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My son is Nonspeaking.
He is diagnosed Intellectually Disabled.
He requires constant care and supervision.
He will most likely live with us long into his adulthood.
He is what many consider to be “severe”. And he was often the only one in his classrooms. The only one in the room at special needs events. The only one who required the level of care and support at the disability conferences and meetings we attended.
He wears his Autism like skin. He does not mask.
He is not often represented adequately within the larger advocacy put forth by the Autistic community.
And he is definitely not represented by the “advocacy” put forth by those large account parent advocates and organizations that will persistently tell you, “this is the Autism they don’t tell you about.” “This is the REAL Autism.”
He deserves far better than he is given and exposed to.
Dismissed and ignored by one side.
Considered to be little more than his struggles by the other.
This will be about the latter.
The ones who feel children like Aidan aren’t capable.
Aimlessly scrolling through Facebook, I stumble across a share by a “severe Autism” organization about Facilitated Communication from Drexel University. It’s negative and it appears as though this organization does not find those who Spell to be capable of doing so.
To them:
Spellers aren’t really spelling. That’s not their voice. They should not have an intermediary.
It was demeaning and hurtful and ableist. From an organization that tasks itself with representing the “side of Autism no one talks about” it doesn’t actually care about my son or stories like his and our family’s.
In the face of parents with Spellers as children, they shot them down. They still balked at the notion their children were capable of doing such a thing.
As people who are intimately aware of what this “side of the spectrum” looks like, why is it that they are not aware of the level of support our children need? Why does it appear as those they don’t under apraxia and motor challenges? Why is it that they don’t think about the fact that many need substantial support in the beginning of their Spelling journey and when they are open and fluent, they may still need someone to hold the board for them? Why do they continue to cite terrible science as evidence that our children aren’t capable?
Science once informed this country that Black people were not only less than, but required a firmer hand, and those that wanted better for themselves were disabled. Science has not been kind nor accurately depicts many bodies. And I say this as a child of science, all science ain’t good science.
These “Spellers couldn’t perform she put to the task,” is their argument for being against Spelling as a way to communicate. And that is the problem, they required a person to perform. To prove they are who they say they are. And can do what they say they can do. Instead of gauging that people are responsive to the environments they are in and the demands placed upon them, it’s not outside the realm of possibility that these Spellers didn’t “perform” well under pressure this intense because so much was demanded and/or expected of them.
They are still Autistic. My son does well in certain situations and less so in others. He is largely influenced by the thoughts and behaviors of others as well as the environment.
Families like ours break our backs and our finances to support our children’s journey with communication. Trying everything we can to see what works and what doesn’t. From Speech Therapy, which has been less than kind to my son over the course of his life. To be forced into PECS, which is a demonstrative display in compliance and lack of autonomy and choice. To have to navigate his communication journey on my own.
Families new to Autism will come across these posts, with organizations acting as paragons of good for their children. The ones protecting them from the big bad world, the Neurodiversity Movement, Autistic adults, the DSM, and now FC, S2C, and RPM.
It isn’t that they don’t believe these methodologies that teach spelling work, it’s that they don’t believe in the children who are under the tutelage of any one of those methods. And if you don’t ever believe someone to be capable, you ain’t gonna believe what they are being taught and how they are being taught is gonna work.
I’m not chasing pipe dreams by having my son undergo lessons for spelling. I am adding this as one more thing to try in addition to other things we are trying. One will stick for him. They have counted my son out before he’s even had a real chance at life.
I refuse to have my son be labeled severe, for reasons that are too many to get into on this post, but I am aware that he will be categorized as such with the State for services, with those in charge of his care, and with the general public upon meeting him.
This organization does not speak for my son. It does not speak for me. I find that they are attractive to many parents because the larger Autistic community has a propensity to not spend much time talking about and/or speaking on the issues and challenges of those like my son. That is some that needs to be addressed and rectified.
But to swing into the bosom of those who appear to lack an ounce of belief in our children is something that I cannot stand for.
And it isn’t that their children have the type of Autism no one talks about, it’s that they don’t actually listen to those of us who do and try to tell their story in a way that still treats them as people and that honors their humanity.
My son struggles.
And I often struggle to care for him.
This needs the space to breathe within the larger Autistic community. These stories need to be told. You won’t know what to fight for, what these individuals and families need if you will always feel that talking about struggles is something that is inherently bad and designed to hurt the overall community.
And, still, while my son struggles and I struggle to care for him at times…he is not only struggle and he shouldn’t be defined as such. Struggles are part of life. And I would argue that many of ours can be far more challenging than another’s and still, my son is not the sum of what makes his life hard. This organization stays true to their mission of “highlighting severe autism” because to sit in that pocket, where you designate the whole of a person as “severe,” requires that you don’t see anything else.
And that goes against everything I know to be true about my son.
No disrespect to those who find comfort in this group and with these advocates, but they ain’t shit to those like my family. They might represent you. You may feel they represent you well. But they don’t honor nor respect my son. They do not honor his story. Nor his person. They have no home here.
And we are deserving of the space to state as such.
My son struggles.
And he is also capable.
Fuck those who feel otherwise.
Thank you. I can’t tell you what a relief it is to find someone like you with the voice and audience you have, to articulate things that make me hear the kill bill music.