Diagnosed as an adult, recalling my childhood, reaching out to other adults on the autism spectrum

qandaMy family has a lot of interesting stories to tell people about the younger me. That, in itself is not unusual. However, the stories always… I don’t know. I don’t resent my family for telling them over and over again but they always made me feel a little, strange. Uneasy even. Not so much that I’d wish they wouldn’t tell them anymore but at the same time, something just didn’t sit right.

First, a little history from more recent times, my first child was diagnosed with autism at 2.5 years of age and ever since then, I had become much more aware of my own self as a result. It’s not that I didn’t always know I was out of place, that much was very very obvious. But without a point of reference… it’s just an indescribable feeling. However, once I began to see so much of my own life flash back at me as I experienced these things for a second time as an extension of my own son’s experiences, I knew that I had to take action.

So at the age of 35, I found myself in my doctor’s office telling them that it was time that I had an answer. Rather than always suspecting but never really knowing… I needed to be sure.

I was diagnosed with Aspergers, or “Autism Spectrum Disorder” as per the DSM 5. I was sure to ask if I was assessed using both the old and new requirements and they assured me it was true.

Before then, I had kept my unease silent all my life. I had to, I couldn’t describe it. After I recognized what it was, I still kept it silent. Because I didn’t dare claim something about myself that I couldn’t be sure of myself, something I couldn’t prove. Not something as important to me as autism had now become.

Finally, when I was officially diagnosed, I wrote about it in a 3 part series, you can read part 1 here, but I also promised that this blog wouldn’t be about me. It’s about my son, plain and simple.

However, in the interest of autism awareness, I feel this is an important point to make. Because people need to realize two things:

  1. The ratios you hear about children having autism? 1 in 88? 1 in 110? The same ratio exists for adults.
  2. Many adults that have autism… don’t even know it.

I have to ask myself, if I had never had a child with autism and thus, never come to know as much about autism as I do now, would I have ever known what it was about me that just didn’t seem to add up?

Think about it.

Back to the topic at hand, old stories that cropped up every time my family met someone new or were just telling old tales, I suddenly realized why I’ve always had this uneasy feeling about them.

One such story involved my grandmother working around the lodge, it was a hunting lodge with a trailer park. While cleaning up one building, I was playing with my toys all by myself. After a while, she moved on to another building to do laundry. She got talking to someone and realized, an hour later, that the last time she had seen me was back at that first building. Rushing back, because it had been an hour and who knows what could have happened, she found me, sitting on the floor, still doing what ever it was that I was doing with my toys, totally oblivious to the fact that she had ever left at all.

I was “in my own little world”, as she would describe it.

Other stories involved babysitters that would all describe me as the best, most well behaved child they had ever babysat. Because I was so quiet. I listened perfectly. I didn’t get into anything, no need for child proofing and I just stuck to my routine like a well oiled machine.

Another time, my grandmother recalls a time a blue van pulled into the parking lot. My father had left me 3 years earlier when I was 2 and yet, when this van rolled in, she thought it might have been him coming back. It was the same model, same size, same blue. Me, being 5 years old, looked out the window and immediately said “oh… that’s not him” and left. Sure enough, it wasn’t.

I could keep going on and on with stories like these that are not.. bizarre. They’re not so very different from anyone else’s stories that I would ever think that they made me different from anyone else. Even though, the truth was, the fact that these stories were just unbelievable enough were what made them such great stories for my family to tell. I just never thought much of them beyond “ya ya, I was quite the kid” and left the spark of unease behind me.

There are also instances, not so much stories, that hold the same feeling of unease for me.

My mother and step-father moved around a lot. I attributed my never having any friends to that, despite the fact that my step brother always did.
I was nearly forced to go into a special school for being too smart at one point, an act that freaked me out so much that I never studied again another day in my life so as to never ever be threatened with being an outcast again.
I never attended a party or group gathering that I didn’t have to and the ones I did have to, I sat at a table, by myself. Even at the prom. I figured I just didn’t fit in. Anywhere.

For many adults, we look back on our lives and rationalize the events away as merely a shyness, or a result of our situation or surroundings because at the time, that’s all we had for a reason. We had no one to talk to, there were no doctors that would recognize it. Besides, we wouldn’t dare draw that kind of attention on ourselves.

My childhood was not out of the ordinary. I was.

I always knew it. But only on a subconscious level. Without knowing why, I never knew how.

Still, I like to think that I turned out ok. My family didn’t treat me like I wasn’t ordinary, they couldn’t have. They didn’t know either.

