In December 2018, I was diagnosed with autism spectrum disorder after several months of researching the condition and going over issues throughout my life that could be considered signs of the disorder. I’ve been confused by a lot of the health issues I’ve experienced over the last several years and why I’ve had to struggle so hard to get my health where it needs to be in spite of trying to do all the right things. However, autism was never on my radar as a condition that could be linked to these issues. I’m so thankful I’ve found this huge piece to my health puzzle.
At the beginning of August in 2018, someone who had read some of my blog posts sent me a message. She told me that many of the conditions I discussed on my blog show up quite a bit in the autism community. She stated that I never mentioned autism on my site. I responded and told her that I’m not very familiar with autism and didn’t know of anyone in my family who had been diagnosed with the disorder. I thanked her for getting in touch with me and told her I would research autism given the information she provided. I’m very thankful for this person contacting me about autism because I otherwise would have never considered it. I certainly was not getting answers elsewhere. I could never get any helpful answers from the support groups when I tried to ask about root causes or conditions that could be connected to the issues I was experiencing.
When I first began researching autism by reading about it on sites like WebMD, Wikipedia, Autism Speaks, and others, I thought some of the things resonated. I was a shy child who had problems socializing and making friends. I don’t make eye contact when I’m speaking to others, at least not very well. I communicate much better through writing than speaking, and many times at work I’ll hide behind e-mail messages rather than going to speak to someone directly. I also really hate talking on the phone. I don’t like calling someone I’m not used to speaking with, and I don’t like for people to call me when I’m already busy with another activity and don’t want to be interrupted. However, I could not, at that time at least, think of anything related to the other signs of autism like restricted interests, repetitive behaviors, or sensory processing issues. Many of the things listed on the sites I visited didn’t seem to apply to my life at all. I took the AQ (autism quotient) assessment a few times and never scored higher than the low 20’s. I’d have to score quite a bit higher to be considered a likely candidate for autism spectrum disorder. I dismissed autism and decided to stop researching it.
A short time later, something drew me back to researching autism. I ended up running across information that autism manifests differently in females. Some of the AQ assessment questions dealt with things like reading fiction and playing pretend. I love reading fiction, and I loved playing pretend as a child. Those answers, as well as the fact that I don’t consider myself to be fascinated by numbers and dates, actually brought down my AQ assessment score. I found out that the fascination with numbers and dates, as well as not liking fiction or playing pretend, are more associated with males on the spectrum. When I began looking more into autism and how it manifests in females, I found that females on the spectrum actually love fantasy and like to use it as a means of escape. This manifestation is actually very true for me. They are also more likely to engage in pretend play, which I did as a child. I found a site that listed a lot of manifestations of Asperger Syndrome, a previous diagnosis for mild autism, in females, and I found that a lot of those manifestations resonated. However, I still didn’t feel like I was autistic due to my low autism assessment scores, although I did find that I might have the “broad autism phenotype” from an assessment I took evaluating it and scored high enough on it. I figured at that point I had the “broad autism phenotype” and not actual autism. I decided to table research on it once again.
Around a couple of months later, I was browsing videos on YouTube and came across a female who was discussing her discovery that she was on the spectrum. I could identify with the issues that she has with her temper. Other issues, like taking expressions literally, didn’t resonate as much, but that particular one stuck because I have a hard time with my temper when I’m frustrated or overwhelmed. I get angry easily when I can’t figure out a problem, if something doesn’t work the way it should, if something just doesn’t make sense, or if I’ve misplaced something that I cannot find. Not long after, I found a video by Tony Attwood discussing Asperger Syndrome in females. There were a few slides where he listed manifestations of traits in some females, who I assumed were patients of his, with Asperger Syndrome. Some of those left my mouth hanging open because they sounded so much like me when I was younger! Some of them sound like me even now! However, there were still enough other things that didn’t sound like me, so I was still dismissing it in my mind. I’d never been diagnosed with any other mental or psychiatric illness, for starters. I also did well in school and was able to get and hold down a good job. However, I did find out later that one of my professors was a friend of the manager who hired me, and he had put in a good word for me because I had worked on a project for him in one of my classes. The professor wanted to let him know that one of his students who was shy was also a good programmer and could do the job. I think I remember someone saying that I didn’t interview well, so it very well could have been that professor’s word that got me the job. I bought my own home and have had no issues being independent and taking care of it, myself, my cat, and other things under my responsibility. While I still struggle a bit in social situations, I’ve come a long way since my childhood and teenage years. Interacting with others on the job, socializing with outgoing and talkative people, and being able to take advantage of written communication through e-mail, text messages, and printed documents have really helped me. I just didn’t think my struggles were bad enough to warrant seeking a diagnosis.
