• Understanding Autism from the Inside

    “Academics came easily to me. The rest of life—not so much.”
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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 is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.

84 Comments:

  1. My grandson was born autistic, diagnosed at 2, nonverbal until 3, went thru public school special ed thru middle school then was home-schooled thru high school. When he turned 18 he developed multiple psychiatric symthoms and was eventually diagnosed with major depressive disorder with psychotic features (anxiety disorder, panic disorder, agoraphobia, conversion disorder–which causes psuedoseizures). He is on zoloft and latuda and we just got a service dog. He is only comfortable at home. I have raised him from birth and not a day goes by that I don’t shudder to think what will happen to him when I die. His condition seems to me to be very slowly getting worse; am looking into services from a regional center to be put in place but they are totally overwhelmed with too many clients and not enough money or people to provide services. An ongoing problem; we just go day-to-day and hope for the best.

  2. GREAT ARTICLE!!!!! THANKS SOOOO MUCH

    Do you think HFA/High functioning gets worse?

  3. I found out 5 months ago my son who was 17 at the time Is on the spectrum… Aspergers.
    I never saw it when he was little.. He met all the milestones but had a few quirky things… Like watching the same movie over and over or wanting to make wool balls everyday.. He wouldn’t carry on when I said no.
    He had friends in primary school but wouldn’t initiate it.
    The problems started in second year of high school… He was bullied… Over something so stupid.. His beautiful red hair. Bullies will always find something. Then his nose apparently was to big for these bullies .. Perfect as they thought they were.
    I had to pull him out of high school because he was missing so much of it.. Always complaining of feeling sick.. Pains in his tummy.
    He finished year 10 at TAFFE then moved into a friend of my older sons garage about an hr from home and worked on a dairy farm for 8 months till he nearly had a breakdown from isolating himself.
    Then all he really really horrible stuff started happening like threats of suicide. He hated himself… Thought he was sooo ugly.. A mutant.
    I got him to counselling and that has helped… He had enough money for rinoplasty but always seems to find something about himself that he doesn’t like.
    I’ve been saying to his older sister that he seems to be getting more immature as he ages???….. I’m soooo scared.
    He keeps saying how unhappy he is in this world. He has no friends anymore. None of them know or knew he was on the spectrum… Not that they should have… Bullies don’t care.
    My life revolves around him.. I’m trying to understand how he feels and trying to help him but I’m walking on eggshells because he gets so upset if I say something he doesn’t like.
    Today he came to church with me and was sniffling his nose.. I kept asking him if he’d like a tissue.. Kept saying no. I thought I was asking in a way that was hinting that he should blow his nose but obviously he didn’t pick up on it…. I didn’t want to treat him like a child and TELL him to blow his nose.
    He walks either real close to me or behind me and I’ve been trying to coax him into walking next to me or in front sometimes.. But it’s not working… So today I said to him… You got to stop following me around when we go out and take some initiative… Walk next to me or in front of me!
    Well … Didn’t I get it… He went on and on and on about how I’m always saying he has a social phobia and he’s being polite by walking behind me because it’s ladies first ……
    I don’t know how to help him.
    I was in the phycologysts room with him the day he was told…. We believe your on the Autism spectrum… It’s a rainbow and your about here.
    That was it!!!!!…… No one asked me how I felt… No one offered to explain what Aspergers/Autism was… I’ve had to find out myself and I’m still struggling to learn.
    I feel like my son has been in a accident and has brain damage… I feel like Im losing who my son was when he was a little boy because he seems to be getting worse… 4 yrs ago he acted like a 14yr old… But now at 18 he acts immature…
    He won’t tell anyone he’s Aspergers… Won’t put it on resumes or let me put it on TAFFE application.
    He won’t talk to me about it so I don’t even know if HE understands Aspergers.

    Am I wrong in trying to teach him to walk a bit more easily instead of stiff?
    Wrong to try and get him to lead the way?

    I’m a single mum. He’s dad was abusive and hasn’t had anything to do with him dice he was 7.
    I’m scared.

  4. Unfortunately in midlife some of us with ASD and SPD go through Autistic Regression. It is very debilitating and we can no longer function as was the case with my mother and myself. Unfortunately none of the Neurologists could figure it out so for my mother there was no help, She was in a state of catatonia as was I when this “Mystery” illness hit me. For my mother who also had diabetes all her problems were blamed on it. I however know better as I do NOT have diabetes and went through seven years of the catatonic state before I figured it out and had it verified by a doctor. I never knew that I even had ASD until this happened as I was born in 1961 and they knew nothing of autism then. There are many more adults suffering then you think it is just Medical Doctors are extremely ignorant of the signs of autism and don’t even consider it when seeing older patients. Until we educate our medical doctors to look for signs they will remain walking prescription pads guessing and probably giving people with this disorder chemicals that can epigenetically cause regression. It is NOT just children that suffer from this but most older adults that have autism will never get the meds they need to be able to at least half way function. My SPD (I have extreme hypersensitivity in every sense) has gotten so bad just riding in a car or movement of any kind, To much light, To much noise, etc causes me problems and I have overloads on an almost daily basis. Autism is a genetic problem that stays with you for life. There is no cure and there never will be one, Just ways to alleviate symptoms. Also we get labeled as hypochondriacs, Drug addicts in search of meds, I have even been called a liar because my neurological disorder is invisible as there is no imaging or other technology that can detect it yet and get misdiagnosed more often than not. Unless you have this problem you will never understand it completely. There are times when it seems I can feel it in every call in my body. It not only ruins the life of the approximated 10% of autistic people who have this severe midlife regression happen, It also ruins relationships and the lives of loved ones that have to see the suffering we go through. Yes my symptoms seemed to fall into the background but I lost many jobs because of down time from overloads I didn’t even know were occurring and mistakenly just thought I was easily susceptible to the flu. Don’t ever think you have it beat because one day it WILL come back to kick your ass. I don’t claim to be an expert but I seem to know more than any “expert” I have seen so far and that is really disconcerting to me. I am tired of paying therapist to teach them about ASD and SPD. Especially since I learned all I know from internet search engines and personal experience.

