I wrote to someone I know who has created a wonderful list of links for parents of Autistic children. I asked her if she had found any that were specifically addressed to low functioning kids. She said that she hadn't and it appeared that most people had sort of given up on lower functioning folks. I think that is partially true. When the media looks at developmentally disabled persons they tend to do the higher end of the scale.
Corky, from the Life Goes On television series, would be considered high functioning. He was fairly independent in most areas. He needed additional help both at home and at school but he did not require total care and supervision. Sometimes people expect all disabled folks to function at those levels.
My son, Billy Ray, has been high function and now is much lower functioning. A medication reaction caused him to have a series of severe seizures. He has experienced more severe symptoms of Autism since that time. When he was little and his primary diagnosis was Down Syndrome he could take his own bath except for washing his hair, be trusted to play in his room or outside in the fenced yard independently, feed his dog and many other tasks totally independently. He could be left alone in his room while I took a bubble bath or cooked dinner.
Following the seizures his ability to do much independently changed. He needs subtantial assistance with hygiene, tasks and requires to someone to be with or near him during his waking hours. He would be referred to as low functioning because he needs assistance with most activities.
I have no problem with the designation low functioning. The problem I have with that is many people consider low functioning as no functioning. Billy Ray has to have someone near him at all times; however, he delivers Meals on Wheels to senior citizens every week (his caregiver is always there and drives the van). The people on his route really enjoy seeing him and he loves them too. He could never hold down a job but he has some functional ability to give to his world.
Persons who appear to be low functioning might be able to function at higher levels of independence and with less negative behaviors if adaptations were made to the way they received communication, their schedule, etc., etc. It is my hope that Parenting Your Complex Child will help parents to observe and track what works best for their individual child and adapt his or her life to what works best. Billy Ray is able to do much more when we discovered the ways he needed to do certain things to feel comfortable and secure.