Chapter 8, Coping Without a Diagnosis. My name is Sylvie. I'm 33. I just got diagnosed officially last year, and I'm currently in a transition point between jobs. The very first time I noticed that something was different about me was when I was about 18 months old. I started showing signs of extreme sensory sensitivity.

There is a light that flickered in the nursery, and I did not like that. I remember reacting very strongly to almost everything. Escalators terrified me. Loud noises and flashing lights upset me. I was very sensitive to smells, and large crowds made me uncomfortable. Changes in routine really upset me, so many of the very common things.

I had a tough time in kindergarten. I don't remember a whole lot, and many of the accounts that I do know are told to me second hand, but I did have a tough time. Apparently, I got into physical altercations with kids because they would get too close, I would get upset, and then hit or push them away. Elementary school continued to be a struggle.

I pretty much had to longish term friends, and they were also picked on. I don't know if it was so painful that my brain is blocking it out or why I don't really remember. I just know that from very early on, I did not feel like I belonged. I was nice to everyone. I treated everyone the same. I tried to be respectful of others, but that didn't really seem to matter. It felt like none of the other kids I went to school with had the same social difficulties that I had.

I remember a kid in my class in third grade told me that I was naive, which is apparently quite common for people on the spectrum. At the time, I interpreted the comment as criticism, then later realized they were trying to help. This person later became a friend in high school, so it was a lot of misreading social cues, often because I thought people were coming at me with bad intentions when that wasn't necessarily the case.

Another example was when I had left my coat on the playground, and another kid in my class picked it up and was bringing it over to me. I got very upset because I thought they were going to steal it or do something bad with it. I think I had tons of sensory issues I was unaware of at the time, also, so it appeared to just be tantrums to my parents.

But really, it was just that I didn't know how to communicate how I was feeling or what was wrong. Because of those social engagement issues I had, I kind of made an association in my head that I wasn't very smart. In third grade, I had a hard time learning multiplication. I tried everything from books to tapes to flashcards, all sorts of things.

I finally hit a point where I was able to get one on one testing in the library with the school psychologist, and the testing showed I was actually pretty smart. Surprisingly, it was mostly a mental thing. I didn't think I was smart because of all the social struggles.

And as a result, I didn't think I was smart in the classroom. I ended up actually being placed into an accelerated program. That made a really big impact on my life because I didn't have a lot of confidence in myself, so it was a source of something to feel good about.

Middle school and high school. Moving on to middle school, there was a school that I really wanted to go to that was known for its art program. It was a magnet school, and I wasn't in the zone for that school, so they put me on a wait list. I was very far down the line, so I didn't get to go. The middle school I did end up going to was awful.

I saw fights daily. There was one day in sixth grade where a seventh grade gang called in a bomb threat. We were outside the front lawn for two hours that day. I did not feel safe at that school. The kids were mean to me. They made me cry, and then that obviously made things worse.

I found people that I thought were my friends, but they ended up turning on me and making fun of me behind my back. That was really hurtful. I ended up transferring schools for my seventh grade year. I went to a private school, and that was a lot better. The kids there were much nicer, and I was able to find a group of friends there, but there were things I definitely still had difficulty with

I stayed in that school until the end of eighth grade when I moved on to high school. In high school, I had a decent sized group of friends. We hung out on the weekends and things like that. We got along, but I still never really felt like I fit in. We were all the same age and went to the same school, but we really didn't have a whole lot of the same interests.

I just kind of felt a little bit out of place. We were connected, but at the same time, we weren't, if that makes sense. I mostly lost touch with them when we all went off to different colleges.

College. I started college at a really large university, which, in hindsight, was probably not the best decision. I had some classes where there were hundreds of students in a single class. It was hard to get the one on one help that you needed, especially if you had difficulty with auditory processing. Additionally, I started having issues with mental health, which only added to the difficulty I was having.

I ended up transferring after a year, and it was much better going to a smaller school. It was less overwhelming, and I definitely felt that academically I got way more support. I went through several different majors in college. I guess I never really thought seriously about what I wanted to be when I grew up and what I wanted to do with my life.

I started out as an art major because I enjoyed art, but being graded for it made it not so enjoyable. It was very different than the hobby that I loved. I also realized that for a career, it probably wasn't all that feasible. I ended up switching to psychology, and then I transitioned back into the art world with graphic design before switching back to psychology.

