narcolepsy and Aspergers

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PostPosted: Sat Jan 14, 2012 3:36 am Post subject: Reply with quote Edit/Delete this post
Sad Hello, I'm new here. My son was diagnosed in high school between his sophomore and junior year. He is able to do a lot of the things some aspies cannot, like drive. His grades in high school were haphazard but he did manage to get in college on our dime. After several problems being in a college that was not the right fit for many reasons, he is now at a college he loves and is doing well at. However, there are still many problems. First of all, in addition to be diagnosed with Asperger's, he was diagnosed with severe to moderate Narcolepsy. As a result, My son has a heck of a time waking up in the morning. He has fallen asleep at school and at one point, driving was no longer an option. He has been on a med to help him stay awake once he is awake that is helping. Now that there is a background, my son is almost 23, lives at home, is very rude at times and cannot get him self up in the morning. I have been told by many people, professional and otherwise, to simply kick him out! How can I do this in good conscious? His doctor has tried to get my son to understand that independence comes with a price tag, of sorts. In other words, since we would be paying for his living arrangements on or off campus, he needs to show us that he can take care of himself 100%. The doc even suggested a "bank" system, Every day our son got up on his own, he'd gain "points" in the bank that he can "cash in" when we all decide he is ready to move. The doc suggested that my son try to get 20 points in 30 days. So far, technically speaking, he has earned 0 in 15 days. My son is intelligent, has friends and has a bright future ahead of him. However, when he is home he can be rude, disrespectful and downright lazy, for lack of a better way of saying it. He always apologizes for his behavior but then does it again. In contrast, his younger brother, who does not have any issues, went to college in Florida at a year-round college and is home at the moment looking for employment. This causes our son with asperger's great stress. He knows he is behind his peers and blames us at times for holding him back. We have tried to explain that everyone moves through life at different paces. My husband and I disagree on some things, which does not help. We want to have 100% independence but do not know how to help him if it seems like he does not want to help himself. He even wavers on this by saying, "I need to live on my own", one day. The next day he says, "I'm not ready to live on my own yet". ANY advice in any way would be helpful. Thank you.

I was mainly concerned if there were other aspies out there that also have Narcolepsy. If so, how do they and their family deal with it?

I have a couple of close friends with narcolepsy. They fall asleep in almost any sort of setting and situation. In their cases I have observed that every time I've witnessed them nod off, it was within 45 minutes of having eaten a high carbohydrate meal or snack (or drank alcohol). Their conviction that they suffer from narcolepsy has blinded them to the connection between their eating habits and nodding off. I think that they are very sensitive to rapidly falling blood sugar.

Does your son consume a high carb diet?

Hello!

I used to have narcolepsy, until my obstructive sleep apnea was diagnosed and treated. Does he snore when he sleeps? That could be a sign of obstructive sleep apnea. There is also another kind of sleep apnea, also. It is called central sleep apnea.

I'm not a morning person, either. Perhaps an online, self-paced course of study might be better for him? I know you don't want to just throw him to the wolves to fend for himself, but perhaps if he thinks that might happen unless he gets his act together might help to motivate him to move forward in life. There are also special colleges just for people with AS.

These are merely a few suggestions. I am, by no means, an expert on the subject, but I must admit, I'm on the lazy, procrastinating side myself.

What snapped ME out of it was my decision to serve in the US Air Force. The highly structured lifestyle was very therapeutic for me, and I excelled there during my seven years of service. This was at a time when very little, if anything, was known about either AS OR sleep apnea.

During my Air Force electronics training, I fell asleep in class constantly. They were comtemplating 'washing me out' because of it.

When the instructor brought it up to his superiors, they asked him: "Is he passing his coursework?" He answered, "Yes, with a 'B' average." Their reply: "As long as he continues to earn a passing grade on his coursework, let him continue to sleep in class." I went on to graduate and serve with both honor and distinction.

Have A Great Day!

Rob

Hi rubylady,

I've had neurological impairments all my life (59-60 years). At first, the were regarded as as speech impairments and learning disabilities (regarded in the late 1950's as Mental Retardation). During adolescence, the impairments progressed to characteristics of partial complex seizures of epilepsy, with short periods of intense sleepiness after some seizures regarded as spontaneous sleep disorders (later also labeled a narcolepsy). I was officially labeled with Temporal Lobe Epilepsy at university, and a short time later, with Asperger's Syndrome and Geschwind Syndrome (everything overlaps). I currently regard the impairments having the most in common to a sclerosis, with most signs pointing to tuberous sclerosis complex (TSC).

IMO, the professionals you cite seem mistaken, as behavioural reinforcement conditionings seldom have a direct impact on neurological attacks (only successful with about 5% of cases of epilepsy, 20% of narcolepsy). In fact, neurological attacks themselves have much more influence and effect with incidental behavioural reinforcement conditionings (Superstitious conditioning noted by B.F. Skinner).

Much more detail involving narcolepsy is "Narcolepsy" by Merrill M. Mitler, Roza Hajdukovic, Milton Erman, and James A. Koziol, (J Clin Neurophysiol. 1990 January; 7(1): 93–118), often at: http://www.ncbi.nlm.nih.gov/pmc/article ... =pmcentrez
With, under Education:
"The American Narcolepsy Association (335 Quarry Road, Belmont, CA 94002) offers helpful educational materials. Furthermore, there are self-help groups throughout the country that meet local needs such as (1) identifying pharmacies with good service and adequate supplies of antinarcoleptic medication, (2) acting as an advocate in local disability and discrimination issues, and (3) providing understanding social contacts. These services are extremely important for the individual narcoleptic patient. The main problem with such self-help groups is that they frequently have no medical guidance, and some members may not actually have narcolepsy. Thus, misinformation about nonmedical treatments (e.g., special diets, exercises, etc.) is frequently exchanged in these groups—often by the testimony of a non-narcoleptic and to the detriment of bona fide narcoleptics."
(about at the middle down the web-page, or Page 9 of the publication/pdf download).

