19 and Looking For Answers

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Hello all, so in short I am a girl of 19 who has just started college and is desperately looking for answers. I don't know if I'm in the right place, but for years I've felt that Asperger's has been my description, although as I am from a small town where no one knows much about autism spectrum disorders, I have never been diagnosed. My hope coming here is to possibly find some insight as to whether or not I should pursue a diagnosis or remain content with my diagnoses of severe social anxiety, selective mutism, and "pickiness". All I want is answers to put my own mind more at ease and to finally find some road to improvement of my quality of life. Soooo basically I suppose I will just do my best to describe why I am considering this search for a diagnosis and, if anyone on this site would like to supply their opinion (regardless of what it may be), I will gladly accept the advice.
Well (this will be long, sorry). To begin:
As a young child, according to my parents I seemed normal enough. I was actually quite gregarious and I loved people, so my parents believed that people loved me back just as well. I'm not sure how they never really saw it, but I had a much harder time at school than they believed. I suppose that might be because I never thought it that important to tell them that the other kids didn't like me so much except one time that a girl I was trying to be friends with threatened me pretty severely not to come to school the next day while she was mocking me on the bus. Most of the time I was pretty content anyhow, I had a couple friends who didn't mind my peculiarites and that was enough, even if the other kids told new students to stay away from me because I was weird. Parents, teachers, and neighbors all noticed I was rather "strong-willed" and such, but apparently nothing about me stood out enough to suggest otherwise. (except the time I spontaneously freaked out during class in 4th grade and was sent to the school conselor, who then recommended my parents to begin taking me to a therapist to control, well, I'm not exactly sure what to this day). Other unusual habits of mine as a child were that I was an extremelyyyyy picky eater (like, I would pretty much only eat bread, cheese, and fruit) and I was so sensitive to touch that I once ripped off all my clothes as my parents were trying to dress me when I was about 3 years old and apparently ran down the streets of the neighborhood as so screaming. My doctor, however (whom I hated terribly) said all this was typical of young children and that I would grow out of it by the age of 4 or 5 (did not happen). Eventually when I made no improvement with regards to my eating patterns and was falling too far below the average weight for children my age, my doctor had no choice but to prescribe me to drink a milkshake every night. Behaviorally I apparently was quite literal and I did not understand the concept of lying, and though I was generally pretty care-free, I started developing anxiety issues around the age of 8 or 9. My parents took me to a therapist for a while, though at the time I detested the idea of being forced to talk to this man and would refuse to speak to him unless he brought his dog. The last time I went, he made me take some very long test that lasted many hours because I took every question so literally, and my parents eventually became so fed up with it that they pulled me out along with the test and we never went back (though the office called her frantically on our way home that I was not supposed to leave the building with the test). I had quite an affinity for drawing, and would pass hour after hour making countless doodle stories and maps when I needed to clam down (which I still do almost every day). I also went through phases in which I became obsessed with a single thing or subject for months or even years at a time with an annoying persistence (the most recent of these having been a sudden desire to learn french, which I am still obsessed with and have been for the past year).