  5. I just found your blogs… I live with an Aspie step-daughter who was recently diagnosed and now it gives a name to my husbands meltdowns. These article has been very enlightening!

  6. I’ve found that this is true, too. It’s been suggested already and I agree that, for me, it’s simply due to being a bit knackered.

    I never had much energy as a child, I was already pretty burnt out, but as you get older you – mostly – naturally lose even more energy. I must have been pouring mine into trying to be as “normal” as possible. How much more could I have achieved if I hadn’t been constantly punished for being (harmlessly) myself?

    Anyway, the point is that I gradually stopped being able to do it, because I didn’t have the energy to spend on that. On doing my best to tune out annoying noises, on being around people I can’t talk to about things that are interesting but have to talk to in very specific “correct” ways about things that aren’t interesting at all (otherwise I’m a bad person, apparently). It just can’t happen. Talking to other autistic people about all this is an enormous help, though.

    • Thank you Jan for reminding me that talking to other autistic people about it can help! Talking to those who do not understand, care to understand, or think they know the reasons for everything just makes it worse.

  7. I was diagnosed with mild autism when i was very young. I can recall what the testing center looked like and vaguely remember some of the activities/tests i was put through. But one thing i dont remember is being told something was wrong. My parents like many others during this era of autism choose to keep my diagnosis hidden from me as well as others. Looking back now from the age of 34, i can easily say autism was tougher as a child. But that may have been due to other factors like not know what is wrong with you; being forced to do activities or hobbies you have no interest in because your parents wanted to make you socialize. From that point of view, yes autism was harder on me at a young age. As most of my stimuli and activities now adays i choose my self. That being said life still has many challenges. Still at the age for 34 im single, i have trouble holding a job, have yet to move out on my own and my family thinks my interests are weird. From that outlook autism has not gotten easier, its just easier to identify my problems when i find them. I find my self frustrated with life which im not sure is much better than what i delt with growing up; crying alone in your room at a young age because you dont understand why stuff is difficult or why you are different. It seems to be much the same as anyones quest in life, stuff doesnt get easier you just get a little tougher and better equipped for what you know is going to happen. Im still dead silent when there is more than 1 other person around i just simply care less that its happening. Next week i have to go to a team meeting at work, where they will push for me to go a month of training out of town. No one prepared me for dodging these type of things because i will be over stimulated and miserable in a large group for a month. No one prepared me for dealing with paruresis due to over sensitivity to sound and being stuck in a large group for a extended period of time. No one told me how to get around stuff because despite having better numbers, statistics and results than anyone else i work with they still expect that you to do and to need the same stuff everyone else does. Being autistic as an adult is: knowing stuffs your fault even tho it is not your fault vs being autistic as a child is: not knowing you are at fault at all but stuff being your fault. It doesnt get better the rules simply change and some of us are better at dealing with the new rules vs the old or the other way around.

  8. My 2.5yr old son has not yet been confirmed Autism diagnosis but the neurological psychologist does suspect after observing him today. As soon as our insurance confirms her we will be getting the test she suggested to confirm. All I could do is cry after she told us her thoughts. He is definitely speech delayed. Her biggest concern was his unusual behaviors. 1. Delayed eye contact (it’s there but he doesn’t do it first to request help like I guess most speech delayed children do) 2. Possibly sensory issue where he gets excited/frustrated and then lays down on the floor as a means of feeling comfortable? 3. He gets zeroed in on things sometimes. It takes us a few tries to get his attention. What can I do to help? Will it get worse? He’s overall such a happy sweet kid, it’s breaking my heart thinking something is “wrong” and not being able to fix it. I just feel helpless. Looking for any guidance.

    • This describes our third son to a ‘T’. He was diagnosed a few months ago and we got him into therapy (ABA, OT, Speech), but these seem to make him worse in some ways. He zeroes in on things still, which is fine, but the tantrums in stores and restaurants has gotten so bad we can’t go out much. He lays down when over stimulated and what we once hoped was speech delay seems to clearly be autism. I’m just surprised and dismayed that his therapies are exacerbating his symptoms. And of course, I worry so much about who will care for him when I’m gone. That’s probably the worst of it.

  9. I think my 30 year old daughter has Aspergers. I’ve thought it for a while now but have just returned from a holiday with relatives with a broad spectrum of ages from 1-65 and it wasn’t particularly successful. Although she is now in the happiest relationship of her life & engaged to be married her anxiety and stress levels appear to be escalating. I don’t know how to broach the subject with her as I think she will react badly. All I want is for her to feel happy and safe – if she could talk to someone who understands how she is feeling, how her brain is wired and can help her with coping mechanisms and how to deal with her thoughts and moods I hope it would help her to be the wonderful girl she is. How can I get her the best help?

  10. 70 year old male with Dx of PDD-NOS & ADHD 6 years ago by a Neuro- Psychologist.Some symptoms have gotten more pronounced & aging has turned down the flame on others.
    I don’t care if people think i am mute at times & right now i am to tired to figure out much else other than my impulsive acting out is much less although occasionally my mouth has to speak when it should not. Does not not make me popular with my wife but the cat does not care.
    Am also 30+ years clean and sober which at times makes life more bumpy.
    Do work out or walk 3-5 miles 7 days a week. This helps the coping with people & the world. Jerry Bourne

  11. Maybe it’s just the times we are living in. Since the global finacial crisis, things haven’t been as good for a lot of people. There is a lot more worry these days amongst a lot of people. For example, here in the UK where I live, there have been a lot of changes and there are probobly more to come; and it hasn’t been good for a lot of people, and it has made living with asperger’s syndrome a lot more of a challeneg for me.

