Many parents in our community feel they don’t know the “right” way or time to tell autistic children about their autism. For this reason, we are grateful for a recent study showing that “it is probably best to tell people they are autistic as soon as possible.” We talked with Bella Kofner, an author on the study who is also autistic, about what the study reveals; the personal experience of being told about one’s own autism; why it is crucial for autism research to include autistic direction; and some takeaways for both parents and/or autistic people themselves.
Thinking Person’s Guide to Autism (TPGA): Why did you decide to do research on the “right time” for parents to tell autistic children they’re autistic?
Bella Kofner: I wanted to do the research because parents may not know when is it the “right time” to tell their children that they are autistic. Parents may be struggling on how to start a conversation about how to tell their children about their autism, and when to tell.
I also wanted to do the research because this reminds me of my own experiences as an autistic person. I was diagnosed at the age of three with autism, and I was first told about my autism when I was ten years old. I did not really think too much of my autism until I got older. When I got older, I reflected on my life experiences and my autism. After taking the time to reflect, I feel very comfortable with my autism to the point that I tell people about me being autistic.
TPGA: Did the results of your research surprise you in any specific ways, or were the results along the lines of what you expected? (Or was it a mixture of both?)
Kofner: It was a mixture of both for the results. What surprised me was that participants who learned about their autism later on in their life had more positive emotions when they first learned about their autism, which contradicts the second hypothesis about learning one’s autism at a younger age would be associated with positive emotions about autism in adulthood. One result that aligned with what I expected was that the findings supported the first hypothesis that learning one’s autism at a younger age was associated with heightened well-being and quality of life (QoL).
TPGA: Why is it important for autistic kids to know that they’re autistic, according to your respondents? And in your personal opinion?
Kofner: In my personal opinion, it is important for autistic kids to know that they are autistic early on because this would allow children to start developing as people while taking their time to understand who they are as a person with autism. The more that parents wait longer to tell their autistic kids about their autism, the more likely that children will have negative feelings about themselves as they get older. When children are told early on about their autism, this will lead to children gaining self-awareness and feeling confidence in themselves which can have a positive impact on their well-being and quality of life as adults.
Based on the responses of participants, there are examples of why it is vital for autistic kids to know about their autism at a younger age. One participant, who first learned about their autism at the age of eight, said “I suppose it helped me better understand why I felt and acted different from everyone else.” The same participant said about their feelings about their autism now ” I am proud about my identity. As someone who also researches autism, I have a greater appreciation toward learning more about my own identity and how that differs from others.” This shows how the participants express positive emotions from when they first learned about their autism, to feelings about their autism now.
TPGA: What are your primary recommendations for parents, when it comes to how and when to tell kids that they’re autistic?
Kofner: When it comes to how, parents should tell their children in a comfortable and safe environment for the child to be in. Parents should tell their children by using language that the child can understand. Parents have to take into consideration the child’s developmental level and how to explain autism to their child in a way that allows the child to understand themselves. Parents should not assume that the child is going to react this way or that way, so parents have to know how to respond to the child’s reaction in ways that show that it is ok for the child to feel this reaction and know that they are there for the child to answer questions or to talk about anything.
When it comes to when, it is personally up to the parents to decide about telling their children about their autism. But, parents should not delay in telling their child about their autism because the child may question who they are and what their life was like in adulthood if they do not tell their children early on. So, it is better for children to be told early on about their autism so that children can grow as individuals, and understand themselves as they go through life as autistic people.
TPGA: How were your survey participants selected? Do you think the demographic profile of the participants affect the results in any ways?
Kofner: Participants were recruited through social media or at universities. Participants that were interested emailed the third author and received a link to do an online survey in Qualtrics. Students that were enrolled in any institution of higher education were allowed to participate. A total of 78 autistic students were the participants in the study. The demographics did not affect the results in any way.
TPGA: Most of the researchers on this study were themselves autistic. How do you think that having autistic researchers affects the direction and focus of autism research?
Kofner: Having autistic researchers is very important in autism research because it is important for all voices, including autistic people, to be represented in autism research. If autism research does not incorporate autistic researchers, then people may struggle to understand autism and topics in autism research.
This study was the first study that demonstrates that learning one’s autism at a younger age may have positive impacts on emotional health among autistic university students. This study is an example of how the perspectives of autistic people are vital because how can people be educated in autism and tell their children about autism if there are no autistic researchers.
Over time, the knowledge of autism has grown in society and people are accepting of autism. So, it is up to us to encourage people to collaborate with people with autism in autism research. By including autistic researchers in autism research, we can bring awareness about topics in autism research and we can learn in the process on why autistic researchers play a vital role in autism research.
TPGA: Did you have any self-identified autistics among your survey respondents (meaning they were never formally diagnosed, or their parents never told them but they figured it out)? If not, do you plan to do research in this area?
Kofner: 14.1% of participants found out about their autism on their own. That means that they were not told by their parents about their autism and learned from other sources which include the media and autistic people.
TPGA: Is this study going to lead to more research about the timing of autism diagnoses discussions between parents and autistic children, and if so, what are your goals for that research?
Kofner: This study can start to address concerns that parents have reported in prior literature in terms of how to start a conversation with their child about their autism. Future research should focus on asking participants when they were diagnosed and when they learned they were autistic to examine if the timing of the diagnosis itself or potential delays between being diagnosed and learning one’s autism impact outcomes in adulthood.
Bella Kofner is an autistic person who recently graduated from the College of Staten Island with a masters degree in Special Education 7-12 (MsEd). She became involved as an undergrad with Project REACH, a program that provides support to autistic and non-autistic students. She is currently a researcher with the program.