Q.

[Anonymous]

SPECIAL HELP NEEDED. This is for a 21 year old Asperger's (ASD)/Anxiety/ADHD DS who had an IEP throughout high school and is working well with the Office of Special Disabilities at his university but cannot get out of bed. He cannot conduct many life skills like making appointments with counselors, checking thoroughly for homework assignments, he cannot dress correctly, he cannot remember to wash hair, he cannot function well on their own, he cannot make smart choices about studying. At college. DS sleeps all the time and even the noisiest alarms in the world will not wake him. At home the pattern stays the same (and has always been the same) except we have to yell to forcibly get DS out of bed. DS can sleep up to 20 hours straight on his own. DS is medicated with Cymbalta 90 mg 1x daily for mood, etc. (previously was on sertraline which is the generic name for Prozac); Vyvanse 70 mg for ADD and Amphetamine salts for booster to help him get up and out of bed (which he rarely remembers to do). His shrink says there will be no change until HE wants to change. We are investigating a sleep evaluation but money is tight. Has anyone tried the College Living Experiences, CLE. http://experiencecle.com/ in Rockville. It is supposedly a transition program for Spectrum children between high school and college. I didn't think we would need it but DC is finding college just too difficult. No snark please. Our marriage is at the breaking point over this "adult" who functions at the level of a 12 year-old level and we have other children we need to focus on. Having DC drop out now is not a good choice because we would take a total loss on the semester plus DC is unemployable until he gets his sleep issues and desire to live and function under control. DC cannot drive, too. So having DC return home would mean DC sleeps all the time and does nothing. Yes, we've taken iphone away and computer screens. Please remember when making remarks that we are not talking about a normal 21 year-old. Think Temple Grandin but without the motivation. Perhaps DC has gone as far in college as he can. It would be a shame to give it up because DS can do the work when motivated (gets As and Bs) and has a 142 I.Q. but we, the parents, are beyond exhaustion with how much time we have to put into making DS do what DS needs to do at college in order to get up, get dressed and get to class. Yes, he is probably depressed but he is medicated to the max. for this. Please no snark. My wife and I are having nervous breakdowns over this and the other children are suffering while we scream at the eldest to get out of bed.

[Anonymous]

I am only the parent of a toddler so my recommendation might be ridiculous but could you hire an ABA therapist or someone similar to go wake him up each morning and set his schedule for the day with the hopes that eventually he will wake up and do this himself. The other option, not sure if it would be appropriate, is one of the military type transitional schools. A few boys I grew up with went to these types of schools. They are for kids after highschool but not ready for college. The only ones I know about are down south. Obviously, you would have to find one that understands autism snd isn't just drill sargents.

Good luck to all of you!

[Anonymous]

Thanks 13:53. We've tried having past tutors arrange the studying day but DC went off on his own plan of studying. That was costly in addition to regular tuitition, room and board. We've tried having DW call every morning to get DC up but that's getting very old and annoys roommate. Often DC doesn't answer the phone so we have to keep calling. We've bought every alarm clock ever made - he sleeps right through them. We do have a call into ODS at DC's university to try and find him an on campus therapist with experience with Spectrum kids who just can't make the transition to college (but we are in year 2 and still fighting this!). The shrink says transitions are difficult for Aspies but we can't keep going at this rate of support. Everything else in our lives is being neglected because of phone calls to/from DC. Problems with ODS. Problems with professors saying "I don't know why you should get extra time, you look perfectly normal to me". More calls to ODS. Nag calls to DC to remind DC to go to ODS. Sudden panic attacks over the decision whether or not to drop a course. Sudden panic attacks over papers that were "forgotten" that we have to hire tutors to help DC through. We've thought of military colleges but DC could never get into VMI with his disabilities and I don't know of a college level institution that would be appropriate. DS also isn't physically fit (we have to nag him to exercise) enough for a military-style institution. Most of the college-level transition institutions are frightfully expensive. We've already exhausted college funds, savings and our retirement for this child/adult. We really don't know what to do.

[Anonymous]

OP,

First big hug. I assume you're looking into the CLE program so your DC can live at home and attend that vs. the college where his now? Is that school local?

