At the end of April, I underwent 10 hours (over a three day period) of neuropsychological testing and interviewing. Obviously, to go through the data of 10 hours of testing takes a while, so I had to wait until June 5th to get my results. Only a very small part of the results were actually a surprise, and none of it was bad news.
I was officially diagnosed on the autism spectrum! Yes, this is good news for me, and validates the “I think my brain works differently than the average population” feeling I’ve had my entire life. My official diagnosis is “autism spectrum disorder, level 1, without significant language or intellectual impairment” (because they like to make diagnosis names as long as possible). I’ll get more into the details of this diagnosis below.
I was also given a secondary diagnosis of “other specified depressive disorder,” which seems to essentially just be a moderate and persistent depression that doesn’t fit the diagnostic criteria for other depressive disorders; this wasn’t a surprise at all because I have had depression since I was in late elementary school (maybe about 10 years old), and have been treated off and on for years.
The only surprise in my diagnosis meeting was that I do not actually have attention deficit hyperactivity disorder (ADHD), like I was diagnosed with at age 14. ADHD is a common misdiagnosis in people with autism spectrum disorder (ASD) because there is a lot of overlap in symptom presentation, however the root cause of the symptoms is different. Getting easily distracted and fidgeting a lot, some of the main symptoms of ADHD, can actually be attributed to the sensory problems associated with ASD.
More About ASD – Generally
In 2013, the DSM (the book that lays out all the diagnostic criteria for all recognized and “official” mental health conditions) was updated to version 5. In the DSM-5, autism, Asperger’s syndrome, and some other similar conditions were all grouped into “autism spectrum disorder.” Autism spectrum disorder is further broken into three levels, with level 3 being “requiring very substantial support,” level 2 being “requiring substantial support,” and level 1 “requiring support.”
People that were previously diagnosed with Asperger’s Syndrome, will likely be classified as ASD level 1 under the DSM-5 criteria. Some of them may be given a different classification, but the majority will have the ASD-1 classification.
While some people still use the terms “high functioning” and “low functioning” to describe people with ASD, these terms are generally disliked amongst the autistic population. These terms are not adequate nor accurate when describing autistic populations, and tend to reduce autistic people to a “less than human” level. The term “high functioning” is misleading in that it does not take into account the support that level 1 autistic people still require, while simultaneously degrading them and putting them below neurotypical people. The term “low functioning” is an insulting term, used to describe levels 2 and 3, used to describe the autistic people that are far from societies “normal” range of behaviors; just because someone does not speak (a common thing in autistic people) does not mean that the rest of their brain and body does not work. Unfortunately, these labels are still very frequently used. Please, refrain from using these labels.
I saw a fantastic quote on Pinterest: “If you’ve met one person with autism, you’ve met one person with autism.” (If you know the source of the quote, please comment on this post so I can give proper credit.) That is very true! While we may have similar symptoms, our presentation can be completely different! I follow another ASD-1 (I don’t think that’s officially how you write it, but it’s faster than typing “level 1” after it each time) person on Instagram, and she has different symptoms and presentation than I do – she struggles with sarcasm and picking up on emotions and she is extremely blunt, whereas I would have not survived my family if I didn’t learn sarcasm (haha) and I spent a lot of time studying people so I do okay picking up on most emotions and do my best not to be as blunt.
Also, women and girls on the spectrum present differently than men and boys that are on the spectrum. Many women go undiagnosed because their “odd” behaviors are more socially acceptable for women: being “shy” and quiet in social situations, being introverted, organizing toys, having collections, staying clean and getting upset when they are dirty (this can be a sensory thing), etc. These same behaviors in men, in our society, are viewed as “odd” and are therefore more likely to be evaluated. If you research autism, you should also specifically research “autism in girls” to get a more complete picture of what autism spectrum disorder can look like!
My Autism – Main Symptoms
As I said earlier, my diagnosis includes “without significant language or intellectual impairment.” During my evaluations, there were many tests that measured intellectual ability and language ability, and my scores were extremely high; extremely high for the general population, not just among the autistic population. I have always been above average in intelligence (I write about it in this blog post), and the language skills scores during my evaluation were similar to all of my standardized testing growing up. Thankfully, my language and intellectual abilities have significantly minimized the impact my struggles have had on my life as a whole. Despite that, however, I definitely have significant symptoms.
(Information in the below list is from North Shore Pediatric Therapy; annotated with personal notes.)
