My Autism Story: Carole's 14-Year-Old Daughter Is On The Spectrum

Photo provided by The Samuel Field YM-YWHA
14 year-old-daughter, Jackie, has autism. They live in Queens, New York, with her husband Mike, and have found their greatest resource to be their local Y. She says, "The most challenging part of dealing with Jackie's autism is uncertainty" and that she continuously deals with "unstable day-to-day situations, balancing medications, and sometimes frightful behaviors."

Carole shares her story with us below.



How old was your daughter when you first suspected she might have autism? What were those initial signs?

My daughter was a little over a year old when I noticed some odd behaviors. She loved to stare at ceiling fans and loved holding spoons and straws in her hands. She didn't play with typical kids toys. She'd eat for two hours and sleep for five minutes, then restart.

In those first moments when you found out your daughter's diagnosis, how did you react? And how did that reaction change over time?

In 1997, when my daughter was diagnosed with autism, statistics showed only 1 in 10,000 children were born with the disorder. That's way less than today. My child's pediatrician kept assuring me she was okay. I don't think too many doctors were aware of the symptoms back then.

I don't think I was ever in denial, as so many parents are. I knew the right diagnosis would give her the services she needed. 

What's her exact diagnosis? And what does that mean in laymen terms?

Jackie would be classified as Autistic; Mentally Retarded, and labeled ADHD. There are degrees of severity to each diagnosis. Physically, Jackie is healthy and beautiful. I consider myself lucky she's somewhat verbal and craves interaction with others. 

What are three things you wish someone would've told you about autism that you had to learn on your own?

  • Trust your instincts, step back, think, and breathe. Seek help immediately.
  • Don't be afraid to ask for what you need -- nobody can read your mind.
  • Don't listen to people talk about failures and shortcomings. Even small accomplishments are triumphs.

What or who has been your greatest resource for information and support during this time?

Many agencies and support groups have helped me. The greatest help and resource for information was the CAP Connects division of the Samuel Field Y.  My daughter loves to go to a place where she's accepted, comfortable, and safe. The Y offers many programs she participates in, like after school socialization, holiday respite, Basketball Buddies, and Soccer Stars. The Y also has trips such as horseback riding for special needs children and pool parties on days that I would've had no place to take her. She's made friends and looks forward to spending time there. 

What's been the most challenging part of dealing with a child with autism?

The most challenging part of dealing with Jackie's autism is uncertainty. I deal with unstable day-to-day situations, balancing medication, and sometimes frightful behaviors. I'm as uncertain about the present as I am about her future. Often I feel she has no future.

Tell us something that makes your child special or unique.

Jackie's special talent is her empathy for others. She can sense people's emotions and be reactive to them as opposed to being indifferent, as so many autistic children are thought to be. 

Finally, the debate around the cause(s) of autism is very heated right now. What do you think causes autism?

The cause of autism could be environmental, could be vaccines, or could be genetic. All I know is something stole my child's brain, and I want to know why and -- most important -- how to fix it.

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