autism and ableism in medicine & media

jula, sneha, and aysel's SSU2 project about how ableism towards autistic people affects their lives within the context of media and healthcare settings.

why did we make this website?

what are our aims?

We made this website because we want to talk about how autism has been presented and demonised in various different settings.Since the concept of Autism was first introduced into Western Society in 1943, by a well-known Psychiatrist and Physician, Leo Kanner, as a neurodevelopmental disorder- the way this condition has been perceived has varied greatly. Despite Kanner noticing that any ‘emotional disturbance’ caused by autism would not have any effect on the patient’s cognitive abilities, unfortunately, there have been individuals who see autism as a ‘fault’. Therefore, the cognitive advantages such as exceedingly excellent memory in some cases, as well as increased intelligence are thus dismissed and belittled due to the initial stigma around the condition itself. Hence the birth of slurs, which is commonly seen to happen after any stigmatised topic in society, from homosexuality to anything that a large proportion of a population can’t agree to. Even though we as people are getting much better at understanding empathy and respect, the stigma still continues enabling for discrimination and isolation to occur, which is our aim to finally put a halt to.

As a campaign, we aim that this website can be used as an educational resource for readers to learn more about the history and timeline of the discovery of autism, alongside the idea of autism as a spectrum. We also aim to provide information on the felt and enacted stigmas regarding the neurological condition. We have therefore created this website in the hope to move forward as a society who can now better understand the ways in which individuals are affected by autism and the community around them. Due to autism still unfortunately having negative connotations in parts of society, we are hoping to raise awareness and reduce the prejudice that people with neurodivergency, specifically autism, face. The ultimate goal would be to finally see that this misconception in societies all around the world no longer exists and that the neurodivergent minority group is no longer isolated.

what is autism?

Autism, medically known as Autism Spectrum Disorder (ASD), is a lifelong developmental disability. As the name suggests, it is a spectrum disorder, which means that autism affects each autistic individual in a unique way. The amount of care required by an autistic person as a result of the disability can be expressed in terms of support needs- autistic people with high support needs may require full time care, while autistic people with low support needs may be able to sustain themselves independently for their entire lives. Some common experiences of people with autism include speech delays, fixations on orders, routines & repetitions, difficulty understanding non-verbal cues, and heightened emotional reactions. Autism is also often accompanied by gastrointestinal issues and psychiatric concerns such as anxiety. With that being said, it is possible for autistic people to experience none of the common symptoms, and it is also possible to have all the common symptoms but not be autistic.Autism can be caused by both genetic and environmental factors. It often runs in families, however researchers have not found genes that are solely responsible for autism. Rather, it occurs due to a combination of numerous genetic factors. Environmental factors include the age of both parents at the time of conception, or birth complications such as severely premature births. It is important to note that these are factors BEFORE the baby is born- autism can not be caused by postnatal factors such as vaccines, which will be discussed later. The aforementioned factors cause changes in the development of the baby’s brain, which could affect how nerve cells communicate, or even how whole brain regions communicate. The differences in how the factors affect brain development are what leads to the variety of presentations of autism in people.Autism affects 1-2% of people in the UK as per research in 2021 (3). What’s more interesting to note, however, is how autism diagnosis has changed over time. It was found that in the UK, there was a “787% exponential increase in recorded incidence of autism diagnoses between 1998 and 2018” (4). The most notable increases were diagnoses in adults and in females. This increase reflects that healthcare has become better at identifying the differences in presentations of autism, and that the method of diagnosis has evolved. In the UK, diagnoses are officially conducted via an autism assessment by autism specialists. The specialists will observe the patient’s interactions with others, their speech patterns, their responses to change, and other indications that the patient could be autistic. However, because the method of diagnosis is observational and not empirical, the specialist’s biases have the potential to interfere with the diagnosis. This could be why autism is diagnosed at much higher rates in males than females, and in black people than white people. It is important to understand how the symptoms of autism intersect with racial and gender stereotypes, and how these intersections affect access to medical care.

illness as metaphor

Using illnesses as a metaphor for bad situations, or as synonymous with ‘bad’ is a phenomenon widely seen for all illnesses. Susan Sontag’s books Illness as Metaphor and Illness as Metaphor: AIDS as a metaphor also explore this. It is important not to use neurological conditions, mental illnesses and physical illness in this way, and autism is not an exception. When people use the word ‘autistic’ and slurs denominated for autistic people as a derogatory term it paints autism in a way that it shouldn’t be, as something wrong, as the person as bad.

intersectionality

Although discrimination against autistic individuals can be reasoned as purely discrimination against autism, it is important to note the links between being autistic and being part of other marginalised groups. This is a concept known as intersectionality (link to definition of intersectionality). In terms of autism, studies (link to study) show that there is a link between being autistic, being part of the LGBT+ community and having other mental illnesses. Because of this, we need to think about the bigger picture; suicide rates for transgender people (link to source) show that 40% of transgender teenagers try to commit suicide, and this paired with comorbid mental illnesses that have suicidal thoughts or tendencies means that autistic people are vulnerable to suicide.

discrimination in healthcare

Autistic people can face discrimination in virtually all areas of their lives. The National Autistic Society, a UK based organisation that provides support to autistic people, has reported that autistic people in the UK have many of their basic human rights infringed upon as a result of discrimination. In their private & social lives, they are often victims of abuse and fraud (such as theft). In the education sector, it is seen that 1-in-5 autistic children experience exclusion in school. Even when it comes to work, only 15% of autistic adults in the UK have full-time employment, and 50% of UK managers claim that they would not hire a neurodivergent candidate (1, 2). This reveals that this is a systematic problem- regardless of the autistic person’s qualifications, the manager’s misconceptions of autism could hold the candidate back from work.Due to the challenges that autistic people face in terms of communication & change in routine, they often find hospitals and clinics to be especially stressful spaces, which compromises their care. Some ways in which healthcare may not be inclusive to autistic people include not giving them enough time to process information, complicated treatments, not having different sources of information such as Easy Read versions of posters, lack of psychological support, and overstimulation in hospitals due to lighting, noise, textures of bed linens, etc. There is also a lack of education amongst staff on what they can do to help autistic patients- almost 40% of GPs in the UK in 2019 reported that they had no formal training on supporting autistic patients, and did not feel confident in their abilities to do so (6). There needs to be an increase in awareness amongst healthcare staff for what they can do to make autistic people more comfortable receiving healthcare, and perhaps specialised staff should be available in hospitals to bridge the communication barrier.