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In a previous article, we discussed the late diagnosis of autism, an increasingly common phenomenon that has been attributed to increased awareness, broadening of the diagnostic criteria, and the introduction of the notion of an autism spectrum.1 This diagnostic process involves rewinding back to childhood and closely examining our experiences to find evidence of lifelong autistic characteristics.
During this process of reflecting on childhood experiences, and as they are clearly marked as autistic, one is often led to ask, Why did nobody see this sooner? Why has it taken this long to know and understand? and then to question whether an earlier diagnosis would have spared heartache or pain or a feeling of not belonging.
In reflecting on this process, we have formulated a (non-exhaustive) list of things we wish we could have told our younger autistic selves. While we cannot turn back time, we can share these messages with the autistic youth of today to guide the development of a positive autistic identity and to promote mental health and well-being.
1. There are some things that will never quite make sense to you.
Regardless of the dominant culture, the world abounds with rituals and customs. Many of these practices are quite nonsensical but go unquestioned because they have been part of the prevailing landscape since time immemorial.
Social norms can be very confusing. Why must you hug the aunt that you only see once a year? Why is it polite to open the card before the present? Why are you expected to make a phone call to express gratitude for the birthday card that you never particularly wanted?
For many autistic people, these things remain as confusing in adulthood as they were in childhood. There are times when you may decide to conform for the sake of keeping the peace, pleasing others, or maintaining important relationships, despite it feeling pointless or illogical.
Fortunately, it is possible to find spaces where such nonsensical norms are inconsequential, where you will be able to feel comfortable in opting out of these norms, and where removing the social strings attached to acts of affection is both accepted and reciprocated.
2. Follow your own lead.
It’s important to honor, rather than dismiss, your way of being in the world. You may feel driven to “stim,” that is to move your body in certain ways, or make particular sounds, or seek sensory input to regulate or express your emotions and feelings, both positive and negative.
Similarly, you might find comfort in adjusting your environment to reduce sensory stimuli, for example, modifying light or noise. You may prefer to communicate in text or writing or drawings rather than verbally. You may connect more deeply with people when the focus is on a shared interest or an activity.
Suppressing such needs will only serve to exacerbate your discomfort. Your needs are every bit as important as the needs of others. Sometimes we find subtle, even secretive, ways to meet these needs so as to be discreet while still honoring our authentic autistic selves. But we balance this by embracing the freedom to be our authentically autistic selves when in spaces and places where we have the latitude to do so.
3. Pursue your passions.
Taking time to engage in interests and passions is central to well-being for all people,2 regardless of neurotype. Some people find a way to turn their interests into a career; others engage in their interests for pure pleasure. Both have equal value. No matter what your interests are, no matter whether they are deemed “appropriate” by others or can become a legitimate career, quarantine time to dive deep into those rabbit holes and explore your interests for your own enjoyment.
The autistic mind is particularly good at sustaining focus and soaking up information when interested and, on the flip side, can find it legitimately painful to undertake uninteresting tasks. Take time to pursue areas of interest, delve into different topics, and explore intriguing ideas and concepts. Where some people seek solace and connectedness in the social world, autistic people often find a similar sense of comfort in passionate interests, which can be a significant strength during difficult times.
4. There are people who understand.
At times you may feel isolated, alien, lonely, misunderstood. This is a common experience of autistic people, particularly during the school years when we are grouped with other people who do not necessarily share our interests, perspectives, or values, solely on the basis of similar age. While it might feel like no one will ever understand you, as you grow older, the world will broaden, and you will have the opportunity to meet people who not only understand but also appreciate you, just as you are.
Some people find a sense of belonging and connectedness in the autistic community; other people find their deep and genuine connections elsewhere. But the fact remains that there is a great diversity of people in this world, and within that diversity there are people who will understand you.
5. You are autistic.
Above all else, you are autistic. We are sure you are a great many other things, as well. Perhaps you are kind, honest, tall, short, introverted, extroverted—and underlying all of these traits is a foundation of autism. Autism is not changeable, temporary, or curable; you have always been autistic, and you always will be.
Autism is interwoven throughout your every experience and underpins your ways of seeing, being, doing. And that is a beautiful thing. You see the world through an inherently autistic lens, which means you will see details that others miss, you will make connections that others can’t fathom, you will experience intensity in ways that only an autistic mind can.
Autism is one of the things that makes you uniquely you. You are not broken, or damaged, or wrong; you are superbly, supremely, splendidly autistic.
And now, a message to your parents
Be proud of your autistic child and love them to bits, just as they are. Trying to separate them from their autism is not helpful, nor is speaking negatively about autism. When you speak negatively about autism, you are speaking negatively about your child.
It might seem like there is a difference, but your child doesn’t experience autism as separate from themselves; rather, they hear negative words spoken about them. This can make them feel wrong, defective, broken, less.
Be open, factual, and positive about autism. Children pick up on our feelings and attitudes, and that informs how they see themselves and the world. If we tiptoe around autism, keep it hidden, or feel uncomfortable talking about it, that sends a message to our children that it is something to hide and feel ashamed, fearful, or frustrated about.
Autism is not something to be feared. Yes, there are challenges that come with being autistic in a predominantly neurotypical world. Yes, there are co-occurring conditions and inflexible systems that can pose significant challenges for your child and family unit. But your unconditional love and genuine acceptance of your child will create a psychological and emotional shield to help them navigate the world.
Your child, like all children, can thrive only with a strong sense of self-concept, and for autistic children that includes a positive sense of their autistic identity. Even in adulthood, they will always be your child, and they will always be autistic.
References
Lai, M.-C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027. doi:https://doi.org/10.1016/S2215-0366(15)00277-1
Seligman, M. (2011). Flourish. London: John Murray Press.
