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

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We are parents of a 27 year old male (Stephen) diagnosed with Aspergers. The onset, or at least the manifestation, of noticeable problems began in his first year of college at age 18. Before then he was in a controlled environment, same school, same friends, same house, same surroundings...you get the picture. He was considered quiet, and/or shy, very easy going among friends, family and school officials. Nothing seemed unusual enough to alarm us of issues looming. However, time away in independent life at college, things changed rapidly. He became withdrawn, depressed and very distant. His grades suffered to the point of failure. He spurned close long-time friends. He made no new friends. He had no involvement or interaction socially. He would not communicate with us. It was the beginning of a downward spiral that continues today.
Some of the symptoms and behaviors we deal with daily:
Little/No Social interaction
Defiant
Anger/Emotional Outbursts
Lack of social/emotional reciprocity
Preoccupation with certain subjects
Unemployed with zero interest in working or job searching

We have seen Psychologists, Psychiatrists, Counselors, MD's and other professionals. We've tried medications, many with horrible adverse effects. To date, we had little success with our attempts. We are at wits end, physically and mentally exhausted. We continue to search for support, professional help, successful methods of coping with ASD.
As parents that care, and no solution in our sights, we're hoping to ask everyone we can for referrals, direction or known solutions to help us launch this young man into a life worth living. Please share anything that has worked for others faced with this tremendous fog disorder.
Remember this is an adult not a child which makes the challenge even greater.
Suggestions?

Last edited by Shineb on 21 Apr 2013, 9:12 am, edited 1 time in total.

He seems like he needs a little prodding. They have temp agencies that can find him part-time work. That's just to start. Since he already has free room & board he probably wouldn't bite anyway. That's when tough love comes in. When I was 24 I was given two choices - go to nursing school or be homeless. I hated nursing (and still do, actually) but I thought that was better than living under a bridge. It only takes a second to douse someone with gasoline and fling a lighted match at them. You couldn't encourage him to join or attend meetup groups because he'd refuse. The only thing left is tough love.

Hi

I am a 22 year old guy with Aspergers, and have been through this myself. Just created a blog post on specifically what you are asking about: http://www.aspergerexperts.com/lifeprop ... -lifepath/

If you like that, me & my partner have created an entire course building around that material. It's free, and you can get it using the form on the right of that page.

What redrobin says is partly true, however you need to be careful to not shove him out the door without giving him the right skills first. You'd be amazed what happens once he is put in a situation where he needs to change, but this will only really get good results once he has the skills he needs. And in order for him to get the skills, he needs to be motivated. Again, I describe it all in the blog post

Tough love is where we are now. One of his friends or should say his one friend recently got booted out and is homeless. So he is seeing and hearing the difficulties of being deprived of comforts first hand.
We've given him a very simple outline for him to follow Daily:
> Get up and get out of the house
>Look for a job at least 5 applications per day
> Keep his room clean
> Do chores w/o complain
Lack of compliance results in privileges taken away:
Week 1 - Smart phone taken away - replaced with simple cheap flip phone
Week 2 - Car taken away for week (Since he can apply on line)
Week 3 - Gas Card taken - 1 tank of gas/week only
Week 3 - Cable TV
Week 4 - Out the door
We've also cut off all money. He gets $0 from us. He loves junk food...chicken fingers, burgers fries and Dr Peppers. All gone!

So far no compliance as far as job search or little that we can see --- OMG the reaction to the smart phone being taken was UGLY but he got over it. Week 2- He barely missed the car. Week 3 is starting and he'll have wheels but I have my doubts anything will change.
Homelessness is creeping up on him and he could care less.
He plays the guilt card on us "If you put me out I'll just die on the streets" etc... It is going to be very hard to do but I am bound by promise to do it.

Are there going to be 5 different job to apply for every day that he can realistically do? And are you sure that it's lack of interest that is the problem with the job searching? Maybe he's not sure of how to go about it.



Have you made sure he doesn't have executive functioning problems that would make this task problematic?



Does he know how?

----

Your posts are really giving off the impression that you have the idea that Asperger's is an attitude problem rather than a disability.

