The Importance of Autism Advocacy
Autism Acceptance Month not only acts as a reminder to celebrate the differences within our communities, but also works to highlight both the resources and struggles those with autism face.
Despite one in 36 children receiving an autism diagnosis, there’s much about the disorder that is shrouded in myths, conspiracies and stereotypes. Autism Acceptance Month provides an annual space to highlight the importance of official diagnoses, to demystify the stigmas, and to encourage awareness and acceptance of those with autism.
“As discussions of autism signs have become more mainstream, stigmas disappear,” says Ellen Fittro, chief clinical officer at InBloom Autism Services. “At InBloom, our caring and professional clinicians recognize how amazing and unique each and every child is, and celebrate each child’s strengths and differences.”
It all starts with a diagnosis.
An autism diagnosis can be life-changing, although it may be challenging to get. Misconceptions surrounding what it means to have autism and the causes of it can have detrimental impacts on the ability to procure an accurate diagnosis.
“There are many misconceptions about autism and that’s what makes Autism Acceptance Month so important. Some common myths or misguided beliefs are that autism is caused by vaccines, is solely a childhood condition, that there’s one identifying behavioral signifier and that only boys have autism,” says Benito Aragon, vice president of marketing, communications and business development of Quest Inc. “Each of these misconceptions can lead to stigma, so public education is so important.”
Rising trends on social media encourage self-diagnoses based on a set of behaviors associated with those on the autism spectrum, although these behaviors are oftentimes not official diagnostic characteristics. Things like obsessing over a singular song or tapping your foot when impatient have now become the basis of self-diagnosis, leading to an overcrowding of resources by those who don’t need them, the misdiagnosis or under-diagnosis of other mental, attention or neurodevelopmental disorders, and a fundamental misunderstanding of what it means to be on the autism spectrum.
Self-diagnosis is not the only large hurdle many will face when handling an autism diagnosis. It can be harder for females to receive a diagnosis, as they often find it easier to mask their symptoms.
“The female brain is quite different from the male brain in that there is a lot of intuitiveness. A female that’s not on the more [severe or typical side of the] autism spectrum can usually figure [social interactions] out, but they’re having to do it in a more intellectual way rather than a natural one. When they can’t pick up on an interaction, they’ll often act like they do, which is something males don’t do as often. We don’t know exactly why,” says Dr. Krista Marchman, founder and director of Educational Consulting Associates, Inc. “That’s the challenging part.”
This complex form of masking makes it more challenging to diagnose a girl or woman with autism. In fact, a 2017 study published by the American Academy of Child and Adolescent Psychiatry found that the male-to-female diagnosis ratio is close to 3:1.
Despite the many hurdles in receiving a diagnosis, its importance should not be understated. An early diagnosis allows for a more complete understanding of one’s own mind and can guide parents as they seek to make the best decisions for their child. Early intervention may also help close the gap in associated social, motor and speech delays.
“Recent studies have found that when diagnosis and intervention were delivered before the third birthday, improved social communication skills were indicated,” says Marchman. “If a child does not receive intervention for social communication and other developmentally delayed skills such as motor functions, speech, sensory integration, etc., and there are impairments in joint attention and early social responsiveness, then later social learning can be significantly impacted.”
There are many resources available for those with autism and their families in Central Florida.
Educational Consulting Associates acts as a starting place for individuals with autism, focusing on comprehensive and early childhood neurodevelopmental evaluations. However, Marchman’s work doesn’t stop there, as she also works with adults in order to provide diagnoses that may have been overlooked in their childhood.
With an experienced professional and educational background in diagnostic evaluation, educational therapy and parenting consultation, Marchman is deeply familiar with the importance of an accurate diagnosis. Understanding the complex nuances between diagnoses and how different disorders present in those of different ages and genders, is the key to her success.
“I specialize in evaluation and diagnosis as well as psychoeducation for parents and those working with autism. I’ve evaluated children through adults on the spectrum for over 25 years,” says Marchman. “My efforts have become especially focused on appropriately evaluating adults who have been misdiagnosed or overlooked as being autistic, as well as on girls and women on the spectrum as they can present very differently from the male phenotype. I also provide workshops for mental-health professionals on adult autism and girls on the autism spectrum.”
