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Late Identified Autism Interview: I Have a Different Way of Thinking, of Feeling, and of Behaving
This is the 28th interview in my series Interviewing Late-Identified Autistics. Scott is a late-identified autistic. My questions are in bold and Scott's responses follow in regular typeface.
What name and pronouns do you use?
Scott (he/him/his)
How old were you when you learned you were autistic?
I was diagnosed at age 53.
How did you learn you are autistic?
My Psychiatric Nurse Practitioner had asked me if I would be able to see her earlier than our normally scheduled next session. She said she wanted to speak with me about something (she had previously consulted with my weekly Mental Health Counselor). At this next session, she asked me what I know about autism. I told her what I knew, which is that it is a condition associated primarily with children. She then said that she believes I have ASD, and that my Mental Health Counselor agreed, but she asked me to pursue obtaining an official diagnosis, which I learned requires formal testing. I found a Psychologist who conducts Neuropsychological Testing, which tests not only for autism but for all various mental health conditions. I met with her twice, in which she conducted a full diagnostic interview and performed a series of tests, both one on one with her, in person, as well as online, on my own. She also spoke with my mother, as well as consulted with my Mental Health Counselor and Psychiatric Nurse Practitioner.
Several weeks later, she gave me a feedback interview in which she discussed the results and her findings, which included her primary diagnosis of Autism Spectrum Disorder as well as her diagnoses of Obsessive-Compulsive Disorder and Generalized Anxiety Disorder. She sent me a draft of her Neuropsychological Report, for me to review and comment on, and she then finalized the Report and sent it to both my mental healthcare providers and discussed it separately with them afterwards. It’s a carefully written, detailed, and very insightful report.
On a side note, after my Psychiatric Nurse Practitioner had first mentioned to me her belief that I was autistic, that same night I had a dream. In the dream, I was sitting on a beach near the waterfront, next to a woman, and she called out to her little boy who was running near the shoreline, yet he didn’t respond but kept on running. She then said to me that her son has autism. I proceeded to respond that I may have autism, too, and then I woke up.
How did you decide whether to self-identify or diagnose?
As previously mentioned, my Psychiatric Nurse Practitioner, after consulting with my Mental Health Counselor, stated to me her belief that I have autism and asked that I get formal testing done to confirm this diagnosis. My Psychiatric Nurse Practitioner advised that I could get testing done exclusively to make an autism diagnosis but recommended that I obtain a more complete Neuropsychological testing in order to see more broadly what conditions (including autism) I may have. As previously mentioned, the Psychologist who conducted the Neuropsychological testing diagnosed me with three separate conditions: Autism Spectrum Disorder, Obsessive-Compulsive Disorder, and Generalized Anxiety Disorder.
How did you feel when you learned you were autistic?
When my Psychiatric Nurse Practitioner first mentioned to me her belief that I have autism, it didn’t seem to faze me, although it’s something I never heard before as it relates to me. I think what most affected me was when I read afterwards that autism is a type of developmental disorder. Since I associate “developmental disorders" mostly with children, that had more of an impact on me, in learning that I may have a condition that goes back all the way to early childhood. (I’ve since learned that ASD is a lifelong condition, so that it might be present even at birth.)
How do any of your identities (gender, race, religion, sexuality, etc.) impact your late identification as autistic?
Well, my understanding is that males are four times more likely than females to be diagnosed with autism. I’ve also read that girls are typically less likely to be diagnosed than boys because of the traits that are often more inherent in girls. I am gay and wonder if I may have certain related traits (shyness? reticence? feeling different?) that may have contributed to my remaining undiagnosed for most of my life.
How did your friends and family respond when you told them you are autistic?
I’ve shared my autism diagnosis with only a few close people. I don’t think my mother really believes that I am autistic. I think this is because I did well in school and at work for many years, so how could I be autistic, I think is what she feels. I don’t blame her at all for feeling that way. But, of course, outward success in school or at work doesn’t paint the full picture or show those areas in which very real struggles and challenges are very much hidden from others. Now that I’m living with my mother, I think she sees the real challenges that I do have with various activities of daily living, such as cleaning, preparing meals, buying clothes, even making an appointment to get a haircut - things that are part of most others’ normal routine but which do not come so naturally or easily to me. I think my mother realizes more now how restricted my typical day is, in that I am easily satisfied working on and completing certain focused and very limited tasks often with not much else. I do other things besides my limited tasks but not effortlessly or seamlessly like most others seem to do.
Interestingly, I seem to open up more with strangers about my autism diagnosis than with people I know. If my father was still here, I would of course share it with him. But with most others in my life, I feel that those individuals whom I’ve felt most connected and comfortable with all my life - for me, this would mostly be my friends - they already like and value me for who I am so, for the most part, it doesn’t seem necessary for me to share this aspect of myself with them. They already accept me, and like me, for who I am, and we already feel comfortable with one another.
But, in the same regard, those people whom I’ve generally not felt very comfortable with, who I sense didn’t really have many positive feelings about me or have any real interest in me, or who didn’t make me feel comfortable with or positive about myself, I similarly see very little need, and also have no real desire, to share my autism diagnosis with them. If I never felt much comfort or acceptance with them, then I don’t think sharing this aspect of me would make any real
difference. To me, a person who likes, values, and accepts me is already a special person in my life, and, unless the topic came up, I don’t feel it would be all that necessary to share my autism diagnosis. My feelings about this, though, may change in the future.
Did you seek out therapy, coaching, or other forms of structured support for autism?
I continue to see my same Mental Health Counselor and Psychiatric Nurse Practitioner as before my diagnosis. I’ve looked into life coaching for people with autism, through the Asperger’s/Autism Network (AANE) (https://www.aane.org/), but right now I am content in continuing to work with my current mental health care providers.
I’ve attended several online webinars through AANE, including on life skills and on accessing public services, and have also attended an all-day autism conference sponsored by YAI (https://www.yai.org/), and I believe that both are very helpful resources to me. I also intend to look into healthcare services provided through YAI for people with autism and other intellectual or developmental disabilities.
I’ve also started to look into housing options for people with autism who, like me, may have difficulties navigating independent living, and I am interested in learning what may be out there.