Who am I,
Thanks for your response.
We have been extremely patient and understanding. We certainly realize this is much deeper than simply a bad attitude. We are trying this "tough love" approach at the insistence of "professionals". Two reasons we chose this: 1.) there is little information available to guide us as responsible parents... no owners manual for this condition 2.) We feel obligated to try/do something perpetually to help.

Your questions are good questions. We are only hoping to stimulate any activity instead of him being holed all day in his room.

Honestly we do not know if this is the right approach and maybe it is not. I have my doubts. That is why I am out here searching and looking for advice, suggestions and successes from the community. All I want is for my son to be happy and lead some semblance of a normal life period.

So far Danny Raede's information and suggestions make good sense. Please give us your suggestions.

He probably will die on the streets from the sound of it though hopefully for his sake someone will notice and take him to a hospital before that happens. It sounds like he is dysfunctional due to his mental condition. Also going to college only to experience being used, isolation, rejection and being away from your comfort zone can do a bit of damage, did a lot of damage to me to....because I went to a new place only to experiance a bunch of pain and isolation and I still haven't recovered. I think it would make more sense to encourage SSI if he can't work which it seems like is possible....rather than just assume he can and wont. Also you say 27, well even if he's not functioning well he is an adult........so not sure how he can be 'defiant' perhaps frusterated, stressed, too depressed to do things or have much motivation which may be unpleasant to be around but its probably much more unpleasant to him.

Tough love usually does not work well when dealing with someone who's struggling to function due to mental problems, that will just add a lot more stress and usually too much stress worsens symptoms causing even more dysfunctionality.

Sorry if I seem rude or blunt, but I have strong feelings about this sort of thing due to my own situation, I am just greatful as hard as my mom can be to get along with and as narcissistic as she can behave at least she's not throwing me to the streets and is helping some with me getting support outside of her. I am now appealing for SSI and she's helping with that and getting me to appointments to get all the needed medical records.

But your bound by promise, and we all know homelessness really helps people get themselves out of ruts.........when your homeless you can't keep up with hygene so your not presentable for jobs, the stress and lack of enough food or shelter and all that worsens mental problems so all you're doing is sentencing him to a life of homelessness and hospitalizations. Unless I am missing something....like if he is perfectly functional except when it comes to being asked to do things....if that was the case Id say boot him for sure but it sounds like its more of a case of lack of ability than not trying hard enough.

I guess my point is maybe you should consider if this is a promise you should remained bound by or not, or if maybe you should try and support him in other avenues of help........like encourage him to apply for SSI, or maybe state help as that would financially assist him and cover medical costs. But that's just my opinion. I mean the not caring could be he just doesn't care about life anymore because he knows from here on out its just going to get worse, that is usually why I stop caring about things because I am too depressed to or its just too much.

If he hasn't been doing any of these things up 'til now, there's a chance that expecting him to do an about face and display this much change in his behavior all at once is going to overwhelm him and he'll become paralyzed...if his problems are stemming from anxiety, depression, confidence issues/shame and/or executive functioning problems then there's a very good chance.

Maybe you could try giving him one or two goals at a time, and offering him the opportunity to choose the goal(s) himself (you could give him a list). If he doesn't want to choose, start with the smaller stuff -- like contributing the household by keeping his room clean and doing chores.



If your son has difficulty with planning, then setting a timeline like this and telling him to just go out and make things happen probably won't work. It might scare him...but being scared is not necessarily the same thing as being motivated and won't help him to organize or plan things nor confer upon him any abilities he might be missing, and if he does have legitimate difficulties getting in the way of his meeting your expectations, then it will just make things worse.

Your son may need more help than non-autistic adults do in terms of remembering things, organizing things/activities, and generally keeping his life together. He may need activities broken down for him, may need help with creating schedules. He may take longer to learn certain things...He may just generally need more support with things than most other people do. Also, it may take him a lot longer to do things than it would take a non-autistic person. (When I was working, it took me a minimum of 3 hours to get ready in the mornings, and I was always rushing -- going as fast as I could.) I'm not saying you should see your son as incapable of doing anything nor that you should see him as incapable of living an independent life, but it's important to adjust your expectations according to his abilities rather than just basing your expectations on whatever most typical people are capable of doing.

