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Autism Interview #86: Gord Gates on Late Diagnosis, Marriage, and Advocacy

Gord Gates is a Canadian author, mental health counselor, and Autistic activist. Gates’ new book, Trauma, Stigma, and Autism: Developing Resilience and Loosening the Grip of Shame offers a unique framework for combating the psychological and emotional impact of stigma and creates a brighter path for anyone who’s been made to feel like an “outsider.” He says stigma is a form of trauma and shows how trauma in various forms can create difficult emotional challenges. He describes how autism can help us better manage these challenges as it provides insight into the nature of stigma and helps us counter the automatic reactions that often stigmatize others. This week he shares his experiences growing up without a diagnosis and how parents and educators can better support Autistic children and adults.

You were diagnosed with autism late in life, and experienced childhood and some of your adulthood without a diagnosis. What was this like? How did your family support (or fall short in supporting you during this time)?

I wasn’t diagnosed until the age of 44. There was no group I knew of that I could identify with in terms of better understanding the challenges I faced or even more important process the kind of stigma I experienced from others. I was always the outcast, never felt included, and never knew what to say. I would remain silent, not listening, but waiting for an opportunity to contribute somehow. Invariably, I would blurt out the wrong thing at the wrong time and get disapproving looks that reinforced how stupid I felt. Various kinds of invalidation trauma, not only stigma, but developmental factors like an alcoholic father who abandoned the family and a mother unable to be emotionally available on a consistent basis, added to my perceived lack of safety and dysregulation. I was emotionally escalated much of the time, which only added to my isolation.

Everyone in my family had anxiety. They were afraid of life for their own reasons. I got away with staying alone in my room most of the time listening to music and rocking. I would fantasize about being in a “normal” family like on TV. What I really needed was to explore what I was experiencing, know there were others facing the same challenges, and find a way to feel less like what Temple Grandin famously called “an anthropologist on Mars” with no peers. Certain authoritative adults who took advantage of my naïve need for validation to take advantage of me for their own gratification certainly didn’t help.

There was no diagnosis to make for me when I was young. Even now lots of people reject the medical establishment or decline diagnosis for their own reasons. People may experience challenges on a “sub-clinical” level and not qualify for medical diagnosis. Parents may not want to admit a child of
theirs is anything less than their own image of perfection and not seek diagnosis or even support their children to better understand themselves.

That’s why my book talks so much about an alternative to diagnosis and provides different ways for people to identify with the kind of stigma that happens when a person has some kind of autisticy that makes them feel different and unable to fit in.

Your bio mentions that you felt safe at school. What did your teachers, peers, parents, etc. do to make you feel this way?

I had teachers who spent time with me after school to give extra help and provide much-needed emotional validation. These teachers were godsends, like my grade two teacher who introduced me to her father when he picked her up at the end of the day and we were still working. My grade three teacher supported me by giving me extra time to do projects in my own way and even let me hand in late projects to her at home. These teachers took the time to attend to me as a lost person and help me feel worthy.

Autistic people may enjoy long periods of self-absorbed activity but often have the same or even greater needs for the safety of accepting emotional connections. On my journey as a child I learnt ways to attach to people almost instantly. This carried through to adulthood and is still something I have to manage. It has led to boundary issues and wrong messages that have been one of the main issues in my marriage.

There were lots of teachers who counter-acted the good ones. My grade four teacher put my desk right up beside hers so her back was to me as she taught lessons. This was supposed to address my “behaviours,” which were really attempts to compensate for not fitting in. In that grade I had the “fleas,” which the other kids passed around to each other. The teacher encouraged this bullying with her own oppressive behaviour. Another teacher used to put me out in the hall, and one time a teacher I didn’t even know was walking by. She looked at me and said, “Is that all you’re good for?” What an effective way to confirm someone’s low self-esteem. No, I didn’t feel safe in elementary school.

In high school I felt safe because I played sports (I was a big healthy guy and coaches recruited me). In university I felt safe because my professors gave me lots of positive feedback, and I loved exploring philosophy. At that point, school became a protection from having to make it in what I perceived to be a cold, hard world where I didn’t belong. I didn’t study to achieve a specific goal, but because it gave me a safe role in life and a sense that I was at least doing something.

Still, my studies led to possibilities later that allowed me to do work I loved. We never know what will come of doing what feels right to us and staying true to our own passions, even when the people around us don’t understand or create barriers for us.

You’ve mentioned that you sought help for issues you were having in your marriage before your diagnosis, but “nothing helped.” Why couldn’t a professional pinpoint anything at this time? What types of unhelpful advice were you receiving?

One of my Autistic research participants said finding someone to love who doesn’t judge you or take advantage of you and loves you back is like “winning the lottery.” I never knew how to relate to people, never mind the ones I had a sexually charged attraction towards. My wife was the first woman I felt truly safe and at home with. She is not on the spectrum in any medical or self-identified way, although I don’t know if she considers herself neurotypical (you’d have to ask her).

In my book I introduce the terms socioconventional and sociophenomenal, exploring a concept called sociophenomenal diversity to help visualize these dimensions of difference in an experiential non-pathological way. My wife is socioconventional as she is able to ascertain people’s intentions, know when they are playing games, can establish appropriate boundaries with confidence, and seems to intuitively understand how to have a desired impact on others. These are abilities that seem to escape me when it comes to the general run of social interaction. I am much more comfortable in my counselling practice establishing a therapeutic one-on-one connection with individuals. I know what is expected and what my specific role is.

I felt profoundly connected to my wife right from the start without wondering how to act or feeling like I had to pretend. That’s the kind of relationship worth waiting for!

