Autism Does Not Have My Daughter

Every morning the child “potties.”  She removes her bottoms by herself.  The mom waits a few minutes; asks her if she is done, the child grunts.  The mom knows that means “Yes.”  The mom wipes her; the child pulls her bottoms up all by herself.

Then it is breakfast time.

She points to the things she wants to eat.  Sometimes she’ll point to a box of cereal with an apple or banana or oatmeal with an apple or banana.  After breakfast, the child plays.  She has a toy piano and plays surprisingly well. Then the mom starts to set up for a couple of hours of basic learning.  The child is homeschooled.

After her schoolwork is complete, the child goes on a lunch break.  When she is done eating, the mother and the child relax for a little.  The child still enjoys basic “normal” activities despite her differences compared to most “normal” kids.  Usually, after her lunch break, the mom puts on some music and they dance with one another.  The child loves to dance and jump around to loud music.

The day is almost over.  The mom starts on dinner.  The child eats.   Shortly after, it is bedtime.   The child potties again before bed; She is then tucked in by her mother.

Whew, pretty easy– at least that’s what her mom says.

This is a typical day in the life of twenty-five year old “stay at home” mom, Jasmine Carrasquillo and her autistic 8-year-old daughter, Mia Whi.

The Centers for Disease Control says autism affects 1 in 68 children.  As of late, it is the fastest-growing developmental disorder in the U.S.  In 2012, the estimate was 1 in 88 children, in just two years, autism has had a 30 percent increase.   Some argue that such autism increase is due to environmental factors like pollution or certain chemicals. The CDC, on the other hand, says more cases are being discovered because we’ve gotten much better at diagnosing it.  So it may not necessarily mean that more children are developing autism.  A new study published in the journal JAMA Pediatrics noted the primary cause of the increase of autism spectrum disorder is, in fact, due to changes in how the disease is diagnosed.

“This study is important because it shows a large part of the increase has nothing to do with the environment, but rather administrative decisions,” says study author Stefan Hansen of Aarhus University in Denmark.  Hansen also stated that there is still more research that needs to be done.  “There is still 40 percent of the increase which we cannot explain, and therefore we need to continue to look for factors which can explain this,” he said.

However, autism awareness has had an incredibly large increase over the past years, it [autism] still opened up a whole new world for Carrasquillo. She never really knew what autism was, or felt like to be affected by it— until it hit so close to home. Not to mention, she was a new mom at the time, so things were quite overwhelming.  In 2009, Carrasquillo had just started her new job as a Medical Assistant when she found out her two-year-old daughter, Mia, was diagnosed with Severe Autism—low functioning autism—a type of autism that makes it extremely difficult for one to communicate effectively.  Those who are diagnosed with severe autism, lack social skills and are most likely unable to communicate verbally.  In other words, they are non-verbal.

When Carrasquillo was employed, she said that it was extremely difficult for her to be away from Mia due to her diagnosis.  “It was heartbreaking leaving her with strangers because she is non-verbal. I love being home with her,” she said. Eventually, Carrasquillo had to stay home in order to keep a closer eye on Mia.  Nevertheless, she stated that she treats Mia just like any normal 8-year-old— “just more understanding when tasks are more difficult for her to do.”

However, Carrasquillo admitted that at times, connecting with Mia could be slightly frustrating.  For instance, she recalls the time when Mia damaged her furniture and smeared feces around her room.

She laughed uncontrollably when I confronted her about it.  Whereas, if my 3-year-old damages something, she’ll say ‘I’m sorry Mommy.’

Unfortunately, since Mia is non-verbal, she can’t say the word “mom,” and that is one of the hardest things Carrasquillo has to go through.  “I desperately wanted to hear my daughter call me mom,” she said.  Carrasquillo would spend several of hours researching about severe autism and ways to cure it—with the knowledge that there isn’t any medical detection or cure for autism (although, cord blood stem cells are currently being evaluated as a potential treatment for autism).  “I would go to every doctor appointment thinking they would have a new discovery that would magically take it away.  I would constantly ask God, ‘why me?’ All very depressing,” Carrasquillo said.

[Author’s note: Duke University is launching a $41 million stem-cell trail to explore “the use of umbilical cord blood cells to treat autism, stroke, cerebral palsy, and related brain disorders,” according to a press release. However, since the cause of autism varies, Paul Knoepfler from the University of California, Davis, wrote on his blog that the stem-cell trail could be really challenging, simply because “(1) that autism spectrum disorder is a diverse umbrella group of disorders and (2) that it remains unknown what the various causes might be.” He also indicated that, infusing stem cells would rarely make it into the brain.] 

