Parenting and Autism – A Mother’s Thoughts on Autism and Person First Language
Tarra McPhail, Mother & Behaviour Consultant
Person first language is considered the correct way to refer to an individual with a label; with a disability. There is a widespread and pervasive understanding that we should see ‘the person first’ or ‘the person - not the disability’. The thought is that if I say “a person with autism” instead of “an autistic person” I am treating that individual with respect and recognizing them as an individual and not a label. I challenge this notion as I find it places a negative and ableist understanding of disability, of autism, onto a person. Why can’t I celebrate the individual as autistic? Mostly, the answer lies in the fact that the majority of society views Autism as a negative. Autism to many means that something is broken or different and requires fixing. This does not match how I see my child or any other autistic individual.
I view my child, as most mothers do, recognizing that there are various threads that weave together to create the fabric that is my son. My son is creative, artistic, funny, smart, engaging, autistic, demanding, loving, sensitive, stubborn, inquisitive, thoughtful, caring, eccentric, rule-governed, inpatient, forgiving, kind, and the list goes on. What is interesting is that as you read off this listing, some of these threads would be considered as positive and others negative by people within society, depending on how they have been socialized to accept them. I consider my child autistic in the same way that I consider him all the other things off the list and more. It is an aspect of his personality, one of the many things that make him who he is. I work hard to not make judgements about the positive or negative aspects of every label that could be applied to my child because I understand that they will all be interpreted differently based on the social construction of the environment he is in.
“I am not interested in making my child ‘normal’. I appreciate all the threads that weave together to make him who he is. Autism is one of those traits and removing that ‘autism thread’ would damage the fabric that makes him who he is. What mother would want that?”
I do have to understand that those that surround him will make those assumptions. I understand that this occurs without question and I often find myself ‘fighting’ against those assumptions wherever I can. I have challenged those who fight for a cure for autism by suggesting that it may not be such a negative experience if autistic individuals were allowed and accepted to be who they are. To fight for a cure, one must accept the attributes of an ableist society that denigrates difference. I would love to see society take a big step forward and begin to embrace autism as a variation in functioning rather than a disorder that needs to be cured. I am not interested in reshaping my child so that he can fit within the normative standards of society. My aim as a mother of an autistic child is to continually review how I manage the variation in the way my child functions. I am not interested in making my child ‘normal’. I appreciate all the threads that weave together to make him who he is. Autism is one of those traits and removing that ‘autism thread’ would damage the fabric that makes him who he is. What mother would want that?
I am interested in helping him make choices and develop strategies that will help him exist in this ableist society with as little harm as I can. This means that I need to make him aware of what it is that society expects of him while giving him permission and the advocacy skills to make choices that may at times “break the rules”. At this point, I want him to be aware that he is breaking the rules while I work hard to challenge those rules on his behalf. As my child grows and changes into a man it is my greatest hope that we will work together to challenge those rules, or social norms, that impact him negatively. For now, I will continue to challenge them on his behalf and fight for a day when my autistic child can be celebrated for his autistic traits the same way he is celebrated for his creative, artistic, funny, smart, engaging, demanding, loving, sensitive, stubborn, inquisitive, thoughtful, caring, eccentric, rule-governed, inpatient, forgiving, kind traits. Who’s with me?