  12. I have Asperger. A higher foucnting Autism but I grown to realized as I age more, more of what I should have done when I was little is coming back to me, and worst. I am having one right now and like you said I am aware on why I am feeling like this but my head gets so clugd and I just have no control sometimes. I just want to know a simple way on how to get out of this seance. Thank you.

    { P.S. I am a seventeen year old girl whom going to turn eighteen soon and I just feel like no matter what I do it just keeps coming back. I need a answer so when this does happening aging I would know how to deal with it more better and faster }

    • Hi Kayla,
      I am sorry you are struggling. I do have to tell you that it does not go away, and it is something we need to accept and embrace about ourselves. I know, so much easier said that done, and at nearly 43 years old I still don’t have it all figured out. Some things clearly get better, and somethings I am noticing are getting worse as I get older. Overstimulation, sensitivity to noise, and lights, and STRESS is so much worse. But other things are better in that I am not trying to “act” normal, or fit in any longer. My favorite Dr. Seuss quote, “Why fit in when you were born to stand out?”

      Be yourself, care for yourself, and STAND OUT!

  13. My 18 yr old daughter with autism gets worse daily. She drops her pants and touches herself and puts her hand down her throat to self induce vomiting. Today she took her pull up off and deficated in my bed. How much can one person take? She is only allowed to go to school 16 hrs a week

    • I am so sorry you are struggling, Donna. And wish I had more to tell you, unfortunately my experience is limited in the area. My non-verbal boy is only 3 years old, and I don’t know how much he will progress just yet.

      I will say that I think there should definitely be more supports than just 16 hours a week, good grief. The systems in place really suck, especially when it comes to adults on the spectrum. I am a firm believer in behaviors are communication, even when we don’t understand it, or when it is frustrating, and overwhelming. Of course taking a step back in the midst of the madness is not something I can do, and I think we all struggle with trying to distance ourselves and think about behaviors and what they could mean. But I wonder if she is trying to communicate something, convey a message. Clearly in some of these actions, she is–is there any home health aid type of help in your area? Perhaps if she is only allowed to go to school 16 hrs per week, you can find supports in your home? I know this hard too, and many places do not offer such services. Adult services for autism is an issue that clearly needs addressing.

      I wish something more helpful to say. Being Mom is hard, and you are doing the best that you can.

  14. Since I can remember, I had trouble fitting in…I just thought I was wired differently, this year by chance i was researching dyslexia and autism for my boss, and tears came streaming down when I read about Asperger’s syndrom…usually around my birthday I have a meltdown and go into depression, but I usually bounce back, this year I’ve been having it very bad, I realize I don’t cope as well as I have in the past…I have a 7 year old daughter and feared that there could be something deeper and may impact her adversely, worst I feared that may be she inherited it too..so i went in for a diagnosis, off the cuff, i told them that I suspected autism and specifically aspergers..they laughed…and said may be OCD, I agree definately OCD but also aspergers…told them that usually, aspies get misdiagnosed but I went through the long process of analysis and test and now they agreed its autism and will do more test for aspergers…I am now over 40 years old and you know what, the battle is getting tougher to win, I sometimes just want to surrender because i am so tired of fighting it…but I tell myself, I have to keep it together until my daughter is old enough to fend for herself, also I need to make sure I help her because I suspect she has it too…one of the therapist said, that after all these years I have coped well and it should be easier, but she is wrong, i feel so close to the edge sometimes and wanted to know if this gets worse with age…I am grateful to G-d that I found your post and the comments by the others are also very comforting, i am relieved that I know what exactly I am up against as opposed to before just being the black sheep and feeling ostrasized but the challenge feels monumental each time I have a meltdown….best wishes to all out there and I look forward to more posts as i travel this road.

    • Hi Jes,
      I am so glad you stuck with your own gut in regards to evaluation. I too had those flowing tears when coming across Asperger’s Syndrome while researching for a different project! Adults, especially females, often get misdiagnosed….repeatedly. I did!

      The battle is so huge some days that I feel like I am going to come right out of my skin and just explode and bitty pieces of me are going to be splattered all over the house! Other people don’t get it, they do not understand and it is so incredibly frustrating! And the THERAPIST, holy moly do not listen to them! How the heck would they know? No it should not be getting better by now? The SHOULD NOT EVEN BE USING SHOULD BE…who says, anything “should” be?

      Somethings get better, yes. Somethings get worse…and most things cycle. What is better now, can be worse next week. And dear god is it frustrating! I can tell you without a double my sensitives are WORSE…noise tolerance especially, which is real hard since I have four boys on the spectrum, a husband, two dogs, and two cats! It is never quiet! Odors are bad for me too, did I mention 4 boys, 2 dogs and 2 cat??? I feel assaulted and overwhelmed most days before making it to the coffee machine..something always flipping SMELLS!

      But, the annoying things about my Asperger’s really are a blessing and curse. My heightened sense are my superpowers, but my curse too-clearly. My focus, hyper-focus, obsession, whichever word you chose to employ enables me to do and learn things that others can not, and at a much faster rate. I just cannot do ANYTHING else at the same time! So to the exclusion of everything, including eating, drinking, working, taking bathroom breaks etc. I can do AMAZING things, I know this. But there is a PRICE.

