Austim

Autism is a term used to describe a significant proportion of humans who overlap enough of certain traits. These traits are human traits, but are outside the typical range for most humans, either hyper (over) or hypo (under). Autistic people experience various prejudices and exclusions due to their diagnosis, differences, and societal stereotypes.

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In Brief

Medically speaking, Autism is a neurological condition that has a spectrum presentation. Autism is diagnosed based primarily on the deficit / disorder model, which highlights only the problems that an Autism brain has, which has the unfortunate side effect of both invalidating Autism Identity and Autism Strengths. In modern times, Autism has been added to the ICD and DSM as mental disorders, leading many people to mistakenly think that talking therapy can fix Autism.

Credit Matt Ratt

First of all, Autism itself needs no more fixing than other outlier groups of humans such as tall people, left handed people, and people with green eyes. People who are tall enough do need to be mindful of hitting their head, left handed people do need to manage living in a right handed world, and green eyed people often have cooccuring mild melatonin pigmentation which can lead to being easily sunburnt in sunny environments. What we are talking about here are accomodations for difference, not diagnosing disability.

Secondly, talking therapy by a properly educated therapist can be helpful in understanding the differences the particular Autistic personn’s brain works compared to the neurotypical, and how they can take advantage of those differences, sometimes compensating for deficits; learn how to compensate for how inflexible neurotypical people can be; and help the Autsitic person connect to their neurotype for both cultural and identity affirmation.

Secondly part 2. When we use therapy to “fix” Autism, it is akin to gay conversion therapy, where the assumption is that being Autistic or Gay is a choice and a wrong choice at that. To be clear, this is wrong and bad.

Autism is a Neurodivergence

Neurodivergence has been covered on this website elsewhere.

In brief, while no two people share the same neurology, the differences between brains can be mild, moderate or substantial. The most commonly found cluster of brain types is used medically as the reference brain type, and we refer to this as neurotypical. It is often falsely assumed to be the “correct” brain type, but is just simply the one we find more examples of, at around 30-50%. Considering this to be the “right” way to for human brains to exist is okin to saying that right handedness is correct, or that brown skin is natural and other skin tones are deformities, simply because they are the most common found in humans.

We explore the idea of Neurodivergence via a CPU analogy here.

Autism is the name we give to a rag tag group of Neurodivergent People who are fairly diverse from each other. Autistic People share a number of similar compensation strategies and challenges for there diverse different neurology. An educated assessor can use these similar externalised taits to recognise that the person being assessed has a neurological difference within the cluster that we call Autism.

Autism Traits and Spectrum Presentation

Labels are useful, so long as they don’t become traps. Recognising that you are Autistic means that you can use many of the strategies that have been developed to help manage challenging traits, benefit from your strengths, and compensate for society. Being misidentified, or medically misdiagnosed, can be very harmful. We cover the harms of the label trap further down in Stigma.

To facilitate medical staff to diagnose people with Autism Spectrum Disorder, a number of traits in common have been identified. These are not all of the Autism Traits, they are just the easiest for diagnosticians to identify. All Autism Traits are Human Traits, that is, there is nothing non-human about being Autistic, or having these traits. We also cover the stigma attached to this misunderstanding later.

When scientists measure human abilities, they define below average, average and above average based on statistics, usually using the normal distribution curve. The area under the curve (dark blue) is how much of the group is included in every section. The Average here is about 85% of people, that is, 85% of people’s “ability” in a trait is considered to be average. The number of people in the “above average” and “below average” sections under the dark blue line are considered unusual, but within the tolerance of the test. Outside of that, a person’s ability in that trait is considered abnormal, and often the result in finding “average” is discarded as an outlier (assuming a mistake in recording or testing).

Autism Traits are generally human traits that fall outside of Average, generally in the hyper or hypo range (although above and below average can be considered). Recall that the Medical Model is trying to fix things, so for a trait to be part of the diagnosis it is assumed to be a problem. So if that presentation of the trait is considered to be problematic, then it helps you get an Autism diagnosis. If you have managed to find a way to manage that trait or capitalise it, then it often isn’t considered part of your Autism diagnosis, even though it may be a part of your Autism Identity and neurology. We talk a bit more about this in the Diagnostic section.

