I’m standing in a room full of people who are cheering, laughing, and collectively enjoying an extremely noisy event. Suddenly, I feel very ill, and I know I am in danger. My attempts at getting the attention of the people around me fail, they are busy and it is too loud.
In that moment it is imperative to make them hear me. My survival depends on it. The stress level rises to the point of panic, then I wake up.
As parents of autistic children, understanding what it means to be autistic can mean the difference between us and/or our child feeling desperate to communicate and understand, and achieving true connection as we bond together. Reducing the stress level of both parties is paramount to mental health and wellness and the forming of strong relationships.
Though autism spectrum disorder (ASD) is experienced differently by each individual, there are common factors that can give us an idea of what our autistic child may want, need, or see. Understanding them better, being able to anticipate their needs, and joining in their interests builds our relationship with them. In this article I want to explore what it is like to be autistic, and provide insight that can help bring clarity to our child’s behavior, autism symptoms, and social communication.
What does being autistic really mean?
Autism is known as a spectrum disorder with symptoms and criteria that range in severity across the spectrum. The criteria is defined by the American Psychiatric Association in the Diagnostic and Statistical Manual (DSM-5).
The four “types” of autism
Autism used to be defined in four types, and many people still refer to them as a way to explain their child’s symptoms or behaviors to others. Autism is a complex disorder, so family members of individuals with autism spectrum disorder should know as much as possible about how they experience autism, and strive to understand and connect.
In an article titled Autism Spectrum Disorder: Definition, Epidemiology, Causes, and Clinical Evaluation, the writers state: “In DSM-5, the concept of a ‘spectrum’ ASD diagnosis was created, combining the DSM-IV’s separate pervasive developmental disorder (PDD) diagnoses: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS), into one. Rett syndrome is no longer included under ASD in DSM-5 as it is considered a discrete neurological disorder. A separate social (pragmatic) communication disorder (SPCD) was established for those with disabilities in social communication, but lacking repetitive, restricted behaviors. Additionally, severity level descriptors were added to help categorize the level of support needed by an individual with ASD.”
The “levels” of autism
There are three so-called “levels of autism”. The levels of autism were assigned based on the level of difficulty coping some with autism spectrum disorder experiences. Each level indicates how much support each person needs for living independently as possible.
Each level is experienced differently by each individual. Observation, communication, and provision are the steps to understanding. If we hope to understand and be of help we have to put ourselves in the “shoes” of the individual with autism.
Risk factors for autism spectrum disorders
The risk factors for developing autism spectrum disorder are still being discovered. As we learn more about autism spectrum disorder, our knowledge of how it affects people, and how to help also grows.
The aforementioned article also states: “ASD occurs in all racial, ethnic, and socioeconomic groups, but its diagnosis is far from uniform across these groups. Caucasian children are consistently identified with ASD more often than black or Hispanic children. While the differences appear to be decreasing, the continued discrepancy may be due to stigma, lack of access to healthcare services, and a patient’s primary language being one other than English.
“ASD is more common in males, but in a recent meta-analysis, true male-to-female ratio is closer to 3:1 than the previously reported 4:1, though this study was not done using the DSM-5 criteria. This study also suggested that girls who meet criteria for ASD are at a higher risk of not receiving a clinical diagnosis. The female autism phenotype may play a role in girls being misdiagnosed, diagnosed later, or overlooked. Not only are females less likely to present with overt symptoms, they are more likely to mask their social deficits through a process called ‘camouflaging’, further hindering a timely diagnosis. Likewise, gender biases and stereotypes of ASD as a male disorder could also hamper diagnoses in girls.
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“Several genetic diagnoses have an increased rate of co-occurring ASD compared to the average population, including fragile X, tuberous sclerosis, Down syndrome, Rett syndrome, among others; However, these known genetic disorders account for a very small amount of overall ASD cases. Studies of children with sex chromosome aneuploidy describe a specific social functioning profile in males that suggests more vulnerability to autism. With the increased use of chromosomal microarray, several sites (chromosome X, 2, 3, 7, 15, 16, 17, and 22 in particular) have proven to be associated with increased ASD risk.
Other risk factors for ASD include increased parental age and prematurity. This could be due to the theory that older games have a higher probability of carrying mutations which could result in additional obstetrical complications, including prematurity.”
