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6 Things That Are Important To Know About Your Autistic Friend

by Jennifer Regis

April 12, 2022 738 views
 

6 Things That Are Important to Know About Your Autistic Friend

By Jennifer Regis

My name is Jennifer. And we can be friends.

You should know I am diagnosed with ADHD and Autism. I am by no means an expert in any of these disorders, but I have lived with them a long time and here are the things I think are important to know about me if we are going be friends.

I don’t see autism and ADHD as wholly negative things

The term “disorder” just means a collection of symptoms. These symptoms let me know that I think, experience, and perceive the world around me differently than you do. Some things do cause distress like loud noises, bright lights, chaotic environments. Some things calm and soothe me like loose clothing, rubbing my head or gently rocking. Sometimes, it is hard to put into words what I am feeling. Sometimes, all I want to do is describe the rich inner world I have created in my head. People can be afraid of labels out of fear that it gives others more ammunition to discriminate, exclude and hate. For me, it has been liberating to finally have language to explain my experience of the world. Yes, I have had major struggles because of my autism and ADHD, but they are also the source of my biggest strengths. So, I don’t want you to cure me or feel sad about the fact that I am autistic and I have ADHD. All I ask is that you help me to advocate for the accommodations I might need, love me for all of who I am and help me navigate the often confusing and chaotic neurotypical world.

Autism and ADHD presents differently in different people

For 35 years, ADHD and Autism were not even on my radar as issues for me because I could sit still and I did not act like, say, Dustin Hoffman’s character in Rain Man. There are a lot of stereotypes around autism and ADHD and only certain representations are presented in media. This means that sometimes people do not believe us when we say we are autistic. I think this stems from the fact that historically, autism and ADHD were diagnosed mostly in young white boys. Many of the initial studies and much of the diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders (the DSM for short) are based on the presentation in this limited population. Also, the medical bias that we are aware exist in other specialties occurs in psychiatry as well. Many Black children are misdiagnosed with things like schizophrenia, personality disorders and oppositional defiance disorders (ODD) if they get a diagnosis at all. Mostly, we are labelled as defiant, defensive, lazy, or incompetent. Inattentive ADHD presents differently than hyperactive ADHD. The way adults present is different. The way people of color present are different. The way women present is wildly different. I am not an 8-year-old boy. I am a 40-year-old woman. It may be helpful to think of autism and ADHD symptoms occurring in a cluster or cloud and each symptom having a range of presentation rather than a linear spectrum of “low functioning” to “high functioning.”

I mask heavily, but it doesn’t mean I’m not struggling

When I was young, I was a sponge for new information, and I would be eager to share any trivial fact I found interesting with anyone and everyone who would listen. Unfortunately, I learned that info-dumping = no friends. We seek acceptance and safety, so we learn to hide our neurodivergent traits as a means of self-preservation. Sometimes, it is a conscious decision, but many times it is unconscious learned behavior. We may be able to copy neurotypical behavior to the point that our traits are no longer obvious, but we still feel the effects internally and this can be mentally, emotionally, and physically exhausting. Masking is like code switching in many ways and neurodivergent people of color often must do both. This can sometimes add another layer of complexity and even trauma to the neurodivergent experience. Masking in primarily white social environments is often more crucial to survival than cultural environments, and we can often struggle to socially connect to our culture and therefore feel disconnected from both environments. I am learning to unmask in safe spaces, but I still struggle with my sense of identity.

I want you to learn about meltdowns, shutdowns, and burnout

Meltdowns and shutdowns can be debilitating for autistic people. They are not tantrums. They are not a choice. They are not something we can control. They are often the result of being extremely overwhelmed, but there are different triggers. I tend to shut down when faced with sudden or severe emotional distress, like emergencies at work or fights with a significant other, and this was interpreted by others as the silent treatment or stonewalling and I was labelled cold or difficult. Please know that if I go quiet, I most like feeling overwhelmed and I will need help to a quiet, safe space to process and decompress. Burnout can be the result of long-term stress, overwhelm or masking and can look like depression, panic disorder, generalized anxiety, issues with executive functioning and sleep problems. This can take months to years to get relief from and some of us may not be able to return to the same degree of function that we use to take on.

We communicate differently

If you have ever read The Four Agreements by Don Miguel Ruiz, you know the First Agreement is “Be Impeccable With Your Word.” This is how I communicate. I prefer direct communication. I try to be as precise in my language as possible so I can understand and be understood. While I can understand subtext, subtlety, and innuendo, it is a skill that I’ve had to study and develop. It does not come naturally. My first instinct is to take what you say at face value. This has gotten me into some sticky situations on more than several occasions. On the other side, direct communication is often times interpreted as being rude or disrespectful. If ask why you want me to do something, know that I am trying to gain clarity and understanding. I am not questioning your authority or intelligence.

Diagnosis for autism can be…difficult

I am currently saving for a professional assessment for autism. I started with listening to personal stories and exploring online communities and found that their experiences sounded a lot like mine. I felt understood. The language made sense to me. The lessons I have learned brought clarity to childhood experiences. I was pointed in the direction of reputable self-assessments. I took a total of twelve different assessments. Based on the scores, there was no question that I was on the spectrum. In the US, it can cost $3000-5000 and the waiting list for assessments are months long. The assessment process itself can be arduous and potentially traumatic because the diagnostic criteria for autism are based on external observation of traits, i.e., your forced to unmask in front of a stranger. In many autism support circles, self-diagnosis is seen as valid, mainly because there is nothing to be gained from “faking” autism. There is still a stigma. There is no medication to be abused. There are few resources for adults and the resources available, like work accommodations and specific management strategies, are not finite. In a study released in September 2021, many clinicians noted while social media may be problematic because a lot of women are going into their assessments already having extensively studied autism traits, most of the time they self-diagnose correctly because they meet other people that are autistic and they can identify with the struggles the other person is having and can internalize that and apply that to their own lives, so they are able to self-identify. I too believe self-diagnosis is valid and I manage my life as an autistic person. I have more grace and compassion for myself than I ever have before and this shift in perspective has improved my well-being. Still, there is a part of me that wants the psychological feeling of validation from a professional diagnosis. I do not know that there is a right answer on this for everyone, but there will be answer that feels right for you.

Resources

Here are some resources I’ve used that may be helpful for information and support

http://www.embrace-autism.com

http://www.neurodivergentmagic.com

http://www.inclusivetherapists.com

 

 

 
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Jennifer Regis
Just a Black *ahem* geriatric millennial embarking on her second act as an essayist and poet. Musings from the Uncanny Valley served up fresh.

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