As an autistic, I’m eager to share my experiences and thoughts about how those experiences differ from the neurotypical ones I’m surrounded by. When I heard that the Interagency Autism Coordinating Committee was seeking input about autistic experiences, I thought I’d share some of those thoughts with them. If you’d like to share your thoughts, comments are open through 2024-02-14 at this website. If you’d like to read my thoughts, they’re below.
What are the most significant challenges caused by co-occurring physical health conditions in autistic people? (Examples of co-occurring physical health conditions: gastrointestinal disorders, sleep disturbances, epilepsy, sensory and motor challenges)
Speaking only from my personal experience, I struggle with sensory and motor challenges significantly in my daily life. It’s important to note that the experience of this varies significantly day to day. This has lead some healthcare providers and support services to conclude that I don’t need help (if they see me on good days), or for people to decide I’m unfit to drive (if they see me on bad days). There is a significant lack of understanding across the board for care and services in this regard. My experience of autism and related conditions is not perfectly consistent. Just like if you’ve met one autistic person you’ve met one autistic person, If you’ve seen me one day, you’ve seen me on one day.
What are the most significant challenges caused by co-occurring mental health conditions in autistic people? (Examples of mental health co-occurring conditions: depression, anxiety, attention-deficit hyperactivity disorder, aggressive or self-injurious behavior, suicidality)
I have a diagnosis of depress, anxiety, ADHD, situational mutism, and sometimes suicidal ideation. All of the things impact my life to varying degrees, and each can vary from day to day. My experience of these things, like my autism itself, can vary to the point that healthcare providers and services may either dismiss my needs (if they see me on a good day) or decide I’m unfit to direct my own care (if they see me on a bad day). This mirrors my experience of physical co-occurring conditions, and the daily variance is widely misunderstood across the board in healthcare and service provision.
But that said, all of the above takes a back seat to PTSD. Living in a world designed for neurotypical people, where the experiences of autistics are rarely if ever considered, where our perspectives and input are values and integrated into decision making and space/service design, is a fundamentally traumatizing experience. The lack of inclusion of autistics within reach done *on autism* is a stark and painful example of this. The “care” provided to autistics at the Judge Rotenberg Center is undeniably traumatic. Having official diagnostic criteria describe our differences in terms of deficits, in terms of how uncomfortable we make neurotypicals feel, in terms of how inconvenient our behaviors are for neurotypicals, is fundamentally traumatizing. Just like autism is extremely underdiagnosed in women and non-binary people, PTSD is severely underdiagnosed in autistics, with devastating effects. This requires a two-part change. First, we must improve the diagnostic criteria of PTSD and train autistic support services and clinicians to identify how PTSD presents in autistics and equip them to help. Second, we must redesign the services we offer (eg the complete discontinuation of shock therapy and ABA for autistics), the care we provide, the spaces we create, the entire society we live in, to include the perspectives and needs of autistic people to prevent traumatization in the first place.
What are the most significant challenges caused by other conditions that co-occur with autism, such as learning disabilities, developmental disabilities, intellectual disabilities, and communication disabilities?
Speaking only from my personal experience. I struggle significantly with communication differences compared to neurotypicals. My facial expressions and body language are consistently misinterpreted by non-autistic people, often undermining the genuine and positive intent behind my messages. For example, maintaining eye contact is difficult, and a neurotypical may see my gaze shift and interpret it as eye rolling to indicate sarcasm or as a sign of guilt or untruth. Note that this experience doesn’t happen with other autistics. The issue isn’t in what I’m doing with my body, but in the ableist neuronormative assumptions that neurotypical people make about the behavior of others. I also experience situational mutism, which is often misinterpreted by non-autistics as belligerence (voluntarily refusing to speak, giving someone the silent treatment, etc), aggression, or insubordination when in reality I’m in a situation that has robbed me of my ability to communicate by not being accessible to me. Judgements that again I rarely observe when experiencing situational mutism among other autistics.
What additional research is needed to help address co-occurring conditions for autistic people?
This is asking the wrong question. You should be asking, how can we change the way we do research to improve outcomes for autistics. The answer is to stop framing autistic experiences as deficits to be fixed, and instead focus on changing society (including healthcare provision (including behavioral/mental healthcare), therapeutic interventions, the design of spaces, ableism in society), and to include autistics in research that affects us (by including autistic researchers, letting autistics be PI on autistic research topics, focusing on the perspectives and experiences of autistic people rather than centering the voices of our parents and caregivers, and letting us describe ourselves the way we choose to (autistic person, not person with autism). Examine our experiences through a lens of intersectionality: autistics are also racialized, we’re 6x more likely to be gender-expansive than neurotypicals, we’re more likely to be romantically and sexually diverse, we’re more likely to be socioeconomically disadvantaged. Reframe the way that research sees autism, not as deficits or inconveniences for neurotypicals, but as differences to be encourages, celebrated, accepted and accounted for by society.
What could be improved in autism services and supports to help address co-occurring conditions for autistic people? (Examples: Equitable access to and accessibility of services, insurance coverage, service systems issues, patient-provider interactions)
The examples provided are all things I’ve personally struggled with and barely scratch the surface. But the single most important thing services and supports need to do is believe us at face value when we talk about our experiences. Just because I’m autistic doesn’t mean I can’t understand my own gender, and shouldn’t be denied access to gender-affirming healthcare. Being autistic means that I experience and express pain differently, and that different presentation shouldn’t result in me being denied pain management medication when I have a broken arm. Being autistic and non-speaking doesn’t mean that support staff should speak to my caregiver instead of me as if I’m not present. Being autistic doesn’t mean I’m incapable of expressing my own thoughts and feelings, so people don’t need to ask about the experiences my caregiver has of supporting me as a proxy for understanding my experience.
What lasting positive or negative impacts have societal changes due to the COVID-19 pandemic had on physical or mental health for autistic people? (Examples of societal changes: disruptions in services, increased remote work and school, increased use of telehealth, reduced in-person social interactions and obligations)
Speaking for myself, it has allowed me to experience what it’s like to work from home, to have people respect my physical space boundaries, and a reduction of barriers to accessing care in a way that works well for me. Since I’ve been allowed to work from home, my productivity has improved, my mental health has improved in relation to my work, my job satisfaction has improved, I am able to contribute more to discussions at work. I attribute this to being able to fine-tune my working environment to meet my sensory and motor needs, as well as the changes in communication patterns as now people are more likely to contact me via text means than walk into my cubicle and start a face-to-face conversation. The same has been true in accessing medical and behavioral healthcare, where providers are much more likely to have online scheduling systems and offer telehealth visits. Conversely, since the ending of the state of emergency, I often encounter people who are uncomfortable with me continuing to wear a mask. Masking provides me with protection against NT misinterpretation of my facial expressions in addition to protection against deadly diseases (I haven’t been sick in 4 years, compared to every 2-3 months before masking everywhere was possible). I wish that the benefits of masking as a common choice in society had been lasting.