According to the DSM-5 diagnostic criteria, one of the characteristics of autism is persistent “deficits” in social communication. As an SLP, I thought I understood what this meant, though my idea of social communication difficulty was incredibly narrow and stereotypical (think Sheldon Cooper from the Big Bang Theory). This is probably because the DSM-5 criteria are based on the external behaviors of young, white males, and only those with the most observable differences. Given what we now know about autism based on the lived experiences of autistic adults, we know the diagnostic criteria are flawed and outdated. Autism is an internal, lived experience and a neurotype, not a checklist of observable behaviors. It is impossible to accurately diagnose autism based on outward behavior, yet this is exactly what professionals attempt to do. Autism may present differently in girls, adult women, and minorities, which means we are denying many autistic people their diagnosis because they do not fit the white male stereotype.
When I first considered the possibility that I may be autistic, I thought the only missing piece was difficulty with social communication. I understood topic maintenance, turn-taking, figurative language, sarcasm, small talk, and the fact that no one actually wants a real answer when they ask how you are doing. I also knew that I hated small talk, talked about things I had no interest in for the sake of being social and polite, practiced responses in my head before saying them out loud, and had more difficulty expressing ideas verbally than in writing. When looking back at the past 10 years, I realized it takes me roughly one year to begin to develop friendships when I move to new places. I do not know how to intentionally find or make new friends if it is not by happenstance. What would I say to someone I barely know? How would we connect? Connection is often preferred by autistic people over being social. I have never been that interested in superficial social interaction, but I think people consider it to be friendship (I am not sure). I like to really know someone, which is why I prefer a few close friends over many casual acquaintances. I sometimes get headaches or feel tired in anticipation of social interaction. I get “social hangovers” and need time to regain my energy, especially if the environment was noisy or I was with a larger group of people. I never associated any of these things with autism since I do not fit the stereotype. I thought everyone worried about what to say and when to say it. Thankfully, the autistic community broadened my understanding of autism until I finally recognized it in myself. It seems so obvious now; it is hard to believe I went 29 years not knowing.
I recently spent an afternoon with a family member that I am close to and that I mask somewhat less with. We share a lot of the same interests and have similar goals, so conversation comes pretty easily with her. On my drive home, I caught myself critiquing our conversation (something that happens quite often). I do not want to, it just happens. The following thoughts kept running through my mind:
Did I talk too much?
Did I talk too loudly given the setting (a coffee shop)?
Did I talk about the same topic for too long, even though she seemed interested?
Did I interrupt her?
I forgot some important details, what if I didn’t get my point across clearly?
Did I return to a topic after we moved on to something else?
Did it seem like I just wanted to talk about myself when I told a personal story in response to what she said? (autistic people tend to do this as a way of relating, empathizing, and connecting over similar experiences)
Because I’m more comfortable with her, I was less focused on monitoring myself in the moment (which is a nice feeling but may cause anxiety afterward). My social difficulties are not readily observable because I have learned to mask them. It is when I am comfortable and familiar with someone that I mask less and later wonder if I was “too much” or too weird. In a lot of social situations, I am quiet and I do not say much. Many people assume this is just my personality, but it is not. There are several reasons why I may be quiet in a given situation:
I may not have enough energy for verbal communication.
I may be unsure of what to say.
I may be uninterested in the topic.
It may be difficult to keep up with a group conversation. They might move on to another topic before I can process what was said and generate a response related to the previous topic.
It may be difficult to focus on one conversation when I can hear multiple conversations happening at once.
It may be difficult to verbally express thoughts when dealing with intense sensory input.
Being more of a literal and analytical thinker, it is difficult to provide quick responses in the moment. I may need time to process information, sort through my thoughts, and decide on an explanation. If I do not have that time, I remain quiet.
This is all happening internally, while onlookers assume I am shy or quiet. This is why the DSM-5 criteria for autism are flawed. This is why academic or educational courses about autism are flawed. Professionals are taught to look for external, observable indicators of autism, with no regard for or understanding of the autistic person’s lived experiences.
