Perspectives of an OT: My Personal Experience

Introduction 

At our practice, we celebrate the joy that can come with finding your neurodivergent identity. We recognise the importance of sharing individual stories about how identification can help with self-compassion and discovery. Here we have the unique perspective of an Autistic Occupational Therapist Katie Kerley, who alongside being the Clinical Director of Horizons Therapy Services Ltd in Dundalk is The Adult Autism & ADHD Practice's Consultant Occupational Therapist and one of our main team of trainers on neurodiversity affirmative approaches. Here she discusses her own personal experiences in an extract from our latest book "The Neurodiversity Affirmative Child Autism Assessment Handbook.

My Personal Experience

As a child raised in an accepting household of quirky people, I think I was cocooned from the feeling of being different in many ways. The security and surety of home was a haven I could always return to no matter what happened in the world outside. I was blanketed in the rhythms and routines of an environment that catered to me.

I felt it outside my home sure, but I also surrounded myself with like-minded souls who understood and accepted me. Nonetheless, stepping out of my comfort zone and into the wide open world, I often did feel that sense of being “other” and therefore I performed many roles, and was adept at code switching to fit in with different groups. I played the part of a nerd, a goth, a girly girl etc. I think pretty convincingly but then I don’t really know how it was received by people I was not close to.

I have the dual experience of having been both the assessor and the assessed, so I have been on both sides of the assessment table. This has given me a lot of insight and empathy in relation to the thoughts and feelings that someone may be experiencing prior to, during and after assessment.

I vividly remember a psychologist friend saying to me beforehand “What will you do if they say you are not Autistic?” and feeling a small amount of panic that I could be wrong about who I am or that I might not be seen for who I am. This is a question I often ask people who come to see me. The answers are often so sure and so definite, ranging from “well that would be wrong” to “if that’s the case then I clearly don’t know myself”. I felt this way too, but still a small seed of doubt was sown. I think a lot of us late-identified Autistics have this little shadow of uncertainty and imposter syndrome looming over us. Maybe because we have had years of masking and people believed our performance so wholly that we lost who we were behind the mask. In the end, confirming that you are Autistic, it’s kind of like a discovery and a rediscovery all in one.

I think it’s important to mention something here. I am not proud of this, but I have been “trained” in identifying an Autistic person as part of an MDT for quite a long time, and I have worked with Autistic children in some capacity for almost 2 decades by now, and I still did not see myself as being Autistic for years. I just didn’t consider it. Even though I seemed to have a strong affinity and sense of kinship with both Autistic children and adults. I already knew I was Dyspraxic and possibly ADHD, so surely this accounted for all my traits and quirks? It was only when I expanded my work to include Autistic adults that I started to very vividly see myself mirrored back. And the amazing thing is, is that my clients identified this in me too. Many of them said, “it seems that you are Autistic too…are you really not?” At this point, I wasn’t sure…

I also attended almost every webinar put out by Ausome Training (an Autistic led neurodiversity training organisation, offering education and support for Autistic people, families, healthcare providers and educators) over a certain timespan and was deeply passionate about doing so. I felt so many feelings during these webinars! I would be pacing, heart racing, intermittently scurrying over to my laptop to frantically type in the chat. Why did I care so much and why did I feel such intense emotions listening to Actually Autistic people talk about Actually Autistic experiences? Over time, my suspicions about myself solidified into a clearer view and I thought during the COVID-19 lockdowns that it was time I confirmed it officially. I considered this then, and still do to this day, to be one of the best gifts I could give to myself, to invest in absolutely confirming who I am.

This left me with a dilemma, where to go and what to do? I had read so many diagnostic reports from my clients and heard their experience of being confronted with a blunt, medicalised and pathologized document describing them as if they were a lab specimen or a case-study. I did not want this for myself, even though I knew I would see through the stark language and maybe see it as a means to an end.  A necessary ugliness to endure in order for me to confirm my identity.

Months into this predicament (I can be such a ruminant!), a young woman came to see for an OT assessment. She had recently been identified as Autistic and kindly shared all her documentation with me. Among the documents was a letter from a psychologist at The Adult Autism Practice addressed to her, informing that she was indeed Autistic and warmly welcoming her to the Autistic Community, saying that “Autism is a different neurotype, and a valid way to be in the world”, among other wonderful affirming things. Nothing medical or pathologising. This is exactly what I wanted my experience to be.

I experienced the usual anxiety and jitters prior to the assessment nonetheless (I think most people experience this to a lesser or greater extent), but was excited and eager to get started.