What can parents do to better understand their child with autism spectrum?
Stephanie Bethany, who was a speaker at the Autism Parenting Summit, shared in her video, What Is it Like to Be Autistic? (linked below) that to be asked what it is like is the same as being asked what it is like to be human. She then went on to describe the specific areas she sees in her life that are different as a person with autism, how they affect her and her relationships, and how her symptoms manifest in her own life.
Every person with autism spectrum disorder is different. I do believe that the best way to understand is to learn from the source with input from professionals in the field.
Know the common symptoms
Knowing the symptoms of autism spectrum disorder is a start. If we understand how our child’s behaviors, social communication skills, and daily life skills are affected by autism, we can better understand what their struggles, needs, and desires may be in a given situation.
The symptoms of autism spectrum disorders vary, but knowing them can be extremely beneficial to parents and other family members. Some common symptoms of autism spectrum disorder (ASD) can include but are not limited to:
- repetitive behaviors
- intellectual disability
- lack of eye contact
- limited social communication skills
- Seeing the world through a “different lens”
- poor coordination
- Sensory input or output regulation difficulty
Children with autism often feel misunderstood. Social interactions can be painful or confusing. They may engage in repetitive patterns that cause them to act in ways that are “socially unacceptable” creating a vicious circle.
Reading facial expressions, humor misunderstandings, and crossing social boundaries can increase the child’s risk of losing friendships. As parents, our relationship with our kids with ASD can provide a strong structure of support as they learn to interact with the world. Advocating for them and teaching them to advocate for themselves will show them that they are worthy of love, and give them the courage to keep connecting with others.
Know your child
Children with autism may communicate differently. Some are nonverbal or nonvocal and communicate through other means such as sign language, PECS, or other devices. Whatever system they use, their unique experiences can be conveyed.
It is our job as parents to hear them based on their own language skills. Moving forward, as their language skills grow, we can keep learning and listening to them. Using other’s experiences as a guide, we can know our child, and meet their needs accordingly.
Provide for your child
If autism is expected, testing and evaluation is key. Early diagnosis and early treatment are important. Providing help from professionals is one way to get to know your child more and better understand how they experience autism, and help them feel seen, heard, and loved. Professionals can include:
- child psychologists
- developmental and behavioral pediatricians
- occupational and other therapists
- child neurologists
- child psychologists and psychiatrists
All of these can all be useful in helping our child deal with some of the symptoms of autism spectrum disorder, including communication.
Autism is a lifelong disorder. What autism is like and how it affects everyday life is different for each person.
For example, missing social cues such as body language can lead to misunderstandings, while missing development milestones can isolate someone from their peers at a very young age. How things like this affect brain development, self esteem, and mental health is different for each person.
There is great beauty in autism. So much of the world changing, and life changing innovations have been born in the autistic mind. It is important to learn from the autistic community, to believe others with autism, validate their experiences, and let what we learn change the way we respond to our kids.
A neurotypical person can never truly understand what it is like to be autistic. Even if we could pull a “freaky friday” and switch bodies with an autistic person, we would only have the privilege of experiencing their unique perspective, not someone else’s. The best we can do is be open minded, to learn all we can, and to put into practice what we know.
Many children with autism spectrum disorder feel misunderstood because they are. As parents, we can help with that by listening to them, honoring them, loving them, and advocating for them. We can’t always change the world for them, but we can recognize how they can change it, and be their biggest cheerleaders.
With the help of professionals and the greater autistic community, we can expand our understanding. We can build relationships through mutual understanding and support as we strive to change the arbitrary social systems that restrict the ability of autistic people to freely express themselves. I believe this is hugely important.
Stephanie Bethany is a person on the autism spectrum who has shared her wisdom to advocate for herself and others. Her YouTube channel is dedicated to raising awareness and understanding. The video I mentioned earlier, as well as many other informative videos, can be found here.
For interviews with other members of the autistic community as well as professionals in the field, register for the next Autism Parenting Summit here.
Hodges, H., Fealko, C., & Soares, N. (2020). Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation. Translational pediatrics, 9(Suppl 1), S55–S65. https://doi.org/10.21037/tp.2019.09.09
Thibault, R (2014) Can Autistics Redefine Autism? The Cultural Politics of Autistic Activism.