Take looking for a job...Does he have a resume? If he doesn't have a resume, does he know how to write one? Does he know his strengths and weaknesses as they relate to employment -- does he know what kind of jobs he might be good at and what skills to highlight in an application? Does he know how to write a cover letter? Does he know how to look for a job--where to look and what to ask? Can he figure out which skills are needed for which type of job? Has he ever been through a job interview and how does he do with them -- does he know how to dress, what kinds of things to say, what kinds of questions he might need to answer? Is he capable of keeping all the steps in mind and doing them in order without any sort of external assistance/guidance (human, literature, lists, organizers, etc.), or is he the kind of person who, without assistance/guidance, forgets pieces and is likely to send in half an application or gets so lost and overwhelmed in all the steps/details of the process that he can't even start because he doesn't know where to begin? There are a lot of pieces to looking for a job...applying for just one job can be monumentally complex and difficult for someone who has communication difficulties and/or executive functioning deficits (and if you add emotional/mental health problems to the picture, the stress of it all can make it completely impossible). There are programs out there that provide people with help finding employment, writing resumes and cover letters, learning interview skills, and job coaching...might be something to look into and offer/suggest to him.



This seems like a good idea to me -- especially if financially supporting him is causing a lot of strain/tensions problems. Try to keep an open mind about the idea that his not looking for work may be an issue of "can't" rather than "won't".



You could suggest a bunch of activities--volunteering, athletics, and continuing education classes are all options for getting him out of his room.... If your main goal is to get him out of the house, let him decide what he does when he's out -- just tell him he has to be out of the house for a certain amount of time each day.

Help him get on SSI -- then boot him out. At least he'll be able to survive in that case while he figures s**t out.

I was never booted out of the house, but I was pretty helpless and incompetent when I first became an adult, and I left mostly due to a bad home situation. So I was motivated. My executive function is still a piece of crap, but I learned to manage somehow. For those not motivated, like redrobin says, it probably takes tough love.

No, Asperger's is not an attitude problem. But it sounds like your son has an attitude problem on top of having Asperger's.

Seems like a lot of others talk about lack of ability. It reminds me of something Temple Grandin says about aspies in her generation having it better: because they were expected to act normally and had no one to coddle them. Having grown up in a dirt poor family and not getting diagnosed until 25, I can definitely relate. It's hard to be motivated when you think you have a disability, and everyone cuts you too much slack.

Ability levels vary among people with ASDs (and among people in general, of course), as do attitudes and motivation. Some people can figure most things out on their own, and find ways to manage, and some people can't. Sometimes if people don't get the support they need, they can just keep failing over and over -- never get anywhere in life, and sometimes come to serious harm. Other people may need support, not get it, and still manage to get through life more or less ok. It depends on the person, their life experience, their life circumstances, and, to some degree, their luck.

I'm not saying that there's no truth in what you're saying -- there is (makes me think about how one of my fears about being diagnosed with autism was that other people would look at me as totally incapable of doing the things I want to do in work and life, and I think if a person is convinced they'll fail before they even try then that person probably won't try -- their failure ends up a self-fulfilling prophecy)...but I speak from a perspective where I've had to learn the hard way that beating my head against the wall and pushing myself farther than is reasonable based on my own personal limitations gets me nowhere. I was not coddled and I still failed to succeed without support. I can do a lot of things, and am quite capable in many ways, but there are certain things I cannot do and certain limitations I cannot change, and I truly believe that I can be more successful if I accept that fact and learn to work around it.

None of what I said was meant to imply that you shouldn't have expectations of somebody just because they have a disability -- nor was it meant to imply that having a disability means you shouldn't be challenged or shouldn't try to do things. What I was trying to get at was that a reasonable expectation for one person might be an unreasonable expectation for another, and skills that one person takes for granted might be things another person struggles with, or even simply cannot do for one reason or another.