Though, at first, it was extremely hard for Carrasquillo to accept that Mia was an autistic child, her two other children Soleigh, 3, and Juel who is 1, never once treated Mia in any peculiar way.  In fact, “they love to hug and kiss her,” Carrasquillo noted.  As for her, from a mother’s point of view, she couldn’t help but to notice the differences between Mia and the rest of her two children.

I remember Mia being their age and she wasn’t calling me Mom, or pointing, waving, pretending to talk on the phone, or looking me in the eye.

In fact, it was some of these developmental differences that pushed her to have Mia homeschooled.

Mia attended a great school that was especially for disabled children between the ages of 2-6 called Easter Seals in Philadelphia.  After turning 6, I was told she would have to enter a regular school class setting.  That meant that she would be in a class filled with normally developed children, in a regular school.  After visiting some, I was not at all comfortable with that.  I decided to keep her home. She also receives physical, occupational and speech therapy at home.

Furthermore, Psychology Professor, Keith Happaney, who teaches at Lehman College and focuses some of his research on autism says, autistic people have a social deficit, which is the prime reason why some cannot always connect with people in the ways that most other people do.  “Everyday interaction is difficult for them.  Perhaps, their minds are not sculpted for that,” he said.

He also mentioned that people with autism have been referred to as having mind blindness; they are seeing things behaviorally rather than mentally.  “They know what the world is like, but not how it is represented in somebody’s mind,” he said.  Those who are diagnosed with autism do not know how to read other people’s emotions, body language or even their facial expressions.  Perhaps that is why Mia would laugh uncontrollably whenever her mom would confront her about putting her feces all over the furniture.  She lacked emotional response, which in the end aroused Carrasquillo’s frustrations.

However, research indicates that not only do parents of children with autism experience greater stress than parents of children with learning disabilities, but also it is OK to experience a range of different emotions.  Carrasquillo’s frustrations were normal when dealing with an autistic child, there are no appropriate or inappropriate feelings.

According to “Autistic Spectrum Disorder Fact Sheets”, having an autistic child can be an overwhelming challenge, both physically and emotionally.  Often it would add anxiety on the person caring for the child.

For instance, a child with autism may not express their basic wants or needs thoroughly, because they do not know how too.  In Carrasquillo’s case, when Mia grunts, she knows that is an automatic “yes.”  But most of the time, parents are left playing a guessing game.  Is the child crying because he or she is hungry, thirsty, or perhaps sad?  All in which can get physically and emotionally draining, so both parties, the parent and the child, are left frustrated.

Carrasquillo, who participated in “Autism Speaks” walk in October 2014, said, “Patience, Understanding, and Unconditional Love,” are three main things to have when dealing with an autistic child.  In fact, the organization, Autism Speaks, which was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism, focuses on cures, prevention treatments, and research into what causes autism.  Carrasquillo stated that although her daughter, Mia, is unique, society treats her otherwise, which is why the organization [Autism Speaks] is very important.  It educates and increases awareness of autism spectrum disorders.

“Society is very uneducated on the different types of autism.  They believe if they’ve encountered one child with it, they know how all of them are,” says Carrasquillo.

According to Time, CDC announced on Jan. 2 that over the next four years, it will invest over $20 million to increase tracking of children with autism spectrum disorder, which will give the U.S. a better understanding of what exactly impacts the prevalence of autism here.

In the meantime, Carrasquillo is gradually accepting Mia’s fate in regards to her diagnosed with autism, which makes things a little bit more manageable.  “I make sure she’s fed, washed and happy everyday,” she said.

When asked what advice could she give to moms who are in the same situation as her, Carrasquillo responded, “Don’t make life harder than what is already is. Responsibly go with the flow.”

Nevertheless, having an autistic child is by no means easy, and Carrasquillo is a living testimony of that.  She does not let her frustrations or anxiety consume her.  She rises above it.

“The battle is accepting the hand you and your child were dealt.”  She continued, “I stopped filling my schedule with specialist appointments.  I stopped beating myself up for not being involved in every autism event in my city.  I realized that my daughter has autism, autism does not have my daughter.”

 

With Sherley Boursiquot–@sherleybee_