How has learning you are autistic impacted your life?
Well, it certainly validates a lot that has made, and continues to make, me feel out of place, and in some cases more a passive observer than an active participant, in the world around me. With valuable support from both my mental health care providers, I believe I feel much less of a need to fit in and adapt myself to others and much more of a desire to be accepted, and valued, for who I am. I feel much less of a need to be in situations or with people that I don’t feel comfortable with, and more of a desire to be in situations and with people who do make me feel comfortable, valued, and happy.
I believe the knowledge that I am autistic, and not neurotypical, so to speak, makes me feel a little bit more comfortable with and confident in myself, and more happy overall. And, I think others sense this change in perception about myself.
Your Current Life
How have you modified or adapted your life since learning you’re autistic? In practical terms, or at least on the outside, I don’t think I’ve changed my life very much. I think many of my (autistic) patterns and tendencies remain about the same, including engaging in the same ritualistic patterns of behavior and having very limited interests outside of my hyper-focused tasks - although now I have something concrete to attribute it to. I feel much more comfortable with and accepting of myself, and therefore feel less of a need to explain to others the things that I do or choose not to do.
I feel much less pressured (within myself) to do things or to take part in events that I don’t really want to do. Maybe that’s the wrong attitude to have, as I feel I have less of a need or desire to do things to please others, but I also feel more free, and it’s a very liberating feeling.
As mentioned, I’m taking several online classes with AANE and have attended an all-day autism conference sponsored by YAI. I feel that I am part of a community, yet that doesn’t limit me from being part of various other communities at the same time.
I am more open with people, in particular strangers, about my being autistic, yet I sometimes wonder if it’s really necessary or even appropriate to do so. I once asked the Psychologist who conducted the neuropsychological testing which resulted in my diagnosis, if I should disclose this condition when I see doctors and fill out paperwork about my medical history. I remember the Psychologist advising that she believes it’s no more necessary to disclose my autism as it is my own sexuality, in this context.
Yet, I believe that since I’ve haven’t felt much of an identity, so to speak, for much of my life, but was rather largely defined by an overarching anxiety and awkwardness at not really fitting in, in some way I feel that now is an opportunity for me to identify as something, as something distinctive about myself that helps to explain who I am and why I am. However, maybe it’s sufficient, even more beneficial, to make this realization only to myself and not necessarily to others. I hope as I embrace my autistic identity, that I will gradually feel more comfortable, even motivated, to assert my identity in other, different, ways.
In what ways does being autistic enhance your life?
As previously mentioned, I feel it gives me an identity which in many respects I felt I never had. And, I hope it gives me the courage to establish my own identity in other areas, and to follow my own path in life (with help from others,
such as my mental health care providers), and not feel compelled to fit in or to please others or others’ way of life. I also believe this increased self-awareness and self-acceptance can make one much more comfortable with him- or herself and somehow more open, and inviting, to others. Although I may “struggle with” anxiety and with obsessive-compulsiveness, rather than these conditions necessarily defining me, I feel that autism on the other hand is something that I don’t “struggle with” but rather is something that is defining of who I am.
So, now, if someone asks me what makes me unique, statistically, within the larger world, I can say: I’m Jewish; I’m homosexual; I’m left-handed; and I’m autistic!
What are some of the challenges you face in being autistic?
Not being flexible in my daily life (not being able to “roll with the punches”). Hyper-focusing on certain limited tasks, to the exclusion of most other things (such as diversions and hobbies), and therefore having a limited and very restricted lifestyle. Having a difficult time navigating back-and-forth conversations, especially in group settings, and being less interested in having these interactions, and therefore feeling much more anxious and less engaged in these types of situations.
Not showing much interest in or capabilities for certain of the activities of daily living, such as food shopping, meal preparation, house cleaning, clothes shopping, or even paying attention to the clothes that I wear, for example, if they’re appropriate for the season. Not paying sufficient attention to certain grooming tasks, such as shaving or getting a haircut.
Becoming frustrated and annoyed when I’m interrupted from doing my hyper-focused tasks; this keeps me from engaging with others, including by phone. Inability to easily switch focus and to effectively multi-task.
Being easily bothered or distracted by certain sounds, especially when I’m trying to focus or concentrate, or sensations.
In what ways have you noticed you’re different from neurotypical people (behavior, preferences, communication styles, etc.)?
Not seeking out or paying much attention to the news. Not having the desire, or capability, to engage with others in “small talk.” Not reaching out to others close to me, including by phone. Playing the same song over and over. My conversational speech might appear to others to be odd at times. Desire for sameness. Being overly sensitive to certain feels (for example, is the steering wheel perfectly centered when driving? is the keyboard tray too bouncy or not perfectly level?). Being overly sensitive to certain sounds (for example, low hum of a radio, clicking sound of someone else’s keyboard) when trying to focus or concentrate. Repeating certain comforting phrases to myself over and over. Checking and re-checking (e.g., is car door closed, is water faucet off). Repetitive rituals (washing and drying hands multiple times). Some of these may be related more so to generalized anxiety or obsessive-compulsiveness, which, for me, are conditions that are comorbid to autism.
Do you experience any other mental or physical differences (including disabilities, other neuro-diversities, etc.) that impact you? How have these influenced your autistic journey?
I struggle with Obsessive-Compulsive Disorder and with Generalized Anxiety Disorder, my two other diagnosed conditions. Whereas I don’t typically engage in the physical stimming that is often associated with autism, I tend to engage in repetitive vocalizations, which I recently learned is equally a form of stimming as it tends to comfort me in the same way other more physical stimming activities do for others. There might be an association of this tendency also with obsessive-compulsiveness.
I believe my obsessive-compulsive checking & re-checking rituals (for example, making sure the car or house door is locked or that the faucet is off) tend to isolate me in a way that autistic patterns may also serve to do. I think they both similarly help to keep me in my own safe, predictable, and narrow type of world.
I believe my Generalized Anxiety Disorder causes me to continually compare how others interact with me versus how they interact with others (which causes me to question who others like or value more). This makes group interactions even more difficult for me when combined with the challenges of navigating back and forth conversations that I tend to associate more with autism. I therefore tend to experience group interactions as a continual evaluation of my own self-worth as compared to others.
