The People I Trust to Make Choices About Identity or Person First Language


I am a parent of three children, two of whom have an autism diagnosis. I have a diagnosis of dyslexia, dyspraxia as well as social communication, attention and sensory regulation difficulties that are not as yet formally diagnosed. I have a keen interest in autism research and I believe strongly in listening to the voice of the autistic community in order to inform my parenting choices for my children and to broaden my understanding and insight of autism in general.

My daughter is now 12, so she is heading into her teen years. I believe that fostering an understanding and acceptance of yourself as you grow into the teen years is paramount for all teens, but I feel it is especially important for my daughter. Since she was diagnosed with autism, it has been important for her and us as a family to understand what autism means for her. This includes how her symptoms manifest and the ways by which we can overcome difficulties together through support and finding the most appropriate strategies.

One thing that has been paramount to her and my son is having like-minded people around them. For both of my autistic children having autistic peers to socialize with has been the most beneficial and enriching element of understanding themselves and accepting their autism. I think having an autistic support network and community is extremely important and beneficial for people with autism and their families.

One particularly interesting concept to me as a person with autistic traits and as a parent of children diagnosed with autism is the idea of identity first language within the autism community. I’ve questioned what using identity first language means for me and how that notion impacts my children, particularly my daughter who is emerging into her teen years.

Identity first language is the difference between saying “I am autistic” rather than “I am a person with autism.” The difference is very subtle, but what it implies can depend on how it is used. “Autism” can still hold a negative connotation, especially to the older generations and by claiming “autism” as an identity it allows a person to feel empowered by their diagnosis, as it is them and they are autistic.

There is no right or wrong when it comes to how a person feels is right for them to identify. One person may feel empowered by identity first language, while another may feel limited by it. I think for those of us who advocate for autism awareness without a diagnosis, our verbal language use should be met with caution. It is only down to an autistic individual themselves to determine whether identity first language is most appropriate for them.

As a parent and advocate, I use identity and non-identity-specific language intermittently within my writing because I feel there is no right or wrong and both have their place depending on the situation at hand and what is being communicated. I also feel that professionals need to develop a better understanding of identity first language in order to support those with autism fully and respectfully.

How my daughter chooses to identify as she grows is down to her. I hope that however she chooses to express herself and explore her autism, it will be a positive and enriching experience for her. For now and within my own writing, I will continue to choose to alternate between identity first and non-identity first language. I feel it is most important that people with autism / autistic people continue to be listened to and supported, and their views respected regardless of how they wish to identify.

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Thinkstock photo by Tinbee.

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