Parents of 27 yr old Asperger (ASD or PDD-NOS)

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I don't know things like tough love and such usually make me less motivated because it makes me feel more like a piece of crap and I assume I am not the only one who is effected by it that way. I will agree an attitude problem is certainly not the same thing as disabling depression and anxiety, but the impression I got was that it's the latter in which case that is a very bad approach......could be wrong in my assessment though.

Also though in my opinion knowledge of having a disability can help one stop beating themselves up for shortcomings they can't move past no matter how hard they try and work with what they have, but too much slack wouldn't be good either.

Also a lot of times someone has a disability and people don't really cut them any slack, they still get treated like they just aren't trying hard enough. So I think I might disagree with Temple Grandin on that one. I was expected to act normally and no one really 'coddled' me anymore than they would most children and if anything I grew up just thinking I was worthless and sucked because I could never keep up, or do things as well it never occurred to me that maybe there was a reason. But yeah I did not exactly turn out well due to the whole trying to function normally and keep up with everyone else regardless of my limitations.

I agree with all this, and I want to further stress I think the professionals are wrong here, and am curious of their certifications......since when is tough love a legitimate treatment for mental health issues? Perhaps it would be a good idea to get a second opinion from different professionals if at all possible.

Tawaki and others,
Thanks for your posts. Your husband is my son!! Very poignant and precise. I've read through all the posts so far and I see a thread of similarities on several fronts:
1) Forcing him out is not a good idea
2) Seek help from SSI (tried and failed...have to appeal) If anyone has suggestions or can refer a pro on this, please post.
3) Take it slow with change...small steps
4) Executive Functioning Skills points - He definitely has challenges related to these

Some additional info to share:
He has absolutely no trust or faith in any professional (MD/Psychologist.Psychiatrist,Counselor etc) thus far. His justification for this is "They do not understand me, they have no idea what I am facing". So far I agree. We are in the Greater Houston area and we have not found a Therapist that focuses on Adult PDD-NOS/ASD. The ones we have seen have no success rating or case study history to share. Confidentiality BS I guess.
We applied to SS and got turned down. Looking to appeal as we have more Medical evidence now.
Recently tested for ADHD/TOVA Test of Variable of Attention (Normal), CARS2-HF Childhood Autism Rating -High Functioning (High end of Mild to Moderate) SRS2 Social Responsiveness Scale (Moderate w deficiencies in reciprocal social behavior)
All test results were clinical rating except ADHD/TOVA
He has been employed before...for 2 years. He found the job independently w/zero help from anyone. He has a resume, he has attended a program with job search/interviewing/applying/application completion with Life Coach staff directing the program. He wanted no part of that program.
We have spent tens of thousands of $$$, literally, all with no success...we're at square one...hence the reason I am on this forum.

What job did he have for 2 years? What job do you realistically see him being able to do? What are his interests? Is there an at-home business that you could start for him?

What happened with his job? Did he like it, was he miserable, was it too hard/easy for him? I'm wondering if he hit a wall and got burnt out, or if something happened that deeply affected his confidence or optimism surrounding work.



That's understandable...bad experiences with professionals can be deeply scarring.

Are there any groups of adults with ASD that meet up in your area and would your son be interested in ckecking out such a group (if one exists)? Not necessarily a "support" group even, just a bunch of people who might have better idea what he's facing.

I would suggest making sure to appeal the SSI decision, so long as its not too late....I am working on that myself. It might vary some depending on where you live but you can probably fill out a form to request an appeal on the site and send it in, then you have to give them any new medical evidence not entirely sure how exactly and the SSI department is suppose to help with getting a representitive or you could hire one.

I don't know it might be best to call the office or go there and ask about how to go about all that, that is what I plan to do, its a very confusing complicated process at least in my opinion. But with SSI you have to keep up on it due to the regulations of it or whatever. If its too late to appeal the decision you can apply again but obviously that will take even longer...so in that case I would look into any state assistance though not so sure how useful that is to disabled adults living at home as sometimes they go by household income and not the individuals income.

I can understand not trusting professionals, I don't much of the time either but at the same time I recognize I need some sort of help with the issues I have. What is his perspective on SSI, is he unwilling to go with that idea or does he think it would be a good idea or just not care?

Has your life gotten better since you were diagnosed with Asperger's? In my case, it's hard to say -- but in some ways, it has probably gotten worse, certainly not a ton better. I don't see how having a label affects whether or not you beat yourself up. It just makes you think you are incapable of more things than you might actually be.

