• Understanding Autism from the Inside

    From an autistic Mom raising four boys (three with Autism) while being distracted from writing, NOT cleaning the house, messing up the budget, and tinkering online when she should be doing homework for her college classes.

    “Academics came easily to me. The rest of life—not so much.”

Does Autism Symptoms get worse with age?

Little_girl_with_a_little_ponytailI was reading an article on WebMD that stated “most teens and adults with autism have less severe symptoms and behaviors as they get older, a groundbreaking study shows” You can read the full article. here

While working through the writing of my memoir, Twirling Naked in the Streets…, I have been contemplating what my life “looked” like when I was a young child with autism, as opposed to how I “look” symptom wise as an Adult. What I am seeing is that my autistic traits were readily visible when I was very young, I disguised them in my teen and early adult years, and in my later adult years (after child rearing and marriage etc.) the traits have reappeared in a sense.

By reappearing I am not suggesting that they ever went away, only that they are more apparent and troublesome today than they were in many days past. My “symptoms” seem more pronounced now that I am older than they did when I was a child.

Of course I have learned to cope with many outside factors which cause overloads and meltdowns sometimes being able to affectively ward them off. As an adult I am more aware of why I am feeling overloaded and irritated because of it, whereas, as a child I would simple meltdown and scream.

However, overloads, overstimulation, sensory issues, are more frequent today than they were in days past. I am surmising that as an adult I have more responsibilities—more rests on my shoulders and the stress of adult life brings about more sensitivities, more stimming behaviors, easier overload, and a more difficult time coping.

I think that what the above mentioned study has observed is the appearance of the teens and adults ability to cope; with their ability to control the showing of their symptoms. For instance, I can try to act “normal”, consciously stop stimming in public (most of the time), because I have adopted coping strategies. These coping strategies may mask my symptoms but they do not make them go away. In fact, sometimes my inner turmoil is fiercer.

If I for instance would just allow myself to not “act normal”, or not stop myself from stimming or banging my head on the wall I know I would feel a whole lot better. I don’t think the study shows our inner selves, only what we display outwardly.

Eventually all the holding in…comes out.

On another note, I’ve noticed that my Aspie Teen’s autistic traits have definitely grown “worse” or more noticeable is what I like to call it as he is getting older. Things that went unnoticed when he was a smaller child are now apparent to not only me, but others around him.

What is you experience? Do you think your symptoms have worsened as an adult? Are your children’s traits showing more as they age?

For me, autism was not quite as internally painful as a small child as it has been in adulthood.

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Jeannie Davide-Rivera

Jeannie Davide-Rivera is an award-winning author (Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism), the autism category expert writer for answers.com, a writer for Autism Parenting Magazine, The Thinking Person's Guide to Autism, and a professional blogger with Asperger's Syndrome. Growing up with undiagnosed autism, and now raising three ASD children gives her a unique inside look at the world of those living with Autism Spectrum Disorders. Jeannie lives in South Carolina with her husband and four sons.

19 Comments:

  1. I think people have become less tolerant than they used to be in the 70s. Where people used to be cut some slack for being eccentric, now we’re bashed into round holes no matter what shape peg we really are. If you don’t fit the mould, there’s no place for you at work.

    • That is definitely true of our children these days too. My boys were chastised for not being able to read their blends (blended letters and words) in preschool at 3 and 4 years old! When I started school, Kindergarten was half day, and if you could take a nap, you were in!

      There were no book reports due in Kindergarten (yes, my oldest, now 13, had book reports due in Kindergarten). Can we put any more pressure on these children?

  2. Your posts are always so timely for me. Just this week I was thinking about why my symptoms seem more prevalent today than even just a few years ago (ie, fluorescents bother me more, my attention span has decreased, my obsessions are more intense but shorter lived, and the list goes on…) and I was wondering if other Aspies sense that or not.

    I’m not a writer, but after reading several of your posts I knew that I needed to process my uniqueness through blogging. But it’s like you’re reading my post content lists. :) My wife has noticed a big difference in me since I started putting my thoughts down. One day I’ll publish my thoughts to the world…when I’m ready.

