Shock, Shame and Self-acceptance: A Tale of Autism Diagnosis

Being diagnosed with with an autism spectrum condition is a hugely personal experience. Each individual will react differently to the news of the diagnosis.

I myself, being only seven years old at the time, remember very little concerning the circumstances of my diagnosis. I vaguely recollect being asked a number of questions that at the time seemed strange to me. Following this assessment my parents later came to tell me that I had a condition known as Asperger Syndrome, which at the time meant nothing to me. Even though I had few friends and indulged excessively in the same repetitive interests, I most certainly did not identify myself as ‘different’ growing up.

When I asked my parents about what having Aspergers meant, they told me that I saw the world ‘through a different lens’. It was, in spite of its lack of detail, a good answer for a young child to hear. It made me aware that I was a bit different without making me feel inadequate in any way, encouraging me to take an interest in learning more about my condition when I was old enough to understand the implications.

Because I was diagnosed at a relatively young age, support was put in place during my time at school and I was able to receive some recognition from staff.

Others, however, have not been so fortunate as to have access to an early diagnosis. Many live for a significant amount of time unaware of their diagnosis. It is not uncommon for people on the spectrum to be unaware that they are autistic until well into adulthood and later life. Some live their entire lives without ever being recognised as having an autism spectrum condition.

For many, news of a diagnosis may bring about a huge sense of relief. Suddenly things begin to make sense for the individual: there is both a reason and a name for their ‘different’ behaviours and approach to the world. They can now live a more fulfilling life with the new understanding of self that they have attained. A diagnosis may also elicit understanding and support from others, affecting a relationship with a boss, colleague, family member, friend or partner in a positive way. So many questions are answered with one word: autism.

In other cases, however, a diagnosis may result in grief and/or an unexpected shock for the individual. Often the person diagnosed may feel frustrated knowing that problems throughout their earlier life might have been prevented had they known about their condition sooner. To others it may come as an entirely unwelcome surprise: they may never have associated themselves with autism and they might have some very false ideas about what autism is, based on what they have seen or read from the media. They may also fear the supposed stigma which (unfortunately) exists in some places in society, worrying about whether the people in their life will accept them or view them in a new, unwanted light.

Because the autism spectrum encompasses such a wide range of people with different abilities, it is easily misunderstood, with higher functioning autistic people (or people with Aspergers) sometimes being labelled as awkward geniuses and those who are lower functioning being viewed as people who are in constant need of care and special attention. Whilst there is some basis in fact for these stereotypes, in reality there is a very large ‘grey area’ , since every autistic individual is affected differently. Alas, this very blessing, which is part of what makes autistic people so interesting, is one of the reasons why autism is often so hard for neurotypical (non-autistic) people to understand.

Regardless of whether they are happy or not, eventually the diagnosed individual has to face the facts: they are autistic. Armed with this knowledge, they must make the best of their circumstances. Knowing who to tell and when to disclose their condition is a key issue. An individual’s own discretion and personal preference are of paramount importance in this situation, and I believe it should be left to them alone to decide who receives the information (provided, of course, that they are of an age where they are capable of making their own adult-level decisions).

A diagnosis of autism can be life-changing and I believe that it is a step in a positive direction. The world is more aware of autism than it has ever been, but raising acceptance levels for autistic individuals is crucial.  Notably, many females (far more so than males) go undiagnosed because of the cliche of autism being primarily associated with men. Furthermore, it is believed that autism affects females differently. Many females are more skilful when it comes to ‘masking’* their autistic traits than their male counterparts. There is also a disparity in the amount of people diagnosed with autism in non-western cultures, perhaps due to a lack of awareness of the condition and or/resources.

If you are autistic, it is important to remember that you are not alone. Autism brings with it a range of talents which, in many cases, outweigh the problems that can accompany the condition.

Peace and love to all my autistic and non-autistic friends,

Joe

*Masking is a term used in the autistic community to describe a person who is attempting to hide what they consider to be their ‘obvious’ autistic traits. They may be doing this as a way of trying to fit in, and may not even be aware that they are doing it or that they are on the spectrum.

 

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