I don’t think, looking back, that much could have been done differently to give me any better or worse outcome from where I am now.

Still though, as an adult that is now diagnosed, I now have definitive answers, and that makes a very real difference. It could have made a difference then too, maybe.

Either way, difference or not, I think that it could make a difference for others even more than myself in that, if I can raise awareness of what and how this happened for me, perhaps it will enlighten others that have felt the same way. Perhaps even raise awareness for others that work, live or simply know another adult that may seem… different, somehow. Perhaps that little bit of something about them that you can’t quite put your finger on is actually a sign of a diagnosis that never happened.

My child will know. He’ll have a name to give the feelings that he can’t quite describe. And I can only hope that it will help him some day in coming to terms with those feelings and even living with or over coming those feelings.

But there are many who will never know. There are many who do not know now.

I’ve raised awareness for my child. And will continue to do so. But there are more people out there than just my child. And they’re not just children.

I really wish someone would have been there to say “You feel alone, but you’re not. This is why…” but there wasn’t.

I’m not sure I could ever truly explain just how lost that can make you feel. Feeling like you don’t belong is one thing but feeling it while having no idea about the why or the how of it is… you can’t help but judge yourself. And not in a good way.

To have just one person that could have recognized a symptom, a sign or just to say “maybe you feel this way for a reason”… well, I would have really liked that a lot.

I know there are others out there who feel the same way. I want to reach those people. I want you to reach those people. I want those people to have someone that sees them for who they are and is willing to reach out one time and say “I have the answer you’ve been looking for.”

It’s never too late to find out the truth. It’s never too late to know yourself.

Autistic adults might be functioning in society just fine but that doesn’t mean that they’re functioning fine… inside.

Until you know, until you have a name for it, until you have an answer… you can never truly know yourself. You’ll always feel alone inside.

And no one should have to live like that. No one should feel like that their entire lives.

No one should live without knowing who they really are and what they’re capable of.

I know that now. And I want to share that with people that need to know it too.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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12 Responses to Diagnosed as an adult, recalling my childhood, reaching out to other adults on the autism spectrum

  1. Alyssa April 7, 2013 at 8:58 am #

    That is a feeling I understand, some, I think. Not because I ever had the word, I was the first person to come up with “autistic” as a possible explanation for myself by a margin of six years, but because I didn’t dare use it with anyone else, knowing what they did with autistic kids. “Oh, you have a neurological reason that you need to fidget and not look at the teacher? You’re going to be in a special class where the only thing you have to do is sit still and look at the teacher!” So I hid as best I could, sometimes hiding it from myself as well as from everyone else (spent a while in denial after a bad reaction from the one person I checked my suspicions with), until I was old enough that they couldn’t do much to me anymore.
    Knowing, understanding that we are different but not broken, not wrong, just in a world not designed for us, is hugely valuable. Other people knowing can be dangerous and scary.

    • Stuart Duncan April 7, 2013 at 9:05 am #

      Yes, absolutely. What you do with the knowledge is up to you, whether to share it with others or just to know it for yourself.
      People will most likely look at you differently if they know.
      It’s not something you need ever “use” in any sense, but just to know, is a huge weight off your shoulders. At least in my experience.

      (by the way, I use the rhetorical “you” in this response as a way of agreeing with your comment, for anyone that reads it)

      Thanks Alyssa 🙂

  2. Traci April 7, 2013 at 9:32 am #

    My boyfriend had no idea why he did the things he did when he was a kid. After 2 weeks of dating, I knew he had Aspbergers. He was 37 and I knew what was wrong with him. But only because I work with adults with Autism. He has read about it and fully understands and can explain his childhood. We have a daughter together who is now 4 and is showing all the same signs that her dad does. She has already started OT for Sensory and has her ASD evaluation in a few weeks. I love both of them unconditionally and wouldnt change it for anything.

  3. Christoffer April 7, 2013 at 9:39 am #

    A diagnosis is first and foremost a framework, and it is the diagnosis which are rationalizing rather than the surroundings in which the moments of life has been shaped. Of that reason, only people who need the structure of a diagnosis and find it to be the best structured offered may be seen in light of it. Many may behave or have experiences in life similar to that of an autism spectrum disorders; they may even have what it needs to get an official diagnosis, but that does not mean that all of them have it; it just mean that some of them would find the structure of a diagnosis the right thing where others may find alternative preferred structures describing their situation.

