I have been getting email lately from parents who are having difficulty getting professionals to accept the dual diagnosis of Down Syndrome and Autism. We had that same problem; however, our situation was complicated by the fact that Billy Ray experienced a series of severe seizures believed to be caused by a medication side effect.
The Down Syndrome Association of Victoria has a very good article on Autism in children with Down Syndrome. The article explains why it is difficult to diagnose Autism in Down Syndrome and gives suggested approaches. Two points in the article hit home relative to our situation.
While I had worked with many persons experiencing Down Syndrome prior to adopting Billy Ray, I had never worked with anyone as young as he was (15 months old). As a first time mother and without experience what babies with Down Syndrome experience, I assumed most of the things Billy Ray manifested were primarily related to Down Syndrome. I knew little about Autism at the time. Thus, I did not report changes to his developmental pediatrician. Additionally, he was experiencing multiple ear infections and other childhood illnesses which could have masked our recognition of Autism.
When the Autism evaluation was done on Billy Ray at 16 years old, questions about his early years revealed that early Autistic symptoms had been there but unrecognized.
The article suggests that once the diagnosis of Autism is established education and treatment approaches for Autism should be adopted and Down Syndrome should become secondary. I absolutely agree with that.
In the early years when Billy Ray was thin and an a sick little guy he was thin. The physical characteristics of Down Syndrome were not as apparent. When he began putting on more weight they were more obvious. Thus, when we go out in public people stereotype him as a person with Down’s. I like to say Down’s is the least of his problem.
That may sound as if I am minimizing Down Syndrome. That is not intentional. It is just that I have known and loved so many people who experience DS. While those I have known are all unique individuals, overall I have found the ability to love unconditionally and accept life as it comes, a common trait.
Autism as Billy Ray experiences it brings substantially more challenges than we had before the development of increased Autistic symptoms. I think the biggest thing I notice is the need to be on guard that things are set up for his comfort level, routines are maintained and communication tools used to the fullest extent possible. Gone are the more relaxed days that I experienced when Billy Ray was younger or with my former foster children who experienced Down Syndrome without Autism.
The stereotype that people with Autism can’t experience relationships or show affection is wrong. Many of our Autism Bloggers have shared photos on their blogs of their children making eye contact and having relationships with special people in their lives. I think it is easier for someone who experiences Down Syndrome to have those special relationships with people. My experience with Billy Ray is that he loves and bonds deeply but probably does less of it than other people I have worked with who have the single diagnosis of Down Syndrome.
Both disabilities are challenges without the combination. My observation is that the combination adds to their uniqueness. Some who experience the dual diagnosis will have traits more common to one diagnosis and some to the other.
Frequently when people ask me about Billy Ray’s diagnoses I like to laugh “Billy Ray is Billy Ray”. I am joking but very serious too. Because of the multiple diagnoses Billy Ray experiences including, but not limited to, Down Syndrome and Autism Billy Ray is a very unique person.
Until next time,
Peggy Lou Morgan
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