Perhaps one reason I kept going back to researching autism is that over time, I would recall things from my childhood that seemed to point to manifestations of autism. I remember watching one video where a girl was talking about how she flapped her hands. I kept thinking that I never flapped my hands, but then I remembered when I was very young that I would clap my hands together either on impulse or when I was excited, although it didn’t look like clapping one would do when applauding something. I haven’t done that for many years now. I also thought about how I would roll my head from side to side on my pillow whenever I wanted to get to sleep. I started doing this behavior when I was around three years old and continued it for quite a few years after. I even shook my head around while riding in the car. I’m not sure why I felt I had to do it there because I surely wasn’t going to fall asleep that way! I thought these might be considered repetitive behaviors. As an adult, I tend to pick at or rub my fingers/nails, rub my hands together, and fiddle with objects that happen to be nearby or just in my hands. I realized that my interest in cartoons when I was a preteen and teenager could be considered an obsessive restricted interest. I would watch the same shows and the same episodes whether I’d already seen them or not. I would draw the characters and write stories about them. I would play pretend with my dolls, turning them into the characters from the cartoons I watched. My grandmother even made clothes that matched what the characters wore for my dolls. Before my parents got cable, I asked my grandmother to watch Inspector Gadget and type up synopses of the episodes for me. I had her begging my parents to get cable! I remember getting up early in the morning to watch the cartoons and even ate breakfast by myself on school mornings so I wouldn’t miss an episode of one of the shows. I would get upset if I couldn’t watch them and even skipped some after-school events so I could watch them. There is even a photo of me and my sister with my great-grandmother, and in the photo, my eyes are turned toward the television because one of my shows was on. As an older teenager and adult, I’ve had strong interests in tennis, politics, and my health issues. I would think about those things often and do reading, research, or other activities related to these interests whenever I could. As for sensory processing issues, I remembered not liking “slimy” foods such as pudding when I was a child. Bananas and applesauce were hard for me too. These foods made me gag. It was several years before I learned to eat foods like these. I also get very uncomfortable in tight crowds. I feel trapped and claustrophobic. I also have a very hard time with cold intolerance. It could be that my thyroid issues and iron issues are contributing, but I believe that it could also be a sensory processing issue. I will be in a coat or under blankets when others are comfortable. I haven’t been in a cold swimming pool in quite a while because the last time, the cold water really got to me. I couldn’t stand being in the cold water or others splashing me with it. I also hate wind and cold air blowing on me.
Given what I was recalling and thinking could be manifestations of autism and my low assessment scores, and after getting some advice from someone I knew who was diagnosed with Asperger Syndrome several years ago, I finally decided to start creating a document containing all the health issues I have that I thought were related to autism, all the traits and behaviors I’ve manifested over the years that I thought might be autistic traits and behaviors, and anything else unusual that came to mind. I planned to take the completed document to my primary care doctor. I already had an upcoming appointment with her and thought I would discuss the question of whether or not I had autism with her. She ended up suggesting that I make an appointment with a psychologist or psychiatrist. She said that she could not refer me but would give me a list. The list was pretty long. I tried to get as much information as I could about the doctors she listed, without having to make a phone call, but could not find out much about their knowledge and expertise in diagnosing autism spectrum disorder. I finally just decided to search online for someone else and found a website with very promising information. I sent a message to the office’s e-mail address and got back a response later that day. A few e-mails and a phone call later, I had an appointment booked during my Christmas vacation, which was just over a week later. I was thrilled to get an appointment set up so quickly and while I was already off of work.