  15. I am 65 yrs old and my traits are more apparent then ever. I seem to have heightened sensitivities, I prefer even more alone time, I simply can’t be bothered with people. where as before, I would argue the point, all I want is peace now.

    • Oh yes, peace. How lovely the sound!

      • Peace sounds very good to me. Last year at age 75 I suddenly became aware that I had high functioning Asperger’s and also that my entire family had it and has it. Two sisters are retarded big time and it’s getting worse. i am now being treated for cancer. I’m not strong anymore and I want to give up. At least, I think that my daughter and grandson do not have any ASD and I’m grateful for that.

        I cannot stop thinking that my mother hated me. So it seemed, anyway. My whole life. I have nobody to talk to about this.

        I think it will take 100 more years for people to help adults with ASD or Asperger’s. I have not been able to find any help.

  16. I dont tend to comment on others blogs, but I have the dubious honor of being fresh out of the 18-25 stage of life, with clear enough memories of middle and high school to perhaps provide insight on why people seem to think we are getting better as adults.

    Honestly, the first thing that started to force me to change outwardly in my behaviors as a child was this inexplicably heavy weight, this pressure from outside to be like them, and this feeling of being forced into isolation when I was not.

    I didnt want to be alone, which, in retrospect is probably the single most common thing I have ever heard from others on the spectrum. So I changed the way I behaved in public, forced my mind to handle my stimming and redirect it into smaller fidgets that were both less helpful and less noticeable. This process of build the mask that people in public get to see both serves to make me feel more isolated, and let me participate in the real world without being treated like I am different.

    Anyone who really knows me, knows its an act, but for the rest of the world watching me transition from child to teen to adult, it looks like my symptoms have vanished, at least the ones they could see obviously.

    My symptoms though, the ones I live with in ever moment, actually seem to get worse. My ability to cope with my hyper sensitivities is declining, which I suspect is in part because my mind is becoming less flexible, less able to split the processing power it so desperately needs to do that, while still maintaining my mask.

    I would even go on to say that if anything my dissonance with social cues is getting more intense, as I get older, and those cues continue to get more complex in the world around me, I find I am even less strictly able to handle social interactions without having to draw them out to give me time to process body language and facial expressions.

    Do we get worse as we get older. I dont know If I would say that.

    But the brain gets less flexible, needs to be more focused, and the methods for coping that make us look normal start to cost more than we can pay, and either we prioritize looking normal, or coping for ourselves. If we do the former, our inner symptoms get worse, cause we are not paying them the right amount of attention. If we do the latter, our outer symptoms tend to reappear, but we are generally in a healthier place physically and mentally, provided we have since found a place for ourselves irrelavent of the way society makes us feel.

  17. I have a child with autism. He is 4 now. He is still non verbal and it seems that his symptoms are getting worse. My question is Will the symptoms keep getting worse. I worry so much for him as he gets older…..any info would be greatly appreciated thank you.

  18. I wish the “outside” world would adjust to autistic behavior. We can only make comparisons against what is the “norm.” I think its time for a new norm. Why should anyone have to adjust? I see the beauty in my children and the problems are only considered problems because of the way the world works. Isn’t time to change the way the world works? Autism is everywhere in some form.

  19. Yes our ability to cope with autism can improve as an adult, however for some of us as the brain enters mid-life neural activity slows down. Cognitive bandwidth narrows and those coping mechanisms sometimes begin to fail. I’m 53 and in the past 4 years my coping mechanisms have declined. I am one of the lucky ones, self-sufficient, have a house, car and keeping my stemming private. I started medication for the first time a few years ago when I couldn’t cope anymore and this gave me a small reprieve. But everything is becoming too much. Light, sound, temperature, and social interactions are becoming impossible. Regular issues at work, Meetings, gathering, parties take days of quiet to recover from. Starting to loose track of bills and medical insurance and now dealing (jumping through hoops) with getting an “official” diagnosis just case I need disability. Which I took pride in never needing. Had a burnout 14 years ago and was homeless for a few months, I don’t think I can recover if it happens again.
    Thanks for the great article. There are a lot of people like me out there.

    • Hi Anders,

      You make a great point in your post as I am asked quite often what the point of seeking a diagnosis in adulthood could serve, especially when we are making it, muddling along most of the time, and most help is only available to children. This. is. the. reason. It is because we do not know what life is going to throw at us in the future, AND we have no idea how our bodies, and brains are going to react later on, and if we will be able to get any help. Without a proper diagnosis there is no help out there, and that can prove very difficult!

  20. I think they do get worse with age but our ability to cope with them improves also. But, the article title should be, “DO autism Symptoms…” and not “DOES autism symptoms…”

    Hope I didn’t offend!

  21. It’s weirdly comforting to hear about all the other experiencing gut issues because that’s one of the biggest issues I experience now as an adult. I have been able to develop coping methods for identifying and avoiding stressors before they cause a meltdown or panic attack but there are many times as an adult where I have to push through and it’s the IBS stuff that gets me in those cases.

  22. ive gotten worse, and better in certain ways.im 16
    bad: i can barely sit down in class,verry verry jumpy,can barely a talk with somebody without my head wanting to explode, i isolate myself 70% of the time, hardly have friends. always got that wierd feeling when talking to somebody,ideas always flying in my head from left to right, hate light(usualy in the dark)feel more of a robot,meaning i wont be as emotional as i used to(i feel like a robot, as in i do not feel anything what so ever).

    good:not as hyped as i used to be,learn way faster than i used to,can say a sentence without swearing, dont have that much of a tendency to chew on something when im being looked at,never tried to hang myself again.dont carry a knife with me everywhere i go,

  23. I’ve been reading through the comments here, and wondered what can be done – if anything – by others to help you through the attacks (is that the right word) or hard periods?

