Essay: What comes after RFK Jr. labels his cause for autism?

April is winding down, putting an end to another Autism Awareness Month. This one has been rather eventful in the national consciousness. Health and Human Services Director Robert F. Kennedy Jr. has pledged to assemble a team of scientists to find the cause for autism by September. 

The Center of Disease Control and Prevention says that one in 31 children fall into the autism spectrum. My 22-year-old son is on the spectrum, and is diagnosed as level three, the most severe and profound. By now, it doesn’t really matter to me what has caused his autism. What is more important is that there are services and resources available for him and his caregivers.

My son, like roughly one quarter of those diagnosed with autism, is going to need lifelong care. These are the ones targeted in recent public comments by Kennedy, who called out the inability of people with autism to pay taxes, hold down a job, play sports, write poetry, and even date.

In these statements, which could be called inelegant in the most generous possible interpretation, Kennedy also said that “autism destroys families.” But it’s not autism that ruins families. It is a lack of quality services, a lack of respite, a lack of resources, a lack of understanding. It is not knowing what is going to happen to your child after you die.

There are so many profoundly autistic children, like my son, who are unable to speak for themselves. As his legal guardian and one of his primary caregivers I must advocate for him. What services are now being provided for these children and young adults as they age out of public-school education at age 22? What respite is now being offered to caregivers who have to work to provide for their families and take care of a very high needs person simultaneously? When a representative of a major medical institution told me my son’s jumping out of a moving car was merely disruptive behavior, I have to question where the real help is. I can tell you there is not much, and what is out there is of differing quality and very difficult to find. Wait lists are long, and parents are desperate for any assistance.

Frankly, I’m not seeing much more than alarmism and fear from the highest level of our government. Despite Kennedy’s claims to the contrary, autism is not a preventable disease. No one catches autism from a sneeze, or a virus. Vaccines do not cause autism. So many studies have proven this. There is no there there.

That whole controversy stems from parents who want their child to be something else from what they are. I know this. I’ve felt this, so hard. I’ve wanted to point a finger at everything else other than my own genetics and say, “You did this to him.” This does not mean that I was right. 

Is Kennedy trying to game the study? Will he have the scientists show that, yes, vaccines do cause autism, despite years of studies to the contrary. Selecting a long-discredited vaccine skeptic to run the study certainly suggests where things are headed. And after so many scientists and researchers have had their funding cut off or been outright fired, ceasing the potential cures of many diseases, I lack any belief this government is acting in good faith. 

That said, let’s say that they do, in September, announce that vaccines are the cause of autism. Then what? The dog caught the car. Anti-vaxxers have been proven right, by science.

Will appropriate, affordable treatments and therapies then be provided for those with autism?

Will there be appropriate education for those with autism? 

Will there be appropriate and safe housing? Will there be available resources for young adults and adults with autism to live meaningful lives after their parents die or are no longer able to take care of them?

There are millions of children, turning into young adults, with autism. Have doctors been quick to diagnose so parents can use the diagnosis as a referral to get desperately needed medical services? Are professionals better at finding the condition, the way astronomers found more stars when telescopes improved? 

What is the plan come September when so many parents and caregivers need a plan right now?