Autism is not Overdiagnosed

I’ve heard quite a lot of people state that they think that Autism is overdiagnosed, and a few stating we are in an Autism Pandemic.

No. This is not true.

Part of the problem lies in comprehending what a diagnosis actually means, because most people don’t understand what Autism actually is. The stigma is that Autism is a disability, an illness, a problem. While it is true that Autism can disable, is often comorbid (existing as well as) illnesses and can creates problems; Autism does not always disable, is not an illness, and doesn’t require problems to happen.

Being Autistic is not a bad thing.

People who assume that Autism is a medical label for a type of disability, illness or problem find it hard to understand why knowing you are Autistic if you don’t experience any of these is important. These people will argue against labelling people because labels are stigmatising, while ironically making the label stigmatising.

Knowing that you are Autistic is empowering. When you know that you are Autistic, it helps you understand traits that you live with, the traits that affect you, and that these traits are normal and okay; just different to people who are not Autistic. It helps you know that you can drop the mask when safe to do so, and it is relieving to doso. It enables you to comprehend why neurotypical people struggle to do some things, and why they do so many odd and illogical things. It helps you compensate for some of your own specific weak areas that you previously thought were failure or some kind of darkness.

You don’t need to have a “medically significant problem” to know your heritage and be empowered by that knowledge.

Chris from “Autistic Not Weird” surveyed many people to accumulate some very interesting statistics. Those who are diagnosed with Autism and the professionals who help diagnose both agree that Autism is not over diagnosed.

Survey indicating that most autistic and professionals agree that Autism is not over diagnosed
Source: Autistic Not Weird, https://autisticnotweird.com/autismsurvey/

In my professional work as a therapist, I think that Autism is woefully underdiagnosed, and that under-diagnoses is blinding people to important information about themselves. That lack of information can be very harmful and lead to complications that just are not necessary.

Don’t let the stigma others carry block you from either getting your own diagnosis, self-diagnosing, or facilitating the diagnosis of a loved one.

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Original text

[From the Facebook Group “Autistic Not Weird”]

Yes, there may be a striking difference in the level of disagreement, but the results are fairly unambiguous: both autistic respondents AND non-autistic professionals generally believe that autism is NOT over-diagnosed.

And honestly, it’s an idea that’s very damaging to autistic people (especially those who find diagnostic services inaccessible), so it’s encouraging to see the professional recognition of what most of us already acknowledge. -Chris

[Link to Full results and analysis]

Eye Contact is Overrated

When we look at an object, light reflects off that surface, strikes our eyes, goes through our lens, triggers photo-receptors on our retinas, triggers an ion cascade through nerve fibres to our brain, branches through our limbic early warning system and up through to our occipital region to paint an hallucination of the object within our mind that doesn’t exist.

To understand what this image is, elements of it go to various parts of our brain, a network to identify the base category [table]. Once identified, another network of brain parts starts to inform you of basic properties [sturdy but not strong, need a coaster, not a weapon]. For anything that is within your catalogue of known items and fits closely enough to things you’ve seen before, this process is so quick and automatic that you don’t even consciously think about what it is that you see, you just know.

When we look at someone’s face, we are supposed to pick up the cues of pupil location, changes in eye shape, colouring of the cheeks, muscle configuration, amount of teeth shown, wrinkling of the brow, wrinkling of the nose, flare of the nose, twitching of certain muscles, activity of the ears, orientation of the head, stiffness of the neck and so much more – to try to figure out both if we know this person, and also what is their internal state.

Many studies have shown that the amount of brain activity needed to determine if you recognise a face and identify a person – and the amount of brain activity to determine what the internal state of that human is – is very high.

For most people, determining faces and that person’s internal state is considered a priority task. Humans are tricksy beasts, often hiding what they are truly feeling, masking their moods and deceiving others. Often this deception is for their own protection, but enough of the time, it is to take advantage of or harm another. In this era where most of the wildlife has been tamed or killed, the predators that are actually dangerous to us are humans.