    We recently found out that our son has autism, at age three (or a little before). We have been lucky to find a great kindergarten for children with autism, and he thrives there in a way, he obviously couldn’t in his previous kindergarten. We do see some improvements, but he still doesn’t talk, besides few words that are not pronounced clearly. It will probably take time, but I’m sure that it will come.

    I have of course thought a lot about his adult life – besides just the here and now – and what we can expect. I’ve seen a lot of interviews with adults with autism, who I would never have believed to have autism, if I’d just met them. But I can imagine that there are things, situations, where it takes over in some way or another. How much help have you gotten from your parents, and which advice can you give me as a parent?

    Thanks:)

  24. Yup. Spinning in circles while your head throbs in sync with the noise around. Like a very demented rock band drummer playing on your head. Noise overload is so very annoying, but at least it’s consistent I guess. I’ve heard a lot of us have strange reactions to pain medicine. Usually along the lines of it being the same as taking a sugar pill. Nothing like sensory pain and it refusing to be numbed.

    It is very interesting at how many autistics have issues with the gut. I almost expect to hear of it coming out in a future edition of the DSM as a potential checkpoint. Some get that awful Celiac thing or another autoimmune problem. Some get a full IBS diagnosis. And then there’s the sensory-induced stomach issues. Probably more things, but that’s the main ones I’ve heard so far. Why must our digestive tracts hate us so? We feed them delicious things and meet their high demands to satisfy their pickiness, and yet they get upset at us anyway. Such an ungrateful set of organs!

  25. Worse. Definitely worse. When I was a kid, all I had to deal with was some picky eating and some mild sensory issues like the evils of shoes and female clothing. No meltdowns, no shutdowns, no aggravated sensory problems, no anxiety. Just my weird little self indulging in pizza, chicken nuggets, and hotdogs while running around barefoot in an oversized shirt.

    Adult life? My sensory issues are so much worse and all seem directly tied to my stomach, unless it’s noise then it all bangs around in my head. I get to experience sensory overload now that I have a more complicated and busy life. It’s harder to concentrate. I’m having greater trouble recognizing people, especially if caught off guard like a chance meeting in town. And always the pressure of being told “it’s not enough, do more, try harder.” Even by the ones who know I’m autistic.

    If an autistic kid started off with severe symptoms and they appear better as adults, I agree that it has to be superior coping mechanisms that come with age. Unless they are fortunate enough to have the reverse of my situation where their symptoms actually do get better with age.

    • Mine has definitely gotten worse with age! Especially the sensitivities, and like you, yes, they are directly linked to my stomach (IBS like issues, insta-vomiting on smells, etc.) The noise intolerance has grown to gigantic proportions too and if it is noisy (as it always is in a house with four autistic boys) I cannot concentrate. I can’t think, I can’t hear, can’t make out individual words, and feel like I am spinning in circles-and not in a good stimming-like way either.

  26. I was diagnosed with Asperger’s when I was twenty-six (two and a half years ago). My symptoms seem different from those of the others in this forum. Before my Asperger’s diagnosis I was known to be OCD for maybe eleven years, but I’ve been prone for at least as long, when “thoughts” go through my head, to have attacks where I make bizarre gyrations and noises– involving everything from strange expressions and hand movements to “prancing” on my tippy-toes and humming, with the symptoms often worse at my time of the month. I also often pick my scalp, lips, and nose when nervous or even just distracted, and I easily lose focus– part of the reason why I still have only a learner’s permit for driving. I also am very bad at paying attention to people and things around me, and have subpar social skills. Nevertheless, I did very well in school and didn’t get on medicine until I was sixteen, although therapy never helped much. I stayed stable until my early-mid twenties, when my symptoms got worse and my doses started rising. I have a Masters Degree in English, but I have trouble looking for jobs (part of the year I help score tests) and live at home. I’m wondering, could I have tritchotillomania (obviously, there) and Tourette’s? I’ve never been diagnosed with these things.

  27. Oh god. I’m only 23 and already experiencing a lot of what you’ve described here. For the past year almost, it’s felt like my sensitivity and overloads are getting increasingly worse. Recently I had a panic attack. Even as a child I never got this overwhelmed. What makes it worse is that I get overwhelmed by most people’s voices. It’s gotten to the point where I almost can’t be in public anymore. If this is something that increases in your middle age, does that mean I’m only going to get worse from here?

    • Hi Julia,

      It has been my experience (which is only mine and everyone is different) that the periods of getting better and worse seem to come and go. In my early-to-mid twenties, when I got married, and had a child, things seems to get worse proportional to the increasing responsibilities and stress. Things tapered off somewhat in my 30’s but then got much worse to the point that it made me seek REAL answers. Things go better, than worse, than better, than worse. It has been an annoying and frustrating roller coaster ride for sure. My sensitivities seem to be overloaded now in proportion to the amount of stress I am under, and directly related to my activities. For example, when I am working and am interrupted many times (happens A LOT) then it seems like my irritation level grows with each interruption, and my sensitivities heighten, which makes the next interruption more likely and longer to recover from. I am not sure how or if I can combat this problem at the moment, but all I can do is work through it one day at a time…sometimes one moment at a time. But take heart, you WILL find your niche, where you fit, and your way of coping.
      BTW I don’t think i could ever work outside my home again…too overwhelming and dealing with people everyday, and needing to dress…no. Working from home works best for me, even if it drives me bonkers because I am constantly interrupted. At least I am interrupted in my own space.

