I recently had the opportunity to attend an event outlining what it means to be an ally to the LGBTQ community and while listening to each individual courageously share their story about their lifelong journey and struggles with the freedom to be themselves without bias, generalizations and judgements from their surrounding communities, I began to realize what we all share as human beings. At our core, the commonality in humanity is the desire to be loved, accepted, supported, understood and appreciated for who we truly and authentically are as individuals.
My experience at the LGBTQ event and Autism Awareness Month got me thinking about what it means to be an ally to an individual with autism or to the people who love them. As I began to write down what I felt an ally would be through my experience with my son, I realized that many of the following could so easily be paralleled with those with any disability or all people in general. After all, we all have things that make us different and subject us to judgment and bias.
How To Be an Ally
- Acceptance. When we are able to accept a person and their situation completely as it is, with a nonjudgemental, accepting attitude, we can then embrace the experience as good, thereby allowing us to see more, love more and have more energy to support and make a difference. Acceptance means removing the qualifiers. People who are in the presence of someone who is truly nonjudgemental, accepting, compassionate and welcoming feel safer and are more comfortable to do things that are challenging for them.
- Do not pity them or their families. Pity is an expression that comes from a negative evaluation of a challenging situation, many times coming across as being labeled as something bad. Autism is a part of my son. It is not who he is. Although some components of it most certainly are challenging, there are many parts of his autism that are special and beautiful. It’s all about perspective and perspective is everything! Choosing to work towards changing an unproductive perspective is courageous, empowering and doable. Instead of pity, practice compassion. Compassion is the willingness to be personally involved in a person’s individual experience instead of keeping a safe emotional distance through pity. It’s the willingness to stand along side those with autism through support, encouragement and help.
- Person First Language. My child is first and foremost a child. He has autism. He is not primarily “autistic.” The word “autistic” means “of or relating to autism or a person with autism.” Although the word “autistic” is accurate, for those of us who live with and love a person with autism, we live with a frustrating lack of knowledge and with unfair stereotypes assigned by the world around us. The word “autistic” does not inspire reactions of a kind nature and ultimately makes it difficult for people to see the whole person as they are past this label. Sadly there are also well-known websites that pair the word “autistic” with the synonyms of “catatonic, emotionally dead, heartless, narcissistic, unfeeling, untouchable, etc.” Not a single one of these synonyms describe my son. I personally see my child first, “with autism,” instead of him just being autistic.
- Never presume the level of competence of an individual with autism or believe that they are unaware of the world around them. The scientific truth is that only 15 to 25% of children with autism tested today fall into this category and who knows if that is even accurate. We are still learning the different ways that persons with autism are able to communicate such as through adapted alternatives like assistive technologies or RPM (rapid prompting method). What we do know…… there most certainly is a person “in there” and it is just unlocking the door to the way they communicate. There are numerous publications, books and blogs written by nonverbal people with autism that allow us the ability to see this perspective and so much more.
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When Lucas was given his diagnosis, I was given the long laundry list from his pediatrician of things he would never do. Things like: “ He may never fully communicate. He may never have friends. He will never show me love, etc.” After deciding to abandon those principles and concluding that no one was going to put a limit or ceiling on my children, neurotypical or with autism, I can tell you that all of these statements have been proven untrue. If I had believed those predictions as true and thought that he had no capacity for learning, experiencing happiness, and developing loving relationships, I probably would not have looked for opportunities to reach him in his world so he could do so. It would have been a self-fulfilling prophecy. Nothing is predetermined and all life is filled with open-ended opportunities!
- Please do not call autism a disease or an epidemic. It is neither of these and can come across as insulting to those who love someone with autism.
- Respect an individual with autism’s need to do repetitive, exclusive movements or speech fragments. Many times they are doing these things to take care of themselves. Their systems process sensory input differently than ours and it can be difficult for them when taking all of this in from their surrounding world. Their sense of smell, hearing, touch and vision can be effected in ways that we simply can not even comprehend. This can be extremely overwhelming for them and these are the incredible ways they have found to self-regulate.
There’s a quote that is numerously repeated throughout the “autism world” and I’m not sure who said it, but it definitely encapsulates my experience of being one of those individuals who loves a child with autism. It states, “I thought I would have to teach my child about the world. It turns out I have to teach the world about my child.” My hope is that my insights about my experiences with my child with autism today and on this blog inspire hope, respect, understanding and love for the autism community.
I thought I’d also include a short little clip of our newest volunteer in the room with Lucas. Her energy, enthusiasm and excitement is nothing short of amazing. All of these beautiful people who so freely give of themselves are the reason Lucas has grown so far in this program and in life in such a short period of time. I am more than grateful and humbled every day by their love, compassion and unbridled willingness to do the fun, crazy things they do every day in that playroom to give my son nothing but opportunities. Enjoy!