Kayla Tellier is an autistic self-advocate who is currently writing a book on autism and pregnancy. Have you experienced pregnancy as an autistic person? Your expertise is needed! Find information at the end of this article about participating in a research study that will inform Kayley’s book and help other autistic people plan their families.
Pronouns & language
I guess if I had to choose, I go by she/her pronouns because it’s easiest and that’s usually what people default to, but I’m not super attached to them. I usually prefer to go with identity-first language when it comes to my autism as it is such a huge part of who I am and I know that I wouldn’t be the same person without it. It gives me a different view of the world that not everyone gets to see and I’m happy to be one of the few that gets to be part of that.
My autism journey
We pretty much knew I was autistic from the time I was 6. My family doctor sent me in for testing because of some of the concerns my mom brought up and all the specialists verbally told my mom they thought I had Asperger’s Syndrome. But the pediatrician who had to put all the clinical results together and give me a diagnosis told my mom that she was being an overprotective mom (even though my brother who has DS was doing much better than expected at the time). The test results were enough to get me the extra help I needed in school, and I was good until I got out of high school and lost all of my structure. That’s when I went back to get a formal diagnosis, I finally got in at the end of 2014, just before a turned 20, and got a diagnosis of autism spectrum disorder. The doctor who diagnosed me looked at my old reports as part of the process and told us that he believed the pediatrician I originally saw probably couldn’t decide where I fell on the spectrum and decided I was high enough functioning that I didn’t need a diagnosis. Having my diagnosis gave me the confidence and ability to reach out to places like the Canucks Autism Network, which lead me to the Autism Center and other organizations like Voices of Autism.
I’ve always had a really hard time reading people, and most people don’t say exactly what they mean or feel which made it hard to keep friendships and Relationships and to know when the other person was no longer as interested in the relationship as I was. This led to fear of relationships for a while, until I met someone who was very honest about his thoughts and feelings. When it comes to family planning, there is very little information about/for females on the spectrum in general. There is no publicly available information on pregnancy and parenting experiences beyond a few personal blogs, which only give you a single point of view and experience.
Sensory sensitivities and pregnancy
One thing that I knew was that, even for neurotypical people, the sensory experience can be awful during pregnancy and I already struggle. That scared me, especially not really knowing what to expect, when every pregnancy is different. I had decided that if I wanted kids someday, I would adopt, but the decision never really made me happy as it was based on no information. So, my boyfriend suggested creating a study because there are autistic women who have gone through the experience (despite the lack of information or before they knew they were autistic) and writing a book to help others like myself who have fears and uncertainties.
I’ve discovered, through help, some research that has already been done about Autism and Pregnancy and Parenting. So, I want to make the helpful information from those studies available through the book and fill in the gaps that they didn’t explore or at least didn’t provide enough information about when it comes to the questions I have and the questions I found from others through Facebook and Reddit searches.
My hope is that this will provide the information that people need to make a confident decision, even if that decision is that we don’t want to be parents or have kids of our own because we can’t handle the experience. But, maybe, it will also help some people feel more secure or at least know what to expect (i.e. the best case, worst case, and typical experience) if they have kids of their own. Hopefully, it will help them find health care professionals that fit their needs, by knowing the right questions to ask.
Common challenges autistic people face in pregnancy and family planning
Communication with professionals (Doctors, other healthcare workers, and Social Services)
Many individuals have trouble explaining sensations during pregnancy to their health care providers and finding health care providers who communicate clearly with them. They also feel that the process of birth is not explained to them very well and it makes it difficult for them to feel adequately prepared. This is a huge issue, as when there is a lack of communication ability on either side, serious issues can be missed. And not being adequately prepared for things like birth, where everything is already likely very overwhelming, can make communicating during that time even more difficult. It’s important to provide tools to help with this communication on both sides, just like we do in other overwhelming situations for autistic individuals, and I hope that my book will assist with this.
Sensory Processing Issues
This leads to difficulty with communicating from the autistic individuals’ side, whether that from not quite being able to describe a single sensation or being so overwhelmed from everything that there’s just too much happening to process one thing individually. One thing I would like to explore is if at a certain point this may also lead to situational mutism for some autistic individuals as well, as the studies were not clear on that, but that is something I often struggle with when too overloaded with sensory stimuli. It is important to note this because I know that when I can be given examples of what types of pain and severity I may be feeling by my doctor in other situations, I find that very helpful to focus my brain and pick the closest one. Providing examples of common pregnancy sensations and things that may indicate complications or other things that should not be happening could be helpful for other autistic individuals in assisting with communicating with their doctors. I’m planning on doing more research into this and hoping to be able to develop a guide for some of these sensations to put into the book, in hopes that this will be helpful for others.
Difficulty Dealing with conflict/Avoiding conflict (Mostly for Autistic Fathers)
This is an issue that a couple of the parenting studies mentioned being more common in autistic fathers than mothers, and I think it’s important to note, because when you don’t realize that you are doing something you are more likely to continue to do that thing, and things like avoiding conflict instead of talking about it can be very damaging to a parent-child relationship. Even if you struggle with it, your child will see you trying and that will make all the difference in their eyes.
Social Services Interventions
This was a big issue for many autistic parents and has made it more difficult for autistic individuals to disclose their diagnosis to their health care providers (which could contribute to the communication barrier) as many times Social Services got involved simply because they believed the autistic individual could not be a good parent because of their diagnosis. The parenting studies that have been done however show that this is not the case, while most autistic parents tend to have a different style of parenting than what they deem to be typical for good parents, they still seek to give their child the best life possible by putting their child’s needs above their own and seeking ways to boost their child’s self-confidence. This tells me that Social Services needs better training and to not get involved unless an issue is actually brought to their attention from a health care provider, beyond the fact that they are autistic. As that fear has set Autistic people up for failure from the start of pregnancy as they then become afraid to ask for the help that they need because they don’t want to look like bad or inadequate parents, but every parent needs help at times, no one should be judged because the help that they need may differ from the typical.
Project timeline and more details
My goal is to get the book out by Autism Acceptance month 2023. I am currently working with a researcher and we are going through the ethics approval process and trying to get further funding for the project. Part of my timeline will be based on how things go with that.
The book will include some more in-depth research into sensory issues during pregnancy and mental recovery time. As well as some references from other autism studies to do with pregnancy and parenting that have already been done. I also plan to include pregnancy journal activities and some helpful communication images and guides for those that decide they may want to go through with having a child of their own. These are all things that I would love to have myself, so I’m hoping through my research and talking to people on the spectrum that have been through the experience, I will be able to get or develop those helpful guides.
How can you help?
People can help by spreading the word about the study to any autistics that they know who have had children of their own. The more people we can get to participate in the study, the more accurate overview we’ll be able to get about autism and pregnancy. To start we are going to take a group of up to 20 individuals to do a pilot session of the survey and get feedback, before sending it out to as many people as we can get to participate.
Send Kayla an email at [email protected] if you want to participate in the pilot session.