Concerns about my situation in relation with a TBI

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Hi, it's my first post here, so I'll try introduce myself...

I was recently diagnosed with Asperger syndrome by two different psychiatrists at age 38 (one that my employer sent me to for an analysis) and reading about that condition made me believe they were right.

At first, I preferred to deny that even if I knew I had some characteristics but I felt I was too "social" to really be Asperger. But I had to read and learn more about this and now I see that it really explains some of my behaviors since I was a kid. While I can recall things that happened (or mostly sightings of objects and noises) from when I was 2 years old. I had an imaginary friend with a weird name well before I went to school and while I don't remember that clearly. My parents told me about it later. I still use that name as a password for some website registrations that don't require numbers!

I managed to get college education with decent results (but while i had good results at school, it was very hard for me to go through those years as I was different and others noticed too, especially at elementary school...). I studied at University but I was never able to complete my education (I tried political sciences, sociology, human resource management and mostly in economy). While I like economy, I can say that mathematics have never been something I was very good at. At least, not since high school when I had serious conflicts with a math teacher who didn't like my father (she used to work with him) and she hated me too at the point that she had me suspended from her classes in a school and got me out of school for 3 years later for 3 days in another school (she moved at the same time as I did!).

At elementary school, I was very poor in sports and not very interested in doing what we were asked for... I remember at kindergarten being quite good at commenting other's work and their poor skills, I still remember a classmate drawing a house with a chimney perpendicular to the angled roof and commenting about that and the teacher went to see me and asked to see my drawing which I had refused to do because I felt I wasn't able to do it! She had to inform my mother about my strange behavior but I was excused as being a perfectionist who'd rather not try to do something than doing it wrong! At about the same time, I learned how to make my bed in the morning and I would take about 15 minutes doing it, removing all wrinkles from sheets and centering my pillow with a ruler until I got bored and decided never to do it again!

Then in first grade, I was commenting on my teacher's way to teach how to read a clock (she didn't care moving the hours hand on a huge fake clock that was installed on the blackboard (which was green) while she moved the minute hand so 4:45 looked more like 3:45!). I also soon noticed that we weren't taught the imperial system which had been replaced by the metric system a few years before but it bugged me to the point I replaced my clear plastic ruler that was graduated in centimeters with one that was made of wood and graduated in inches only which I previously used to center my pillow on my bed (at that point, I was already bored and I left my bed ready for the night!). It didn't take long until my teacher noticed and asked where my 30 CM ruler was! I told her that this ruler was also a 30 CM ruler but that it was graduated in inches, 12 of them, and that she should show us what were the fractions of an inch (needless to say I had to bring back my boring 30 CM ruler to class...). I had to rely on my parents to learn me the fractions of an inch and the conversion tables for most measurements (that was pre-internet days and I was 6-7 years old so I had to ask someone!), they eventually gave me a calculator with metric conversion but I still had to learn how to convert the decimals into fractions!
I also remember writing in a first grade "exam" (in which we had to figure the color of things and write the color's name correctly) that tomatoes were orange when my stupid teacher told me that they were red and got me points off. I answered that those we had from our garden at home were many colors from green to yellow and orange and changed as days passed while sitting on the kitchen window sill but we didn't have truly red ones! And I also added that apples weren't always red and that bananas could be green or almost black BTW... That didn't help me getting back my points but it certainly made me hate her even more. During recreation periods outside, I didn't talk to other kids and would run on a series of wooden rail ties that were suspended and and attached with chains on each end to wood poles and were quite unstable. I was the only one who cared playing with these and most other kids who tried had a hard time to walk slowly across one section and got bored so I had that space all for myself most of the time! This game was dismantled soon after I left that school as it was considered dangerous for injuries (along with other unsafe games made of wood, old tires and steel cables). Here's a tiny image of the place I found on the net as it was back then, the game I liked could be seen on the left.

