Autism Spectrum Disorder: When the World Doesn’t Understand
By Darlene Oakley
I often write articles on what having a particular medical condition may be like and ways to cope with it or prevent flare ups. But very few of my articles tell the other side of the story - what it's like to be a parent, caregiver, guardian of someone with a particular disorder, condition, or illness. As a parent of an ASD child, I thought I'd change my usual article-writing topics this time.
What it's Like Being an ASD Parent
Parents of children with an autism spectrum disorder face a slightly different experience than parents of children who have more obvious disabilities (i.e., being in a wheelchair) because many children on the autism spectrum appear "normal". And because the child appears normal, people don't know that he sees and processes the world completely differently.
Many parents have experienced the glares from other grocery shoppers or restaurant patrons when a child has a temper tantrum. You know, the "why don't you discipline your child better" type of glare.
They don't know it's not a discipline issue. They don't know that this is your child's only way of dealing with the stress of strangers around, bright lights, the din of people talking and towering shelves with a dizzying array of colors. Again, to many people, children on the autism spectrum appear "normal" - but inside, they're very different.
What is Autism Spectrum Disorder?
Autism spectrum disorder (ASD) is an umbrella term used to describe a variety of disabilities, including autism, Aspergers syndrome, and other cognitive disorders, ranging from very mild to extreme. (4) For a child with ASD, a "meltdown" is simply because his world is too overwhelming for him to process.
It has nothing to do with anger or being belligerent and not getting his way. It's about everything in the world around him - things that seem ordinary to us, but are major to him. In general, ASD kids have to try so much harder to do the ordinary things other children and parents take for granted - personal hygiene, talking, identifying with people, understanding body language, reading, writing and personal organization.
Dealing with Others
Remember that many of those who comment and stare simply don't know what autism looks like and they just assume that your child is being disobedient or defiant. You have several choices when someone comments or glares at you:
1) You can yell at them and tell them that they know nothing about raising an ASD child and should just mind their own business. Really tempting sometimes.
2) Ignore them. Sometimes, this is best if the person commenting is a family member or friend or acquaintance who knows about the disability and yet chooses to ignore what it means.
3) Turn the moment into an educational moment by calmly telling them about your child's disorder. Don't apologize for your child's behavior. Just help the other person understand - and probably the other people eavesdropping - what life is like for you and Joey.
4) Connect with other parents of children with learning disabilities and cognitive and physical difficulties. Surround yourself with people who are going through the same thing. They can support you and encourage you when you become discouraged, or when ignorant comments whittle their way into your mind and have you second-guessing yourself.
If you're an ASD parent, please take the time to read Maria Lin's Huffington Post article under Sources, below.
Sources:
1) What Do Parents of Children with Learning Disabilities, ADHD, and Related Disorders Deal With. Smith, Sally. Learning Disabilities Association of America. Web. Nov 13, 2012.
http://www.ldaamerica.us/aboutld/parents/help/parents.asp#top
2) Coping: Parents of Children with Learning Disabilities. Horowitz, Sheldon. National Center for Learning Disabilities. Web. Nov 13, 2012.
http://www.ncld.org/in-the-home/parenting-issues/coping-with-ld/coping-parents-of-children-with-learning-disabilities
3) 7 Things you Don't Know About A Special Needs Parent. Lin, Maria. Huffingtonpost. Web. Nov 13, 2012.
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
4) Autism Spectrum Disorder. National Institute of Mental Health. Web. Nov 13, 2012.
http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/what-is-autism-spectrum-disorder-asd.shtml
Reviewed November 13, 2012
by Michele Blacksberg RN
Edited by Jody Smith
