The road to diagnosis: Labels matter

Labels matter. They are important. We all get given labels; what matters is whether the label helps us understand our experiences, develop a positive sense of identity or self worth, or whether the label inhibits self understanding and corrodes our self esteem.

Growing up, I did not know why I was different. As a child, I was perfectly happy and did not question my existence. The questioning began as a teenager. Unlike other kids, I struggled to make and maintain friendships. But why was this the case? I blamed my parents. Maybe they had not socialised me enough; maybe, if they had sent me to more after school clubs, such as Brownies, I would be able to socialise with ease. Then, later on, I began to doubt my personality. What if I was simply messed up?  Certainly I acted out the weird kid role from time to time. But I had nothing to lose. I had tried to be civil and pleasant towards the other kids; I had mimicked the quiet, shy girl persona. But it had not worked, so what was I supposed to do? I veered between acting quiet and passive, sitting meekly in the classroom, barely uttering a word, to being inappropriate in front of the most popular kids. For example,  I would stare hard at them to elicit a reaction, and they would say, ‘we are not laughing with you, we are laughing AT you”. But the distinction was irrelevant to me – after all, being noticed was better than being invisible.

I internally labelled myself as ”weird”, as ”messed up”. Labels matter.

Yet I was in denial about my problems. I still wanted to believe that they would all disappear and that I would simply change one day, given enough time.

My OCD grew steadily more severe. The world seemed like a scary place. I took safety instructions literally and  too far. For example, I believed that because raw  and under-cooked meat carried bacteria that could make you ill, to be safe I would avoid eating meat. I would avoid travelling too far because of the risk of being caught up in a terrorist attack. I would avoid walking past people in the street, particularly babies, in case I caught a disease. This last fear was ironic considering that babies were my special interest. But I had read all the parenting magazines from cover to cover, and had gone from following babies down the high street while cataloging their every existence, to avoiding them like the plague. Babies, in my mind,  now all carried the diseases I had read about in the magazines.

My parents had encouraged me to go to University, and with their intensive support, which helped me learn how to write essays and revise for exams, I managed to gain enough qualifications to secure a place at my local Uni, to study History. I still lived at home, and  my days were spent between University and home, with a weekly trip to WH smith to check the celebrity magazines for pictures of Kate Winslet.  I did take up a voluntary role at the local cinema, which involved collecting tickets and showing people to their seats, and the added bonus of being able to watch a film for free. I did this very occasionally during the daytime, and this activity felt quite safe as the customers were all retired, quiet types. But generally my life was very limited.

My parents became very concerned about my obsessive behaviour and the way I was denying myself experiences because of my fears. They encouraged me to visit the doctor, but I refused. I was happy. I was still in love with Kate Winslet, and university studies provided me with a sense of meaning. I was not depressed. I did however agree to see the University Counselor, who was really nice and listened to my concerns. She suggested I might have Aspergers, after listening to me talk about my interests. My parents had also suggested that I might have Asperger’s, but I had angrily shouted them down and refused to accept the possibility. But gradually I began to wonder whether or not they were right, particularly after I had googled the condition and read a small amount about it.

Eventually matters came to a head  when I was watching a music video with my parents. I was really looking forward to watching this video,  and I did not want to be interrupted. But as I was watching, my dad started making comments about the video. This distraction made me lose the plot, quite literally, and I began screaming and banging doors. I was so beside myself that I even screamed ”I’m going to kill myself!!!”. My mum had to restrain me. I stormed upstairs, but once I had calmed down, I began to come to my senses, and thought that actually it would be a good idea to seek help. I told my dad to make a referral with the GP on my behalf.

The GP made a home visit as my OCD around germs meant I could not sit in a doctor’s waiting room. She referred me to the mental health team for Cognitive Behavioural Therapy.