All of my communication preferences were checked beforehand and respected. I was given a variety of ways to express myself, including in writing and in conversations. I found the whole experience overwhelming validating, and while this was obviously very positive, I was not prepared for the emotions it unlocked. I had a big cry after my final session. I wasn’t sad, I don’t think, I can’t explain it accurately but it was a strange concoction of relief, validation and maybe grief at not knowing sooner.

Nor was I prepared the complete exhaustion! I am not, by nature a tired person, in fact quite the opposite, but I found myself needing a nap after one of my sessions. This is something I actually hadn’t hugely considered for my own clients and is now something I advise them about – the fact that you may feel very tired and need to rest, so let it happen if it needs to. I recommend that if the assessment is in the morning, that children don’t go to school in the afternoon afterwards, and that they do what their mind and body needs them to do, be it rest, game, read, run around and blow off steam, whatever.

It's funny, but I feel like acknowledging and confirming my Autistic identity has made me a better OT. I didn’t intend for this, or even expect it, but my own identity has become a tool for me - a therapeutic use of self I didn’t foresee. I think it’s important that I openly talk about this for many reasons. One being to destigmatise the topic and another being to relate and empathise with the children and adults who come see me, and also to let them know (before they even say a word to me) that I may be a kindred spirit and they are safe with this.

I never realised that so much of my shared joy in the clinic came from shared neurodivergent experiences, that I enjoyed stimming and echolalia and deep dives into niche topics not just because my client’s joy is rewarding to me, but also because this is my joy too!

A particularly beautiful experience I had, was with a girl who was then 8 years old coming to see me in the clinic. I had been part of this girl’s Autistic identification process. I felt a particular kinship with her, and also us Autistics often don’t massively care for social hierarchy so I, and many of the children who come see me, consider ourselves to be peers. Anyway, I told her that I thought I was Autistic and that I was going to have my own assessment soon. She responded with “well I think you are Autistic, and I hope the person doing your assessment is as nice to you as you were to me when I had mine”. I’m not ashamed to say that I was close to tears hearing this.

On that note, isn’t it interesting that this child identified me as Autistic too?? This is not as uncommon as you might think. We seem to have a sense for recognising each other. I love the old Irish saying “Athníonn ciaróg ciaróg eile” – one beetle recognises another beetle. And we do recognise each other! I remember during my initial training to do Autism assessments, asking if other people “just knew” when a person is Autistic and people stared at me blankly. I now know what that was.

This is so strong that many of us are drawn to other neurodivergent folk and develop communities and relationships. I am blessed to have an Autistic life partner who really gets me and eclectic neurodivergent friends. I don’t know if I could build and share a life with a neurotypical.

Autistic culture is so rich and varied and yet hardly anyone outside of the community knows it exists! But it does, and it take many wonderful forms.

I often say that I can “feel” when I meet another Autistic person, be it socially or in the clinic. But I absolutely cannot write this in a report and it is absolutely not best practice!

Neuro-affirmative identification processes are not only valuable and desirable but protective of a person’s sense of self and self-worth. Many assessment processes set up an Autistic person to fail as a neurotypical, rather than to succeed as an Autistic. Often, they are a measure of distress when a person does not live up to neuro-normative standards. Furthermore, more often than not, Autistic people are identified through their struggles rather than their successes. I had the good fortune to choose my process at a time in my life when I wanted to, not because I had to. Not everyone hast that luxury. Only identifying autism when a person is struggling sends a message that being Autistic is a struggle. To be clear, I am not saying I or other Autistic people don’t struggle, we do, but we don’t only struggle. We also have joy and peace and achievement and rich and diverse lives.

If this is the start of the identification journey, how we can expect Autistic young people to thrive, flourish and bloom as their Autistic selves?

Neuro-affirmative identification processes say ,“I see you for you, you are who you are supposed to be, you are not a broken neurotypical but a complete and whole Autistic being”. We owe this to the next generation of Autistics. We already exist in a world where we are an often invisible (sometimes visible) minority, and this world does not always suit us. Positive and affirming identification processes enable young people to navigate this world more comfortably and dare I say more boldly.

Doing neuro-affirmative assessment also feels better for us clinicians. I promise this is true! It is so much better to know you are equipping a young person and their family with validating information. Not pushing a box of tissues towards them and saying, “I am so sorry” and continuing to feed into the tragedy narrative.  We can send families out into the world with tools to make their way on their own unique journeys. As the people who help identify and confirm that a child or young person is Autistic, we can stop feeding the notion that Autism is something bad and help forge a better path. The whole world will be better for it. 

Author

Katie Kerley: Clinical Director of Horizons Therapy Services Ltd in Dundalk and The Adult Autism & ADHD Practice's Consultant Occupational Therapist.

Check out the book HERE!