Here is an example of a “Rainbow Diagnostic Graph” shared by DW on Quora.

Each piece of pie is considered to be the strength of problem in the presentation of this trait in a person. The traits titled here are mostly problematic and misleading. For example, Depression is not an Autistic Trait, but it can be an experience or co-occurring diagnosis to Autism, and is often coupled to the same root problem that Aggression and Anxiety is – limited spoons (internal resources) and the cost of managing in an environment that doesn’t support you.

The caution I’m trying to give you here is that these traits are what diagnosticians look for, because that is what they’ve been trained to do and it is easier for a technician to look for these presentations than to understand what it is to be Autistic; but they aren’t actually at the root of being Autistic. This is more about looking at how someone is not coping well due to being Autistic in an environment that is likely not inclusive for the Autistic person. When we change the environment to be inclusive, help with some medication, and upskill the Autistic person’s set of skills, most of these diagnostic traits disappear. That has not “fixed” the Autism, they still have their neurological differences. We have “fixed” the struggle that gets the person diagnosed.

Autism is not the struggle of difference, it is the difference in neurotype and interacting with people who are different to yourself (most often neurotypicals, but other neurotypes as well).

Autism is Old – A brief history

The worldwide prevalence of Autism in all populations between 2 to 5% informs us that Autism is not new, it has been a part of humanity for hundreds of thousands of years. Autism is a congenital neurological condition and also considered an identity. Autism was a word coined by German Psychiatrist Eugen Bleuler in 1911. The definition of Autism has changed a few times to its more contemporary and more inclusive definition, with a highlight change to the concept of neurodivergence in the late 1990s.

Almost nothing that Bleuler [LINK] used to explain his observations of a cohort of select people is relevant any more – because his assumptions are basically wrong. Bleuler also coined the term Schizophrenia, and he thought that Autism was a symptom of Schizophrenia, caused by an infantile wish to avoid unsatisfying reality and to replace them with fantasies and hallucinations. Autism etymology literally comes from the Greek Autos (self) and English ism (originally ismos, the state or action of) – translating essentially “selfish”. To be very clear on this, Autism is not Schizophrenia, nor it is a symptoms of Schizophrenia, and most people diagnosed with Autism are not actually selfish (although some are).

Hans Asperger identified, in 1943, in a cohort of over 200 children a pattern of behaviour and skills that seemed to lack empathy, struggles making friends, unidirectional conversation, strong preoccupation with special interests and awkward movements. Asperger recognise that these children often had strong intelligence despite the observed “selfishness” and “poor social” traits. Asperger described the children as “autistic psychopathy of childhood”, incorrectly assuming the children were non-empathetic. We now know that people diagnosed with Autism are generally hyper-empathetic rather than hypo-empathetic or absent of empathy. Empathetic people are not psychopaths, although it is not uncommon for autistic people to be mistaken as psychopaths.

Asperger described how 4 of his cohort were teaching him things about their special interest, referring to them as “his little teachers”. His works weren’t well known in English speaking medicine as he published solely in German, and translating to the more ubiquitous English was fairly rare. This meant that most of the world did not receive much benefit from Asperger’s ideas until much later.

Asperger effectively increased the definition of Autism, showing that Autism had a spectrum of presentations. In 1981 Lorna Wing proposed a new subtype of Autism which she called Asperger’s Syndrome, where the Autistic person was considered to be intelligent and fairly functional rather than the standard default of assuming an intellectual disability and dysfunctional. As a result, some Autistic people were given the diagnosis of Asperger’s Syndrome. This would later be wrapped up in more modern times as Autism Spectrum Disorder, where the emphasis was on the Spectrum experience of autism.

There is controversy around Hans Asperger’s writing, which was used by Nazi Germany to justify some of their actions. It was not clear whether Hans Asperger agreed with the Nazi party line, or was staying quiet to avoid being shot. Arguments have been made that Asperger was a Nazi sympathiser and as a result, Asperger’s Syndrome, as a diagnosis or as a way to self identify, has fallen out of favour. As a protocol, if someone self identifies with Asperger’s Syndrome (including “Aspie”), accept their self definition, but try to avoid suggesting that someone is Asperger’s, Aspie or similar.