I was attracted to psychology after taking a class in high school, and I loved it. I think also because I had difficulties understanding and reading people, I was drawn to it because I thought it may help things make more sense. I'm definitely glad I studied it because I liked learning about the brain, different disorders, and that thing.

I ultimately don't know if it helped things make more sense for me, but I graduated with a psychology degree, nonetheless. It was 2008 when I graduated, so the economy was awful at the time, and job searching was very overwhelming and discouraging.

The majority of job descriptions I read sounded awful or were overwhelming with too many different tasks and too many different responsibilities. It seemed like every single job they were looking for would be very exclusive of most autistic people, things like great time management, being extremely organized, and strong ability to multitask.

They all seem to go against my strengths. Like so many people on the spectrum, I ended up being underemployed because that was the only thing I could fit into. I ended up in manufacturing and warehouse type work, and I've spent the majority of my adult working time in that kind of field.

Getting diagnosed. After college, I had several people start mentioning Asperger's to me, even my own family. I was previously diagnosed with nonverbal learning disorder when I was younger and then depression, sensory integration disorder, auditory processing disorder, and ADHD. So basically, everything except autism.

It was all the separate pieces, but not the whole picture, so those conversations definitely put some thoughts in my mind. I was in a job. It was customer service, and I was filling in for somebody. And I didn't really feel like I was prepared enough for it. I feel like for some of the people on the spectrum, me included, it can take a little bit longer to pick up certain things, and extra training is sometimes needed.

I was completely lost. I walked into so many emails about things that I didn't really know much about, and I just shut down. My manager was out that day, and everyone else seemed too busy or unable to help. I just could not function on the job. I don't even remember what I did, but it wasn't much.

I ended up getting fired shortly after that. The whole experience was very difficult for me. I had moved to a new town an hour away, gotten a whole new apartment just for me to lose my job. I hadn't been there for very long, so I didn't really have connections. I was definitely in a "now what?" phase.

I felt like getting an official diagnosis would give me some protection and support if I got myself into a situation where I was overwhelmed and shut down, or at least I wouldn't get fired over it. I'm a very hard worker, and I've been told that I'm a great employee. I've never been fired from anything else. I never wanted that to happen again, so I attempted a Diagnosis

I sent in a ton of information about myself, and they met with me for one hour. I feel like the person I spoke to was not very well trained on how to recognize autism spectrum disorder, especially in women. They ended up not diagnosing me, and I think that being both an adult and a woman who presents autism differently than most went into play quite a bit.

I didn't want to give up on getting diagnosed, but it did take me a few years before I sought a diagnosis again because I was afraid that I would spend a lot of money all over again just to be told the same thing. Over time, I got a referral from a friend for somebody who was very good at diagnosing adults and specifically women.

I went in, and it was much more thorough than a single hour. I was so happy when I got the diagnosis, I actually cried. I knew I was on the spectrum. I had done so much research. I had never read anything that made so much sense about my life. It kind of brought everything together. It was the one thing that explained everything that I dealt with growing up and to this day.

My life now. I'm currently in a transition between jobs. I was last in a burnout position, and it was kind of an unfortunate position. I was there for 2 and 1/2 months, and then I was furloughed for a while. I came back, but there were a lot of changes, and it all became too much. I decided to find something else because I was just so exhausted and couldn't do anything with my free time.

I reached out to some fellow autistics in my area and asked if they knew any good connections based on what I would be good at and the type of work that I can handle with a flexible schedule. I'm currently looking at a place that works with adults who have intellectual and developmental disabilities as a direct support, and I think that something like that would be very good for me.

I'm also looking at a peer support specialist program that combines a lot of my interests into one while helping people with mental health issues. We'll see if either one of them takes off. My advice to others would be to never give up It will probably be a long and difficult journey, but it will be worth it in the end.

Don't be afraid to reach out to other people for help. I've been there and tried to deal with everything on my own. It's not a route that I would recommend going. We all need some support and assistance sometimes.

Life is difficult for everyone, especially if you're on the spectrum. There is absolutely nothing wrong with saying, I'm having a really hard time right now. I could really use some help with this. It's actually more of a sign of strength than it is of weakness.