#AuthenticAwareness from an outspoken autism mom: “We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. “
The author’s daughter with severe autism.
By Seasons of Autism
It's 1:45 a.m. P is wide awake. There's nobody else here to take care of my daughter. Nobody out there in the community that has come to despise parents of autistic children so much is here caring for her. None of those people who say I'm not an advocate. None of those people who call me a horrible person. None of the people who claim to know her better than me are here right now. It's just us.
When you walk this journey please don't let anybody tell you what's best for your children. Especially don't let some random person on the internet who claims they know your child because they claim they share a diagnosis. Sometimes I have tried to just stay out of the fights or ignore it. But the other day I saw just how toxic the rhetoric has become. And over the past couple months my view has changed. I can't sit by as an advocate and allow parents to be treated this way. As caregivers we don't have it easy. This is a hard path. The reality for some of us is that our children will grow up and become adults who will continue to need lifelong care. Frankly I just no longer have the patience for the toxic ideologies being pushed.
My daughter is autistic, it is not her identity. It's her diagnosis. Autism and autism alone is my daughter's disability. Due to her autism she will profoundly be impacted her entire life. If you are autistic and have gone on to have children and live a life outside of a caregivers careful watch that is wonderful, but you aren't like my daughter. There's a reason why autism is a spectrum. Call it severity. Call it support needs. Potato, potato. Same difference.
I'm tired you guys. I'm so dang tired.
Being a mother to P has helped me to understand that autism is different in different people. For us, it's changed our lives. As I sit here listening to my beautiful teen script to herself and watch young children shows I'm acutely aware that we are different from those who rail so heavily against parents instead of supporting them. We are different because we understand the difference. So my page is a place to hear people, to understand that severe autism still exists, although in hushed tones. We wouldn't want to offend those who don't understand it. Don't recognize it because it doesn't fit their version of what autism looks like.
I am so darn tired.
So we won't bow. We won't break under the weight of pressure to conform or be canceled. We won't bend to the mob. I refuse to stop advocating for autistic children and their caregivers. I refuse to remain silent out of fear. I refuse to give up and hide in the shadows where they prefer children like mine stay. Voices who certainly can't speak for themselves so if you silence the parents then you've silenced every story of those who cannot tell their own story. Scary thought, isn't it? If we don't speak up the meaning of autism as a diagnosis of a disability will someday change. I've been saying that for quite a few years now. Never did I fully believe it could happen, now I'm not so sure.
We have to be their voice. We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. Please understand me when I say I have wonderful autistic friends who do understand severity levels exist. They do understand the difference. They understand that stories like P's deserve to be heard, just like their own. So please don't be fearful of all autistic adults because I have wonderful friends who have been great help to me and my family. Friends across oceans who I know I could call on at anytime. Friends who also have had their voices squashed because they dared to disagree with the cult like mentality that has formed in some parts of the autism community. Just be careful who you allow in your circle.
“Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital.”
I believe there's hope, but stopping the misinformation is vital. Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital. When someone is saying something is abuse that needs to be looked at through a clear lens. Not a murky one where some people had a bad experience twenty years ago. The world of psychology is about learning and understanding. And it'll never be without some bad apples who probably shouldn't be therapists. But with any profession some people don't belong there. That doesn't mean you toss out all of it.
After all that has been said to me, some of the horrible things, I'm the one that's here for P. These people no longer deserve my respect, or even a response from me. They are no longer allowed to take my energy or my peace. Someday I'll stand in front of my Lord and Savior and I don't believe He'll shame me for saying parents can decide what therapies their child should have. I believe that beautiful day where I finally no longer suffer from chronic pain, where I finally no longer feel tired, or scared, or overwhelmed by anxiety. I believe that day He'll say well done, good and faithful servant. I don't believe we are here by accident. P was no mistake. P is beautifully and wonderfully made. And her home, her peace, her comfort is church. There is a reason she's so at peace there. It's reassuring to me because I know she has a connection to our Creator I probably won't ever understand.
So this is us. Take it or leave it. Seriously. I used to never ban people, and I always tried talking things out. But I'll no longer tolerate hateful people who spew ridiculous garbage. So if you've hung with me I think it's clear my mental health is suffering due to this mess. It has been rough. I have no tolerance for foolishness.
“Take us or leave us, this is our autism journey.”
This is our life. Sometimes it's extremely difficult. Other times are full of great victories. One thing is for sure Autism alone changed my daughter's life. As well as everyone else in our family. And while we've learned to appreciate the beauty, we also accept the emotional drain from the hard parts. And unfortunately for me, even physical pain is part of that equation. Take us or leave us, this is our autism journey.
Thanks for listening. It's 2:45 a.m. now and P is still not back in bed. It's going to be a long night.
#autismjourney #youcansitwithus #norestfortheweary #mentalhealthawareness
Seasons of Autism is the blog of an autism mom based in Nebraska. You can find Seasons of Autism here.
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