  28. Something I’ve been wondering about: do other Aspies react well or badly to ASMR type noises & sensations? By which I mean whispering, rustling, clicks, smacking lips, riffling pages of a book, that kind of thing? In some people it creates a weird kind of neural response like a shuddery some walked over your grave kind of thing. Some people absolutely love it & go out of their way to seek it out, while some people absolutely hate it much like others might hate nails down chalkboards or cutlery scraping on earthenware. The way you describe your sensitivity to (e.g.) fluorescent lights reminded me of this.

    • OMG I do!! It drives me crazy, and I think that at least one of my children seek it out! For me, it is definitely that nails down the chalkboard thing when I am extremely sensitive, and other times more like that someone walking over your grave weird sensation, but there is never NO sensation. I want to say as I get older, the nails on the blackboard is becoming more severe, and I become overwhelmed much more quickly than I used to.

  29. I’m having a hell-of-a-time with middle-age autism. 🙂
    I have just been diagnosed at 44 after having increasing difficulty managing life and relationships over the last 10 years. Funny or not, I was able to manage more when I drank more as a younger person; I started drinking very early in life. Now that I don’t drink to socialize, I have had much more difficulty. I also spent 5 years in South Korea. It is much easier to fit in with ‘not fitting in’. 🙂

    I now realize that I spent 20 years copying others’ behaviour, especially once I could see that I was different and after decades of this I am not sure who is inside of here. These days there are occasional melt-downs, I stim, flap, make odd body movements, rock surreptitiously. I also wear hats, sunglasses and ear protection at home, and the feeling of calm that this creates for me amazes me since I spent so long in agitation.

    About 10 years ago I started having difficulty keeping friendships and I had no idea why. My solution was to withdraw. Further difficulty arose 6 years ago in my late 30’s, after a renovation at work which went acoustically-open with intense lighting. I may have been equally sensitive before, but the bright, loud, change was/is very hard on me and my productivity dropped.

    That said, before I started at this office 8 years ago part time, I always made sure to control my own time and had a more varied work-week as I was self-employed. I feel strongly that the ‘stable’ 9-5 cubicle world is not suitable for Aspies, and now that I’ve been diagnosed, I’m trying to establish what would be suitable accommodations to ask for from my employer.

    • Accommodations are an extremely personal thing, and what works for me may not work for you. Personally, I agree with you, I could not do the 9-5 thing any longer. I was never any good at working on other people’s schedules, and it seems anytime I need to somewhere at a certain, I panic, and wind up somehow being late. Then of course, I am frazzled for the whole day because I started in a whirlwind. So making my own schedule (and now working for myself) is really the only way for me to be productive. The other thing that I find it impossible to work through are interruptions. That is why I am having a hard time being productive and getting as much as I need to accomplish done while working at home with four boys! LOL Being interrupted drives me bonkers! It takes me forever to transition from one thing to the next, so when I am interrupted, it takes me a minute to break the shock of the intrusion, and than handle whatever caused the interruption. By the time I get back to what I am doing (even if the interruption was only momentary) it takes me a very long time to recoup, rethink, remember what I was thinking, and what I was doing..what I wanted to say/write/look-up etc. Needless to say, on this same note, I cannot work in ANY environment where I need to answer the phones! Ultimate interruptions! I know others that these things are not as troublesome, but for me they are crippling. OH yes, and noise! Noise, bright florescent lights, people talking…yes, I just stay out of offices. LOL

  30. This has been quite an insightful post. I’m 32 and recently been diagnosed. Reading about other people’s confusion makes me feel a little more comfortable in my skin again but simply can’t shake the confusion that’s going on right now. This has been the weirdest year of my life lol

  31. My son was diagnosed at three. We immediately immersed him into educational opportunities and he progressed well through middle school. High school placement was unacceptable so we decided to home school (father is a high school teacher with a master’s in educational administration). He just turned 18 and has developed a neurological problem (waiting on doctor to diagnose) where he constantly shakes his right hand and it sometimes goes into whole body movements. The last few days I have noticed things that make me wonder if the autism is progressing into something more. He seems very nervous/anxious, confused, worried; his speech seems to be deteriorating and his frustration level is really high. Has anyone else experienced this?

    • Hi Terri,

      My oldest is 16 now, and I find that he displays much of what you describe here. It does seem worse in some ways now then when he was younger. I also have realized that for myself, I can have bouts of whole body movements, and they can be linked to my anxiety. It is a viscous cycle at times, as I have trouble distinguishing if the behaviors arise from my heightened stress levels, or if the behaviors themselves are heightening the stress. I think it is the former. I KNOW that I feel my “symptoms” worsening when I am stressed, and sometimes, the reason for the stress is not even easily identifiable. As life demands more, ability to cope diminishes unfortunately.

  32. While years late, glad to see I’m not alone. I was also diagnosed quite old, only when my son was diagnosed. I remember patterns & strange noises when younger, lots of spinning, having to “undo” everything I did (counting my spins & spinning in reverse the same number, etc). My mom just said I had habits. I “grew out of them”. I learned to cope in the world, always strove to understand normal people, but ultimately gave up. Never had real friends, nor cared much for any. I’m much happier now, but I do notice my symptoms returning in force, now that I’m pushing 40. I rock more, my hands do funny things, I only shop at night, and instead of strange noises, I do strange breathing (which is quieter, sometimes). I need earplugs when daily routines suck away all my precious “quiet”, but only then, only when it’s gone. But despite all this, I’m HAPPIER. I still keep autism a bit of a secret. Only a few people know. Those who wonder, what do I care? I can do just fine in the real world, so long as I meet my needs (and I have no desire for anyone to meet them for me). And when you talk to people in public wearing earplugs? No one wants to point out or ask why you’re wearing earplugs. It’s like I’m invincible. I can do anything, and they’re afraid to point out the obvious (which is the first thing I would do in their shoes).
    But I guess, maybe I only THINK I’m happier? I keep looking up stuff that confirms I’m not alone, yet I’d prefer to be alone? Or maybe, it’s nice to know that others do this stuff, but I don’t actually want to talk to them. Just know they’re there. Hmm, this requires thought.

