Many years ago, while watching the sitcom Parenthood with Ray Romano and the hunky, Dax Shepard, it occurred to my former husband that he may have autism. The role of Hank Rizzoli, an autistic man, was played by Ray Romano and it became very clear there were a number of similarities. Not often before did we see autistic individuals played on television, at least more higher functioning and trying to navigate relationships. Admittedly, we had considered a number of other conditions that may explain his challenges, even Parkinson's to the more extreme because he would often freeze up, suffer with debilitating #anxiety and not be able to move, or would become more rigid and essentially always had tremors and a hunched posture. His social experiences though, even family relationships, were significantly impaired but we just thought he was super quirky. We followed his rules and made life tolerable for him without a lot of question. Adult autism just wasn't a thing a few decades ago.
We - or rather, I - later began recognizing #autism in our children. We have six and because autism has such a genetic prominence, I certainly had ample opportunity to get real acquainted with the nuances of this developmental disorder. This was a real challenge though, to be honest, because labeling and medicating our children, or putting them into a system that trained the authenticity out of them so they fit society's expectations wasn't my desire. I searched for support and guidance, but short of respite care, there was very little available until maybe just within the past five to seven years. As a family practice clinician today, because I have such familiarity and word of mouth is our best marketing strategy, many of my clients are those on the spectrum but even their understanding of their own diagnosis is slim. I don't think many consider their family doctor as capable or educated in autism, and maybe this is true, but that isn't because it is outside their domain as a clinician. Certainly autism has become a big part of my own specialty.
If someone in your family has autism spectrum disorder (ASD), you are much more likely to have a child with ASD as well. While many do avoid "labeling their children," what I am better recognizing as a parent is early diagnosis helps our children better understand who they are, identify their needs and rights, and give voice to that without being conditioned to shape themselves into someone they are not or feel inadequate when they recognize that disconnect.
The resources available today as well, particularly because our state requires that autism treatments be covered by third party payers, makes obtaining an early diagnosis quite advantageous. Autism spectrum disorder is a developmental disorder, so identifying these needs early and connecting them with resources can really impact their lives for the better. There aren't a lot of downsides to this diagnosis.
Controversy: Disorder or Superpower?
Certainly there are those that feel this diagnosis is one that leads to poor treatment by peers and society as a whole, and they aren't inclined to leaning into autism as a disorder, but part of this diagnosis is an awareness that individuals on the spectrum do have difficulty with social interaction, communication, and behavior. The essence of autism is emotional dysregulation, which is the same for Attention Deficit Hyperactivity Disorder (ADHD), which often goes ignored. There is a difference in the brain of someone with autism verses someone without, and true too for those with ADHD and someone without, or even someone with trauma and someone without. My hope for my clients on the spectrum is to help them understand who they are, what they need to live their best life, and how to attain those for themselves.
Why this Happens is Still a Bit of a Mystery
Genetics certainly plays a role, but we know that genetics is only our potential, not the absolute. Our environment, exposures, emotions, and additional DNA variants help define our expression. What we do know is that autism can be identified typically by the age of three years, and lasts their entire life. Identifying this though can be a challenge, for both the clinician and the individual.
Some individuals with ASD have advanced conversation and skills whereas others may be nonverbal. Some need a lot of help in achieving every day activities, while others can live with very little, to any support. Sometimes this diagnosis is clear by 12 months, sometimes it isn't clear until about three years in even the most knowledgeable. Generally though, individuals diagnosed later in life can say they now see that symptoms were present their entire life. Others seem to have significant progression in skills and meet developmental milestones, but then stop advancing or lose those they already acquired. Diagnosis becomes more clear as deficits become bigger challenges. For example, maybe your child really does integrate well but as they become an adolescent or young adult, it becomes more apparent they are struggling to develop and maintain friendships or communicate with their peers? Maybe they don't understand what behaviors are expected at school or later in their job? As a clinician, I think more often I find clients present for anxiety, depression, or attention deficit disorder more often and I think recognize them as having autism.
Children with autism learn differently. They interact differently. They may repeat behaviors or get very focused on one particular interest. They sometimes move in very unique manners, and they engage in unique ways. These characteristics can isolate them, as they aren't understood by their peers so social engagement isn't often embraced. My youngest son for example, often played outside the circle so as part of his therapy, he was taught to keep his body in the circle. I hadn't heard of this before, but once the behavior was coined I appreciated it completely. When in groups of kids, my son can be overwhelmed so he tends to move just outside the group, maybe playing with a toy by himself. He wants to engage, he wants friends, and is his mind, he is playing with everyone but recognizes there isn't connection. The group sees him as intentionally isolating himself, and likely unconsciously makes the decision he doesn't want to play so they ignore him. His awareness of this simple body mannerism, of turning his chest towards the circle or away from the circle gives him the power to engage or not, as feels right to him.
Diagnosing Autism
This really can be a challenge because there is no specific medical test, like a blood test or scan to identify objectively that an individual has autism. This really is more of a clinical exam based on perceived behaviors and developmental challenges, although there are screening exams which help in this evaluation (M-CHAT-R/F is helpful for toddlers). There aren't any professional guidelines yet on which screenings to utilize or even if they are necessary. Routine developmental screenings for ASD are recommended at 18- and 24- or 30-month well-child visits and this is performed by the primary care provider.
This diagnosis does not require a specialist to obtain, although certainly due to the model of care within our healthcare infrastructure, most primary care offices will defer to psychiatry. It really is the role of the primary care provider to screen for this diagnosis from as early as three months of age, all throughout childhood. Diagnosis can occur by two years of age, but who does that comes down to finding a clinician who has earnest interest. Many times this is psychology, but certainly, this can be your primary care provider. Having a prior spouse and several children on the spectrum (maybe a touch of ADHD myself), this is a particular area of interest for me. I can sense it quite quickly.
