Originally, I had planned a second post on the wonders of sleep and how recent advances in neuroscience have contributed to our understanding of the important contributions our night time slumber make to mental health and well-being. Then I had the good fortune to meet David Thorpe, a very talented young psychologist who shared with me his passion for enabling people on the autism spectrum to live well with their diagnoses. I am sure you will agree that his piece on Living to your diagnosis is excellent, very moving, and insightful. He kindly agreed to us publishing it as a guest blog this month. I have not given up on sleep however, so watch this space for the second of the planned trilogy on sleep… Dr O.
Living to your diagnosis
By David Thorpe
When I was seven years old, I was diagnosed with Autism- Asperger’s Syndrome. At that age, I had no idea what those words meant. I knew I was different, I knew I didn’t see the world in the same way my peers did in primary school. I knew I was “special” as I was so positively told, but somehow all of this was meant to be understood through one word that previously was gibberish- autism. Armed with this new word, I began to learn its meaning through my experiences. Why do I not understand my peers’ jokes? Ah, autism. Why can’t I look people in their eyes? Ah, autism. Why do I feel angry and don’t know why? Ah… autism. This was the beginning of the negative perspective of my diagnosis, which would continue throughout my life.
Diagnoses are dangerous to the perception of their holder. After being told a rule, you start interpreting the world to fit that rule, you ignore information that doesn’t fit, and intensely focus on that which does. This concept is part of a wider term known as Schema Theory. Schema theory accounts for prejudices/stereotypes, biases, and several other phenomena that skews your perception. Imagine reading a book where the twist ending is that all the characters were actually dead the whole time. While reading you didn’t think like that, but now you’ve been given a new rule for understanding the book. You re-read it and now all the hints and language that relates to it you are able to notice. You now have a different perspective based on this new rule.
Imagine this, but instead it is being told you have Autism. Retrospectively you view and understand your experiences through this new word. Prospectively, you fit experiences to be contained within this diagnosis. All my statements in the first paragraph are a perfect example of that. This process worsens when you start to interpret all differences and negativity under this word. You start to view the world through the lens of:
Negative experience -> Feeling upset about it-> Using autism as an explanation for the experience -> I don’t like autism –> I am autism -> I don’t like myself.
While there are some short-term benefits to this thought process (It’s not my fault I have no friends, it’s the Autism) where you can try to retain some self-esteem by blaming everything on a word. This quickly becomes a damning negative. Autism is part of my identity, and in adolescence I blamed it for everything wrong in my life and I hated it for that. This led to me hating a large part of my self.
I have studied and learned a lot about autism and mental health; I have talked with lots of people with different presentations of all kinds of conditions. I have heard the same language used throughout.
“My depression is ruining my life”
“Your anxiety is stopping you from going to work”
“My autism is why I can’t make friends”
“Your OCD makes you different”
Personal perspectives, supportive friends, and even most professionals put the emphasis on the condition rather than the person, adding fuel to this destructive fire of self-hatred, negativity, and defining yourself by your diagnoses. The danger comes when you’ve seen through this lens too long. You make the association between your condition, your self, and all the negativity in your life, leading to defining yourself with a word that you have learned to hate. A small inconvenience can suddenly be perceived as another page in the book of how this condition ruined your life. The perspective is distorted and skewed negatively. You want a cure for it, you want it gone, and you are so fixated on this idea that your health deteriorates around it.
What is the alternative to this self-hatred?
One alternative is learning to understand your self and the language you use to define it. A growing therapeutic practice known as Acceptance and Commitment Theory draws from this concept well. It operates on not trying to cure a condition or diagnosis but instead teaching that it is okay and to accept it. The negatives of the condition are fine. Accept them. Where your health truly deteriorates is when you try to cope with the condition in unhealthy ways (Repression, self-medicating, isolating yourself…). I love this theory. Its aim is not to reduce a condition, merely help you live with it and accept it. It says, ‘maybe autism/anxiety/OCD/anything is not what I would have chosen to have, but I have it, and that’s okay.’ This theory offers a great perspective to diagnosis. Deconstructing the words and realising that all they are is words and not your definition.
My story is autism, yours could be anything. But what we need to understand is that no matter what your story is, it’s yours. Accept it. Don’t scapegoat it. It has its negatives yes, but that’s okay. Life isn’t a story of bad and good. It’s just life; ups, downs, and other ways around- it’s all part of life. It’s difficult and I’m far from good at it, but I’m learning to accept my diagnosis for the good and bad it brings. My autism doesn’t define my negatives, nor does it define my positives, and it doesn’t define my whole. It’s just part of the story, a footnote in the magnum opus of my life.
You define you, and no diagnoses or labels can change that…
What is your story about diagnosis? Or that of your loved ones? In the UK (and perhaps around the world), I believe, we need to start with a new story that is positive about mental health, irrespective of the diagnosis. You are you. Your label whatever it might be is only a small part of your story, but every now and then we all need a little help.
Here at The Psychology Consultancy we offer a wide range of services that can help you, your team or work place, or your loved ones. One of these services is providing diagnostic and second opinion assessments for people affected by conditions such as autism, ADHD, specific and general learning disabilities, and mental health. But our offer extends beyond categorical diagnoses: We assess comprehensively, aiming to provide a way to understand problems and not just to give a label. This also means we offer as much or as little follow on services as you would want and will work with individuals, their families, employers, and schools to show greater understanding and enable people to reach their potential, despite their challenges. You can contact us by simply completing the form below for more information on our services. Here is a sample of some positive feedback we recently received following the comprehensive assessment of a young person referred to us by his parents.
“To Whom It May Concern
Our Son had suffered with Anger and Emotional issues for a number of years, particularly getting worse as he reached 15 years onwards. Through our GP we tried getting help from the NHS mental health sector a number of times, but they wouldn’t even pass our son for an assessment as they felt he didn’t tick the necessary boxes. We subsequently found private counsellors to try to get to the bottom of our Son’s problems, but having tried three different Counsellors without success, we were struggling to see a way forward for him.
Our GP gave us Dr O’s details and within 3 days of speaking to him we had our first meeting. From that very first meeting, we came away feeling like a weight had been lifted from our shoulders, at last someone seemed to grasp our Son’s problems.
Following very thorough tests and assessments with our Son and meetings and questionnaires for us as parents, Dr O produced his report, diagnosis and a way forward for our Son. As well as getting to the bottom of our Son’s condition, Dr O has been most supportive to both our Son and to us as Parents, both through the process and afterwards.”
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