Aspies For Freedom

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Hi there!  I posted over in general on the get to know eachother thread, but had a few questions and thoughts that fit better over here.

My first question is, for those adults who've sought out diagnosis, was there any benefit to that?  I sometimes think about seeking a diagnosis, but wonder what the point would be?  I am able to work, so it's not like I need to qualify for disability insurance or anything.  I also, while I'd like to know, and be able to say "ah, so that IS why I do that", am worried about my poor hubby's response, should I get diagnosed.  He grew up with a mentally ill parent (I know AS is not a mental illness), we've adopted our son who has ASD and a bunch of other things, we're foster parents to two special needs kids, we both work with people with developmental disabilities and mental illness for a living...I feel like he just really needs me to be "normal", you know?

My second question is, do you think I'm way off base in thinking I have Aspergers?  I'll write out my whole developmental history and current issues here.  Be warned, it's long, as I'm super-wordy (have trouble figuring out which details are important lol).

There's a family history of various neurological things.  My mom is Bipolar.  She was/is hyperlexic, early reader, poor social skills, and so on.  Has been Bipolar since childhood I'd say, as she frequently tried to kill (literally) her baby brother, from the time he was a toddler (which meant she was around 6 or 7) until she was entering her teens.  My dad has no diagnosis.  He's very mechanical, relates better to things than people.  Wonderful memory, great at math and spacial things.  He does marine logging, various contracted jobs, pilots a deep sea tugboat, etc.  He's got poor social skills beyond superficial "guy talk".  On my mom's side, there's a family history back several generations of depression, alcoholism, bipolar disorder (in my grandma) and general quirkiness.  On my dad's side, nothing I know of.  I am the only child of my parents, but have a bunch of half and step siblings.  So far, they all seem NT.  My Mom's sister (my aunt) has various learning disabilities.  My mom's brother (my uncle) was also super-bright, and has a history of criminal behaviour, drug use, pedophilia (he molested me when I was little, as well as his little sister), sexual assault, and so on.

My mom has a history of drug and alcohol use, and I was likely exposed to drugs and alcohol in the womb.  She was a single parent, and was physically and emotionally abusive, as well as neglectful.  She was beating me enough to leave bruises by the time I was 8 months old, according to family members.  As a baby, I met all my milestones on time.  I had sensory issues from the get-go, needing to be swaddled very tightly to sleep or relax.  There's all sorts of pictures of me from 6-10 months old, sitting on the grass in the yard, screaming bloody murder because I hated the feel of grass, which everyone found quite funny.  I had problems with feeding, colic, was lactose intolerant and wound up put on soy formula.  I was an early talker and walker, and very independent.  I was super curious and not aware of danger.  By the time I was 2, if my mom wanted to let me play in our fenced yard while she did dishes or whatever (remember, she wasn't about to win mother-of-the-year award or anything), she had to put me in a harness and tether me to the house, or I'd escape.  There was also a lock on my bedroom door, as I would climb out of my crib and get into all sorts of things.  I was reading and starting to write at age 3.

I attended a french immersion preschool, and did well, although I had seperation anxiety and tended to cry easily.  I wasn't all that good at socializing with the other children, preferring to stick by myself.  By Kindergarten, I had a couple of friends.  One was from a family who didn't speak english, but we had fun playing together.  My "play" often wound up getting everyone in trouble (I liked to play in the elevator in the apartment building we lived in then, I'd go into stranger's homes, peek through their mail slots, etc.), so I found it hard to keep friends.  I was never interested in dolls or the things little girls usually like.

By Grade 2, I was having significant social problems.  I didn't like the same games as the other children.  I cried easily.  I lost my temper easily.  I acted out sexually (taking off my clothes in class, showing boys my privates, etc.), as this was right after I'd been molested by my uncle.  I resisted authority.  I was like a little wild thing, not seeming to understand social norms and expectations.  I would ask to go to the washroom, then go play outside.  I'd leave the school and walk to the Mall.  I set fires, vandalized.  I had a frequent problem of going to the washroom outside (on people's lawns and such) instead of going in to use the toilet.  I wanted friends, but couldn't relate.  All my attempts to fit in wound up in my being teased, shunned, and bullied.  In hindsight, it's no wonder, as my attempts to fit in would not be seen as such by normal kids!  I started getting fairly intense special interests.  I memorized facts about animals, read encyclopedias, sent away to the World Wildlife Federation for pamphlets on various animals and collected those.  Also collected and sold rocks.  My idea of "play" when I was little, was to sit by myself in the yard, banging quartz crystals against harder rocks, "mining for diamonds", and then trying to sell what I broke off.  I also made a lot of mud soup Big Grin .  

