In light of Autism Awareness Month, I revised an article I wrote a couple of years ago, and want to share it with you now...
When my 15-year-old daughter
was born, I never considered the fact that she might be among the many
diagnosed with autism. At that time, I believe the numbers were 1 in 250 being
diagnosed, but I wasn’t too aware of what it all meant until my life was
personally immersed in it. I quickly learned that autism is a spectrum
disorder, which means the
symptoms and characteristics of it can appear in various combinations, ranging
from mild to severe. No two children are alike. I also learned the symptoms of
autism can improve with various therapies and treatments, which is very good to
know. Unfortunately, one thing I wish I hadn’t learned is that raising a child
with autism also includes being exposed to merciless comments made about you or
your child. The comments are not always intended to be hurtful, but they usually
come from a lack of understanding about the disorder. With this in mind, many
parents have learned to ignore the comments (even though they do hurt) and/or
have made efforts to educate those who will listen. That is my purpose for
writing this article – not to whine and complain about unfair treatment, but to
increase the awareness and familiarity of autism, and to help give others a
better understanding of those affected by it.
NOTE: Included in this article are actual comments
spoken from people who were misinformed about autism. These quotes were
specifically sent to me by other parents of autistic children from various online
support groups. (You would be amazed at how many comments I received, so
weeding them down to a few was difficult.) Permission was granted to publish the
comments; however, identifying names have been removed in order to protect the
privacy of each one involved.
Comments Regarding
Discipline
1. Tina says: After my son had a tantrum in
McDonald's, an elderly couple asked me if he was ok. I replied “He's fine, he
has autism and sometimes...” and in mid-sentence, they interrupted me and said,
"That's nothing a good swift kick in the butt wouldn't cure.”
2. Veronica had a very close relative tell her,
"He is not autistic, he is just taking advantage of you, can't you see
that? His problem is simple, he is just SPOILT, that's all.”
3. Lynn
says: My daughter was “acting up” one day because we were away from home and in
a different environment. She may have been hungry or tired, but just didn’t
know how to tell me. I was having a hard time getting her to stay calm when my aunt
(who was visiting from out of state) asked, “Would she listen better to her
grandpa?” implying that my daughter’s behavior was due to a discipline problem
and she needed a firmer hand to make her behave.
Autism spectrum disorders are
neurodevelopmental in nature, and it is difficult for affected children to
understand the environment around them. They have barriers in their brains that
make it difficult for them to adapt to their surroundings. This may include
(but is not limited to) sensory dysfunction, lack of social skills, lack of
communication skills and compulsive tendencies. As a child gets overwhelmed, he
may “act out” in various ways to help him cope, such as arm flapping, rocking,
screaming, crying, and/or being uncooperative. Many people confuse these
behaviors with a lack of discipline, which is not always the case, and should
never be automatically assumed.
Comments Regarding
Special Diets
1. Said to Laura - “Doesn't he starve?”
2. Said to Monica - "Maybe he won't talk
because you won't give him the food he wants."
3. One mom shared that her son's school felt she
was being abusive because her son was on a restrictive diet for autism. The
school said it is unhealthy to deny a child fast food and candy like other kids
get.
Many children who have been
diagnosed with autism or sensory processing disorders have dramatically
improved after being put on special diets, such as gluten-free and casein-free
(GFCF). Gluten is a protein found in wheat, oats, barley and rye. Casein is the
protein found in milk products. Other diets, such as the Feingold Diet, include
the removal of preservatives and artificial dyes. The limitations of these
special diets are apparently confusing to many misinformed people.
Comments Pertaining to
Language Delays
1. Monica says: When strangers say “Hi” to my
4-year-old autistic son, I often tell them he cannot talk. Once, I got the
comment, "Maybe he just doesn't have anything to say.” One lady actually
said, "What did you do to the poor child?"
2. Said to Debi - "She can't be autistic.
She's too smart."
3. Said to
Laura - “Well, what did you expect. You let him point to an object to get his
way - you should have made him talk.”
Contrary to what some
believe, the lack of speech in an autistic child does not mean the child is
without intelligence. Children with autism do learn, and many can be
successfully taught to function, when they are given appropriate therapies and
treatment. Simply put, autism produces barriers in the brain which does not
allow information to process correctly. A child with autism may actually
understand what you say, but the barriers hinder him from being able to respond
appropriately. However, many autistic children can develop functional language
and others can develop some type of communication skills, such as sign language
or use of pictures. Those who are mildly affected by the disorder may exhibit
only slight delays in language, but could have a greater lack in social skills.
Therefore, he or she may not be able to initiate or maintain a proper conversation.
Communication is often described as “talking at others” instead of with them.
For example, they may continue to talk about a favorite subject without
pausing, despite the attempts of others to interject comments.
Comments Regarding Odd
Behaviors
1. Laurel’s
son refused to eat meat of any kind due to oral-sensory issues. Someone said to
her, “Can't you just reason with him?"
2.
Curtis shared how
his son (5 years old at the time) would repeat things over and over. While at
the store, he would say Hi to the employees, using their name from their
nametags, then asked them continually, "What are you doing, (insert name)?
Most employees could figure out that he had some type of learning problem, but
one responded sternly, "I've answered you once; you should understand that
by now."
3.
Monica said: One time in the grocery store, my son was
flapping his arms. A man walked by and asked, "How long will he do that
until he realizes he cannot fly?"
According to the Centers for
Disease Control and Prevention, 1 in 68 school children in the United Stated,
have some form of autism. With the way autism has increased in numbers, I believe in the importance of making others aware of it. It is
now considered an “epidemic.” Chances are, if a family member does not have
autism, you will at least eventually run into someone who does. So, when that
happens, please remember there is probably a reason why this child is “acting
out” in some odd way. With sensory issues, compulsive tendencies, and lack of
communication skills, these children are doing the best they can with whatever
situation they are in. The parents, likewise, are doing the best they can to
keep their child calm, happy, and secure in his world. Instead of making
unnecessary comments, please be kind and courteous. A simple smile or a pat on
the arm can be more encouraging than you realize.
For more information about
autism, please check out these websites:
I have been interested in Irish traditions for quite awhile now; and I would really love to visit Ireland someday. I guess its partly because of my Irish roots. No, I haven't researched far enough back to know of anyone in my family line who actually came to America from Ireland, but my maiden name is Scottish-Irish. I'm hoping that someday I will be able to research farther back than I already have. In the meantime, I will be content to enjoy listening to Celtic music, looking at beautiful scenery online and in picture books, and reading about Irish traditions. 
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I also told 3 other friends, so they could be praying, but did not want to make it public to everyone else just yet.
