‘Lying down one night, it randomly hit me. ‘I’m pretty sure I have autism…’: Mom explores late autism diagnosis in wake of 2-year-old son’s diagnosis

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“I was self-diagnosed with autism last year, during the pandemic. I often felt different, awkward, and out of place growing up but we didn’t know anything about autism and neither did my family. My mom always made sure I felt loved and supported, no matter what, but most of my battles were internal and mental, and I never really understood why. When I went through the process of diagnosing myself in my adulthood, things really started to click and make sense. The first time I heard about autism was when my son was diagnosed with Autism Spectrum Disorder at a little over 2 years old in 2014, and I have been an Autism awareness and acceptance advocate ever since. Nothing was different and nothing changed when I announced that I was autistic to my family and friends because I had already become such an advocate and ally for the autism community, along with my son being autistic, that it was just a normal conversation for us.

mom and son with autism taking a picture
Courtesy of Shekira Farrell

I am very lucky and blessed to have people in my corner who love, accept, and support me. If I had to give any advice to someone struggling with accepting their neurodiversity, it would be that while our diagnosis is a significant part of who we are, it isn’t everything because no one thing defines us. At the same time, the faster we can accept everything we are, including our diagnosis, the happier and more at peace we will be because no one can understand and advocate for us as we can!

The pandemic demanded that people spend more time with themselves, whether they liked it or not. I’m already naturally a homebody and prefer to keep to myself, but that solitude was more than even I was used to. During that time though, there was a lot of self-reflection which opened the door to more self-awareness, all of which led me to my self-diagnosis.

Moment Of Realization

I was lying down one night last year, and it randomly hit me, ‘I’m pretty sure I have autism…’ I don’t remember what the train of thought was before that, or what exact situation led to that epiphany, but I remember feeling restless and smiling because deep down I already knew. So, I got up and started taking a few online assessments and writing down the autistic traits/characteristics I have that helped lead me to that conclusion.

Things really do hit differently when you take the time to start reflecting back on moments of your life and remembering situations through the lens and perspective of autism. Life genuinely starts to make more sense, and that brought me feelings of comfort, peace, and relief. There weren’t any feelings of anger, resentment, or sadness, it was more like, ‘that makes sense…’ because at the end of the day, this was a part of my journey of deep self-reflection, self-love, and self-awareness during quarantine.

little girl who is later diagnosised with autism
Courtesy of Shekira Farrell

Road To Diagnosis

While some say you cannot officially diagnose yourself with autism, the realization and self-reflection you get from that step alone can start you down the path to a better understanding of yourself and can also ultimately lead to an official diagnosis, if you can or choose to get to that step. Unfortunately, the process of getting evaluated can be a hassle and can get overwhelming.

I tried for months, but it is much harder to get an official diagnosis as an adult for multiple reasons including health insurance coverage, finding a professional that can actually provide an adult diagnosis, and many health care professionals trying to immediately send you down the path of medication before learning about you, your journey, and your symptoms/traits (at least that was my experience).

Within those months of trying to schedule an appointment with an adult diagnostic specialist though, I did speak with other health care professionals and members of non-profits for autistic adults and we all agreed with my diagnosis. Sometimes, people look for an official diagnosis because it can help them get access to support, services, coaching, and medications that they couldn’t get without it. But at the end of the day, sometimes it ends at a self-diagnosis, and yes, that is still valid. It’s a personal decision.