I think being homosexual makes it even more challenging for me to find a romantic partner, in addition to the challenges of autism, and this is especially so since I don’t tend to feel comfortable in exclusively or primarily gay situations or environments.
If you work, what do you do for work? How does your autistic identity impact your work?
I worked as a Contract Specialist with the U.S. Government for over 24 years. For much of my career, especially before use of the Internet and electronic mail, I believe I thrived on the job since I was able to hyper-focus and concentrate almost exclusively, and uninterrupted, on my work tasks, whether it involved researching, reading, writing, or some form of analysis. Since work colleagues often operated from different locations than mine, there were only rare instances of meetings - and this was most comfortable for me.
With the introduction, and more commonplace use, of the Internet and email at the workplace, I found it increasingly more difficult to navigate the job effectively. Instead of being a fluid part of the work day, as I believe it was to most of my co-workers, the process of reading and responding to emails became, for me, an entirely separate and additional task to complete and which could have easily taken up a good part of my work day. I was unable to seamlessly navigate my emails along with performing my traditional job functions. And with the increasing use of virtual meetings and tele-conference calls, as the technology made this ever more possible, I found it increasingly more difficult to do what I preferred to do, which is to be able to sit alone at my desk for an extended period of time and get my work done uninterrupted and without (what I considered meetings and conference calls to be) distractions.
I also think my struggles with traditional verbal communication extended to email as well, since I tended to “over-write” and put more detail than was necessary into my composition of emails, often failing to consider the additional time and effort it would take for others to read through and decipher the essential points.
In addition, before the Internet and email, changes in work policies and procedures were transmitted around the office in hard copy, however, with the increasing reliance on electronic methods of communication, it was often up to the workers ourselves to find these changes and internet links, sometimes hidden among the many emails and communications we received daily. The structure and predictability I had found, and valued, in the beginning part of my career, were, for me, no longer there, and I felt more and more abandoned.
The job also became increasingly collaborative in nature, and I felt more and more awkward in my position as more time was being spent and emphasis being placed on group projects, team meetings, and conference calls. The discomfort in having to collaborate more and more with others combined with the increased anxiousness in not being able to get my work done at the desk made me feel much less confident in myself and my capabilities and in a sense more as an outsider in the job that I had enjoyed and done well in for so many years.
What helps you prevent or cope with moments of overwhelm?
I think I tend to plan things out as much as I can, particularly if I’m driving or otherwise traveling somewhere unfamiliar. If I’m walking in an unfamiliar area to someplace new, I tend to be hypervigilant in observing my surroundings (e.g., street names, landmarks) to make sure I will be able to make my way back. All of this, because I become extremely anxious and feel I can’t depend on either myself or on others to help me regain my bearings and will be unable to successfully navigate my way back in an unfamiliar situation.
In other cases, I respond to moments of overwhelm by getting away from the situation as soon as I safely can, even when it may seem totally inappropriate. This occurs in social situations, including with family, where I feel a lack of connection, warmth, or interest with others and therefore feel unimportant and out of place.
Similarly, I took sudden, extended leave from my job of 24 years because I felt overwhelmed by a sudden project deadline and felt unable to communicate my concerns, uncertainties, and fears, to my supervisors.
Sometimes, I feel like one of the best antidotes to these unpleasant situations and feelings of overwhelm is to go to a museum (I live in the New York City area) and wander through, looking at, and possibly pondering over, the exhibits and at my own direction and pace. I believe, for me, it’s an effective and therapeutic strategy which allows me to be inside my own thoughts and feelings, in my own way and on my own time frame.
What skills or strategies have helped you to work with your autistic mind? Because it was generally routine and predictable, and since I was able to successfully hyper-focus, I tended to feel comfortable and do well during most of my academic years. I was able to isolate myself in the bedroom when doing homework, as the sound of a TV or radio was too distracting for me, and my parents were very understanding.
At work, although I may have felt anxious or awkward about doing it, I would ask co-workers to either lower or (better yet) turn off their radio, since the distinct sound of others talking on the radio was a distraction to me. I generally made sure my co-workers understood that this was a problem I struggled with, and that it significantly interferes with my concentration, so as to ease my discomfort at making such a request to them.
If doing work at the library, which required an intense level of focus or concentration, I might choose to wear “clumsy looking” headphones in order to drown out the clicking sounds of other people’s keyboards, which was also very distracting to me.
I ultimately got lasik eye surgery because I became increasingly bothered by the sensation of the eyeglasses on the bridge of my nose and around my ears.
I tend to avoid group events as much as possible, including with family, not only because I generally feel uncomfortable or awkward in those situations, but also because my mind can’t effectively navigate the multiple back-and-forth conversations that may be going on. I tend to listen rather than speak. I also try to engage in one-on-one conversations with someone for as long as possible in order to avoid the discomfort of trying to navigate and be amongst multiple people or of standing alone. (I do, however, currently take medication to reduce my overall level of anxiety, and I believe this helps me to feel more comfortable with, and accepting of, myself, so that although I still may not function effectively in a group setting, I don’t feel as much of a need or a compulsion to do so or to fit in.)
When working at my previous job, I did all that I could to avoid taking part in collaborative efforts with others, going to meetings, etc; I did so mostly by keeping myself busy at my desk.
I feel that having an actual diagnosis of autism, a condition which I understand may be present at birth, helps me to understand that I just have a different way of thinking, of feeling, and of behaving, than others, and not an inferior or lesser way, and also that I shouldn’t feel obligated to be in situations or among people where I don’t feel capable or comfortable, but instead I need to seek out and let myself be in situations and with people with whom I do feel capable and comfortable.
What accessibility/support have you sought since learning you’re autistic? What support do you wish was easier to access?
I’ve mostly taken online webinars through AANE. I’ve recently taken a webinar on accessing public benefits for those with autism or other developmental disabilities. I’m also signed up to take webinars on home management and meal planning. I’ve also signed up for an upcoming webinar, “The Lost Generation of Older Autistic Adults.” I think it’s a poignant title for something that is very true and real for so many of us. And, I think this is why it may not be easy for late-identified adults, as compared to much earlier-identified children, to access many of these services.
