Caring for Michael 
13 Rules of Survival with Asperger's Disorder      

By Jonathan A. Salit

 

  1. You are the caregiver and they are the patient. It can be very easy to slip into their world. It takes a conscious effort to avoid. Do not get caught up in their craziness. Be the alpha dog, be strong, be kind and above all else, be consistent!

     Michael will say, “The rules did not say ‘Michael, do not do this’,” so he thought it would be ok.

  2. Behavior modification is key. Slowly, almost painfully slowly, along with consistency, you can improve the quality of both your lives. Nothing  you, or anyone else  can do, will change this patient; the best we can hope for is some sort of common ground through positive cognitive behavior modification, a fancy way of saying learning.

  3. One of Michael’s things is food, so when he decides to act up, and every one does, I simply tell him his punishment will be chicken. Now understand that punishment chicken is really no different than regular chicken in the way it is prepared, but in his brain it is a punishment because I labeled it so.

    Remember we are the pack leaders, use what tools you have, improvise to make a better life for both of you.
     

  4. You will begin to see Asperger’s everywhere and in most people. When you see it in yourself, it is most distressing. Do not be concerned; we all have it. I have come to understand and  respect mine other than loath it.


  5.  

  6. There were times at the beginning that I thought I was really getting through. I now realize that the best I can ever hope for is some sort of recognition.

  7.  It was just after one of these heartfelt talks that I asked, “Do you appreciate everything that your brother-in-law has done for you?” His answer, as is often the case, came as a question. “Can I have an extra dollar to go to the store tomorrow?”
     

  8. Limits, guidelines, rules, call them what you will, they are a must. The most successful caregivers are the most rigid.  Every exception becomes their rule; therefore, no exception equals no violations. Two negatives always make a positive. However, that being said and being constantly tested, the human side does occasionally give in.

    On just such an occasion, I had prepared a gourmet breakfast, after explaining to Michael that this was a rare treat, that he was not to expect it again because it tested the limits of his restricted diet, and that he was to add nothing or ask for anything else. He says “Sure, sure, I understand; but do I still get potatoes?”
     

  9. This is a new disease, syndrome, symptom, birth defect, brain damage ... The point is, you did not cause it, you cannot fix it, and you can only treat the symptoms.
     

  10. Take time away from your charge. You had a life before and you should have a life now. In the end, you will both benefit from it. Try not to fall into the trap of talking about your patient as the main topic of discussion. This is harder than you think. Our charges do so many fascinating things that are truly amazing in so many ways that others are very interested.
     

  11.  It is not possible for them to think of anyone but themselves first. This not personal, it just is.

    Michael once told me that when his parents die (they are holocaust survivors currently in their mid eighties), it will be his fault ”because people will say, ‘Think of how long they would of lived if they didn’t have Michael’.” He was serious.
     

  12. We are rewarded those times that they do remember and do get it right. We are rewarded in that even though they do not appreciate what we do for them, we do make a difference.
     

  13. As childlike as they are in so many ways, unlike children, they will never grow up. If you are that one in 10,000, it means you will never be appreciated by the person you are caring for. You will be the savior to the family, although they will rarely visit.
     

  14.  The person you are caring for remembers everything that is important in their world. They have total recall and can retrieve that information instantly.  However, remembering other such mundane things like putting dishes away, picking up something that drops, taking medicine, turning off the TV... that they choose not to remember. It’s not malicious; it is just the way they are wired.

    Michael can look at the TV Guide once and in the time that it takes to read it, he has memorized everything that is important for him to see for that entire time; he can give time and channel at will. “Michael, is that your empty bag of grapes in the living room?” “I guess I forgot.” (Grapes aren’t allowed in the living room.) 
     

  15.  Change at best is difficult. Any change in schedule or food or anything else is best handled slowly and carefully. This is an area where the effort really pays off.   I had told Michael I was moving the couch from the living room into his bedroom. He liked the idea and I gave him plenty of warning. Arriving home to find the couch moved, he stood there and asked where the couch was. I told him to look in his room. As he entered, he smiled, looked me straight in the eye and asked me what happened to the couch in the living room.
     

  16. You are their conduit to the other world. You are their life line. No one understands them as well as you do and no one can have as much influence on their lives as you can. It is an awesome, most times thankless, responsibility that I hope you appreciate and love as I do. For all you do, THANK YOU!

     www.aspergers.com/aspclin.htm

 Subscribe to our weekly e-newsletter