Blog #169~ I’m Very Aware of Autism and More
April is “Autism Awareness Month” – a time to promote awareness, acceptance and attention to those people who are diagnosed as being on the autism spectrum.
Yes, I’m very aware of autism, and more. So is anyone, who has been around my son. Nick is 23 years old, and has dual diagnosis of Down syndrome and autism, (DS-ASD). He does a good job spreading awareness wherever he goes. 🙂 Honestly, it’s hard for me to get on board with the “Light it Up Blue” campaign. Why is that? Because my son doesn’t fit in with any of the support groups for autism, due to his is lack of speech, cognitive and developmental delays.
“Autism or Autism Spectrum Disorder (ASD), is a serious neurodevelopmental disorder that impairs a child’s ability to communicate and interact with others. It also includes restricted repetitive behaviors, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning.”
Since my son has a dual diagnosis of DS-ASD, I’m going to put my focus on this area. According to The National Down Syndrome Society (NDSS) http://www.ndss.org:
“Children who have ASD may or may not exhibit all of these characteristics at any one time nor will they consistently demonstrate their abilities across similar circumstances. Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include:
- Unusual response to sensations (especially sounds, lights, touch or pain)
- Food refusal (preferred textures or tastes)
- Unusual play with toys and other objects
- Difficulty with changes in routine or familiar surroundings
- Little or no meaningful communication
- Disruptive behaviors (aggression, throwing tantrums, or extreme non-compliance)
- Hyperactivity, short attention, and impulsivity
- Self-injurious behavior (skin picking, head hitting or banging, eye-poking, or biting)
- Sleep disturbances
- History of developmental regression (esp. language and social skills)”
My son Nick, certainly hits most of the bullet points listed above. It’s a unique mix having a child with a dual diagnosis of DS-ASD. For many years, I felt isolated from the local DS support group because my child had many of those characteristics. Eventually, I was put in contact with a small group of parents that also had children with DS-ASD. This was a group within The National Association for Down Syndrome (NADS), here is Chicago. Finding this group, made all the difference. These parents were in the same boat, sharing similar experiences, struggles, and yes funny stories, that I could relate to. In addition to local support groups, there are many online groups for DS-ASD on Facebook.
During Autism Awareness Month, I would like to see the government and media focus on more educational, behavioral supports and other treatment options. What is going to happen to our kids when they age out of the school system? There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population. In addition, I’d like there to be an easier path to obtain funding through the government.
For the month of April, parents of a child with autism, or a dual diagnosis of DS-ASD, need understanding and support. Do you know a parent with a child who has autism? Consider lending someone a hand, so they can run an errand. We also need more compassion, and less judgment when we are out in public with our child. And many of us, could use a good night’s sleep.
You can also help by sharing information and stories, to raise awareness on social media. A better informed public will be more empathetic and supportive towards people with autism and a dual diagnosis of Down syndrome and autism.
That’s what is in my noggin this week. 🙂
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