But I was not able to make her feel like I was connected to her because of the challenges of autisticy (self-absorption, difficulty appreciating other perspectives, frequent melt-downs, etc.) I was always hurting her without meaning to. She was often angry at me, and I didn’t even know why. She would get even more upset always having to explain everything to me. The diagnosis let us both know what we were dealing with. She could understand my behaviour as a function of my challenges, and I could work to compensate for those challenges without feeling defensive as if I had to change who I was. As time went on, our work didn’t change. Diagnosis did not really make life easier for us, although it gave us more to work with.

What has changed our relationship more than anything is time, established mutuality, and the growing history of committed caring that gets us through the frustrating, challenging times. There are still plenty of those. My wife is a proficient therapist, by the way, and wrote a paper called “Living with an Aspie partner

Is your wife neurotypical? In what ways has your marriage changed post-diagnosis?

I felt profoundly connected to my wife right from the start without wondering how to act or feeling like I had to pretend. That’s the kind of relationship worth waiting for!

But I was not able to make her feel like I was connected to her because of the challenges of autisticy (self-absorption, difficulty appreciating other perspectives, frequent melt-downs, etc.) I was always hurting her without meaning to. She was often angry at me, and I didn’t even know why. She would get even more upset always having to explain everything to me. The diagnosis let us both know what we were dealing with. She could understand my behaviour as a function of my challenges, and I could work to compensate for those challenges without feeling defensive as if I had to change who I was. As time went on, our work didn’t change. Diagnosis did not really make life easier for us, although it gave us more to work with.

What has changed our relationship more than anything is time, growing familiarity, and the growing history of committed mutual caring that gets us through the frustrating, challenging times. There are still plenty of those. My wife is an amazing therapist, by the way, and wrote a paper called “Living with an Aspie partner

How did you become interested in being a mental health counselor? Do you work with clients on the autism spectrum? 

I was always interested in philosophy and felt that philosophical exploration could make people’s lives better. To be honest, I was trying to find a philosophy that would help me be less afraid, see the world as a safer place, and help me relate to people. I wrote my first Master’s thesis on the French philosopher Maurice Merleau-Ponty, who I interpreted as saying philosophy was about overcoming the barriers between each other by living authentically and honouring our spontaneous, bodily-felt connection with the world. His philosophy consisted of exploring this kind of aliveness and it fascinated me. I was not able to produce a final project in time, however, and the university granted me leave to work on it in my own way. In the following years, I did a lot of things like move to the rainforest in BC where I eventually lead drum jams, ran my own video business, helped run a coffee house, and even did standup comedy. All this helped me better connect with myself and build confidence in my ability to live and relate to others. I successfully defended a passionately written thesis almost ten years later.

When I met my future wife, I decided to apply all this hard-won confidence and returned to school to study my first love, which was helping people. My family has a history of mental health issues, and working with these has always been a passion of mine. I just lacked the confidence to put it into action until later in life.

My second Master’s Thesis was in Social Work. I work with all kinds of people, although mostly adults and adolescents with no significant intellectual impairment. Some are diagnosed with autism and many are still struggling to understand why they feel so different from other people. Some don’t understand why they experience drastic emotional dysregulation that gets triggered for the most unexpected thing. Many others struggle with issues of stigma and judgment (including most harshly sometimes their own). Various forms of what I call invalidation trauma are often at the bottom of many such problems and emotional distress.

We’re all in the same human boat doing the best we can with what we’ve got. I feel my training and experience allow me to be of service to almost anyone if I listen non-judgmentally and work with the person to move towards their own connection with themselves.

What mistakes do you see neurotypical autism advocates make?

All kinds of people who attempt to be allies with some oppressed or disadvantaged group have to be careful of the same mistake, which is assuming they know more about that population’s needs than the people they are supposed to be advocating for.

It is important to be humble, listen carefully, honour the different sub-cultures involved, hear individual voices, and make sure they are allowed to speak for themselves. In my book, for example, I wanted to advocate for people, including Autistics, who type to speak. I suppose I feel lucky for my abilities and wanted to give back to those I consider brothers and sisters who often have their own voices marginalized. I worked to make contact with such people, which was not easy, and sought their input and advice frequently. I do not regurgitate conventional “scientific wisdom” in my book, which would perpetuate a lot of stigmatizing beliefs, but tried to make these voices heard and discuss things from the perspective I encountered from them.

Too many autism “advocates” and “experts” impose their own beliefs and think they know best. I don’t want to mention any names, but various organizations are notorious for not seeking input from the people they are advocating for. In the process, they offend and further marginalize many Autistic people.

What advice do you have for parents trying to raise their children with a positive autistic identity?

As a non-parent but someone who works with lots of different people, I would say the best advice for all of us is to show respectful hospitality towards others and balance this with healthy self-care practices and boundaries. Too often people think they can tell other people what to think, how to feel, and how they should act. Parents are charged to care responsibly for their children, not try to define them or meet their own needs with them.

We have no right to judge others for who they are, not even our own children. We guide best when we allow self-expression and self-determination within clear limits. Meanness is always a damaging way to treat anyone, most especially our children. We always have to be careful not to impose our own fears and preferences on others, especially our children when they have special needs.

In my book I refer to autism (as a medical diagnosis and pathology) with a small “a.” I refer to autism as a form of self-identity with a capital “A.” I am an Autistic person. Advocates and parents who talk about autism with a small “a” need to respect those who identify themselves as Autistic and do not choose to see this in terms of pathology. This is what the neurodiversity movement is all about.

When this perspective is not honoured, it can lead to adversarial controversy. Advocates and parents alike must be aware of this and not get overly attached to the pathology model. People must be allowed the freedom to find their own identity, preferably without judgment especially from those who matter most to them.

My book Trauma, Stigma, and Autism: Developing Resilience and Loosening the Grip of Shame is just being released. It’s available on Amazon and there’s a link to it on my website. I hope people find it interesting and helpful.

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