Shining a light on aspects of autism

February 18, 2020

Image created by Max Ferreira

Exposure’s autistic author, Max Ferreira explores issues that affect young people with autism, past and present

I spent the first five years of my life not speaking. With the support of my very loving family, and encouragement from my teachers at Livingstone School, in the Kingfisher provision unit, gradually my speech came together.

By the time I was 13 I found communicating verbally much easier. Now, at 23, I embrace my diagnosis of High-Functioning Autism.

Autism Spectrum Disorder (ASD) is a lifelong developmental disability that affects more than 1 in 100 people in the UK. It refers to a broad range of symptoms characterised by challenges with repetitive behaviours, social skills, speech and nonverbal communication.

During my research I discovered that in 1911 Swiss Psychiatrist, Eugen Bleuler, first used ‘autism’ as a word to describe a long-term mental health condition, which today we would call schizophrenia.

In 1924 at a clinic in Moscow, a gifted young doctor, Grunya Efimovna Sukhareva, made headway with a 12-year-old boy she was treating, who was suffering from anxiety and frequent stomachaches. Sukhareva keenly observed that the young boy was highly intelligent and enjoyed analytical conversation. He never played with toys and taught himself to read by the age of five and spent his days reading everything he could.

Although her diagnosis was overlooked at the time, Sukhareva described the young boy as “an introverted type, with an autistic proclivity into himself.” She was the first child psychiatrist to publish a detailed description of autistic symptoms in 1925.

18 years after these discoveries, Austrian psychiatrist Leo Kanner characterised autism as a “social and emotional genetic disorder” and named it Early Infantile Autism. He examined a group of 11 children at John Hopkins Hospital in America, noting features like acute sensitivity to stimuli, social interaction difficulties and problems adapting to change.

As early as 1925, a young gifted female, Dr Grunya Sukhareva published a detailed description of autistic symptoms

Austrian paediatrician Hans Asperger was also researching children with a similar set of challenges in the same period. He named the condition Autistic Psychopathy, with its most apparent symptom being social isolation.

Hans Asperger, as a child, presented some features of the condition, such as social remoteness, highly focused interest in a single topic and overly formal language. The condition was later named after him: Asperger Syndrome.

After World War II (1939-45) there were a lot of theories and confusion around the word autism. One of the most surprising, inaccurate and frankly, I think, ridiculous findings, was from Austrian psychologist, Bruno Bettelheim. He believed that autistic behaviour in children, rooted from the lack of love and warmth from their mothers. He coined the phrase ‘refrigerator mothers’ to describe these mums.

Between the late 1960s and mid 1970s, autism was slowly gaining recognition as a type of learning difficulty. In 1962 the National Autistic Society was set up to provide help to parents of autistic children.

Despite the charity working hard to support autistic people, many were still struggling to get the right assistance in education; experiencing lack of understanding, bullying and social difficulties.

By the late 1980s, the term Early Infantile Autism was renamed Autism Spectrum Disorder (ASD). Some labels used within the spectrum are: Asperger Syndrome, High Functioning Autism, Mild Learning Difficulty and Severe Autism.

In 2009 Dame Cheryl Gillan MP, formed the Autism Act with the National Autistic Society and other charities. It is the only Act of Parliament dedicated to improving support and services for people with one specific disability.

Between the late 1960s and mid 1970s, autism was slowly gaining recognition as a type of learning difficulty

The Autism Act has provided some needed changes. It makes sure that every local council follows strict guidelines to increase and improve access to diagnostic assessments. It also specifies that health and social care services working with autistic people must take into account the additional needs they have as a result of their autism. These legal protections weren’t available to autistic people a decade ago.

If I’d been born in the early 20th Century my life could have been very different. It would have been extremely difficult trying to succeed in education without appropriate support and go on to become an independent adult.

I was fascinated to find out that Charles Dickens made careful notes about his own behaviour and experiences when developing his character Barnaby, in his novel ‘Barnaby Rudge’. Barnaby had some autistic traits. He was often portrayed being anxious, restless, excitable and unable to socialise. He was also sensitive to noise and light.

Could Charles Dickens have been autistic? I think so, but he lived at least 100 years prior to any clear understanding of the developmental disorder.

Even today research is still being carried out to identify causes of autism. At the moment it has been demonstrated that there is no single explanation. Some of the suggested factors for autism include: being born prematurely, genetic variation and having family history of autism.

While people with autism have a serious disability, which can interfere with every area of life, there can also be many positive aspects. The three below are the ones I most identify with:

  • Autistic people rarely lie. If a person with autism says you look terrific you can be pretty sure you’re having a good hair day!
  • People on the autism spectrum live in the moment, truly attending to the sensory input that surrounds them;
  • Autistic people are passionate: spending the time, energy, and imagination necessary to truly master their area of interest. I am an avid trainspotter. I am passionate about steam trains.

If you want confidential expert advice and support for autistic people, their families and friends then do check out the National Autistic Society.

Now working in retail, Max Ferreira is a creative author. A regular at Exposure his autism helps him develop special creative ideas. He has published a series of stories about his experience with autism available on Kindle.