Shareable Graphic from UF Health
As Autism Acceptance month is coming to a close for 2024, I am awaiting my own Autism assessment, coming up on May 24th. I have made lists of reasons why I think I have autism, done a lot of reading, and tried to learn as much as I can about Autism through the lived experiences of others.
According to Fair 360,
The theme of World Autism Awareness Day in 2024 is “Empowering Autistic Voices.” The 2024 theme aims to help governments, organizations and communities support and empower people with autism to lead meaningful lives and have fulfilling careers.
By taking the time to listen to the voices of people who are #actuallyautistic this April, we can all come to understand the lived experiences of people with autism, who have often been missing from the dialogue about Autism in the past. Much of the literature out there about Autism is aimed at parents whose children have recently been diagnosed, and leaves out the experience of adults who are autistic.
At the beginning of the month, I addressed this issue here:
Although helping parents to empower their children and live whole and fulfilling lives with Autism is important, many of us weren't diagnosed as children. Back in the 1980's and before, there were many stereotypes about Autism that left many of us, especially women, undiagnosed into adulthood. Since we weren't diagnosed as children, we have lacked access to programs which could have supported our unique needs.
The Autism Society says,
This April, the Autism Society of America is proud to continue its sixth annual #CelebrateDifferences campaign in honor of Autism Acceptance Month. Everyday, we work to create connections, empowering everyone in the Autism community to live fully. We believe that acceptance is creating a world where everyone in the Autism community is connected to the support they need, when they need it. And by everyone, we mean every unique individual: the implacable, inimitable, and irreplaceable you.
Being able to access support and services as an Autistic person opens up doors to understanding ourselves, and our places in a neurotypical world that has typically not understood our inner experiences or our circumstances.
If you want to read experiences of others with Autism and their lived experiences, you can join groups on Social Media to connect. There are also a variety of blog posts available at the Association for Autism and Neurodiversity.
Autism is a spectrum
This means, the experience of each person with Autism is going to be a bit different, although there are commonalities.
According to the National Autism Association, Autism is characterized by:
social impairments
cognitive impairments
communication difficulties
repetitive behaviors
Boiling down a complex condition like Autism down to a few bullet points is difficult, especially when each person's lived experience is different. However, it may take time for us to realize that we aren't experiencing the world the same way as others do.
For example, trying to explain what having "sensory issues" is like to someone who doesn't have them can be difficult. People on the Autism spectrum may be effected quite a lot by changes in routine, heat, cold, texture, lights, sounds, crowds or pain.
Since the specific symptoms, and their severity, may vary by individual it left many of us undiagnosed in our younger years. In the past especially, more boys than girls were diagnosed with Autism.
According to UCLA Health, some of the reason for the under-diagnosis in girls includes:
Fewer social difficulties: Females report more sensory symptoms and fewer communication difficulties than males. They tend to be more socially motivated to form friendships and find ways to participate in conversations with others.
Internalized symptoms: Boys managing autism may experience obvious difficulties with sitting still, aggression or conduct. Girls are more likely to respond to autism internally, developing anxiety or depression. Their response may look like shyness — a socially acceptable norm for girls.
Typical restricted interests: Children with autism (girls and boys) often showcase a uniquely intense or strong interest in one thing. In girls, that thing tends to be something other girls that age also enjoy (such as horses or celebrities), so the behavior doesn’t call attention.
Since many adults with Autism weren't diagnosed as children in older generations (think Gen X and Millennials) it can be a somewhat common occurrence to take a child in for an Autism diagnosis to find out that you are on the spectrum as well. This was the experience for a personal friend of mine, as well as many others in the online community.
Be Supportive
Whether you are a parent, friend, spouse, teacher or coworker of someone with Autism, make sure you are taking time to really listen. When you listen to what others need, it shows that you are interested and that you care. It also lets them know that you are a safe person to talk to about unique needs that your loved one may have.
Acceptance of individual differences can go a long way towards creating a better quality of life for people who are Autistic. This allows us to show our true selves in society, instead of being forced to hide socially 'unacceptable' traits through masking.
Everyone just wants to be able to be free to be who they really are. No one wants to have to hide out of fear, and yet, that is what much of the Autism treatment of the past has focused on. Forcing Autistic children to behave in a socially acceptable way.
By moving from Autism Awareness of the past to Autism Acceptance today, unique individuals are becoming more free to be themselves than ever before. It seems to me, the young generations are more accepting towards peers in general than in our generations.
Learning to see people as people, instead of weird or different, can create more inclusive spaces for all of us to be able to be ourselves without fear.
Thank you to everyone who has spent time this month advocating for Autism Acceptance, or educating themselves about what it is like to live with Autism. By bringing Autism more into the mainstream, we can help future generations of Autistic individuals to live happy and fulfilling lives in a more inclusive society.