Expert: Celtica - 9/3/2008

Question
My 17 year old son has autism.  He is very low functioning.  And in the last 2 months he has stopped eating and drinking on his own.  He will only take a bite of something or take a drink of something if he is told to do so.  Every meal consists of "take a bite" "take a bite"... for every single bite.  And he'll carry around his bottle of juice or water all day until you tell him to take a drink.  At that point he'll drink until you tell him to stop.  Up until the last 2 months this has not been at all normal for him. He has lost 30 lbs.  He used to eat a lot and eat it fast.  I do not believe the problem is with a change in likes or dislikes of foods.  He appears to still like the same foods - its just that he won't proactively take a bite on his own initiative.  He'd wait hours with the same piece of food in his hand until someone takes it from him or tells him take a bite.  Last night he was hospitalized due to what we now think was dehydration.  We had him at the park and he became really weak and tired and he can't communicate with us and we didn't know what was happening so we took him to the hospital.  He had a bottle of Propel water with him but hadn't taken a drink.  So if he was dehydrated and needed a drink, he let himself get to the point of almost passing out and still didn't take a drink on his own.  So my question is, is this common among with people with autism (even though this is a very new behavior for him)?  What could possibly be causing him to suddenly stop eating and drinking on his own?  Do you think this might be a mental barrier or should we continue probing for physical ailments that might be making him not want to eat (although the hospital and his drs cannot find anything physically wrong with him)?
This behavior goes beyond eating and drinking too.  He seems to have stopped doing a lot of things he used to do without being directed.  He won't pick a movie to watch anymore, won't flip the pages of a book without being told on every page, etc.
Sorry for the long question but wanted to give you some background and history about him.  Thank you for your time.

Answer
Hi Amy,

thanks for your kind comments. You're welcome to ask more questions any time you want. I'm glad I could help !
C.



Hi Amy,

I'm sorry for not replying sooner.
This is a very difficult question. First of all I'd rule out all medical problems (did they also check his teeth at the hospital ?)

If there is no medical reason for this behaviour, there are a few explanations.
He's a teenager, and while puberty is a hard time for everyone, it may be even harder for us people on the autistic spectrum. Some of us have to cope with intense anxiety and other things. This may lead to some kind of "regressing". I also find that I had lost some skills by my late teens/early twenties I had before which I only regain now, some 10 years or so later. Why this is so I'm not sure. I guess you just have more energy as a child, and nobody expects you to be able to do things, whereas as an adolescent or young adult, you're suddenly expected to be able to do so much more that it can become overwhelming.

Your son's behaviour somehow sounds a bit like my own reaction to extreme stress though. Is there any major stressing factor in his life (think of school (changes in the classroom, teachers, anything), or leaving school soon, friends (or lack thereof), or frustration because of his autism, or other things. Also think about things that might bother him sensorily - like flourescent lights that weren't there before)? And take note that these "situations" might last months, or even years! Even if there is no "open" stressor, think of anything that might be a continuing, and for other people barely noticable source of stress. In such situations I often find I cannot "act" anymore, I can just "react".
I can, for example, move if told to get up and go to bed, but left on my own, I might not be able to stop doing whatever I'm doing at the time, and get up and get ready for bed, even though I might be extremely tired, and even *wanting* to go to sleep very badly, and it may sometimes take hours until I finally can move. This usually gets worse when I'm stressed and tired (tiredness is also a major source of stress, so there might be a vicious circle there), and get's better when I'm happy and relaxed.
I don't know if this helps. No two people with autism are the same, so this might not apply to your son at all. I don't want to worry you but I'd also check if he's showing sings of depression (this also sometimes makes people apathetic and uninterested in things they enjoyed before), anxiety or OCD (having suffered from OCD myself, I know this could also make you stop doing things if you think something terrible might happen when you do them).

Probably his behaviour may also be interpreted as a "cry for help" or even his form of teenage "rebellion".
I think you should probably seek help from a psychologist, preferably someone who has worked with people on the autistic spectrum before who could help you to make sure it's not depression or any other disorder (you can probably contact the ASA (http://www.autism-society.org/) for adresses .

Hope this helps,
C.