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There is a new controversial issue within the autism community. Some autism folks want to celebrate autism and others get angry at such talk. Recently, arguments came up with the launch of the National Council on Severe Autism (NCSA) from parents of higher functioning autistic kids. It was somewhat surprising at first.
When things are broken down, higher functioning kids are going to have less demands for services as they grow older compared to severely autistic kids. These kids will have much more success in life and will go on to have more independent lives. These kids will go to college, get jobs and get married.
On the other side of things is the severely autistic person. These kids are lower functioning and require significantly more resources. These kids elope, show behavioral problems, need help with activities of daily living and very often have little or no speech. These kids are the ones that will need lifelong services, go into group homes later in life and need at least a one-on-one in school.
For parents of high functioning children with autism there is much to celebrate the progress of their children. Their kids make great strides throughout their lives and can live independently. These parents should be complimented on their dedication to getting their child the services needed and helping these kids make great strides.
On the other side, parents of severely autistic children are often very isolated. Their children have an extremely difficult time in social situations and thus parents accommodate by isolating themselves and their kids. These kids are also the ones that show aggressive behaviors.
Aggressive behaviors come in lots of different forms including self-injury, destruction of property and attacks on others. The stories I’ve heard about severe behaviors and what parents go through is often kept quiet and not widely known on the internet or social media, perhaps the severity of the behavior is quite traumatizing. These stories are beyond scary and upsetting. It is not uncommon for parents of severely autistic children to be attacked by their child. One of the most devastating stories I have heard was of a single mom who has a late teenage son with raging meltdowns. This woman had to lock herself in her bathroom as her son was breaking down the door trying to attack her. These stories are not often discussed over the severity.
Property destruction can be devastating. Picture the kid who rips down a flat screen TV or pulls a toilet out from the ground and floods an entire bathroom. Property destruction can include breaking down walls, smashing windows, shattering expensive glassware and more. It is not uncommon for families to give up having nice homes because of the destruction.
Finally, the emotional toll on families with children with autism can be devastating. It is not surprising to hear stories of families that lose their marriages, lose their social life, lose their life savings and lose their dreams. The financial costs can be quite debilitating for families. Legal fees, medical costs, and costs for the various therapies add up, families go into debt and families go into financial crisis.
Ed Burleigh is a dedicated father to both of his children. Ed’s daughter Sadie has severe behaviors and epilepsy along with her autism diagnosis which lead her to a stay at a residential treatment center for 15 months. Upon Sadie’s discharge, Ed started “Saturdays with Sadie” a Facebook page dedicated to Sadie healing his relationship. This page offers insights into parenting an autistic child with behavioral problems and support to families coping with autism. Ed has a passion for helping other families with kids on the spectrum.