The doctor with whom I made the appointment said the assessment would take about two hours and that I should bring someone with me who knew me well. I talked to my mom and asked her to accompany me. I figured she could give more insight into my childhood issues. The doctor also told me to take some online assessments at aspietests.org and send her the results. The tests were not very easy, and on a few of them, I scored lower than the average for non-autistic individuals. Higher scores point to a likely autism diagnosis. For me that seemed strange and just didn’t add up. When I sent her the results, I told her that I found the tests difficult and that I felt I had a hard time picking an accurate response for several of the questions. She said this sort of thing is common. I also sent her the information I provided to my primary care doctor. When we arrived at her office for the assessment, she told us that she would meet with me first, then meet with my mom, and then meet with me again to give me her conclusion. I tried my best to answer her questions honestly and to the best of my ability. I also referred to my document and later found out that she had not read what I had sent. She didn’t think she had received it. I decided to bring the printout I had taken to my primary care doctor just in case, and I gave it to her. She decided to read through it before speaking with my mother. She had been with me for quite a while, so when I went back out to the waiting area, I figured I had plenty of time to relax and do some reading. I was really surprised when the doctor came back a lot sooner than I expected. She called me back into her office, telling me that she found my document helpful. We both had a seat, and she told me that she thought I met the criteria for autism spectrum disorder, level one. She told me that my mom had a really hard time answering her questions, and she thought my mom might be on the spectrum as well. She gave me a list of resources about Asperger Syndrome, the diagnosis I would have received had I received an autism diagnosis prior to 2013. Today, Asperger Syndrome is not an official diagnosis. Some people may also call this diagnosis high-functioning autism. I brought up my confusion concerning the results on the assessments, and she told me about a patient who had come in to see her because someone else suggested he see a doctor. She said that he also scored very low on the assessments but ended up being very autistic. She said that some people just aren’t aware of how they’re behaving.
I believe, as a higher-functioning autistic female, that the signs were just missed in me when I was a child. I was a toddler when the DSM-III (the third edition of the Diagnostic and Statistical Manual of Mental Disorders) was released in 1980. This edition was the first one that contained distinct criteria for diagnosing autism. Asperger Syndrome wasn’t added to the DSM until 1994, and by that time I had “outgrown” many of the more obvious signs I was manifesting. I no longer shook my head or rolled it from side to side when trying to fall asleep. I no longer engaged in the “hand-clapping” I did as a very young child. I was still not very social, but I felt I was doing better than I had done in my late childhood and early teen years. I felt that my behaviors were just idiosyncratic childhood behaviors that I learned not to do or engage in as I got older. Also, at this time and when I was a young child, females generally didn’t get diagnosed with autism unless they exhibited severe manifestations. I remember my parents telling me that they mentioned my shyness and head shaking/rolling to the doctors, and they would just tell my parents that I would grow out of the behaviors and “come out of my shell”, and while that ended up being (mostly) true, it seems that an underlying cause of these issues was missed. Autism just wasn’t on the radar of the doctors who saw me, at least not in my case.