  33. I stim, I don’t make much eye contact, I prefer to answer accurately rather than fast. Anyone who has a problem with that should be treated the same way racists and homophobes are.

  34. Pingback: Does Autism Symptoms get worse with age? | MyMedClinic

  35. I would definitely concur that the outward signs of autism can increase with middle age, as I have experienced it myself. In fact, it was changes in my own abilities and behaviors that ended up leading me to an autism diagnosis in my forties. It does appear to me that, among autistic adults, there is plenty of corroborating anecdotal evidence of this. Some call it “Aspie burnout” or “Aspie regression”, but either terms describes what many middle-aged Aspies know well: namely, the decline in some abilities, growing sensory issues, and increased difficulty in managing outward signs that comes eventually with stresses in life. I even tried starting a discussion on a large Facebook Aspie group a couple of months back, asking if others had experienced this, and I received a number of interesting and affirmative comments.

  36. Hello. My 27 month old grand son was diagnosed with Autism today. He does a lot of Stimming, like turning in circles and making consistent irregular full body movements. He is delayed in his speech but is speaking about 10 words. He understands simple requests like, “lets put your shoes on.” “Want to go for a walk” . I would like your thoughts of when you think he may begin using more words. With professional help, what does his future look like? Thank you in advance!

    • Hi Nancy,

      All of us on the spectrum are different, not unlike our Neuro-typical counterparts. Our futures, I truly believe are only limited by the limitations and expectations we (and others) put upon ourselves. When my, now 4 year old, was just over two, he didn’t have many words. He received speech therapy, and ABA, Early Intervention, etc., and now I cannot get him to STOP talking–ever. He talks from sun up to sun down. I do find that many times a delay is just that…a delay. My eldest did not have a speech delay, but a complete regression at 2.5 years old. He too, regained his speech, although he has articulation issues. Currently, my 24 month old has NO WORDS, he is completely non-verbal, not even making da da da, or ma ma ma sounds. I am concerned at times, but believe he too will catch up, but only time will. Currently Early Intervention services works with him 2 x per week, as does speech therapist so we are working on utterances–no luck so far though.

  37. I have never been diagnosed and only found out that I have autism when my 3 year old son was diagnosed. I have always had such a hard time talking to people and making new friends. I feel like my heart is going to beat out of my chest when i have to meet new people and I can’t maintain eye contact for long. I hate even going grocery shopping. The only way I make it through is to look straight ahead and not look people in the eyes. As a kid I remember everyone always asking my sister what’s wrong with your sister why doesn’t she talk to anyone. People sometimes said I was rude or stuck up because I didn’t talk much. My coach in high school nicknamed me whispers. I used to walk through the halls of high school staring at the ground so I didn’t have to make eye contact. My whole life I wondered what was wrong with me and I would try so hard to act normal. The best thing to ever happen to me was my husband, who accepted and loved me the way I was. He was the only person other than my mom and sister that I every felt like truly accepted me for me. I felt safe when I was with him. It was like this huge weight was lifted off of my shoulders and I didn’t feel anxious or nervous at all as long as he was by my side. He died almost 2 years ago when I was 5 months pregnant and now I am left alone to raise our non verbal autistic 3 year old and 16 month old. I haven’t really answered your question, I’m sorry. To be honest, this is the first time I have ever really talked about this. So yes, I feel that my symptoms are worse but I have adapted and am more able to pretend I am normal by observing how normal people act and copying them. I have to consciously make sure I look people in the eye longer than a few seconds, smile when I otherwise wouldn’t cause it feels awkward and weird to smile for no reason, or make small talk (hi how are you. Sure is busy in here today!, etc). I rarely go anywhere and the only reason I do is for my kids. I try and socialize them as much as I can stand. I hate that they have to suffer because their mother is this way. All I can do is hope for the best and continue pretending to be normal. It is just such a struggle, especially being without my soulmate. How can I teach my kids social skills when I don’t have any?

    • HI Tara,

      I am so sorry for your loss. I cannot even imagine trying to do this on my own. I too, even with my husband by my side, do not go out much, and I am very uncomfortable “socializing” my children since making play dates is out of the questions, and I do not feel comfortable sitting in the park and talking to other parents to I do tend to avoid those situations. I feel panicky and want to avoid the boy’s soccer games and such but I cannot so I go and try to sit away from the other parents so no one will speak to me much.

      On “acting normal,” honestly, I’m done with it! I’m at the point in life where the heck with the rest of the world, I am going to me and if they don’t like–oh well! I shouldn’t have to act to be something I am not just to appease others–why don’t think just sometimes try to act like me? Do you know what I mean? And social skills…well NT social skills are overrated. People make small talk, ask you how you are doing, when they couldn’t care less about how you are doing. I take a look at the world around us and think, “dear God don’t let my children learn THESE social skills.” I love that we are kind, and honest, and compassionate, and caring.

      Why try to fit in, when you were born to stand out ~ Dr. Suess

  38. My Autism is getting worse then when I was a child, that my family is afraid to leave me alone.

    • Many of my symptoms are “worsening” with age…mostly my sensitivities and how quickly I am overwhelmed. I seem to need more alone time that I used to, and my speak fails me when I am overload, upset, or nervous. I am increasingly avoiding the telephone–as I do not want to talk to people, make phones to take care of business, and the such. Luckily so much can be done via email these days that it is helpful in negating the whole not be able to speak on the telephone thing.

