Adult Diagnosis? Opinions and Help?

Post Reply New Topic

Okay this might be really long, but the basic thing is that I'm an adult finally looking for a diagnosis (I have an appointment with a psych for October) but this is all coming at me really fast. I don't know any autistic people I can really talk to about this, and I've only told a small handful of people I'm even looking for a diagnosis and only because I felt like they could help me get it. The problem is I keep having these fits of doubt, and I'd really like to ask people about how they relate to my experiences and if they feel like this is something worth pursuing and if you think it could help me.

I'm 20 years old and a girl, and when I was about 17 I read this article about how aspergers and autism is severely under diagnosed in women and girls because it manifests differently. I wish I had the exact specific article I read because there's so many now but they had a bullet point list of traits girls with ASD exhibit and it struck me very personally. The only one I remember is how most girls with ASD aren't concerned with fashion and dressing or keeping their hair and usually just do a "wash and wear". After reading I remembered that when I 10 years old my mom was convinced I had aspergers, and she might not be a psychologist but me and my mom are very close I feel she knows me better than anyone else, and she's also the type of person who does thorough research on everything she does and is never unprepared. I remember simply thinking "I'm not autistic" when she brought it up to me. I had two cousins who were autistic and from as far as I could see I wasn't anything like them. I got the evaluation and I was diagnosed with ADHD, and my mom was furious I remember her yelling to people on the phone about how stupid the doctor was.

I sort of just quietly ruminated in this idea of "maybe I'm autistic" for almost 3 years until april (I turned 20 in June) when I finally thought to bring it up to my mom that hey I think I might be on th spectrum and I want to get tested again, and I thought I would have to argue my point, but as soon as I brought it up she started talking about how the only reason I didn't get diagnosed was because the government didn't want to give us the extra money and she said "There's never been a single doubt in my mind that you're on the spectrum"

Okay that's already long but here's some of my background and experiences and I was wondering how many of these things do you guys think are actually asd traits and how many are irrelevant and I'm just weird.

I walked and talked from early on (which is an ADHD trait), but my mom notes that I had severe behavioral problems from the age of 2, which was mainly defiance and tantrums. I had an older brother and a younger sister at this age so the fact that my mom found this above normal toddler tantrum behavior is what sticks out to me. She also said from age 2 onwards I never really made eye contact but said it was because I was "stubborn". I have a really fantastic memory so I actually have memories from when I was as young as 3, and one thing I know is that I've always been really bad at identifying people, especially by faces. I never realized until very recently that wasn't a normal thing, but apparently nobody notices it about me. I tell people I'm face blind but I'm not sure if that's entirely true, it's not impossible for me to remember faces just very very hard and definitely not something I can do subconsciously.

My dad was very hard on me, harder than my other two siblings and it was because he felt I didn't respect him. (which really, I don't)

