In this line of work, it has always been a challenge trying to balance my autistic identity with that of being a researcher and advocate. Despite many autistic people having their own unique perspectives to bring to the table, many of them are not included in the more clinical discussions when it comes to how their own experiences can inform treatment.

Part of this comes from the belief that autistic people do not have epistemic authority – which is the right to decide how to define their autism – because they cannot see themselves as “objectively” in their behaviors and mannerisms like clinicians can. That belief is in many ways unfounded and biased by preconceived notions. In fact, many autistic people are able to reliably self-report their own experiences, understand that they are different from others, and struggle with trying to belong while still being authentic to themselves.

Another part of it comes from the obstacles of even entering the field in the first place – lack of advantage or privilege, financial difficulties, or simply the field of psychology engaging in a lot of social gatekeeping and hammering in a very medical view of how people and disability operates.

All of this makes it really hard when I have to work through these tensions and have talks with other professors and students who don’t share those same experiences. However, I try my best to understand how the people talking with me ultimately want to help, and I tackle that in order to establish that common ground. From there, I can work through what ways are the most effective in helping and advocating for my community while collaborating with others who have deeply different backgrounds. It can be deeply challenging at times, but it is ultimately very much worth it.

The answer to the “autistic” (identity-first) vs. “person with autism” (person-first) debate may seem simple at first, but I get this question a lot from people. I think this is because the language of how we describe disability and marginalized groups are so complex and individual.

In many educational programs, person-first language is usually taught as a rule to help emphasize the individual and humanize people with disabilities. This is meant to combat the ways in which people historically have often been defined by stigma due to the label of disability being not only inseparable from the person, but as making the whole person less worthwhile (like calling someone schizophrenic, depressed, etc.).

However, autistic people often see their autism as an identity. It can often be a unique way of viewing the world that gives them a positive community to belong to. It is only seen as disabling in their eyes because of how people exclude them because of their differences, not because the experience of autism is unpleasant in and of itself (what is known as a “social model” of disability). Many see their autism not as a disease like depression or schizophrenia, but as an inseparable and positive part of their lives that they want to be embraced. Furthermore, autistic people often see using the person-first label as derogatory because they see it as a given that they should be treated as people rather than be given a label so that people will humanize them beyond their differences. In this way, identity-first language is often empowering to an autistic person and allows them to feel like their differences are a positive part of their lives rather than a burden or disability that it often is portrayed and thought of as.

Despite all of this background, the label that someone should use for an autistic person is ultimately individual. While the community leans closest towards identity-first, it isn’t universal. Some autistic people might see their autism as a separate part of themselves that should not define them, and that is up to that person to decide for themselves. Thus, using identity-first language is a great rule to start, the larger answer is to understand the person in front of you and how they see their identity, ask questions, and adjust accordingly.

I wrote a whole paper outlining the complexities of ABA and the difficulties when it comes to researching it, which you can read here.

The condensed version is that the overall premise and implementation of behavioral therapies (which includes not just ABA, but Positive Behavior Supports, DTT, etc.) are fundamentally flawed and harmful to autistic people. Regarding the very few positives, ABA may be effective in helping establish early language skills and verbal communication in very young autistic children (between 12 and 24 months old), which might be beneficial if Alternative and Augmented Communication (AAC) devices are somehow inaccessible. It can also target areas in which autistic behaviors are directly harmful to them, primarily self-injurious behavior. However, behavioral therapies should only be used as a last resort in these cases when all other alternatives have failed.

This is because many studies have shown questionable results regarding ABA’s success in other areas, mainly in increasing social skills and reducing autistic traits - for instance, stimming (rocking back and forth, flapping hands, etc.). Much of this is based on the idea that these traits and differences in processing the world can be “cured” and that they need to be cured for the person to have a higher quality of life. Ultimately, autism cannot be cured, and trying to cure often creates more mental health issues for autistic individuals than they solve. While behavior analysts claim that the culture is shifting, many individuals report being pushed as children to try to “act and talk like other people” through behavioral conditioning and punitive treatment if they don’t cooperate, which is deeply traumatizing. Furthermore, much of the research surrounding ABA talks through the stigma of parents and families to how people will perceive them rather than thinking about the interests of the child and how society should change to be more accepting of them as autistic given that many of their behaviors are different but often harmless.

Behavioral therapies get lots of traction in research partly because of the differences in how therapists and families understand autism versus the autism community and their feelings about themselves. But having ABA as the only tool and using it to socialize autistic children to be normal ultimately pushes down their differences in ways that don’t help their mental health or sense of well-being. Therefore, focusing on more acceptance and emotion-related or even humanistic therapies that help autistic people come to terms with their identity is likely to allow for more authentic growth rather than forcing them to mask their autism in order to avoid stigma and having that ingrained from the beginning with ABA that focuses on socialization and behavior reduction.

If you would like a list of resources for alternative neurodiversity-affirming therapies and what they look like compared to behavioral therapies, the Therapist Neurodiversity Collective has wonderful resources breaking these aspects down in ways that I hope you find useful.

Like many in the autism community, I have a massive amount of contention with Autism Speaks as an organization. While their work has slowly been inching closer to neurodiversity and acceptance, much of their history has been mired in highlighting the priorities of families who believe their child’s autism is a burden and curse that needs to be “cured”.

They often neglect to involve the autism community in meaningful ways that can spread positive awareness and decrease autism stigma. Most importantly, however, much of the research they fund has hinged on developing genetic markers for fetuses that could potentially detect autism before birth, thus allowing parents to make decisions regarding abortion.

