Children & Youth

Autism – The Impact of Community on Identity

Personal identity is mostly shaped by our own communities. Unfortunately, in the world of autism, personal identity is often negatively impacted by the perspective of the individual’s community, especially when there isn’t an understanding of neurodiversity.

Some of the most influential people in an autistic person’s life (parents, teachers, peers, professionals, and the media) can create identity issues through a tragic portrayal of this diversity. They often force social habits without considering the person’s neurodiverse needs, which can lead to behaviours that challenge, shame, and guilt regarding their identity – this usually results in masking or isolation from the community.

In the world of autism, personal identity is often negatively impacted by the perspective of the individual’s community.

Autistic Self-Advocates

Autistic self-advocates are using their collective voice to establish respect for autonomy, justice, equity, nonmaleficence, and health maximization. The community that has caused their identity crisis continues to oppress and not recognize their perspective which comes from their autistic lived experience. My hope is to illuminate this perspective and facilitate a compassionate and accepting lens of a diagnosis that stems from a neurological difference, not a choice.

How do autistic people see themselves?

Some autistics are attracted to the metaphor of the alien to describe themselves, or to say that they find neurotypicals alien. However, autistics always have the feeling of being different than the general population.

Media portrayals such as an autism campaign where a parent intones “imagine that aliens were stealing one in every two hundred children . . . that is what is happening in America today. It is called autism.” Another story compares an autistic child to “the changeling, the troll child substituted in the middle of the night for an infant sleeping.” And there are numerous books written by parents with sentiments like, “I started this journey with my beautiful baby boy and am returning with a slightly alien, uneducable time bomb.”

Unfortunately, these examples are the norm. Dozens of my students have been called “monsters” and “aliens” by their peers. The parents are taught by professionals to mitigate every non-neurotypical behaviour including jumping and flapping when excited. Some parents withhold their child’s diagnosis from them, yet still notice their differences and feel that there must be something very wrong. Students have come to me distraught after seeing commercials where autism is portrayed as a child who is aggressing their parent.

Autistic people rarely feel accepted to be the neurodivergent they were born to be.

Accumulatively, over the course of a lifetime, an autistic person’s identity is negatively influenced. The very community that is supposed to protect and be supportive is instead trying to “fix” and change autistics. Perhaps they haven’t had a chance to reflect on the impact that the popular perspective may have on the child’s self-identity.

The very community that is supposed to protect and be supportive is instead trying to “fix” and change autistics.

Initially, we are defined by our parents, then peers and teachers, and last by the larger community. It is no wonder that autistics have an identity crisis, can suffer additional mental health conditions after puberty, and experience inequity when seeking employment. They often have difficulty securing safe and appropriate housing, and may even end up living on the street after their parents pass away. 

Is autism a difference or a disability?

Until recently, autism had been shaped mainly by the medical community (professionals) who see it as a disability and a deficit that needs to be “fixed.” Those with diverse neurology are expected to fit into a sociocultural environment that wasn’t created for them. From the standpoint of autistic self-advocates, they are worthy individuals as they are and don’t need to be cured, altered, or isolated from the world. When the people who are supposed to love and support autistics see them as broken and don’t believe in their abilities, how can they believe in themselves? How can they develop a healthy self-identity?

Both autistics and neurotypicals can agree upon their differences, but there’s a strong divide regarding what to do about it. Both parties agree that the differences include sensory processing, self-regulatory behaviours, special interests, and unique social interaction and communication styles. Advocates are saying that instead of a cure, they need help identifying coping strategies for symptoms that others consider behavioural problems. Additionally, parents and professionals should help autistic children define their positive traits, skills, and special interests.

Instead, the most prominent interventions tend to want to force autistic people into a neurotypical mold. But this can lead to masking, which often results in identity and mental health complications. Autistics are needing to pretend to be someone they are not just to fit in and be accepted. At some point in their life, autistics cannot mask any further and suffer an identity crisis which surfaces as depression and various mental health complications.

Parents and professionals should help autistic children define their positive traits, skills, and special interests.

Autistic people need to connect with each other.

With the emergence of the disability rights and self-advocacy movements, there has been strong growth and development in the autistic community. This is in part due to connections made on the internet, where autistics are free from the constraints of neurotypical ways of interacting. The internet offers a controlled environment to connect with other neurodivergent people from the comfort of home. Autistics can find others that share similar interests, in a nonverbal but still social fashion. Finding other autistic people and forming advocacy groups is giving them a larger voice to stand up to the ongoing campaign to “fix” and “cure” people with diverse neurology and relational styles.

In this autism community, autistics can be their authentic selves. Although autism itself is a diverse spectrum, there are commonalities which can help autistics own their unique identities. They can share common interests, support and promote self-stimulation (like rocking and flapping), and enjoy interactive stimming; they don’t take part in small talk, rambling is acceptable, eye contact and participation are not expected, and the enjoyment of slapstick, riddles, and puns are a fun part of socializing.

Many of my students are integrated at school and have never met someone like themselves until they became part of a self-advocacy group. When they do, it’s as if they’ve known each other forever. They immediately identify common strengths and struggles and often do so with humor. Each of them feels that, if given the choice, they wouldn’t give up their autism diagnosis. It’s what makes them special and is an important part of their identity.

Identity first (e.g., “autistic person” vs. “person with autism”) has become the way of many autism self-advocates. They feel that saying “person with autism” suggests that autism is something bad – that it isn’t even consistent with being a person. For example, you wouldn’t say “person with musicality” or “person with religiosity.”

Autism isn’t a choice.

There are many Pinterest visuals that portray the different ways autistic people exist in the eyes of neurotypicals. This series of Pinterest visuals shows the three common positions: “person with autism” shows a stick figure with a “bag of autism,” “person on the spectrum” shows the stick figure standing “on autism,” and finally, the preferred “autistic person” shows the autism in their brain. This mocks the neurotypical ideal that autism is a choice that isn’t part of their biology. For an autistic person, listening to those with lived experiences is often the beginning of healing their self-identity. YouTube and Facebook offer endless opportunities for neurotypicals to learn from autistic individuals first-hand.

This rise in autism self-advocacy has led to friction from parents of autistic children, clinicians, and scientists. The conflicting question largely being, does autism need a cure or is it simply a diverse way of seeing and relating with the world? With the numbers in autism rising, so too has the number of organizations and businesses claiming to cure and treat autism in the professional community. As a reaction, autism self-advocates have fully embraced the notion of “nothing about us without us,” asking that decisions and policies only be made in consultation with people with the lived experience. The divide is so large and passionate between autistics and neurotypicals that organizations avoid having autistic members sitting on boards due to the ongoing difficulties in the habitual ways neurotypicals have viewed autism and the autistics call them out on each one. It is suggested that, in this situation, there is someone that can facilitate the diverse perspectives without taking sides.

This rise in autism self-advocacy has led to friction from parents of autistic children, clinicians, and scientists.

Autistics are not against all neurotypicals – they hold a valued place for those who fight and align with their voice. They have developed names for supportive neurotypicals such as neuro-kin, neuro-cousin, and autism friendly. If we are to embrace differences today, it is important to adopt this “nothing about us without us” campaign to develop an understanding and an acceptance of those who are different from ourselves. We need to demand that human diversity be valued and rethink what it means to live a meaningful life and feel safe to be who we are without the greater community damaging our identity. We all deserve respect, justice, equity, nonmaleficence, and those of us who are not autistic should be held accountable for ensuring that the marginalized in our world are cared for.


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Author

Kathleen Rooney

M.Ed – Trainer, Crisis & Trauma Resource Institute

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