Autism Interview #116: Shannon Hughes on Disclosure, Late Diagnosis, and Socialization

Shannon Hughes is a writer, designer, and autism advocate with a special interests in autism research. Shannon currently co-hosts the podcast Not Weird, Just Autistic with fellow advocate J.R. Reed where their goal is to promote autism acceptance by removing the barriers – practical, ideological, legal, and social – that marginalize and isolate those with autism. Last week J.R. shared some of the different facets of their advocacy work. This week Shannon discusses issues related to disclosure, relationships, and socialization.

You were diagnosed later in life than many individuals are today. What led you to pursue a diagnosis as an adult?

Like JR, I always knew that I was different from most people, but it wasn’t until the cumulative stress of life events and health issues interfered with my ability to function in daily life that I sought out a psychologist who could diagnose ADHD so that I could give medication a try. I already had a diagnosis of depression, but antidepressants weren’t enough at the time. He also diagnosed OCD and, in reading about those two things, I kept coming up with information on autism, because they’re all “autism spectrum” conditions. The more I read, particularly about women with autism, who are very different from their male counterparts, the more I saw myself and my family members in the descriptions of people on the spectrum. I pursued a diagnosis of ASD through a referral from my psychologist to a neuropsychologist who did a battery of tests and confirmed ASD.

Is autism advocacy a full-time job for you right now? If so, how did you get to this point professionally (In other words, how did you realize this was what you wanted to do and how did you make it happen?) If not, how do you balance your advocacy work with other professional obligations?

I’m at a major crossroads when it comes to autism advocacy. I was diagnosed a couple of years ago, though I began researching autism about four years ago. Most people who I’ve met over the years don’t know I have an autism diagnosis. I was able to compensate for most of the issues I deal with in terms of my autistic traits until I got old enough for health issues to interfere. I was always happy to work late and come in early, to double check my work, to rest up before and after intense social situations so that I could return to a baseline of functionality as soon as possible, etc. As I’ve developed some very unpredictable chronic health problems, I haven’t had the mental and physical resources to maintain that ability.

I worked full-time up until this year (in administrative and office management positions), but I’m going back to school for a degree in Graphic Design, something I’ve always loved doing, because it’s something I can do on a freelance basis and work around my fluctuating stress tolerance. I’m really excited to get to use the skills I already have in that area for Not Weird Just Autistic and develop more of them to use on a freelance basis. I don’t know if it will always be my primary focus, but I feel very strongly about it, and it will always be a major part of my life.

You recently wrote an article about a positive relationship you are in. What are the primary contributing factors to making this relationship (or others between individuals on the spectrum) successful? 

There are so many things that make relations for people on the spectrum. All relationships are built on people’s ability to communicate and understand one another. Not all people on the spectrum have the same difficulties with communication, and many of us actually do possess social skills, so I always like to emphasize the need to avoid stereotypes about our ability to interact and socialize. That said, “social deficits” is the defining diagnostic feature of autism, and we all have issues with it. It can be a big challenge because no two Aspies have the same communication issues, and it’s not like deaf culture where a group of people who are deaf or hard of hearing use sign language to communicate with one another. Two people with autism each have to learn the other’s language.

The wonderful thing about being in a relationship with someone else on the spectrum is the understanding we both have that relationships are difficult, that we have to work hard to communicate, and that things like anxiety and depression are always going to affect both of us. We know better than to expect fairy tales, but just having someone who deals with so many of the same issues and is accepting of my idiosyncrasies (which are legion), and appreciative of my unusual skills and talents, is a little bit of a fairy tale. That makes us both very grateful, and having gratitude and respect for one another is a priceless gift to any relationship.

Your recent podcast mentioned the issues around disclosing autism to healthcare providers. Based on your personal experience, has disclosing autism been positive or negative? Do you have advice for when or how to disclose?   

I am always torn on when to disclose my diagnosis to health care providers. I’ve had two primary care providers who attributed my physical symptoms to mental health issues, and I am always aware that I have to prove that I’m calm, rational, and well-informed in order to have access to the referrals and tests that I need. Before I had diagnoses of anxiety and depression, my doctors ordered tests for me without hesitation. After those diagnoses as well as a diagnosis of ASD, I have had to argue my case like I’m in front of the Supreme Court and/or change doctors to get referrals. I had one primary care doctor tell me that back pain and fatigue were manifestations of anxiety and depression. Two primary care physicians and several specialists later, three other conditions have been found that can account for fatigue and back pain. One of them, generalized joint hypermobility (essentially Ehlers Danlos), is very rare, but more common in individuals with autism.

In another instance, when a medication gave me symptoms that included very scary side effects like loss of balance, vision, and coordination; and difficulty breathing, those two were attributed to anxiety. After about six months of that, I decided to quit taking it, and they went away.

