I only saw this patient once in a meeting to apply for a new Waiver (short for Home and Community Based Service Waiver for Children with Autism Spectrum Disorder). It was an 18-year-old skinny boy, who barely spoke, and was only in the meeting for less than 2 minutes, and then was taken out of the room by his father.

 Both of the boy’s parents spoke Chinese, and his mother was about 50, and father about 60. Since the father accompanied the boy outside of the room, the mother did the talk. She was a thin lady with long black hair, and looked weary.  

The boy has severe Autism Spectrum Disorder. Although he was already 18-year-old, he still could not perform personal care completely independently, and needed supervision. For example, without supervision he would not brush his teeth in the morning or did it in a big rash. He still needed his parents to help with dressing, otherwise he would button his shirt incorrectly.

He could not make any food for himself, even the easiest things like mixing cereal with milk to make a bowl of cereal or spreading peanut butter or jam on bread to make a simple sandwich. His mother said that he is scared of the kitchen, and never went into the kitchen at home.

 The biggest problem for the patient’s caregiver, his mother, is the patient’s volatile mood. Out of the blue, he would conduct self-harm activity or hit his caregiver. Since his mother is his main caregiver, she was the most frequent victim. He also got into fights with his classmates from time to time.

 It was almost impossible for the boy to communicate with strangers even with the presence of his parents. There are two times that his mother tried to introduce helpers from social service to him to help him with daily functions, but failed at both times because the boy did not accept them. He was unable to stay quiet in a room for more than 5 minutes, so to make the meeting progress smoothly without interruption, his father took the boy out of the room shortly after introducing him to the social workers in the meeting.

The boy was in a special high school now, and he could stay there until he was 21-year-old. He already got ~14 hour service/week. So, his mother got paid more than $1000/month for taking care of this kid. His mother had another job one day/week now, so that she could leave the house at least one day in a week.

The woman said taking care of this kid took so much of her energy, and made her life so stressful, and her health was significantly compromised. As the youngest kid in her family, she was well taken care of and always joyful and could make other family members laugh. But now, because of this kid, she was weary and dismal, and almost became another person. Because of her health, she did not think she could take care of this boy much longer, and her husband was much older than her, so he also was unable to take care of the boy. Thus, she eagerly wanted to put the boy in a group home for autism patients soon.

 Social workers were sympathetic, but told her that the space in the group house is very limited. As a result, only mentally disabled patients in urgent situations would be accepted. For example, when the caregiver of the patient just died, and nobody could take care of him/her, or the patient has already been homeless et.al. Therefore, it is very unlikely for her kid to get into a group home in the current situation. She had two choices. First, get on the waiting list for group house but no other benefit now (even through, it would take a very long time before any space is available). Second, get into another program, so that the service hour of the boy would be increased from 14 hours/week to 20 hours/week now, and make an emergency application for the group home if something happens and she is no longer able to take care of the boy. 

She struggled with these choices since neither could give her what she really needs now, a space in the group home for her son in the near future.  She could not decide before the end of the meeting, and would further discuss with her husband and other family members back home.

It is a sad situation, and everybody in this family suffered a lot, especially the mother. I wished the best for this family.