By this time (early elementary) I had a lot of rigidity.  Things had to be the same, if they weren't done right (say things in my room were out of order), I'd have a meltdown, which involved head banging.  I used to stim by headbanging also, just sitting by a wall, rocking into it and banging my head, which would upset my mum terribly.  I believed I could fly (another special interest!) and was constantly making wings and such, jumping off roofs - my poor family was always worried I'd break something.  I had tantrums more than a typical child.  I had problems with voice modulation - I always spoke too softly, or too loudly.  I was unaware of body language with adults, or facial expression, and would get into terrible trouble because I just didn't know when to shutup.  I used to practice facial expressions in front of the mirror, because I've never felt very in control of my own face.  I was always described as looking "miserable", but it was really just flat affect.

Throughout early elementary, I had a Teaching Assistant unofficially assigned to me, even though I had no diagnosis.  I think this was due to behaviour, and how much trouble I had staying on task.  I also had trouble with verbal direction.  Teacher had to write directions out for me and give me a copy.  There also had to be a written schedule somewhere in the class, or I'd be forever asking what was next, when was reading, etc.

My problems continued in similar vein through all of elementary school.  Lots of fighting, lots of suspensions, cutting class, etc.  I was bright, but scraped by with C's and B's, because I didn't apply myself.  I had a hard time making and keeping friends.  My hygiene was terrible, as I can't stand the feel of water in my face from the shower (still hate it today, but just suck it up and do it).

Highschool was better.  "Geeks" had their own little subculture, so I wasn't such a loner.  I generally had one friend at a time, we'd have a falling out, I'd be on my own for a bit, then latch on to someone new.  My grades improved, as I mastered tests.  I still was unpopular with teachers, as I had a bad attitude, didn't do homework or assignments, and cut class.  Teachers would phone my mum, who'd say that as long as I was getting A's (which I was), I didn't have to go to school for anything other than tests as far as she was concerned.  By Grade 10, I was seriously depressed, but my family wouldn't acknowledge it or help me.  When I told them I had constant thoughts of harming myself, my mom said that was normal for my age!  I got through it, I decided I didn't like who I was and wanted to start anew.  I modeled myself after people I admired who were popular, and just "pretended" to be like them.  I pretended confidence, humour, and social skills.  I pretended to be interested in shopping, tv, and such.  It worked.  By graduation, I was reasonably popular, with a good gang of friends.  I was still "the wild girl", who would say and do things nobody else would dare, and who was always landing herself in hot water - that became my niche, when I figured out how to make that "cool".  Although I had a lot of "friends", I didn't feel very connected to any of them or myself - I was playing a part.  I finished highschool on the honor roll, and headed off to college.

College was a colossal disaster.  My attitude that had served in highschool didn't work there.  College was all smart kids like me, and just winging it on tests was no longer enough.  I flunked out.  I spent 4 years failing this class after that class.  I partied.  I dated.  I had friends and lost friends.  

I got a job at a remote lodge when I was 20.  It was eye-opening - when you LIVE with 14 people, it's harder to pretend to be NT.  They saw who I actually was, as my family has seen.  One of my coworkers suggested I get help.  He said "if your car was broken, would you keep on driving? no, you'd go to the garage!  get some help!".  I didn't right away, but when I got back from the lodge, I went a bit crazy.  Hardcore OCD and paranoia, lots of obsessive morbid thoughts.  I went to mental health, where I was diagnosed with PTSD with Generalized Anxiety and Obsessive Compulsive Tendencies.  My family doc diagnosed me with anxiety and depression.  I spent a year and a half on prozaac, severed most of my relationships, and went back to college.  I had problems again with my classmates (being a know-it-all, having poor social skills).  My instructor was helpful (she suggested I "play dumb" and allow the other students to help me, even though I didn't need it - she said I DID need to learn to interact with other people).  I got excellent grades, and graduated straight into my current job.

I'm now a mom to a wonderful adopted kiddo with ASD, BPD, ADHD, OCD, Anxiety, and tics, who I mentioned above.  I've got two special needs foster kiddos.  I run a registered non-profit organization.  I own my own home, and would be considered "normal" and "successful" by my peers.  My employers say I interview really well.  My coworkers, once warned that I suffer from foot-in-mouth disease and can be a bit of a bossy pants without meaning to, seem to like me.  I'm usually described as "kind and well-spoken".

I still have a lot of issues which point to AS:
- hyperlexic
- lots of sensory issues, including problems with auditory and visual processing
- get "stuck" on certain ideas, routines, etc. have a hard time with shift.
- I cannot relate to other people, I can't empathize with my hubby or put myself in his shoes
- I have to conciously think about what the appropriate facial expression for a given situation is
- I get overstimulated easily, and need a lot of "down time" to be able to function
- I stim a fair bit.  Most of it I'm aware of and able to control in public.  The stuff I do without noticing I'm doing it is relatively subtle (scratching my scalp, some wrist or finger flapping, finger play)
- a lot of trouble with organizing myself and starting activities
- trouble controlling my tone of voice
- I miss social cues
- I talk on and on about the same thing, and bore people to tears, lol.

there's more I'm sure, but that's the crux of it there.