Additionally, to work together as a team, it is important to know what your team is doing without having to explicitly be told, and it is helpful for them to know your state without you having to tell them. This non-verbal communication not only avoids cluing in the prey animal we are hunting, it allows for communication in a noisy environment, at a range, or in a hostile situation.

So it makes sense that humans evolved an internal brain network that is not only good at detecting faces to recognise them as friend or foe, but also to register the internal state and intent of those we see, so that we can either brace for attack, or work more effectively as a team on collaborative tasks. For most, it only takes a few key signals to quickly and efficiently determine someone’s mood and intent. Each person viewing another’s face will use a different combination of cues, but it is enough to get there. Consider how much of a table you need to see to guess accurately at the rest.

It is a great pity that many autistic people have not got this automatic process (some do). Often it is “yes that is a face, that seems happy?” much like you would for a table. The process doesn’t have that extra nuance of “happy with the food, upset at something else – from the stiffness of their partner, I’d say they have a disagreement”.

Determining a person’s internal state and intent can be learned as a manual skill. Like all acquired skills, it is slow and cumbersome at first, and in time can be improved to the point of being an automatic process. In this regard, it is similar to learning any manual skill, such as tennis, judo or driving. We were not born knowing these manual skills, but we can acquire them after birth from manual learning, and get so good at them that we can be very proficient. Some people, though, are only ever mediocre.

It is important to recognise that even those who hone the skills to an expert level are doing a non-natural task, which makes it more taxing to the brain system than automatic tasks like breathing, or beating your heart. Consider when you’ve pulled over your car, turned the radio down so that you can look at the map, or missed a turn because the conversation was too distracting. How often have you forgotten to beat your heart?

Manually learned tasks are inherently inefficient. Determining internal states and recognising faces is already a highly taxing mental task in those who have the evolved automatic process; for those who manually had to learn it, it is even more taxing.

For many autistic people, eye contact is hard. It takes a lot of processing to “read a person”. Due to a history of errors, there are a lot of features the autistic person will use to try to gauge and error-correct an impression. Even so, doubt will exist as the differences between earnest and honest expressive people, nuances and deceptive people is subtle. A deceptive person who is bad at it won’t get very far.

If the autistic person has got good at this task and isn’t too stressed or fatigued, they can fake eye contact fairly well. Even so, there are likely to be lots of calculations in the background of “am I making too much eye contact?”, “am I making too little eye contact?”, “what does that twitch mean?” and “I think I’ve missed something”. As stress and or fatigue rise, eye contact becomes harder. If the person hasn’t got good and efficient at this manual task, it was already hard to begin with.

This hasn’t even yet included adding ensuring that your own face is conveying “I’m not a threat” and enough of your own mood to help them help you, or not help them harm you.

Many western cultures run under the practice of “eye contact is honest”. Too little eye contact implies “deception / disrespect / uncertainty / subservience / inattentive etc”. Too much eye contact can be read as “invasive / challenge / threat”. It can be a systemic enculturated discrimination of autistic people.

Many autistic people describe the feeling of forcing themselves to make eye contact as “uncomfortable / a pressure behind my eyes / disorienting / dumbifying”. Each of these describes the increased cognitive load trying to process a face and how that can reduce the resources to do other things, like hear what the person is saying, think of a response, still stims and other movements etc.

When an autistic person stops looking at your face, but continues to talk to you, especially engaging in your conversation or talking about a subject they are passionate about, they are conveying to you respect, affection and enjoyment. They have likely stopped eye/face visual contact to give you more attention, because they want to understand you and what you are saying and meaning. You can help them by adding in verbal descriptions about how you feel about what they have said, and being more explicit in verbally stating your intent and checking that you have both understood the other.

Eye contact is overrated.

Sensory Sensitivity

The standards to which we create things are based on the average wants and comfort levels of people. The biggest group is called “typical”, and since perception is about how your brain perceives things, we refer to their neurology as neurologically typical; shortened to neurotypical. Importantly, all people have a limit to what sensory they can process before their functional capacity declines.

