Warning: Contain discussion in and around suicide and self harm.
TL, DR:
* My condolences for Michelle
* The West Australian really F’d up the title
* Autism is a neurological difference, not a disability
* These differences can be directly disabling, or society led disabling.
* The risk fo suicide in Autistic people is very high, mostly due to society
* The is also the risk of self harm
* Co-occurring diagnoses are very common with Autistic people, and untreated can make things much harder than they need to be
Autism is a group of congenital highly hereditary neurological conditions. That is, if your kids are autistic, you probably are too – more on this a bit later. Autistic people have differences to the neurotypical cohort of people that can be advantageous and dis-advantagous. If those disadvantage differences are not adjusted for, by the person and by society, then they are disabling.
Autism itself is not a disability, despite what the zeitgeist opinion is, or what you’ve read in mainstream or even medical texts. It is medically defined as a disorder, which just means “different to the mainstream”, and as a requirement for a medical consideration, contains elements of disadvantage or difficulty to the person.
Difficulty seeing is a disorder. On average, humans can read the standard sized characters at 6 metres, the N6 text at 0.3 metres, and read all the symbols in the Ishihara colour test. If you cannot, your vision is disordered. Frequently we give people disability aids called “glasses”. As a requirement to drive a vehicle, your distant vision must be within certain parameters of 6/6. We allow people to wear glasses when they demonstrate this ability, and we note down on their drivers licence that they must wear their glasses to drive. We do not medically label when people can read at greater than 6/6 unless it causes a difficulty.
Allowing people to wear glasses to pass the driving test is allowing a disability accommodation. We only include, medically, the people who diverge from the average ability to read those who are “worse” at it, because that is an “impairment”.
Autism is not the same.
For a start, your divergence from the average can be in many different areas. This divergence may be hyper (above average), hypo (below average) or just different. It may trigger a secondary feeling of pleasure (phiic) or anger/dissatisfaction/disgust (phobic). The divergence may be specific or plenary (lots in that category).
The criteria for how we measure Autism has changed over time, but it mostly boils down to primarily difficulty in making friends due to either social-emotional, nonverbal communication, or relationship ability is deficit of the neurotypical, and secondarily at least two of the following “traits”: movement differences, preference for sameness, fixated interests, hyper or hypo sensory perception.
If the person is considered to be atypical enough to warrant the Autism diagnosis, they are given a Level 1, 2 or 3 classification:
Level 1 – difficulties in communication only
Level 2 – difficulties in communication, repetitive behaviours and or inflexible
Level 3 – severe challenges in social communication, extremely inflexible behaviour and likely meltdowns or other odd behaviours
This ignores a great deal of the experience and nuance of Autism. This is like categorising Australian’s as White Females. It is technically true that females are more numerous than males, and it is technically true that the most common skin tone in Australia is the approximation called “white”. So while technically true, this both tells you little about the various peoples of Australia, nor who the individual is. It also disrupts what people expect to see when they think of Australians, making it hard for anyone who doesn’t fit the simplified stamp of white female to be included as Australia, or any specific personal differences from that model to be considered as part of your Australian Thing.
The trap of the above diagnostic and categorisation method is that it doesn’t account for people who have mediated their neurological differences (such as devices for managing disadvantageous sensory differences), or learned around their neurological differences (specific upskilling, fantastic parenting), or inclusive environments (an Autistic person commented to me that they weren’t Autistic when they were bush walking – they were just bush walking) and so on.
That is, most people who wear glasses don’t think of themselves as disabled, because they get to wear glasses.
Wow, that was a lot of pre-amble.
So that brings us to the graphic.
The “West Australian” is a big local newspaper here in Western Australia. Today they had a title on their digital paper that reads in the big font “Two sons both lost to autism” and in a much smaller font title “mother’s plea for help amid new suicide crisis”. In this exclusive, by Bethany Hiatt, she outlines how Michelle’s two sons, Xavier and Jye, have taken their own lives.
Michelle wants to “raise awareness that people with autism are so high risk for suicide – which I didn’t know”.
This is very sad. It is awful that Michelle’s sons took their own lives (different times, both this year). What circumstances could have led to this? Clearly, according to the title, it was “autism”. It is fair to jump to this conclusion. It is well known and studied that Autistic People have a much higher rate of taking their own lives than average. The nuance, though, is defining average. Here, average means people who are neurotypical, wealthy, and in positive supportive environments.
Autism is often co-occurring with other diagnoses, such as anxiety, depression, ADHD, social phobia, bipolar affective disorder and so on. This is generally due to autistic people not being properly assessed for their mental health, as mental health is diagnosed by variance from the neurotypical, which Autistic People aren’t. Autistic People are often misdiagnosed, which leads to the wrong treatment plan. Anxiety, depression, etc all have higher than average rates of people taking their own lives, harming themselves, and being in abusive social relationships. So… is that higher rate of death etc due to Autism, or other conditions?