So, if anyone's still reading this novel, what do you think?
Hello. I seem to be unusal here in that I was refered for diagnosis at 30 by my GP. I think the benefits of diagnosis are really good, but I didn't self-diagnose because until I was told about AS I didn't know it existed!
This looks like a case of Asperger's with Bipolar II, a very common comorbid for those with AS.

I've been here a while and I lack a lot of the "more obvious" things like sensory overload, "headbanging" or other pronounced stims, hyperlexia, math/science skills, academic ability, etc.  But I'm still Aspergian in other ways, although my inattentive ADD (significant) seems to conceal a lot of my AS traits (especially when I was younger.)

I wonder about your adopted kiddo with these 5-6 different diagnoses you have listed; I'm no specialist but personally I'm not a believer in having all those separate conditions "at the same time."  When someone has an ASD and they get diagnosed with OCD and ADD at the same time, what you may be seeing is either a genuine case of OCD or ADD, but rarely "both at once."  ASD includes rigidity/systematic thought and hyperfocus (very OCD-like) and very often you'll also have executive dysfunction along with narrow interests (very ADD-like).

I'm no specialist but I think ASD includes a lot of differences to begin with, and when an ASD kid has 5-6 different diagnoses, you'll usually find that it was because the AS went unnoticed for a while and the kid was misdiagnosed with a bunch of other things, instead.

Lemme know your thoughts.
Well, with my son, I'm confident in the diagnosis.  His original diagnosis, which he got at Sunny Hill Children's Hospital when he was just shy of his fifth birthday, was "severe classic autism" with "suspected intellectual disability".  Our son was a foster child first, and moved in with us when he was six and a half.  Prior to joining our family, he experienced significant abuse and neglect, which is where the PTSD stuff comes from.  In the first year and a half he was with us, we saw dramatic improvements, as he benifitted from a safe and stable home.  However, over the last year and a bit, we saw dramatic changes in behaviour and personality.  After repeated consultation with his regular psych, who wasn't able to diagnose or help him, we were finally able to get him in to see a neuropsychiatrist.  The neuropsychiatry clinic specializes in diagnosing and treating children with neurologically based developmental disorders complicated by mental illness, emotional disturbance, and/or behavioural problems.

The most significant issues for my son are the autism, bipolar disorder, and the PTSD stuff (which includes dissociative and severe attachment features - if it wasn't for the autism, the neuropsych said that my son may have wound up being diagnosed with dissociative identity disorder, also known as multiple personality disorder, but his limited language and cognition makes such a diagnosis impossible to determine).  As for the OCD and ADHD, I think the only reason that they were added as diagnoses is because they're significant enough to meet all the criteria, in addition to those symptoms caused by autism.  

Basically, a whole mental health team that deals only with complicated kids was scratching their heads and puzzling over my boy a bit.  Things are far from perfect - life with my son is a daily struggle, and we're definitely feeling burn out here right now, but we love him dearly (which is why he burns us out - it would be easier if we didn't care!).  The neuropsych suggested I write a book!

As for me, I bounce around wondering whether I've got Bipolar disorder like my mom and grandma, or Asperger's, or both.  I'm considering seeking out an official diagnosis, but, like I said, am unsure of the benefit.  If there's medication I can take to help, I'd be interested, but at the same time, I'm trying to get pregnant, and most psych meds aren't safe for pregnancy...
Danielle, I read your first post...I don't feel anywhere near qualified to guess at what your ultimate diagnosis would be; I just want to say, welcome, and congratulations on having overcome so many obstacles. Best wishes to you and your family. Smile

Danielle Wrote:
As for me, I bounce around wondering whether I've got Bipolar disorder like my mom and grandma, or Asperger's, or both.  I'm considering seeking out an official diagnosis, but, like I said, am unsure of the benefit.  If there's medication I can take to help, I'd be interested, but at the same time, I'm trying to get pregnant, and most psych meds aren't safe for pregnancy...


Simply judging by your original thread, I'd say you have both, and as I said AS with Bipolar is fairly common.  But too bad I'm not qualified to diagnose anyone.

couldbecousin Wrote:
Danielle, I read your first post...I don't feel anywhere near qualified to guess at what your ultimate diagnosis would be; I just want to say, welcome, and congratulations on having overcome so many obstacles. Best wishes to you and your family. Smile


I hope you don't take offense that I offered my opinion at what her diagnosis might be.  I try to help, just look at "what it seems like" from her words, but obviously I'm not qualified.

Are we good?

Batman55 Wrote:

couldbecousin Wrote:
Danielle, I read your first post...I don't feel anywhere near qualified to guess at what your ultimate diagnosis would be; I just want to say, welcome, and congratulations on having overcome so many obstacles. Best wishes to you and your family. Smile


I hope you don't take offense that I offered my opinion at what her diagnosis might be.  I try to help, just look at "what it seems like" from her words, but obviously I'm not qualified.

Are we good?


Yes, of course.  I was talking about myself only. Smile

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