Autism Spectrum Disorder and Languishing in Limbo for a Diagnosis

by Celeste Pearce

Already in a world that can be difficult to comprehend, is it fair to make people wait years for a diagnosis? And what are the detrimental affects on those who have had to wait for answers to their self doubt – what is autism and how is it characterised?

“My autistic self was screaming to be heard but the louder it shouted the more incorrect labels I was given,” Carrie Bedwith-Fellows

Autism Spectrum Disorder is a developmental disorder which affects communication, behaviour and how one interacts with the world around them. Some of the behaviours and characteristics associated with autism are stimming, strong desires for sameness and routine, repetition and hypersensitivity or a dulled sensitivity to one or more of their senses.

The Effects of Misdiagnosis

There are around 700,000 adults and children in the UK with ASD – making up 1 percent of the population. It is well documented that a failure to diagnose ASD can have catastrophic and long-lasting affects which widely range from, missing out on education, as 45% of children were excluded from school (Ambitious About Autism, 2016) and on a personal level, not understanding themselves or why they respond in certain ways.

In her Ted Talk, Carrie Bedwith-Fellows tells the audience of her life and struggles of being continuously mis-diagnosed and mis-understood.

“My autistic self was screaming to be heard but the louder it shouted the more incorrect labels I was given – bi-polar disorder, borderline personality disorder, depression, mixed anxiety disorder… She says: “The misdiagnoses piled up because my doctors had no idea I was autistic, because I’d learnt to mask it so brilliantly – we are taught at a young age how to present ourselves, flapping our hands and tapping our head is not socially acceptable, so we’re not encouraged to do those things.” 

These behaviours are known as stimming and used as a protective response to over-stimulation. They can be used as calming strategies, particularly when people with ASD are exposed to less predictable environmental stimuli. Societies overbearing desire for ‘normality’, encourages people with ASD to mimic learnt behaviours to ‘fit in’, making it more difficult to recognise that they have ASD, for both themselves and practitioners.

“People are unaware they are teaching their children to mask, and they are unaware of how much danger this causes to our self-identity.” –Beckwith-Fellows says.

The detrimental effects of preventing these behaviours can be the cause of severe anxiety and by not normalising these methods of calming can only cause unimaginable distress. This type of self-oppression, along with communication barriers are some of the factors contributing to serious implications with depression and suicidal thoughts and tendencies.

 “It is more common for autistic people to think about suicide, and die by it, than the general population” according to Autistica.

I spoke to Eloise, a mental health nurse, who believes that one possible way to combat people slipping through the net, would be to:

“Increase resources for mental health in primary care settings, because at current someone who is having difficulties, their first point of contact will be with a GP who has limited time and expertise in mental health.”

With this lack of expertise at the first port of call, the chances of misdiagnosis and/or a late one is worse. With the lack of detection, people experience consequential delays in identification, pinpointing and access to specialist services. As Howard recently discovered when seeking support from his university.

“After a professional suggesting to me that I was autistic, I felt this renewed sense of self and understanding. It helped to abate the accumulation of negativity that had built up over the years of confusion and the sense of not quite knowing myself. I reached out for some specialist support to aide me in my studies, only to be told that I had to have an official diagnosis to access these services, and the waiting time for such a diagnosis, due to cuts, is three years, rendering the chance of specialised support whilst studying, nil.”

In my investigations, several people reported the waiting time for a referral is over three years. Someone I spoke to explained that due to cuts, Manchester is only referring 30 people a year. Not only are people with ASD expected to amend their behaviours and traits, pandering to societal norms, they are also expected to wait years for a diagnosis, the support they need and deserve.

Although for some a diagnosis is crucial in freeing them up to live a full life, for others, it’s simply not worth it. Since autism is seen as a spectrum condition the stigma has shed a little, but for some, the diagnosis comes as a double-edged sword and although they realise they’re potentially missing out on support and greater understanding, it’s still not worth the label they will be handed.

Frank said: “Having to live under the stigma of having an actual disorder or syndrome, I don’t think would be beneficial. Like what would be the difference? It doesn’t change anything. It’s almost as though something is now wrong with you and its nothing you can even change.”

“Wanting to be free. Wanting to be me. Trying to make people see and accept the real me.” Scott Lentine

© 2021

This Post Has One Comment

  1. Caroline

    I found this article interesting. As a primary school teacher, parents often ask me for initial advice about seeking a diagnosis for suspected autism. The pros and cons of labelling are therefore helpful to understand. Also, I am an Emotional Freedom ‘tapping’ therapist so I wish gentle tapping could become accepted as positive behaviour for anyone that needs to calm themselves, to self regulate and to help quieten their mind.

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