- Social Impairments: Autistic individuals may have difficulty relating to others and developing relationships. They may prefer to be alone and sometimes act as if they don’t realize the presence of other people. They may also interact with others in socially inappropriate ways such as touching their ears, licking, or asking repetitive questions. Some individuals may not be able to read others’ emotions or they may display socially inappropriate emotions (e.g., laughing when someone gets hurt). Typically, autistic children have difficulty playing appropriately, which is important to developing social skills needed for adolescence and adulthood. (NSPT)
- I have difficulty relating to others and developing relationships
- Socially inappropriate ways of acting with people: mainly being overly nosey and not understanding how to properly carry on conversations (acceptable topics, acceptable additions, proper conversation flow, etc)
- Socially inappropriate emotions: this depends on the situation, now that I’m an adult I’ve learned a lot more about what is and isn’t socially acceptable; though, in foreign situations, I can definitely be way off
- Restrictive, Repetitive, and Stereotypical Behavioral Patterns, Interests, and Activities: Autistic [people] may engage in self-stimulatory behavior like repetitive body movements (e.g., body rocking, object twirling, light reflection, and hand flapping). Autistic individuals also may be preoccupied with specific activities or objects and may engage in activity sequences that are not functional. (NSPT)
- Stimming: rocking when really upset and crying, fiddling with my fingers, tapping my toes/feet, biting my nails, picking at my eyebrows/skin, biting the inside of my lips, etc
- As a child, I would dance on my tippy toes when excited, or otherwise wiggle around. I still do to some extent, usually with “Wallace hands” (from Wallace and Gromit).
- Sensory Processing Difficulties: Autistic individuals may have difficulty responding to sensations. For example, bright lights, loud sounds, or certain smells may cause distress. They also may experience pain or discomfort when touched or exposed to specific textures. Some individuals may also have difficulty with fine and gross motor skills. For example, they may have difficulty holding a pencil or their body movements may seem awkward or clumsy. (NSPT)
- THIS IS A HUGE ONE FOR ME! My sensory difficulties probably cause me the most problems in my daily life, and can completely derail an otherwise pleasant day.
- Sounds: “eating” sounds (slurping, burping, chewing, smacking, squelching, etc – oddly enough, crunching is usually okay if it’s not too fast), shuffling, dry skin on fabric or more dry skin, ceramic on ceramic, metal on ceramic, metal on metal, pencil tapping and pen clicking, analog clocks ticking, etc
- Loud Sounds: these usually need to be unexpected; though, any sustained loud sounds will get to me. If there is too much noise, in general, it becomes loud enough to completely overwhelm me
- Visual: bright lights, flashing lights, harsh contrast, etc
- Smells: perfume and incense are my two biggest problems. Strong smells will bother me and overload me sensorally; they will also trigger my migraines
- Physical Sensation: I do not like light touches, they’re tickly and feel awful; Other problems can include clothing, hair, what I’m sitting on, etc.
- Clumsy: This was a big problem for me until I started weekly Pilates, it took about six months of two sessions a week to get to a point where I am no longer “clumsy” on a massively general level. When I’m tired, however, all bets are off and I will drop things and trip and go back to how horribly clumsy I used to be.
- Difficulty Responding to Environmental Change: A very common characteristic in individuals with autism is their insistence that their environment and routines remain the same. For example, using a different door to exit the school may cause distress. Autistic individuals may also be attached to certain objects and will have difficulty when those objects are removed. They may require the use of specific objects or locations for engaging in certain activities. For example, a child may need to use the same cup from which to drink, every day. (NSPT)
- THIS ONE IS HUGE FOR ME! I hate having things changed in my environment! If stuff is supposed to go somewhere, it had better go there, or it causes me a lot of distress.
- Routine: the order I shower in, the order I get ready for bed, the order I get ready in the morning, sleepy time routine, etc.
- Environment: how the sheets must be (or I literally cannot sleep), where objects go around the house, where stuff goes on top of my dresser, how the counter in the bathroom is organized so I remember to do everything, etc.
Most of these symptoms are more obvious at home, because I have learned that they are not “socially acceptable” behaviors, and try to suppress them in public. However, if I overload, I will retreat into my head and have an extremely difficult time even socializing abnormally (forget “normally”). Thankfully, Dan can usually tell if I’m starting to overload and will help me find a way to get a quick break so I can still enjoy my time.
My Autism – Where to go Next
As I said earlier, I’m actually excited to receive this diagnosis – this diagnosis has been one of the most validating diagnoses I have ever received. My entire life, I have struggled with things that seemed to come naturally to the people around me, and I just didn’t know why. Getting this diagnosis is not only validating, but allows me to start more tailored therapies to help me better adjust to the neurotypical world we live in. I will be looking into individual and group therapies, equine therapy (because horses!), and self-guided exposure therapy (in the form of classes at the rec center) to help mitigate my horrible social anxiety. Hopefully, this will help me to better manage these symptoms and help me with my social skills!
Please do NOT support Autism Speaks or use them as a resource. The organization is extremely disliked by autistic people, for a lot of very important reasons. This post, from The Caffeinated Autistic, does a fantastic job explaining why Autism Speaks is an organization to be avoided: New Autism Speaks Masterpost. There are a plethora of fantastic sources, and the bottom of the post has a list of acceptable autism resources to use instead of AS. (The blue puzzle piece and “light it up blue” campaign are both Autism Speaks, please do not support these.)
If you are interested in learning more about ASD, here are some good resources to start with. There are many more, and I will try to update this list as I come across them!
- North Shore Pediatric Therapy has a good summary of ASD available (and that I use above) here: Autism Spectrum Disorders
- Autism Society – you can do a Google search for “Autism Society [your state]” to find the local chapter and see what they are doing in your area: here
- Autistic Self Advocacy Network (ASAN): here