Average is nice, but tends to exclude a good number of people.

For example, the loudest that electrical equipment can be is based on the average loudest dB that doesn’t cause pain or damage – which means that it does cause pain and damage for some. Additionally, domestic (home) equipment doesn’t sell well when it is too loud or sounds too obnoxious to people – you’d rather buy the brand that sounds less bad.

At some point in manufacturing, industries get lazy. For example, most vacuum cleaners sound about the same – that is, they are about the same loudness, and about the same pitch. It is the natural meeting point of “legal”, “sells well” and “cheap”. If you want to purchase a vacuum cleaner, and you aren’t very rich, you will settle on the least objectionable item – and they are all basically the same.

It is not uncommon for an autistic person to be more sensitive to some types of loud sounds and some types of pitches than neurotypical people. This sensitivity can be felt as physical pain, or mood pain such as anger, sadness or anxiety. Do you hear the electronic devices screaming in a super high pitch? Perhaps you hear the deep hum of the refrigerator and it irritates you. 

Too much sensory input

Not all autistic people will struggle with loud sounds, or with certain pitches. 

I’ve picked on audio as a place to start from. All of our senses have these issues, whether you are neurotypical or neurodivergent. There is a limit to how much or how little a phenomenon can be for any person to perceive. If you detect beyond the average range (eg very high sound, or very low sound) then you are hypersensitive; if you detect below the average range (eg can’t taste that food where others can) you are hyposensitive. You may note the phenomena, love the phenomena (philic response), or hate/fear the phenomena (phobic response).

I want to emphasise that being hyper or hypo sensitive isn’t necessarily a good or bad thing. Each are useful and hindering in the right context. I was supporting an autistic person to purchase a phone. They wanted to feel the texture of the phone before purchasing it, to minimise a sensory rejection of the item. When the sales assistant returned the phone to its cradle, they accidentally set off the burglar alarm. This was very, very loud and warbled at a particular pitch that was quite unpleasant. The store was emptied within seconds. The sales assistant was shaking as they tried very hard to focus enough to return the phone to the cradle properly and deactivate the alarm – the alarm was making it very hard for them to think. The autistic person I was supporting just stood there and waited, seemingly unperturbed by the sound. I checked to see if they were ok, and they responded that while the noise wasn’t fun, they were perfectly fine. We then held a conversation for a few minutes while waiting for the sales assistant to finally deactivate the noise, which confirmed that my person was not flustered or discombobulated. While the hyposensitivity to this particular noise wasn’t useful in this instance (beyond not having to run out of the store like all of the others), I can imagine a setting where it would be. This could have also gone the other way, where if my person was hypersensitive to that sound combination, I may have had a sobbing or aggressive person on my hands.

There is an excellent argument that if we, as a society, made some additional considerations of sensory sensitivities, then everyone would benefit. Imagine, being able to purchase a cheap and effective vacuum cleaner that was half as loud and less obnoxiously pitched. Imagine each room in the office building having their own climate control, so that the person in the room can pick the temperature that works best for them.

In my opinion, everyone would gain from society requiring more consideration to sensory limits, not just autistic people.

Rejection Sensitivity

Rejection Sensitivity is a strong reaction to perceived or actual rejection. It can often be triggered by fearing having done something tenuous wrong that another person will then act upon, or by the perception of negative feedback.

It often starts as a result to poor masking. Masking is a mechanism that neurodivergent people, such as autistic and adhders, use to seem like others, to fit in with the crowd and be accepted. The problem with this method is that neurodivergent person is not actually accepted, only their mask is.

When this fails and the person is rejected anyway, it triggers a spiral of “was it me”, “was it my mask”, “did they see the real me?” and “what do they want from me?”. Being seen behind the mask, not knowing how to fix the mask, and not understanding why you’ve been rejected is terrifying.