Is he complying with any of it? (The cleaning his room part, keeping up with chores, without complaining, for example--I am not sure what get up and get out of the house means, if he has nothing to do)

If he is complying with the cleaning and other chores, and he hadn't been before, that is pretty huge progress all on its own. I think that would be reason enough to extend the timeline and not feel like you are failing to follow through. Respectfully, a 4 week timeline to achieve all you have outlined is very low based on what his skill set may be. I know my son is twenty years younger, but I would be ecstatic if my son managed to do either of those tasks on a daily basis within 4 weeks.

Your son could be really depressed, being 27 and living at home, and not feeling independent. I know he has gotten pysch help, which evidently has not helped, but he may need a lot of help with all those tasks. Have you shown him how to use Monster, and maybe applied for a job for him from there, to show him how? I don't think it would be "cheating" if you did the work of setting up the profile, and showed him how to search and apply, and fill out the forms when they pop up.

If you cannot deal with him at home, would you at least be willing to try to set him up in a group home, get SSI as Sweetleaf mentioned? He seems resigned to homelessness, and I can't imagine that will do him any good.

Last edited by ASDMommyASDKid on 20 Apr 2013, 8:17 pm, edited 1 time in total.

I'm glad you understand that it's not an attitude problem.

I think the professionals are wrong and that if you follow their advice about kicking your son out onto the streets, things will end badly.
If you had a blind child, and the professionals told you to threaten to kick him out unless he could just see, you'd tell them not to be stupid; that obviously coping strategies to work around the blindness would be needed.
A disability of the brain is no different.

Ultimatums and punishment do not cure disabilities.

My suggestions:

- Ask him if he knows how to do the things you're asking him to do. If not, sit down with him and walk him through the process of doing them.

- Back off on the "5 jobs per day" thing. Where I live I'd be hard-pressed to find 5 jobs per week that I could reasonably apply for.

- I find that having a template for job application letters really speeds along the process of applying, as much of the information is the same on each application. The only things that really change are the company name, person to whom you're writing, and why you want the job.

- Could his lack of interest in a job actually be because he doesn't think anyone would hire him? Could he be depressed? Could he be overwhelmed by the thought of such a big change in his routine? These are questions that I'd be asking him.

- On the subject of the change in routine, you've thrown a lot of changes at him at once with your demands. If it were me I'd be shutting down and unable to cope.

- Could his "not caring" about potential homelessness be despair at the fact that people are demanding things of him that he doesn't know how to do?

- On the subject of having a lot of new things to do: he may not know where to start. The first thing to do may be to help him prioritise every task that he's been given.

Sorry if any of this is hurtful, but you are threatening to throw your own child out onto the streets because of symptoms of a disability. I hope some of it is helpful.
If you have any specific questions I will be happy to try to help.

Both Temple Grandin and I had a verbal language delay and other severe symptoms as children, so we came from a position of being more severe than most people currently diagnosed with Asperger's and still managed to live independently eventually. Can't say my life is a model for anyone by any means, and I've made lots of mistakes due to my condition, but at least I have not been dependent on my parents for more than 8 years.

Anyway, I think if I had grown up in an upper middle class home I would have been adjudged incapable of living independently and, therefore, kept at home well into my 20's if not beyond. Having parents who had too many kids, severe money troubles, and, therefore, didn't notice my disabilities very much, as well as a bad home situation, ended up being a blessing in some ways.

There was no one to tell me I couldn't live independently. I just did. I thought I functioned very well and never had debt or money troubles, until I got an NT girlfriend 4 years later at age 21, and she kept telling me that I was completely dysfunctional and couldn't take care of myself even though I seemed to have managed just fine for the past 4 years. I couldn't drive, or supposedly, cook either. I had horrible executive functioning skills and no understanding of people, so I was supposedly someone "just waiting to be mugged or taken advantage of" although neither has ever happened. 4 years after that, most of these things are much better, and at age 26, I might be judged as having the skills to live and function independently, with some difficulties in certain areas, even though I have been doing it for more than 8 years.

