I've been struggling to decide if I will someday pursue getting an official diagnosis of autism. At this point, I'm leaning towards no. This post shall go over the reasons swimming around in my brain for such a decision.
1. It's way too expensive. From what I've seen, it costs around $2000-$3000 dollars.
At a place I know of in Dallas, base rate for a general evaluation for adults is $2500. That looks at various psychological things. And then autism is an add-on for $500. So that's $3000.
I have found only one therapist who does autism testing for adults in Fort Worth (where I live). Their website doesn't provide the fee for testing. But they do say that the therapist, who does the testing, has a $200 per hour fee. I guess I could talk really fast and get a better price that way.
The cost of a diagnosis is not out of our financial range. We would not have to sacrifice housing, medication, meals, electricity, etc.
But there are other fun things we could buy or do with $3000, such as a virtual reality set, Disney tickets, plane tickets to an international destination, more cat scratching towers.....
Counterargument: I don't have ANY decent counterarguments against using the money for travel adventures instead. But I do see some validity in supporting the career of someone who worked hard to become a psychologist or psychiatrist. Then maybe SHE can buy Disney tickets for her family.
2. If I seek a diagnosis, I feel I'm very much playing into the mindset of autism being pathological—a disease, disorder, etc.
Homosexuality is no longer in the DSM.
I would like autism to go down a similar path.
That's not to say autistic people don't need extra support. But a lot of that need is related to societal prejudices and rigid definitions of what kind of minds and behaviors are acceptable.
Being gay is not a pathology. It's not a disease or disorder. But gay people do need special support. And what does that support look like? Well, a big thing is society letting go of the notion that marriage must be only between people of the opposite gender.
Acceptance to the point of changing customs, laws, and expectations is a huge form of support.
I hope for a future where parents don't look out for red flags; then, in tears, rush their child to their pediatrician. Instead they chat casually at playgroup. Hey, my child is really into lining up her car toys, and she refuses to eat any food covered in sauce. I think she's autistic! And then another mom replies. Oh, that's so cute! My kid is autistic too!
And I know not all autism is easy, casual, or only slightly challenging.
A child might have dangerous stims such as banging their head against the wall or picking at their skin until it bleeds. They might have huge meltdowns. But maybe instead of getting a diagnosis and treatment for autism, they simply get help for those specific problems.
Autism does have many comorbidities—epilepsy, eating disorders, OCD, anxiety, depression, gastro-issues, sleep disorders.
But you know what else has comorbidities? Being an Ashkenazi Jew, But we don't go to a doctor to get diagnosed as Jewish.
Let's say the kid who lines up the cars begins to have huge meltdowns. The mother wouldn't go to a psychologist to get a diagnosis. She would already know her child is autistic, because A) she can read and do research on what being autistic entails B) She knows her child more than anyone.
So, she goes to the therapist not for a diagnosis but to seek out advice and help for her child.
I think we need to stop relying on professionals to tell us who we are and/or what we're feeling. Instead I think going to professionals should be more about getting help in working through our struggles.
Counterargument: The future I hope for may never happen or if it does happen, it will probably be decades from now. I think diagnosism is going to stay very relevant, unfortunately.
I have felt very invalidated through out my life—about my feelings, about my health problems, about my mental health issues, about my singing, my writing, interpersonal issues, etc. Being undiagnosed in a world where getting a diagnosis is an important prerequisite to getting understanding, compassion, and validation sometimes seems too hard for me to handle.
Counter-counter-argument: I WAS officially diagnosed with a DVT and the response I've gotten from most people about that seemed to be pretty much disinterest, indifference, and covert attempts at shaming. So......
3. Getting a diagnosis won't rid me of my imposter syndrome.
When I first started writing about autism in April, I imagined I might be the first person to see imposter syndrome as something that could happen with something like autism rather than a career-related situation.
It turns out I was very wrong. Imposter syndrome is a subject that is often mentioned in the autistic community.
And from what I've seen from autistic influencers who are professionally diagnosed, getting the diagnosis does not fully cure people of imposter syndrome. Even without hearing their personal experiences, though, I think I'd still have my doubts.
I don't have full faith in doctors and/or psychologists.
I think my imposter syndrome would go like this: Maybe I'm wrong. Maybe I'm not autistic. No! I am autistic. The psychologist said so! But...what if she's wrong? Or what if she's just made a career of giving people the labels they desire for themselves?
Counterargument: Even if my imposter syndrome isn't cured with a diagnosis, it might lessen it a bit. And even a small reduction in those feelings might be really nice.
Counter-counter argument: There's the chance that the psychologist says I'm NOT autistic which will greatly increase the imposter syndrome.
4. I hate appointments
I haven't gone to a hair appointment in about 17 years.
I went many years without going to the dentist. I finally started up again after my tooth broke. I did a year or two of being good about doing dental appointments. Then I quit again.
It took me ten months to finally go to a neurologist for my myoclonus symptoms. And that led eventually to a huge horrible mess. I didn't end the story with a feeling of, wow. I'm so glad I got help for that!