Developmental milestones are an important part of this evaluation, but that certainly doesn't identify those who are higher on the spectrum. Interestingly enough though, one of my boys is exceedingly smart, tests as a genius, but can't tie his shoes. When intelligence becomes the marker for so many aspects of our development, when one is very bright, we can easily ignore other indicators. My son has difficulty with proprioception. He also doesn't get dizzy, no matter how fast or long he rides the merry-go-round; it's his superpower.
While developmental milestones are part of the evaluation within pediatric care, screening for autism at 18 months and 24 months is the standard of care for all primary care clinicians. We ask about language, movement, and thinking skills. We evaluate behaviors, emotions, and temperament. Sometimes we offer screening tools for parents to fill out at these consultations. If there is another child or parent in the family with ASD, then these screenings are much more frequent.
Even if your clinician does perform a brief test though, as a screening tool, this does not provide diagnosis. Often this may lead to referral to a specialist, because the time it takes to really identify all the nuances in the primary care setting is not realistic to their model of care. This is where ourpractice differs significantly. Our history and physical for new clients is typically two to three hours in length, and that's entirely face-to-face. Documentation and coordination with ancillary staff or referrals is beyond this initial investment with the client.
Developmental pediatricians, child psychologists, speech-language pathologists, occupational therapists, or other specialists are often part of the diagnostic evaluation. They may provide a structured test, highlighting strengths and challenges, and can inform the parent and child on how they might offer them therapy or additional resources. The diagnosis of ASD though doesn't always require a great complexity of clinicians and referrals. Sometimes it simply helps the individual lean into what they already believed to be true. Sometimes it means having the ability to attain accomodations at school so the child can leave the lunch room if overwhelmed. Psychology isn't always necessary, although admittedly, the majority I do refer to speech-language pathologists for social therapy and to occupational therapy.
The diagnosis of ASD (and even ADHD) is often not a single diagnosis, because again, we fail to appreciate the emotional dysregulation within the diagnostic criteria, so autism and ADHD often have anxiety and insomnia or other developmental disorders within the diagnostic list. Depending on the significance of how autism is impacting one's family combined with the expertise and the resources available to the clinician, will really determine where and to what significance there is referral and intervention.
Your clinician should be aware that autism often has pervasive developmental disorders and they really may require interventions beyond what is recognized by either the parent or the educator. For example, children who are high functioning are often those who are incredibly smart but without intervention, the world may never get the benefit of this. Maybe your child really does communicate well, but because of their autism, they don't always express themselves in a socially acceptable way so they are perceived as defiant, rather than autistic. Their disagreeance may be understood as a conduct disorder, oppositional, or even sociopathic when in reality, it is nothing more than failure to understand social nuances when their emotions are dysregulated. Information and understanding can be so healing, for parents and individuals with autism, and I can attest to how overwhelming, isolating, and emotionally exhausting it can be to manage all the needs most especially when no one seems to understand or offer assistance.
What Does Treatment Look Like for Autism?
Not unlike any other condition in functional medicine, I am going to say that the treatment plan is very individualized, but I don't think this could be more true of any other dis-ease. ASD really does present differently in every person, so for me, I want to understand those nuances. Almost every time as I start to pick up cues and ask more questions, clients have an "ah-ha" moment because even they didn't recognize various struggles they were enduring. We learn to overcome. We adapt. We don't recognize the temperature rising many times, until we are boiling. But when we take time to self-study, we can extend ourselves compassion and then begin to give voice to our needs. We can live a more authentic life.
Gathering understanding is key, in my mind. Occupational therapy for example can offer an incredible amount of insight. It can also allow grace, because children once yelled at for not returning after taking the trash out and essentially always getting lost in the department store, or refusing to wear jeans or eat anything other than five specific foods can be extended compassion. We can start to work on the aspects of the brain that need more, or less stimulation. We can dig into epigenetics and identify variants that might be exacerbating symptoms. Is your primary care provider evaluating vitamin B12? If they are, do they supplement with the proper formula or is their recommendation causing further assault?
Social groups, talk therapy with awareness of Theory of Mind, even camps for autistic children to learn social nuances are very healing. Resources though that lean into modifying behaviors or conditioning children to behave, to wear a mask to please others, are heartbreaking to me. Therapists can be as detrimental to the psyche as they can be helpful, so empowering yourself with information is important. I can share what I've learned along the way with my own children. Sadly, our legal system is the most ignorant in this regard, as are many of our school systems, so the trauma for the entire family can be very extensive.
Treatments then are catered to the individual, but almost exclusively, I'll recommend yoga and reflexology. Tactile sensation is so very important, and so is work on the belly. We have clients who take acro yoga classes, which I am a big fan, or simply investing in your own yoga trapeze. Another family in my practice has more recently introduced me to circus classes - yes!
Resources for those with autism are in high demand. It can be hard to get connected, to identify the right resources, and to financially invest, but even more challenging is finding support for family members. It can be very emotionally draining to love individuals challenged by autism and again, this struggle can be felt more so than it can be recognized or articulated so it typically goes untreated. Sometimes autism is accompanied by personality disorders which too, can be exceedingly difficult to recognize. You believe they have autism exclusively so you give grace, but you may feel the victim of abuse which you can't explain. Autism may be the facet you see, but turn that diamond get a new perspective, and you may recognize a plethora of complexity. There are social support groups for loved ones and yoga too, which are truly vital because you have likely poured from your cup far more than you've assured your cup was being served.
This is a condition I could write on for eons, and I have created a program for those who seek better understanding, but if you've wondered about autism for yourself or your child, and you want to discuss it, schedule a consult. I am happy to listen and offer guidance.