.  And I would say he did decline, but I think that’s not uncommon, with mental health, as sad as it is.  It’s hard for me to know, though.  

[Mimi50]

My son Joshua has ADD my husband and I went through several years. With no job and lack of motivation. Is there any interests that he does have?? Some kind of hobby that might help him feel better about himself. 

[ieta_cassiopeia]

DawnM, what you describe sounds a lot like burnout. I might not have much to offer in terms of concrete answers, but as an autistic person I can reassure you that you are a good parent, who has raised a good son, and both of you are in a very difficult situation. Your son is lucky to live with someone who cares so much about him as you do.

Burnout is something that happens often to autistic adults and it doesn't get talked about much. It's especially rough because everything difficult starts looking like the difficult thing that failed - even if, in more logical moments, the nature of those activities look very different, and even if some/most of the time they look desirable.

Getting assistance from wherever you can find it is a good move. I find it heartening that your son is willing to do some things, even if the list of other things he needs to do to get into work is long. Opportunism is your friend; take strength from the moments he wants to do things that will help him find work. You may find it goes better if you set the requests at something short of getting a job in the first instance, be that by breaking it down into small chunks, or focusing on getting the first step right for a number of "practise" applications before doing the genuine one. But you'll need to be guided by what he's ready to do.
 

On 9/9/2020 at 4:08 PM, Pawz4me said:

The idea of under-employment has always been a bit of a mystery to me. I mean -- who decides what is or isn't under-employment? Is it strictly IQ? That seems very weird, given how wonderfully complex and varied people are. I know/have known quite a lot of people who would, I suppose, probably fit the definition of under-employed, but they've all seemed mostly content and happy with the lives they're leading. So how is that automatically a bad thing? Back in the day I was a legal assistant/paralegal. Quite a few of the attorneys urged me to go to law school. But the idea of that much more school wasn't appealing to me at all, nor was having to worry about getting in XXX number of billable hours a week to be on the partner track, having to bring in business for a firm, etc. I didn't want that stress. So I guess I would have fit the definition of under-employed? Whatever.

Under-employment has quite a few different definitions. The one I tend to use is working in a job below what one believes oneself to be capable of doing. It's less broad than the measures most commonly used by people who measure the concept, because by definition that sort of statistician can't ask a whole bunch of people why they're doing the sort of work they're doing and still get a measurement that could be used at scale.

Even on the measure I use, it's pretty common that I find that employed autistic people consider themselves to be underemployed, for a variety of reasons. Some are more familiar to neurotypical people than others:

- They like what they are doing and see no reason to change
- They earn enough for their needs and are not motivated by money (the things that actually motivate them may be work-related or not, but more money is the classic incentive offered to people to work more hours or in tougher jobs)
- Preferring to put discretionary energy into something else, perhaps a passion project, friends or family
- They are in a role that protects them from some weak point of which the autistic person is well aware (whether it's socialising with unfamiliar people, having to deal with company psuedo-politics or simply transport issues)
- There's a medical obstacle in this company to getting promoted/doing more hours, but they don't want to leave
- The idea of going through the recruitment mill again is horrific (especially given the amount of discrimination that happens in an environment where there are many ways of dressing that up to avoid anti-discrimination laws)
- Bad previous experiences of the workplace (autistic people average more of these than the people I've spoken to about this who don't specialise in disability employment expect)
- The rubric of the "tougher job" isn't clear enough for the autistic person to feel confident in succeeding at it (even if in reality, the role would be a walk in the park for them).
- Confidence in general
- Employer inflexibility (the more pay, the more likely an employer is to believe it should determine both what work is done and how it is done - a combination that becomes riskier for autistic people the greater the degree to which it is done, if it's a job that doesn't already impose the "what" and the "how")
- Less flexibility to have a "bad day" (in a world where it's easy to lose a job on the strength of a bad 15 minutes). For people whose disabilities are affected by people and environment around them, one has to plan long-term things like employment on one's worst day in the role, not one's average - and autism is one such disability.
- The "tougher" jobs that could be done require doing something the person considers unpalatable or unethical. I know someone who considers ordering someone to change the type of language they use to take a different role to be an ethical affront (context: that person doesn't object to standard business norms of language, but the use of specific jargon and formalised speech associated with tougher roles in the organisation).
- Lots of organisations make getting tougher roles dependent on impressing certain people, often to a greater degree than they actually need to be impressed by someone once they hold the position (because such roles are competitive in hiring, whether the competition mechanics are revealed or not). Many autistic people have the people skills to do the tougher job but lack the people skills to convince people they could do the tougher job - or have offended one specific person who happens to be the key to that tougher job but isn't especially relevant to them otherwise (more than once, said autistic person has been completely oblivious to this state of affairs).
- Repeated difficulty in connecting the requirements to get the tougher role, or even more hours, together. For example, it can be hard to apply for more hours if one keeps getting writer's block at the point where one wants to write the application...
- They could work a tougher job and would be happy to do so, but they need to do certain things to prove it that aren't directly relevant to autism. Different organisations are more or less transparent about how promotion/gaining extra hours works, prefer different hoops and lend different amounts of support to people who express an interest.

A lot of words to agree with @Pawz4me , I appreciate...