April is known to be “Autism Awareness Month,” but according to Disability Scoop, advocates are pushing to change this reference to “Autism Acceptance Month.” Moms usually just want healthy babies who later develop to be healthy and happy children and adults. But what if you unexpectedly find out your child has autism? How would you react?
Reacting to the Diagnosis
Evelyn* was initially confused and in denial for a couple years. Her son (now age 6) had delayed speech issues at 18 months old. When she and her husband expressed concern, their pediatrician referred them to Tri-Counties Regional Center, the state-run, early intervention provide. They were then directed to North LA County Regional Center because of her home address. B* received speech therapy and child development therapy until he was almost 3 years old. At that point, the Center prepared him to transition to the school district, who performs their own evaluation to decide if a child still needs particular services. Right before B turned 3, he received the unofficial diagnosis from the district psychologist that he had signs of autism.
Evelyn describes it as “a confusing time because I didn’t understand what autism was, let alone what I was supposed to do to help [B] after the diagnosis. There was an alphabet soup of different therapies, centers, and treatments all claiming to be effective. I did not understand how to proceed.”
Dealing with a More Severe Situation
Another local mom named Jennifer* felt sad and disappointed when her son L* (now age 9) was diagnosed with autism but was not surprised by it. By the time L was a year-and-a-half-old, she noticed he was having developmental delays, especially in terms of speech. After being initially assessed, right before he turned 2, he was diagnosed with Global Developmental Delay and qualified for early intervention services. Within a year, the Tri-Counties Regional Center referred L for an evaluation to determine his eligibility for continued services. A psychological evaluation diagnosed him with autism a couple months before he turned 3. His mom shares, “Oddly, shortly after his diagnosis, he suffered a traumatic brain injury from a fall, which only exacerbated his symptoms. As you could imagine, this event was much more traumatic than the autism diagnosis.”
Pursuing Treatment Options
Both moms who were interviewed mentioned pursuing Applied Behavioral Analysis (ABA) therapy. According to Evelyn, who is currently studying this field to receive a master’s degree, ABA therapy is the main treatment that has been shown by scientific evidence to make a significant difference.
Jennifer also sought ABA therapy but specifically mentioned the Star of CA, whose services were covered by their health insurance. Additionally, L has also been in occupational therapy and speech therapy since the time of his diagnosis. On top of all that, L’s parents have researched biomedical and dietary interventions and began giving supplements to try to optimize his mood and behavior. They brought L to the Amen Clinic for a SPECT brain scan and for further guidance on supplements.
“During the COVID-19 pandemic, L’s behaviors were becoming unmanageable, and so for the first time, we are trying a medication (Clonidine) to help calm L,” his mom said. “We found a neurologist at Cortica, a new center for the treatment of autism. We are currently receiving guidance through the neurologist at Cortica on how to adjust the supplements and medication.”
Biggest Challenges for Moms
Evelyn remarked, “The biggest challenge has been sorting out all the different treatments, including fad ones, and learning what actually has evidence to back it and what doesn’t.” It can also be frustrating because a lot of organizations providing helpful services often have waitlists. “There is high demand and not enough providers,” said Evelyn.
She also initially worried about telling other people about her son having autism, fearing that her relationships could potentially be jeopardized. “Would they be weirded out by B’s diagnosis?” Evelyn wondered. “Would they avoid me? Would they stop calling me for playdates? Would our entire family have to face the same social isolation that is common for individuals with autism?”
With all these fears running through her head, she kept his diagnosis hidden from most people for 2 years. But now she is starting to feel comfortable opening up to more people. “I have found that most people have been very supportive, and the diagnosis has, so far, not negatively affected our friendships,” said Evelyn.
Jennifer responded, “It’s a toss-up between deciphering L’s tantrums and dealing with messy bowel movements. Because L is non-verbal, his tantrums often have an unknown antecedent, as he is unable to explain what is bothering him. Also, potty training was attempted several times and is not yet complete, even at 9 years of age.”
Support From the Community
According to Evelyn, parents of children with autism have increased stress and are also at a higher risk for depression. She shared, “It is said that parents who have their child diagnosed with autism often go through the same 5 stages of grief depicted by Elisabeth Kübler-Ross, M.D. (denial, anger, bargaining, depression, and acceptance).” Mental health support is critical for families affected by autism.
While Evelyn’s friends tried to support her, sometimes it wasn’t helpful. Some would offer to connect her with other friends who could share their knowledge of resources. “Honestly, I was just devastated and completely overwhelmed at the thought of having to learn about ‘many resources,’” Evelyn said. “Not sure I was ready to soak up all the info yet.”
Additionally, Evelyn found it was not as helpful as she thought to confide in another parent of an autistic child and hear his/her story. Each situation can be very different. What works for one family may not work for another family. Evelyn said, “I think I really needed counseling support first and then someone to carefully explain what everything is, as well as where to find it, and also walk with me through the whole process. I wasn’t ready to hear everything at once.”
Evelyn also wishes she could’ve gotten her son B diagnosed sooner. Research shows that the younger you start therapy, the better the outcome is. “I might’ve lost precious time because I was in denial and also did not know what I was doing,” Evelyn said. “I wish there was a person to tell you what to do at each stage.”
