No matter how many times I see a nonspeaking autistic person missing, hear sirens, brace for seizures, wrestle to prevent violent self-injury, or learn about a nonspeaker’s death, I stop breathing. It takes a moment to calm my panic, listen for my son’s noises, and pray before I can breathe. Parents of profoundly autistic children don’t actually know what rest is because rest means risk. Risk means death. When you raise a child with severe autism for three decades alone, you face death frequently, existing in a state of perpetual hypervigilance and fatigue. Life is one act of caregiving or rescue attempt after another. I have forgotten what it is to live without the weight and threat of everything. The only people who care are the ones in the same boat.
Our news feeds carry haunting headlines, desperate pleas, bureaucratic battles, and the unrelenting awareness that profound autism is a life of desperation, running from death, as if we have energy left for anything else. You fear your child’s death because their lives are in constant danger. You fear your own death, because there will be no one to care for your child. When an autistic dies, the grave laughs, and fear clinches your heart. Profound autistics have a 20-50+ higher mortality rate from seizures, respiratory/heart failures, and other comorbidities, a life expectancy of 39, with deaths climbing, especially from drowning. When more children are crippled by profound autism, more people die. Death and fear don’t leave us; they hunt us. Then tragedy, the double murder-suicide, of the Clune family with two nonspeaking autistic members. Our entire community gasps because we know the weary lost the fight. While we are all in shock, the Australian disability system is getting exposed for its failures. Although the scale and scope of severity have exploded, understanding and support remain stunted.
Our lives didn’t have to be this way. Someone is responsible.
Our country is dealing with its own exposure. Nick Shirley testified before the House Judiciary Committee regarding the abuse, theft, and fraud of public disability funds and the government’s expulsive response. Nick Shirley is a hero for conservatives, demanding accountability for government spending and exposing fraud. Collectively, the U.S. is astonished by the scale of theft Minnesota helped the Somali refugees commit. Clearly, there was bias, and it wasn’t for the truly needy.
Parents struggling to work and provide financial and full-time care are in shock and bewilderment. How? How were refugees who don’t even speak English able to defraud a complex bureaucratic system on such a massive scale? Why were the same proofs not applied to refugees that are demanded of citizens? Why do individuals who aren’t profoundly autistic receive resources instead of those who are?
What the public may not realize, as it rallies to cut disability funding, is that parents in most states never see one dollar of their child’s funds. Endless annual/quarterly evaluations, oversights, thousands of pages of therapy notes, and meticulous parental daily care notes are required by the state (we are not only unpaid caregivers, but obligated to provide proof). We have to allocate their funds to pay strangers to investigate us to ensure we are doing the job we aren’t getting paid to do. Their minimal funds are distributed to vendors for our adult child to receive quality services that improve their lives, instead of mimicking the prison of their public education. These services represent motor coaching, nervous system regulation, communication, and growth, the only chance at life we are allowed to have. We don’t want to need these supports, and we hate being beggars. Like everyone else, we just want to be free, self-sufficient, watching our children pursue their dreams. But our freedom was stolen when our children were catastrophically injured by vaccines, and our government decided to protect profit instead of people. Big Pharma, Big Government, Big Media, Big Med & Ed made money and power. We lost the ability to acquire or demand either.
When I watched the hearing about Minnesota’s massive fraud, Nick Shirley was not the protagonist, just a young man trying to uncover wrongs. The hero was the mom who spoke after him, who devoted her entire life to loving her son and others like him who couldn’t speak, so she built a center that believed in and taught the most severely injured, and she kept going even when funding was cut. She helped her son spell to communicate so he could finally have a voice after decades of silence, and described what cutting funding means to those with severe autism to the same politicians who politicize neurological injury.
There was another hero in that hearing, sitting beside his hero mom. He is a nonspeaking autistic young man like my son, the same age as Nick Shirley. Instead of a microphone, he had a letterboard because his voice was destroyed. Instead of speaking, he used every ounce of energy to keep his body still and regulated. Instead of the freedom others take for granted, this young man lives dependent on his mom and others for every need because of the neurological damage caused by childhood vaccines. The free-man vs the injured-man cut me deeply. The injured matter. We matter. This is the humanitarian crisis, the destruction of our youth, our lives, and the denial of justice. And when you deny justice, you deny freedom.
While the public rages about refugees and immigration, it refuses to acknowledge the far greater moral, ethical crises, injuries, and crimes against its own citizens. Childhood vaccines have caused profound neurological damage that is lifelong. It does not destroy the intelligence of these infants. It causes damage across all sensory systems, severely inhibits sensory/motor integration and function, damages cells, nerves, and organs, preventing coordination and control of intentional movements. Their lack of speech and chaotic neurological injuries assign them a diagnosis that cuts off access to communication, education, inclusion, sports, hobbies, relationships, and all of life. It leaves them imprisoned in their bodies, silent surveyors of the crimes done to them.
For years, they hoped to be heard, and through spelling, their stories are being told. The problem is their intelligent voices expose that all the institutions have been grossly wrong. Their voices demand reform of the entire disability system and reveal that families are the only ones capable of providing adequate care, the only ones who should be getting support. Their voices demand justice and an unraveling of industries and lies from which everyone in power profits. Truth gets expensive, so PR campaigns are launched to protect profit. After all, there’s no truth a PR narrative can’t distort. But we, the parents and injured youth, are still waiting for heroes brave enough to help us tell the truth, no matter who gets exposed.
Nick Shirley, though their fraud is massive, the Somalis are guppies. If you want to catch the big fish, go after Big Pharma.
The culture doesn’t take a day off—and neither do we.
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