Autism is a developmental disability that affects an estimated 1 in 36 children in the United States today. Many people refer to those with autism as being on the “spectrum.”
You may have seen or met someone who has autism, but do you know what autism actually is?
What is Autism?
Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain.
According to the Centers for Disease Control (CDC), autism begins before the age of 3 years and can last throughout an individual’s life, although symptoms may improve over time.
Having autism or being diagnosed with autism spectrum disorder (ASD), is often associated with a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.
Individuals who have been diagnosed with autism have a distinct set of strengths and challenges, which impacts the way they learn, think, problem-solve, and deal with certain situations. Autism can be extremely challenging for those who have been diagnosed with it, and some individuals even require more substantial support in their daily lives, although that is not always the case. In some instances, individuals who are on the “spectrum” navigate their entire lives independently.
Who is Affected by Autism?
The CDC states that some children show ASD symptoms within the first 12 months of life, whereas in others, symptoms may not show up until 24 months of age or later.
The CDC also states that some children with ASD gain new skills and meet developmental milestones until around 18 to 24 months of age, and then they stop gaining new skills or lose the skills they once had.
According to the CDC, as children with ASD become adolescents and young adults, they may have difficulties developing and maintaining friendships, communicating with peers and adults, or understanding what behaviors are expected in school or on the job.
They may come to the attention of healthcare providers because they also have conditions such as anxiety, depression, or attention-deficit/hyperactivity disorder, which occur more often in people with ASD than in people without ASD.
National Autism Awareness Month
April is National Autism Awareness Month, and it is a time to raise awareness about autism across the country, in conjunction with World Autism Awareness Day (WAAD), which was adopted by the United Nations in 2007, and celebrated every April, to shine the light on autism as a growing global health crisis that needs to be addressed.
Although many people go about their day-to-day lives as if nothing affects them, there are many people who have not been on the “spectrum” themselves but have had to navigate the challenging and delicate responsibility of raising a child who was diagnosed with ASD.
Finding out Your Child Has Autism
Lynn Clouser is a native Houstonian, who was raised in Missouri City, TX. She currently serves as the At-Large #2 Councilmember for the City of Missouri City.
Clouser has had to juggle the responsibilities of managing a career, being a public servant, and raising two children—Marshall (18) and Lauryn (11). Marshall has been diagnosed with ASD.
After her son experienced delayed milestones, like being late to start walking and talking compared to his peers, that prompted Clouser to urge his pediatrician to refer him for further testing with Texas Children’s Hospital-Meyer Center for Autism.
“After months of testing, the child psychiatrist gave me and Marshall’s father the official diagnosis,” said Clouser. “I was already preparing myself for the news and had already enrolled him (Marshall) in speech and occupational therapy, but nothing could prepare me to actually receive the news.”
Clouser recalls vividly falling to her knees and crying in the doctor’s office.
“In that moment, I felt alone on an island,” said Clouser. “The things I remember the child psychiatrist saying were: “It’s not a death sentence. He will need speech and occupational therapy for the best outcomes.” This statement stood out to me, and it is what I share with families that I assist. The doctor stated that she has many families that are in denial, trying various approaches, and some do nothing, believing it will go away.”
Clouser states that the doctor’s telling her that: “Knowing something is wrong with your child and choosing to do nothing is like a form of child neglect” left her empowered to be her son’s voice. She has not stopped since.
Motivated to be an Advocate
Clouser states that the first parent who helped her was a mother who was friends with her sister. The mother had already been through what Clouser had been through, and her son was a few years older than Marshall at the time.
“I didn’t know of anyone who had received the autism diagnosis, or back then it was PDD-NOS (Pervasive Development Disorder Not Otherwise Specified),” said Clouser. “My sister connected me to her friend and when we spoke I felt like someone else understood what I was going through, and she truly helped reassure me. She was a wealth of information, recommending valuable resources that worked well for her son and the perfect autism school. I enrolled my son at that school—The Westview School—which was one of the best decisions I could have ever made for him. They emphasized that early intervention was crucial.”
But one thing that Clouser states she heard from the mother that she found interesting was when she told her: “We don’t talk about my son’s diagnosis in the community. We are a part of many organizations and it’s just something we don’t talk about in public. We just tell people that my son goes to a private school in Katy, and we leave it at that.”
Clouser felt as though she needed to hide the reality of her son’s diagnosis from the world after speaking with that mother, who happened to be the first parent she encountered on her unpredictable journey.
“I walked away from our conversation feeling as though this diagnosis was something I, in fact, needed to hide,” said Clouser. “Fast forward, and once my son started to progress and thrive in this new autism school—in speech and occupational therapy and social skills classes—I knew this was something I couldn’t hide. I felt I needed to let everyone know about his progress, so I could open the door to the same success for other families. Discussing the diagnosis is a personal choice, but for me and my son, his progress confirmed I implemented the right interventions for him at the right time to set him up for success.”