Autism is also often co-occurring with various physical diagnoses. It is very common for medical professionals to dismiss reports from Autistic People of illness. This is partly due to Autistic People expressing differently. How do you describe being in pain? Neurotypicals use a certain tone of voice and facial expression, both of which are rarely used by Autistic People. So instead many Autistic People have used the medical definitions for pain which instead elicits the suspicions of the medical professional that this is “put on” rather than “literally true”. I have had many conversations with Autistic people who have told me about walking home from the hospital or doctors clinic on a broken bone, because they weren’t believed. If describing pain is hard, imagine all of the other symptoms we report to doctors that aren’t believed. Additionally, many autistic people don’t have the same response to medications that neurotypicals have. People who have medical conditions have a higher rate of taking their own lives, especially when they do not feel heard by the system.
Autism is also often co-occurring with disadvantaged socioeconomic circumstances. It can be hard to keep a job when you tell the company the truth they don’t want to hear, or you literally do the task they have had to “ask” you to do, but don’t want you to do, because they are cheating the system. It can be very hard to get work when they won’t accommodate your hearing or visual differences.
Worst of all is the stigma of Autism.
That is the biggest offensive thing about this article. I appreciate the author of the article doesn’t choose the headlines, so I don’t hold them accountable for this. The headline itself is misleading, disabling and stigmatising.
Stigma exists beyond the title though.
Intellectual Disability is 5 times more likely to be diagnosed in Autistic People than it is in Neurotypical people. Sometimes this is an accuracy diagnosis. Often it is not, it is just that the assessor didn’t understand the learning differences and problem solving differences that the Autistic Person being assessed had. Even if all of the co-occurring diagnoses of intellectual disability are accurate, that is still a minor percentage of the Autistic Population.
And yet, the common zeitgeist is that Autistic People are stupid and disabled. Which is generally false.
Sometimes it is very helpful to get some support in buying those glasses so that you can see well enough to drive to work, so that you can afford the glasses… getting help is good, especially when the disadvantage you have is one ability aid away from allowing you to fit into the mainstream.
To get help for Autism is hard. First of all, it takes several years for a child to be assessed, and often thousands of dollars. Once you have your assessment confirmed, you don’t actually get any help. You have to apply for that. The most common aid given to Autistic People is NDIS.
NDIS requires that you have a permanent disability. Okay, if we are going to call Autism a disability, since it is a congenital neurological difference, it is permanent – you don’t grow out of Autism, you just get better at being you. NDIS, though, requires that your disability continues being a disability. They will fund services and devices that allow your disabled life to be of higher quality, but it doesn’t fund for you to “get better”. The trap of NDIS is that to get their funding help, you have to settle into being disabled – whether you are or not.
It is F’ing hard to get NDIS. It is F’ing hard to get good services with NDIS funding. It is F’ing hard to maintain your funding to maintain your quality of life. You keep having to prove your lifelong diagnosis and needs.
Other Autism support isn’t much better.
Where does that leave us?
Yes, the suicide rate for Autistic People is much higher than we would like. Mostly it is because the system is awful and people die before they get help, because getting the right help is so F’ing hard, and even when you do get it, it is often the wrong F’ing help, because you got misdiagnosed.
For a start, most Autistic People who are struggling with anxiety and depression likely are not diagnosed with ADHD. ADHD medication helps most Autistic People manage their co-occurring ADHD (most Autistic People are also ADHDers), which dramatically reduces anxiety, depression, self harm and suicide.
Second, finding your people dramatically helps reduce suicidality. Autism and ADHD are spectrum conditions; that is, you can meet people who are on the “other end” of the spectrum (the spectrum isn’t linear, it is polydimensional) and you won’t get along with these people. When you meet people in your section of the spectrums, it feels really good. When you feel part of a community, your risk of suicide dramatically decreases. (Side note: people who do find each other often fall in love and have kids, which is why the odds of only having one autistic parent is very low, told you I’d get back to this point).
Third, learn to defend yourself from social and system abuse. Autistic People are suckers for toxic people and toxic systems. That means learning to recognise the difference between what someone says and what they do, learning to manage that difference, and learning to walk away from toxic situations. This also applies to systems, where much like people, sometimes we are actually stuck with the toxic thing and have to learn how to manage it.
Lastly, push for systemic change. We need a health system that isn’t so black and white, making moderately disabled people more disabled and ignoring everyone else. We need a health system that helps us get healthy. We need workplaces that not only want Autistic People for their Hyper-focus, Hyper-creativity and so on, but also accommodate the environment so that Autistic People can take breaks from sensory overload, can relax after a hyper-active event (such as hyper-focus) and have clear communication when they ask for it without being belittled.
If we do this, the suicide rate will go down.