Why is it sometimes difficult to identify females with autism spectrum disorder (ASD)? Have they taught themselves to behave differently in social situations? Have they mastered the act of a social fake? Or have they simply figured out how to seek refuge and escape?
In working with students with ASD, female students often present themselves differently than their male peers. To dig deeper into this topic, we interviewed Stephanie Smith. Stephanie is 24 years old and is a student at CIP’s Brevard Center in Florida. She also attends the University of Central Florida where she is majoring in political science.
The Challenges of Adolescence for Girls with Autism Spectrum Disorders
At what age were you first diagnosed with autism?
It wasn’t until I was in middle school when a doctor diagnosed me with autism. Prior to that, I was diagnosed as bipolar with ADD.
How did your diagnosis affect you?
I remember feeling horrible about my diagnosis in the beginning. I had to be placed on all new medications and meet new doctors. Now this label is not so scary, and I can better understand the WHY to some of my behaviors. That allowed me to cope better and use the techniques the doctors were showing me to fit in.
I have heard that when a female is demure and not very talkative that she can be passed off as shy. If she gets really emotional and passionate about something, then someone says that’s her hormones, and not emotional dysregulation, which is what they would say with a male student showing those characteristics. I feel that society isn’t going to change anytime soon and it will always be easier to diagnose a guy over a girl because too many people say … it’s just a female thing.
What are some general challenges (at least 3) that you have faced as a young woman with autism?
Not being taken seriously as someone with ASD because most people on the spectrum are males.
Wondering, “Were my struggles hormonal changes or the autism spectrum in me?” During puberty, I was actually put on meds that I didn’t need, and eventually realized it was more of an emotional regulation thing due to puberty than it was ASD. No one considered that it was a bit of both.
Doing girly stuff that has sensory consequences. I thought nail polish and makeup was pretty, but sensory wise I felt so uncomfortable wearing it. If my makeup did not look like a magazine model or one eye was darker than the other, I would have to wash my face and repeat the process over and over. I would usually get so frustrated that I would remove it because it caused anxiety to go out in public with it.
What helped you get to the point where you were comfortable with makeup?
I had to deal with my perfectionist issues and I really needed practice. Then I started to find makeup fun and I liked putting pretty colors on my face. My advice: Don’t wear makeup because you think boys will like you and you need to fit in with other girls. If it’s truly a sensory issue for you, don’t do it. Let makeup be your choice – makeup cannot make you beautiful on the inside.
What in particular have you found challenging in transitioning to adulthood?
My parents not trusting me. To this day, they still feel like they have to protect me. I have a neurotypical sister and I notice that they don’t protect her as much.
Figuring out what is appropriate to say in social situations. I still need help to figure out boundaries with different peer groups. Now that I’m in the workplace, I notice that there is a lot of different levels of social engagement and it’s difficult sometimes to figure out what information you can share with each person. I quickly noticed this the other day when I told my supervisor something that I thought was funny and her response was that was too much information, but if I told my co-worker the same story she probably would have laughed.
How do you cope with or handle that particular challenge as a female?
Sometimes I will ask people, “Am I being inappropriate?” and if someone gives me feedback like that’s TMI, I will thank the person for their honest feedback and let them know it helps me. I don’t want people to gossip about me.
What would you suggest as a coping mechanism for other young women who might experience that challenge?
Don’t do this during a job interview, but maybe on your 1st or 2nd day go to your coworkers or supervisor and don’t fully disclose your challenges, but say in a fun way, “I can sometimes be a little socially awkward” or “I have social anxiety, so please let me know and give me feedback – it is really helpful to me.” You also have to read their body language; is this someone you can have this conversation with? I’ll use a first impression or judge their character as to gauge how much personal information I will share with someone. I also suggest first observing how the co-workers are communicating; you can observe what coworker has what type of personality. You have to learn their interest.
What does self-confidence mean to you?
To me, it is being aware of your strengths and weakness and being proud of your strengths and acknowledging your weaknesses because you have to know what they are. Acknowledge strength, acknowledge weakness and embrace both as a young woman.
What does a self-confident woman look like to you?
I have a girlfriend named Lauren who knows where she is going and knows that she has a place to go. She’s happy in relationships and content with her life. Content is the big word because that gives them strength to help their friends.
What does the term self-esteem mean to you?
Being proud of who you are, what you are, and the components that make up that whole self.
How might you support to another young woman struggling with her self-esteem or self-image? What might you tell her?
It’s important to praise and emphasize good qualities in people because not everyone has the talents that you have but everyone does have a talent and the ability to be great, it just takes time to see it. Many ASD young adults are disgruntled because society has their idea of good, but our good may be something really special within the situations we deal with, such as finding housing and who is going to support us. This sometimes does not allow us time to explore our special traits.
People on the spectrum often have special interests and we need to highlight that there is a place in this world for them. These people have talents and abilities and passion that are lacking in neurotypical people, like Temple Grandin and her passion for cows, they become scholars in their area of interest. Not everyone with ASD reaches that level, but their unique special abilities make them awe inspiring and they can be used for a better purpose. Like Dr. McManmon says, “We are made for good purpose; we just need to have access to that purpose.”
Support for Parents with Daughters on the Spectrum
What level of support do you feel you receive from your parents?
Now, definitely more than the typical age 24-year-old women. They are helicopter parents. I think it was important for me at times, but not so much today. They have also supported me unconditionally in many areas of my life that I did not even ask for but needed. Although, I think their constant support inhibited me as an adolescent because I needed to fall and make mistakes.
That is why they found CIP, so I can fail as an adult, but the staff now provide me support with a non-emotional way that lets me learn from my struggles. I sometimes fall into a pit and the staff shouts advice from the top of the pit, sometimes I don’t listen and fall lower. Sometimes I listen and as I gradually climb up they shout down but as I get to the top they stop talking, although they are still standing there as my safety net. It’s scary as I climb higher because I fear falling down, but on each level I climb I gain more confidence in myself. Growing up, my parents didn’t shout advice, they gave me a ladder, and I couldn’t learn anything from that to apply in daily situations without their support or the ladder. I needed to do it on my own.
In what ways would you like to be supported by your parents moving forward?
Ideally, I would like to be treated as an equal. I want them to take off the ASD label and treat me as an adult. As their daughter, I also have to realize that they are my parents. I guess that is their job to protect me and I really do appreciate it all they do for me. So I’ll live with the protection things, but I need them to trust in me that I will get things done without prompts.
What advice would you give to parents that may be having difficulty supporting their daughter as she transitions into adulthood?
Let them make mistakes and don’t rush in too fast to give them the answer to their mistake. Coach them to come to you for the answer. Also don’t say, “You always make mistakes.” Rome wasn’t built in a day and habits are not changed with correcting one mistake. Taking risks can cause anxiety but it has to be done to grow up.
Dr. Michele Ramsay has over 20 years of experience working with students with learning differences at various age levels and supports (teacher, director of special services, and program director). She is the Director of the CIP Brevard Center in Melbourne, Florida and presents at conferences around the nation on Advocacy, College Readiness, and Executive Functioning Skills. For more information about the CIP Brevard Center, please visit http://www.cipworldwide.org/.
