What is autism?
Autism is a neurodevelopmental condition that affects how people interact with the world and communicate. Individuals with autism may experience:
- difficulties with social communication and interaction,
- repetitive and restrictive behaviours,
- heightened or reduced sensitivity to noise, touch, smells, or tastes, and
- highly focused interests or hobbies.
The National Autistic Society also notes that “a third of autistic people may have a learning disability”.
Significant progress has been made in the United Kingdom regarding autism awareness and support. However, further improvements are needed, particularly in ensuring the safety and well-being of young adults.
Autism: myth-busted?
There is a belief that autism has existed since time immemorial, as early as 1189. However, it may come as a surprise to many that autism, as we understand it today, was only recognised just over half a century ago when Leo Kanner first identified and named the condition.
In 1943, while the Second World War was still ongoing, the condition was referred to as Kanner Syndrome, or as Leo Kanner himself described it, early infantile autism. It was only recognised as a medical condition when experts began identifying specific patterns of what were then described as abnormal behaviour.
The National Autistic Society notes that, over the last half-century, knowledge about autism has expanded significantly through clinical work and medical research. The Society also states that an increasing number of people are now receiving diagnoses of autism.
So, how many people were originally thought to have Kanner Syndrome or early infantile autism? Leo Kanner himself could not provide an exact estimate but described the condition as rare. Over the next two decades, from 1943 to 1966, research into autism continued. Victor Lotter took up the mantle and conducted an epidemiological study in Middlesex, focusing on children who displayed symptoms described by Kanner. His research, published in 1966, found that nearly 5 in every 10,000 children had the condition.
Thirteen years later, in 1979, Judith Gould and Lorna Wing expanded on this research, studying the prevalence of autism and investigating whether children with an IQ below 70 were more or less likely to receive an autism diagnosis. Their findings confirmed Lotter’s results, again estimating that 5 in every 10,000 children were affected by Kanner Syndrome.
However, Gould and Wing’s research went further. They identified a larger group of children, estimated at around 15 per 10,000, who experienced:
- difficulties using their imagination,
- challenges with communication, and
- struggles with social interaction.
They coined the term triad of impairments and noted a repetitive, stereotyped pattern of activity. The National Autistic Society explains that although these children did not fit Kanner’s traditional definition of early childhood autism or typical autism, Gould and Wing found that they fell within a broader autism spectrum. Their research concluded that the total prevalence of autistic children with special needs in Camberwell was around 20 in every 10,000.
This research was later corroborated in 1986 when Christopher Gillberg conducted a similar study in Gothenburg, Sweden, and reported very similar figures for children with learning difficulties.
Journey through the 90s
Research conducted in 1944 by Hans Asperger identified children who exhibited behaviours similar to those described by Leo Kanner. However, Asperger also noted that these children had additional abilities, including grammatical language skills that were classified as superior or within the average range.
The National Autistic Society observed that the common denominator between Kanner Syndrome and Asperger Syndrome was the triad of impairments, which included:
- difficulties using imagination,
- challenges with communication, and
- struggles with social interaction.
In 1993, Christopher Gillberg and Stephan Ehlers conducted a study in mainstream schools in Gothenburg, aiming to determine the prevalence of Asperger Syndrome and other autism profiles in children with an IQ of 70 or above. Their findings showed that 36 in every 10,000 children were diagnosed with Asperger Syndrome, while a slightly lower rate of 35 in every 10,000 was recorded for children experiencing difficulties with social interaction.
The term Asperger Syndrome is no longer used as a diagnostic label because the broader term autism spectrum better captures the range of the condition. Additionally, the association between Hans Asperger and the Nazi regime, particularly his involvement in the euthanasia of disabled children during WWII, has led to widespread reconsideration of the term.
In the mid-1990s, Sula Wolff further corroborated the research of Gillberg and Ehlers by studying high-ability children who had difficulties with social interaction but did not fit neatly into the definition of the triad of impairments. Wolff described these children as being at the subtle end of the autism spectrum. She observed that many:
- develop into independent adults,
- marry, and
- possess exceptional gifts.
Wolff advocated for the inclusion of this group in autism research, as they often struggle within the education system. She stressed the importance of parents and teachers being able to:
- recognise,
- understand, and
- accept
their unique challenges.
