Hi! This is the story all about how my world got flipped, turned upside down…
Ok, so I’m no fresh prince(ss). But I can tell you that this all threw me for a bit of a loop, even though it wasn’t really unexpected.
My Story as a Girl Getting Diagnosed at 19
I’ve always felt different somehow. Kind of wrong, off, strange, weird, *insert more adjectives here.* Just a deep feeling in my gut, almost every day making me wonder what was up with me.
I used to ask my parents if the doctors told them I had mental challenges when I was born and they were just waiting to tell me or something. And of course, they always said no – that was the truth, after all. But I always kind of doubted them. I just felt so different that I couldn’t imagine that I wasn’t.
When we would watch movies about kids that were adopted and they had the moral struggle of whether to tell the child or not, I would always try to ask my parents in a roundabout way what they would do in that situation. If they would tell the child they were adopted, or when they would tell them. And my dad would always say something like, “Why tell them? If they are happy, why do they need to know? I could just create problems.”
So, my little brain decided that there must be something wrong with me, and my parents knew about it, but thought it would create problems to tell me.
So I was always wondering this in the back(ish) of my mind for years; like ever since I was 6ish, maybe?
Why it took so long
I’m the kind of person that people would say I don’t “look autistic.” I look perfectly normal (though I’m not completely happy with my cheeks…). I reached my milestones early.
People said I sounded like a little adult because I spoke in big sentences with big words. I read early. I was very alert. I’ve been masking pretty heavily for the past 19 years, molding the best I could to society’s standard of ‘normal.’
It’s harder than you’d think.
I felt like there was a handbook to life that I missed out on. I just didn’t get the memo and I was the only girl bare feet while everyone else was in stilettos. I just didn’t feel like I fit in.
But I tried. I tried, and I tried, and I tried.
- I tried to wear makeup before I was ready because girls teased me about it.
- I tried to dress the same as my friends or people on tv (even though I hated it).
- I tried to listen to the same music as everyone else and watch the same movies.
- I tried to talk to everyone and smile and hug and carry on like I was sooo happy.
Don’t get me wrong, I haven’t always been a miserable wreck. I am happy, just not every day. I’ve got a great family, a great dog, and some great friends.
But I felt like I was kind of living someone else’s life. In case you don’t know this *sarcasm* everyone has different tastes in music, tv, clothes, makeup, everything. That’s what makes the world an interesting place.
But my tastes in all of those things changed depending on who I was with. I chameleoned to my surroundings because I thought that was the only way I could fit in. No one could possibly love me just for who I was.
And the problem with all of this masking is that you start to lose who you are. It disappears. You don’t know what kind of music you like. You don’t know what kind of clothes you like, or what movies you want to watch.
You only know what music you like when you’re with Sally: the exact same music she likes.
And you only know what movies to watch when you’re with Mary: whatever she wants to watch.
But what about when you’re at home? Who are you? If you have no one telling you what to watch or wear or eat, how are you supposed to know?
I lost touch with who I was, I couldn’t prioritize what I needed over what other people wanted. It’s fine to cater to your friends, but there needs to be a give and a take. Meaning you need to take something, they need to give you something sometimes too.
Being a chronic people-pleaser is absolutely exhausting.
It made me draw away into my own world, I had a whole life inside my head. Which, mind you, was much more interesting than the one I was actually living. How am I supposed to be around people all the time? I couldn’t take it. I would hide in my brain and try to blot it all out.
But that can also be disturbing after a while. When you rather be in your head instead of present in your own life, you start feeling guilty, lonely, and just exhausted.
So, after 18 years, I talked to my parents about it. It’s not like I was intentionally keeping it from them, but autistics are known to have issues expressing emotions 😅.
Starting the process
We started looking into it and we found ADHD. Yippee! My problems were solved, I wasn’t crazy or lazy, or dumb. All my questions were answered and this was it!
Yeah… I tend to sell my soul to things much too quickly.
Anyway, we looked into it and called our local hospital. Here in Canada, we have free healthcare (sort of) so that fortunately wasn’t an issue.
I had an initial consult on June 20 where I told the doctor what I was dealing with to the best of my knowledge and she sent me home with lots of papers and an appointment on September 24, with an assessment for ADHD on November 7.
Now in those 3ish months, I kept reading and watching videos doing the best that I could to understand my self-diagnosis. I felt so anxious, I wasn’t 100% comfortable with it. It just didn’t all match up. I still had questions, and I needed answers.
Now, I’m an observant person. I’d been kind of aware of some different mannerisms of a child I knew and I was curious if they might be autistic. So, I started researching autism in hopes that it might help them.
And down the rabbit hole I fell! I started learning about autism and Aspergers and how that presents in men and women, boys and girls.
There are a lot of similarities between ADHD and autism because of the executive dysfunction and anxiety associated with both disorders. So it can be a little hard to figure out which one you’re dealing with.