Several months ago, I attended an all-day autism conference sponsored by YAI, which included talks by professionals in the field as well as conversations by individuals with autism. The conference also included exhibits by different groups serving those with autism, including one from a healthcare system operated by YAI which I’m interested in looking more into. I think people with autism and other developmental disabilities, as well as with other types of disabilities, could benefit from a different type of healthcare system.
I’ve started researching housing opportunities for people with autism, and am looking into possibly scheduling a consultation with someone from the Autism Housing Network (https://www.autismhousingnetwork.org/). I sometimes wonder whether something like the Kibbutz communities found in Israel may be suitable for people like me who struggle and are challenged with independent living. In this type of community, every person has his or her specific job or role to do, while most of the individual’s needs are taken care of by the larger community.
I work with my weekly Mental Health Counselor and with my Psychiatric Nurse Practitioner, and they help me to understand myself better, to navigate life more effectively, and to live a better and more fulfilling life overall. I think it’s crucial to find the mental healthcare providers who you feel are most right for you and to feel a level of connection, trust, and care from these individuals.
How have you self-advocated for your needs?
As previously discussed, I have utilized the services and programs provided by organizations such as AANE and YAI. I watch YouTube videos by adults with autism, especially those who, like me, are late-identified, as well as by organizations for people with autism. I’ve learned from my Mental Health Counselor not to rely almost exclusively on one single person’s viewpoint or opinion, but rather to watch and listen to multiple and varied viewpoints and opinions.
Also, as previously discussed, I am currently looking into an alternative healthcare system that is currently run by YAI for those with disabilities such as autism, as well as alternative housing opportunities through sources like the Autism Housing Network. I think individuals with varied types of disabilities such as autism could benefit from a more seamless, rather than a disparately connected, healthcare system.
I believe my new-found diagnosis of autism has made me more understanding, loving, and accepting (and even, proud) of myself. I feel much less of a need to fit in with others, but rather to be accepted for who I am - and this is very liberating. I also feel more of a need to put myself into situations that provide comfort and with people who provide warmth, kindness, and compassion, and consequently less of a need to be in situations and around others who don’t. I feel more compelled now to find “my people” and my place in this world.
How does your autistic identity impact your friendships?
I believe those people whom you’ve always felt a close connection with before your autism diagnosis remain your same close connections afterwards. For me, I don’t believe having, or sharing, an autism diagnosis makes others feel closer to me or for me to feel closer to them. I believe those people who have, or haven’t, given you a sense of warmth, comfort, belonging, or acceptance, remain the same people, regardless. Yet, knowing that people like myself with autism often struggle with establishing and maintaining social connections, this makes me value even more the friendships I have had and continue to have in my life. I consider these to be very special people!
The Psychologist who formally diagnosed me with ASD indicated in her detailed report (after having spoken with me, with my mental healthcare providers, and with my mother) that I don’t understand well the concept of reciprocity in relationships since I tend to downplay my own wants and needs in favor of others’. This is something I need to pay more attention to and be more mindful of, as I may not yet understand the characteristics and qualities of a true friendship. This is something I will be continually working on with my mental healthcare providers.
How does your autistic identity impact your romantic relationships?
Maybe largely due to my being autistic and/or to my generalized anxiety, I have never had a romantic relationship. I think because of my limited focused interests, which keeps me from doing other things that may bring me happiness and/or pleasure, I haven’t really attempted much to seek out a romantic partner - although I do think I long for a lifelong and lasting bond and commitment.
I also think my being autistic may have largely kept me from going through the process of dating. Dating just doesn’t seem to be natural, or authentic (for me) - although I do like the idea of speed dating. I also think traditional matchmaking may be quite helpful and appropriate for people with autism, as it largely substitute’s someone else’s professional judgment of people (at least at the initial stage) for one’s own.
I sometimes wonder whether having a romantic partner might help to bring me out of my narrowly focused way of seeing and of doing things. I believe the right person would help me to break out of my, in some respects, narrow and very limited world.
I think my being autistic could make me a potentially dedicated, appreciative, loyal, (and focused) partner to the right person. (The Psychologist who formally diagnosed me with autism did state in her report that I do need continual support and guidance from my mental healthcare providers to help keep me from falling victim to the wrong type of person which I think is more possible due to a lessened ability to “read” another person and his or her intentions.) In addition, I think an autistic individual’s desire for authenticity in meeting or being with someone, especially after a lifetime of masking and not being authentic to oneself, may possibly make the person more vulnerable to being used or being taken advantage of by the wrong or an opportunistic person.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
I feel the overall medical system is disjointed and not very well coordinated or managed. I think this makes it difficult for people in general, and this definitely includes the autistic population. I’m currently looking into a health care system that is designed for people with autism and other developmental and intellectual disabilities. It’s sponsored by YAI, and I’m interested to see in what ways it’s more geared towards autistic individuals.
I think having one central person, presumably your Primary Care Provider, who is very good and is proactive in following up with patients and in coordinating care with Specialists, would be beneficial for autistic people like myself who may lack the necessary executive functioning skills to properly manage and coordinate their care. I also think many people, not just people with autism, could benefit from a dedicated service (for a fee) where you work with someone (a non-healthcare provider) who professionally manages and navigates your journey through the healthcare system.
I believe having healthcare providers who are geared and sensitive towards working with non-neurotypical individuals, and who show considerable warmth, patience, and gentleness, yet still provide effective and practical medical guidance (including to understand and work with the limitations autistic people may have in implementing medical interventions), could be life-changing for people with disabilities, including for those on the autism spectrum.
For me, being given detailed written guidance and information is extremely helpful as a follow up to a doctor’s or other healthcare provider’s verbal instructions, or at least the opportunity and the time to take written notes during the visit. In addition, being given the opportunity to repeat back to the provider his or her instructions in order to ensure proper understanding, as well as to demonstrate back to the provider the proper procedures to follow, would be very helpful to ensure a full and complete understanding of the doctor’s instructions. I don’t think typical verbal instructions are as intuitively understood at the outset for many individuals on the spectrum, which is why detailed written follow up is especially important.