Biggest Challenges on the Autism Journey
Clouser states that there are several challenges on the autism journey, which include:
Financial—Autism is expensive. It’s said that it costs $60,000 a year for a child on the spectrum. Raising her son as a single mom was a challenge financially trying to meet his needs with private school, co-pays for speech and occupational visits, and the like. It was a challenge, but she discovered organizations like Hope For Three early on, who helped them fill in the gap.
Deciding to medicate—Making the decision to put her son on medication for ADHD was a huge challenge. No parent wants their child on medication, but after consulting with his developmental pediatrician and child psychiatrist, they were able to find the right one for him with the least amount of side effects to help him stay engaged during the school day and to get the most of his daily instruction. Finding the right prescription therapy was a daunting journey but ultimately, they found the one that was right for him. Insert lots of patience here!
Puberty—No one prepared her for this phase of the journey. Children on the spectrum often hit puberty earlier than other children so it’s best to start having these discussions and prepare for this season of the child’s life before arriving at that stage. Mental and physical tolls, especially at the beginning and during the teen years, can be a challenge.
Best Advice for Parents with a Child on the “Spectrum”
Clouser encourages everyone who has a child on the “spectrum” to do the following:
- Find a great support group, and/or families who have been on the journey, to stay in the know about resources.
- Find a great developmental pediatrician and child psychiatrist early on in the journey as your child’s core care team.
- Help your child find their gift and talent. Do they like fashion? Help them start their own tie company. Do they like pizza? Maybe they can find work at your local pizza restaurant. Are they great artists? Help them sell their art at local arts festivals or make greeting cards and sell them. Get in tune to their affinities and turn those talents into something positive and lucrative for them. Do they like to bake? See where I’m going? We must help them pave their way and set them up for success.
- If your intuition is telling you something is wrong, please have your child screened and tested by a developmental pediatrician or pediatric neurologist.
- Know that autism is not a death sentence, and yes, your child will be able to do many of the things neurotypical children will, but it will just look different. Be okay with that.
- Find ways to regularly give to yourself. It’s something we all preach, whether you have a child with a disability or not. But you will find yourself drowning mentally and physically if you don’t. Take your breaks, vacations, staycations, so you’re not always pouring from an empty cup.
- Medication is not a bad thing if recommended by the right provider. Many children on the “spectrum” will have other diagnosis like ADHA, OCD, anxiety, etc., and will need the help of medicinal intervention to function at their best.
- The autism diagnosis can be very stressful for the siblings in the home that are not on the spectrum. Stay closely tuned into them and regularly offer support to them in various ways, including being intentional about ensuring they have their own fun time away from the home environment. Offer to provide them with counseling, and/or schedule a meeting with their school counselor about your home situation, opening the door for your child to be able to go see their counselor at school when they feel they need to speak to someone to help them cope with challenges they may not feel comfortable discussing with parents.
- Hang in there! They get better as they get older.
Autism Advocacy in Action
Clouser has been on a tireless mission to help others on their autism journey.
Clouser was recently named Director of Marketing and Community Engagement for Apara Autism Centers, where they provide ABA (Applied Behavioral Therapy) for children ages 18 months and up at their centers and in-home programs in Houston, Dallas, and San Antonio.
Approximately 6 years ago, Clouser was appointed to the Board of Directors for Hope For Three—a non-profit organization based in Fort Bend County that helps families and children living with autism with resources and financial support. Additionally, she started a support group for caregivers in Fort Bend County, and beyond, called Autism Caregivers Around the Bend, with her friend and Alpha Kappa Alpha sorority sister Hope Montgomery, who is mother to identical triplet girls who have been diagnosed with ASD. Clouser also serves as a guest speaker on various podcasts, children’s school programs, panels, and at fundraising events to raise awareness and offer words of encouragement and wisdom on parenting a child with autism.
Clouser is happy to report that her son is thriving on the “spectrum”, while playing on the school’s special needs basketball team, soccer team, working a paid job, finding his love for fashion, and now looking at colleges.
Clouser believes that the biggest misconceptions that people have regarding autism are that:
- Parents should feel embarrassed or not disclose their child’s diagnosis.
- Individuals on the spectrum can’t and won’t be able to work or go to college.
- Parents did something wrong, that’s why their child was diagnosed with autism.
“Although I was never in denial, my son’s father was for many years,” said Clouser. “Oftentimes, denial from one or even both parents can delay the early intervention that is recommended for the best outcomes for the child. Denial is a phase of the grief process, but you must not remain there. I always go back to the words that our child psychiatrist told us: “Knowing something is wrong with your child and not doing something about is like a form of child neglect.” Early intervention is crucial and necessary. Allow yourself to grieve, but don’t stay stuck there.”
Autism Resources Available
Relative to resources, Clouser wants parents and caregivers to know about the following resources:
- Hope for Three: Hopeforthree.org
- Know Autism: KnowAutism.org
- Apara Autism Centers: AparaAutism.com
- Autism Speaks: AutismSpeaks.org
- Stacy Badon: Autism4home.com
- The Perfect Connection: PerfectConnection.org
- Various Support Groups on Facebook: Autism Caregivers Around the Bend, Autism Moms of Houston, Black Autism Moms of H-Town, Autism Dads Social Club, and Autism Moms are Beautiful.