B/F you look to a different program, you may need to back up a step. It sounds like he needs a functional behavior intervention for the basics like dressing, grooming.

I would contact Robin Allen who is a behavioral therapist:
http://www.robinallen.com/services.html

She comes off a bit abrasive, but she has good info. She also has more clients than she knows what to do with so she may not be able to fit you in. If not, she can probably recommend someone.

[Anonymous]

Anonymous wrote:SPECIAL HELP NEEDED. This is for a 21 year old Asperger's (ASD)/Anxiety/ADHD DS who had an IEP throughout high school and is working well with the Office of Special Disabilities at his university but cannot get out of bed. He cannot conduct many life skills like making appointments with counselors, checking thoroughly for homework assignments, he cannot dress correctly, he cannot remember to wash hair, he cannot function well on their own, he cannot make smart choices about studying. At college. DS sleeps all the time and even the noisiest alarms in the world will not wake him. At home the pattern stays the same (and has always been the same) except we have to yell to forcibly get DS out of bed. DS can sleep up to 20 hours straight on his own. DS is medicated with Cymbalta 90 mg 1x daily for mood, etc. (previously was on sertraline which is the generic name for Prozac); Vyvanse 70 mg for ADD and Amphetamine salts for booster to help him get up and out of bed (which he rarely remembers to do). His shrink says there will be no change until HE wants to change. We are investigating a sleep evaluation but money is tight. Has anyone tried the College Living Experiences, CLE. http://experiencecle.com/ in Rockville. It is supposedly a transition program for Spectrum children between high school and college. I didn't think we would need it but DC is finding college just too difficult. No snark please. Our marriage is at the breaking point over this "adult" who functions at the level of a 12 year-old level and we have other children we need to focus on. Having DC drop out now is not a good choice because we would take a total loss on the semester plus DC is unemployable until he gets his sleep issues and desire to live and function under control. DC cannot drive, too. So having DC return home would mean DC sleeps all the time and does nothing. Yes, we've taken iphone away and computer screens. Please remember when making remarks that we are not talking about a normal 21 year-old. Think Temple Grandin but without the motivation. Perhaps DC has gone as far in college as he can. It would be a shame to give it up because DS can do the work when motivated (gets As and Bs) and has a 142 I.Q. but we, the parents, are beyond exhaustion with how much time we have to put into making DS do what DS needs to do at college in order to get up, get dressed and get to class. Yes, he is probably depressed but he is medicated to the max. for this. Please no snark. My wife and I are having nervous breakdowns over this and the other children are suffering while we scream at the eldest to get out of bed.

Hi OP - I am sorry that you and your family are going through this. It sounds to me that your DS is non-responisve to you, possibly because you're his parent. And it seems like enough of an extreme case to me that - if I were in your shoes - I would immediately start considering some type of Outward Bound-like program specifically for Special Needs adults that need to learn how to survive on their own. When I was living in California there were quite a few of them. And yes, they are expensive but it sounds to me like you're near the end of your rope. And if your DS is going to experience success in life, he may need an extreme type of program.

http://www.outwardbound.org/struggling-teens/struggling-teens/

http://www.redcliffascent.com/about-us/alternatives/

[Anonymous]

College isn't for everyone, even if they are really really smart.
How about a vocational assessment to see what kind of job he could do or has interest in-have you applied to DORS?
Alternatively, how about one of the programs like NYIT or the program at Lesley univ: a vocational program that also works on life skills but has built in supervision and training. Lastly, how about one of those bed alarms like they make for deaf people, that shake the bed?

[Anonymous]

Dad, I have read your posts before and know that you and your spouse have really tried hard to support your son. While I usually post as the parent of a young adult with a cognitive disability who is working part-time. resides with us and will always need some direct support in her life, I am posting as the parent of a high performing typical daughter who went off to a top tier college and by her second year we learned we, too, had sent a "12 year old" in terms of emotional and at time development IQ in terms of just dealing with life. Twice we tried to support her to help her manage her issues with severe lack of sleep, anxiety and depression at time, but to no avail. She pulled out sophomore year and then again at Thanksgiving her senior year. In her case it was not academic performance, but just managing other aspects of her life. So as it relates to your situation:

- Try as you might to keep DS and his problems out of the direct family setting, you are probably only fooling yourselves as this is a short-term scenario.


