I found a fellow blogger’s post today (Autism does not reside in a medical report— by Sonia Boue) which confirmed my suspicions that self-diagnosis is still as controversial as I had been assuming. Sonia writes that it is “genuinely upsetting and frustrating for my fellow autistics” when either a neurotypical person or another Autistic person with an “official” diagnosis shuns them for self diagnosing. Sonia supports self-diagnosis and reports several reasons why someone might choose not to get an “official” diagnosis like medical expenses, distrust in the medical field in regard to getting a correct and proper diagnosis (especially females or those who are higher functioning), or they are not yet fully aware of the problems they are dealing with and haven’t come to the level of understanding that might prompt them to seek a diagnosis. Sonia goes on to say regardless of whether a diagnosis is given by a medical professional or not Autism is a life-long neurological condition, and having either type of diagnosis doesn’t change that it effects everyone with it the same way in varying degrees. There will always be people who try to take advantage of the system by faking a diagnosis, but Sonia claims it can be faked officially or unofficially, and it undermines the struggle of late diagnosed adults with Autism who self-diagnose after they have learned to cope with their disability. Furthermore, it is just plain rude and disrespectful to question someone’s childhood or to compare struggles because of differences in symptoms or abilities. That was just a short abstract of the article based on my own understanding of it, but it highlighted a lot of the issues that are central to the discussion. It got me thinking about my own diagnosis and made me realize that others may be struggling with the same issues I was dealing with not long ago.
I am a self-diagnosed Autistic. There was a point where I struggled with the decision to seek a formal diagnosis or to save myself the trouble of going through that process. I know without a doubt I have Autism. It is far too much of a coincidence to explain nearly every aspect of my life from being afraid to change my daily routine, to itchy tags on my shirt, to being afraid of small talk or crowded rooms and much more. The main reason for pursuing an official diagnosis at the time was only to prove it to people who doubted me because I didn’t fit their stereotypical description of a person with Autism. I wanted to validate my Autism not for myself but for everyone else, but I wasn’t sure where to start. I decided to wait and see what I could find out myself first. Six months ticked by, and I had dove head-first into researching all sorts of symptoms, traits, abilities, and disabilities of people on the spectrum along with where to get an “official” diagnosis. I learned Autism was a spectrum disorder; it had recently been mashed together in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders– Fifth Edition) from a list of several possible Autism-like disorders to an umbrella term Autism Spectrum Disorder or ASD. I would have been given an Asperger’s Syndrome diagnosis, but now under the new ASD diagnosis I was just one part of the whole spectrum. It seemed like for each new piece of information I learned I was finding I didn’t know four other things I should have known. I needed some more help, and who better to teach me about Autism than Temple Grandin and her mother?
There was a large Autism convention coming up near where I lived; I bought those tickets ASAP! I packed my notebooks, pencils, squishy stress ball, and I headed out. I wasn’t even in the door to the conference seating area that my Autism snuck up on me. I spelled my own name wrong at the sign-in table. Minor setback aside I made it to my seat and waited with sweaty hands and bouncing legs for Temple to take the stage. I hadn’t taken that many notes since I was studying for my Bachelor’s Degree. After the lecture there was a break in order to grab lunch and buy merchandise on display at the make-shift gift shop. I wanted to read Temple’s books because even though I took notes I couldn’t keep up with all the wonderful information I was learning, and I needed to see it to retain it. There is a saying that “nothing in life worth having comes easily.” I was one “doorway of opportunity” away from meeting the woman who beat out Xena: Warrior Princess as my hero and role model, but in order to get to her I had to face every Autistic person’s worst nightmare– a very overcrowded, loud room full of people who were all making small talk and bumping into each other trying to get to the book table. It was a social mine field in the middle of sensory overload, but I wanted that book. I stared into the room and watched the ebb and flow of the crowd and found a small path where I could sneak through to the table. I took a deep breath and went for it. I don’t remember much besides panic and wanting to get out of there, but I managed to get the book and pay for it before making a break for the exit. I had my book, and it felt good in my hands. The cover was smooth and cool to the touch with slightly raised paisley designs and letters across the front. The line to meet Temple was out the door, but the hallway was quiet and calm so I hopped in. The closer I got to being back in the room and the closer I got to Temple the more my anxiety was peaking. I was praying I just remembered my name this time.
It was finally my turn. I wanted to blurt out everything I could all at once, but my mouth wasn’t working. I was feeling everything all at once as if I was in the middle of a hurricane of emotion, but then she asked me what I did. I answered with the same script I had been using since I got my job working with a non-profit medical equipment company a year and a half before. It was easy conversation because I had said the same thing four dozen times before. I said I had been recently self-diagnosed with Asperger’s Syndrome, and before I could even figure out how to ask if I needed a formal diagnosis, she was asking her own questions. The conclusion I came to was that being self-diagnosed served its intended purpose to provide me with answers about why my brain worked the way it did, and why I had social and sensory problems. I had learned how to function and to cope in my own way, and I was pretty successful by any standard. She had said an “official diagnosis” was just going to label me for the rest of my life that I was different. I added that much of the world thought that meant inadequate too.