I am sure my family member enjoyed our time together as much as I did, but that does not stop me from wondering how well I communicated. Because somewhere at some point in time, an arbitrary set of social “rules” were decided upon (by the neurotypical majority). These rules are considered the “correct” way to communicate because autistic kids that do not follow the rules are placed in social pragmatic therapy or social skills training to teach them the “right” way to do it. Autistic adults that do not follow the rules are labeled as rude, blunt, awkward, or self-centered. Others are aware of the rules early on and start masking to blend in, but this comes with a cost. Masking is not deceit, it’s an attempt (often subconscious) to appear less autistic to avoid judgment and discrimination. Many autistic people do not realize how heavily they are masking until the mask is too much and they fall into burnout.
It is because of these arbitrary “rules” that I am always questioning my communication abilities and pressuring myself to “do it right.” Autism is still primarily viewed as a disorder, something to be fixed, an unacceptable deviation from the norm. Even though I did not have any kind of therapy as a child, I still learned the rules and tried to follow them. Being aware of the “rules” does not alleviate my social anxiety, it only allows me to mask that anxiety and blend in. It is because of neurotypical expectations that I feel like I am always performing, and it is exhausting. Only now as an adult, am I learning to put my needs as an autistic person ahead of others’ expectations for me (and it is not easy). I communicate much more effectively and easily when I am connecting with someone over shared experiences or interests, when I’m in a minimally distracting environment, or with one or two close friends. Processing information and expressing my thoughts become more difficult when I am striving to meet neurotypical expectations. I think this is probably the case for many autistic people, yet autistic children are still taught to communicate “appropriately” based on neurotypical communication styles. They are taught to mask their true autistic identities, which is damaging to their mental health and causes negative self-perceptions.
It is not okay to keep forcing autistic children into social skills training. It is not okay to tell them to stop talking about the things they love and know so much about because other kids do not want to hear it. It is not okay to teach them that they have to adapt to everyone else’s expectations to be accepted. Autistic communication is a cultural difference that should be understood and respected. Neurotypicals (especially SLPs) should be working just as hard to understand autistic communication, as autistics are to understand neurotypical communication. We are not disordered just because you do not understand us. If there were more autistic people than non-autistic, neurotypicals would be the minority. Society’s idea of “normal” would be based on autistic ways of thinking, communicating, and living. The world would be accessible to us. Neurotypicals would be the ones having to adapt, understand autistic people, hide who they are if they want to blend in, and maybe even receive social skills training to appear autistic. If autistic people were the majority and made no effort to understand neurotypicals, but instead said, “you need to change and be like us,” how would you feel? This is exactly what happens to autistic children and adults.
Instead of teaching autistic children to mask and change who they are, let’s help them understand neurotypical communication while simultaneously embracing their true autistic identities. I’m proud to be autistic, and autistic kids deserve to feel that too. They deserve to know about their autism diagnosis and to connect with other autistic people, without therapists, teachers, parents, or peers forcing them to be someone they are not.
SLPs, here are a few tips for respectful and functional pragmatic language therapy to get you started:
Learn about communication differences from autistic adults.
Learn to view autism as a lived experience, a culture, and a normal variation in human neurology (neurodiversity).
Learn how to implement non-ableist pragmatic language therapy.
Advocate for autism acceptance, understanding, and empowerment (teach other children and professionals about autistic differences).
Teach autistic children and their non-autistic peers that people communicate in many different ways, all communication is valid, and there is no “right” way to think or communicate.
Do not impose neurotypical expectations on autistic children (such as eye contact or whole body listening); honor and validate autistic communication.
Do not force social interaction for the sake of being social.
Encourage discussions about specialized interests and create opportunities for autistic children to connect with others that share similar interests.
Teach self-advocacy skills.
Teach perspective-taking skills but do not force neurotypical perspectives on autistic children (we need out of the box thinkers).
Always provide access to and model AAC (for both speaking and non-speaking children).
Originally written for and published by the Therapist Neurodiversity Collective.
Kaylen Randall, MS, CCC-SLP received her degree in speech-language pathology from the University of Louisiana at Lafayette. She is an openly autistic SLP and owner at Randall Therapy & Wellness in Pensacola, FL. Kaylen specializes in aphasia, literacy, developmental language delays, and neurodiversity-aligned support for autistic individuals. Additional information about Kaylen and her practice can be found at www.facebook.com/RandallTherapyandWellness.