To Label or Not To Label By Guest Blogger Rachel McNamara
Soon after the day that my husband made the ground breaking revelation that my son Jeremy was “just odd like me” and implied that it was ‘no big deal’, I went in search for answers.
It was reassuring that my husband loved me, ‘oddness’ and all and that it was no concern for him, but my childhood was intrinsically traumatic. I suffered from chronic and severe anxiety related to social situations, including at school and university, because I was aware that my conversation skills were very poor and I could not relate well to my peers.
When I heard about Autism Spectrum Disorder (ASD)*, I thought that it might be the explanation I was looking for but I wasn’t convinced of it. It is hard to be sure if you have autism because the descriptions of autism are usually from a health professionals perspective (what they see in you) and therefore don’t match the personal experience of autism (what you see and experience yourself). In addition, each person with autism is unique. Autism is very complex especially to someone who knows very little about it and at that stage I knew very little about it.
I thought that if I arranged for myself to be assessed and was found to have autism, then surely that is what Jeremy would have too, it seemed sensible to me to assume that Jeremy had inherited his differences from me, given we were mother and son, even though our differences were different.
I made an appointment with a private psychologist that specialized in autism. My brother wrote a short letter about me at my request and I tricked my mother into providing information on my childhood with the pretence of needing it for mainstream counselling.
Why did I trick my mother (who I love very much and who is now very supportive of our diagnoses) into providing information about my childhood? Unfortunately, my mum did not want me to seek a diagnosis of autism in the beginning. She kept talking about not wanting me to have a ‘label’ and she made many distressed phone calls to my siblings about it. In lieu of mum’s strong objections to my seeking a diagnosis, I was afraid that she would refuse to provide information or would provide biased information about my childhood if she knew the true purpose of the request and so I lied.
It’s a myth that people with autism cannot tell a lie. I can tell a lie if I feel the need to. However, I probably feel the need to lie less often than others (such as ‘white lies’) and maybe because I am less comfortable with the concept of lying and less practiced at lying I may not be as convincing. People who know me would most likely say that I tell lies a lot less than most people, but if I had to lie to save my life I would AND I would do it with conviction. I considered that getting an accurate account of my childhood was crucial for getting an accurate diagnosis and so I perceived the need to tell a lie on that occasion.
I can’t recall exactly how I felt about mum’s objections, by that stage mum and I had disagreed on several parenting strategies already and the shock of her disapprovals had worn off. I disregarded her opinion and her feelings (validating someones feelings was something I was yet to learn about) because her argument didn’t make sense to me.
Many people show resistance getting a diagnosis because of the fear of being labelled. It is true that labeling can be associated with stigma. Stigma is defined as ‘the co occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised'. So perhaps those people afraid of labels have good reason for concern.
However, a recent study has shown that it is the social behaviours characteristic of autism and not the diagnostic label that results in stigmatizing attitudes towards people with autism. People often notice the different behaviours that people with autism display and misinterpret the reasons for the behaviour attributing them to naughtiness, laziness, rudeness, incompetence or parenting styles etc. I wanted to have a working template for understanding myself that wasn’t based on any of those negative assumptions.
Differences need to be understood properly without value judgment. Having a template on which to study and understand those differences benefits from a label. It has been shown that a reduction in stigmatization of people with autism is associated with increased knowledge of autism (the ‘label’) in addition to more direct contact with people with autism.
In years to come, when differences are properly understood and celebrated, assuming that we are gradually making inroads in that direction and that is debatable, then we can do away with diagnostic categories and focus on individual strengths and challenges and provide more individualized rather than categorized support.
Unfortunately, I lack the conviction that most lay people can fully comprehend and/or be open to the myriad of differences in brain and body function that exist independent of ‘good’ and ‘bad’ value judgments and how the dominant environment discriminates against them (with or without intent for harm). I’d still like to be proven wrong.
In addition, I needed the ‘label’ to know how to support Jeremy to the best of my ability (including seeking professional support). I didn’t want my sons to experience the extent of anxiety and confusion that I experienced during my childhood. Without the ‘label’ and the associated evidence-based information about how to support it, I personally feel that I could not have understood and supported my children as well as I have.
The psychologist that assessed me asked me what I knew about autism and I replied that I didn’t know much about it because I didn’t want to “waste too much time researching a condition that I may not have”. If you have read any of my other posts you could probably assume that when I decide to research something, I invest a lot of time into it because detail, specific relevance and accuracy are important to me (a few of my autistic traits).
After, two half day consultations the psychologist confirmed that I had Asperger’s Syndrome (an ASD). After I received the diagnosis I met up with my brother David and he asked how the appointments went and I said “Just call me Spergs”. Of course, since then I have learned that many people with Asperger’s Syndrome prefer the abbreviation ‘Aspie’. Now, they have removed the diagnostic term Asperger’s Syndrome and instead use the all-encompassing diagnostic term of Autism Spectrum Disorder (ASD)*.