Wing’s proposal was released only 1 year after Autism was added to the USA DSM III 1980, the third edition of Diagnostics and Statistics Manual of Mental Disorders. This had a mixed effect on how people saw Autism. On the one hand, more psychologists, paediatricians and psychiatrists became aware that Autism was actually a thing, despite it being first described in 1911. This also changed the thinking about Autism from a neurodevelopmental disorder, that is neurology, to a mental disorder, which many lay people synonymise with mental illness – these are not the same thing. Autistic people can have a co-occurring mental illness, and Autistic people can experience traits that are akin to mental illnesses such as social anxiety. Frequently the syndrome style traits can ease up with improved environments and better education, while co-occurring mental illness needs its own treatment plan that is Autism compatible.

To be clear, Autism is not a mental illness, Autism is not an intellectual disability. Autism can co-occur with a mental illness and or an intellectual disability. Most autistic people are not disabled, nor are they mentally ill.

Steve Silberman, in his book NeuroTribes 1999, credits Judy Singer, an Australian sociologist, with creating the term “neurodiversity”. Singer says she was inspired to the concept of biodiversity and applying it to neurology, where monodiversity is not so good, biodiversity is better, and mononeurology is also not so good, neurodiversity is better. Harvey Blume published the term “neurodiversity” in an article in 1998, a year prior to Silberman’s book, who later states that the term was in online spaces as early as 1996, such as InLv, which both Blume and Singer were writing. It is not clear who actually created the term, whether Silberman correctly identified the origin as Singer, or whether someone else used it first, or it co-evolved in the forum. Jim Sinclaire, in his 1993 speech “Don’t Mourn For Us” emphasised thinking of Autism as “a way of being”, stating “it is not possible to separate the person from the autism”. This emphasises that Autism is more of an identity than it is just a medical label.

As such, the protocol for language is identity, not person with. That is, I am autistic. I am not a person with autism. Autism is not a feature that turns on or off, or can be cured and removed. It is so much a part of who I am that it is not easy to tell the difference between me and autistic me.

Our current view of Autism is that it is a congenital neurological condition, often including some developmental delay when compared to neurotypical people. That is, you are born with an autistic brain, you don’t acquire it. While its basis is in neurology, it is also considered an identity as it affects your entire life, decision making process and interaction with other people.

Autism Diagnosis – Stupidly difficult and expensive

This is focused on Australia. Each country will have their own system. Many will look like this, but not all.

Who can diagnose Autism?

Informal diagnosis is valid for personal needs, and often other neurodivergent people are likely to point it out to you. If you have been told you are weird, and or you are a nerd, then likely you are Autistic. To help you feel that the use of the description “Autistic” is valid enough for you, you can do some online tests to see if they agree.

Here are three free online tests to consider:

  • Autism Spectrum Quotient [External Link]; this is a reasonably accurate test for common presentations of autism.
  • RAADS-R [External Link], The “Ritvo Autism Asperger Diagnostic Scale-Revised”, or RAADS-R is a fairly long and comprehensive assessment which is a bit more accurate, but does suffer from USA centric terminology and some stereotyping for Autism.
  • Cat-Q [External Link], The Cat-Q is good for people who find the above two do not indicate Autism. This test is trying to help you not give the answers you feel should be given because you are automatically giving the masked “what people expect of me” answers.

Informal assessments and self diagnosis is valid for those who are not in a privileged enough position to get a formal diagnosis. It can help you to understand yourself.

If you are likely to be involved in the medical system due to Autism, or need NDIS support, then you will need a formal diagnosis. For some people struggling with imposter syndrome, in this case the belief that you don’t truly deserve to use the word Autism for describing yourself, then you may also benefit from a formal diagnosis.

In Australia, a formal Autism Diagnosis is supposed to be performed by a consulting team. At a minimum this should be a Clinical Psychologist who has specialised in Autism Diagnosis, and a Speech Pathologist. Some Psychiatrists, Paediatricians and Neurologists can also diagnose Autism, and like the Clinical Psychologist, they need to have done additional training to do so.