Before, I was just eccentric and considered some of my qualities assets -- now, I just think of them as part of a disability. So I don't think being labeled with a disability is necessarily a good thing. At least it took until 25 to get the label, but if it had happened in my early development, I'd probably be hopeless.

So this is where tough love comes in. When someone is forced to do something, she may find that he is capable of more than she assumed. So, I don't see a problem with the OP helping his/her son get on SSI and then booting him out. At least he'll be able to survive if he has SSI.

I agree that there may have been something that changed regarding his outlook on employment. Even if he was happy in that job, he may feel hopeless without it. It may have taken every fiber of his being to apply for it and he finds it really depressing to go through that process. Anytime I have had to look for work, I found it really hard. Everything you do, whether is written form like apps and resumes or Internet versions or verbal interviews, requires tapping into theory of mind skills that are not intrinsically there. Trying to look at it all from the perspective employer's perspective (especially in on the fly in interviews) is taxing beyond belief. That plus the executive function issues of managing the search is really exhausting. Plus it is really depressing (for NTs too), to be unemployed for a long time.

The fact that he has managed to do it before, is a really good sign, though. I would still try to offer some hand holding if you think he could manage the other phases of it, like the interview, without you. If you don't think he can, I would let him take a break while you help he sort things out, if for no other reason than to leave possible places of employment available for when he is ready. Some places will blackball you for future jobs if you tank an interview. I do not know how plentiful jobs are where you are, but it is something to take into consideration. No point in poisoning the well, if you know he cannot manage, right now.

I am still waiting on getting officially diagnosed, and its not the having a label that has that effect its the explanation that label provides I suppose. I don't feel the knowledge of having AS makes me think I am incapable of more things than I might actually be...the things I feel incapable of due to the AS are things I've proved myself incapable of not new things I've decided I can't do cause I have AS. I think in my case the AS is the least of my worries its the PTSD and Depression that really get in the way of my functioning and of course the AS doesn't help with getting by socially, so I don't have social skills to make up for my dysfunctionality. My life has not gotten better since being diagnosed with the other things or pursuing an AS diagnoses.....when I was diagnosed with depression/anxiety at 15 I thought things got better for a while then it all got worse but that has nothing to do with the diagnoses or lack thereof.

The way I see it I am disabled in a lot of ways, but I still think I have qualities that are assets and not really part of the AS or anything else. Though I sort of wonder if I'd still have the same assets if I didn't have AS and had good mental health but it's hard to say...I certainly don't see all my traits and such as part of the disorder though....I do however find it hard to define myself.

Also if someone is forced to do something they can and don't want to then they can do it, Perhaps someone needs a little pushing but also needs a lot of support to go along with it in order to build up enough confidence to do it on their own. However if one is forced to do things they can't do its only going to lead to feelings of failure when they can't do it no matter how hard people push.

My reason for thinking helping him get on SSI and booting him out is a bad idea would be....he'd be on the streets and in the condition the OP describes he would not survive. Its likely someone would steal any money he ended up with from SSI and I doubt he'd be too keen with finding proper shelters and help.....the world isn't nessisarily full of kind generous people especially if you are homeless and can hardly function well enough to watch out for being used, manipulation or mistreatment of some kind.

Perhaps getting the SSI and coming up with a reasonable plan for him moving out, though SSI is typically not enough to get your own place and afford other expenses, but there could be housing options for low income people or options like that.

Have you ever heard of learned helplessness?

I think the distinction beween can't and won't is often blurred. There were lots of things I thought I couldn't do, which I actually did once I was forced to do them. For me, being able to rely on others has a tendency to make me helpless. When I lived at home at age 17, I literally couldn't do anything. Seriously. No independent living skills whatsoever. I literally couldn't do laundry, cook meals, organize anything, or even buy anything at a store due to social anxiety. I can't make myself learn these things through my own choices. When my parents told me to do simple things, like pick up an item at the store, or learn to drive, or even put something on a shelf, I typically freaked out and couldn't do them. Even the simplest request by someone else makes me stress out and become incompetent. More responsible parents would have concluded that I was completely incapable of living on my own.

Only when I ran away to college to escape a bad home situation and had to get a jerb and pay my own bills did I actually start to learn independent living skills. Had I grown up in an upper middle class white home, my parents probably would have spent $1000's on "independent living skills" and "job skills" and "social skills" classes that wouldn't have helped much. As long as I had someone to take care of me, I couldn't do anything. It's because things are harder for me than they are for other people, so whenever I'm able to rely on other people, it literally becomes impossible for me to do anything for myself. Once the other people are taken away, my mind adapts like magic.