Your Past
How did being an undiagnosed autistic child impact your childhood?
When my Psychiatric Nurse Practitioner first mentioned to me that she suspectds I have Autism Spectrum Disorder, it wasn’t the autism diagnosis itself that really impacted me; it was when I learned that it’s a type of developmental disability, that is what hit me the hardest, that it’s something that is part of a person’s very early development - but that it was missed all along. I felt as if I was looking at myself from the outside, and I felt very sorry for myself as a child, as well as all the way through adulthood, that I struggled with certain very significant challenges (primarily socially) but had nothing (a diagnosis) to support me in these struggles to fit in or to get by. I thankfully had parents who were very sensitive to me, and also had friends whom (to the extent that I could) I felt comfortable with, but especially as I got older where there became increasingly more complex situations and expectations to follow, or even to understand, life as an outsider struggling to fit in or to get by became much more challenging and distressing.
But, then, I wonder, would my life as a child or as a young adult (or as an older adult) have changed, in some meaningful (or even slight) way, for the better, if I had received an autism diagnosis at an early age? Would it have made me more capable socially if I had the benefit of certain interventions? Would I have been given the opportunity to be a much different person, if I had had this diagnosis, and knowledge, from an early age? For example, my late dear father would have preferred if I had gone to sleepaway camp rather than day camp or to a more geographically distant college rather than a local (commuting) college, for my own social benefit. Those were things I knew I didn’t want to do. If I had had the awareness that I was autistic, and the social challenges associated with it, would I have felt, or been, more capable or more desirous of doing these things, of going away from home, as a child or even as a young adult?
Or, if there was a sleepaway camp or a more geographically distant college that was geared towards people like me, would this early diagnosis have potentially made a profound difference in my life, and would there have been some special, or better, place where I would have felt much more comfortable, at ease, and happy, and “at home?” Or, would I rather have simply been encouraged even more so to fit in and feel comfortable among the general population, in the neurotypical environment and culture? In what way(s) might I have been made to feel less pressure and stress and discomfort in my life, if I had had this diagnosis at an early stage in my life?
Would I have continued to focus primarily on my studies and to mostly avoid extracurricular activities, if I had knowledge of my own autism? Would I have felt just as nervous and uneasy in gym class since it lacked the more structured and predictable environment of the classroom, having had this diagnosis?
And later in life, with this knowledge, would I have been less likely to drop out of law school (after only the second week) because I felt extremely uneasy (scared) with the more participative, even adversarial, teaching methods that were used (being called on by the professor to confidently state and vigorously defend one’s position)? Or would I have been less likely to drop out of graduate business school because I felt continually uncomfortable with the sensation of the eyeglasses sitting on my nose and around my ears, and felt I therefore couldn’t perform at my best, with this diagnosis?
Or, especially in the latter part of my career, would knowledge of my own autism have made me feel more comfortable working on group projects, or of being away from my desk to participate in group meetings and conference calls, or have made me less hyper-focused on my selected tasks and more capable or comfortable with multi-tasking?
I’m not sure if having a diagnosed autism, rather than an undiagnosed autism, would have made me a much different person than who I was, or who I am, or would have changed my feelings or experiences throughout my life in a mostly neurotypical world. Yet, I do feel the most benefit if having had an autism diagnosis might have been knowing, or being shown, where I most belong and to have been given the opportunities throughout my life to be in places and with people that offered me the best chances of finding comfort, camaraderie, and true belonging.
What ways did you camouflage or mask?
I think during much of my early childhood, I didn’t really mask much, in the sense that I felt more free to be myself (as I believe younger children tend to do). It’s hard for me to envision whether or not I exhibited what may be considered classic symptoms of autism at a very young age. I think, unlike in my later childhood years, I enjoyed being outside of the classroom, for example, for recess or for class trips, in the same way as my fellow classmates. I liked the structure of the classroom but I think I also liked the “freedom” and running around that things like recess offered.
I also went to a smaller, private Jewish Day School during my early grade school years, and it was more of a protected and nurturing environment for me. I was definitely shy, and didn’t act out, but I don’t think I felt such a sense of not belonging or of a need to fit in, as I did during my later childhood and during all my adulthood. Maybe because it was easier for me, as a young child, to like what my classmates liked, and it was overall a very structured and comfortable environment for me. I wasn’t necessarily happy, go-lucky, but overall I was very content, thanks to both my school and my home environment with both my parents, where I felt very safe and protected.
As I got older, while still attending the Jewish Day School, especially when my classmates became more interested in clothes, in sports, in hobbies, in music, or in the opposite sex, I felt stuck in my earlier school years, when things were “simpler,” when there were less things going on, and less interests to be had, outside of the classroom, recess, school trips, etc. Although I still felt safe and protected at school, with my teachers and with my classmates, I gradually felt more and more like an outsider, as I didn’t share all of these varied interests that many of my classmates had or enjoyed sharing with one another.
I was still interested primarily in my school work and did not share in these outside interests. But, again, for the most part, I didn’t feel pressured to be otherwise. I was happy in what I liked and preferred to do, although it still remained rather limited as compared to my classmates. Also, I didn’t share in the romantic interests that some of my classmates were now beginning to do. It all seemed foreign to me, but it didn’t really bother me, although I must have known to some extent that I was different.
As I got older, I also began to feel more self-conscious in gym class. This especially became the case when I transferred to public school for my junior-high and high school years. I think this is so because gym class remained a less structured and predictable environment than the classroom, and also I think it’s because my classmates seemed to take more initiative in sports in the later school grades than in the earlier years and they also seemed to be more judgemental of others who may not be performing as well, in the process. I think in gym class, more so than in the classroom, I probably tended to “mask” more, or just do what I could to fit in and get by, while being in a less structured, predictable, or (for me) safe environment. I think by “masking,” I mean that in essence I allowed myself to have less of an identity, so as to blend in and not be as noticeable, as much as possible.
