During the month of April when the whole world was on lockdown, I started to get more into advocating for Autism. I figured it was a good way to educate kids about what they may not learn in school. Since at the time I couldn't do anything in person, I did that through social media and writing (Woah technology am I right)
I discovered the Actually Autistic community through social media and there it made my isolation feel a lot less lonely, I started to really relate to their experiences because I also experienced those things as a child.
Unfortunately, there are times when our voices tend to get drowned out by parents, saying that they know everything about Autism because of their kids, or their nieces or nephews, or Autism Speaks. There have been plenty of instances where parents have dismissed advice from autistic adults saying that they shouldn't tell them how to parent their kids.
We aren't telling people how to parent their kids, we are simply giving helpful advice here, when you listen to autistic adults you will know the following things.
Many autistics prefer identity-first language
Now I know that each individual is different and they want to be person-first however it is up to the person themselves to decide and not for a neurotypical individual to determine for us. Many autistics prefer identity-first language and don't try to correct us saying that doesn't define us.
But keep in mind you wouldn't call a black person a "person with blackness" or your gay friend a "person with gayness" or a deaf person a ''person with deafness'' so why would you assume that's how we would want to be referred as. It's part of who we are, it's not an accessory that we can just leave at home, it comes with us wherever we are going.
We Are Our Own Experts
Parents may have second-hand knowledge of what autism might be, but autistic individuals are ultimately the experts of their own autism. We have lived it, we grew up with it, we can be a good role model for your child, when we offer you advice on Facebook just know that we are trying to have a conversation with you just, we aren't telling you how to raise your child, we are just giving advice.
Don't get offended if there is something that we don't like, keep in mind that everyone has different experiences
We don't like functioning labels
When you use functioning labels like "high functioning" and "low functioning'' it is actually very harmful to us.
Typically the "'low functioning" label is given to those who are non-speaking, by giving them that label, you are dismissing the voice that they have. Just because they can't talk the traditional way doesn't mean that they don't have anything to say. They can use sign language, they can use iPads, they can use anything to talk, by giving them that label you are basically saying that they aren't human which is not true.
The "high functioning" label is also harmful, maybe most of us can do daily tasks with little to no assistance needed, but we still have issues, like sensory issues, we might be able to work and go to school but that doesn't mean that we don't have struggles, with that label, you dismiss our challenges and needs which can really hinder us in the future.
So let's burn these labels in the fire who wants marshmallows?
Autism Speaks is a horrible organization
There are many amazing organizations that help autistic individuals Autistic Self Advocacy Network (ASAN) is run by Autistic Americans and Autistic Women and Nonbinary Network (AWN) which gives resources for autistic women, girls, nonbinary people, and others of marginalized genders.
But yet even with all of those great organizations, people still choose to support Autism Speaks. Maybe it is the most popular organization, maybe a whole bunch of celebrities and big-name companies support it, but if they knew all the facts they wouldn't.
With projects like Autism Every Day where it's mostly about the parents talking about how difficult their kids are, and I Am Autism where autism is compared to AIDS, cancer, and diabetes is really not an organization I want to give my money and time to. The name is ironic because there are no autistic board members, it should be called "'We Speak For Autism"'
Instead, find a charity like ASAN and AWN or maybe something local to you, like a work program, an arts program, something that actually helps the children get the tools they need in life.
So, what I am saying here is don't discredit autistic adults we can give a lot of great advice, we can offer many words of wisdom to help the children have a great future. If you see us comment on the internet don't dismiss us, we are happy to help you guys out, ask us questions, I also write many articles about autism being autistic myself so if you want some helpful advice feel free to reach out!