By Stephanie Costolo       Photos By Bob Thompson – Thompson Brand Images & Lauren Ali Photograph

It was a beautiful sunny Floridian day at the park when I met Madison and Makayla. Their sweet and quiet nature was immediately evident as they stood close to their mom, Susan, while I introduced myself. Their shy smiles are utterly endearing. I had my three kids at the park as well, and most of us headed straight for the swings. Madison and Makayla cautiously approached the swing set; their beautifully thick, curly blond hair was tied up in ponytails, blowing slightly in the wind. Madison seemed to easily slide onto a swing as Susan quietly and patiently helped Makayla try to get into her swing. What takes most children mere seconds to accomplish by hopping up, Makayla has to work hard at. She and her mom took their time, shifting positions while mom was giving pointers and helping to lift her onto the swing. After a few minutes of unsuccessful attempts, Makayla decided to explore the rest of the playground; first stop – check out the slide. She would come back around every ten minutes or so to try the swing again and again. Each time she and her mom would work together patiently and methodically, shifting positions and talking through the process. A lesson in patience and compassion for any lucky observer.

April is National Autism Awareness Month, and April 2nd marks the eighth annual World Autism Awareness Day. Perhaps you know someone who has a child on the autism spectrum or with Asperger’s syndrome, or perhaps you don’t. According to the CDC, about 1 in 68 children in the United States has been identified with autism spectrum disorder (ASD). That’s a 30% rise from estimates in 2008 and roughly 120% higher than the estimates for 2002 and 2000. Clearly this is an issue which warrants more attention. Susan Gulash, a Wesley Chapel resident, owns a graphic design company called Gulash Graphics and volunteers in the PTA.  She is a woman who has been committed to bringing attention to ASD for a number of years now. Susan and her husband, Brian, have been married for sixteen years, having known each other for twenty-four. They have two beautiful daughters; Madison is eleven and Makayla is eight, and both fall on the autism spectrum in similar yet vastly different ways.

It all started for Susan when her first daughter Madison was two and a half years old and began becoming socially withdrawn, even from close family members. At around four years old, Madison was enrolled in VPK when her teacher suggested that she be tested for Asperger’s. Susan recalls, “I said what the heck is Asperger’s? I’ve never heard of it.” The teacher explained what Asperger’s is to Susan and after having Madison tested, found she was on the spectrum. “Asperger’s syndrome is an autism spectrum disorder (ASD) considered to be on the ‘high functioning’ end of the spectrum. Affected children and adults have difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviors. Motor development may be delayed, leading to clumsiness or uncoordinated motor movements. Compared with those affected by other forms of ASD, however, those with Asperger’s syndrome do not have significant delays or difficulties in language or cognitive development. Some even demonstrate precocious vocabulary – often in a highly specialized field of interest” (autismspeaks.org). In 2013, the autism community was thrust into a contentious debate due to the Diagnostic and Statistical Manual of Mental Disorders officially eliminating the diagnoses of Asperger’s syndrome, pervasive development disorder, and childhood disintegrative disorder. What were once individual diagnoses are now incorporated into a single diagnosis: Autism Spectrum Disorder, in which an individual could be at the top or bottom; low or high functioning . . . the ‘spectrum’ as they say is very broad.

As a parent with little to no experience with special needs children, I asked Susan a number of questions in order to better understand the ASD world. Take a peek with me into the world of a mother with two children under the same diagnosis, yet manifesting in different ways:

Resident Magazine (RM): How old were your children when you received their diagnoses?

Susan Gulash (SG): Madison was four years old. Makayla was closer to six years old.

RM: How has your life changed since receiving the first diagnosis?

SG: It’s been great to be able to say, ‘Hey here’s a label. Now I can explain this to my family’. My family (at first) just thought that my kids weren’t listening to me, that they were running my life. The hardest thing with my family not understanding was that I began to feel that I wasn’t being a good mom.

(RM note: once her daughters received a diagnosis, the extended families were able to get educated on ASD and come to a greater understanding of behavioral issues.)

RM: How have you grown as a person, or what has your experience with autism taught you about yourself?

SG: To have patience. Patience! You have to have patience with these kids. The repetition of the same question over and over and over can drive anyone nuts. But I’ve learned to live with that, and a lot of things that would annoy other people just kind of go in one ear and out the other. It’s made me grow as an individual, grow my own voice, and be an advocate for my kids.

RM: What services in the Wesley Chapel area do you use and/or recommend?