Though I became more tolerant of touch over the years, to this day I still have enormous problems with eating pretty much the same few categories of things that I did since I was a toddler (though out of embarrassement, especially from the fact that everyone else around me, including my little sister, had no such issues, I have been slowly forcing myself to expand my menu). Things started to get more difficult for me around age 11. Up until then, I had generally ignored the way other kids treated me and seemed, to my parents, to be all smiles and gregariousness. I abruptly fell silent around this age and hardly spoke to anyone for the next 5 years. My parents still didn't see this as a big deal (I guess I talked more at home), though by 9th grade many students and classmates mistakenly thought I was deaf and/or mute. At least they didn't make fun of my anymore, and I had more friends that I used to that way. These new friends helped point out to me that sometimes my behaviors and styles were a bit bizzare, and helped teach me to do things such as not wear the same tall white socks every day, do my hair, put on make up, and dress myself in a more socially "normal" way (though I have many issues still with the hair and make-up). As my anxiety grew worse and worse, I started going to a phsycologist in 9th grade, who diagnosed me with severe social anxiety disorder (literally off the charts) and selective mutism. However, she was no help in actually helping me deal with these problems, and I stopped going after a couple months. Around the age of 16 I was becoming incredibly frustrated with my inability to communicate effectively with everyone and my growing self-consciouness about my oddities and anxiety, so I started in on a goal to "become more normal". This is when I started forcing myself to eat more foods (apparently about 12 years late), allow people to hug/touch me more (though I got over the sensation of clothes relatively young, I to this day am very uncomfortable when anyone tries to hug me or any other significant amount of contact--though I don't freak out and fall to the ground anymore), and talk more, among other things. With all of these, I still struggle immensely, though I have made slow progress. However, having just started college, I am facing the reality of how different and "behind" I really feel compared to everyone else. I am an obsessive lover of routine, thus for the month before college began and the 1-2 months afterwards, I suffered panic attacks nearly every day and was absolutely miserable. I had a very difficult time making friends, and though I have found a group of people, I still get extremely frustrated at my inability to communicate amongst them as everyone else can. I feel I am constantly missing something both verbally and nonverablly that I wish I could explain to them, but I have no explanation for why I am the way that I am. I feel this way in every social situation and lately have started becoming rather depressed about it all. My anxiety is nearly unbearable now and though I gave therapy a third chance, I nearly screamed after the first session because the psychiatrist said to me all them same things I have heard a million times and I could not make her understand what my problems really were, and how I really felt, because often I just cannot find the words or the right facial expressions or tones. Due to this, I come off to most people as very unemotional, even if on the inside I am writhing and just want some some way to express this. I have relatively little struggle academically (at least in the science department) which makes me even more upset, as I cannot even relate to most my friends in the struggle of grades and so I often pretend that my grades are much worse than reality. In addition I have synesthesia, though I am afraid to mention this to my friends as well because I fear them finding me too weird. I don't know how to explain everything to anyone, though I did try this summer by writing a letter to my parents and suggesting that I wanted to get tested for Asperger's. They took it completely the wrong way and treated me very carefully the next few weeks, but I was so embarrassed of myself by their reaction that I dropped any more pursuit of a diagnosis. I am only writing now because I continue to have mounting difficulties for which I have no explanation, and no therapist has ever been able to help me (though I wonder if this is because we have always been looking in the wrong direction). If anyone can offer me more informed advice as to if Asperger's is a viable possibility or if it is rather something else, please let me know. I have been wondering about the possibility of Asperger's in me for the past 5 years due to how closely I relate to research I have done on the subject now, though I recognize that as a young child I didn't fit a large number of characteristics, and being 19 I wonder if it is too late to consider a diagnosis anyways.
Thanks for reading this long post and offering your thoughts,
-Sarah