My mum was upset for a while after I received my diagnosis until she talked to one of my sisters who said to her “but mum, it doesn’t change who she is”. That comment wouldn’t have a lot of impact if it was said to me in passing because it is one of several expressions that does not make a lot of sense to me but it proved very useful for mum. I’ve since heard that variations on that phrase have been useful for others when they are informed of a diagnosis of autism and so perhaps it means something to you the reader.
The revelation of ‘it doesn’t change who she is’ was a turning point for mum and these days mum will gladly pass on any information that she comes across on autism because she is now not only accepting of all of our diagnoses but even interested and proactive.
After my diagnosis, I immediately began borrowing books from the AMAZE library. The first books I borrowed were autobiographies of people with autism, which I believe is a good place to start because you get to know people with autism, their strengths and their challenges, rather than just learning about ‘impairments’ from textbooks and manuals.
I was advised not to book Jeremy in for an assessment until he turned three years old because I was told that it was easier to delineate autism from typical development at that age. Booking Jeremy in for an assessment for autism with a psychologist and a paediatrician (he was already seeing a speech pathologist for speech delay) came with fresh and more openly objecting disapprovals particularly from my husband and some members of his family. It was one thing to insist on having myself assessed but not a child and their own ‘flesh and blood’.
When there is something I believe in I will pursue it at all cost (another of my autism traits). After reading more about autism and after my own diagnosis, I was certain that Jeremy also had autism. Actually, that is not true….there was a little voice in my head that said “Maybe everyone else is right. Maybe it is my anxiety and obsessive nature inventing problems” but I felt that the moment that I showed any doubt was the moment people could talk me out of investigating it further. Although, the fact that I seemed so sure that Jeremy would be diagnosed was ‘off-putting’ for many people too, I don’t think there was any approach that could have helped me escape unfavourable judgment and criticism during that process.
I retrospectively documented Jeremy’s behaviour and health from birth and early childhood right up to his assessment, took photos of his many ordered arrangements of toys and secretly videotaped his play. My husband referred to my ‘quest’ to have Jeremy diagnosed as ‘obsessive’.
I was aware that my determination to have Jeremy assessed and my detailed documentation could be labelled as obsessive but now my husband is fully supportive of the diagnosis, early intervention and support that Jeremy has had (and continues to receive) and it is clear that my determination and attention to detail was justified. Although, twenty pages was more than necessary (I can laugh at myself, although it is easier after the fact), it was helpful for the pyschologist to peruse (especially given my poor verbal recounting ability) and it was cathartic.
It was those early months of seeking a diagnosis and the lack of support during that process, which were the most difficult for me. That was my experience and may not reflect what other people remember about it because people’s stories are always different when told from another person’s point of view. I know however, that my experience is similar to that of many other people who have sought a diagnosis for themselves or their children. Fortunately, since then, after dissemination of information and the fear of change has abated, my family including my in-laws have become much more accepting and supportive.
Regardless of the benefits of diagnosis for my sons, I am so glad that I received a diagnosis because now I have a means of understanding myself, which was very important to me. I wanted to know why I was different to most other people and now I know.
More Importantly, I like myself better now because I believe that my social challenges are paired with equally unique strengths. Refer to my post on ‘Autistic traits and ability’ for a more detailed explanation of this concept.
With more awareness of my poor social skills, I have been more consciously attempting to improve my basic conversation and social skills, which resulted in increased anxiety for me initially. I have also made slight adjustments in my appearance**, validate people’s feelings more (because feelings make sense because they exist and don’t need a logical explanation) and tend to mock social conventions less than I used to. However, I don’t believe my identity has been compromised. If fact, I have a better understanding of what matters to me and I am more outspoken about what I believe in.
In addition, I have learned so much about autism and it has helped me to have a better understanding of people generally, sometimes above and beyond typical assumptions that other people might make and I will cover this in my next post.
*I will refer to Autism Spectrum Disorder as ‘autism’ for the rest of this post because I am uncomfortable with the use of the term ‘disorder’.
**The activist in me is uncomfortable with the fact that I felt the need to change my appearance. However, essentially changing my appearance, in this instance, mean’t wearing ‘joggers with jeans’ less often and paying attention to what most other people wear so that I can copy those aspects that I am most comfortable with. Often, it is a case of ‘No, I’m not wearing that’, ‘No, not that’, ‘Ok maybe I could wear that sometimes’. I still don’t wear make-up and I wear my hair in a pony tail almost every day and I have no problem with the way other people chose to dress. In fact, I feel more comfortable around people who wear ‘joggers with jeans’.
1. Hatzenbuehler, M. L. Phelan, J.C. Link, B.G. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health 2013; 103(5):813-821
2. Butler, R.C and Gillis, J.M. The Impact of Lavels and Behaviors on the Stigmatization of Adults with Asperger’s Disorder. Journal of Autism and Developmental Disorders 2011; 41:741-749
3. Milacic-Vidojevic, I. Gligorovic, M. Dragojevic, N. Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry 2012; DOI: 10.1177/0020764012463298