In November 2007 I began receiving CBT for my OCD. I accepted that I had OCD, whereas previously I had been adamant that I had no condition and was just a typical teenager. But I suddenly wanted to find out as much as I could about OCD. I even became rather obsessed with the subject, and read endless psychology books; OCD began to supplant Kate Winslet as my specialist interest. But I still felt alone in the world, and could not completely relate to OCD. I was not depressed, and the books I read about OCD went on about mental illness, medication, and no joy in existence. My existence was full of joy and passion, and I did not think I was mentally ill. But there was nothing in what I was reading about social difficulties and problems relating to people, other than in the context of social phobia.

Indeed, when I told my therapist about my lifelong difficulty making friends, she put it all down to lack of confidence, shyness, and a complication of my OCD. I just knew this was not correct. I was aware that I had longstanding developmental issues that had been there all my life, and had not been triggered by an event. Moreover, my social difficulties had preceded the gradual onset of my OCD in mid childhood.

Yet again, I googled Asperger’s, and this time I mentioned the possibility of being autistic  to my mum. She seemed so relieved!. ”Yes Anna”, she sighed, ”this is exactly what I have been trying to tell you for years”!!!. I told my parents that I wanted to be assessed for autism, and they said that they would support me every step of the way.

I went back to my GP and asked for a referral to be assessed. My mum  had given me a full developmental breakdown of her concerns from toddlerhood, that I sent to the GP. I’m not sure if this was necessary, but the GP was very supportive and agreed that Asperger’s was a possibility. Because I was under the mental health team, she first had to refer me to a Consultant Psychiatrist, and this was where I met an obstacle.

The Psychiatrist’s specialism was Schizophrenia and she saw me on her last day before retirement. I mention this because she was clearly not an expert in autism, and was no doubt not well versed in the latest research or understanding. She spent the whole hour telling me that I had a social phobia and to go on antidepressants. She did not mention Asperger’s at all, despite the meeting supposedly being about getting me referred for specialist assessment!!! I did not mention Asperger’s either, because I did not want to sound too pushy and I had a deferential attitude towards doctors, believing that it was not my job to suggest potential conditions before they had taken the initiative. I was also worried about what she might say if I mentioned Asperger’s. With hindsight, I wish I had directly asked her about Asperger’s, and why she was not asking me about my development, which was supposed to be the purpose of the meeting.

I was very upset when I received a report from the Psychiatrist saying that I had a social phobia, and that the quality of my interaction did not suggest Asperger’s!!! She had only spent one hour with me, and no  doubt because I was well dressed (also mentioned in the report), had co-operated, looked in her direction, and pleasantly answered her questions, she concluded I was just a very shy, anxious girl lacking in confidence.  Yet again, the label ”shy” had been  misapplied, preventing me from getting the correct support and understanding that I needed.

I was so upset that I phoned the Psychiatrist’s secretary to ask for a second opinion. I told her that I thought I might have Asperger’s. ”Oh, we must not self diagnose”, she patronisingly asserted. I had not self diagnosed at all, I had merely told her that I thought I might have Asperger’s, which is hardly the same thing as saying I had the condition! In any case, if a person does not first suspect a condition in themselves and no doctor suggests the possibility to them, great damage could be done if no assessment is therefore offered. Psychiatrists and their helpers can be incredibly elitist towards their ”patients”, and I think this facilitates the application of wrong and damaging labels.

After having a screaming ”meltdown” back home, and not one to give up, I asked my therapist to refer me to another Consultant Psychiatrist. This Psychiatrist was young and efficient, and he spent the hour asking me in depth questions about my childhood, something the first Psychiatrist had utterly failed to do. He admitted that he could not diagnose me himself as autism was not his specialism (oh, at last some professional humility!), but that he would refer me to a team that could properly assess me. It just so happened that the local adult autism team had been set up that year, and so he could refer me to them. I was told I would have to wait up to a year to be assessed.

It was great that I was finally on the road to getting assessed, but my therapist told me she could no longer provide me with CBT because if I was autistic, she would have to alter how she delivered the therapy. The therapy was so far not working, and she wanted to wait for advice from the autism team. However, she referred me to a mental health support worker, who saw me for one hour a week while I was waiting to be assessed.  This support was really beneficial because they saw me in the community and helped me gradually to expand my horizons, by visiting cafes and walking through the town centre. This practical input was far more effective than the abstract, rather removed from the real world nature of therapy. I needed someone to be there with me while I tried to fight my fears, instead of talking to me in a clinical vacuum.