That's strange, I remember things being in color back then, I'm not old enough to have lived in the black and white world my parents lived in when they were kids

Speaking of recreation, I remember another 1st grade teacher who seemed to be friend with mine that always seemed upset and impatient. She was fat and wasn't the kind who would smile easily. Since I didn't like the way she spoke to us when she was supervising the recreation periods, I once stupidly asked her why she was fat. I had no intention to insult her but I really didn't like seeing her and her attitude and I wanted an answer/justification for that. All I got was a bad reaction from her and she complained to my teacher about my remark. And since, I became fat too and I think about the reaction I would have if a 6-7 years old kid asked me why I am so fat! It wouldn't be a bad reaction as I'd certainly laugh but it never happened!

Everyone noticed I had poor socializing skills and inadequate "too sustained" language level which (I managed to improve to a much lower level since!) and I hated elementary school. I also hated kids of my age which didn't seem to have anything in common with me. As years passed, or more precisely in 4th grade at elementary school, I was able to become friend with people from my classroom and my neighborhood who are still good friends of mine about 30 years later. But at first, I think they made friends with me mainly to laugh at me and it happened quite often until they grew up a bit and got other reasons to be friends with me (I think I'm a mostly good person and I can help others in various situations too!).

I also managed to work full time after I left school until 6 years ago, I had a car accident at age 32 which left me with constant pain caused by nerve damage and a TBI which was considered as mild that affected mainly the frontal lobe of my brain (there were apparently 3 places that got damage in my brain, don't know exactly what/where the two others) which did change a few things in the way I behave. I wasn't able to reintegrate my job because of the pain but also because of the difficulties that I associated with my brain injury but I didn't get much help and the auto insurance stopped to pay me 2½ years ago so I'm left with no income, a physical condition that won't let me be able to do much work because of constant pain in my right leg and mainly because I sometimes don't have appropriate behavior in stressful situations. I tried to rationalize my lack of patience and sometimes explosive behavior because of the pain I have to deal with but other people around me noticed that my attitude also changed and that my "weird" behaviors have also been much more noticeable in some situations.

I always had unique interests like collecting stuff which didn't prevent me from having a few good friends from all ages and both genders and with diverse occupations, some being very "conventional" and some much less! Before my accident, I never questioned myself too much about some of my unusual behaviors and as I was getting older, it seemed less and less a problem and socializing was getting easier but now that I look back, it's quite clear that I had more than a few characteristics that others with Asperger's syndrome seem to show, even when I was very young! I remember doing things like watching clocks for long periods, other things like fans, washing machines agitating and spinning with my mother (and my aunts!) supervising me while I was sitting on their dryer and watching what was happening in their washers of various brands and most things that turned or did repetitive motions really captured my interest. Other things like turning the lights on and off was also something for me. I often asked my father to have me up on the bathroom's counter when I wasn't tall enough to get to the switches so I could repeatedly turn on and off the lights and I didn't want to stop! I also asked to play with the dining room's dimmer (the only one we had at home) and that required that my father hold me on a stool while I was turning it, watching the lights dim and go brighter and pushing repeatedly on it to turn on and off the lights over the table!

One thing that always bothered me is my image on pictures, I can't tell if it was related or not to Asperger's syndrome but I always had a strange facial expression often with my head leaning on one side. When I'm looking at the mirror, I can position my head so I think I look normal but when I'm captured on camera, there's always something that looks wrong. I'm wondering how it was possible for me to make friends with strange expressions like that as I have always been bothered by others who had strange facial expressions or unusual body language! I remember as a teenager being told I didn't look at people when they talked to me or when I talked to them and having visual contact with people certainly distracted me and still does. The first time I was told about that was during an interview with a guy who helped for student job placement who immediately noticed i didn't look to him in his face when he was talking to me and others told me the same later but I never made a case about that. What I can tell is that I can look at people and pay attention to their expressions and notice anything unusual that could characterize them if I don't listen to what they say but looking and listening (or speaking) at the same time just doesn't seem to work, I know there's something wrong about that but I can't explain it.
I think I'm usually quite good at picking up voices and either imitating them or expecting certain intonations or pronunciation and also imitate some of them fairly well. But chances are if I do that (which implies looking at the person who's speaking), I won't really pay attention to what the person is saying and I won't be able to have a conversation with that person either.
A friend of mine now works with a former high school teacher of mine who was quite strange. I haven't talked to this teacher for about 20 years but I remember exactly how he speaks and gesticulates and I did imitate him a few times (both his gesture and pronunciation). She and her daughter (who also had him as a teacher more recently) know him well had a good laugh as they thought I got it quite right.


