Autism is a topic that is near and dear to me. I have spent the majority of my adult career working with both adults and children with varied abilities, supporting them in school, work, social and home environments. Many of my former clients were on the autism spectrum, ranging from those who are nonverbal to folks who are mostly independent but have trouble navigating social situations. (Don’t we all?) I, myself am somewhat socially awkward, and could be found at a dinner party sharing way too much information about Jeffrey Dahmer with unsuspecting and polite strangers, or spouting random movie quotes at inappropriate times. I once had a meeting with the CEO of the organization I was working for, along with my upper management and other higher ups in the company, where I quoted “Mary Poppins” as I was shaking hands and saying my goodbyes (I was sooo close to making it out of there without completely embarrassing myself).

When I first began this journey, I admit I knew nothing about autism. I didn’t understand it, I didn’t have any personal experience with it, and I certainly didn’t know that people with autism diagnoses would be so awesome! Some of my most favorite work experiences have been in this field. Why, you ask? I truly appreciate the ways in which autistic people think, learn and interact. People with autism are often extremely literal, and have difficultly understanding the nuances of the “grey area”. It has made me more aware of how I speak, teach and engage. This world is full of grey areas, if you haven’t noticed. We all do this dance, where we tiptoe around THE thing we want to say, and instead say things can be subjective and open to interpretation. This does not fly with people on the spectrum. I will provide a scenario: You work in social services and one of your clients has made some passive statements about death. When attempting to further assess, you ask “Are you having any safety concerns?” Seems like a valid screening question. Except, what are safety concerns? Someone on the spectrum may be wondering if we are asking about the check engine light that came on in their car yesterday, or if we are referring to the current conflict in the Middle East, or if we’re asking about that one mean looking dog who always barks when they get the mail, or the neighbor who raises their voice when speaking with their kids, or the drinking water that doesn’t look right. Safety concerns? YES! All the time! Nothing ever feels safe! And now that you mention it, here is a list of 87 other things that are upsetting me right now…. and suddenly your client is escalated and you still don’t really know what exactly is going on for them. BE DIRECT. Use the hard words, ask the difficult questions. It’s SUCH an important life lesson, and I have autism to thank for that. DON’T use cutsie language, sarcasm (when it’s important), or idioms. Once, when working in a preschool classroom, I was encouraging a student to hurry and finish washing his hands after using the bathroom, so we could go to recess. I said “Let’s wash our hands lickety-split so we can go play outside!” The student looked at me bewildered, then licked his hands and spit in the sink. Aww, okay, my bad. Good job buddy! Let’s try that again.

Like many of you, I watched the above press conference, given by the secretary of the Department of Health and Human Services, Robert F. Kennedy, Jr., in complete and total shock. I wondered, has this person ever really spent any time with people with autism? There was no effort to use person-first language, calling these Americans “autistics”; there was very little understanding of the spectrum of the diagnosis; there was no acknowledgement of the positive abilities of a person with disabilities and the contributions they make to our society; he was dismissive and insensitive to the love and joy families experience , and lastly and worst of all, he claims autism is a curable epidemic that is known to be caused by environmental toxins. This is just not true, or maybe partly true at best.

Let’s start with a little background about RFK Jr., and autism research up to this point. Robert F. Kennedy Jr. is the son of the late Robert F. Kennedy, and nephew of President John F. Kennedy, and he was 14 when his father was assassinated during his presidential campaign in 1968. He is a graduate of Harvard University with a BA in American history and literature, and then went on to earn his juris doctor from the University of Virginia and Masters of Law from Pace University. RFK Jr. is a lawyer, and an educated one at that, but has no medical training and no educational foundation in scientific research. Also, he’s not known to be a real nice guy. He has a long history of drug use and abuse including a felony conviction for heroin possession in the 80’s, sexual assault allegations and unusual treatment of animals including claims involving a dead bear in NYC’s Central Park and claims made by his daughter that he once beheaded a dead, beached whale, strapped it to the roof of the family car and drove 5 hours home with it. He is also a known conspiracy theorist, and has made controversial public claims about everything from JFK’s assassination, election validity Covid, AIDS, chemtrails, vaccine safety, and of course autism. Despite all of this, he has been a successful lawyer and career politician. He IS a Kennedy, after all. Perhaps the Trump administration felt the family name would provide some credibility to their cabinet, but members of the Kennedy family have publicly distanced themselves from him stating that his spreading of misinformation regarding public health matters is irresponsible. Caroline Kennedy has publicly called him a “predator and a hypocrite” who is unqualified to hold his current position and that he is responsible for not just enabling but encouraging the drug use of other Kennedy family members, a statement supported by other members of the family.

