Anyone working with autistic people needs to read this paper – upshot is, autism means different, not broken. This is what we have been saying for years!

Here is the link to this article I wrote with Dr Judy Moore which is about some arts-based focusing workshops we ran at UEA

As we all know, autism is a spectrum disorder meaning that there is a wide range of abilities and difficulties that sit under that umbrella. Recently there has been a suggestion that a new category of autism called “profound autism” is needed to differentiate between so-called “high functioning” autistics and individuals with greater support needs.

This suggestion is bound up with a view that when people “with high functioning autism” say they are autistic, it seems like they⏤we⏤are indicating that autism is just having a “quirky personality” or having a propensity to be a bit “flaky” on Tik-tok.

The knock-on implication of this is that we are taking up space and resources we just don’t need. However, this is a myth, and somewhat upsetting: rates of poor mental health and even suicide are much greater for the autistic population as a whole than they are for neurotypicals even if we might not show the signs.

But I feel the need to prefix this blog with a disclaimer that yes I know that autism varies widely in how it is experienced and there are vast differences between the levels of support people need to navigate day-to-day life and that this has an effect on families. This piece is not meant to diminish that.

My point is not to compare experiences but rather to highlight that being on the “other end” of the spectrum (and yes I know the spectrum is not linear) is no picnic.

Here are five things everyone should know about “high-functioning” autism:

1. Autistic people who are labelled “high-functioning” commonly suffer from a range of mental health problems (such as anxiety, depression, OCD) to a level which meets the threshold for a clinical diagnosis. These problems tend to be chronic, and for many anxiety is our day-to-day experience. My personal view is that this is linked to masking⏤because we can pass as neurotypical we feel a pressure to, and we minimise our distress, and over the long-term, this can lead to burnout and breakdown.
2. This is linked to the above, but is so striking I think it warrants a point of its own. There is research which suggests up to 66% of autistic adults have considered suicide, and up to 35% had planned or attempted suicide (Hedley, D., & Uljarević, M. 2018), with the highest risk seen in autistic women, and autistic people without a co-occurring intellectual disability. That is, people who would not be considered “profoundly autistic” under the proposed new category.
3. Autism has a very ‘spiky’ profile which means that while someone may be “high functioning” in one area (e.g. doing their main job role) they can also really struggle with seemingly “simple tasks” such as booking leave or finding the cafeteria. Because the things we can’t do often seem “easy” compared to the ones we can, we may not get any help or support. We also may feel embarrassed to ask for support.
4. Meltdowns and shutdowns can, and do, happen to any autistic regardless of their general support needs. This can include times when we are unable to speak our words. We need to know it’s OK to take time out at any time so we can manage, and not feel forced to stagger on.
5. Because autism is an invisible disability we often gaslight ourselves and persuade ourselves that we can tolerate more than we able to stay well. This is why the suggestion that only profound autism counts has hit many of us so hard and feels so deeply invalidating.

Although support needs differ, we are all autistic

Autistic masking, also known as camouflaging or compensation, refers to the act of consciously or unconsciously hiding or suppressing autistic traits, behaviours, and emotions in social situations. Autistic people develop masking as a coping mechanism to fit in and appear ‘normal’ or socially acceptable to others, but it can come at a significant cost to our mental health and well-being. This is because masking involves a deliberate disregarding or suppressing of our needs.

Autistic masking can involve mimicking neurotypical behaviours, such as making eye contact, imitating facial expressions, or engaging in small talk, even if it feels uncomfortable or exhausting. Masking can also involve suppressing healthy stimming behaviours, such as flapping hands or rocking back and forth, or hiding special interests to avoid being seen as ‘weird’ or ‘obsessive.

Masking can lead to burnout, exhaustion, and increased anxiety and depression. Autistic people who successfully mask their traits may also struggle to access support and accommodations, as our difficulties may be overlooked or dismissed by others who perceive us as ‘high functioning’ or otherwise OK.

It’s important to recognise that masking is not a choice but a response to social pressure and the stigma surrounding autism. Masking can be exhausting and lead to increased stress, anxiety, and depression. Unmasking and being true to oneself can help reduce this stress and improve mental well-being. It also promotes self-acceptance and increases the likelihood that we will be able to access any support that is available.

But you probably know all that⏤and you probably know that unmasking is neither simple nor easy.

Masking is such a deeply habituated behaviour that autistic people slip into it unthinkingly: growing up in a world which centres neurotypicality, we learn to mask for safety, and we learn this early on⏤and after years of masking it can be difficult to even imagine what a real you is. So, if unmasking involves being true to oneself and embracing our autistic traits, the first hurdle (and this is particularly true of late-identified autistics) is to learn to listen to ourselves, to observe.

Added to this, we often fear being seen as ‘difficult’ when we start to think about unmasking. Part of learning to mask is internalising a model of neurotypical behaviours and standards, which we then judge ourselves by; we may tell ourselves we are ‘making a fuss’ (no-one else thinks it’s too loud, too hot, whatever) and so we suppress that feeling⏤we may see ourselves as demanding or fussy, and this bites because we have likely been told this many times growing up.

Deciding to unmask can be scary. Typically, masking evolves as a defensive strategy (to protect us from the judgements of other people) and dismantling defences is never a comfortable thing to do. We might wonder if our relationships will survive, or if we will become ‘horrible’ demanding people⏤or be perceived to be so⏤if we suddenly start asking for what we want and need.

But on the other hand, unmasking brings benefits: being masked prevents autistic people from forming authentic social connections and can leave us feeling isolated, misunderstood; unmasking offers us the opportunity to form deeper connections with others who see and accept and appreciate us for who we are. Nevertheless, it feels, and is, inherently risky if the mask is all others have known of us up to this point.

If we’re going to unmask, the most obvious place to start is with close family and friends. In an ideal world, these people will be more likely to accept and support us, and validate our nascent ‘real self’ before we take it out into the wider world. However, this can also be the hardest place to start because these are the relationships which we may fear losing the most. What if our unmasked self is unacceptable? Will we be rejected? It can be scary stuff. Baby steps are best.

It’s important to recognise that unmasking is a personal journey⏤as is the decision to stay masked in certain situations and with certain people⏤and there is no right or wrong way to approach it. The process can be gradual, and it’s okay to take small steps towards unmasking. Here are some strategies that might help:

Start with small steps: Begin by being more open about your interests and preferences, as the opportunity arises.

Find a support system: Surround yourself with people who accept and appreciate you for who you are. This can include support groups, online communities, or therapists who specialise in working with autistic people.

Practice self-care: Unmasking can be a stressful process, and it’s important to prioritise self-care to support your mental health and well-being.

Be patient with yourself: Remember that unmasking is a process, and it takes time to fully embrace and accept your authentic self.

Finally, remember that even if you have been heavily masking your whole life, your unmasked self is still in there and it’s still you, and is unlikely to be radically different: you may be a little more assertive about what you need and possibly socialise a little less (or socialise differently) but you are unlikely to become a dislikable person no one wants to be around⏤which is often what we fear. This is old, deeply-entrenched, learning from our childhood and is likely to have outlived its usefulness; as adults we generally have more agency around finding safe spaces and better allies.

When we unmask we are less likely to meltdown and more likely to stay regulated. We may lose a couple of friends along the way who don’t want to accept the changes we’re making, but that will free up space for other, more authentic, relationships which will ultimately be more satisfying in the long run.

Having said that, unmasking can cause turbulence in our lives⏤for a time at least⏤but to me it seems something worth doing.

Good luck!