Late-Identified Autism Interview: I Wanted So Much to Celebrate
This is my 11th interview in my series Interviewing Late-Identified Autistics. Olatunde is a late-identified autistic. My questions are in bold and Olatunde's responses follow in regular typeface.
How old were you when you learned you were autistic?
The journey started for me when I bought the book "Too Bright, Too Loud, Too Fast, Too Tight" by Sharon Heller. It was recommended to me because my daughter had lots of sensory issues that I didn’t really understand. After sharing the information with my partner, he said, "That sounds like you." I wasn’t quite sure what he meant but it did resonate, my daughter and her sensitivities were my focus so didn’t think any more about it. A few years later I met with a work coach for managing stress at work and he thought that some of my difficulties may be due to autism. At the same time as this was my son was having difficulties at school and was experiencing regular school exclusions. After some research I did suggest to the school that his difficulties may be due to undiagnosed autism. This was refuted and an assessment denied. After a long battle and challenging the school decision he was eventually permanently excluded from school. We agreed that an assessment for autism would help his case and used this assessment to appeal to a special educational needs tribunal to overturn the permanent exclusion because we knew that the permanent exclusion was discriminatory. After 15 months we had our case heard and the tribunal agreed. We did get him returned to his school and both children were diagnosed as autistic as teenagers. This helped me to think about an assessment for myself.
How did you learn you are autistic?
Through my children’s assessment process. Being asked questions about did I notice that they were different to other children, the questions made me think about what is different and what is ‘normal’ my children’s ‘behaviour’ was normal to us. We didn’t like crowded busy places, we had set routines for our day and we gave each other space to be.
How did you decide whether to self-identify or diagnose?
I decided to get an assessment and diagnosis because I felt uncomfortable self diagnosing. This is a complicated issue for most autistic people, but amplified if you are from racialised group. Not being believed, or being treated with suspicion, was something I knew would trigger internalised racism and I just didn’t feel there was the support out there from a wider white majority community to understand the complexities of intersectional issues of racism and ableism and how they can undermine sense of self in the face of systemic oppression.
How did you feel when you learned you were autistic?
Great – I wanted so much to celebrate and told a few people to begin with to see what it felt like to say it out loud. As a family with my 2 children we connected and shared some jokes about our foibles and our idiosyncrasies. This mattered as I really wanted my children to feel comfortable talking about autism and what it meant in their lives.
What is your gender? How do you feel this impacted your journey as an autistic individual?
I am a cis woman. I felt worried about being assessed using the very blunt instrument of the ADOS assessment tool. It does not capture the nuance of women’s survival skills or assets, and is very much designed around parent/child questioning so it felt a very strange way to ask questions of me and my partner. A lot of the questions were just inappropriate for an adult (e.g being asked to look at a child’s story book and create a story). As a parent I was used to reading stories to my kids and the point of the exercise is to assess for social imagination, this would be better done in real life situations like what do I think that person might be feeling or thinking. The ability to read or imagine what is going on in kids book that is of a white boy in his bed in a possible dream didn’t make sense to me as an adult, furthermore, I had no interest in what he was doing or not doing.
How did any other of your identities impact your late identification as autistic?
At the point of deciding to get my children assessed for a ‘psychiatric disorder’ I was concerned that I didn’t have enough of an understanding that was non medicalized. As a result I looked for a course and found Luke Beardon’s Post Graduate course run at Sheffield Hallam University. The course was led and informed by autistic people’s experiences. However there was a lack of information and input from or about a Black perspective. This led me to research these issues which resulted in me writing an article that was accepted and published in The Neurodiversity Reader –Pavilion Publishing. The article was about the journey and the battle we had to get my son back into mainstream education and addresses issues of disproportionate rates of exclusion for Black Caribbean boys with disabilities. There is little research about the specific experiences of Black autistic boys of African Caribbean descent.
How did your friends and family respond when you told them you are autistic?
My partner struggled with accepting the label of a ‘psychiatric disorder’. We are both politically active in challenging mental health ideologies of illnessand the idea that someone has a ‘psychiatric disorder’ as opposed to facing challenges of social injustice, trauma, oppression, poverty etc.was hard to square. Our position would always be to ask what happened to you as opposed to ‘what is wrong with you’ as a starting point to understanding the person’s distress and experiences. Voluntarily getting a psychiatric disorder really went against everything we believed.