I was incredibly defiant and stubborn, he couldn't make me do anything I didn't want to, and I was never afraid to tell him he was being unfair or to just say no. He spanked me and screamed at me but it never changed my mind it just hardened my resolve that he was unfair.
My parents got divorced when I was 4, I still saw my dad but I don't remember feeling very much about the seperation.
When I started going to school my behaviour became more of a problem. I frequently would have very loud outbursts, screaming, crying, stomping. I would often repeat small phrases over and over like "I want to go home" or "leave me alone" I wasn't really capable of speaking. I would sometimes pull at my hair, or run my fingers through my hair and violently scratch at my scalp.
It's frustrating because I know these happened a lot, and I can remember some very big ones but for the life of me I can't remember what caused them.
When I was in grade 1, there was a cubby area where you could sit on a bench in the wall, and then pull down a whiteboard so it created this small isolated room and I would often sit in there with my knees held to my chest. I remember putting myself in there a lot just because the classroom was so overwhelming for me. School was also hard for me early on because I had seperation anxiety being away from my mom, and when I would have these tantrums I would often just repeat over and over "I want to go home, I want to go home" even if that wasn't what I was really upset over.
I remember one really bad tantrum I had when I was 6 where I started screaming and throwing desks and my entire classroom had to be essentially evacuated. when I had tipped all the desks and the classroom was empty I lied down until the teacher's desk in a ball and started crying.
In 2nd Grade the outbursts continued and early on into the year I was moved to a different school in a different city to go to a special program. It was meant for only 6-8 children in the school disctirct with the most severe emotional and behaviourial problems. At the point I went into the program I was only diagnosed with PTSD and a learning disability in reading.
The class was 4 teachers trained to work with special needs kids, and the number of students fluctuated but the number was usually around 5. My outbursts continued in the same fashion they always had. Screaming, crying, tipping desks, ripping and breaking things.
I was in the program for me 2nd and 3rd grade and never made any real progress. I would make it to what seemed like high points and then regress. The only reason I left the program was because my family moved, I read that if I hadn't moved I would have stayed in the program for my 4th grade.
My new school was not prepared for my behaviour either, I feel like I lasted about a day in the normal classroom because I had a huge explosive episode with the screaming and tipping desks. For most of my 4th grade year I was removed from the classroom, working in a secluded room with a TA. For most of the year I was only on half days because the school didn't have resources for me. I really loved my TA, she was very patient and understanding with me and she was a comfort when I didn't have my mom there. She really played to my strengths, which were that I was creative and I gave 110% if I was truly interested in something. I had been very obsessed with any and all marine life since I was around 5, but especially mammals, and specifically orca whales. She gave me a blanket that belonged to her daughter that was covered in orcas and we kept it as school as my comfort blanket which was a huge help. I still had my outbursts, and the damage control was better but I was only in the classroom for 15 minutes a day.
The school brought in a district counselor to make an individual educational plan for me, and I wrote a 61 page evaluation and IEP for me based on observations he made over an 8 month period. I only found out about the existence of this recently since I was 9 when it was written and I recently read it though I don't have it with me so I can't quote it directly but he was the first person to suggest that I was on the spectrum.
This document was really good because he actually wrote down specific accounts and charactreristics of my tantrums. The main causes he noted were that I would often cover my ears and complain that something was "too loud", if someone made changes to my schedule I was not aware of, or I was faced with something I felt like was too difficult, or I wasn't ready to move on to the next task. He said before tantrums I would often put my head down on my desk and cover my head with a hood if I had one.
This was what led to my mom doing some research on the subject and trying to get me diagnosed with aspergers, which I didn't get but I sort of just accepted as "well that's it, I'm not autistic"
When I got into 5th grade I was assigned a new assistant and I hated this woman. Not only was I incredibly upset that I couldn't be with my old TA anymore, she moved me to a new room and got rid of all my old stuff. The room I had previously was filled with toys that I could play with as a reward, and projects I built with my old TA. Specifically dollhouses I had built out of cardboard boxes, and she wouldn't let me use my old comfort blanket she forced me to take it home. She gave me a new one and I refused to use it.
I was moved to a new room that was entirely bare and in the basement of the school, and I had a series of very large tantrums for days because of it.
This is also when a very teffifying thing started happening to me that continued all the way until my 6th grade where the assistant would forcibly carry and lock me in this empty room whenever I was having a tantrum. She would hold the door on me and I would struggle against her and beg to be let out.
I had occasionly hit or bitten people who tried to come near me when I was upset before, but this is when my violence against other people really escalated and I would punch, kick, scratch, and bite to trying and make them let me go. Sometimes it took four adults to hold each of my limbs and carry me away to lock me in the room. I was also held down and sat on. The room basically existed for my use only, as far as I know I was the only child in the school who was ever locked in there. Sometimes though other students would be using the room as a general area and I would be locked in a supply closet when I was having a tantrum.
