%20(500%20x%20200%20px).png)
This is the 31st interview in my series Interviewing Late-Identified Autistics. Maci is a late-identified autistic. My questions are in bold and Maci’s responses follow in regular typeface.
What name and pronouns do you use?
Maci, She/Her
How old were you when you learned you were autistic?
30
How did you learn you are autistic?
The discovery of learning I was autistic started when I was 27 after I asked my mom why the cause for my selective mutism was not investigated. It was then she told me, “We just thought you were autistic and we wanted to see if you’d grow out of it.” Apparently, the traits were obvious enough for several of my elementary school teachers to bring up the possibility of me being autistic and recommended I get tested in the 90’s.
Even with this information, it took another two years for me to explore how autism can present in different people. There was a final incident causing me to dive into researching ASD. I was spending time with friends and when sharing something sad I told them, I may smile but it is only because I am not sure what to do with my face and it happens automatically. The more stimulated I got through the few hours socializing the more I would say the second parts of sentences before the beginning until it reached a point I was pushing myself not to go nonverbal and I had lost my ability to make facial expressions. After that day I started to wonder, do most people struggle with these things?
I searched for valid screeners available online which led to taking the RAADS, AQ, CAT-Q and they all scored above the ‘likely autistic threshold.’ I then found the clinician who completed my assessment using the ADOS-2, ADI-R, MCMI along with several questionnaires about my daily living. A few days after my 30th birthday, I was diagnosed with level 2 ASD.
How did you decide whether to self-identify or diagnose?
I decided to pursue a formal diagnosis for a few reasons. Being diagnosed with cPTSD and ADHD made it difficult to distinguish if I was also autistic so I needed an experienced professional in both trauma and ASD to assess me. I was not able to confidently self-diagnose and I assume my trauma influenced my self-doubt. I was also fortunate enough my insurance covered an assessment and I didn’t want to waste the opportunity to be assessed. I don’t regret pursuing a formal diagnosis but I did not expect all the cPTSD symptoms the assessment and the location of the assessment would bring up.
How did your friends and family respond when you told them you are autistic?
My partner has been my support system through the whole diagnosis process and was convinced I was autistic before I was. I assumed before getting the results of my assessment the clinician would conclude my symptoms are all from trauma but my partner was confident I would be diagnosed. He has been extremely understanding and accommodating. I don’t have many friends or family to share
the diagnosis with but those I did were mostly positive and the diagnosis provided more context for who I am.
Your Current Life
In what ways does being autistic enhance your life?
I believe being autistic has enhanced my life in several ways. My strong urge for justice and right and wrong has pushed me to stand up for people who have trouble standing up for themselves and encouraged me into taking accountability if I do something wrong. I believe being autistic has influenced how strongly I believe in fairness and equality and being open-minded. I always see ways in which I can improve as a person which has both enhanced my life and challenged it by sometimes having trouble seeing the progress I have already made being so focused on what I can do better.
Special interests have enhanced my life by making some things that may seem insignificant to most bring great joy into my life such as visiting all the hats at Sears as a child. I don’t know anyone who would be as excited as I was to see the hats at Sears as I was with my grandma Pat.
I think being autistic influences the intensity of love I have for animals. I am content spending most of my time with my animals and I take meeting all their needs very seriously. The love I have for animals, my attention to detail and perseverance has enhanced my life by how indulged into the pastel and colored pencil animal portraits I create I can get.
Another special interest of mine is Psychology and Sociology. I have been able to understand human behavior more efficiently from learning about these two subjects.
What are some of the challenges you face in being autistic?
Examples of my autistic challenges include: Not being able to drive, working long-term (autistic burnout forced me to leave), sensory hypersensitivity/integration problems, executive dysfunction, challenges relating to other people, isolation, capability of masking for only a short period, extreme difficulty adapting to change, ruminating, trouble identifying my needs, difficulty not leading a conversation to a special interest, difficulty and sometimes incapability of understanding and remembering topics outside my special interests, confusion on how to reach my goals, facial expressions/body language, being on disability income, and trouble understanding people while also being misunderstood.
In what ways have you noticed you’re different from neurotypical people (behavior, preferences, communication styles, etc.)?
I have noticed I need a direct communication style and many neurotypicals want you to gather little clues through many conversations to conclude what they mean. I would prefer someone tell me directly what they mean than expect me to be able to read between the lines. I have also found in some of my interactions asking direct questions to understand where I fit in someone's life or what they need from me can result in defensiveness if they are unwilling to tell me or I am unable to guess. Not all neurotypicals are this way but I find myself confused and frustrated with these types of interactions and I wish more people would say what they mean instead of using passive aggressiveness and expecting others to know what they are expressing and why.
I have noticed many neurotypicals find more importance on how you are able to present and understand nonverbal communication than if you are saying what you mean.