    Keep writing… I’ll keep reading. You’ve helped me explain myself to me and others in ways that I never could before.

    • Thank you Greg, I’m glad you are reading. I definitely have a long list of things (flourescent and overhead lighting is high up on the list too) that bother me much more these day then they did just a few years ago too. Another big one is my being able to comfortable enter stores, and repair shops to take care of needed business, and TALKING ON THE PHONE. The thought of making phone calls makes me anxious…

      I will look forward to reading your thoughts when you are ready, for now feel free to join in and chat right here.

      If you want to read some more about my growing up with undiagnosed autism, I am blogging my memoir at http://www.aspiewriter.wordpress.com. there is a link at the top…might find some interesting stuff on there. I know I discovered things I didn’t even realize about myself while writing. Writing has been a freeing experience in that sense. I’m always happier and calmer after I’ve put my thoughts down on paper. It helps.

  3. i can see both sides here, because yes, as an adult responsibilities are far greater, the “requirement” to be independent and functioning as a person and adult are more pronounced, and especially if single, working can be a huge stress because you NEED to work, but at the same time you really cant function like everyone else in a majority of jobs… and more.

    at the same time, i also think i am better at “managing” my stresses and anxieties. but like you said, that eventually HAS to come out. so really, even as an adult, the need to release that stress and overwhelming feelings still happens, and the frequency might have something to do with the former paragraph about increased responsibilities, not to mention the social stigma related to not being able to handle certain responsibilities.

    i was recently involved with planning a baby shower for my sister. i quickly volunteered to take care of the invitation process because i LOVE doing the whole addressing mailing type stuff. at the same time, its a financial burden. when all was said and done, i had spent probably around 80$ between the invitations themselves and the postage. when i was at the shower, i didnt do a whole lot. i kept feeling guilty, as if i should be checking in with the other girls (who NEVER went out of their way to introduce themselves to me or anything), and i had to keep reminding myself, no, you spent hours ordering, designing, addressing, not to mention the money it cost to buy and mail invitations in general. im also 5 months or so pregnant, so i have to give myself a break.

    but there was a feeling as if i “should” be able to handle the responsibility of helping “run” the shower. there were at least 3 other girls involved, why did i feel so guilty and responsible? so even without the actual responsibility, i think we sometimes push ourselves too hard thinking that we “should” be able to handle it all… but we really really cant. in the end, after reminding myself over and over, i felt great that i didnt get overwhelmed and frustrated that things didnt go exactly as i had them planned out in my head. thats a relief, and thats new for me.

  4. I’ve been thinking about this a lot lately. The first signs of menopause have appeared and with them a noticeable uptick in the things I struggle with. I’d been noticing some general changes in my energy level and ability to cope with stuff over the last five or so years (including before I was diagnosed with AS) and that seems to have been magnified in recent months. I’m especially struggling with fatiguing easier and just not giving a flying f*%$ about stuff as much. :-) My insomnia has also worsened and I’m less likely to want to make an effort to do social stuff if there’s “nothing in it for me” so to speak.

    Geez that sounds like a big ol’ list of complaints. Well, you did ask.

  5. This post is timely for me too. This theme has been on my mind a lot recently and your comment ‘eventually all the holding in comes out’ really resonated with me.

    After a lifetime of struggling to fit in, to remain gainfully employed and in the pursuit of happiness, I am tired, really tired.

    Sometimes I wonder if this tiredness is the result of my relatively recent discovery of having Aspergers. But then I wonder how much worse things could be now if I had continued full throttle, in blissful ignorance of being Autistic.

    Thanks for sharing this.

    • Tired–yes that is the thing that is the most prominent throughout all the years of trying. And now, many times, I just can’t “try” any longer. I’m done trying, does that make any sense??

  6. As an aspie adult, I like knowing why to a lot of my questions. Does that mean the meltdowns go away? No. I can prevent them in many scenarios, but they are still in my life at 40. My meltdowns still happen. I still scream. I still regret. I still question why my wiring is so obviously different from the NT world. No. Autism doesn’t go away. We learn to act normal. We learn to cope, but it is always there. Are the symptoms worse? For me, yes. I can’t handle music, sounds, lights, crowds and a plethora of sensory stimulations. The overload causes me to panic at times if it becomes too much. The panic wasn’t as obvious as a teen and young adult. I could go to parties, concerts and crowded venues. Today, I avoid those situations.