However I had a very different and developed understanding of what autism is and we spent a long time thrashing this out to come to a shared understanding of what is means to be autistic and why identity first matters to me. My experience of the world is very different and challenging at times and getting the acknowledgement and support to not to try and fit in and manage the stress that this causes has been so important in supporting my wellbeing and general health. The long term stress of trying to fit into noisy environments, constantly checking how you say what’s on your mind to not appear blunt, evading small talk, struggling with discomfort of expectations to wear formal clothing for work or gatherings, not getting jokes, feeling disturbed by sarcasm because you have just taken something literally, squirming while trying to maintain eye contact with people you have just met, etc. All this takes a toll on physical and emotional health and can impact people’s view of you when all you are trying to do be your best self.
Did you seek out therapy, coaching, or other forms of structured support for autism?
No but after my diagnosis I did attend a 6 week post diagnosis course which was interesting and I met some nice people there.
How has learning you are autistic impacted your life?
I just feel everything now makes sense and am still navigating how much I need or don’t need to mask, and when masking works for me. I feel I can now let people know what I need and don’t need. I feel peaceful and not guilty about limiting my social interactions. Silence is a must and I can now get that because it’s understood as a need rather than a want. I can support others who may be struggling with similar issues as I have an understanding from a lived experience perspective, as a parent, as a Black parent, as a trauma therapist and as a Black autistic trauma informed autistic art psychotherapist and anti-oppressive activist.
Your Current Life
How have you modified or adapted your life since learning you’re autistic?
My partner supported me to have my ‘she shack’ built in my garden, it is my office and studio where I can work in complete quiet away from all the noises of the house. It is my sanctuary.
In what ways does being autistic enhance your life?
I am very interested in the assets and abilities that being autistic gives me e.g. attention to details, great bullshit detector, empathy, being able to myself first with regard to self-care as a must, attention to detail in the work that I do as a therapist. I embrace working from a stance of naïve curiosity and ‘not knowing’ as a practitioner and feeling comfortable now knowing because I can’t know someone else’s experience. Asking questions that helps to develop a shared understanding of someone’s distress or challenges in life. I think these are great qualities to have in a therapist, but I find they come naturally due to not being able to second guess or create a narrative about a person from my own judgements or ‘theories’.
What are some topics or activities you’re passionate about?
Autism, anti racist practice, calling out oppressive practice and supporting learning in areas of anti-oppressive practice.
What does a typical day look like for you?
I need time in the morning to get myself together and ease into my day. I have some physical health conditions that impact my energy levels and struggle with a lot of joint and muscle pain. My day usually starts by being kind to myself, not rushing, I have always have a decaf coffee and toast before I start my day. Starting my day in the same way every day helps me to adjust to the world slowly and predictably. I try to keep to the same routines, if they are disturbed for any reason it is difficult for me to reset and can find myself feeling like I am in the wrong part of the day. Routine and predictability over the things I have control over help me manage unexpected changes and I also give myself permission to accept being discombobulated if things go wrong or change without warning.
If you work, what do you do for work?
I work as an art therapist and also use EMDR in my work. EMDR is as trauma treatment for PTSD and Complex PTSD primarily but can be effective for other kinds of difficulties someone may be experiencing, e.g anxiety, depression, addiction, relationship issues and many more. I am also a print maker.
Is there anyone else in your family who is autistic?
Probably all of my family, it is inherited, I think my dad was definitely autistic, he had the same routines, same cup, same chair and couldn’t bear loud noises of things like the shaking of a dice in a shaker cup. He loved his animals and spent more time with them than he did people, he was loner and lived for many years in ‘the bush’ in Jamaica until he came to England at age 35. I think a lot of my siblings are but they may not fully understand what autism is. My cousin definitely.
What are some of the challenges you face in being autistic?
