Autism: Awareness to Acceptance
So, what exactly is Autism Spectrum Disorder(ASD)?
Autism is a neurodevelopmental disorder characterized by impairment in social interaction, and communication, and is often accompanied by restricted interests & repetitive patterns of behaviors or activities. At present in the United States about 1 in 59 children have autism and according to the World Health Organization about 1 in 270 people have autism globally. Diagnosticians refer to a “spectrum” of disability due to the fact that many individuals with autism display a wide range of different behaviors, and differing degrees of functionality across many different tasks- (e.g., academic skills, household task, social communication or dressing & hygiene.)
For more information about how autism is diagnosed, and the characteristics of ASD, I recommend checking out this fact sheet from the CDC.
Additionally, according to a community report from the CDC, non-white children in the US are less likely to receive early diagnosis & therapy and in some cases are misdiagnosed by health care professionals. This is likely due to implicit bias, stigma, lack of access to healthcare services,
and non-English primary languages in the home. The prevalence and the disparities of autism diagnosis and care worldwide are much greater in many countries or still unknown. So, understanding the intersectionality of neurodiversity and other factors such as race, and socioeconomic status are also extremely important for creating more equitable access to care and resources.
Early Signs of Autism
Being aware of the early signs of autism is very important for increasing the likelihood that individuals will receive adequate support and therapy as soon as possible from a qualified professional: Here are a few things to look out for in young children from the Association for Science in Autism Treatment which are possible early indications of Autism:
loss of previously achieved language milestones, including babbling
lack of pretend play
lack of pointing or looking toward where another points;
lack of response to one’s name, or decreasing response to name; and
lack of pointing to indicate needs and lack of response to pointing behaviors of others.
If you or a parent you know has a young child and some concerns about their development, there are a few free available pre-screening resources that may provide further information about whether or not to seek formal evaluation from a doctor. Remember that although these tools may be helpful, they do not replace diagnosis or advice from a trusted professional and seeking an evaluation to be sure is the best thing to do. Check out this screening checklist which can be accessed in multiple languages to get an idea of possible next steps to take. For parents of newly diagnosed children, here is another helpful packet for learning about potential resources, or advocacy for resources in your community.
So what can we do as a community?
Well, this is where the word acceptance comes in. Knowing the early signs, characteristics and diagnostic criteria are important but awareness alone is never enough. Ensuring that we treat autistic individuals with respect, and dignity, and accepting their differences is just as important. Additionally, it is important to acknowledge their strengths and contributions to society.
Here are 3 initial suggestions for beginning to do better and be a more inclusive society:
1. Acknowledge and become aware of neurotypical privileges.
and start to seek out resources for learning about ableism and ways to practice anti-ableism on a regular basis. Assuming that you are not-ableis is not okay and it is likely that there are still many things you will need to continuously unlearn- including the way that you speak about and speak to people with autism (see suggestion #2 below). It is only once you develop the necessary awareness and acknowledgement of your biases that you can you can even begin to effectively advocate for and uplift the autistic community.
2. Be mindful about your language when talking about autistic individuals.
Some autistic people have publicly expressed that some of our current communication habits are harmful and that the way we often speak suggests that autistic people are inferior or may even ignore important aspects of who autistic people are. One example of this is the use of identity-first vs. person first language. Especially in contexts designed to provide a therapeutic and supportive environment for autistic individuals, it is imperative to be aware of the fact that medicalizing language may not be helpful for people in these situations and create more stigma. So, when in doubt and whenever it is possible, it is a good idea to ask the individual how they would like to be referred to and make adjustments to your behavior accordingly.
3. Listen to diverse autistic voices with openness and a willingness to learn.
All the “experts” in the world will still never have the lived experience of actually being autistic so listening is a major key. This also includes listening to those who are non-vocal. It simply may require more effort to learn on your part (you can listen with your eyes too ;-) By paying attention with careful observation, you can learn what non-vocal autistic individuals prefer, or don’t prefer and receive vital information about how they might like to be treated. Making assumptions about what a person wants or doesn’t want is not appropriate and just because a person is non-speaking does not mean they are not able to let people know how they would like to be treated.
Finally, as the saying goes “If you’ve ever met someone with autism, then you’ve just met one individual with autism.” In other words, every individual is unique and it is important that we be attentive to the individual needs of each person we come into contact with so that we can provide them with the best support possible.
Understand, Unlearn, & Be Kind Always,