Other short citations are:
http://www.ncbi.nlm.nih.gov/books/NBK7419/#A2155
http://www.ncbi.nlm.nih.gov/pmc/?term=narcolepsy+autism

My "Godly" Becker's Nevus & sclerosis and priapitic phenomena with seizure disorders led to a bonding, and subsequent violent separation from church clergy, with my escaping to California and surviving on the streets much as in the movie "My Own Private Idaho" (my hostile Uncle GodBucks is outliving most everybody): Narcoleptic "Mike wakes up to being fellated by a client in Seattle, Washington. After his hotel encounter in Seattle, Mike returns to his favorite spots to pick up potential clients." http://en.wikipedia.org/wiki/My_Own_Private_Idaho

My Tadzio price tag helped fund me through university after a few years, but waning youth led to declining returns, and upon completing university, the neurological disabilities still precluded gainful employment. A lawyer later told me that I should have attempted to draw Social Security Disability from my parents social security accounts before being "gainfully" separated to the church's organizations. Therefore, unwise separation from dependency on parents can have dire future economic results.

Tadzio

To those of you with helpful advice. I appreciate all of it. However, a few points need to be made. First of all, my so does not eat a high carbohydrate diet. Furthermore, he does not fall asleep throughout the day, although he used to. The MAIN problem is he keeps going back to sleep once he is awake for the day. Every time I re-wake him, he acts like bear getting awoken from hibernation. The odd thing is that there are times when there is NO problem with the way he wakes up and other times when it is just horrible. The main thing is that he is in his final year or so of college and he needs to get past this. Any additional advice or resources would be great!

This sounds like a health problem to me, and you may have to get creative to solve it. Not that I have any good suggestions for it, but one thing I can relate to is the frustration that comes from seeing something you have no control over, but that is innate to you, hold back your other talents, which is exactly what this sleep issue is doing for your son. I suspect he can't see his way out of it, and that frustration is going to affect his behavior in other areas.

Sometimes you have to solve c to get to b, and b to get a. I don't see how you move forward on his other issues while the health one is holding him back.

ASD can have a similar effect, creating a type of invisible wall between a person and their goals, and breaking that down and understanding what the wall is and how to travel around it is difficult, too. Another reason your son is going to feel frustrated and unmotivated.

It is like he has a chain around his ankle and a glass wall in front of him. I don't blame him for having a little trouble with attitude.

But I think these are the things you already know, and I wish I knew what to tell you for handling them. I really don't, you have to feel your way through these things with a lot of understanding and a huge burst of creativity.

One thing I have realized reading these forums over the years: You can't expect a special needs child to grow up and become independent on the time table the world has set. But the problem is that they reach a certain age and the world stops helping you support them, ready or not. But I do not believe that failing to be ready for independence at 23 means the person cannot become ready for independence at 28. You have to figure out what their unique time table is and how to help them move forward in it.

There are very limited transitional services available for someone in your son's situation, but you could look into what might exist. Transitional housing, meet up groups, job interview assistance, etc are the types of things I've occasionally caught mention of ... But few and far between. It is an area where there still seems to be a void.

Sorry I can't offer more, and sorry for waxing a bit philosophical ... Past my bed time good luck, I do hope you can find some good answers. That you are asking the questions is, in my experience, an excellent start.

I don't know anything specifically about diagnosed sleep disorders,

That said, I will ask if you have had doctors rule out depression? The reason I say this is that it is a common co-morbid of ASD.

It would only be natural for him to have issues with this as he is clearly aware from what you said, as to the disconnect between what he can do for himself, and what he is expected to do. That would make him have more trouble getting and staying awake also.

Try to make sure if he does get referred to a specialist (and he is willing to go, which may be a problem) that the person is knowledgeable about spectrum issues, and it also has to be a good personality fit for your child.

There may be CBT or other non med options that will not exacerbate his sleep issues. (I don't know if meds would be contra-indicated or not, but some probably would be.)

At 23, you are not going to instill any more responsibility or values in him than you already have. There are certain virtues he must come by on his own, and he'll only be able to do that when he is independent.

While you may certainly have house rules, you must be careful not to treat him like a child because he is not. If he wishes to be independent and you impede him in this even if he is setting himself up to fail, he will simply grow to resent you. Sometimes people have to fail to learn how to do things properly.

Concerning him getting up in the morning, it is not simply a matter of lack of incentive or responsibility. He is struggling with a neurological disorder. He might benefit from speaking to others with narcolepsy about how they manage their condition. I can see this condition causing a degree of irritability as well, I would not underestimate how much it impacts him. Stable sleep wake cycles are integral to many aspects of physical and mental health.

Additionally, some of his rudeness may come from resentment or feeling as if he is being treated like a child. So, my advice is, treat him more like an adult. Let him make his own bad decisions unless it is something that might put his life of the lives of others at risk. Let him make his bed and sleep in it and sleep in his bed and not make it.