For more than 30 years, Devereux Florida has been helping those with a wide range of mental and neurodevelopmental disorders.
“We have seen firsthand the life-changing impact that can be made when behavioral treatment is delivered in a clinically sound approach that also addresses the impact to a child’s mental health,” says Michelle Llorens, executive director of Devereux Advanced Behavioral Health Florida. “Devereux offers an array of services—from children’s residential treatment for those with the most intensive needs, to community-based services for parents and caregivers to be supported and provided with tools to prevent situations from escalating to a crisis level.”
In addition to a myriad of other services and to better cater to the needs of those with learning and developmental disabilities, the organization offers The Devereux School, an accredited K-12 program school located on its Viera Campus. A low student-to-teacher ratio, up-to-date technology and constant communication with children’s care providers ensures a tailored educational experience.
At InBloom, behavior analyst board-certified clinicians work with the children to provide applied behavior analysis (ABA) therapy. Through ABA therapy, skills are taught by combining tasks with activities that the child prefers, making learning those skills something to look forward to. During therapy sessions, children work on a variety of different skills such as communication, social, play and more.
“ABA is supported by decades of research demonstrating its effectiveness for improving the quality of life for individuals with autism,” says Fittro. “ABA therapy continues to evolve and places a strong emphasis on creating a compassionate and motivating learning environment.
Close attention to both developments in abilities and changing interests of the children ensures a consistently tailored plan, and ongoing discussions with parents and caregivers help to relieve anxiety and keep everyone on the same page.
Recognized and accredited by the Behavioral Health Center of Excellence, FoundArt also provides applied behavior analysis therapy but infuses it with artistic expression in order to make learning and building new skills an enjoyable activity for their students. They work closely with schools and families to individualize their services to the needs of the individual child.
“Most children gravitate toward art. The color aspect of art motivates them and we try to incorporate that into the therapy so that they’re drawn more to the intervention that we’re working with,” says Ever Quinones, operations manager for FoundArt. “Giving them an art project to collaborate with other kids in a social setting can help implement different skills and target different behaviors that the child may otherwise not gravitate toward.”
FoundArt also offers caregiver training in the different approaches they can take toward working with their children.
Despite the myths, autism isn’t just a childhood disorder. While associated delays can improve over time, their impacts often last a lifetime. In addition, sometimes a formal diagnosis isn’t received until well into adulthood. Quest Inc. understands this and has expanded programs to assist those with autism beyond adolescence.
“Transition services for those we serve is one of the distinguishing factors of what we do at Quest,” says Aragon. “Families face critical, and often daunting, decisions as their child approaches adulthood. We offer life-skills training, employment training and job placement opportunities as well as residential and recreational opportunities that help with their transition. Oftentimes, families are completely surprised by the abilities and independence that are gained through these programs, offering them insight into a more independent life for their child than they ever thought possible.”
In 2021, Autism Awareness Month became Autism Acceptance Month. It marked a significant change in society’s relationship with those with autism. While it is still important to raise awareness of the challenges those with autism face and the important resources available for them, Autism Acceptance Month highlights more than that. It takes a compassionate and understanding community to ensure those with autism find their place and feel included in society.
A growing trend of acceptance makes it possible for those with autism to continue developing their motor, social and emotional skills outside of their designated classrooms and allows for families to enjoy a day out without fearing judgment by ill-informed strangers.
“Autism Acceptance Month provides an opportunity to further education and understanding of autism,” says Llorens. “To learn more about how our community can support those in need through specific action [and] encourage acceptance of people with autism to promote a more inclusive society.”
Resources
Devereux Advanced Behavioral Health
Orlando | (800) DEVEREUX
DevereuxFL.org
Educational Consulting Associates
Orlando | (321) 766-7811
DrKMarchman.com
FoundArt Academy
Orlando | (305) 406-3689
FoundArtAcademy.org
InBloom Autism Services
Apopka, Orlando, Winter Park
(888) 754-0398
InBloomAutism.com
Quest Kids Therapy
Orlando | (407) 218-4340
QuestInc.org/Quest-Kids-Therapy