Alongside the more subtle ways they talk about curing or mitigating autism and family testimonials in this direction with resources they provide, they effectively dehumanize autistic people. Whether intentionally or otherwise, they often promote a eugenics-esque view that dismisses the positive value of autistic people and the uniqueness of their perspectives and lives. Unfortunately, Autism Speaks is also the largest funder of autism studies in the world and is largely part of the history of why autistic people have continued to be stigmatized to this day.

Therefore, other organizations run and founded by autistic people like the Autistic Self-Advocacy Network (ASAN) are critical to support, promote, and draw resources from to help create acceptance and understanding of these experiences and allow autistic people to have the power to shape the meaning of their lives without dehumanization or fear.

The most important thing I think when contemplating autism as a potential part of identity is knowing that everyone processes this part of themselves differently and has a unique relationship with it. This is because regardless of the shared experiences and community, everyone’s autism is their own, and the challenges and beauties that come with it are always individual.

Many autistic people know throughout their whole life that they are different from others, but due to lots of barriers in diagnosis and resources, they don’t think about if they’re autistic until later. It can often be very freeing to know that you can make sense of why you think the way you do and find others who feel the same – to have a label and term to grasp onto. For others, it might be terrifying to have that label because they are afraid of the stigma placed on them and how people will perceive them, which is very understandable.

Whether you fall into one, the other, or somewhere in between, your feelings contemplating this are all valid and okay. It may take time to process it all and find where you belong, but there are support groups both online and in-person as well as resources that might help you on that journey.

If you would like to explore further regarding this question, there are tests on aspietests.org and Embrace Autism that can help give you more information and make sense of this part of your identity (the Autism Quotient is a great starting point to then explore more from there).

I think while some might argue that it makes the diagnosis less “valid” because the criteria would be too broad, autism is an identity that should have diversity and various perspectives as a vibrant community.

However, many of the diagnostic instruments are so focused on providing resources that are scarce that they tend to be much more specific and exclude those who should have resources. For instance, women are often theorized to fall under the radar for diagnosis because the instruments used tend to consider social differences that women are often socialized to avoid due to gender norms. A similar case is true for cultural and racial minorities because their differences change the autism presentation and are affected by discrimination and stereotypes of those groups.

Furthermore, the instruments used for diagnosis only consider outward behaviors that an older autistic individual might have learned to mask over time. This means that autistic people may internally have the same experience, but only the one who presents as “autistic enough” gets diagnosed. With all of this in mind, I think that in lieu of a more formal diagnosis, self-identifying as autistic and taking tests that can help start the process of a diagnosis can be important and gratifying for an autistic person who is discovering that part of their selves and the communities they want to be a part of.

Despite this assertion, this does not mean that those with some autistic traits are necessarily “autistic” – they might be, but it’s hard to say. It ultimately depends on the individual talking with the community and others to see how much they belong and if they feel that they have a shared positive space for themselves.

If you want to learn more and take tests regarding if you might be autistic, aspietests.org and Embrace Autism are great resources to look at – especially the Autism Quotient, which is a good test to start with and then explore and branch out from there.

When it comes to diagnosis, part of the question depends on how old your child is. If they are showing language or learning delays or is being less communicative or social early on (especially before the age of two), it is imperative to talk with your primary doctor and get in touch with an autism specialist who can give a diagnosis and start the process.

This is not about panicking emotionally about their future, but about preparing and making sure that they have as many resources early on as possible. These are all complicated factors and require lots of reflection and thought, but the earlier you can get a diagnosis for your child, the better.

Thinking about my own experiences with my family and hearing from other families of autistic children, the hardest part that people seem to grapple with is how an autism diagnosis changes the expectations and raises a bunch of complicated questions. How will they learn and function? Will they be able to make friends? Do I know enough to help them be happy? Can they take care of themselves when they’re older? What about the dreams I had for what my kid might be? All these ideas revolve around the vision of what you might have for your child, and it can feel like a loss when that vision is flipped upside down by a force that you can’t possibly control. Those feelings are totally understandable.

Despite that though, just because your child might be autistic does not automatically mean that they will be non-verbal forever or in special education forever or even mean that they won’t make any friends. With the right resources and people who understand your child and allow them to learn but still be true to themselves, they absolutely can find their own happiness and be able to still be around most kids and people.

But that does mean to some degree knowing that your child is their own person, and as they grow, they might see things differently and have dreams that you didn’t expect them to have. And all of that is okay as long as you try to be as supportive as you can within reason. As much as autism is portrayed as a burden, it can very much be a gift and an identity that makes them happy. This also doesn’t mean that they have to be “savant” either to succeed and be happy. Many autistic people have average intelligence who still see incredible parts of their identity and community every day.

When it comes to resources, that is all dependent on the age of your child and are individual in nature. If they are younger and are less verbal (especially 18-24 months old), the focus in therapy should most likely be establishing language and communication so that they have a higher chance of being in a general education classroom where they can be fully included. This does not mean socially teaching them how to talk like other kids, but all about learning and vocabulary so they can communicate their thoughts in feelings in their own way.

However, as your child gets older, the picture often can become about encouragement and nurturing your child to help them understand their differences in order to buffer the stigma they likely will face. While therapies related to communication and eventually independent living are important, none of that can be communicated and felt without being able to accept your child’s autism and teaching them that they have value because of their differences rather than in spite of them. From there, the resources and training have to be individual to your child, what they need, and what helps them be the happiest.