- From all of your previous and this post, your son has a serious sleep issue that needs to be evaluated and defined. Until this is done spending any more money on interventions or college courses is a waste of resources. (1) For your information there is a quick overnight "pulse ox" test which can be done with one simply putting a couple of electrodes on and a clip on one's finger. This will record to some degree of accuracy one oxygen intake over the night. From this test, a doctor can get an indication of whether a full sleep study is warranted. If you could get this done first at home, then you would have a direction on this. (2)You really do need to set up a sleep study ASAP back at home where probably you will have to go to the actual overnight sleep study as I did with my younger daughter to be sure that DS cooperates and gets the most out of it he can. There may well be a question of whether he needs to be off all his meds or some of them to get a worthwhile assessment. Something is wrong either physically or psychologically making him want to sleep so much.

- [b]Is there any way to get a second opinion on the medications that your son is on in terms of interactions and side effects to evaluate whether it might be worth it to try a different mix? If he remains on campus, it is key to find him a therapist out there who can follow him[b] It took a while, but team working closely together of psychologist and psychiatrist finally came up with a mix that worked for her.

- To be very truthful, right now DS is functioning in daily life skills and ability to work in any job setting well below the range of our daughter with an IQ of 55 and a moderate disability label. Having him away at college is only a "time and place holder" before he will be back in your home and entangling all the members of your family in is drama once again as we well know can happen. We also have a middle daughter who often was caught between the needs of the other two. Can he get a medical reason for dropping courses this semester and you get any sort of a prorated refund? I ask this because if he has an OK GPA, why jeopardize that with a sudden downturn to Cs and Ds.
Can you consider bringing him back to the area and using the resources of a community college until he can really get his mental health status balanced and learn to function n terms of daily living skills? Then he could transfer back or to another four year school.

I do know it is very, very sad to see a young adult with potential in so much turmoil despite your best efforts, and I do understand how it can monoplize the family dynamics, exhaust you and threaten financial resources. But you would want to avoid a young adult committing herself to a hospital when things finally spun so far out of control for her.

[Anonymous]

Speak to your kid's doctor about the "pulse ox" test. My internist will lend the machine to patients overnight. It is very easy to do.

I also recommend this place for a sleep study:

http://www.sleepdoc.com/

You need to find a new psychiatrist for medical management or at least a second or third opinion. It does not sound like the current medication is working. Here are some recommendations who have experience with AS/ADHD:


Gonzalo, Laje

David Chen:

Nora Galil, MD

Don't despair and good luck to you!

[Anonymous]

15:31 again

Another recommendation is:

http://www.hopkinsmedicine.org/psychiatry/specialty_areas/anxiety/

I'm not a doctor but what you are describing OP is not Asperger's. We all tend to blame the ASD but there is nothing about an ASD dx that should prevent your child being able to get up in the morning and living his life. All Asperger's means is that your kid has an unusual way of relating to other people. That's it.

I bet that once you get the sleep issues cleared up, it will lesson a lot of the symptoms including the inability to function. The anxiety will certainly lessen.

I would start with the sleep study and go from there.

[Anonymous]

Another vote for the signs of a medical problem. This is not AS -- I am related to both adults and children with AS and a complete inability to get out of bed is something else. off the top of my head it could be a sleep disorder, a problem with medication, severe depression, or any of a number of medical problems that cause fatigue. This is not about motivation.

[Anonymous]

