I feel I should just acknowledge from the start that before I began writing this month’s article, I had to Google the term “Autism Empowerment Month”. I had no idea that this term was even in use or what it involved. It is now April, and whether you refer to this month as Autism Awareness or Acceptance month (I have heard of those) the fact is, if we truly want to see a society that is more aware and accepting of people with Autism, their families, and the providers who care for them, the Autism community and society as a whole still has a lot of work to do.
It is true that greater public awareness and efforts towards earlier screening and identification by medical professionals over the past ten to twenty years have certainly helped create a more positive outlook for those living with Autism and their families. However, I think when we talk about being supportive of people living with Autism, it is important as much as possible to think of advancements and supports which can serve the greatest benefit to the whole population, and not just a specific portion. It is very important to understand that Autism is a very broad and often complex diagnosis and that every individual has their own experience and to also state that a diagnosis of Autism can range from someone who is able to live on their own and navigate their community, work a part- or full-time position and possibly even obtain a master’s or PhD. However, for many children and adults with Autism, life can involve challenges such as limited to no spoken language, possible self- injurious behavior, difficulties with wandering or bolting from safety, difficulty with regulating emotions (which may involve outbursts), physical aggression, or meltdowns and unregulated seizure disorder among other challenges. Autism at this level can mean that the individual often requires 24-hour care and support.
However, with as much progress as the Autism community has made over the past decade, by and large, the public image of this condition is still a very marginalized picture, limited only to those capable of functioning at the highest levels of independence. In reality, there is a whole different side to the Autism spectrum who are just as worthy and just as deserving of our support, inclusion, and acknowledgement but who are hardly ever seen in the media or in public ad campaigns. Furthermore, if we are ever going to have hope of creating a more inclusive and accepting world for people with Autism, society would benefit from recognizing that we aren’t, in fact, being accepting from the way things stand right now. Instead, we are being very exclusive and giving families and pre-professionals an inaccurate, or rather unbalanced, image of what life on the Autism spectrum can look like.
I don’t mean to suggest that self-advocacy is a bad thing or that self-advocates don’t or shouldn’t have a place at the table when we talk about Autism. They should. But so often, the only people society hears from when talking about Autism are those with higher levels of independence.
Then there is the matter of referring to Autism as a “Difference in Neurological Wiring as opposed to a “Developmental Disability”. Phrasing autism as a “Neurological Difference” is an effort to put a positive, less serious spin on a condition that typically begins in early childhood and will affect a child’s development, social interaction skills, communication, executive functioning, and daily living skills well into adulthood regardless of the child’s level of impairment. I do believe in teaching children with disabilities to focus on their strengths and to help them develop a positive self-concept and sense of self-worth. But I also believe in acknowledging their specific challenges, explaining to them that challenges are not a source of shame or fault but instead a part of life, and Autism, call it what you will, is just one of theirs. This Autism Acceptance Month, we need to get real about exactly how broad and how challenging Autism can be, and if we are going to call it that, we need to make a far better effort at including and accepting the entire population, not just a small portion.
Please note: The information provided in this column is for informational purposes only and reflects the author’s opinion. It should not be considered medical advice or a substitute for professional consultation. If you have any questions about this topic, please reach out to us via our contact form.