Interestingly, I think the one activity in gym class in which I felt less of a need to mask, or to get by, was when we did several weeks of square dancing. I think I felt less self-conscious and anxious maybe because it didn’t require any particular athletic ability. And, it was actually fun, especially when we messed up in one, or many, of the “calls.” Also, because it was one of the few activities where boys and girls were mixed together, I think it may not have felt as intimidating to me, with regard to athletic ability. And, although it involved quite a degree of physical coordination, which some say that people with autism may lack or fall short of, as well as a degree of social interaction with one’s fellow participants, it somehow gave me more of a sense of comfort and enjoyment than practically all the other activities in gym class. Although the calls that were made were generally unpredictable, there was still a measured amount of predictability (in messing up the moves!), and also a certain defined structure and rhythm to it, that made square dancing unique and, for me, mostly comfortable.
My college years didn’t require me to mask much, I believe, since I was generally into my studies and spent much of my time in the library or at home doing my school work. I didn’t explore the neighborhood or take part in other activities at the school, so for the most part I felt free to be myself and focus on my studies.
Where I did mask the most in college, and where I felt most uncomfortable and out of place, was when I traveled on annual trips which were part of my scholarship program. Unlike in my classes, there was not the same structure, and they had much more free social interactions, and variability in what to do and with whom, that I felt mostly adrift, unsafe, and alone and longing to return back home. As in gym class during my junior-high and high school years, on these group trips, I felt a need to blend in, to be nondescript, and just to get by. I felt very little sense of identity on these trips.
At my job of many years, my masking activities occurred mostly during meetings and especially when taking part in team projects. Since I much preferred to be doing my own work at my own desk, more than anything else, I remembered having to feign interest when other team members shared what they were working on in the project. Generally, I had to pretend to enjoy being part of a team and sharing mutual enthusiasm in each other’s contributions and accomplishments and in the overall project in general. I felt most myself, and comfortable, sitting at my desk working on my own distinct part of the project with little interest in how everyone’s contributions fit together.
As the job became increasingly more collaborative in nature, with more meetings and conference calls, I felt I had correspondingly less of an opportunity to be myself, as I much preferred and felt more adept at working alone or participating in one-on-one interactions only, which were simpler for me to navigate. The feeling of my having to mask much more often, just to fit in or get by, is one of the main contributing factors to my having taken an early retirement.
Similarly, at most family events, I’ve generally feigned interest or enthusiasm in being in a setting in which I didn’t feel at all comfortable. Except with my very immediate family, I generally felt I was struggling just to fit in and get by in these situations and may have likely put myself in a state where others may have somehow viewed me as nondescript or with less of an identity.
One area in which I don’t feel compelled to mask my own self is when I feel someone or something is interrupting my ability to focus or concentrate on something, as it concerns my hypersensitivity to certain stimuli which interfere with my ability to focus. This has included my being more compelled to ask former co-workers to lower the volume of their radio when I was trying to focus on my work, or to wearing clumsy-looking headphones at the library to drown out the clicking sounds of someone else’s keyboard, or to repeatedly going back to the optician to adjust and re-adjust eyeglasses that never seemed to fit or feel right. In these instances, I more readily let my own needs, and any associated discomforts, be known, so that I would be able to feel more comfortable and more “right.”
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
Identifying now as autistic has dramatically changed how I view my childhood and earlier periods of adulthood. I can now understand, as a young boy, why I focused so much on my schoolwork and was less interested in friends or in outside activities or interests.
I understand more why I progressively felt more uneasy and out of place in this world, and much more challenged and distressed, as I left the more “simpler” early childhood years and got older, and was faced with an increase in social demands and expectations.
I understand more why my college years consisted of not much more than the academic aspects, such as the classes and homework and studying, and little in the way of the social aspects and the explorations that are characteristic of the college experience. I also understand why I may have felt more comfortable in a smaller, liberal arts college rather than in the larger urban university that I actually attended.
I understand more why I couldn’t make it in law school, in particular the increased level of assertiveness and “thinking on your feet” that was required, and also why I stopped graduate business school because the sensation of my eyeglasses became too unbearable for me to be able to fully concentrate on my studies and be “at my best.”
I understand more why I couldn’t maintain a clean apartment, prepare meals, maintain an adequate wardrobe (including for work), or effectively perform many of the activities of daily living, for the period of time when I was living on my own.
Knowing now that I am (and it seems, always was) autistic makes me sympathize with and love myself even more.
How did being an undiagnosed autistic impact romantic relationships?
I never dated or seriously searched for a partner since it seemed extraneous to my life’s focus, which was either school or work. I saw much of the world around me in which people, by nature and intrinsically, either had a partner or were actively looking for one. It’s something that seemed very normal to me, but still outside of my own normal - and this generally didn’t bother me.
I also don’t think for much of my life that I had the capacity to understand the dynamics of being in a romantic relationship. (Although, maybe my preference for, and comfort in, one-on-one versus group interactions, may actually make me as well as other autistics the ideal candidates for being in a romantic relationship with someone.) In addition, I believe that my being homosexual, and the questioning or discomfort that was associated with it, made the whole idea of partnership with someone even more confounding to me.
I would say the primary time when it became a problem for me was when I went to a family event, and saw most family members who were partnered and who therefore had a ready “ally” of sorts. Because of my significant difficulty in socializing, whether from shyness - which I now wonder if it is, in reality, a form of autistic masking - or awkwardness or general incapability, these are the times when I would most have hoped to have had a partner to lean on.
The concept of dating, even if it didn't take me away from my school or my work, seemed (and still seems) to me too complex and involved (how many articles and books are there on the “rules” of dating?). I don’t know if I have the capacity (and possibly, even the desire) to attempt to go through the dating process which is clearly how I believe most partnerships or marriages are able to happen.
I believe, as I have gotten older, that I have a stronger, possibly innate, desire to be intimately close with someone. I believe the right person, or persons, are definitely out there for me, and I also believe that I am the right person for someone out there, too. As my therapist continually reminds me, I just have to get out there in order to find that person.
I also believe now, more so than when I was younger, that I do have the capacity, and the capability, to be in a relationship with someone. And, I do believe if I found the right person for me, that coming together with that person within a romantic relationship would very possibly come naturally and feel right to me. Since, to love is to be human.