Image of male indicating rejection with the "thumbs down" hand sign
Being Rejcted

When it works, neurodivergent people can mistake themselves for the mask, or always feel empty, dishonest and false. Neurodivergent people can feel that they are what they produce and lose themselves in their identities such as work, rescuer and provider. These are all roles, and are not you.

When entering a group, the neurodivergent person wants to know what role they fulfil to “fit in”. What do you, the group, need? How will I be able to add value, so that you will value me? To decrease the risk of immediate rejection from the group, the neurodivergent person may bring gifts, services and work extra hard. It is not uncommon for the neurodivergent person to put so much work in, that they are doing the work of 2 or more people. Just don’t reject me!

Abusive people love to take advantage of this sensitivity and extra goods from the neurodivergent person.

Rejection Sensitivity is a thing. RSD aka Rejection Sensitivity Dysphoria, is not.

Rejection sensitivity comes with some cousins.
– Rejection sensitivity
– Imposter Syndrome
– Fear of Betrayal
– Fear of Abandonment
– FOMO (Fear of Missing Out)
– Fear of Failure
– Fear of Being Alone
– Conflict avoidance

To manage each of these, people form “People Pleasing” behaviours, avoid ever pointing out someone else’s mistakes and take on far, far, far too much responsibility. Until the neurodivergent person collapses in exhaustion and experiences burnout.

The central error in this is mistaking your worth as your product – gifts, services and sacrifice.

Your worth is in you as a person, not what you do for others. You are a Human Being, not a Human Doing.

This reorientation of worth allows the Human to make mistakes without being a mistake, and from those mistakes, learn, grow and change.

This allows you to produce a reasonable amount, instead of a superhuman amount. After all, the person in the team who does the least is still getting paid just as much as you are.

This makes it easier to spot those who are abusing your generosity and cutting them off. This allows you to walk away from that toxic situation.

When a neurodivergent person begins to arc up with extra sensitivity from any of the above trigger situations, they can query themselves – am I experiencing Rejection Sensitivity? Then take a pause and separate the feeling of personal failure from the situation. You haven’t changed – the situation has.

Sometimes the neurodivergent person has made a mistake, and if so, it will be clear and obvious. We don’t lose friendships over subtle problems, and a person who claims we made a subtle or illogical and non-evidenced error is someone to be aware of – they are likely toxic and may also be abusive (take the opportunity to get out of that relationship). Once we have identified the error, what can we learn from it? Can we adapt and adjust our actions, plans etc to factor in this new information? How can we grow?

We have turned a mistake into a growth opportunity.

Learning how to identify toxic people is very important. The odds are that if you have a high rejection sensitivity response and it is frequently triggered, then you are likely “surrounded by arseholes (TM)” [a ‘diagnosis’ I sometimes give my anxious people in hostile social situations].

I find the red, amber, green flag system useful for doing evaluations of the person/people who trigger the Rejection Sensitivity.

Red flags are “red alert” style behaviours (double standards, moving goal posts, claims of error without evidence, faulting you for not reading their mind).

Amber flags are “wake up and take a close look” behaviours, where something seems off, but it isn’t clearly a red flag, but it might be. This is the time to take the rose tinted filters off our eyes and take a cold hard look. Is this odd behaviour an anomaly, or is it actually a trend? Everyone has the right to a bad day.

Green flags are indications that our relationship (work, intimate, friend) is on the green – aka good. Things like “does what they say”, “informs you of the important bits in a timely fashion”, “asks for reasonable things”, “believes you”, “has a single standard”, “understanding”.

Once you’ve started to learn about how to spot the toxic people, and that their behaviour isn’t your fault or responsibility, you can start to yeet the toxic people.

Then, with a bit of retraining, your Rejection Sensitivity can calm down.

There is a strong caveat here. Even after internalising the above, you can still struggle with rejection sensitivity. Two main causes for that is past trauma – get some trauma counselling; and an adrenaline/mood problem – investigate medication.

If you want, I can go into those two in more detail. For now though, see a professional.