  39. nuestraherenciaco

    Thank you. I have to say that I agree 100% with you. Things for a while seemed to be going well, but as time has passed, without a doubt, things have become much worse. Sadly, society as a whole cannot really deal with our differences and we are made to hide more and more of what we are feeling…eventually, it does come out. It comes out in our health or in our mental well being.

    • You are absolutely right, it does come out in our health and mental well being. I am finding too that as I grow older I am just less interested in hiding my true self too….too tired to pretend.

  40. I am a bit late to this party, but I would like to add my thoughts: I attribute the significant worsening of my sensory issues (particularly to fruity smells) over the past decade to the fact that the world has gotten much more intense, and as a person with autism I have not been able to acclimate to it the way NT’s can. Fifteen – 20 years ago I didn’t have to worry about someone sitting next to me on the bus wearing clothes washed in mango-scented detergent because it hadn’t been invented yet. Today it causes a meltdown. As the rest of the world gets used to and therefore no longer notices highly-scented products, marketing companies are pressured to come up with stronger and more intense smells in order to keep selling products. I’m caught in the fallout of a competition to make the smelliest detergent/deodorant/hair products/candy/room freshener/feminine hygiene products on the market, and I don’t know how much more of it I can take.

    • I feel your pain im not quite as senstive to it but it also gives me allergy attacks and the only tablets that control the allergies I get also put me to sleep, any time of day if I don’t take it I can’t breathe, break out in a terrible rash and feel like death. Those body sprays give me asthma. Natural fruits do not bother me unless they are over ripe and going bad. I hate cheap stinky sweet smells but I like the deeo woody ones and resins. Which is interesting because I hate also high pitch sounds it isnt the vollume it is the pitch/frequency but I can fall asleep next to a bass speaker. It has become more pronounced with age and I have things I am sensitive to now I did not notice when I was younger. My coping skills are worse, I have co existing mental illness getting worse, PTSD from bullying that is still going even from my own family truly sadistic stuff. Always loved animals and gardens though and natural things only time I feel any peace is when I am with one of my ponies or dogs or talking to a bird or planting something. I never wear gloves I enjoy touching the soil the leaves bark. I have never been diagnosed which has made it even harder as a kid I was just a naughty difficult strange child getting shunted around from principle to teacher who would hit me to councellors to a psychiartrist. Hitting me over the head hard was considered acceptable and apparantly still is. I can’t keep up with technology and I have a morbid hatred of smart phones.

  41. Genisa, that sounds awful. I think you may need to sit down with your people & let them know how you feel. Educate them on how things are for you. If they’re still the same 6 months on, leave. You deserve better.

    Point of order though – not all of us Aspies get unconditional love from our parents, even if they’re on the spectrum themselves. I was always being unfavourably compared to my next door neighbour by my dad. Sometimes it’s really hard to love a kid who always flies off the handle, hates crowds, & often takes things the wrong way. It doesn’t mean we don’t deserve to be loved, but it can be a struggle at times.

  42. as an adult, life just plain sucks. at 39, mom of 2 boys both on spectrum, I can’t advocate effectively for my sons needs. I am horrible at being a “wife” to my husband. No one listens to me. No one really cares. If I disappeared tomorrow, I really don’t think anyone would notice. Life is so much lonelier as an adult, as you no longer have parents who love you unconditionally and would help advocate for your own needs.

    • I am sorry Genisa that you feel this way, and I can relate to much of what you are saying. Being an adult is definitely harder in my opinion especially in the lonliness department. I see so much of myself in your comment here, especially feeling that I was horrible at being a “wife” to my husband–especially in the traditional sense, meaning how society puts the gender-role expectations on women (and men). I am terrible at tradition “women things,” keeping house, socializing, and the like. It has taken so long for my husband to understand too, that I am not aloof, or uncaring and unloving, I just need space and am not very “touchy feely.” I can appear to be insensitive at times, or even lack intimacy…but that is just the appearance. Unfortunatley for me, I did not have parents who advocated for my needs and so I do not “miss” that…I can say that I do have much difficulty advocating effectively for my children as well. I tend to not want to talk to others, pick up the phone, and HATE attending school functions or meetings. I really have to make myself do it, and many times I simple do not. I say all this to tell you that I do know how you feel. You are not alone, even though I know all too well how it feels that way many times.

      • The worst things I hear are like, i someone is autistic/aspie they have no feelings which is BS. Or that because I get bothered, upset or feel some hurt I must be ‘fine’? ???? or you are 33 why don’t you get yourself together and grow up!!! I am not a parent never will be, I cannot do the things that would require me to get pregnant in the first place because of the nature of my sensory problems and relating to others. I havnt had a relationship in 10 years but I have a friend I talk to each day who is in another country I think he is aspie he isn’t sure he has many traits and we get each other. That is something at least. My family has made it clear at least the ones I know that they hate my guts and think I am the scum of the earth a useless terrible daughter and bring up things I did and do not even remember from 17 years ago just to hurt me. I think my cousin would be happy if I killed myself. I almost did but then I thought, maybe it would anoy her off more if I didn’t. I have tried many jobs couldn’t keep one, live on disability and hate it and have been trying to run a little online shop making jewellery which is the best I can do. I would not say I was high functioning but I am not low actually i don’t know and it gets tiring thinking about it all. I just know what I feel and experience and what triggers me and what I can do and can’t do.

  43. 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!

  44. 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.

  45. 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/

  46. 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.

  47. 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.

  48. 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??

      • Makes perfect sense to me. I’m planning on expanding this theme into a blog post of my own. Still mulling over whether I compose it as a poem or in prose….

  49. 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.

  50. 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.

  51. 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.

  52. 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?

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