    • That is exactly how I feel–when I was younger I could deal with the loud crowded venues (for a time at least) now I find that not only does it cause panic, but I will begin to panic and stress long before I get there. Even to the point that I will stress about a get together for a week before it happens essentially talking myself out of attending. The sad part is that at the same time as the situations make me feel completely panicked, being isolated and alone makes me sad and lonely. Sometimes it just feels as thought I can’t win.

      • I think we end up with a kind of PTSD from all the years of trying to cope without (for my generation) any idea of why we were so apart from other people, why we didn’t fit in… When I first got diagnosed, I think at some level I thought: I understand now, so I’ll stop being like that!! Took a while to realise I have to accept myself as I am. That’s never as simple as it sounds.

        • I agree with you on the PTSD thing…I can definitely see how that could fit! Like you, I thought that I could change things once I knew what the problem was finally. But atlas, I cannot and it was a hard thing (something I still struggle with) to come to terms with. In fact, sometimes I am still very sad because I feel like I will be lonely and outside of the rest of the world forever–now that I understand not even I can change me.

  7. I’m on the outside looking in, as an “NT.” It seems to me as though the adults I’ve met and spoken with can better “pretend to be normal” over time, but this doesn’t mean that the symptoms go away. And then if multiple life crises happen, they can fall apart, just like anyone can, and then their “symptoms” can seem worse.

    • That is exactly what I think is happening…and the older we get, the more crap seems to happen to us. My symptoms have definite become much worse after multiple life crises!

      I am also finding that other people seem to bounce back easier, or rather, more quickly than I can. After a trying period of time, I seem to have “symptoms” that linger on seemingly indefinitely.

  8. My daughter was only diagnosed this year as a young adult. Only after the diagnosis was made have we been able to look back over times and events and wonder if actions or behavior were due to this. We do know it was often made worse by lack of understanding or support in schools etc but can’t have been too bad or hopefully someone at school might have said something.. We are going through a time of sometimes just getting on as before, but also examining situations to work out if we can find out how she can manage better not to feel so “other” & find coping strategies. It’s almost a game when she’s puzzling out “Is this just me or is it the Aspie bit”

    • go through that more than I’d like to admit…I find out all the time that things I took for granted or thought was “just me” are really related to my autism. It has been a huge learning experience. As for someone at the schools saying something…I think we are misunderstood more than most realize.

      Granted, I was not officially diagnosed until I was 38 years old–looking back I can see clearly just how bad it was, and how much no-one noticed. I wrote my experiences /memoir about growing up with undiagnosed autism here… http://aspiewriter.wordpress.com/2012/11/07/they-missed-it-they-missed-me/

  9. Isaiah’s World
    What a wonderful world he lives in. no one will hurt, everyone is his friend. no thinks he is different. He wants to help everyone. If only we could be like that what a wonderful world it would be. Age 16 and he wants to be a Vet tech and go to college. Beautiful expectations. attending West Broward High in Broward County , Florida his Junior year is a waste of time. The teachers do not want to assist a well behaved child on the spectrum. What a shame they are allowed in the school system. They don’t want to teach but want the money. We ask for assistance in having our kids become members of society. I ask how could they if you won’t assist. My Isaiah wants to belong.

  10. I am 64 and only found out 2years ago that I am probably AS. Although to begin with it was a relief to have a reason for my problems I have found since that I still have so much trouble coping. It feels like it is getting worse as I get older. I have hardly left the village I live in and dread family events or parties. I hate speaking on the phone which isn’t helped by my increasing deafness. You would think that would make all the ambient noise feel better, but not being able to understand what people are saying is worse.
    My self esteem is on the floor. My periods of depression seem to be more frequent.
    I think that not knowing what the reason was for my problems when young made me try to act normal, to fit in, and now I don’t try so hard as l feel I deserve a break!

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