As a parent of an autistic child, Autism Awareness Month is very important to me. It's a time to spread information about autism, break down stereotypes, and promote acceptance and understanding. It is a time when we can raise our voices to advocate for our children and to share our experiences with others.
For my family, autism is not a label or a diagnosis, but a part of our child's unique identity. Our child sees the world differently, and we have learned to appreciate their perspective and celebrate their strengths. We have also learned to be patient, flexible, and open-minded.
Autism Society of NWPA
In Erie, the Autism Society of NWPA provides individuals and families with support, referrals, mentors, education, and most importantly a community of understanding. They hold regular events, advocate for sensory-friendly days at local attractions, and offer support.
Find out more about this wonderful Erie organization!
But we know that not everyone understands autism. We have heard the ignorant comments, the hurtful jokes, and the dismissive attitudes. We have seen the stares and the judgmental glances. And we have felt the isolation and the loneliness that comes with raising a "different" child.
Awareness is the first step towards acceptance. When people understand autism and how it affects our children, they are more likely to be compassionate and supportive. They are more likely to see our children as individuals with unique personalities and talents rather than as a collection of symptoms.
Understanding Autism: First-Person Insights from the Autistic Self Advocacy Network
Every autistic person experiences autism differently, but there are some things that many of us have in common:
- We think differently. We may have very strong interests in things other people don’t understand or seem to care about. We might be great problem-solvers, or pay close attention to detail. It might take us longer to think about things. We might have trouble with executive functioning, like figuring out how to start and finish a task, moving on to a new task, or making decisions.
Routines are important for many autistic people. It can be hard for us to deal with surprises or unexpected changes. When we get overwhelmed, we might not be able to process our thoughts, feelings, and surroundings, which can make us lose control of our body. - We process our senses differently. We might be extra sensitive to things like bright lights or loud sounds. We might have trouble understanding what we hear or what our senses tell us. We might not notice if we are in pain or hungry. We might do the same movement over and over again. This is called “stimming,” and it helps us regulate our senses. For example, we might rock back and forth, play with our hands, or hum.
- We move differently. We might have trouble with fine motor skills or coordination. It can feel like our minds and bodies are disconnected. It can be hard for us to start or stop moving. Speech can be extra hard because it requires a lot of coordination. We might not be able to control how loud our voices are, or we might not be able to speak at all – even though we can understand what other people say.
- We communicate differently. We might talk using echolalia (repeating things we have heard before), or by scripting out what we want to say. Some autistic people use Augmentative and Alternative Communication (AAC) to communicate. For example, we may communicate by typing on a computer, spelling on a letter board, or pointing to pictures on an iPad. Some people may also communicate with behavior or the way we act. Not every autistic person can talk, but we all have important things to say.
- We socialize differently. Some of us might not understand or follow social rules that non-autistic people made up. We might be more direct than other people. Eye contact might make us uncomfortable. We might have a hard time controlling our body language or facial expressions, which can confuse non-autistic people or make it hard to socialize.
Some of us might not be able to guess how people feel. This doesn’t mean we don’t care how people feel! We just need people to tell us how they feel so we don’t have to guess. Some autistic people are extra sensitive to other people’s feelings. - We might need help with daily living. It can take a lot of energy to live in a society built for non-autistic people. We may not have the energy to do some things in our daily lives. Or, parts of being autistic can make doing those things too hard. We may need help with things like cooking, doing our jobs, or going out. We might be able to do things on our own sometimes, but need help other times. We might need to take more breaks so we can recover our energy.
For more information and resources, visit the Autism Self Advocacy Network at autisticadvocacy.org. The Autism Self Advocacy Network is an organization run by and for autistic people, advocating for the rights of autistic individuals. They work to ensure that the voices of autistic people are heard in public discussions about autism and to promote the principles of the neurodiversity movement.
Autism Awareness Month is also a time to celebrate our children's achievements. Parents of kids with autism have seen our children progress by learning new skills, making friends, and finding joy in their own special way. We know there is still so much more they can accomplish!
 Tatiana Syrikova | Canva |
So, if like me, you are a parent of an autistic child, I want you to know you're not alone. We are all in this together and will continue to fight for our children's rights and a more inclusive and accepting world.
And to those who do not yet fully understand autism, we invite you to take time this month to learn more and join us in celebrating our children's unique and beautiful selves.
Staci Nappi is the publisher of Macaroni KID Riverhead, N.Y.
