The Autistic Self – Reframing Ideas of Pathology

Read in Spanish: El Self Autista – Reformulación de Ideas sobre la Patología

A bird just flew into my window. We live in a house on a small hill, with trees on both sides. It is peaceful, with feeders stocked with seeds, berries and meal worms. The birds love it here, but despite being an almost perfect setting, they sometimes fly into the windows. Stunned and confused by a danger they couldn’t even see, they sit a while, waiting for the unexpected shock of what happened to pass. This is what life is like for an autistic person.

For me. I am familiar with these windows and have collided with them many times. My days are fraught with unknowns like this. I am hardwired to miss cues of safety, despite my nervous system sounding an alarm at various volumes, thanks to misfiring neural connections. As an IFS Practitioner specializing in working with autistic clients, I both witness and share the experience of what life is like for those of us on the spectrum – the confusion, exhaustion, and isolation we feel as we navigate our way through the world. “Misunderstood” is imprinted on the psyche of every autistic person I have met.

When I was first writing this article, I asked my autistic daughter why it’s important for anyone working with Autism Spectrum Disorder (ASD) clients to know what autism is. She said simply, “because we’re aliens, and they need to know that most of what they say isn’t going to make sense to us.” This is a succinct answer delivered with absolute certainty by a twenty-two-year-old, who went undiagnosed for 17 years, and struggled every single day. My daughter has also worked through four therapists before finding one who is open to learning how she needs to be talked to.

A second, equally good reason is that according to the Center for Disease Control, autism is now the most diagnosed developmental disability in the world, making it likely that you currently work with, or will work with, someone on the spectrum. In fact, it’s likely that around 2% of your clients are autistic, even if they don’t know it yet. Autism is a neurodevelopmental disability that affects the shape, structure and connectivity of the brain.

To be diagnosed as autistic, one must meet five of seven criteria that include difficulty with social relationships, repeated and repetitive behaviors, and sensory issues. Autism is a cluster of traits, a constellation of characteristics that bring varying degrees of difficulty to daily life. Internal Family Systems offers us a way to connect with Parts that have been created around the autistic experience. But autism is not caused by Parts.

IFS is described as a non-pathologizing model, meaning the person is seen as more than their diagnosis. In theory, this is a lovely idea that helps avoid stigmatizing and self-limiting behavior. But non-pathologizing causes its own set of problems by directing the practitioner to ignore biological causes for behaviors, setting up the expectation that everything is caused by Parts and therefore can be changed. This is simply not true and not everything needs to be changed.

Failing to recognize, understand and consider the autistic experience leaves the autistic person feeling more isolated and misunderstood. Autistic people are certain of a few things, one of which is that we experience the world completely differently to non-autistics. We know we are different. We know who we are. We know that our autistic Self-energy vibrates at a different frequency, that we see and hear and smell and feel things differently. We have different needs.

Ask any of us and we will all say the same thing – we have always known. The diagnostic journey to understanding why is painful and requires much work on the part of the autistic person. We face stigma and shame and work hard to soothe our Parts that are told they will be rejected by others should they find out. It takes courage to look for a diagnosis of a condition that will make people question who you are. Instead of drawing closer, people often back away when they find out about our autism, as if they suddenly don’t know how to engage with us. Or we will be told things like “everyone’s a little autistic” or “we all have autistic Parts.” No. That is not the case.

I lovingly invite you to get curious about what it is about autism that makes you want to say those things. Would it feel right to say to someone from another marginalized community “we’re all a bit brown” or  “everyone is queer”?

Ignoring our diagnosis ignores our experience and the effort it took for us to get here. By including our diagnosis, you can inform your work, making it richer and broader, allowing the autistic client to feel truly seen. For many of us, this is the first time. The founding principle of IFS is the belief that we are multiplicitous – born into this world with Self energy, adding Parts along the way in various roles. Inherently unique to each individual, Self is a loving and wise leader, experienced in many ways and characterized by words like compassion and curiosity. Self-energy is calming, deeply healing and offers this to a system that has had to adapt in order to survive.

