Autistic Interviews #13 Daniel
I prefer to use the term Queer as the umbrella term and use LGBTQIA+ to help define what counts as queer
Welcome to Autistic Interviews!
Here you will find different Autistic Voices and Real Life Stories shared, each one unique and highlighting different lived experiences, whilst sharing a common ground: autism. Participants choose which questions to answer, in their own style, making each interview a totally authentic real life story!
Name: Daniel
Age: 35
Sex: Male
Gender: Male
Nationality: American
Diagnosis: Diagnosed autistic
How old were you at diagnosis?
I first had suspicions when I was 29. I got a "soft" diagnosis around the time I turned 30. This was basically a therapist going through some options for what was going on with me, then asserting that they felt Autism was the best fit. But there was no formal diagnostic process, documentation or so forth.
If not diagnosed, are you seeking diagnosis or plan to in the future?
I am currently going through the full process now and was verbally told that a formal diagnosis will be provided. I just need to wait for all the paperwork to get written up.
Why is diagnosis important to you?
When I got my "soft" diagnosis, that was good enough for me. It explained what was going on and made sense to me. But I lived in a rural area at the time with little to no justification for the full blown process. I gained nothing from all the time and money for the full and formal version. I just wanted an explanation for what I was experiencing.
The difference now is that there is actual government support in the area that might be worth taking advantage of and I now work for a company with an actual HR department. These require the formal documentation, so there is a point to it now.
Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other?
Autism is certainly something that can be disabling, given the right context and the exact profile of the Autistic person. However, it has too many strengths associated with it and too few contexts and profiles are fully disabling for me to feel that Autism itself is a disability, "condition" or disorder. The full justifications for this positions
I have spent too much time studying politics and history. I know what happens to people seen as disabled or in any way mentally disordered. The fewer people who get those terms applied to them, the better.
Have you been diagnosed autistic but you don't think it's the right diagnosis?
No. At first I was unsure if I was Autistic or Bipolar. But the Autism label appears far more accurate.
Is anyone else in the family autistic? How did they all find out?
None are confirmed. My dad appears like he might be, but he has a bunch of irrational, constantly changing opinions that fluctuate with his mood. The most consistent thing is that Autism is not great. I am not particularly keen on raising the subject with him.
I also have one ADHD cousin and a schizophrenic one. Another had clear struggles with depression that no one wanted to address. There is probably more mental health conditions. But due to poor communication in my family I can't be sure. Because at least two of those are very common in Autistic people and Autism appears to have at least some genetic component to its origin, I would not be surprised if I have some other Autistic family members. They might not know themselves, but they probably are out there. I just don't know.
How did you end up getting diagnosed autistic?
I was basically going through a pretty rough period and needed to know what was going on. As alluded to in previous answers, I was unsure if I was Bipolar or Autistic. I came down to these emotional highs and lows. I figured out since then this appears to be because I get a sort of drug like euphoria from delving into my special interests too intensely to be sustainable. Then stresses caused by other areas of my life cause meltdowns and burnout. This looked like Bipolar to my limited understanding of the disorder.
But at the same time, I had a friend I met during my study abroad in the UK who is Autistic. They invited me to a Facebook group meant to provide professionals and parents who deal with Autistic people access to Autistic perspectives. I joined, expecting to get information on how to be a better friend to them. Instead, the Autistic perspectives were giving me pause due to how suspiciously close to my own experiences they were. Looks like they thought I was Autistic myself and wanted me to contribute my perspectives.
Around this time (summer 2020), I reached out to a psychologist. I told them what was going on and that I thought it could be either Bipolar or Autism.
For late diagnosed people, what effect did diagnosis have?
Basically, everything made sense then. I now knew why I was experiencing this emotional instability. I could better manage my mental health because I actually understood it.
Do you think getting diagnosed sooner would have had an impact?
Yes, it probably would have. However, I like the fact that I got diagnosed as an adult. I do not feel my family would have handled knowing I am Autistic well then. I do not feel their thoughts are very accepting now after decades of additional insights into Autism. I was born in 1988 - the year after the famous ABA Lovaas study. The belief that ABA is good for Autistic people is still justified to this day based off that one study, even though Autistic people have put it, ABA in general and Lovaas on blast for their many problems. I have no doubt that the views of my parents and what passed as "science" then means I was spared a lot of misery because of the late diagnosis.
Do you tell people you're autistic?
I certainly don't hide it. I have a bunch of masks I wear in public with Autistic symbolism and messages on them. Some outright declare that I am Autistic. But I rarely explicitly tell people. I have no interest in suppressing or hiding myself for people who can't even pretend to care. But I also can't trust everyone. I will confirm it or outright state it only when I feel like it will not come back to bite me.
Do you feel more confident expressing yourself/advocating for yourself since diagnosis?
Yes, I do. But this has not been strictly speaking a product of that diagnosis. The diagnosis seems to be more a product of the advocacy. Due to my friend from the UK and growing exposure to other Autistic voices, I came to increasingly understand and value the broader Autistic experience. I value those Autistic people and began using this insight to advocate for them. What changed was me understanding that I was part of what I was advocating for. This gave me more freedom to act and be forceful when needed. The diagnosis was a product of the advocacy and helped accelerate and deepen it.
