by Gill Crea
Every 2nd of April is Wold Autism Day, but what does this mean? World autism day has been celebrated since 2007, when the United Nations General Assembly designated it as the day to celebrate and promote awareness of autism. However, we have moved on from awareness, to try and gain acceptance for this neurological difference. To understand why acceptance is needed, let’s look at the history of Autism.
A (very) brief history of Autism
Autism was first coined in 1911 by the German psychiatrist Eugen Bleuler to describe a symptom of the most severe cases of schizophrenia, a concept he had also created, which caused the individual to turn inward to escape life, and the term kept this meaning for over 30 years.
In 1925 the Soviet child psychiatrist Grunya Sukhareva wrote a paper on what she described as Schizoid Personality Disorder, but her work aligned with the DSM-5 definition of Autism, and she continued her research into the condition and its presentation in girls. Her work was sadly not discovered by the rest of the world until much later, in 1996, when her translated work was published by Sula Wolff.
By 1943, Leo Kenner described a pattern of abnormal behaviour, something he thought was rare, also known as early infantile autism. 22 years later Vitor Lottar (1965) published his epidemiological study of children with this behaviour pattern, with an overall prevalence of 4.5 per 10,000 children with this condition.
in 1979 Lorna Wing and Judith Gould examined the prevalence of autism, using Kanner’s definition, with children known to have special needs in the former borough of Camberwell in London. They identified the Triad of impairments (Social interaction, Communication, and imagination), and examined the broader spectrum of autism outside of Kenner’s description. In this study, they found the prevalence of autism was 20 in every 10,000 children. One point which should be noted is that this study had female and male children. It also introduced the concept of a spectrum for autism, with individuals demonstrating different areas of strengths or weaknesses
By 1993, the concept of Aspergers emerges from the studies of Hans Aspergers. Aspergers is problematic in the autistic community due to many factors, including his experiments on autistic children (you can read more about this here). However, Asperger’s results were similar to Kanner’s, but the children had an excellent vocabulary. In 1993, Ehlers and Gilbery published a further study to examine the prevalence of Aspergers and other autistic profiles in children with an IQ of 70 and over. They calculated a result of 36 children in every 10,00 who definitely fit the Aspergers profiles, with another 35 per 10,000 children who had social difficulties. The teachers of these children had recognised social or educational differences in social or educational in these childen, but had been unable to decipher the reason for it.
In 1994, Aspergers was included in DSM-4 as a separate subcategory of autism spectrum disorder. However, the DSM-5 was released in 2013, and combined all the subcategories of autism into a single diagnostic entity called the “autism spectrum disorder.” This was done to address inconsistencies in the criteria used in diagnosis.
New research by the UCL suggests that the prevalence of Autism is twice as high as once thought, they estimate of a total autistic population to over 1.2million – approaching double the figure of 700,000 cited by the government for the entirety of the UK (read this here)
This is a very brief history of the medicalised model of autism, and as you can see, we have been aware of autism for at least a hundred years!
Autism Awareness or Acceptance?
You have probably seen all the posts on social media sites about Autism Awareness month, but many autism advocates (myself included) have use the term Autism Acceptance month. As Lyric Holmans, from the NeuroDivergent Rebel blog, explains, Awareness is knowing autism exists, Acceptance embraces the person as they are. You can read more of her thoughts on the matter here. As we have been promoting awareness for 17 years, i think we can say we are aware that autism exists.
The spectrum of autism is a vast one, and by negating the experiences autistic people face by not accepting that autism is a reality for many, we are doing autistic people a disservice. Many autistic people require adjustments to be able to live in a world which has been designed for neurotypical people. If we are only aware of autism, these adjustments may not be readily available, by accepting autism we can allow this to permeate into every aspect of their lives.
Words really do matter, and to truly be an ally of the autistic person we must accept the autistic experience, across the spectrum. Autistic people face discrimination and barriers across all areas of their lives, so we should celebrate autistic pride, and nurture the autistic people in our lives. Acceptance, not Awareness, to only want awareness for autism fails those who are autistic. We need to accept and celebrate our differences and similarities, to create a much kinder world.
If you need our help, or would like to visit one of our free activity groups for all neurodiverse and disabled children, please contact us here
Gill Crea is mum to two wonderful autistic children, and is also neurodiverse