Expert: Valerie Herskowitz - 11/30/2009

Question
QUESTION: I have a 17 yr old autistic that is non verbal and has rages every week but especially on the weekends. His rages are pretty bad and very violent. He smashes anything he can hit and he kicks and punchs anything in his way. I have the bruises to prove it. Is there anything I can do for this. I WILL NOT put him on anti psychotic meds as he is non verbal and I have read some very bad side effects from high functioning autistics that were bad. Since he can't talk and tell me if there is something wrong I wont go that route. We have tried several SSRI's, he is on Adavant as needed he has been on several kinds of meds and nothing worked. In fact the SSRI made his OCD's off the charts. He won't go to bed till at least 1 am and wont sleep till around 4 and if he rages it could be 7 am before he goes to bed. I dont know if there is depression. There is mild depression in my family and I believe in my Ex husbands as well. Im so tired and see no help in the furture. I can't put him school he is way to violent and they would just call and send him home. I need help. Im am talking to Dr. Mumford in VA but if you dont have insurance then you can foget the help. Is there anything you have found that helps with these rages. Im desperate at this point.

ANSWER: Hi Lynette
Yes I can answer this question as this is an area that I know well. However, let me just say, that my answer comes from the mothering side of my experience rather than the professional end.

My son is 18. He has had aggressive and self-injurious behaviors for several years. As much as you won't want to hear this, the only thing that has helped him is anti-psychotic drugs. They are not perfect, but they make a heck of a difference. My son is also non-verbal as well. Yes-there are potential side effect so you must be sure that you see a Dr every month and get blood tests every so often to be sure that everything is OK. But it makes an incredible difference and makes my son's life so much better. Again it is not perfect, but they keep him a lot more stable.

At this point, Lynette, you are going to have to go somewhere for a few hours and think and meditate or pray or whatever you feel you need to do. During this alone time, you must try and accept that your son has chemicals in his brain that cause him to act the way he does. You can't behaviorally fix these issues-I know-trust me.I tried everything and he has had many different biomedical interventions as well. I know it is a horrible way to live for both him and you. My son's behaviors got so bad this past year that for the first time, I was quite sad. I continually fight the sadness as though he is more stable, I can't do all the things we used to do. I can't just take him to a store without someone to help me and vacations are a thing of the past. He has hurt me and has tried to injure himself on many occasions. This year, he almost pushed my husband, his step-dad (dad-his real dad abandon us 13 years ago) out the second story window by accident, so we just finished building him a small apartment onto my house for him to live in with caregivers. The cost both financially and emotionally is something that can't be compared. So I know what you go through, but my husband gave me a subtle ultimatum. But I knew it was the right thing for my son's well-being as well.

But eventually, your son's rages will severely hurt someone or himself. You must look deep inside yourself and accept that you have to try other drugs. Other than anti-psychotic drugs, you can try some anti-anxiety drugs like valium or ativan which you can give him as needed rather than as an everyday event. We use them in an emergency as well as the anti-psychotics. SSRI's don't usually work with these kids eventhough it is often the OCD's that upset them. They just don't seem to do it-that is what my son's psychiatrist said.

IF YOU GO TO A GOOD DOCTOR AND HAVE REGULAR EXAMS AND BLOOD TEST, YOU SHOULD BE ABLE TO KEEP THE POTENTIAL SIDE EFFECTS AT BAY. I worry for my son and the potential side effects all the time-but I feel we have no choice. We pay through the nose to a good psychiatrist to see him every month and we get frequent blood tests (he has to be under general anesthesia so we get them when he gets his regular endoscopies for his ulcers).

As you can see, our story is not a pretty one either-YOU ARE NOT ALONE!

So that is the story-if you need support-please write me back anytime.

---------- FOLLOW-UP ----------

QUESTION: There is no money for care givers or building apartments or anything else for that matter. I make less than $20,000 a yr and while he does get SSI as you probably know its nothing when working with these children. I know his intestinal issues cause A LOT of the rages. Im working with Lee Silsby to help that issue. I know that meds could be an option but what do you do when the child you love can't speak and what he feels from the side effect is so bad that he thinks things are crawling out of his skin. I can't imagine doing that do my child. I am sad a lot now. The future is very bleak for all these children and their caregivers. I have been told that meds are the only way to go and nothing else with help. I will think on this long and hard it breaks my heart that this could be the only way to go. I thank you so much for your time in this matter. I will be contact again as you are the ONLY person I have come in contact with that has a child my son age with the same problems. Thank you again.  

Answer
Lynette

I have worked with many individuals who take anti-psychotics and none of them tell me that they feel like they have things crawling out of their skin. And if my son is happier on the meds, then I don't think he feels like he has something crawling out of his skin. Of course, each person is different and sometimes you have to try several medications until you find the right one. The side effects are usually more medically-oriented and can be watched by a competent physician.

If you are really scared to do the anti-psychotics, try the mild sedatives like valium or ativan first. You have to try something, don't you think? He can't go on like that. He must be miserable. Feel free to stay in touch-I know what you are going through!