There are reasons to pursue a diagnosis formally– resources that require an “official diagnosis” whether they are financial, informational, or assistance with daily living activities. Another reason might be early intervention. A child who is clearly showing signs of Autism can be treated with a diagnosis even before they are able to make that discovery for themselves. A child might benefit from a having the diagnosis in order to be placed in proper classrooms with skill levels appropriate for their intelligence rather than by age/grade level. One student might be low scoring on math and excel in English, but without a diagnosis they are herded into common classrooms and expected to perform within the average range of the other neurotypical students. The parents of the child may feel more comfortable knowing what is plaguing their child to troubled socially or acting out with strange behavior by getting a professional opinion.
These are all legitimate reasons, and there are probably a dozen more, however, a formal diagnosis doesn’t mean the person getting that diagnosis is doomed to be non-verbal for life or be dependent on others for everything. These kids will adapt to communicate in their own way and now more than ever it is possible with the technology accessible to everyone like tablets and laptops. They will have to overcome larger obstacles, but they are not impossible obstacles to get past. Those higher on the spectrum who receive a diagnosis aren’t less capable than a neurotypical person, they just do things in ways that are different that might not make logical sense to someone not on the spectrum. As a self-diagnosed individual I have no prejudice toward someone with a formal diagnosis because their struggle at the end of the day is not unlike my own. We both need acceptance, and we both have a unique way of processing the world. That being said, I would hope they extend the same courtesy to me for the opposite reasons.
I have personally found that the people who struggle with my self-diagnosis are people who have a certain perception of me or who haven’t had much interaction with Autism in general. The thing I hear the most is that I don’t look like I have Autism. What does that look like exactly? Can you see how my brain processes things? What do you know about Autism? Are you well informed or are you drawing on old stereotypes that aren’t true for many of us with an ASD? I had a woman tell me once that her daughter has Asperger’s Syndrome, and I said I did too. She pointed out things I could do that her daughter couldn’t and invalidated my Autism because it wasn’t like her daughter’s Autism. I don’t think she did it on purpose, but I will never know because I don’t understand body language or expressions most of the time. I guess it couldn’t be because I have Autism–could it? (sarcasm added) The point is just because I can make some eye contact or because I can hold a fairly decent conversation that isn’t entirely scripted doesn’t mean I don’t struggle invisibly and in private. I told my wife once that I questioned if I even had Autism because I was getting so many people who couldn’t “see” it. She just laughed and said, “you are definitely Autistic. They haven’t lived with you for as long as I have.” That answered my question. They didn’t see it because they weren’t around when I was struggling and having a hard time doing tasks that other people would find simple. They only saw me when I was able to focus and “muscle” my way through the conversation. If I had a piece of paper to make my Autism “official” would that have made a difference to those people?
There are reasons not to seek out an “official” diagnosis as well as there are reasons to get one. I didn’t need one because it is redundant for me to have someone tell me what I already know. If you fell off your bike and your arm hurts and is twisted into an unnatural position, Do you really need a doctor to tell you it is broken? It is nice to have that reassurance or the help to fix it, but the actual diagnosis isn’t exactly dependent on a doctor’s opinion. I didn’t necessarily need the resources which required an “official” diagnosis although there are some that I wish I could have applied for as it would have helped to skip a couple steps in the process like scholarships that were for students with Autism. I was able to find information on my own with help from search engines, books from the library, and other public access to journals or published research. It just seemed like the monetary costs and the time I would need to devote to finding a licensed psychologist, filling out paperwork, setting up appointments, and taking the number of tests needed was just too much hassle considering what I would be gaining which was not much that I couldn’t do on my own with a little direction and support. I don’t think self-diagnosis is right for everyone. There are going to be cases which require more support and guidance than a single person could do using the Internet, but for some having a self-diagnosis is the way to go.
Either way you chose to go in getting a diagnosis is correct as long as it works for you. There are even some people who may recognize they are different, but chose not to find out why that is because they are managing fine regardless of finding the root cause. The big picture here is that everyone whether they are on the spectrum or not have differences in some way. It doesn’t matter what label you have, if you have a disorder or not, or get a diagnosis from a professional or through self study. At the end of the day everyone is a little different in their own way– just be kind to one another.
If you still aren’t convinced or would like to do further reading I suggest The Complete Guide to Asperger’s Syndrome by Tony Attwood. The first two chapters are all about the introduction to Asperger’s Syndrome and several roads to diagnosis including some of the things I discussed above. It is a simple yet it provides a wealth of information that is crucial to understanding the journey of many people of all ages with AS.