Additionally, she reveals, “It also didn’t help that close friends and family tried to comfort me by telling me that there was nothing wrong with B. ‘He seemed fine,’ they would say. ‘He’s just behind on his milestone, but he will catch up.’” While she acknowledges that they were just trying to make her feel better, she regrets that their words probably helped perpetuate her denial that her son had a problem and needed help.
“Pediatricians actually don’t seem to know a lot about autism,” Evelyn said. “Unfortunately, they are usually the first people the parents seek guidance from, so they need to be better educated about this.”
Finding Support in Different Places
Both Evelyn and Jennifer found solace through Calvary Community Church in Westlake Village. Jennifer feels very well supported by her community, saying, “The churches I attend are very compassionate and empathetic about L’s condition. Calvary Community Church, in particular, not only welcomes but celebrates individuals with special needs. They make every effort to support the individuals and families with special needs.”
“I’ve been learning to seek out and to appreciate the resources and supports offered from family, church, friends, and, most importantly, from God,” Jennifer said. “As I have to come to terms with the daily reality of L’s challenges, I am all the more grateful for any support that empowers me to stand strong and to thus have time, energy, and resources to pass along those blessings to others.”
Common Misconceptions about Autism
When seeing someone who has a difficult time communicating or socially interacting, one may make the mistake of assuming that people on the autism spectrum have low intelligence. But Jennifer wants to dispel this notion. “These individuals possess varying degrees of multiple intelligence that often gets dismissed because of the difficulties in expressive communication,” she said.
According to Evelyn, despite common features of autism, each case is different and can also develop differently. When you hear the phrase “autism as a spectrum,” don’t assume that autism is just classified on a mild-to-severe gradient. Also, just because an person is capable of talking a lot, don’t assume that he/she is truly understanding and processing what he/she is hearing. And an autistic person may have difficulty responding to you verbally, but he/she may be perfectly comprehending you. It does not mean he/she is not hearing you or does not want to connect with you.
Did you know that April 2 is World Autism Awareness Day (hopefully soon-to-be-called World Autism Acceptance Day)? Landmarks, buildings, and homes around the world will light up blue. Wear something blue on Friday, April 2, to show your support for people with autism.
*Names have been changed to protect the privacy of the moms who had the courage to share their stories, as well as their children. Ventura County Mom Collective cares deeply about our community and wants to provide resources to help. This installment highlights local resources. VCMC is thankful and honored to share the brave stories of families in our community.
Steps for early intervention and beyond (info provided by Evelyn)
- Your pediatrician can refer you to a Regional Center that provides specialized services for people with developmental disabilities. You can also contact them yourself and sign up for their Early Intervention Program if your child is between 0 to 3 years of age. Under part C of the Individuals with Disabilities Education Act (IDEA), your child is entitled to early intervention services at no cost to you. These services are designed to help your child improve and/or overcome many of the challenges brought on by autism or other developmental delays/disabilities. Examples of early intervention services include, but are not limited to, assistive technology devices, physical therapy, speech therapy, occupational therapy, and special education.
- If your child is 3 years old or older, a licensed psychologist from a Regional Center can officially diagnose him/her. This opens the door to many services and benefits that last through adulthood.
- When your child reaches age 3, he/she transitions from Early Intervention to public preschool special education, and the school district takes charge of providing the special needs services he/she was receiving in the Early Intervention program. The local school district will perform an evaluation and put together something called an Individualized Education Plan (IEP). They will provide therapy services during school for your child.
Medicaid (Medi-Cal) Waiver (aka. CA HCBS Waiver for Californians with Developmental Disabilities)
Early Intervention Resources:
*Quick Note: Many therapy centers offer multiple therapies in one center (i.e. ABA, speech, occupational therapy). It may be convenient to select a center that provides all of the therapies your child needs in one place.
Applied Behavior Analysis (ABA) Therapy
Star of CA (Ventura, Thousand Oaks)
Behavior Frontiers (Oxnard, Thousand Oaks)
Alternative Behavior Strategies (Camarillo)
Addison Behavioral Resources (Camarillo)
ABA Pathways (Newbury Park)
Autism Center for Treatment (Thousand Oaks)
Center for Autism and Related Disorders (Thousand Oaks)
Kids Connections Developmental Therapy Center (Simi Valley)
ABA Network, Inc. (Westlake Village)
Cortica (Westlake Village)
FirstSteps for Kids, Inc. (Calabasas)
Holding Hands, Inc. (Calabasas)
Children’s Developmental Milestones (Woodland Hills, serving the greater LA area)
Autism Parenting Magazine – Benefits of ABA Therapy for Autism
Physical / Occupational / Speech Therapy
Two Tree Kids Pediatric Therapy (Ventura, Oxnard, Santa Paula)
SLPTELE (Oxnard, Ventura)
A1 Speech Therapy, Inc. (Camarillo)
Children’s Therapy Center (Camarillo)
Speech Improvement Center (Simi Valley)
Tri-Valley Speech & Language (Simi Valley)
Fox Therapy Services (Westlake Village)
Kids S.P.O.T. Therapy (Westlake Village)
Support for Families of Autistic Children
Channel Islands Social Services (Camarillo)
Right Choice In-home Care (Canoga Park)