In an autistic person, Self is autistic. Autistic Self will be impacted by the sensory information flooding in from the environment and could be taken offline by a noise or a smell. It may respond in short, matter of fact language, that can seem uninterested or lacking in compassion. Autistic Self needs to be spoken to clearly, without abstracts and too many words, or it may not understand you. Autistic Self may not recognize what is happening in the emotional world of themselves and others. It might need some help to describe feelings. For some, Autistic Self does not like to make eye contact, and can appear disengaged or dissociative. In a session, Autistic Self might need to use stimming ( a repeated and repetitive behavior often involving the hands, fingers or legs) to feel calm. Would you be able to recognize these things as being part of the autistic experience and invite them in, without thinking Parts were taking over the system?

The non-stigmatizing lens of IFS can hold great value when used in conjunction with critical thinking. Allowing a client to see themselves as more than their symptoms or behaviors promotes confidence and offers hope that things can change. Idiomatically, pathologizing has become synonymous with stigmatizing – what happens when we treat others differently, as a result of their diagnosis or consider them abnormal. The historical context of pathologizing carries its own legacy burdens that have come from the loss of control and autonomy often seen with the treatment of psychiatric disorders. For autistic people this includes eugenics, institutions and heavy burdens of stigma and shame.

But there is an important distinction between the harmful aspects of pathologizing and allowing a diagnosis to inform our work with clients. Including the ASD diagnosis offers an opportunity to empower – broadening and deepening the connections both of the practitioner to client and the client’s own internal system. Understanding the physiological needs, wants and limitations of your client is fundamental to the relationship.

Reframing pathology as providing a diagnosis to someone who has always known they were different, but didn’t know why, is a powerful thing. Gnosis is the Greek noun for knowledge, and knowledge should be power in its most accepting form. The IFS model would only become more relational by understanding the daily lived experiences of autistic and other neurodiverse people. Though the whole-person, healing, transformative approach of the IFS model uses a wide-angle lens that allows us to be with, and learn to accept, the multitude of Parts inside us, it is the lens of a neurotypical person. When the ordinary, lived sense of Self is talked about and described by the 8 C’s, to whom are they referring? When the qualities of Self are discussed, it is important to consider the mind within which these experiences take place. My connection to Self would not be considered ordinary and is unlike the majority.

How do I explain that I cannot keep my connection to Self because an air conditioner is humming loudly and the sounds that represent cues of safety have been drowned out? Or that my connection to Self is strengthened by following the same routine every day and knowing exactly what is expected of me? A more inclusive approach would allow those working with the IFS model to define the experiences that connect us to Self from a place unique to each of us. It would include all the experiences that soothe, ground, and make up our essential quality of Self, not just those witnessed by a neurotypical brain.

For those of us who are autistic, our lives consist of some form of daily experience that serves to remind us how different we are. As an autistic person I experience life as something that happens to others. I watch from the outside, through a window. I gather information through my senses first, and from people second. When I walk into a room, I am flooded with sensations and colors. I am aware of every shape and line. I see patterns everywhere. Square. Circle. Rectangle. Purple. Yellow. Blue. Straight. Curved. Cold. Warm. Square. Circle. Rectangle. Everything registers.

My autism also allows me to feel joy and wonder in the smallest things. Being outdoors in nature, particularly at dawn or dusk, is almost overwhelming in its beauty. The air feels full to the brim with life, sounds and gentle motions. The light coming through a tree, or a bird on a branch reinforces my connection to the world and reminds me that although I am on the outside, I am not alone. Since I was a child, I have been soothed and grounded by these sensory rich moments. An open window in the summer allowed warm air to brush my arm as I lay in bed, lulling me to sleep. These are just some of the ways I connect to Self.

Autistic people bring a unique perspective to the world of Internal Family Systems with our quirks and oddities, one that can enrich and expand the model. My own diagnosis of autism has provided a comprehensible language for my relationships with people. It allows me to show up for my clients in meaningful and authentic ways. My diagnosis has given me a landing space.

From that place, IFS has allowed me to find a deep acceptance of what makes me me. I have always known I was an outlier, a word I use to locate myself on a map, populated by people who instinctively understand how to be in this world. But now I am happy on the outside, witnessing everything, hearing, feeling and seeing it all. For me, the view from out here is a beautiful one.