Mid-noughties
As the mid-2000s progressed, further research was carried out by Gillian Baird, who examined children thought to be at risk of having undetected autism, difficulties with communication and socialisation, or a statement of special educational needs.
The study found that 38.9 per 10,000 children had childhood autism, while 77.2 per 10,000 were diagnosed with other conditions on the autism spectrum. Combined, this gave an overall figure of 116 per 10,000.
However, Baird found very few children diagnosed with Asperger’s Syndrome and noted that some children in mainstream schools without a statement of special educational needs may have been overlooked due to the selection criteria.
Adult autism
So, what is the situation for adults with autism?
The National Autistic Society highlighted findings from the Adult Psychiatric Morbidity Survey (APMS), which in 2007 revealed that 1% of the examined cohort were autistic, as noted by Brugha in 2009.
In 2012, the UK Government’s Department of Health provided funding for an extension of the APMS study to investigate the number of autistic adults who had not been included in the original 2007 research. This included individuals with complex medical conditions and those living in residential care.
The study was led by Professor Terry Brugha from the University of Leicester, who found that 1.1% of the population in England are autistic.
No more work to do on autism? Job done?
So, is all the work on autism complete? Is there nothing more to be done? The National Autistic Society certainly doesn’t think so. It states that the United Kingdom still has a long way to go in its journey towards creating a world that works for autistic people.
One campaigner who shares this view is Conahleigh Clarke, who is calling for community programmes to be established for autistic young adults in the North West, particularly in the New Ferry area. Clarke argues that there is a lack of available and suitable services for autistic residents in New Ferry, Wirral. The campaigner advocates for social involvement opportunities tailored to the physical and emotional needs of young adults with autism.
Clarke also raises concerns about the vulnerability of autistic children, warning that they are at risk of falling prey to threats, blackmail, and online scams. The campaigner is urging authorities to expand specialist autism services to better support those affected.
The Wirral All-Age Autism Strategy, which includes the New Ferry area, aims to ensure that people of all ages in Wirral can maximise their potential and live full and active lives in a society that accepts and understands them. Under this vision, autistic individuals and their carers should have access to diagnosis and support when needed and be able to rely on mainstream public services to treat them fairly as individuals.
The strategy prioritises:
- Providing the right information and support
- Enabling autistic people to live fulfilling lives, with access to:
- education,
- employment,
- volunteering, and
- social opportunities
- Ensuring their safety and protection
However, campaigners argue that these commitments are not being fully met in this case.
Exaggerated claim?
Clarke claims that “1 in 59 children are living with autism.” However, this statistic does not appear to be supported by research conducted over the past five decades by some of the most respected professionals in the field of autism. Their findings suggest that the actual figure is closer to 0.01%.
What do campaigners hope to achieve?
Conahleigh Clarke is calling on local authorities and government health departments to establish programmes and services that validate the experiences of young adults with autism and meet their needs.
Currently, a number of support options are available for autistic individuals, as outlined by the Cheshire and Wirral Partnership NHS Foundation Autism Hub, which provides a range of services.
One option is that workplaces can implement reasonable adjustments under the Equality Act 2010 to support autistic employees. Another option is a Care Act Assessment through the local authority. Additionally, there is the Care and Treatment Review under the Transforming Care Strategy, designed to ensure that autistic individuals and those with learning disabilities are not inappropriately admitted to hospital. Health commissioners and professionals are required to explore all possible alternatives to help individuals remain in their own homes wherever possible.
The NHS also states that if a person is classified as an inpatient, they are entitled to a Care and Treatment Review under the NHS Care and Treatment Review Policy.
If she has not already done so, Clarke may wish to explore these options further to address her concerns. It is unclear whether she has pursued these routes for her nephews.
What can I do?
If you would like to support the campaign to urge the authorities in New Ferry, Wirral, in the North West of England, to do more for autistic people and create a community that better supports them, consider signing Conahleigh’s petition.
There are also many resources available to support both autistic individuals and their carers. Anyone in need of assistance should reach out to the Autism Hub, which offers a wide range of support services.
At the time of writing, the petition is just six signatures away from reaching 70, so additional support would be greatly appreciated.
While attitudes towards autism have evolved since the 1940s, and understanding of the condition has improved significantly, campaigners in New Ferry believe there is still a need for a dedicated space where autistic people can receive proper assistance and support. Signing the petition and raising funds for the campaign would be a valuable step towards making this a reality.