 My Autistic Traits

  1. I prefer to do things on my own, rather than with others.
  2. I am most comfortable with routines and prefer to do things the same way.
  3. I find it frustrating if my schedule or routine is upset/changed.
  4. I am very sensitive to certain noises and pick up on noises that others may not notice; I wear headphones to listen to music and use the technique of running water to drown out noises around me (much more since the start of the pandemic).
  5. I have a very vivid and strong imagination.
  6. I find numbers and strings of information fascinating (number sequences, patterns, license plates, letters on signs, etc.).
  7. I am very good at picking up on people’s emotions, what they may be thinking, their body language, and their facial expressions; I am immensely empathetic and take on people’s emotions quite easily and strongly, which is a reason I tend to stay to myself a lot.
  8. I notice very small changes in appearance and surroundings.
  9. I am very detail-oriented and can be considered a perfectionist.
  10. I like collecting information about things I’m interested in.
  11. I have been making lists for as long as I can remember and have notebooks full of them. Categorizing, organizing, and listing is comforting, relaxing, and something I genuinely enjoy doing.
  12. I always felt out of place and socially awkward growing up.
  13. Social situations make me anxious and uncomfortable. Although I can handle myself when being in those situations is necessary, I avoid them when I can.
  14. It’s important to me to carefully plan any activities I am going to do or be a part of.
  15. If I am interrupted while in the middle of doing something, I can find it slightly difficult to get back to it afterward.
  16. I catch myself making too much eye contact when people talk sometimes to show that I’m paying attention, and have to remind myself to look away once in a while.
  17. If a thought pops up in the middle of a conversation, I try hard not to interrupt but I also try to get it out before I forget what I want to say, which can sometimes seem like I’m not giving someone a chance to talk or like I’m dominating the conversation.
  18. I have strong interests and get upset if I can’t pursue them.
  19. I find that others have a hard time understanding how I’m feeling and sometimes I have a hard time expressing it.
  20. I can be blunt in my assessment of people and things, and sometimes it can come off as rude.
  21. I find it upsetting sometimes when something happens that I didn’t expect to happen.
  22. I find myself bothered if my things are moved or rearranged by someone else.
  23. I have some difficulty multi-tasking and can get really involved in things I love, which can cause me to overlook other things I need to do.
  24. I have a small friend circle and prefer it that way.
  25. I don’t really like being the center of attention, especially in a large group setting, and prefer to be behind the scenes.
mom doing make up to raise autism awareness
Courtesy of Shekira Farrell

Key Things I Won’t Do After My Diagnosis

  1. Feel the need to prove how autistic I am to others, whether they are in the autism community or not.
  2. Try to mask my traits for fear of judgment or ignorance.
  3. Use the terms ‘high-functioning’ or ‘low-functioning’ to describe my ‘level’ of autism.
  4. Use my energy to entertain the ‘battle of preferences’ in the autism community, which includes: red and gold vs. blue, puzzle pieces vs infinity symbol, ‘autistic person’ vs ‘person with autism,’ etc. because at the end of the day, the ‘majority’ is not the whole and it comes down to respecting each other and each person’s personal preferences.

Why Didn’t I Get Diagnosed When My Son Was Diagnosed?

I already know some people are wondering why I didn’t get officially diagnosed when Jaiden was first diagnosed with autism or why the thought that I may be autistic never really occurred to me while raising my autistic son. Jaiden’s pediatrician and a few therapists did suggest that I get tested and see if I had a certain chromosome that could explain Jaiden’s autism diagnosis. I was constantly asked if anyone else in the family had it as that could be the cause for it being passed down to him, but that way of thinking and the wording they used made me not want to do it because they were looking for someone or something to blame for my son being who he was, and I wasn’t going to go along with it. So, the short answer is that I was too busy defending and protecting my son from all of that and I wasn’t worried about me actually being autistic.

Honestly, even if I was found to be autistic, nothing would have changed because my son would still have been autistic, and he was the one that needed the support and attention at the time. On top of that, Jaiden’s diagnosis was the first time I ever heard about autism, and he was my first and only child, so I was pretty busy learning and being the best mother I could be for him.

mom and son who both have autism
Courtesy of Shekira Farrell

Autism In Society

My only concern about my diagnosis wasn’t in the diagnosis itself, but in people’s misguided reactions and views once they heard about it because of the stigmas still associated with the word autism. Now, let’s not confuse that with feeling ashamed of my diagnosis, because that’s not the case at all. I fully embrace it and have no problem telling other people about it. I’m referring to the unsolicited pity and the ‘I’m sorry to hear that’ because I have autism (it’s annoying). The ignorant or negative statements I’ve been fighting against for my son since he was diagnosed (it’s tiring), or the ‘shock and awe’ of what I’ve accomplished like I’m an exception to the rule of what autistic people can do (it’s not okay).

The good thing is I’ve been about this life going on 10 years and have already paved a path for myself and my son in the Autism Community and the world through our journey. This just gives me a slight but significant title change from dedicated autism mom to advocate dedicated neurodivergent autism mom and advocate.

Thank you for taking the time to read about this new chapter in my life and I hope this helps someone else in some way if they are curious about getting diagnosed as an adult. Whether it is a self-diagnosis or an official diagnosis, our stories matter!”

selfie of woman self diagnosed with autism
Courtesy of Shekira Farrell

This story was submitted to Love What Matters by Shekira Farrell from  Neptune, New Jersey. You can follow her journey on Instagram and her son on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

Read more stories about autism here:

‘Bleach can cure anything, Katie. Don’t you want to cure your son?’ What I thought was a ‘moms tea party’ turned into a dark autism bleach cult.’: Mom stresses ‘beauty of autism’ after cult discovery

‘If your son was less disabled, we could be of service to him.’: Mom shares ‘horrendous email’ received when seeking support for son with autism

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