Sorry, I didn't read it all. One look at the paragraph lengths and I was thinking "here's another typical Aspie" and the bits I did read fit too.

Welcome to Wrong Planet!

First, nobody on this forum can diagnose you. There are a lot of different opinions on this forum about what the Asperger's constitutes and who should or shouldn't be on the spectrum.

Your post doesn't read the same as many of the first posts on this forum by people who thinks they might have Asperger's. Usually, those posts tend to essentially be listing out the most obvious characteristics of being on the spectrum and describing why the person posting fits them. In your case, you didn't do this. Quite a few of the common characteristics, you didn't even mention.

However, I do note that many of the characteristics that you did mention are common to people in the spectrum, even if they're not the most commonly mentioned. It does seem to me that it's a reasonable possibility that you might be on the spectrum, but certainly no guarantee.

Have you tried the AQ (Autism Quotient) test? It checks to see whether you have characteristics commonly associated with ASD. It's entirely possible to have these characteristics without being on the spectrum or to not have these characteristics and still be on the spectrum, but it's a good tool for getting a general feel. You can find the test here:
https://psychology-tools.com/autism-spectrum-quotient/

Age 19 is definitely not too old to be seeking a diagnosis. I was diagnosed only about 6 months ago at age 36. Note, though, that as part of the diagnostic process, the psychologist will probably want to talk to your parents, so be prepared to have that discussion with them.

Depending on where in the world you live, a diagnosis can also be quite expensive, so if it's not covered by a national health plan or by insurance, the cost might be an issue.

Welcome to Wrong Planet also.

I would advise seeing what type of resources for Autistic people there are at your college. I would start by contacting the your college’s office of student disability services and tell them what you told us. They might know where to get an assessment. Print out your post to use it as a script.

At age 19 you are becoming an adult. Part of being an adult is that somtimes you have to make decisions that you feel is in your own best interest dispite parental disapproval.

Many people here have the difficulties that you described so feel free to ask for advice or vent with others going through the same difficulties. That is what this site is here for.

Thank you, I know no one here can diagnose me but I was just looking for advice as to if I should seek further information or not (because testing is really expensive). I have taken the AQ test with a score of 41, though I know this doesn't necessarily mean I am on the spectrum either. I could write out a more detailed list of my symptoms if I do decide to seek a diagnosis, I realize I didn't write out all the most common ones in my post, just the ones that came to my mind the strongest.

You might be Aspergian; it is almost certain you are not "classically autistic." You have some sensory symptoms, and you're a picky eater. This could mean autism, or it could be something else.

You didn't show any symptoms as a young child---except for the taking off of the clothes. How were you with other kids at age 3-4? Did you have friends? Trouble in school? If you exhibited no apparent problems relating to people in your preschool years, that argues against autism.

My advice: don't give a diagnostician a list of symptoms; they might think you're "fishing" for a diagnosis.

You are most welcome here, even if it turns out you're not autistic.

Hi welcome to Wrong Planet, as others have said you do have a number of characteristics but it could be other things as well. Keep in mind that most females present differently than males. Tania Marshall (I believe that's her name) Google female Aspergers and you'll find her has good information on this. If you're having trouble day to day trying to live up to expectations it could be worth it to pursue a diagnosis and maybe even if you aren't and you're just really looking for some answers. There are 2 things to bear in mind though: many psychologists and other specialists don't have much experience with females on the spectrum especially high functioning ones so you may encounter a false negative when trying to get diagnosed. If you continue to do research and feel that Aspergers/ASD describes you don't be afraid to get a second or third opinion. The second problem you may run into is that when making a diagnosis doctors like to have someone that knows you well from childhood and can describe your symptoms. It took me a few years to convince my parents that I was on to something so it may take some time on your part as well especially since your parents like my don't seem to keen about a diagnosis. Also I'm 17 and just now starting the process of getting diagnosed and many women don't get diagnosed until they are in their 20's 30's and 40's so 19 is not too late! Good luck and I hope you can find some answers!

I'm also nineteen and looking for a diagnosis. And, like you, I'm very uncertain about just how valid my own opinion is, especially since I've seen how harmful self-diagnosis can be. If you're looking for a sounding-board, I'm happy to oblige; our stories are quite similar. I've grown up with ARFID and sensory dysfunction, too, and defy the autistic norm by having been extremely sociable as a child. I was labeled gifted and ADHD as a kid, then diagnosed with GAD, until recently it occurred to a psychologist to send me to an occupational therapist. Now I'm waiting for an assessment date and sensory therapy. It's certainly not too late for either of us to find answers and solutions, so don't worry about that. There are members here who only discovered their diagnosis in their 50's. Most will tell you that it was a worthwhile experience. Is there anything in particular that makes you doubt your original diagnosis?

Hello Sarah Liz,
Thank you for your introduction.