I bet, at 18, my GAF would have been about 35, which is quite low. At age 22, it was probably around 45. Last fall, it was judged to be 50, although that was a low point due to a severe depressive episode, so it might be more like 60 the rest of the time. Unsure. But 50 is technically too low to live independently, although I've definitely been doing it.

I bet, if I grew up in a normal home, my parents would have had a similar attitude to my ex girlfriend, which would have been damaging to me, and I might never have left the house.

What you're saying about your experience does make sense to me, and I think what you're saying about how attitudes about ability/disability can affect a person's confidence/motivation/development-of-skills is a valid point...I'm not sure if we're debating something because of something I said or if you were just adding more to the thread by elaborating on what you said earlier...?

Applying to five jobs a day is hard. Especially when job postings have different keywords.

Has he visited an employment center? It would help with getting out of the house and keep him focused. I am talking about the type that offers resume advice, not a placement agency.

Having an unemployed adult child is hard... I saw that in my parents when I was at home. I am considered higher functioning with a better attitude, and so I learned to cook... it gave me a feeling of accomplishment even when I could see nothing else for my day's work.

Shineb, I feel for you and your son. I went through too many contracts not to. At some points, it just feels so depressing and scary. All my friends had jobs then, so I felt so out of place.

Jobs that hire quickly tend not to be great ones..... ones that need a lot of public interaction.

Job hunting takes time and perseverance and dedication.

This is the problem with a barely functioning Aspie adult.

There is not much help out there at all for an adult. If you can find it, it will $$$. I'm talking about things like therapists for executive functioning skills etc...where if your son was a minor, he'd get all that in school.

Your son is my husband right now. Fior (DH) has

1) depression
2) anxiety
3) dog s**t executive functioning skills, which are HORRIBLE.
4) will not do anything unless the gun is to his head

What to do?

Find the best therapist you can that knows about adult autism or someone who specializes in ADHD. Fior's main issue is his executive functioning skills. On a good day he.just.can.get.it.going, couple that with the depression and anxiety, it's absolutely insane.

If I kicked Fior to the curb, he'd wind up in a motel room with a hot plate. He functions at a 14 year old teen level functionally. He can talk about astrophysics with the best of them, but say,

-you need blood work drawn
-make an appointment to see a doctor

And he will spiral out of control with panic. He has no clue, and he will never have an innate clue. I've let him flail around, trying to do it himself, but between the no executive functioning skills and anxiety, it just barely happens with no help.

Exactly where does/did your son test skill wise? He may be 27, but is it 8/10/15 years old skill wise? If he has the social skills of a young teenager, getting a job will be impossible.

Fior bitched about getting another job. I refused to let him quit his previous one, because I knew it was never going to happen. He can plan, but gets side tracked with unimportant details.
Resume? Please. Now, if I did about 60% of the work and screamed at him to get it done before some deadline, it might happen.

And forget a face to face interview. You can smell the anxiety coming off his body.

I'm guessing it is the same with your son.


What to do?

Come up with a step by step plan, and not the one where you are doing petty crap like holding stuff hostage. He's going to need a phone, computer and car to do anything adult like.

If your son is can truly not function, get him into the mental health system, on SSI, and apply for guardianship or whatever will force him into treatment for the depression. It will open up much more services than anything related to Autism. It will be easier to get him into a group home setting/small apartment via section 8 housing.

If it was my son, I would tell him, he needs to come up with a working plan of what he wants to do (either daily, weekly, montlhy-whatever he can handle), so he can start making it in the world, because I will not be here forever. See what he comes up with. You may have to break it down like when he was 5. Morning-get dress, eat-clean up mess. Depression can make those tasks so difficult.

And also tell him, if nothing materializes-in whatever time frame you both pick (and I mean truly nothing, if he tries and fails, consider that a +, at least that's something), you will look into SSI, for him, and possible guardianship. Remember guardianship has many many levels. It can be just handling medical issues, or finances to where you have the same control as if he was a minor.

My friend did the above with her 24 year old son. It went from total guardianship, so he could get treated for his depression, and anxiety, to now he is living in his own apartment, working part time, and she handles the finances.

The method of tossing him into the street won't work, because if his skill set is much younger, no amount of boot strapping will over come that.