  • It is not uncommon that Autistic children will either begin developing complex speech faster than neurotypical children, or slower than neurotypical children. Other common patterns are a heightened likelihood of speech impediments (eg stuttering), flattened monotonal speech or linguistic quirks such as over or under use of pragmatic speech. This is why it is often necessary for a Speech Pathologist to be a part of an Autism diagnosis.
  • The Autism Diagnostic process was developed with the assumption that all Autistic people will be noted in childhood. This has led to some awkwardness in adhering the diagnostic process when getting an adult assessment, as it is not uncommon for you to be asked to bring in your parent to complete their assessment of you, and to have a speech pathologist examine how you talk, even though you are now past the developmental stages that should be flagging that your speech is delayed or advanced compared to other people in your year group.

Beware of Scams

Unfortunately, the definition of what the specialist training actually entails and is called is poorly defined, so it is very difficult to ensure that your professional can actually diagnose Autism to meet your needs prior to seeing them.

The need for formal diagnosis has launched a mini-industry taking advantage of desperate people. Many organisations and professionals offer to do streamlined Autism Assessments at a significant cost, for you to find out that assessment is not diagnosis. Once they have done their assessment, they then recommend that you go and get a diagnosis from a suitable professional. This is not a pre-screening to ensure that you meet certain minimum criteria before proceeding to the next professional in the organisation (which is legitimate) – instead this is akin to a scam, where the company didn’t make it clear that they cannot actually give a diagnosis. So make sure that you have, in writing, that the professionals you see have the necessary qualifications to diagnose Autism.

NDIS may not initially accept the formal diagnosis you receive if they do not actually recognise the professional as someone who can give a diagnosis, even if that person has indeed done the required training and completed all of the steps in the process. In this case, go to the appeals, and then the ombudsman.

In Western Australia, you can get a referral to Autism Association of Western Australia, who can also facilitate an Autism diagnosis. Often AAWA can get free or cheaper diagnosis for youth, so long as you can wait, or they can connect you to a company that they are confident actually do Autism Diagnosis. For AAWA, complicating co-occurring conditions such as substance misuse, psychosis, violent behaviour problems and so on can lead them to refusing to help.

Diagnosing Minors

If you are a minor, under the age of 18, the most likely diagnostician you will see is an Autism specialist paediatrician. This can be done for free via a GP referral to the state’s Child Development Services, and your child will be placed on the waitlist. As of 2024, you are likely to be waiting for around 2 to 3 years for this free assessment. Your child might be pre-screened prior to seeing the paediatrician, and the paediatrician you see may not have the Autism speciality, which will lead to your child being placed back on the list waiting to see a suitably qualified paediatrician. Hopefully, your child will see a paediatrician that can also assess ADHD as many people have both medical conditions co-occurring. If your child sees a paediatrician with only one of the specialities, the odds are high that your child will be given that diagnosis and you will be told that they don’t have the other one, because that paediatrician hasn’t learned how to diagnose that condition. When holding a hammer, most things look like nails. Child paediatricians are often not well versed in children who display Autistic traits atypical of the classic troubled little boy, or child with frequent meltdowns, so a “no” to an Autism diagnosis does not mean that your child doesn’t have Autism.

If 3 years is too long, or your child is not presenting classically, then you are likely going to need to go and see a private diagnostician. This can bring the price from free to as high as $5,000.

Diagnosing Adults

If you are an adult, you will need a referral to a Clinical Psychologist who can do an Autism diagnosis, or a specialist Psychiatrist or Neurologist. Generally, those who specialise in diagnosing Autism already have the requisite diagnostic team, minimum a Speech Pathologist. While you shouldn’t need an additional referral for other experts, sometimes you will.

There are two major types of Adult Autism Diagnosis: one for self interest and hospital records (cheaper, around $1,000), and one for the NDIS (National Disability Insurance Scheme, around $3,000 – $5,000). The diagnosis for NDIS has additional time consuming reports that need to be written, hence some of the reasonable extra cost – although this still seems too high in my opinion.

What an Assessment Involves

Most typically, an assessment will take 4 sessions. The assessor should be fairly sure you are Autistic in the first session, and if they are confident you are not, they should state this and not charge you for the remainder. This isn’t always true though. As Autism is a congenital neurological difference, the assessor will be looking for evidence that your Autistic Traits are not just recent, but life long. For adults, that means bringing evidence or anecdotes from childhood. For children, evidence that this isn’t just a recent change, but rather a series of indicators over time.