As a young teenager, seeing my older cousin who I suspected was having something related to Autism (I don't think he was ever diagnosed) but I knew about that since I saw "Rain Man", and I thought my cousin had a lot in common with Ray! I did see that my cousin had some things in common with me too but he was into computers (which I hated, that was in the times of the Commodore 64, Amiga and PCs with 5¼ floppy discs without hard drives!) and he certainly had a lot more trouble than I had in communicating with others (he later was a classmate of mine at high school despite being two years older as I think he doubled twice). He studied arts like me in college but then studied graphic design and I haven't seen him for years but I know he has a successful career doing logos, video games and computer-related stuff but the last time I saw him, he still didn't talk much.

Unlike him, I often talk too much and didn't have a very successful career but I managed to find full time work and I to have a decent social life (but no girlfriend either!).
I lost my job after I was diagnosed as being Asperger (I haven't worked since 2009 but still had my job until then) and while my union is still in the process of fighting that decision from my employer, I wasn't able to have any income since the auto insurance (which is public here in Quebec) stopped to pay me. I have a long term salary insurance (which covers health-related absences for periods extending over 2 years until retirement) which also refuses to pay me and I can't find any help with that. I have to rely on my credit and my parents to pay for me which is something I am not very proud of at near 40 years old.

The last few years have been the hardest for me and I really needed to focus on some of my interests to keep some motivation in staying alive with the pain I have and the other problems which make my life more complicated now than it ever was... It mostly works but my credit and my parents won't be able to support me much longer and there's nothing I can find to get me in a situation where I could be independent from my parents (and I know they also need a break).

I'm wondering if cases similar to mine are documented and if there are any resources that might help me get in a better situation. Sorry for my poor writing skills, English isn't my first language so that doesn't help...

I have an aunt who had symptoms of aspergers and ADD since childhood, and who also suffered a TBI from a car accident when she was in her 20s. Not sure which of her symptoms are from the TBI and which are from the aspergers/ADD at times.

But she has had executive function issues since childhood (difficulty organizing and making decisions) so i am guessing that is not from the TBI . Memory issues seem to be from the TBI but i think some of those overlap with ADD too. She does not have the physical issues you describe--the TBI was her only major injury in the accident.

She does not hold a job but is a stay-at-home mom. She was unable to hold a job for any length of time after the TBI--but it happened shortly after she was out of college and i know she had a lot of difficulty in certain areas of school and college from issues that seemed to be related to ADD/aspergers--and that was before the TBI occurred. So it's hard to say if her difficulty holding a job after her accident was the aspergers or TBI.

She has difficulty with organizing her home and keeping a disciplined schedule for her children. Also very fearful of any injury to her children, to the point where my children have a hard time playing with hers because of all the things her children aren't allowed to do that may be "risky." (And I think i am a bit of a paranoid mom...but i am very relaxed--even adventurous compared to my aunt!)

Therefore, depending on how your symptoms manifest, it may not be possible to tell completely which symptoms are from your TBI and which are from aspergers.

Looking at the bio you have given, and the nature of your accident, it sort of baffles me that you are not able to get some kind of support for disability from the TBI nor aspergers. Are there any other Canadian aspies who are familiar with the system and navigating it? This is not my specialty as i am from the U.S. and even here i have not had to deal with our public assistance system as insurance covers needed expenses for our issues.