I picked out the following points which seem significant. 1 touch sensitivity, 2 social difficulties which increased as the social demands placed by life became more complicated. 3 liking routine, 4 ability to developed passionate interests and to pursue them, eg language learning. 5 a score over the threshold on a recognised screening tool. This tool was drawn up with adults in mind which makes it an appropriate first step at age 19. 6 being either bullied or ignored throughout school life. This reveals two things, the first is that there are unpleasant people out in the world of school, and you have something in usual in your communication style, or way you move, or perhaps that you are not surrounded by other people and the bullying *******s latched onto that.

Now something else interesting is you wrote of not being good at communication outwards, but that incoming information comes in just fine. This is not something you wrote just like that but I see it in the pattern of the events you described.

Looking at the touch sensitivity, you wrote of workiing hard to become acclimatized to the touch sensations, suggesting the sensitivity is still there and you have worked out a coping mechanism rather than cured it.

It is common for people on the spectrum to have very high levels of anxiety which prove very difficult to address with the usual tools of therapy. This seems to be became the root cause of anxiety is autism/aspergers but this is not obvious to the therapist unless they are experienced with autism and aspergers in women. It presents in different ways to men, the way women are brought up seems to bring ways of masking obvious autistic traits.

Also, it is possible that a therapist may think autism only affects boys.

In your account I can see lots of stuff in the social area, the repetitive and restricted interests ( though I prefer to go with Dr Wenn Lawson and say Passionate interests). Synethesia ( senses getting tangled) is sometimes experienced by autistic people, and it can be anywhere on that spectrum from classic autism to aspergers.

I see many things which seem consistent with the autism spectrum, with the caution that I do not have any recognised competence to diagnose. It has consistency with autism in women - others have observed your account seems a bit different from other accounts.

It is never too late to be assessed. While there is very little out there for adults, your research and feedback from a Competent assessor can at least supply the missing manual pages. It may make that severe anxiety more tractable.

Could I suggesting searching YouTube for lectures by Wenn Lawson, Sarah Hendricks and Tony Attwood for starting points. Sarah has one presentation on women on the spectrum, also a conference presentation to the UKs National Autistic Society on how anxiety affects everything.

One observation, if you have reasonable intelligence, it is possible to go through school, college and even several years in work undetected. There is a PRI e sometimes of exhaustion and anxiety from the extra efforts on stuff non autistic people can do intuitively.

Difficulty in lying, taking things literally are features of autism as well.

It can give some great visual abilities.

Welcome to Wrong Planet!

It's true that women/girls are frequently overlooked in autism diagnoses. I believe, firmly, that the male-female ratio when it comes to autism is not 4:1. This figure is ridiculous, given what I know, anecdotally, about the quantity of females on the Spectrum. And the male/female ratio on WrongPlanet (which I believe is very close to 50:50). It's certainly not 4:1.

Therefore, it's quite likely that autism in females is under-diagnosed.

This is why I said you "might" be autistic. But it's also possible that you are not. Other conditions can account for at least some of your symptoms. My recommendation, should you want to be assessed, is to find someone who specializes in female autism.

There are girls/women who are absolutely autistic, no doubt about it.

There are others, though, who have a "social conscience," so to speak, who are able to "mask" their autistic symptoms well---even at very young ages.

Yes, it is true that it is evident that people with "classical" autism have autism. There might be the (very rare) "high-functioning "classic" autistic person who might fall through the cracks, though.

You could certainly be autistic. But, at this time, it is unlikely that given where you live, you will get better help with a diagnoses.

Ideally, you would be tested by someone with expertise in diagnoses adult females with autism. They do exist. And, wealthy areas of the country, such as Fairfield County Connecticut, it is now possible to find therapists knowledgeable in female autism for those that can pay for treatment.

Well that is a long intro. I am no expert on ASD in women either, but check with your university's accommodations office. They might be able to help.

You can also try out the Aspie Quiz here and the RAADS-R here. They might give you some insight into yourself.