"I Will Die On This Hill"
I know the title of this article makes some big promises, but I do think that if you are a parent of an autistic person, you may find some value in what I have to say here.
One of the biggest myths that is going around right now in the autism community is that autistic adults do not care about your child.
From what I’ve seen from fellow autistic adults, this is not the truth! There’s so many of us who want to find ways to advocate for and come alongside our fellow autistics and their families.
One incredible resource for parents is a book titled, “I Will Die On This Hill,” by Jules Edwards and Meghan Ashburn. They discuss how autistics, autistic parents, and parents of autistics can work together to build a community that can make life better for all of us. It’s a fairly quick read with easy to understand language- I highly recommend you check it out if you haven’t already.
One thing that I feel like I should state first is that we do understand that support needs can vary, and we may not have the perfect answer for every situation.
But what I can say is that we do want to find ways to make the world a more accommodating and accepting place for your child to be in. I hope you’ll hold onto this sentiment as I go through some misconceptions about autism and advocacy.
It's always autism - or is it?
One thing that I see ourselves, parents, and medical professionals are learning to discern when a medical concern is correlated to autism, or is actually a separate concern but gets “blamed” on autism.
Here is an example. Let’s say that there is a teenager who has a mild allergy to dairy. This is unknown to herself and her loved ones because it is not severe enough to cause a visible reaction.
Additionally, this teen is also labeled as easily irritable and rude. People will likely attribute this to her being autistic, and think that more social skills training is needed.
This is not a social skills issue.
Eventually, this teen goes in for an allergy panel. She learns that she has had an allergy to dairy this whole time that was causing her pain that led to her irritability. She is able to switch to milk substitutes which reduces her pain and in turn gives her more energy to participate in meaningful social interactions.
This is a fictional story used for demonstrational purposes. Yet, I hope it highlights that there are times when autistics have had physical symptoms that can affect how we navigate the world. There has been a lot of information about autism, particularly negative, that makes it tempting to blame autism for a variety of health concerns that arise.
We all want to avoid this pitfall!
While I know you always have your loved one’s best interests at heart, I have heard personal testimonies from parents who thought their teen was struggling because of autism, when there actually was a completely different root cause. As we each personally strive to have a more comprehensive view of autism and health, we may also find ways to advocate for
more improvements and safeguards in the healthcare industry.
"Where will they live?"
One of the biggest conversations I have heard from the parent community is, “Where will my adult child live when I’m gone?” This is a valid question. However, I want to take the long way round, so please bear with me.
I have recently been learning more about American Disability History. Back in the 50s through the 80s, there were institutions, also known as asylums, where people with disabilities were essentially warehoused.
Institutions were severely underfunded and there were no protections for the residents against medical malpractice. When Americans learned about the horrors taking place in institutions, our country started to disband them and started working towards supporting smaller, more group home housing.
You likely have heard of group homes before! Which means that you also know that they are very expensive and that there’s not many options.
While I am not currently involved in group housing efforts (I am currently a direct support professional at client’s workplaces), I do try to keep tabs on what is happening in this sphere. There is a local organization that I follow and would like to volunteer for more often that provides interdependent living for people in my community.
Parents and advocates both agree that their adult children deserve to live a happy and healthy life. Many of us autistics, at one point or another, have firsthand experience with how difficult it can be to do activities of daily living without help. We want those who need assistance with these tasks to have people there to empower them to have everything they need to live their best life.
Who has a voice in the community?
As we learn more about autism, inclusion, and belonging, we are finding ways to expand autistic advocacy to not only bring people into the fold, but to highlight those who have a diverse range of experiences with their autistic identity.
Autism advocacy started with parents in the 60s and 70s as they worked to dispel the myth of “refrigerator mothers” and to find or develop services for their children in a world
that had none.
Then, with the rise of the internet, autistic teens and adults started to find each other in chat forums or on social media. The internet has connected autistics from all across the globe to people we would not have met otherwise. We also have discussed the ways in which we
talk about autism and symbols that we represent how we see ourselves.
However, sometimes I think us autistics got so excited to find other people like us and felt validated, possibly for the first time, that we may not have initially expanded our networks as far as we should have. Yet, in the spirit of making sure no one is excluded, autistic communities are working to center those who have various support and
communication needs.
One organization that I have seen practice this is the Autistic Self Advocacy Network. When I attended their ACI conference in 2018, they were sure to include autistics from intersectional backgrounds, and incorporated several non-speaking autistics who used text to speech, letterboards, or sign language to communicate. They also have resources available on their website written in plain language to help people who have intellectual or developmental disabilities and their families to understand policy that could impact them.
While there’s still strides to be made, many autistics are working to find ways of community building, both in person and online, that welcomes every autistic person. I hope that parents, autistics who communicate with mouth words and/or autistics who do not have a cooccurring IDD, will find ways to work together to be the metaphorical “microphone” so that everyone’s voice can be heard. If you would like to hear more from non-speakers, we do have a playlist of their podcast interviews available on our YouTube channel.
We Want to Support You
I hope that this piece helped you reflect on how various communities can work together to build a more inclusive world.
If you ever have questions about the autistic experience, our life coaches would be happy to answer them! We have several autistic life coaches that also have experience helping families find a dynamic that works for them.
If you would like to learn more, please schedule a call with our founder, Doug Blecher, to ask him any questions about how our coaching can empower your autistic loved one.