So, any kind of mental illness, makes a person less likely to have access to health care practitioners who take them seriously. And often, we ourselves are so demoralized from dealing with things like anxiety and depression that we don’t have the confidence to advocate for our physical health, too.  If you throw in a diagnosis that connotes intellectual disability, like ASD, not only is our rationality questioned, but so is our mental capacity. At best, it leads people to suffer from health issues that could be treated. At worst, it leads to undiagnosed physical illnesses that are degenerative (heart disease and diabetes for instance) and dramatically shorten life expectancy.

On the other hand, disclosing carefully can help. To have a cardiologist do an echocardiogram, I had to explain my concerns about joint hypermobility and various non-specific cardiovascular symptoms, trying not to create the impression that I’m a hypochondriac (when my medical records are filled with complaints of anxiety and depression). Explaining that I also have a developmental disability, which supports a greater likelihood of having heart complications, does not, in the mind of medical professionals, support the likelihood of a patient being capable or informed for medical tests.  But I waited until the end of the meeting so that I could demonstrate that I am informed and capable, before requesting the test, which he ordered.

What was it like living as an adult without a diagnosis?

Being an adult on the spectrum who was not diagnosed in childhood is very lonely, confusing, and isolating. If you’re employed full time, you’re using all of your energy, all of your mental and emotional resources, to function in a neurotypical environment. I was good at it, but I didn’t have anything left over for relationships or developing a support network. That’s a very difficult way to live.

However, I think the hardest thing about being an adult who wasn’t diagnosed until later, is the cumulative effect of a life spent feeling different, of not being able to do things the same way other people do them, of not seeing things the way other people see them, and of the interpersonal trauma that comes from being in situation after situation where you don’t know how to manage the stress or take care of yourself. Chronic invalidation in work, school, and personal relationships is extremely destructive, but also, people on the spectrum don’t have the same instincts for protecting themselves as the average person. It leads people into unhealthy relationships, frequently abusive ones, as well as situations where they encounter victimization of various kinds. By the time I had a diagnosis of ASD, I had been through things that would undermine the ability of the most functional, capable person who never had a developmental disability. It takes a serious toll.

What mistakes do you see well-intentioned neurotypical individuals make?

I worked for a few years in the Disability Resource Center at Missouri State University in Springfield, Missouri, and I have to start by saying that everyone, no matter how informed they are, makes mistakes about what people with various disabilities are capable of. People with autism are such a heterogenous group, even medical professionals who work all day with people on the spectrum are prone to making incorrect assumptions. I would say that the biggest mistake anyone can make about someone with a disability is to assume anything about their level of functioning in any area instead of asking the person directly about what they feel capable of.

I recently worked with an individual who specialized in assisting people on the spectrum in finding employment. She was used to working with people who are lower functioning than I am. When we encountered one of her coworkers, she assumed that I needed coaching in introducing myself, and asked me, in front of him, like I was a shy first grader, if I was willing to introduce myself. I have decades of experience in interacting with people in a professional environment, introducing myself, and promoting myself professionally. My social skills are well-rehearsed and better than that of many “neurotypical” people, though they are exhausting for me to practice. When I want to introduce two people who do not know each other, nor do they know why they should know each other, I introduce both of them.  I didn’t want to be rude, so I introduced myself. When he left, she thanked me, in the most patronizing tone of voice possible, for allowing her to “challenge” me. I wanted very much to “challenge” her with a lesson on what social behavior she was practicing which was down-right insulting to someone with autism, but it had already been a long day, and I wanted to go home. The bottom line is, it’s important not to make assumptions, and to treat people with disabilities with the same respect and consideration as you would anyone, unless you have concrete knowledge that they need anything else from you.

What are some important factors to raising a child with a positive autistic identity?

I don’t have any kids, so my advice here should be taken with a grain of salt.

I would ask all parents to treat their children with respect and validate their experiences even if they don’t relate to their children. Children with autism encounter more barriers, more frustration, and more situations which overwhelm them than typical children. They have more needs and those needs can be difficult to meet, I’m sure. I would stress that people on the spectrum tend to have difficulty expressing their feelings, and it may not be obvious that they experience rejection and alienation as intensely as they do. Do not tell your child that they are being oversensitive, that they are overreacting, or that what they think or feel is weird. Do not assume that they are inconsiderate or that they are being intentionally rude or selfish. Children with autism, diagnosed and undiagnosed, often get their first experiences with invalidation at home, sometimes from loving parents with the best possible intentions, who just don’t recognize that a kid who seems robotic and disinterested in the world around them, nevertheless, is very sensitive and vulnerable.

I would just like parents to realize that, while they are just trying to get through the day, everything they can do to make their kids feel accepted, loved, and validated, gives that kid the resources to believe that they are worthy and lovable when they grow up and have to deal with a world that will not automatically accept them as they are. As children grow up, they will learn more acceptable behavior, but they will have a much harder time learning to value and accept themselves. Try to give them a running start at that so that they’ll know what to look for in friends, coworkers, and life-mates. It’s priceless.

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