I don't like the dread I feel after making the appointment, and I don't like the one on one interaction of having an appointment.
I had grand plans for this summer. I was going to go to the doctor to get referrals for a dermatologist and psychologist/psychiatrist.
I kept putting it off and then I decided I just don't want to do it.
Counterarguments: Avoiding appointments is probably not a very healthy choice and probably something I need to work through. Though I am pretty okay at cutting my own hair.
5. I will imagine the therapist doesn't like me
I tend to feel very judged by people. That probably explains the above issue of not liking one on one interactions.
I often feel anxious with worries of being perceived as mentally unhealthy, unlikeable, creepy, a pariah, an attention-seeker, a bad person, etc.
I did online therapy a few months ago and worried I was writing too much; taking too much of the therapist's time; that my problems were ridiculous to him, etc. As I wrote in this post, some of these feelings come from projecting my own self-esteem issues onto others.
Counterargument: It's likely that a lot of my self-esteem issues are related to my autistic traits. And it could turn out that the therapist's mindset is more in line with a neurodiversity view of autism than a pathological/medical viewpoint. Instead of viewing me as a "very off" neurotypical person, she might view me as a cool autistic person. There's a chance she might not only give me the gift of a diagnosis but also provide me with inspiration, advice, compassion, etc...various things that might help me with my self-esteem.
Counter-counter argument: It seems just as likely to me that the therapist will be the type who A) thinks I'm not Sheldon Cooper or Shaun Murphy enough to be diagnosed with autism. B) Sees all my autistic traits as something that needs to be overcome.
6. I will be all messed up and confused about my behavior.
Am I taking off the (neurotypical) mask or am I putting on a mask? In most situations I probably try hard to appear "normal" especially if I feel I'm going to be judged. But in this case, do I try to NOT try to appear normal?
I've heard multiple stories of people being denied diagnosis, because they were able to make eye contact. Should I then avoid eye contact?
No, because if I fake any symptom and end up with a diagnosis....that's really not going to do well for my imposter syndrome.
But then what if I end up making extra eye contact just to overcompensate for these confusing feelings?
I also can totally imagine that I would be hyper-aware of any stimming I end up doing and then question whether I'm doing it subconsciously on purpose. Okay. Yeah. That's a contradiction. I know. What I mean is: my subconscious might be doing it for wanting-to-be-autistic reasons.
One day I was in the kitchen and suddenly noticed I was flapping/shaking my hands. It felt so normal and natural to me. But I had no idea if it's something I've always done and not noticed. Or if by reading so much about autism, I subconsciously picked it up.
I'm now realizing it might be something I've done when my hands are wet or I have crumbs or food on my hands. A couple of years ago, Tim saw me shaking my hands and thought my neurological symptoms had worsened and became more noticeable. But no...it was more of a habit thing.
One thing I've realized with habit kind of movements/stimming vs involuntary movements is that with the latter I very much notice it.
I definitely notice immediately when my toe twitches and then both my arms jump. But it took me awhile to notice that while writing this I've been scratching my right foot with my left toenail. I probably wouldn't have noticed it, at all, if I hadn't been writing about stims.
Counter Argument: If I go to the appointment, it might be entertaining to my future self (and other readers) to read about all these messed up feelings I end up having during the actual appointment.
I mean...looking at the bright side, my neurologist nightmare provided me with material for several blog posts.
7. I feel it is unfair to people who can't afford the diagnosis and despite my best intentions, I might end up seeing my autism as more valid than those who are self-diagnosed.
People in the autism community tend to say that self-diagnosis is valid. Though then they say and do things that make me feel they don't completely mean that. For example....they might not start their journey as an autistic influencer UNTIL they've gotten that official stamp.
Though I feel people shouldn't wear their diagnosis as a badge. Though I feel we should stop this mentality of diagnosism when it comes to mental illness or neurological differences....I think if I get a diagnosis, I might go astray from those values.
Counterargument: I can get a diagnosis but make it a point to stay true to the values that I value. I can make sure to remind myself of the financial and racial barriers to getting a diagnosis. I can also remember how I felt as an undiagnosed person, etc.
8. Getting a diagnosis will be time consuming.
I am blessed with more disposable free time than most people. But I have a huge to-watch list, and I'm really into Minecraft lately.
Counterargument: Is there one? I'm trying to build a city in Minecraft with multiple skyscrapers. And this is on survival mode, normal and NOT with a flat world seed.
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| Architecture is not one of my talents, actually. |
Update (3/1/21) After (despite) saying all the above....I am now pursuing an Autism diagnosis via an autistic therapist in Canada. We shall see how that goes. I love the idea of being diagnosed by someone who is professionally qualified and ALSO autistic herself. I also like that the process involves an initial screening. If they don't think you're autistic (which will yes be devastating to me), you don't need to go through the second part which is more intensive and expensive. So I can be devastated and have identity confusion, BUT at the same time, I will feel like I'm saying money. Maybe I'll use that money to buy myself oh-shit-I'm-not-autistic presents.
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