Especially if this kid was mild enough to be invisible throughout most of school, I bet his sensory issues aren't that severe and his actual capability might be quite high. He just needs a kick in the pants to get started.

Here's what I would recommend: get him on SSI, help him sign up for low-income housing, and then boot him out as soon as you're satisfied that he will have a roof over his head and a meager income. He can and will figure the rest out on his own.

Strategy and planning.

Take away the one thing that he will never let go of. Find out what is the one thing that he's attached to. Make sure he stays bored if you decide to keep him longer. Boredom will create change. I was in the same situation and my dad took my laptop and told me to look for a job a few years ago. I did it out of boredom because I had 0 dollars, no laptop, no tv, and no car. My dad cut off all ties to that and said I would have to buy everything again once I find a job. I hated him for that but now I don't because it was the best thing he did for me. I work two jobs and am returning to school in the summer. Make him so bored that change will happen.

When you get to the meltdown/anger stage, you've hit the point of it being too much, and I'd be very wary of pushing further than this (and one should back way off for the sake of not inflicting excess cruelty on someone).

Sadly, people with AS look normal, so people will expect normal from them. Very few end up doing normal things [on their own] because they don't have the capability of doing such.

I am quite familier with learned helplessness, and last I checked it didn't come from being able to rely on adults as a child....it comes from being in a negative situation you cannot change, so you get used to just putting up with it. Learned helplessness is more something that causes one to get walked all over or it can effect things like confidence and self esteem. But it comes from mistreatment and a bad environment not a child being taken care of by their parents.

Learned helplessness can interfere with functioning, and ones ability to improve their situation and pushing harder usually just brings further frusteration.

I can see the point that being able to rely on others for everything might make it difficult when you get out on your own and being forced to due to being on your own can help with developing more general life skills. But that is not the same as learned helplessness or psychological symptoms preventing proper functioning...that is more about getting used to relying on people and taking advantage of it because you can, not actually losing the ability to do things.

Also I was fairly 'invisible' in school though some teachers thought I had some sort of disorder, and I have pretty bad sensory issues all that is changed is the way I react to them and I have more understanding of it so I can take steps to minimize sensory overload. Also I'd agree all the guy needs is a kick in the pants if the OP hadn't included the bit about him having already gone to college and dropping out and being stuck in life ever since. The trouble is he might not be able to figure the rest out on his own, well unless of course he's more functional than me and understands the system better which is certainly possibly but I got the impression they where simular functioning or lower functioning...though there are other resources to help him figure it out besides parents if he got SSI and low income housing.

I just wanted to point out that this topic comes up on this board fairly often, and there is a section where many threads are collected on the "parenting index" stickied on the top of the board.

I think that some of what you are describing seems like a good idea - one doesn't want to make life too comfortable for someone who needs motivation to be independent. However, I've read numerous tales here of homeless adults with AS who have been thrown out by their parents. Not everyone who's tossed in deep water learns to swim.

I think arranging your world into privileges and expectations is a good call - as parents of a 12 year old, it works for us. While he's an adult, he doesn't have the privileges of an adult if he's buying them with your money and I think that is a reasonable expectation.

However, if there is a skill gap that is preventing him from acting like an adult, you aren't going to get very far with this system: it is a stop-gap measure at best. Take a look here http://www.livesinthebalance.org/ (yes, the website is designed for children, but I think some of the principles are sound, particularly this: http://www.livesinthebalance.org/ ) Many parents here who have had successful experiences with their children use this approach (in our case, we use a hybrid of this approach and of behavior-consequence-reward, but we do make sure to work on skills, too.)

Jobs are tough right now. If he has a diagnosis, can you hook him up with a disability advocate who can help him with a jobsearch? He probably needs significantly more support than most people both in getting a job and keeping one.

I think learned helplessness comes from both.

I was definitely not "invisible" as a kid and turned out fine. It sounds like this 27-year-old is very high-functioning but just suffers from depression and lethargy at the moment. For parents who are this involved, it seems odd they would have missed his diagnosis until early adulthood if he wasn't very mild.

OP, in my state, where we have an extreme Republican government that hates people with disabilities, we still have a good vocational rehab program that helps people with ASD. I'm sure you can't do worse in whatever state/nation you live in. Check it out. Just do a Google search for vocational rehabilitation centers in your state/country. They can find him a counselor, send him to occupational therapy, and help him get a jerb.