I believe the autism diagnosis provides a big piece to my health puzzle. It turns out autism is tied to and increases the risk for many health conditions, including the conditions I have or have had, like food allergies, IgA deficiency, eosinophilia, hypothyroidism, copper/zinc imbalance, migraines, and urinary incontinence. In high school, I thought I had a weak bladder because I had trouble “holding it” while in class and waiting for the bell to ring so that I could make a trip to the bathroom. I was afraid to ask the teacher, so I would just wait instead of asking to be excused. Fortunately, this issue is no longer a problem for me. Autism may have also played a part in my issues with iron. I’m not sure if having deficiencies in carrier proteins might be the driving force behind my dietary imbalance issues, but this explanation seems as good as any I’ve seen to this point. I’m hoping I can find a way to pursue testing to see if this might truly be an issue for me. I have a health issue right now that really affects my day-to-day living that I wonder might be a sensory processing issue. It’s been a noticeable problem since May 2018, but I didn’t consider the possibility it could be related to sensory processing until just recently. I discussed the issue with the doctor who diagnosed me with autism spectrum disorder. I get symptoms of motion sickness when exposed to visual movement, like scrolling on a computer/phone/tablet display, the movement of my hand when wiping down a countertop, the flickering of fluorescent lighting, the movement of ceiling fans, and just being exposed to ordinary movements for extended periods of time, like being around crowds of people. Certain head movements also bring on symptoms. Sometimes I believe the exposures to visual motion bring on intense feelings of fear, anxiety, and panic. I’ve had VNG testing for inner ear issues done, and that came back negative. Also, my eye doctor found no issues when he checked my vision. I had an MRI scan, with and without contrast, come back normal. I’m now seeing a neurologist about this issue, and she’s currently treating it as migraine-associated vertigo. She believes the headaches I had in my childhood were migraine headaches and that the issues I’m having now are a different manifestation of migraines. I’m taking extra supplements at her suggestion, and while in some ways they’ve helped me to feel better, I still get motion sickness symptoms from visual movement. I found out through blood work that my endocrinologist had done that my TSH never came back down under 2, so he decided to have me take two extra levothyroxine tablets a week. This increase has helped me have more energy throughout the day. Before the increase, I would feel absolutely drained after enough exposures to visual motion. When I see the neurologist again, I plan to tell her about my autism diagnosis and ask about the possibility that my issues with visual motion might be due to sensory processing disorder. Perhaps she may consider another treatment that may help. It’s possible that migraine medications might not be the correct approach if it’s a sensory processing issue. I’m really hoping this issue can be treated because it really makes doing ordinary things quite difficult.
My advice to others researching autism and trying to determine whether or not they have it and if it would be worthwhile to seek a diagnosis is to give yourself plenty of time to remember and think of anything that may be linked to social communication issues, repetitive behaviors, restricted interests, and sensory processing issues. Also try to consider any other unusual things about your health or behavior. If you’re able, try to research and see if those issues are related or linked to autism at all. Even if you can’t find anything, it wouldn’t hurt to make note of them in case the doctor you see has any ideas. Many autism sites and videos will mention certain traits that you may or may not have had. The assessments may not ask questions that apply to the issues you’ve experienced. Keep a document with all the information you’ve gathered and remembered. If you know anyone personally who’s been diagnosed or who you trust to give good advice, talk to that person. See your primary care doctor to see if he or she feels that you should speak to someone who could diagnose you. Find a doctor who specializes in diagnosing autism spectrum disorder if your primary care doctor isn’t able to refer you. I wanted to find one who I felt would give the proper diagnosis to an adult female and was very glad to find one online. I researched her before making the appointment and saw that she had worked with students at a nearby major university. That made me more confident about seeing her. I was thankful that it just took one session with her for a diagnosis and that I was able to get a session with her just a little over a week after my initial contact with her. Also, make sure to show your completed document to the doctors you see for evaluation and diagnosis. That way, you can tell your doctors everything you’ve discovered without having to worry about forgetting anything.
I’m so thankful I have this diagnosis and am hoping it will help me to sort through at least some of my current health issues and get them properly treated. I feel that it explains a lot about the way that I am and the struggles I’ve had throughout my life so far. I’m very thankful that someone who came to my blog and read some of the posts took time to let me know about this connection. I’m hoping that through sharing what I’ve experienced that others who may be questioning their health and other issues may also be able to find the answers that they’re seeking.
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