    The feeling of being out of place with others may arise in many settings in which there would be no object in understanding it as a diagnosis. When I studied for my Bachelor’s degree, I and my fellow students had a communication problem with the professors. The professors talked a language we didn’t clearly understand, and all our questions seemed to be interpret in radical different way by the professors than we would interpret it. It was a frustration at times and many of our study requirments or exams was in times a confusion. It is clear that we felt this way for a reason; hidden some place in the communication. As a Master of Science I, and my fellow students, has been left in the opposite position of what it was to be undergraduate. Now we understand much more what the professors says, but we have difficulties in communicating this to both undergraduates and those without education. In other words is the communication problem still there, but it has changed its pole, and the reason is still hidden somewhere in this communication. Of all my autistic experiences in life, is it this natural communication problem what has made me feel most out of place and have made most frustration.

    It is important to understand that it is a reason for all our feelings, but as a professional I can never reply to someone: “I have the answer you’ve been looking for”. All I can do is come up with possible answers and then the individual must take the responsibility to choose one of these or choose another preferred answer, in the same way as I did when I signed for my diagnosis.

  4. Tessa April 7, 2013 at 9:54 am #

    Thank you so much for writing this. I have three children on the spectrum, and I believe that I too am autistic. I have always felt like everyone else had a manual that I somehow missed out on, and when I started learning about autism after my oldest son was diagnosed, everything seemed to make more sense. I have never been officially diagnosed, so I don’t often “claim it,” but lately I’ve been toying with the idea of getting a diagnosis, because I think I want to know for sure. Learning about autism gave me a sense of relief. It helped me know that there wasn’t something inherently “wrong” with me. I’m just wired differently. These differences are really hard to deal with sometimes, especially as a woman. I’m lucky that my husband is on this learning curve with me, and he’s not put off by it. In fact, understanding autism has made our marriage stronger. Some of my behaviors that were upsetting to him before are now easier for him to understand.

  5. jillsmo April 7, 2013 at 1:54 pm #

    This is beautiful, Stuart <3

  6. Amber April 9, 2013 at 1:35 am #

    I’ve often toyed with the idea of getting an evaluation to see if I have Autism or Asperger’s. I’ve always felt out of place even in my circle of friends, would take things literally, was often referred to as having “no personality” by my grandmother, am a very visual learner, taught myself to look people in the eye, have my obsessions, take things really harshly in relationships or with acquaintances, can’t hold a conversation with a stranger, and still to this day have mini-meltdowns in crowds or when my expectations of situations are thrown off (though as an adult, I can control it and act like I’m okay, except to those close to me). It would make so much sense if I am. I’ve always been very articulate, but felt like I see the world in a different way. Plus, when my son was diagnosed, those doing the evaluation said they could see that our interaction was different than a lot of the mothers who have kids on the spectrum. They said it was obvious I knew what he was going through. More and more I see how alike we are, which makes me happy because I’m a productive adult and have learned social and communication skills, but it also makes me scared for him because I know how many hardships he’s going to encounter in life.

  7. agear69 May 15, 2013 at 5:29 am #

    Can you tell me what kind of doctor you went to to get a diagnosis. I tried searching for how to get checked out if you’re an adult but I can’t seem to find much info. I would like to find out if I am on the spectrum but I don’t know where to start or what kind of doctor to see.

    thanks,
    april gear

  8. PK September 27, 2013 at 5:25 pm #

    This is very clearly put, and I hear you! I’m not autistic, but I was quite the geek as a kid (and still am 🙂 My son is 6 years old, autistic, strong with language and academics, but challenged in the areas of pragmatic/expressive language and social skills. We’re very lucky to be in a school district that has the support he needs but doesn’t act like he’s “broken”. He’s “quirky”, he thinks differently, he needs to learn some things differently.

    We are looking at talking to his fellow students as the year progresses, especially if social challenges come up – we want them to understand the difference so we can cut down on potential teasing/misunderstandings. I kind of expect him to feel a bit out of place because he DOES think differently, but he’s going to know why and hopefully use his differently wired brain to its fullest potential. I just want him to be comfortable in his own skin, and I thank you for your words as they are reassuring that it’s good to know what’s going on – that knowledge is power.