SG: A lot of (the girls’) services are provided at the elementary school, but at USF there are two great organizations. One is called VSA Florida. They deal with adults and kids with all types of disabilities. They have an arts & music program which is outstanding. They have an animation class for autistic kids, so whether they’re Asperger’s or lower on the spectrum, they can go in there and learn how to animate. For more information on VSA Florida – the state organization on arts & disability, check out www.vsafl.org. CARD – the center for autism and related disabilities. If you’re a newbie to this community, they’re the best. They’ll be able to direct you to the different therapies physical, speech… you’ll need. For more information on CARD, check out www.card-usf.fmhi.usf.edu.

RM: From a mother of special needs kids to other mothers out there, what is your definition of a successful childhood?

SG: Find out what they like in their lives and help them succeed. I’ve learned with these kids; the earlier on you get them into what they like, the more they’ll blossom.

RM: If you could make a request of parents who don’t have special needs children on how they approach the special needs topic with their kids, what would that request be? How would you want me to discuss with my kids how to act or respond when they see behavior that is out of the norm or something they’re not familiar with?

SG: Tell them that’s the way (special needs children) deal with their worries or fears or excitements in life. That’s just their quirkiness. Explain that (non-special needs) kids have their own quirkiness too.

RM: Have your kids been bullied?

SG: Yes, when Madison was in third or fourth grade and she was doing the stimming with her hands. That’s why the therapies have really focused on teaching her to control that urge, even though it is just her way to deal with emotions. She’s been bullied as well as my younger one. We were at Wal-Mart last night standing in line for what seemed like forever. As I’m standing there, my oldest had cut her finger somehow, so I gave her one of the wipes I had and she was kind of panicking like, ‘Oh my god, is it going to stop bleeding mom?’ That’s another thing – they panic a lot. Finally it stopped bleeding. So then she took the wipe I had given her and she was stimming with it (waving it around quickly). As she was doing it, a girl passed by about the same age, and she just started laughing at her. (Madison) said, ‘Mommy, that girl was laughing at me. I’m just going to ignore it.’ But that’s one of the reasons why the therapies show her how to adapt. My younger one hums and grinds her teeth. Lately she’s been doing a lot of grinding because the curriculum they’re learning is a lot more advanced in the second grade than in the first, so she’s getting a little frustrated and that’s a way she shows her frustration.

Note: Rigid, repetitive movements often characterize “stimming” and/or vocal sounds. Although these behaviors may sometimes look odd, they are comforting to the individual who engages in them and help him/her cope with fear, nervousness, excitement, or boredom (www.mayinstitute.org). 

RM: Why would a parent want to get a diagnosis and ‘label’ their child, particularly in the case of a high-functioning autistic child?

SG: I’m asked a lot, ‘Why do I want my children labeled in school?’ It’s because they get physical therapy, occupational therapy, and speech too. And I just tell them simply: If I don’t get them therapies early in life then they cannot enjoy their lives as an adult in society and actually be what the ‘normal’ is. And what is ‘normal’, you know? They’re normal to me! If they were sitting there you would think that they’re completely normal. The way they’ve been brought up and the therapies they have been receiving have helped tremendously. Since they’ve been in the therapies, my oldest is now like a little mommy, taking care of her younger sister and making sure she has food, etc. Before she couldn’t express those feelings. The school has really catered to not just our kids, but also all the kids there. They’ve really figured out a way to help the autistic kids in general in order to meet the school’s goals and not make (the children) feel overwhelmed. There was a video a couple years ago where someone who has autism wanted to demonstrate what they go through every day, so they went to Wal-Mart and turned up the volume on their speaker and it’s just overwhelming. And that’s what these kids go through. We have to bring earplugs to Disney because some of the rides are louder than others.

RM: Is noise level a symptom of ASD?

SG: Oh my goodness, yes. It’s sound, light, or texture. Madison has a big issue with sound so if we’re at the movie theater we have to bring earplugs. And even when we went to Disney world, it was quite difficult for her to go in the haunted mansion.

RM: How does a child get diagnosed?

SG: It’s an assortment of tests. You can get it through the school system for free, but the hardest thing is getting to the point where you can say, ‘I think my child has this.’ And then it took almost a year for my daughter to get the tests done. You just have to be an advocate because if you don’t, these kids get lost and a lot of times they get frustrated and end up dropping out of school. A lot of these kids are very smart, especially in the areas they are interested in. Albert Einstein would probably be diagnosed with ASD if he were born today.

RM: If you could have your own billboard and have it say anything at all and put it anywhere, what would it say and where would it be?

