This is the first part of a two-part interview with Mike Macedo. Mike Macedo is a clinical social worker, psychotherapist, writer, and autism advocate working in Rhode Island. Macedo speaks on a variety of autism advocacy topics including school and workplace transitions. This week he shared some of his experiences growing up undiagnosed with multiple disabilities and often misunderstood by his peers.
When did you first become aware you were Autistic? What made you (or your parents pursue a diagnosis)?
When I was a baby, my mother noticed that I wouldn’t make eye contact often. I also didn’t start walking until well after I was 2 years old. I struggled from an early age with hand-eye coordination, so I was significantly behind my pre-school peers in shoe tying, handling scissors and overall gait. I was quite verbal though; I spoke and read at an early age, and displayed an advanced proficiency in reading and writing comprehension. Around age 5, I started to exhibit very rigid and defiant behavior. I became distraught when plans would change and not be as predictable as I would have liked. I struggled with emotional regulation, and would often melt down over minor things. I was also very obsessed with patterns as a child; I would hyperfocus on certain things, including Matchbox cars. I used to line them up in rows based on the make and model I perceived them to be.
My family moved from the Midwest to Rhode Island, where I still live to this day. This move, in addition to the stark differences in environment were very overwhelming. My classmates were very different from the ones in my Midwest city, they thought I spoke funny, and I just really struggled with sitting still and regulating my emotions when something wouldn’t go as predicted. My parents took me to be evaluated at Bradley Hospital in RI in 1997-98, and I was diagnosed with Asperger’s Syndrome and OCD.
I always knew I was different from everyone else. From an early age, I would often want to play by myself, and didn’t understand why other adults wanted me to play with other kids my age. At the same time though, I was always quite social. In school, I often didn’t know how to socialize, it seemed like everyone else just automatically gravitated towards each other, as if they were friends before even knowing each other. I didn’t know what to talk about, and didn’t understand the difference between “good attention” and “bad attention.” I knew that acting silly and saying wild things would generate attention, so I think I just rolled with it.
Describe the people in your life who really understood you as a person. What were they like? How did they act differently than others who may not have had a solid understanding of autism or your neurodiversity?
I think my parents have always understood me as a person who is not defined by a diagnosis. Despite there not being as much knowledge about high-functioning autism back then compared to today, I was always encouraged to participate in multiple activities, from gymnastics, to Boy Scouts, to music, none of which stuck, until high school.
When I was in 5th grade, my childhood pretty much ended. I developed hydrocephalus from a benign brain tumor that was continuing to grow and cause painful symptoms. Within 2 weeks, I had 3 surgeries including a biopsy, followed immediately by 1.5 years of weekly chemotherapy. Throughout this period, the main focus of attention on me was to keep me healthy. I still had a normal life, but I was always tired and sick from the chemo, and felt like I had to be treated like I was made of glass. To this day, I still have a programmable shunt and attached catheter going from the back of my head over my collar bone. I only notice it when I get headaches and when I put things over my head like swim goggles and hats.
Once I ended chemo by 7th grade, I felt like I had to pick up where I last left off in 5th grade. The attention on managing my Autism and behavioral issues in school never took a pause when I was sick, but I felt like the narrative of me being a “sick kid” was over, and I was back to being an awkward, instigative kid that most of my classmates didn’t like. I didn’t have an identity anymore. Before all this, I think my parents did what they could to learn from me, and I don’t think they had the intention to mold me into a NT kid, but I think that they were probably guilty of this a little bit, as were all parents back then, and I was certainly coerced into some level of conformity in school and from other adult peers throughout the years. It is why my parents would probably be shocked to hear me say why I never liked certain peers I had growing up, or certain things I was a part of as a child. I might have thought I did then, but realized that I do not upon educating myself more about my Autism and learning to self-advocate, which I never really got to do as a child.
Even though I live in the same town in RI I grew up in, I have no connection to any former classmates, and very little connection with any extended family. I feel like no matter what, I’m the weird one. It almost feels like I’m reintroducing myself to them, and some other people I’ve known my whole life. It’s like the child version of myself, and the adult version are different people altogether, and close peers don’t understand or relate to adult me. Of course, this is probably not true, just my perception, but I don’t want to be like that cute, child actor who becomes an adult and loses their identity, and no one really cares about them anymore.
You’ve mentioned the struggle with being viewed as too weird to fit in with your peers at times and not ‘Autistic enough’ to be in the Autistic group either. Describe this frustration. What is most difficult about this position?
This is something that I still feel to this day. Starting in middle/high school, I was one of three boys in my grade with ASD. Naturally, we were pretty much all in the same classes, despite us being very different, and having contrasting levels of functioning. Some neurodivergent people, especially boys and men, tend to gravitate towards augmented reality and non- interactive activities such as video games and super hero movies, etc. From an early age, that stuff never interested me. I never got into Star Wars, or Spiderman, or any of that because I knew it wasn’t real and an impossibility in the only world I knew, where no human defies gravity. This is not to say I have no imagination, I just relate more with realistic fictional books and movies. Science is not fiction for me.
I also present myself as NT all the time- I can hold conversations well, I’m a bit obsessive over my hygeine and what I wear, etc. I think I’m a good representation of the goals many parents of Autistic kids in the 90s and 2000s had. So yeah, on the surface I seem “just like everyone else” until I throw people off a little with my awkwardness and slight trouble formulating and processing words in a timely fashion. I think I tried to fit into this round hole throughout most of my adolescence, until finally realizing that my brain is different, and this will never happen, and that I should embrace my weirdness.
I think many people didn’t expect me to be so weird, and I wish that wasn’t the case, because that’s all I know. I can go a long time masking, but eventually it becomes too burdensome. I’m a maniacal type-A kind of person, I constantly need to be productive, accomplishing something, and in competition with others. I’m fueled by my OCD, years of undiagnosed ADHD (until recently), and undiagnosed PTSD; I do everything I can to be in control and not feel helpless, and sometimes I take on too much and I feel like my mind is scattered in a million different places. That’s when I know I have the mask on too long.
Autism is a Spectrum, but it can be easy to feel like you are alone in it. Many Autistic people I know and hear about are excellent with computers and do very well in school. Others are loud, extroverted types who are into the arts, music, and acting, and others are the folks who are into augmented reality, and seem to exist in that world, struggling to be independent and employed, etc.
I’ve never been into “geek” culture, but I also never felt “nerdy” because I always sucked at school, even though I love learning; I read and retain detailed information about all sorts of random topics, and yet I was a student-athlete throughout high school and college, even though I never liked sports. I also don’t like computers very much. I started off as a slow learner when it came to operating them, and while I’m as proficient in using them as anyone else my age, I wouldn’t know the first thing about working on software or gaming. I stopped playing all video games years ago, because I just couldn’t get myself to escape into them, and always felt like I was wasting my time.