Anonymous wrote:SPECIAL HELP NEEDED. This is for a 21 year old Asperger's (ASD)/Anxiety/ADHD DS who had an IEP throughout high school and is working well with the Office of Special Disabilities at his university but cannot get out of bed. He cannot conduct many life skills like making appointments with counselors, checking thoroughly for homework assignments, he cannot dress correctly, he cannot remember to wash hair, he cannot function well on their own, he cannot make smart choices about studying. At college. DS sleeps all the time and even the noisiest alarms in the world will not wake him. At home the pattern stays the same (and has always been the same) except we have to yell to forcibly get DS out of bed. DS can sleep up to 20 hours straight on his own. DS is medicated with Cymbalta 90 mg 1x daily for mood, etc. (previously was on sertraline which is the generic name for Prozac); Vyvanse 70 mg for ADD and Amphetamine salts for booster to help him get up and out of bed (which he rarely remembers to do). His shrink says there will be no change until HE wants to change. We are investigating a sleep evaluation but money is tight. Has anyone tried the College Living Experiences, CLE. http://experiencecle.com/ in Rockville. It is supposedly a transition program for Spectrum children between high school and college. I didn't think we would need it but DC is finding college just too difficult. No snark please. Our marriage is at the breaking point over this "adult" who functions at the level of a 12 year-old level and we have other children we need to focus on. Having DC drop out now is not a good choice because we would take a total loss on the semester plus DC is unemployable until he gets his sleep issues and desire to live and function under control. DC cannot drive, too. So having DC return home would mean DC sleeps all the time and does nothing. Yes, we've taken iphone away and computer screens. Please remember when making remarks that we are not talking about a normal 21 year-old. Think Temple Grandin but without the motivation. Perhaps DC has gone as far in college as he can. It would be a shame to give it up because DS can do the work when motivated (gets As and Bs) and has a 142 I.Q. but we, the parents, are beyond exhaustion with how much time we have to put into making DS do what DS needs to do at college in order to get up, get dressed and get to class. Yes, he is probably depressed but he is medicated to the max. for this. Please no snark. My wife and I are having nervous breakdowns over this and the other children are suffering while we scream at the eldest to get out of bed.

The shrink is unhelpful. There is no such thing as "being medicated to the max" for depression when it is obvious that the current meds are not working. Telling someone who NEEDS to sleep 20+ hrs a day that they need to be "more motivated" is ridiculous. Find your son another doctor since his current one does not know what he is doing.

[Anonymous]

I agree about getting a different psychiatrist. If you are depressed, the desire for change does not come. Finding the right balance of medications is key. The sleep issues may even be related to what he's currently on. It's probably a good idea to eliminate any medical issues regarding the sleep.

[Anonymous]

Thanks ALL. You have been so responsive and so kind (even though I was so upset when I wrote this I didn't manage to properly set up up the subject header). I will share all with DW. Has anyone tried New Directions for Young Adults - Dr Drew Rubin, Deerfield Beach/Boca Raton, FL.

[Anonymous]

OP back. I'm not happy with the shrink, either. He came highly recommended as someone who helps "older" kids/adults with Aspergers. He's $400 an hour, unresponsive to calls, and has poor office service. Anyone have a recommendation for an almost 21 year old Aspie? NoVa, Fairfax, Herndon or Bethesda area is fine. DC if we must.

[Anonymous]

OP - It really sounds like your son should be home hard as it may be on the family to get his physical and mental health problems dealt with. In my opinion with the history you have shared in past postings, ***his therapist/psychiatrist both should have told you of the need to find a therapist down in the community where he is going to college as he obviously had continuing issues. Such a clinician with son's approval could have kept you and DW apprised of his condition and given a professional opinion of whether being so far from home was wise at this time.

Your son can't do anything in terms of transition planning if he can't get out of bed in the morning physically and if he is over medicated or have meds which are not interacting with one another as supposed to. I did a quick Google search under Washington DC Psychiatrists+Aspergers+Young Adults and found a listing of several doctors. At least one was dually certified in therapy and medication management. Such a doctor might be best for your son or to have a psychiatrist and psychologist in the same practice where information on his complex case could be shared both in terms of a second opinion of where things stand now and what direction on treatment might be taken.

I can tell that you and DW are at your wits ends and financially are in a precarious spot, but just pouring money into a college program or into other ideas on transition planning for a young adult who can't manage his day at all along with his physical and mental health issues without DS being at home or in closeby area makes little sense. If he has any hope of moving on, he will most likely need to be in an area he is familiar with to start and could use his family home as the starting base. If you choose an out of area transition program, the question has always got to be will he be able to earn enough or you to pay enough for him to continue to live in the area once the program and supports end. And, does he really have the ability "to transfer skills" learned in one setting/community back home to where he would reside. Now if he has family say grandparents in Florida who could help this might in time be a reasonable approach, just not now.