Within the year, I continued to voraciously read psychology and autism books, in order to help me work out who I was as a person. I worried that I might just be ”messed up”, and I really needed answers. I knew that it was possible I might not be autistic, and that another developmental condition might explain my problems. I was open to another answer. All I wanted was to be given the correct label so that I could put my life and experiences into context, and form a more positive self identity.

While waiting for assessment, I also volunteered every Friday at the Sussex Autistic headquarters in Arundel. This involved a short train journey, and I had not traveled by train for years, but because finding out about the potential answer to my problems was so consuming, the interest motivated me to do what had been impossible.My brother accompanied me on my first trip to the office for an informal interview. My work there involved office tasks, and later on, after my Autism assessment, I was invited to give my first talk about my experiences to a group of social workers. Although I started volunteering there before I had official confirmation that I was autistic, the experience helped me learn more about myself. The office contained a library full of Autism literature, and I think I read every single book they had to offer!  I was already feeling more secure about who I might be as a person, as I became aware that I was not the only one with social difficulties.

In the space of a year I had gone from being in denial, to wanting answers. Being in denial felt safe because I could avoid facing the difficult questions about the nature of my existence. Yet at the same time, being in denial only delayed progress and repressed my frustrations that were bubbling beneath the surface. When I finally faced my problems, it was as though a tsunami had been unleashed, and I was facing a tidal wave of self doubt and low self esteem.

Assessment day 

In November 2008, I was finally seen at my home by a Clinical Nurse Specialist from the adult autism team. He spent the whole afternoon talking to my parents and myself about my childhood and current functioning. At the end of the meeting he said that he had no doubts that I was autistic, but would be back the next week to give me a few questionnaires to fill out. These questionnaires were the Autism Quotient and the Empathy Quotient, and I scored in the autistic range for both of them. Although he had enough evidence to diagnose me there and then, I told him that I also wanted to be seen by the multi-disciplinary team because I wanted the assessment to be as thorough as possible. This delayed my full diagnosis by a few months, but I am glad that I waited because it gave me the absolute certainty and sense of diagnostic validity that I needed.

In March of 2009 I went to the local psychiatric hospital for the assessment. I had a one to one chat with the autism Psychiatrist, while my parents spoke to the Psychologist, Speech and Language Therapist, and Clinical Nurse Specialist in another room. After a break, we all sat round a table and the Psychiatrist confirmed  that I had Autism. Although I was told it was of the Asperger’s variety, my report used the label Autism because Autism carries more weight and looks more serious than Asperger’s. A few weeks later I had a meeting with the Autism Psychologist, who assessed my daily functioning with a series of questionnaires. Based on this, which showed that I had support needs, he referred me to the Sussex Autistic Society for outreach support. I began receiving support from this charity in April 2009.

After diagnosis, my sense of confidence and self esteem began to grow, and I felt more secure and validated. This new sense of self understanding was the lynch pin that enabled me to work on my OCD and phobias. Over the the ten years since diagnosis, and with specialist autism support, I continue to overcome my challenges. I still experience a lot of self doubt, and from time to time I even doubt my diagnosis. I think, if I’m really autistic, then why was I not diagnosed in childhood, and why did the Psychiatrist at the mental health team dispute the possibility of Asperger’s on the grounds that I interacted too well? Yet, I know that these doubts are ill founded because no other label can explain my life long inability to understand relationships, my problems processing social information, and my strong and intense mono focus on particular topics. Autism puts my life into context, and this on its own facilitates self development. So correct labels matter. It is a form of psychological neglect, even if unwitting, to deny a child or adult the self understanding and acceptance that they need in order to make sense of their life, and from there to be better facilitated to overcome life’s challenges.

 

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