I had no improvement in behaviour and was sent to an alternative school when I started middle school. I obviously did not belong in this school and didn't fit in at all, every single child there did drugs I was the only one who didn't. Nobody seemed to have any problems similar to mine. On the first day of school I was getting berated by a boy so I threw juice on him, he stood up like he was going to hit me but was restrained by teachers. I was supsended from schoo for two weeks and when I came back I was working in an isolated room in the back of the school and my mom had to be there with me. The work at the school was self paced so I did not do very well at all. I completed only 2 courses in my 2 years there. I didn't have many tantrums there because I was told that if I had one more outburst I would be expelled, so I mostly just slept, I didn't speak to anyone, and I would skip if I felt it was going to be a bad day.
After 2 years it was obvious this school wasn't the place for me and I was placed in a normal middle school for my last year, but I was put in an alternate self paced program for the first month, they realized it wasn't working for me, and I was switched to normal classes. I had been pushed ahead 2 grades but I was missing so much information, and without the key introductions to the class I had no idea how anything worked so I didn't do any work or hand any assignments in just because I didn't know how to and I failed.
No tantrums but I did spend a lot of time in the hallway crying on the ground and I skipped days if I felt I was going to be upset.
I got pushed on to 10th grade depsite failing 9th, and it was pretty much a repeat of 9th. No outbursts, but no work was done and I spent a lot of time crying alone.
I finally dropped out of school that year and never went back.
That was mostly just school background because that's where most of my problems were but I still have more information sorry this is so long.
I've usually had friends but never large social circles. Just 2 or 3 friends I'm very close to. I've had the same 2 best friends since I was 10. I've been told that as a friend I'm very passionate, caring, and loyal. I think people like me because I've consistant. I don't feel like I've changed much at all through my entire life and people sort of like that about me. I'm very honest and blunt but also stubborn with strong opinions. A lot of people have told me that I'm rude, and my friends got very angry with me when I was younger for being a poor listener, and for not shutting up about things I like. Also people have gotten angry at me for being bossy and controlling. I have internet friends too, but once again they're mostly the same friends I've had for the last 10-7 years.
I really liked imaginative games and I took 90% control of them and made my friends follow my rules. I had lots of different stories and worlds.
I've found the sorts of people I make friends with end up being people who are sort of vulnerable and change themselves to get approval from people. They like me because my standards aren't high, I don't ask that anybody try to impress me I just want people to be honest.
Most kids however did not like me because of the way I acted, even if they hadn't seen my tantrums kids thought I was weird. I was bullied a lot, and I started acting out violently. If other kids tried to antagonize me I would spit on them, pull their hair, hit them, kick them, punch them. I got into lots of physical fights with other children from when i was 6 all the way up until was 12.
I've never had good eye contact and people would tell me that, I specifically remember both my dad and my principal when they would lecture they would tell me "Look me in the eyes" and I would have to focus on something like the bridge of their nose. I ended up growing out my bangs to cover my eyes so nobody could tell I wasn't making eye contact with them.
My mom often thought when I was young that I had problems hearing or seeing because all the time, to this day even, people tell me I speak to loudly but I can't tell. I'm bad at whispering too apparently. My hearing though is actually very, very good. I can hear conversations across the house. For example my mom will tell one of my siblings in a normal speaking voice to go get me, so I'll just get up and go to her. I can also hear small noises other people wont notice unless I point it out to them and it's otherwise completely quiet. Example, today I told my sister i could "hear the lightbulb" in the lamp beside us. I was talking about how when she bumped the table I could hear the coils inside make those vibrating sounds. I had to repeat the sound about 5 times before she was able to hear it.
I have often been bothered and overwhelmed by loud noises, my dad had these bands he would listen to that used heavy abrasive sounds and I would cry and beg him to turn it off because it hurt my ears. He would turn the music up and I would start screaming.
I don't know exactly why my mom thought I had bad eyesight but I also have perfect vision.
I have a lot of problems with food, and I haven't ever really gotten better. There's so many foods I just can't eat, I'm not allergic to anything but I'm constantly bothered by flavours and textures. I had over squishy textures, I can only eat bread if it's toasted. I only like certain flavours, and I can't stand too many flavours mixed. I've found the most I can tolerate mixed together is about 3. I refused to have food touching when I was little, and I'm still not okay with it but I know it's a pain for other people so I just pretend it's okay and just eat around the areas where it's touching.
I have problems with clothes sometimes, mostly itchy seams and tags. I'm constantly adjusting my clothes in public I really don't care. I also hate hate touching certain things but I think everyone is like that.
I have a lot of problems sleeping, I have a lot of anxiety which stops me but also it's really hard for me to get comfortable. I remember when I was younger sometimes I would scream and cry and rip all the sheets off my bed because I couldn't stand the way it felt and I couldn't sleep.
I'm sensetive to strong smells, I notice things other people don't, and I'm constantly covering my nose.
I've always had these really obsessive interests, they're the only thing I can think about and I know everything about them and I tell everyone. I've often been called a walking enclyclopdeia, and I've described myself as being a sea of useless facts. I feel like I preface 90% of interactions with "fun fact!" or "Did you know..."
I've also had some tension with friends because I take it personally when they don't seem to care about a thing that means a lot to me, like a series I love they won't watch, and it feels stupid to be so upset about but also I feel like I can really only communicate to people through things so if they won't share interests with me I can feel very lost. I go off on really, really, long tangents and rants explaining things I love and I think I repeat them a lot. I only have one or two friends that actually seem interested, though they might be acting, when I go on like this but I do it to everyone.