I’m fortunate to live near a big city (NYC) with many cultural institutions, and it’s just a train ride away. I sometimes envision myself wandering alone inside a museum, stopping to look at and ponder over a particular exhibit, and finding the right person standing right there next to me! And, I therefore believe this is one powerful example of an instance in which I (as others) need to actively work against one’s innate desire for sameness, rigid routines, or restricted interests, and instead to get out into the world, and to find what (and who) makes one truly happy and complete.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
When I first learned and soon afterward shared with my mother that I have autism, and gave my mother a copy of the Psychologist’s Neuropsychological Report to read, she did have questions and doubts about my autism. After all, I did well in school and had a successful career (up to a certain point). I think my mother understandably believes, as many others naturally would, that if I was able to successfully navigate life at school and at work, how could I possibly be autistic?
My response would be that, outside of school and work to a large degree, navigating through life in general has no particular set of (or clearly defined) rules or instructions, and in addition has no reasonable degree of structure or predictability. That is where many of the challenges and struggles of autism come in, and that’s why an autistic person like myself may have difficulty participating and navigating in group settings, including with family, and might do anything possible to avoid them. Or, why an autistic person may have difficulty navigating, or even considering the possibility, of dating.
In describing autism, I would also state that in many cases, people such as myself would rather engage in a more restrictive type of routine, and with minimal distractions - and that by “distractions,” this may also include the diversions and enjoyments in life that most other people are able to, also want to, weave into their daily lives naturally.
I would explain that although the literature generally states that people with autism have “special” interests, that this may instead more properly be classified as having “focused” interests (I learned this at a recent AANE webinar). I don’t have any special interests, so to speak, but I do have focused interests, and that would have included my studies at school or my projects at work, as well as my limited-focused tasks at home.
I would also explain the concept of “stimming,” which are comforting or calming rituals that autistic people may engage in. Up until recently, I believed that I had lacked this particular symptom supposedly so characteristic of those with autism, but I then learned (from this same AANE webinar) that stimming does not necessarily have to consist of physical rituals (such as rocking) but could also include repeated vocalizations to oneself, which is something that I do engage in. I have described these vocalizations previously to one of my care providers as “silly” thoughts or sayings that I repeat to myself, but she has helped me to re-frame these now as “comforting” thoughts and which are equally characteristic of autism and its stimming behaviors.
In short, outward signs of success (school or job, for example) do not paint the whole picture of someone. The more unseen internal struggles, thoughts, and behaviors, or the more apparent elements of somehow being “different” than others, in ways that sometimes others may view in a judgemental or critical manner, may be the truest signs of autism. And, I would also explain the concept of “masking,” which if done effectively throughout one’s life, may actually hide the signs of autism, of being different.
What do you wish others knew about autism?
I wish that others knew that individuals with autism simply have a different way of thinking, and interacting in the world. We may have a different way of communicating (or choosing not to communicate) with others; we may not feel comfortable in group settings, even with family; we may have more narrow and focused interests, which keeps us from engaging in the things that most other people seem to do intrinsically and which may also make us much less adept in switching our focus and attention in the effortless ways that others seem to do; we may be bothered by certain sounds or sensations which others may think as something rather strange; we may much prefer to work or be alone rather than collaborate or be with others - that is, until, hopefully, we find that person, or those persons, who do feel right to us, and they may or may not be autistic themselves.
We may appear normal on the outside, yet that appearance of “normal” may take quite a bit of effort, even planning, on our part, and be quite an exhausting and distressing thing to do, day in and day out. We may not appear as obviously challenged as those with other developmental or intellectual disabilities, yet we may be just as challenged and struggling to get by or to fit in - and often we are deficient and unsuccessful at it.
We are not a lesser version of others but rather a different version and with possibly very real gifts and strengths.
Although I may not announce it to the world, and it may be considered as something very personal to me, I would ask others to please not deny my identity as being autistic. It is who I am, and I would also ask others to please not make me seem somehow to be a lesser version of yourself - as someone less worthy, less interesting, or less important.
What is your advice for someone who thinks they might be autistic?
I think there are typically comorbidities associated with autism, in my case, obsessive-compulsive disorder and generalized anxiety disorder. I would first recommend seeking out a Psychologist, Social Worker, Mental Health Counselor, or such professional, to begin one’s journey of learning more about oneself, of understanding oneself. and of ultimately making a better and truer life for oneself. It might entail working to change certain aspects of oneself, yet also accepting, even embracing, certain other aspects of oneself.
I would of course recommend working with a professional whom you feel truly comfortable and compatible with, whom you sense cares to a reasonable degree about you, and whom you feel is someone who is truly “in your corner.” Also, someone who listens to you patiently and respectfully, but who also shares his or her own thoughts as well as offering very practical advice. Someone who is perceptive, and questioning, and whom you sense has a good head and a good heart. As with a romantic partner, I would recommend not settling, yet also give the other person (the care provider) some time and a chance, and it may still take several tries before you feel, in your mind and in your heart, that you have found the right person to help you and be your support, guide, and even ally in life.
With guidance and direction from your primary mental healthcare provider, I would possibly also consider seeing, in addition, a Psychiatrist, Psychiatric Nurse Practitioner, or someone similar who might work with you to see if a medication might help with some of the challenges from your comorbid condition(s), for example, depression, anxiety, or obsessive-compulsiveness. (My understanding is that there is no medication specifically for autism.) As with your primary mental healthcare provider, I would seek someone whom you feel truly comfortable and compatible with, and again, it may take several tries to find whom you feel is most right for you.
I think a good Psychiatrist, Psychiatric Nurse Practitioner, or similar professional would consult with your primary mental healthcare provider, and explore with you - and not pressure you - the possibility of trying out a certain medication(s). And who might change doses of such medication(s) gradually, or possibly switch medications, to see if a different one might be more beneficial and effective. I also think such a person would also provide a good amount of talk therapy and exploration of yourself, to learn more about you and also guide and advise you, aside from the prescribing and monitoring of medications.