The next 3 appointments are generally assessing what your variant of Autism is, and give you some indicators of severity of common areas of difference, and determine if you are within average in that area, some struggle, significant struggle or impairment versus neurotypical parameters and expectations.

Levels = Bureaucratic Myth, and Deficit Model Diagnosis

Due to NDIS, most of your reports will be give you a Level rating for Autism.

  • Level 1 means “mild Autism”, where you require some support
  • Level 2 means “dysfunctional Autism”, where frequent and substantial help is required
  • Level 3 is “severe Autism”, daily substantial help is required

The level system is a government myth created to make their paperwork and calculations easier. It simplifies Autistic experience into a single number and assumes disability and inability. The Level is directly correlated to the amount of funding NDIS makes available to you, how much financial support your school gets from the government, and other finance based factors. Your Functional Capacity Assessment gives guidance on what those funds can be spent on.

While that can be helpful for bureaucracy, it leads to people having some very faulty ideas about Autism. For a start, there is no Level 0, where you don’t need another person’s help, but you are still very Autistic. In this system, a Level 0 person may have already learned how to accommodate Neurotypical people and adjust for systemic issues, avoiding things that cause meltdowns, systems to solve paperwork problems, order home delivered food to avoid shops and so on.

People often believe that the Level given to an Autistic person is an indication of how “bad” Autism is for them. An Autistic person can struggle in ways that the government doesn’t fund help for, leading to their struggle being dismissed because they didn’t get Level 3.

The Level you are given is more about how much the non-Autistic systems disable you rather than how disabled you are, and thus how much it will cost to address that particular problem.

One of my clients is very good at spotting errors in documents. They use this ability to earn money as a data encoder. The errors on the page seem to leap out at them, and they feel strongly inclined to track down anomalies to get the right information to encode – they make very few mistakes compared to other workers. Trying to track down and explain anomalies rather than just guessing what the author meant means that sometimes their work slows down, but they get the right answer rather than faulty assumptions. This is great for earning some money, but makes it very painful to read menus at restaurants and advertisements on the side of the street, where words are spelled weirdly. This is an example of where an Autistic Trait can potentially earning money (deemed societally useful) or causing problems (personal with adverts, systemic in refusing to guess).

An Autism Diagnosis only talks about the social problems, defining the Autistic person as someone who needs fixing or maintaining.

Autism isn’t just about a deficit diagnosis. It is about how your brain works differently to neurotypical people, leading to other ways of solving problems. Sometimes this benefits society, sometimes this creates friction, sometimes this creates personal hell. By only diagnosing on the parts that cause society friction, the people who are managing often get missed, and the people who get diagnosed feel like they are deficient, which leads society to view Autism as “A Bad Thing”.

Well adjusted Autistic Parents raising their children often confer to them methods of managing Autism and interfacing with mainstream society. This is a good thing, as those kids won’t have to suffer through as much as their parents did. However, this can make it quite hard for their kids to get diagnosed as they do not have the obvious struggles that are being used with the Deficit Model Diagnosis. It can be tricky for kids who have learned to make allowances for non-Autistic people to stop making those allowance, and for those kids who have learned to manage their own moods and bodies to let that go in front of an assessor – often the exact thing that the kids have had to learn not to do. Unfortunately, this can lead to children that would benefit from a diagnosis being either delayed in their diagnosis, or missed.

While a person’s struggles with self, society and situations can quickly lead a mental health expert to recognise Autism, Autism is not struggles with self, society and situations. It is a neurologically divergent brain which often has a difference in many human traits, which can lead to having those struggles with self, society and situations. Having resolved those difficulties does not in any way change the neurology to typical. You don’t grow out of Autism. You don’t learn out of Autism. You don’t therap out of Autism.

Common Co-Occurring Conditions

ADHD

EDS and Hypermobility

LGBTQIA+

Stigma and Exclusion – A tale of being marginalised

Autism is not an Intellectual Disability

Organisational Disenfranchisement

Terms of Entrapment

High Function

Levels

Asperger’s Syndrome

Person Last Syntax

Autism Identity

Finding Your People