In the United States, an estimated $262 billion per year is spent on care and services for people with autism. This number does not include social security and benefit payments. If the startling trend of better diagnosis increased autism rates continues, care of individuals with autism in the United States will exceed one trillion dollars per year before we know it.
The staggering costs associated with caring for people with autism starkly contrast the limited and wasteful funds spent on autism research each year. Roughly $300 million is spent on autism research yearly, 75% of which is paid for by the Federal government.
This means that over $800 is spent caring for people with autism for every dollar spent researching autism. Of course, what constitutes autism research is broad and a great deal of it focuses not on relief from symptoms or preventing autism in the first place, but on genetics, validating the usefulness of applied behavioral analysis, and casting blame on fat moms and old dads. In fact, the research to date has been so underwhelming that the best tips WebMD can come up with for preventing autism are: live healthy, don’t take drugs during pregnancy, avoid alcohol, seek treatment for existing health conditions, and get vaccinated.
While neurodiversity proponents vilify people who want a cure, parents lose sleep over who will provide proper care for their autistic children when they die. With many autistics having no chance of partnering or starting their own families, parents rightly worry what will happen when their children are left in a world without a single person who loves them. The darker side of autism is habitually glossed over in any debate about how money should be spent to help people with autism. Families fight for the welfare of children and teens held in four point restraints in emergency rooms for weeks at a time as they wait for an opening at a facility that can marginally manage their needs. Meanwhile, a vocal minority that remains without empathy for the suffering the rest of the spectrum endures, continues to condemn those of us who want better for our kids.
Actively fighting against relief from the symptoms of autism is more than just cruel. It’s financially unsustainable. Spending $800 on care of people with autism for every dollar spent on autism research defies logic. If your leaking roof needs repair and water intrusion is damaging the walls, flooring, and contents of your home, you don’t say to yourself: “I’m going to replace everything inside the house this month, next month, the month after, and the month after that; but screw the roof. Those repairs will happen when they happen.” If you have an ounce of common sense, you spend the money to fix the roof.
It is time those of us with suffering kids stand up and say that both the personal costs as well as the financial costs of autism are too great not to focus on finding a cure. It’s time we shake off the stigma and start calling on our elected officials to close the gap on the utterly absurd $800 to one spending ratio.
And neurodiversity advocates—if you like your autism, you can keep your autism, but if you’re not going to band together to personally fund nearly $300 billion per year to help care for people with autism, and if you’re not going to step up to befriend, love, and care for our kids when we’re gone, then you don’t have the right to shout down and denigrate the children and families who want something different from you.
To contact your local elected officials and ask that they increase funding for autism research that will improve quality of life for those with autism: