Stuff you probably didn’t know about Autism Spectrum Disorder, unless you’re autistic!

Trigger warning for all autistic people: the following article mentions the below topics:

  • Functional labels
  • Aspergers Syndrome and its beginning history in WWII, including original derogatory terms and research by Hans Asperger
  • Past and present eugenics research
  • ABA
  • An organisation that shall not be named…but we all know which one it is!

Please note that the following article has been primarily written for those who are neurotypical (non-autistic) and who need to be educated on the history, correct terminology and the current socio-political initiatives that the autistic community is striving to change.

This article acknowledges the tireless work that the autistic community does, especially in the face of considerable ableist attitudes, stereotypes, misconceptions and unnecessary barriers to progress.

One brick at a time!

Autistic aligned terminology:

  • Disability vs ‘Diffability
    • Some autistic adults prefer the term ‘diffability’ rather than disability, and other autistic adults prefer disability rather than ‘diffability’.
    • Use disability until you know what the autistic person prefers. Both are acceptable to use, if used by autistic people. Non-autistic people should use the term that an autistic person prefers (remember it’s not about you).
    • Disability term:
      • Preference for ‘disability’ term – usually the only way advocacy and supports/services can currently be utilized.
      • Those who identify with the term ‘disability’ use the term in accordance with the official diagnosis for Autism Spectrum Disorder in DSM-V.
      • The term can fit more appropriately with the experience of those who struggle with day-to-day life, advocacy, supports, feeling isolated etc.
    • Diffability term:
      • Sometimes preferred over ‘disability’ term, to relate to the way in which those on the spectrum think and interact differently, as well as, how they may experience the world differently.
      • Commonly used with the unofficial term of ‘neurodiversity’, which is also starting to be used by some professionals all over the world.
      • Some see the environment as the disability, rather than disability being associated with being autistic (for example, due to lack of understanding/inclusion/support/discrimination etc.).
  • Aspergers vs Autistic
    • History of ‘Aspergers Syndrome’ (no longer used in DSM-V) has a very controversial history in the autistic community.
    • Many autistic adults refuse to use the terms ‘asperger’s syndrome’ or ‘aspie’ (derivative of asperger’s syndrome).
    • The reason for this is that in 1938 Hans Asperger, who was a member of the Nazi Party, termed children who were autistic as “autistic psychopaths” and developed the term ‘Aspergers Syndrome’.
    • Research exists to suggest that Hans Asperger was aligned with the Nazi regimes initiatives regarding disability. I don’t want to express more about this here, as it’s too upsetting, however more information can be found here regarding one of the research papers: Czech, H. Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism 9, 1–43 (2018). https://doi.org/10.1186/s13229-018-0208-6).
  •  Appropriate terms
    • Autistic, autistic person, autistic individual.
    • Some autistic people still prefer the term ‘aspie’ – again it’s at the initiative and use of the autistic person.
    • Avoid terms that say ‘<insert name> has autism’. Preferred term is “<insert name> is autistic”.
    • Do not describe autistic people as ‘suffering with autism’.
    • The term ‘on the spectrum’ is also okay, if used by the autistic person.
  • Functional Labels
    • Autistic individuals and autistic led initiatives are moving away from the use of functional labels, for example ‘high functioning’ and ‘low functioning’.
    • More appropriate terminology is framed around the level of support that autistic people may require.
    • If in doubt, the best term to use as always is ‘autistic’ without including the functional label.
  • Current socio-political initiatives/views
    • Autistic adults are heavily aligned to autistic led initiatives (organisations run by autistic people/actively including autistic people).
    • Many autistic adults and autistic advocacy groups are against ‘light it up blue’ and the puzzle piece logo often associated with autism, which has its roots in an organisation that shall not be named.
    • This organisation has a long history of very controversial practices, which has caused the autistic community a significant amount of pain over the years, including sponsoring research aimed at eradicating/curing autism.
    • While this organisation has apparently moved away from some past practices, the autistic community is very suspicious of this organisation and outspoken against many of its maintained practices and initiatives.
    • Puzzle piece logo is very unpopular due to the visual premise being that there is a piece missing or a gap (usually displayed visually).
    • ‘Light it up blue’ initiatives is unpopular due to the past and current gendered focus of autism in boys and men. Currently there is a 4:1 ratio of boys to girls who receive diagnosis worldwide. Many argue that this is not a male dominated disability or diffability.
    • It is very unpopular to associate autism with either blue or the puzzle piece within the autistic community, despite many organisations still doing this.
    • The autistic community wants it to be either ‘light it up red’ or ‘light it up gold’, alongside the infinity symbol (rainbow, gold or red).
    • Many teenage girls and women are misdiagnosed and it takes on average at least 1 year at the minimum and multiple medical practitioners, before the correct diagnosis is given. This is usually after an intensive, traumatic, and cost exhaustive process and the person’s own research.
    • Autistic women find access to diagnosis hindered with sexism and are often laughed at by doctors and other medical professionals when they go to request information on seeking an assessment for ASD. This is a very common experience.
    • Women and girls are underrepresented in most autistic studies and research.
    • There are concerns of women and girls having to present “worse symptoms” than boys and men who are at the same diagnosis ‘level’ (for example, ASD-1, ASD-2). 
    • Eugenics research
      • Currently very controversial in the autistic community and a recent study has come under enormous international fire over the ethical rationale for standalone DNA research in autistic people.
      • This is mainly because autistic people are concerned regarding history of eradication principles, research and practice, which have the potential to be used in the future.
      • The CDC currently states that there is “no cure for autism yet” – the autistic community are against medical searches for “cures”.
      • The autistic community’s stance is “nothing about us, without us”.
    • The autistic community are generally against “Autism Awareness month” and would like it changed to “Autistic Acceptance month”. The premise being that autistic initiatives should be about accepting autism.
    • Many organisations that do ‘Autism Awareness month” also do ‘light it up blue’ and the puzzle piece logo.
  • ABA
    • Many autistic people are against ABA.
    • ABA stands for Applied Behaviour Analysis Therapy and it is commonly used by Psychologists and Psychiatrists as the main therapy for autistic children and adults.
    • ABA seeks to change natural autistic behaviours/traits in those who are autistic (for example, stimming).
    • The reason autistic people are against ABA is because you cannot cure/treat autism and autistic people should have the right to be themselves and express their natural behaviours.
    • Masking is a technique taught by ABA practitioners to “help” autistic people change their behaviour to blend in, which can result in trauma, burnout and fatigue.
    • Autistic adults who have received ABA therapy as children and young adults, speak of the trauma that they have endured as a result.
    • ABA first used principles of punishment to stop autistic people behaving ‘autistically’.
    • There are now some autistic led psychology services, who are against ABA and do not practice this form of “therapy” on autistic children/adults.
    • There is a lack of research for support and advocacy for the autistic community. Most of the research is genetic and ‘treatment’ focused (i.e., what genes may contribute to autism and how it can be ‘treated’), and therefore the majority of money is not spent where it is very much needed (providing supports and inclusive advocacy services to those on the spectrum…and educating neurotypicals on how to listen more and be inclusive).
  • Stimming
    • Stimming is a natural behaviour.
    • Most common stereotype is of autistic people flapping their arms about. Some autistic people do this and this is not the most common stim.
    • Stimming is a repetitive, physical action done by autistic people, as a self-soothing measure or a response to stimuli (example, excitement).
    • Stimming is not bad and should not be stopped.
    • Stimming can often go unnoticed by others, when someone is stimming.
    • Stimming can be done by neurotypical (non-autistic people) as well, without them realising (i.e., tapping fingers together repetitively).
  • Autistic led organisations in Australia:
    • The ICAN Network
    • Yellow Ladybugs
    • Different Journeys
    • Spectrum Intersections
    • Spectrum Journeys
    • Aspie Rebels (18+)
  • Neurodiversity
    • A new term which is like an umbrella term for autism, ADHD, dyslexia, dyspraxia, dyscalculia, sensory processing disorder etc.
    • Is gaining popularity in the autistic community due to its association with the premise that, as there is biodiversity in nature, so too is there neuro-diversity in human brains.
  • Women
    • Autism can look different in boys and girls and in men and women, like that of ADHD.
    • Autistic women often are misdiagnosed, undiagnosed and commonly diagnosed late in life between the ages of 30-60.
    • Autistic women struggle with being heard and taken seriously within the medical practitioner space.
    • Receiving a diagnosis for autism is extremely difficult for girls and women (and costly), in comparison to boys and men who are often diagnosed in childhood/teens.
    • The diagnostic criteria and lack of practitioner knowledge, has come under enormous international criticism from autistic women, who are often left out of research and diagnostic criteria.
    • Autistic women can be undiagnosed because women are good at something called “masking”.
    • Autistic women can be “good” at eye-contact. This is often a masking effect. Sometimes autistic women will maintain eye-contact with limited blinking (this can be a sign that the masking is occurring because it’s a strain).
    • Autistic adults in general are starting to learn ‘un-masking’ – basically undoing years of traumatic social copying and performing to try and fit in and are now embracing their own natural tendencies.
    • There are many self-diagnosed women (autistic women who have not received an official diagnosis) due to the medical ableism present and the cost of the assessments).
    • Masking is:
      • A complex survival strategy for autistic people
      • Autistic people learn and copy from other’s behaviors and then copy those behaviors in public (like a performance)
      • In private, autistic people can often burnout from masking
      • Masking can cause a variety of health issues (stress, anxiety, exhaustion, etc.)
  • Myths and misconceptions
    • All autistic people act the same way/demonstrate similar behaviors
    • Autistic people aren’t social
    • Autistic people can’t maintain eye contact
    • All autistic people stim
    • Savant autism – all autistic people are geniuses
    • Autistic people lack empathy
    • “You don’t look autistic…”
    • “You don’t act autistic…”
    • “Everyone’s a little bit autistic…”
    • Autistic people don’t have friends/lack friends
  • There is far too much medical and social ableism and sexism when it comes to seeking a diagnosis for autism, receiving support and the burden of educating non-autistic people is an enormous task that autistic people face daily.
  • Autistic voices are often ignored and left out of the conversation. I mean how hard is it to change it from ‘light it up blue’ to ‘light it up red/gold’…not that hard!!!!
  • Ableism can take many forms and can also be very subtle. For example, my own experience in dealing with people before they know that I’m autistic, is that they speak at a normal pace and tone with me. If I then disclose that I’m autistic, sometimes they slow their voice right down, as though being autistic means that I’m somehow slow or can’t follow what they’re saying. It honestly is ridiculous to watch!

I hope by reading this article you are more informed, ready and willing to listen and help the autistic community advocate for much, much needed change!

The responsibility is not just ours – it’s yours too. And let’s face it, there’s a shit load of you out there. Please help us, to help you, to help the rest of you.

Published by Kath

Autistic, Mum, ADHD, Neurodivergent...probably from another planet.

3 thoughts on “Stuff you probably didn’t know about Autism Spectrum Disorder, unless you’re autistic!

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