Thanks for your reply. I didn't seek much for help since I got this diagnostic. I thought I was pretty good at identifying others who had some characteristics of Autism, including a former co-worker who's now retired but I couldn't tell that about me even if I was curious about that. I knew some of my own characteristics were similar but I didn't want to see them as I thought that my cousin and my co-worker were quite socially limited by their condition and I wasn't aware about some specific characteristics which are less noticeable.
I researched the net since I got the second diagnostic and some people around me pointed some things I didn't want to see so I can definitely say that I have more than some characteristics of others who are being Asperger. I thought that the fact that I was passionate about things most people don't care about and that I could care less about the common interest of other people around me (like watching and discussing about professional sports, social activities like going to bars) were just some parts of my anti-conformist personality but as I read about other's difficulties, linked things like not being able to watch and listen people at the same time and quite a few other things I did before I had my accident. I can see I had some difficulties but I was able to cope with them much better and work fairly well in a social environment which included stressful situations, which required to be somewhat organized with things I didn't not necessarily cared about. Now, I can tell I have a hard time being organized, even with things I do care about!

Sounds like you do need to seek some help from somewhere. Are any of the providers who diagnosed you able to give you information on resources? For example, a nurse at our pediatrician's office was able to give us contact information for a behavioral therapist who had been very helpful for her niece who had aspergers. We now use this therapist's services as well and she has been great.

Do you have a local public assistance office nearby? I would call them and explain your situation. They may have resources available and be able to give you a place to start in seeking help. Maybe at least some supplemental assistance would be available to you. I don't know, just guessing. I am sorry i can't be more helpful; i hope you can find someone who can.

I didn't research much but so far it seems that the services are limited to children, not so much for adults.

Maybe start a new thread with "question for Canadian aspies" or something similar in the subject line. Then ask how one goes about getting assistance for an adult in Canada. I feel for your situation but i am not a good person to ask about getting assistance. I have not needed to navigate that system yet.

I'm a Canadian aspie, and there isn't much for adults here. The Autism Society of Canada is basically a mini Autism Speaks and they dominate the opinion on autism here.

Thanks for your replies, I'll try again locally to seek for help.

But I'm curious to know more about possible effects of a TBI on a person with ASD and other things like pain management. I have a hard time dealing with neuropathic pain since I had a car accident and while it's been very limiting for me, I think it has been very underestimated by the specialists who diagnosed me.

And while I had some difficulties dealing with situations related to my ASD (which wasn't diagnosed) since childhood, I thought I had done a lot of progress in terms of social aptitudes. I still had to deal with some minor difficulties but things worsened quite badly after the accident and I feel like I stepped back more than a bit.

I have to deal with insecurity about my situation (financial, job and being constantly evaluated by people who don't really care about what they do and the results of their decisions on my life), pain, gaining a lot of weight (also partially because of the pain and the Thyroid problems that was found a few months after the accident) and other difficulties which are apparently related to the TBI. It's hard for me to isolate those troubles like my lack of control in some stressful situations, and some memory/concentration problems, which I consider minor compared to other problems I have to live with. I have a hard time organizing my things, I'm lost with all the papers I get, I loose stuff constantly (I'm hoarding stuff, I used to be quite good at classifying it but now I'm mixed up and often loose things or search them for a long time and even doubt if I really have them or not). I also forget to pay some bills (that had never happened before), I forget passwords to log on some sites unless they're very simple and I also forget that people have called or that I have to call them back (I try to take notes but I also loose them!). I forget appointments and and those I don't forget about often stress me a lot.

I also take a lot of time to organize my writing as when I read back, things often repeat and make no sense and I have to edit again and again. I've spent quite some time writing this and I still feel it's not very clearly expressing what I want to say, and I don't do much better in French (which is my first language) BTW.
I won't tell how long I spent writing my first post in this thread (I didn't realize it was so long either).

I haven't found much data on the impact of TBI on autistic people, but I do have a couple of observations.