So?? That's all I can think of right now, even though it's a lot I'm sure there's more but I'm really scared about the idea of pursuing this diagnosis. I'm almost positive I'm not going to get it on my first try because of my gender and age and if I am on the spectrum I'm probably "high functioning". So I have to make a choice of "Yes I am autistic and I'm going to fight for this diagnosis" or not??
So I want people to tell me if they share my experiences or they just in general if this is enough to say I'm on the spectrum, and also I'd really like to hear about other people who were missed and weren't diagnosed until they were an adult. What they went through, how they were missed, and the pros and cons of getting and official diagnosis??

You sound and write very much like a autistic female. (if you use paragraphs its much easier to read what you have written ) You should never have been treated like that in school, it makes me sad and angry to read that.

The morning I went for my diagnosis I was terrified, scared that I might not get a diagnosis (Not knowing what to do next and going back to square one again wondering what the hell was going on) And terrified of getting a label which for good or bad was going to change my life forever. I have NEVER regretted my decision to go for diagnosis. The assessment itself, its OK you know, its not a scary thing, honestly its fine, you will be OK.

We are all different and don't all fit into the stereotypes which NT like to put us, don't fall for it. Yes girls present differently, you tend to have ability to mask some of the behaviours which us guys can't and so its harder to recognise autistic traits as the criteria which has been used for so very long is male biased, its changing so thats a really good thing isn't it. Many of us are full of doubt before we get a diagnosis and sometimes after too, I think thats very natural...both those things happened to me too. After, should you be successful is getting a diagnosis you may well view yourself if a different light. Again I think thats normal too, after all you have gained a new identity. Its also an opportunity to reassess whats important to YOU, what you need and don't let anyone tell you what or how you feel or what you need to do, take council yes, it its YOUR life, its Your choice how you want to live it.

Going for a diagnosis is a good thing to do, its a first step...its a kind of freedom

There are people here who have been or going through what you have been and are going through, its safe place

I don't recall you saying where you're located. I'm thinking the US, except for how you spelled "behavior."

I would say go for the evaluation. It would gain you accommodations in college.

You had quite a childhood! Yet you seem pretty okay at present. Do you have similar "symptoms" now? Or have they abated somewhat (maybe the "female" presentation?)

Your "symptoms," definitely, were evident then.

It's a bummer how you were treated.

There are people here who are excellent at details. Wait for them. Don't give up.

I would say, based on what you wrote, that you exhibited many signs of autism. Some "classic," some Aspergian.

How were your grades in high school? It seems as if you graduated. If so, I'd be proud of myself after all which you've been through.

I will agree with the other posters that said you have many autistic traits.

It is very possible to have ADHD and be autistic.

Autistics often doubt they are autistic. One reason is black and white thinking. When and Autistic looks at an Autism trait checklist they invariably will see a few things that do not apply to them. You do not have to have every trait to be autistic just most of them and the core ones. Another reason is the skepticism of others including doctors.

I would advise you and your mom to look for a clinician knowledgeable in how autism presents in adult women. This might be a time consuming and frustrating process as many clinicians have outdated, child and male centric view of autism.

I am wondering if you mom suspects or knows that she is on the spectrum. Detailed research is one trait and her particular passion about that topic even 10 years ago when autism was somewhat less public.

Much of what you write is consistent with what I understand are significant traits of Autism.

Your first TA sounds brilliant - she worked with your strengths, others seemed more concerned with coercing you to be what you are not, making your distress worse and using methods which read as abusive.

You should go for the Canadian version of an "equivalency" diploma.

Do "colleges" in Canada offer programs where one can combine a HS diploma with getting some sort of qualification?

You won't engage in the same behaviours which you had were younger and you will change again as you grow older. You a young woman with a bright future ahead of you. Autism changes over time, things thats were an issue once won't be, and things which you found easy may become more difficult. People for get that, its not that autism is unstable, its just that life and our experiences throw different things at us, and we, well we react to them in our own unique way.