Severe autism in children has one advantage over severe autism in adults; it’s caught early and children are able to get many necessary therapies started to help them function on some level. Children with severe and profound levels of autism may look as though they are completely unaware of the world around them. They will not speak at all, and may only utter guttural sounds or shrieks.
They may be profoundly and acutely sensitive to any and possibly all exterior stimulation, but produce stimulatory experiences that they enjoy and will repeat again and again. For example, a child who screams in terror of noises like a vacuum cleaner or blender will crank the volume on the TV or music player just for background noise. He or she may refuse to be touched but repeatedly grab onto others or rock or bang themselves against hard objects.
Toilet training is next to impossible, although some parents have accomplished it. Adult undergarments are used in place of toileting because these children will wet the bed even when concentrated effort has been given to get them up every few hours to go. Parents who have a child with profound or severe autism may initially worry about the quality of sleep their children are getting because of the rigorous toileting schedule, but most kids with autism will wake up at least once during the night anyway.
With regards to education, children with profound and severe classes of autism will not be able to join chronologically aged peers in the regular classroom. They will have to spend all their time in a special needs classroom receiving therapies in speech and language, physical, emotional, and occupational development areas. Days with these children are often extremely challenging, and only the teachers who are trained to work with them will be able to handle the situations that come up.
It may seem hopeless to even advocate for these children, but it isn’t. New studies recently suggest that these children on the extreme end of the spectrum are more aware than they appear to be. With computers and tablets in the classrooms and in the hands of these kids, communication that makes sense has begun. Expressing in words and pictures through electronic devices seems to help them skip over the connection with other human beings but still “talk” with them about things going on around them.
Sign language helps them connect too. When the disorders are caught very early, sign language starts almost immediately in order to help these children communicate basic needs. Positive reinforcement and consistency helps it continue. Once it’s established that they can hear, people should talk to children with severe to profound autism all the time and sign as much as possible.
Exploration to find toys that help these children connect in even the smallest of ways is a long process, but worth it to the parents and teachers that work with them every day. The items kids like the most can help motivate them to understand what is asked of them and to attempt it. Some children with severe autism have made great strides despite their diagnosis once their special gifts and interests were discovered.
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8. Autism support groups for parents
Unfortunately, a lot of adults with severe to profound autism remain diagnosed improperly. Since it was once thought to be an extremely rare disorder, adults on the extreme end of the spectrum have been labeled as “developmentally disabled with mental retardation.” The majority of them don’t speak but attempt to and certainly show an awareness of what others are saying about them and to them. In that manner, their condition almost seems to have improved from when they were children, a definite sign that they have something other than DD with MR or subpar cognitive functioning.
These adults were institutionalized, and once removed from the institutions to live in CBRF’s, they have not been reevaluated for their state of functioning nor are expected to do much while living in the CBRF’s where they could actually learn some skills. Stunted in the institutions which were once horrible places to live, they continue to be stunted living in the community because their guardians are not knowledgeable enough about autism to have their charges reexamined.
Thankfully the children who are presently growing up with autism on this far end of the spectrum will be diagnosed correctly, won’t suffer the institutional hardships of those that went before them, and have a greater access at community supports and parent knowledge than ever before. Long term care fostered by the government makes way for the coming autistic adults to be properly cared for and supported by trained individuals who can continue to teach the autistic adults how to function on their own.
Additionally, for those that can at least walk and toilet themselves, simple jobs such as sorting and packing items in a plant to bagging groceries or greeting people as they enter a store are realities. Despite their communication barriers, the children with severe to profound autism today will be able to work in their futures. All similarities to a more normalized life are possible with adequate adaptation.
Does that mean they will drive a car, get married and have children? No, but they will be able to do a lot of other things that average people once thought special needs children and adults couldn’t do. Parents who despair for their children thinking they will have to find a way to support them the rest of their lives will be glad to know that we live in a world that is no longer like that, and there are other people who are willing to train the grown up children with autism how to do average, daily things.
Parents might still have to control the finances, pay the bills, and take care of other odds and ends their children can’t and won’t be able to do; but it makes a big difference knowing they won’t have to care for all of their adult autistic children’s needs.
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