Lack of understanding about what autism is especially with professionals who have a very narrow understanding and pathologising perspective of autism, what I mean is coming from a deficit/disorder frame. Other challenges include physical disabilities, I think I am more sensitive to pain and discomfort. Overwhelm being misunderstood as anxiety where for me overwhelm pushes me to act in my best interest needing to be direct or blunt about my needs at that time. I find wrapping up what I want to say in language that is more acceptable to others is sometimes difficult as it can mean that it is clumsy for me or misses the point e.g can you shut up its hurting my ears, having to reword it and think through the rewording to get my needs met so I end up saying something like ‘I’m finding it quite hard to focus with so much noise around me’ this thinking and rewording increases my stress and conveys a diluted sense of what I am actually experiencing which is an intolerable assault on my senses.
What helps you prevent or cope with moments of overwhelm?
Predictability, routines, ear plugs to reduce noise, sleep, good food, quiet spaces across my day, making art when I have the chance even if is only a scribble with oil pastels, letting people know I’m not ok, swimming, cycling and massages when I can and when I’m not struggling with exhaustion.
What skills or strategies have helped you to work with your autistic mind?
Appreciating my autistic mind and having a partner who can translate some things for me. I feel comfortable now actively seeking his advice and or understanding about subtext, metaphors and the context so I can add them to my bank of knowledge (my internal rolodex of saying and phrases) just in case in comes in handy at another point. Appreciating my ability of not let things go, if it’s around oppression or a problem I am trying to solve I will see it through to a resolution.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
I think the medical system has far to go, recent documentaries on UK TV about the state of care in inpatient settings has been appalling, lack of understanding in general health settings is poor, e.g going into A&E depts seeing autism friendly posters and then staff responding to your request for a quiet space with disdain or saying we don’t have one. What is the point of the poster it’s certainly not a friendly response!
How did being an undiagnosed autistic child impact your childhood?
I was a very shy and fragile child – I always felt the world was too much and too big.
What ways did you camouflage or mask?
Not sure. I was a very quiet young child and then a very rebellious teenager, that was vulnerable to exploitation by others in my later teen years.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
A lot of my worries, quirks, quick mind, and curiosity make sense to me now and I can begin to reframe my experiences and give myself a big hug for being a sensitive and fragile soul at times.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
I say it's like having a different operating system, a bit like the difference between a Mac and a PC, same thing different operating system.
What do you wish others knew about autism?
How hard life can be when people assume they know about autism but don’t take the time to know about your individual experiences. Another phrase that I struggle with is ‘on the spectrum’ often described as something linear that starts at one end and ends at another point. These points on ‘the spectrum are usually referring to function which is ableist. Someone described as at the ‘lower’ end of the ‘spectrum’ is often used for people who struggle to speak or struggle with verbal communication. I also get irritated by what follows this statement which is ‘that we are all on it? On what? There is a book and film about autistic people who are non-verbal ‘The reason I Jump’, (One Boy's Voice from the Silence of Autism is a biography attributed to Naoki Higashida, a nonverbal autistic person from Japan) that people should read and understand the issues of being non-verbal.
What is your advice for someone who thinks they might be autistic?
Read research, follow people on social media, understand that what you might be experiencing is normal for you.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
Online screening tool: https://www.clinical-partners.co.uk/for-adults/autism-and-aspergers/adult-autism-test/test?restart=c4turdibqt5jamoc2lcsprso5i&fbclid=IwAR0q9nwkQJvKW6ZtRRV_t89M6boueBm3mKnfw6Weib2LXVrC9ezY7ucj2Rg
Anthropological perspective on autism: https://www.independent.co.uk/news/science/archaeology/prehistoric-autism-cave-paintings-barry-wright-penny-spikins-university-of-york-a8351751.html
How ability can grow out of seeming disability: https://blogs.scientificamerican.com/beautiful-minds/autism-more-than-meets-the-eye/
Video - exploding myths about autism: https://axia-asd.co.uk/exploding-myths-presenting-positive-perspective-autism-dr-luke-beardon/
Are there any autistic characters in books, tv, or movies that accurately reflect autism?
Not sure haven’t seen enough to say there is a fair representation of characters.
Connecting with You
If someone would like to connect with you, how can they reach you?
I have a website for my work but am happy for people to connect with me using my contact form.
Do you have any works, websites, or other creative ventures you would like to share with others?
Thank you for reading. If you are a late-identified autistic, I would love to have you participate in this series. Please email me at email@example.com if you are interested.