But as I learned more about autism, I thought, holy cow, this actually does answer all my questions. I had found it, I’d found my true tribe. It actually did make sense.
The realization was actually pretty fast. It’s amazing what just a little self-education can do. Of course, I’ve always been aware of autism, who hasn’t? But I never matched it up to myself because, well, like I said I don’t look autistic. That means baloney. No one looks autistic.
We have such a stereotyped view of autism that it hurts autistic people, diagnosed and undiagnosed alike. What is your stereotyped idea of autism? Mine was a little child screaming and kicking and not looking anyone in the eyes. I hate to admit it, but that’s the way it was. I was uneducated. I didn’t really give it any serious thought before I thought it applied to me.
This story is told again and again, and not just about autism. Why don’t they talk about this in schools? People need to be educated.
I can tell you one thing: learning about autism has made me a lot more conscious of the struggles of others. I have always found psychology fascinating, but now even more so. I’m learning about a lot of other neurodiversity, and I’m loving it. I’m learning to be more inclusive and not to judge others.
Wow, I ramble 🤦♀️😂.
Back to the actual diagnosis. When I went in on September 24, I told my psychologist that I now thought I was on the autism spectrum as opposed to ADHD. She was completely on board and started the autism assessment that day. And I did have one interview where she assessed me for ADHD but she decided that was not what I was dealing with and I agreed with her.
I was 18 so I was in the child and family wing. But in November, I turned 19 and would have to be moved to adult services and there is no one in our province that does autism assessments for adults. So it was really good that we started when we did and I am very grateful to the psychologist.
So we had 3 more appointments where she asked my mom and me a bunch of questions about how I was growing up.
What the ADOS assessment looked like for me
On November 7 I did the ADOS (autism diagnostic observation schedule) assessment. At my age, this is what that looked like:
- I was asked a lot of questions about what makes me happy/sad/fearful/angry and how I would describe those emotions
- I was asked about my relationships in the work environment and school (for me, I could only pull from my 6 months working at a daycare as I was homeschooled and now work from home)
- I looked through a picture book with no words and was asked to tell the story, which I struggled with immensely. I loved the pictures, but hated trying to make a story with them
- I was given 5 random objects from a bag and told to make a story with them. It’s fair to say my story absolutely sucked (I got a butterfly, sponge, glasses, and some other things I forget now)
- I was also asked to imagine the psychologist was an alien and I had to teach her how to brush her teeth. I had to explain and demonstrate, I found this incredibly uncomfortable 😂
That’s all I remember, the assessment lasted about an hour. I was very anxious and uncomfortable through the whole thing, but as I mentioned I’m quite the people pleaser so I did everything she asked me too. My mom was also watching through a two-way mirror; which I think is quite funny.
Getting the diagnosis
Then, I went back a week later with my mom and the psychologist summed up all the visits that we had. Then she gave me my official diagnosis of autism and anxiety.
For me, I had such mixed feelings. I was so happy to finally feel validated and have an answer for everything. But I was also very confused and exhausted.
It takes a lot of energy to reexamine your whole life through a new lens.
What happens now?
Now that I have my diagnosis, I’m working on unmasking and becoming happy with who I am and where I am in life right now. For years, I always expected I would somehow magically become an adult at 18 and be able to do everything everyone else my age could do. That’s just not the reality right now.
I had my life pretty well planned out. By 19, I was going to be living on my own, fully supporting myself with my online business, traveling, maybe even on my way to living in Taiwan. I wasn’t content with the possibility of not being able to do that.
I haven’t given up on those things. I still want to do all of them. But, I’m trying to become comfortable with the fact that I can’t do them right now, and that I might never be able to do all of them.
And that’s ok.
I’m trying to be happy day-to-day and just do the best I can.
I think that these last couple of years have really caught up to me. We lived in Ecuador for six years, and we moved back to Canada in 2014. Since then, we’ve moved 3 times. We’ve traveled quite a bit, and we’ve had some big renovations on our new house. And then trying to figure all of this out!
If I could bet, I’d say I’m going through autistic burnout. It’s exhausting. But, I’m becoming okay with the fact that I need time to recover and learn about myself.
This is a difficult time, but I’m actually starting to see that things can get better. And that feels pretty great.
So, what I’m hoping to do with this blog is to educate people about autism. I’m hoping it will help at least a few people feel understood and help allies to understand us autsies a little better. I know it will help me to figure everything out.
My advice to anyone who thinks that they or their child may be on the spectrum is to get an assessment as soon as possible. While I am still fairly young, it would have been so much easier for me growing up if I had known earlier. If it is left undiagnosed, the anxiety can get worse and lead to depression or worse. So it is always best to get help as early as possible.
That’s it 🙂
I guess that’s it. If you have any questions, or any topics you would like me to cover please let me know in the comments! I want to hear your thoughts.
Love from the autsiverse!