The history of Autism Awareness Month dates back more than 50 years to April of 1970, when the Autism Society of America (ASA) first observed this month-long celebration. In 2021, the organization changed the name of the observance to Autism Acceptance Month to focus on accepting all individuals with this disorder.
“While we will always work to spread awareness, words matter as we strive for autistic individuals to live fully in all areas of life. As many individuals and families affected by autism know, acceptance is often one of the biggest barriers to finding and developing a strong support system.”
Autism, or autism spectrum disorder (ASD), refers to a group of developmental disorders affecting the nervous system and impacting an individual’s ability to communicate and interact socially. The United States Center for Disease Control and Prevention (CDC) estimates that 1 in 44 children were diagnosed with autism in 2021, which is expected to rise year over year. For reference, this number was 1 in 150 children in 2000, and it has significantly increased as we discover more about autism through focused clinical research.
Some key findings of ASD include:
- The occurrence of autism is four times more common in males than females.
- Individuals of all ethnic, racial, and socioeconomic backgrounds are affected by these disorders.
- Genetics is a defining factor in ASD, with parental age a contributor in a majority of cases.
- Approximately 40% of those with autism are non-verbal, with 1/3 having intellectual disabilities.
Individuals with ASD have an increased rate of the following conditions, often referred to as comorbidities:
- Attention Deficient Hyperactivity Disorder (ADHD)
- Mental health issues like anxiety disorders, depression, and schizophrenia
- Self-harming behaviors such as biting, scratching, and headbanging
- Epilepsy
- Gastrointestinal (GI) issues
- Sleep problems
- Obesity
Subsequently, there will be many lifelong challenges ahead for those with an autism spectrum disorder. They will require individualized education plans, with many attending high school through the age of 21. Proper life skills and occupational training are needed to help them secure employment opportunities and remain in the workforce. Depending on the severity of their autism, many individuals will need to continue living with family members or in a supervised group home for their entire life. The coexisting conditions listed above will require additional mental, emotional, and physical support for many patients with autism.
As a result, when planning a clinical trial for those with ASD, pharmaceutical sponsors must first understand the many unique requirements of this patient population. As outlined above, social interactions are often complicated, and patients have varying levels of communication and comprehension. Many have other underlying health and mental conditions that contribute to their reluctance to enroll in a clinical trial and their inability to remain in the study through completion.
Clincierge has supported several clinical trials studying autism spectrum disorder, providing patient support services to several hundred participants and their caregivers.
- In one instance, the patient’s mother was concerned her child could not tolerate the sensory overload of air travel. We instead provided them with long-distance ground transportation to the site visits.
- Another patient and their caregiver spoke only Spanish and worried about the challenges associated with a language barrier. They were paired with a bilingual Clincierge Coordinator and Spanish-speaking ground transportation drivers to ensure seamless service to the clinical site and home
Autism Spectrum Disorder: A Personal Connection
According to the CDC, over 1% of the global population is on the autism spectrum disorder, equating to about 75M individuals worldwide. Here at Clincierge, what we do is very personal, as one of our employees, Valerie Cloutier, recently shared how autism has impacted her life.
Valerie’s Story:
“My son Grant was diagnosed with autism spectrum disorder at the age of 4, but he showed symptoms much earlier. Several years later, he was also diagnosed with bipolar disorder, which adds another nuance to his ASD. Many people with autism have additional mental and physical health issues, which often go undiagnosed because their symptoms mimic those of autism.
Grant has always been high functioning and fully verbal, but we have had many issues along the way. Securing appropriate educational paths as we moved around the country with the military has been challenging. His bedroom had a ceiling fan in one of our homes, and he could not tolerate it, so we had to take it down. Also, many with autism tend to wander or “elope,” so we needed to add sensors on the doors when he was younger and chains up high to keep doors secured.
Now 14, Grant attends a wonderful middle school, and he loves history. He still struggles with social interactions, and he hasn’t had a friend in about six years, which makes me sad for him. Otherwise, he is in a good place, and the work we are doing, along with the correct medication regimen, allows him to live at home with us.
I have seen different levels of autism acceptance in the locations we have lived. It is essential to remember autism is a spectrum disorder, so there is no universal way of handling those with ASD. I have seen an improvement in the methods colleges and employers utilize to accommodate those with autism, which encourages me.
We have never been approached about participating in a clinical trial for those with autism, but I would welcome the opportunity to help Grant and those like him. I wish more information was available on clinical trials for ASD and feel additional education on these studies would be very beneficial.
Looking ahead, I think Grant will always require some type of assistance. I don’t think he will ever be self-sufficient, and I wonder what his future will look like. Perhaps a clinical trial for ASD will one day give some insight into the disorder and ways to treat it.”
Join us and support the Autism Society of America this April. This community works tirelessly to create connections and provide support and educational resources which make a difference. Get involved and share resources on social media to spread awareness, promote inclusion, and practice acceptance so Autistic individuals can live fully.