I prefer meaningful conversation. If a conversation is based on special interests and passions I could talk for hours but small talk is a challenge. I have trouble understanding how to get from small talk to deeper conversations in a way that makes neurotypicals comfortable. If I am overstimulated, I don’t register much of any conversation except for direct questions or I go nonverbal.
I prefer to spend most of my time alone and when spending time with someone I need structure the majority of time. I like to know what to expect from my environment and what to expect next which can be boring or frustrating for people who enjoy being surprised or spontaneous.
Do you experience any other mental or physical differences (including disabilities, other neurodiversities, etc.) that impact you? How have these influenced your autistic journey?
I also have ADHD, cPTSD, GI problems, PMDD, mild hypermobility, learning disabilities, a long list of environmental/ food allergies and was diagnosed with Type 1 autoimmune Diabetes at 12. All of my diagnoses have impacted my life. I would say they influenced my autistic journey and my autistic journey influenced them because having a combination of challenges makes it difficult to relate to anyone in one category. For example, even though I know everyone has had a combination of challenges and autism is a spectrum, I struggle to talk to other autists about the trauma from being homeless from the ages of 17 to 20 and how being diagnosed last year has pushed me to reprocess that trauma with a different lens. I don’t know how to talk to other type 1 diabetics about how challenging it is trying to work long-term while having disabilities and also needing guaranteed access to my insulin, insulin pump and blood sugar sensor plus all my other health needs.
Is there anyone else in your family who is neurodiverse, autistic, or otherwise?
They are undiagnosed and I am not a professional but yes.
What helps you prevent or cope with moments of overwhelm?
Rituals, routine, keeping my environment the same, spending time alone in a very dark room, spending time indulging in my special interests. All of these help with preventing and coping with moments of overwhelm. If I need to do something outside of the home, having a specific plan where I am able to know what will happen next is necessary in hopefully preventing meltdowns/shutdowns.
What accessibility/support have you sought since learning you’re autistic? What support do you wish was easier to access?
Since my assessment I have sought out help from the resources on my report for occupational therapy and career assistance but I either didn’t receive a response from the organization or they served primarily children. I wish there were more supports in general for autistic adults assisting in better quality of life and assisting us in reaching our goals. Even the online searches I have done looking for coping skills resulted in mostly articles on how to ‘deal’ with autistic children for parents or family. I wish there were more resources targeted for actually autistic communities to embrace our strengths and cope with our challenges rather than inflict harm by making it seem like we are just someone a neurotypical can learn to deal with.
How does your autistic identity impact your friendships?
Since I was a young child, I had trouble making my own friends. I either didn’t think of trying to initiate or I didn’t know how. My teachers would at times help me make friends or I would consider them my friends. In grade school, I ended up being friends with those either much younger than me or I would talk to my teachers or the parents of my peers.
As an adult, I still struggle to socialize and make friends. Since my diagnosis, I now have a better understanding of what I need in a friend and a large part is acceptance and understanding of my autistic traits while I hold the same acceptance and understanding standards to myself for my friends.
How does your autistic identity impact your romantic relationships?
My partner has been accepting of my autistic identity even when my needs are contradictory to his needs having a neurodivergent ADHD mind. We tend to over-empathize with one another by not wanting the other to feel guilty for struggling with certain aspects of the relationship and daily tasks but by doing so our individual needs may go unmet. We are working on finding how not to cause the other to feel guilty while also still having our needs met.
Struggling to find where I would be able to work and contribute with paying bills impacts our relationship and not knowing what steps to expect next without being able to work. My partner tends to accommodate my need for sameness at the cost of his need for excitement and flexibility and I believe it impacts the relationship.
There have been misunderstandings on both sides when our communication styles aren’t understood by the other.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
I have been in therapy for 17 years and was never screened for ASD in all that time even with clear autistic traits. After I brought up my research and screeners I had done, my therapist realized my suspicions were correct and she was validating through the entire assessment process but autism was not mentioned before that. Women and girls often go through large parts of their life, sometimes their entire lives thinking they have something wrong with them or are misdiagnosed with personality disorders before being diagnosed accurately with a neurodevelopmental disorder. Even when the traits are apparent. I feel the medical systems could be improved by supplying training to educate those in the field that girls and women can too be autistic and the traits can present differently than boys.
An adapted version of the DBT (Dialectical Behavioral Therapy) full program for autistics and those with comorbid Borderline Personality Disorder to teach skills in emotional regulation, identifying and naming emotions, and expressing emotions could be beneficial. Even though being misdiagnosed with BPD led me to the DBT full program, I still found the program to be the most beneficial therapy I’ve done. The program greatly improved my Alexithymia by teaching how to logically get to what emotion I must be feeling and taught me the words and layout of expressing my feelings to others along with several other skills. By removing the potentially damaging aspects of DBT (like teaching how to mask), the program could be life changing for autistics like it was for me in a positive way. I also believe anyone diagnosed with BPD should be given a valid ASD screener since BPD is one of the most common misdiagnoses and comorbid diagnoses for late identified individuals.