SG: I would put it by the new mall. ‘Autism is not curable but treatable. We may look different on the outside sometimes, but on the inside we are just like you’.

My discussion with Susan got me thinking about my own children and how easy it could be to miss signs of ASD, particularly with high-functioning autism. Here are some additional facts and symptoms of ASD from www.autismspeaks.org:

While autism is usually a life-long condition, all children and adults benefit from interventions or therapies that can reduce symptoms and increase skills and abilities. Although it is best to begin intervention as soon as possible, the benefits of therapy can continue throughout life.

Social Challenges 

By 8 to 10 months of age, many infants who go on to develop autism are showing some symptoms such as failure to respond to their names, reduced interest in people and delayed babbling. By toddlerhood, many children with autism have difficulty playing social games, don’t imitate the actions of others and prefer to play alone. They may fail to seek comfort or respond to parents’ displays of anger or affection in typical ways.

Subtle social cues such as a smile, wave or grimace may convey little meaning. To a person who misses these social cues, a statement like “Come here!” may mean the same thing, regardless of whether the speaker is smiling and extending her arms for a hug, or frowning and planting her fists on her hips.

Many persons with autism have difficulty seeing things from another person’s perspective.

It is common, but not universal, for those with autism to have difficulty regulating emotions. This can take the form of seemingly “immature” behavior such as crying or having outbursts in inappropriate situations. It can also lead to disruptive and physically aggressive behavior. The tendency to “lose control” may be particularly pronounced in unfamiliar, overwhelming, or frustrating situations. Frustration can also result in self-injurious behaviors such as head banging, hair pulling or self-biting.

Communication Difficulties

Young children with autism tend to be delayed in babbling, speaking, and learning to use gestures. Some infants who later develop autism coo and babble during the first few months of life before losing these communicative behaviors. Others experience significant language delays and don’t begin to speak until much later.

Some have difficulty combining words into meaningful sentences.

Some mildly affected children exhibit only slight delays in language or even develop precocious language and unusually large vocabularies – yet have difficulty sustaining a conversation. Some children and adults with autism tend to carry on monologues on a favorite subject, giving others little chance to comment. Some children with ASD with superior language skills tend to speak like little professors, failing to pick up on the “kid-speak” that’s common among their peers.

Conversely, someone affected by autism may not exhibit typical body language. Facial expressions, movements and gestures may not match what they are saying. Their tone of voice may fail to reflect their feelings.

Repetitive Behaviors

Common repetitive behaviors include hand-flapping, rocking, jumping and twirling, arranging and rearranging objects, and repeating sounds, words, or phrases.

Some spend hours lining up toys in a specific way instead of using them for pretend play. Similarly, some adults are preoccupied with having household or other objects in a fixed order or place. It can prove extremely upsetting if someone or something disrupts the order.

Repetitive behaviors can take the form of intense preoccupations, or obsessions. Older children and adults with autism may develop tremendous interest in numbers, symbols, dates or science topics.

Associated Medical Conditions

Genetic Disorders

Gastrointestinal (GI) Disorders

Seizure Disorders

Sleep Dysfunction

Sensory Processing Problems

Some of those with autism are hypersensitive to sounds or touch, a condition also known as sensory defensiveness. Others are under-responsive, or hyposensitive.

Pica

Pica is a tendency to eat things that are not food.

Madison and Makayla are sweet natured, smart, and fun girls. Madison loves animals and wants to be a veterinarian when she grows up. The human body, especially the heart, fascinates Makayla; she wants to be a doctor. I have every confidence that both girls can and will accomplish their dreams, no matter what challenges they may face. By the end of our park play date, Makayla did make it on the swing! Success! She enjoyed a few minutes of swinging before choosing to get down, saying that the swing was uncomfortable. I totally get it, Makayla – the swings hurt my bottom too!

Sources: 

Lutz, Amy S.F. “You Do Not Have Asperger’s, and Neither Does Anybody Else.” www.slate.com. N.p., n.d. Web. 17 Mar. 2016.

“Asperger Syndrome.” www.autismspeaks.org. N.p., n.d. Web. 17 Mar. 2016.

“10 Things to Know About New Autism Data.” www.cdc.gov. Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 31 Mar. 2014. Web. 17 Mar. 2016.

Harris, Teka J., M.A., BCBA. “Reducing Self-stimulatory Behaviors in Individuals with Autism” www.mayinstitute.org. N.p., n.d. Web. 17 Mar. 2016.

www.vsafl.org