The crux of the issues surrounding autism and vaccines comes from a study published in 1998, citing a link between the preservative thimerosal, found in the MMR (measles, mumps, rubella) vaccine and increased autism rates. This study caused quite a stir, particularly among new parents and is widely known to propel the Anti-Vax movement. However, twelve years after its initial publication, the study was debunked and the paper was retracted. Now, among the medical community, it is commonly understood that although vaccines can have side effects, they are generally mild and vaccines are a safe and necessary part of routine childhood preventative care. But, the Anti-Vax wheel was already turning, and although there is scientific evidence to prove vaccines are safe, there was little that could be said to change peoples opinions. Anti-vaxxers felt they had some pretty strong evidence as well, being that autism rates were continuing to rise year after year. Which, technically, is true. In 1995 autism was diagnosed in about 1 in 500 children, while in 2025 rates have significantly increased to about 1 in 31 children. Many believe, much like RFK Jr., this increase is due to environmental toxins; vaccines, food additives, heavy metals like mercury and lead, pollution, pesticides and medications, and deny any genetic link to autism or any other hypothesis such as increased awareness of the disorder, better and earlier testing for autism, and expanded diagnostic criteria to receive an autism spectrum disorder diagnosis.

The Psychology Bible, the Diagnostic and Statistical Manual of Mental Disorders (DSM), was first published in 1952 and did not even include autism as a diagnosis. At that time, it was called childhood schizophrenia and psychosis. I wasn’t until the DSM III was published in 1980 that autism became it’s own diagnostic category. This definition of autism focused on pervasive delays in language development, lack of responsiveness to others, and “bizarre” responses to the environment which included attachment to specific items or specialized interests and difficulty with transition or change. In 1987, there was a revision to the DSM III, which began to broaden the concept of autism and introduced PDD-NOS (pervasive developmental disorder – not otherwise specified) under the umbrella of autism. This became the catch-all diagnosis for those who maybe displayed some but not all of the diagnostic criteria, and maybe showed other symptoms that were a little different from the textbook diagnosis. Providers often use a NOS diagnosis when it’s clear their patient needs support, but will not qualify for services under a different diagnosis. It’s not until 1994 that autism is considered to be a spectrum, which basically means that autism manifests itself in many different ways, but it won’t be until 2013 that the individual conditions associated with autism are reclassified as autism spectrum disorder (ASD). By eliminating the subtypes, ASD allows for expanded diagnostic criteria, which in turn (gasp), produces increased autism diagnoses! I would like to acknowledge, that although an official diagnosis is extremely important to receiving services and supports, particularly for early intervention and school aged children, the idea of diagnostics in mental health is really more of a tool used for billing and insurance purposes. Mental health providers address specific areas of concern or “symptoms”, both with behavioral interventions and with medication. The diagnosis does not inform the treatment, the symptoms do.

Here in Maine, institutionalization of those with disabilities, including autism, was not just common but also the recommended practice for families. The Maine School for the Feeble Minded opened in 1908, and the school regularly performed forced sterilizations of its residents, most of them young girls. These were medical procedures that were completed without their consent, and I do not know if the school obtained consent from the parents or guardians of minors before performing these procedures, however it really doesn’t matter, given that there were multiple sterilization laws passed in Maine in the 1920-30’s. The hope was to “prevent reproduction of feeble mindedness and mental disease”. This all sounds pretty antiquated, right? Well, how would you feel if I told you this practice did not end until 1963? For context, 1963 was also the beginning of Beatlemania, Cap’n Crunch hit supermarket shelves, Johnny Depp and Brad Pitt were born, and both JFK and MLK Jr. were assassinated. In other words, not very long ago. Many who lived at the Maine School for the Feeble Minded, later renamed Pineland School, are still alive and vividly remember the mistreatment they endured there., despite RFK Jr.’s beliefs that people “with full blown autism are not seen walking around a mall” into their 70’s. It’s so nauseating.

With the deinstitutionalization movement in the 1970-80’s and the passage of the Americans With Disabilities Act in 1990, more and more services became available for people with disabilities. With support, many were able to live independently, work, have families, participate in community events and have meaningful and productive lives. Not only that, but the public perception of people with autism and other types of disabilities has shifted to be more positive and accepting. Stigma, discrimination and barriers to accessing services and supports still existed, but with the ADA there are safeguards in place.

That brings us to today. Earlier this week, MaineGeneral Hospital in Augusta announced they are closing their pediatric psych program, due to decreasing reimbursements from insurance companies and lack of federal funding. This will do little to support working through the backlog of families waiting for assessments. Families will have no choice but to continue to wait for a diagnosis and to become eligible for services like in- home supports and early intervention programs. An official diagnosis is also needed to receive help in school and to have an IEP. Without this, many children and families will have a lot of difficulty with basic functioning, emotional regulation, safety and a host of other issues that can lead to really scary crisis situations. Sometimes, in desperation or due to lack of other options, these situations require police intervention, which can be really traumatizing and stigmatizing for all involved. Trauma increases emotional distress, which leads to dysregulation, and the wheel keeps turning. Not good for anyone.

It feels as though things in our country have taken a giant leap backwards, particularly in regard to women’s rights, the LGBTQIA+ community, those who are low socioeconomically, BIPOC individuals, and those with mental health disorders or disabilities. The marginalized communities have become more targeted than ever before. It’s a really frightening time to be a human. And, it’s an extremely difficult time to work in social services. Social workers, mental health professionals, teachers, and advocates are feeling all the same stresses as everyone else, with the additional concerns regarding federal funding impacting their livelihoods. Many people who work in helping professions are also experiencing targeted marginalization. Then, after a long day, they sit down with a beverage to mindlessly doom scroll, and see things like this. There is always room for hope.