I also believe they could be improved by supplying more support to late-identified autistics in the process of accepting their diagnosis.
Your Past
How did being an undiagnosed autistic child impact your childhood?
From all the harm ABA therapy has caused many autistic children, I am not sure I would have wanted to be diagnosed as a child but I would have wanted to know I experienced the world differently and that was okay. I wish my parents showed they cared enough for how I was doing to make accommodations for my sensory needs, communication differences, adaptive behavior challenges ect. Instead of invalidating, shaming, and making fun of these differences. I think my childhood could have been more positive if I had the support of my parents helping me embrace my differences instead of instilling a belief I didn’t belong or was not enough trying my best to keep up with the neurotypical standards I didn’t understand.
I was always afraid and I couldn’t understand how the other children didn’t seem to be. I was hypersensitive to the emotions of others, I may not have been able to name those emotions but I felt them constantly. The emotions were so overwhelming and sharp, I needed to find ways to dampen my fears, sensory hypersensitivities and the emotions I felt off of others. At thirteen I began to drink heavily. At this age and with the alcohol dampening the overwhelm, I was able to pick up more on how and what I needed to do to mask my autistic traits even if I didn’t know that was what I was doing. The bullying and rejection did lessen in some ways but I lost much of myself by dampening the overwhelm.
I remember my brother telling me when I was thirteen, “I miss when you were afraid of everything, including me,” after I began to mask. I was easier for most of my family to handle when I was always afraid and quiet even if that person was still there under the mask. Being undiagnosed or at least not knowing how I was different impacted my life by teaching me who I was, was unacceptable whether I was masking or not. I would be rejected either way.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
I now view my childhood and earlier periods of adulthood in a few ways. I realize now, I was an easy target for bullying and abuse. I was naive and didn’t understand people could say one thing and mean another or have unclear or malicious intentions. I understand the internal fantasy world I created to cope with the confusing and traumatic world as a child. I have more sympathy for my younger self not understanding why so many people thought I experienced the world in the wrong way and for how I adapted unhealthy coping skills for the constant overwhelm I felt. I have more understanding of myself in general. I also have anger for my parents who should have protected me from being an easy target but I was an easy target for them as well. After finding out they thought I was autistic as a child and they still punished me for not understanding or abiding by how neurotypicals live, the emotion I identify is anger.
Talking to Others About Autism
What is your advice for someone who thinks they might be autistic?
Research not only the behavioral aspects of ASD alone but the common physical and mental comorbidities and risk factors. For example GI problems, hypermobility syndromes in yourself or family members, seizures, Premenstrual Dysphoric Disorder (extremely common among autistic women and ADHD) , severe Postpartum Depression, Postpartum psychosis (approximately 1-3% of the general population of women experience this while approximately 12% of autistic women), allergies, sensitivity to a variety of things like medications, perfumes, cleaning supplies. Learning and speech disabilities; identifying if your mother has type 1 Diabetes or had type 2 or gestational Diabetes while pregnant with you (risk factor) ect.
If you find yourself relating to some of the main traits but not all of the traits look closer at the traits you relate to and those that differ in case there are other diagnoses that may be a more accurate fit.
If you are on social media, join groups designed for autistics and read the posts to see if you relate with their experiences. You’re allowed to ask any questions and express that you suspect you are autistic and are curious if anyone relates to your own experience. You do not need to be diagnosed to connect with the community. Having imposter syndrome is more common than not when exploring if
you’re autistic and even when formally diagnosed when you are late-identified. Try to be self validating of your experiences. If after researching or after a reliable assessment you learn you are not autistic, you have still learned about yourself. You don’t need to be diagnosed for you to use some of the tools and skills if they are beneficial to your life or be accepted in the community.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
If you have challenges in sensory processing I recommend reading, “Sensory Perceptual Issues in Autism and Asperger Syndrome” by Olga Bogdashina. There are a few outdated terms, however, I found it incredibly helpful in understanding my sensory processing disorders and interesting to read. I recommend this book for those just diagnosed, those exploring if they may be autistic and also to parents of autistic children who would benefit from learning how to validate and accommodate their children’s sensory differences rather than punish or dismiss their children for something they can not control.
Connecting with You
If someone would like to connect with you, how can they reach you? Pennel36@gmail.com If you have any questions or would just like to connect feel free to email me.
Do you have any works, websites, or other creative ventures you would like to share with others? (please provide links)
My art page on Instagram is @maciijane
Thank you for reading. I’m looking for more late identified autistics to complete interviews just like this one. I’ll send you the questions and you can complete them on your own time. Please email me at jackieschuldart@gmail.com if you are interested.
Kommentare