Firstly, many of the features of autism can also be seen in some TBIs, especially if there's frontal lobe damage. A lot of the issues you describe are common in people with frontal lobe injuries. The frontal lobes are responsible for monitoring and controlling functions elsewhere in the brain, which means it's needed for things like inhibiting impulses, prospective memory (remembering to remember something at a specific time in the future), focusing attention and organizing things. The frontal lobes also play a role in the more cognitive aspects of social interaction, such as reasoning out what someone else might be thinking or feeling by understanding what a situation seems like from their perspective.

Many autistic people already struggle with these things, and frontal lobes are also the most commonly injured brain region in a TBI. So autistic people with TBIs are probably especially likely to have these issues.

Also, because autism is a developmental condition, autistic people learn work-arounds for many of their struggles, often without realizing that they struggle more with that issue than most people. However, because their performance is more fragile to begin with, anything that disrupts their abilities can cause it to come crashing down. It's possible you may have had some mild frontal lobe issues before your injury, and the TBI took away your ability to compensate the way you used to. Alternately, you could have been one of the small subset of autistics who have no frontal lobe issues, and your frontal lobe issues all result from your TBI. In either case, not only do you have poor frontal lobe functions, but you also haven't had a lifetime to learn how to handle them.

Your chronic pain likely also plays a part, because pain is a potent stressor and drains your mental energy. As a result, you have fewer cognitive resources left to deal with managing your difficulties. Even without a TBI, a person in chronic pain is likely to be irritable and have trouble concentrating. A frontal lobe injury just makes it even harder to control that reaction.

In general, there are two approaches to dealing with a neurocognitive issue - remediation or accommodation. Remediation means systematically practising the skill until it gets better, like a dyslexic person making a point to read on a regular basis so they'll learn to read better. If it works, this is the ideal solution, but it doesn't always work and it takes a lot of effort. Accommodation means doing that task in a different way, like a dyslexic person listening to audio books instead of reading. It doesn't make the issue go away, but it does make it have less of an impact on your life.

Do you have a smartphone? If so, you can use it for accommodations. Try and see if you can find some apps that can help you. For example, I use a scheduling app that plays a particular sound just before I need to go and do something, and I always enter appointments into that as I make them (I don't have a TBI, but my autism has affected frontal lobe functions particularly heavily). If you don't have a smartphone, you can try a beeping watch or an alarm clock or something, but those are more limited. I've also found that with time, I start to tune out the alarm sound, so I need to change the sound it makes every couple months or so.

As for remediation, if you can get training in mindfulness meditation, that could really help with both chronic pain and frontal lobe issues. You can look for stuff online, or see if you can find a class somewhere. Yoga and tai chi include mindfulness elements. The tough thing will be getting enough practice, particularly since frontal lobe issues can make it hard to stick to a schedule. I've found having a set time and place to do something and someone else who expects me to do it with them works a lot better than trying to just work on something on my own. If you can't get into a mindfulness class, maybe getting a friend or family members to meet with you regularly to practice would help.

Thanks for your detailed answer. I do have a smartphone and I do use it sometimes to notify "important" things but I hate relying on it for things like that and for the more informal stuff like visiting or calling back friends, I never tried...

And I sometimes forgot about notifications if they were too early. Or I noticed I had no way to respect these as I had another last minute engagement or I was too far away to get back in time... And quite often, I have absolutely no problems remembering things so I am still tempted to rely on my brain rather than relying on any kind of agenda (I never used an agenda, I did note things when teachers asked to when I was attending school but never looked at it afterwards).

For the last few weeks, I have been trying to remember the name of the psychologist I have an appointment with every Tuesday and I was too shy to ask her or too lazy or mad at me for not remembering that to search my papers as her name must be written somewhere... But I didn't forget a weekly appointment or the hour since she stopped changing the hours. I remember some things that we were talking about (I do forget some), I know where she lives, have no problem remembering that her Honda Odissey is starting to show rust around a door handle despite being fairly new and I do remember the names of other people I haven't met and haven't even talked to...

Last edited by PR on 25 Nov 2015, 2:04 pm, edited 1 time in total.

...I don't have very much . I don't have a smartphone .