While continuing to work with one or both of your mental healthcare providers, I would then seek out a Psychologist who specializes in Neuropsychological Testing. There are providers who specialize specifically in formally diagnosing autism, but I would recommend seeing someone who performs a complete battery of testing to be able to diagnose not only autism but all other types of conditions (comorbidities) that you may have, which in my case is Obsessive-Compulsive Disorder and Generalized Anxiety Disorder. I think it’s most beneficial to know (by diagnosis) everything that you might be challenged or struggling with, since they all work together to make you who you uniquely are and where you might need the most help and guidance.
I also think it’s important for the Psychologist who conducts the Neuropsychological Testing to consult with your other mental health care providers as well as speaking with a parent or sibling who can speak more to your childhood as well as to your present life, in order to gain the most information and insight about you.
Some people may choose to self-diagnose their autism, including for financial reasons, which is very understandable, but I believe it would be beneficial to seek out and obtain a formal diagnosis, since this might be helpful, or needed, in order to access or obtain certain public and private services and benefits for those with autism. I think it’s also helpful to have an insightful and detailed diagnostic report that I believe only a Psychologist who specializes in Neuropsychological Testing can provide.
Whether formally diagnosed or not (and it doesn’t matter), I would seek out autism support groups. Such support groups, I’ve found, are interested in helping those who know or suspect they have autism, regardless of any actual diagnosis, and equally and with no distinction. I’ve attended online support webinars with AANE as well as attended an all-day autism conference sponsored by YAI, and I’m sure there are many others out there.
But, I wouldn’t stop there. A person is more than their own mental health condition(s), and I would recommend also seeking out others in all areas of life, including, and especially, with those whom you share the same interests and passions, to hopefully find those people whom you can feel the most comfortable and compatible with. Other people who share your autism may be one very real community for you, but there are other communities out there for you, too. You can find “your people,” I think, anywhere, possibly even on a different planet!
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
I’ve purchased two books so far, but have yet to read them. They are: The Complete Guide to Asperger's Syndrome (Autism Spectrum Disorder): Revised Edition by Tony Attwood, and Asperger's Children: The Origins of Autism in Nazi Vienna by Edith Sheffer. I believe the internet has a wealth of articles about autism, but I would, of course, recommend in particular those written about, and by, adults with autism, especially many of us who were diagnosed later in life, what some call the “Lost Generation” of late-identified autistic adults.
I’ve also started watching YouTube videos by other autistic adults and support groups and organizations for autism, but have also learned (from my Mental Health Counselor) not to rely too much on any single person’s experiences or viewpoint, but to more broadly seek out information to help you learn more about autism.
Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?
I would recommend articles or videos which explain the variety of symptoms commonly seen in people with autism. But, I would also understand that not every identified autistic symptom will apply, or be recognizable, to you. Just because you don’t share some of these same symptoms doesn’t mean that you don’t have autism.
For me, when I learned that people with autism characteristically have “special” interests and also typically engage in stimming behaviors (e.g., rocking, tapping), and I couldn’t particularly identify with either of these, although I was formally diagnosed, I felt somehow that I was “lesser” than those who did share these characteristic or typical symptoms.
Yet, when I attended the recent AANE webinar, “Asperger’s/Autism 101 For Adults,” I learned that many people with autism don’t necessarily have “special” interests but more appropriately, they have “focused” interests, which is something that I identified with. I also learned that stimming doesn’t necessarily have to be repeated physical behaviors, but can also be repeated vocalizations, again something which I identified with. So, I would encourage others, as I’ve recently learned myself, not to let others’ experiences, or even the formally identified criteria for autism, which you may or may not identify with, lead you to believe, or make you feel any “less,” that you don’t equally have autism as someone else. Autistic symptoms can present themselves in quite different ways across the autistic population. And, in addition, my understanding is that many people with autism have comorbid conditions, as I do, and that this may also impact how their own particular “brand” of autism presents itself.
For me, receiving an autism diagnosis validated so much for me and, in a sense, gave me an identity which I never felt I had. It’s difficult to go through life, as many of us do, knowing that we’re different in certain ways, and just not like the others, and so we have to mask or camouflage who we really are because we have to fit in and since there’s seemingly no other alternative available if we want to be able to get by in this world.
I also wouldn’t be discouraged by others, even with the best and most caring of intentions, who may seriously doubt the validity of our own autism diagnosis, simply because they don’t understand (and can’t be expected to understand) the often hidden challenges and struggles we face, and the unseen efforts we make, to camouflage our true selves, in order to fit in.
Are you involved in any forms of autistic activism?
I’ve donated, and will continue to donate, to many different types of charities out there and also find it heartening to now be able to donate to organizations, such as AANE and YAI, which represent and advocate for people like myself, with autism. I haven’t yet been involved in any other forms of autism activism but I do hope and anticipate doing so, especially with regard to seeking out or helping establish
housing alternatives, as well as healthcare alternatives, for adults with autism, to help us to be able to live more safely, independently, healthfully, and happily, with the best and proper supports available.
Are there any autistic activists, autistic entrepreneurs, or autism groups you would like others to know about?
For me, it’s been AANE (https://www.aane.org) and YAI (https://www.yai.org), which have been very helpful both in providing me with referrals for autism testing and diagnosis as well as in now offering me support for living with autism. I’m sure there are quite many more helpful autism referral and support organizations out there.
Connecting with You
If someone would like to connect with you, how can they reach you?
I’d be happy if you’d like to reach out to me - my email address is sds1836@verizon.net. Especially helpful would be for us to be able to discuss housing alternatives (actual or proposed) for adults with autism.
Do you have any works, websites, or other creative ventures you would like to share with others?
No, not at the moment. However, if you’d like to see me, I did do a testimonial video last year for the firm that I worked with and which helped me with my Federal Disability Retirement. It’s available on YouTube, and can be accessed at the following link: https://www.youtube.com/watch?v=d8k-6C3xqAw
I also posted a comment to this video which refers to my autism diagnosis (since it’s not specifically mentioned in the video). Please feel free to check it out!
Thank you for reading. I’m looking for more late identified autistics to complete written 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.