Whilst waiting to be assessed did you feel like you might be wrong/crazy for thinking you might be on the spectrum?
No. Not at all. I felt this was the best fit as I understood the possibilities. And the more I understand Autism, the more clearly it seems to fit me.
How has going undiagnosed affected you?
It honestly seems to have helped me. Like I said before, it helped me avoid the abuse that is ABA. It helped me avoid the stigma of the label. In school, I was clearly weird and feared because of it. I suspect that the label of Autism would have made these concerns at school worse. Now, I face less of a backlash for either Autism or my weirdness.
Do you have any other mental health diagnosis?
Not formally. Anxiety and panic attacks are clearly issues however.
Are you medicated/ever been medicated?
Yes. I was on Paxil for a mercifully short 4 days. I did some research on that drug while I was on it and found this rather comprehensive list of its side effects. These were broken down into sections based on how common they were. I had basically every single misery inducing side effect that impacts 5% of people who take it. Most relevant to here is my complete lack of energy, ability to sleep or eat. Plus body tremors. At the time, I worked on a farm 75 miles from my house. This means physically intense manual labor with a knife and long periods of night driving at high speeds on the highway. As if those symptoms were not bad enough on their own, my job magnified the risk of severe injury or death.
Have you ever had positive/negative experiences of mental health support?
My therapists (one in Georgia, one in Tennessee and one in New Jersey) have all been good. But I have found the utility is proportional to what I knew about myself when I went in. I needed to be able figure some of the basics out for myself before the support actually helped me. Without this, the support was limited by my own poor understanding of what was going on.
Looking back in childhood, what were the signs?
The one that jumps out at me the most is when I would go to dentist or eye doctor appointments. When waiting to be taken back, I would sit there and read chemistry books. This started in at least second or third grade. They were certainly not the most advanced, but I was still still reading chemistry books instead of fiction.
Do you have sensory issues?
I do. The feel of cotton balls is hell. I also have one epically specific issue. That is to the feel and sound combination caused by vacuuming unpainted steel covered in wet clay.
Do you stim?
I mainly hide it in public. Most of the "obvious" stimming I do is when I am alone.
Do you have special interests/passions/hobbies?
World building is a big one for me. Naturally, I love Lord of the Rings. But utopian revolutionary groups trying to "build a better world" also fit. It is hard to describe why I click with these so well. The best I can say now is that so many interesting connections get revealed. You get to see how single elements can create weird, unpredictable emergent properties.
How do you think others perceive you and why?
As a kid, the perceptions were not great. In middle school, I was feared because people assumed I was going to shoot up the school. By high school, the fears "upgraded" thinking I was going to use bombs. In college I was claimed to have an Asian fetish. None of which were true. Now people are refreshed by my weirdness and appreciate my nerdiness.
Do you feel understood?
By most ND people, yes and almost immediately. For NT's? Not so much. The best I can gather is people are not used to having to try to understand people so that creeps them out.
Are you in therapy/had therapy in the past?
I am in therapy now. This is mainly to deal with the stress from work and anxiety issues.
Are you cis/hetero/LGBTQIA+ or Other? (Do you like/dislike these terms?)
I do dislike the LGBTQIA+ label, mainly because of politics involved with it. The order of the letters and which ones are in will inherently privilege some and exclude others. I prefer to use the term Queer as the umbrella term and use LGBTQIA+ to help define what counts as queer. Personally, I feel I am Asexual.
Do you think labels are helpful or not? (labels such as Autistic, LGBTQIA+, Disability, Woman, Man etc)
Someone I read pointed out that there is a lot of value in knowing you are a normal zebra instead of an ugly horse. Yes, I feel labels can be liberating so long as the definitions of those labels are not used to oppress or defined in toxic ways. That appears to require the labels being defined by and for the people who want to use them.
Are you employed? Do you struggle to get/keep a job?
I have been full time employed in farming for about 8 years now. That has been a struggle though. This full time status has only been possible through repeated long distance relocations, frequent job changes and a willingness to tolerate extreme disrespect. It certainly appears that I will be barely tolerated if and only if I am meek and completely obedient and submissive.
Have you had positive/negative experiences in school/employment due to autism/acceptance/ableism/misunderstandings?
Certainly. I have had a coworker go on a 5 minute rant once about how Autism and Schizophrenia were the same in his mind and that he did such good work relieving their families of their "burdens". I had another claim that all Autistics were inherently childlike, thus it was okay for people to infantilize her own daughter. Another claimed that his sister's Autism "ruined his weekend".
Does your employer/colleagues know you are autistic?
They do, because I am done hiding it. I have been very open about it at work and been willing to call people out for incidents like above.
How do you feel about being autistic?
Currently, I feel proud and grateful. All the traits that I feel make me a decent human being are in some way related to being Autistic.
Thank you Daniel for your voice! :)