I exist in a fairly airtight echo chamber, talking to dozens, if not hundreds, of autistics every day. Within this environment, it’s easy for me to forget that most people don’t know much about autism, and that what they do know is often outdated or informed by bad cultural stereotypes.
In hopes of squashing stigmas, saving friendships, and building bridges between neurotypes, I’m here to address non-autistics and tell them a few things we wish they would take the time to learn about us.
We are not “all on the spectrum”
Often, when we tell someone that we are autistic, there is a brief pause while the person we are telling calculates their reaction. More times than you would guess, that reaction is, “Well, we are all somewhere on the spectrum.” This reaction is inaccurate and, actually, very hurtful. If all people were on the spectrum, it would be useless for anyone to tell anyone else that they are autistic; being on the spectrum would just be another way of saying “hey, guess what, I’m also human!”
When being given the news that someone in your life is autistic, saying “we are all on the spectrum” invalidates the news you are hearing. It’s a way of swatting away the cognitive strain of trying to understand your friend with a new lens. It is a depressing reaction to encounter, because it invites no further conversation, but simply shelves what you said so that the conversation can go back to the stock market or sports.
Being invalidated and misunderstood are chronic issues for autistics. The prospect of these things repels us from people in our lives. If you tell us that “we are all on the spectrum,” most autistics will pull back for their own safety; they will protect themselves from you, and protect themselves as they move forward.
Autistics have a spiky profile
The concept of the spiky profile is something that autistics tend to be aware of and one that beguiles non-autistics. Simply put, the spiky profile refers to the different strengths and challenges of an autistic person, as they tend to vary in surprising ways when compared to neurotypical development. We can be fantastic at some things and come across as neophytes in other ways. Of course, this is in relation to a standard that is, ultimately, arbitrary; it’s based on the idea of a “well-rounded” person, where fluency in one domain is predictive of fluency in another.
The spiky profile means that you may see your autistic friend, family member, or coworker perform really well at some tasks of theirs, and then fall flat on others. You can see them devour books, solve equations, or speak and write in articulate and erudite ways, but then misinterpret a conversation, have a public meltdown, or screw something up at work. When these juxtapositions happen, we are usually met with, “You know better than that!” But, honestly, we often don’t.
The spiky profile describes our position “on the spectrum.” The spectrum is there to tell you that we present in many different ways, and the spiky profile is the specific way in which our autistic traits are embodied. If a friend or loved one tells you that they are autistic, you need to understand that your perception of the person should not inform your reaction to this information. What I mean is, avoid comparing this person with an autistic person in your life that you see as being the template for autists. Your cousin, your uncle, your grandma, or your coworker who may have displayed more outwardly obvious autistic traits is not the standard from which to generalize about all other autistics.
We are a marginalized group in crisis
Lots of times, even a therapist will say something like, “I don’t see why you need accommodations or a diagnosis; you’ve come this far!” But they have only seen what we have shown them. It’s called masking because it cloaks the underlying difficulty of living as an autistic person in a neurotypical world. They don’t see the tears, the exertion, the panic, the anxiety, or the fact that we feel like we are falling apart. We have strained ourselves to “get this far,” and we would like the strain to ease up.
Late-diagnosed autistics’ unemployment numbers are hard to nail down, but estimates don’t paint a happy picture. Some articles estimate that 40% of us are unemployed, and others guess it at 85% unemployment. Even on the low end, it’s ten times higher than the average unemployment rate. When autistics do have a job, they often struggle to keep it; having trouble fitting in, feeling comfortable, and managing workplace relationships, all while being relatively blind to the impact of social hierarchy, is a volatile combination in our current system.
Very few people come to me and say, “Everything was going so well, my luck was so good, I figured that I must be autistic!” It’s usually a pattern of problems at work or home that brings autistics to me for coaching. It’s not just jobs. Depression rates are higher, anxiety rates are higher, and suicide is nine times more likely to take a late-diagnosed autistic’s life than it is a neurotypical’s life. It isn’t a biological handicap; it’s a social one, and it could be fixed through social change. But we rarely encounter people willing to make those changes.
Autism can enrich our lives and make it beautiful and fascinating, even during mundane activities. But we rarely get to sit back and enjoy it, we are so busy trying to keep up and trying to hide. We would love for non-autistics to make a sincere effort to educate themselves and help us change the environment for this small percentage of people who just want to be accepted and understood.