  9. Luna November 22, 2013 at 5:23 am #

    Wow. I relate to this SO MUCH, and that’s something I don’t think I’ve ever honestly been able to say about another person’s childhood memories! My parents have stories about me being such a well-behaved little girl, the perfect baby, and they often comment on how my son is the same way I was. He’s 26 months old now. After talking about what I thought was normal toddler behavior with a good friend who has eight children of her own, five of which are on the spectrum, she suggested I have my son evaluated by Early Intervention. While reading up on autistic behavior, I realized that there were far more areas of concern than I thought- because these behaviors seemed normal to both me and my parents, it never occurred to me they were an issue! Also while reading I realized I noticed an awful lot of those traits applied to me as well. For the heck of it, I took the AQ test and scored a 44. Then I took the Ritvo Autism Asperger Diagnostic Scale-Revised and my total score was 217! The next time I spoke with my mom, I asked her if my doctors at Shriners Hospital for Disabled Children (I have mild cerebral palsy and went there for biannual visits much of my childhood) ever mentioned anything about autism, and she said, “No, but your guidance counselor sure did!” Apparently when I was 13, my guidance counselor called a meeting with my parents and the school psychologist to discuss their observations and my father reacted very angrily, jumping up and screaming at them there was something wrong with the school, not his daughter, and that I was not retarded, that I was very bright. And I was. I memorized my story books at age two and parroted them back, and when I did learn how to read for real, it was at a much higher level than my peers, college level by 6th grade for example. The school said I was gifted and could skip a grade that year. By 8th grade, I was in a class just above special education with all the “bad kids” and I was failing science, one of my favorite subjects! I was always socially isolated because I was bullied a lot due to my leg brace and shoe lift and my social awkwardness. School was Hell.Anyway, my dad told them off and that was that, it was never brought up again, but my issues only got worse. I started failing classes I loved because I’d avoid taking part in group activities and class participation, and it seemed like these high school teachers talked so much faster, all their words ran together, and I never got the hang of taking notes, I was sexually assaulted and taken advantage of by my peers, and completely unable to communicate about it. I was bullied daily and beat up often, even by boys, especially by boys. I dropped out of college to be a vet tech and work with animals, but once in the field, I lost jobs quickly because I couldn’t multitask. I’ve had 23 jobs in 21 years of working. The longest I ever kept a job was 4 years and it was because I worked at home, made my own rules, and spent my time organizing membership data for an animal rescue.I lost that job 18 months ago due to my tendency to say the wrong thing to the wrong people, plus my boss was making me do PR on Facebook where I was being personally attacked by people who took issue with controversy surrounding my boss that I learned about late and was never given an answer for. I haven’t worked since. Interviews are enough to send me into a meltdown or anxiety attack. I avoid life outside my home as much as possible. And here I am, scared and sad, and unable to connect, and pushing my partner, my father’s son, further and further away with my “rude” tendency to be blunt, and need for alone time, etc. and I was sure I was simply going crazy and I’d be better off dead because therapy was going nowhere for me and they tried telling me I’m bipolar or I have BPD and I keep screaming NO, those don’t FIT, I don’t know what’s wrong, my brain is just BROKEN…and now? It’s like a relief. I’m not broken! I just think differently and process things differently and there are others like me! Now I am hoping to get an official diagnosis. I could care less, really, I don’t need that validation, but I do recognize I need help in certain areas, and now I know there’s help to be had, but unfortunately I need a doctor’s validation to do those things. :/ And as for my son? I’m 99% sure he’s just like me, but if he’s neurotypical, I’ll be greatly relieved! And if he’s not? Well, he’ll have a name for that “different” feeling, and Mama will be there to help him navigate those turbulent waters, both things I wis I had had! To think of the heartbreak and confusion it could have helped me avoid… o_O

    So…thank you for this! It really does feel good to know we’re not alone!

  10. shirley regan February 26, 2014 at 5:25 pm #

    Hi stuart i am different than society i dont talk bad about anyone i would like to help anyone that ever gets to know me thats why im proud of myself.My child hood was very sad i was the one
    person walking around the playground on my own.From the year of 4 – 12 i had no friends a lon
    e.
    I have never had a friend or a best friend my only friends r my sisters because they love me.I have never been diagnoised with autism but,i would like to know. I cannot live the way i am now i am being persecuted because i cannot deal with people.

Trackbacks/Pingbacks

  1. Autism Awareness Month: Diagnosis of Asperger's/Autism As An Adult | eoghann.com - April 7, 2013

    […] Diag­nosed as an adult, recall­ing my child­hood, reach­ing out to other adults on the autism sp… Think­ing back to the sto­ries that my fam­ily tells peo­ple about my child­hood, they seem quite out of the ordi­nary. It wasn’t until my diag­no­sis that I real­ized why that was. […]

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