Over 30 years old with Aspergers Syndrome, How do you cope?

reply to post by R6A6W6


That's a rather weak argument.

www.ncbi.nlm.nih.gov...

This paper summarizes data from a review of neurofeedback (NFB) training with 150 clients with Asperger's Syndrome (AS) and 9 clients with Autistic Spectrum Disorder (ASD) seen over a 15 year period (1993-2008) in a clinical setting. The main objective was to investigate whether electroncephalographic (EEG) biofeedback, also called neurofeedback (NFB), made a significant difference in clients diagnosed with AS. An earlier paper (Thompson et al. 2009) reviews the symptoms of AS, highlights research findings and theories concerning this disorder, discusses QEEG patterns in AS (both single and 19-channel), and details a hypothesis, based on functional neuroanatomy, concerning how NFB, often paired with biofeedback (BFB), might produce a change in symptoms. A further aim of the current report is to provide practitioners with a detailed description of the method used to address some of the key symptoms of AS in order to encourage further research and clinical work to refine the use of NFB plus BFB in the treatment of AS. All charts were included for review where there was a diagnosis of AS or ASD and pre- and post-training testing results were available for one or more of the standardized tests used. Clients received 40-60 sessions of NFB, which was combined with training in metacognitive strategies and, for most older adolescent and adult clients, with BFB of respiration, electrodermal response, and, more recently, heart rate variability. For the majority of clients, feedback was contingent on decreasing slow wave activity (usually 3-7 Hz), decreasing beta spindling if it was present (usually between 23 and 35 Hz), and increasing fast wave activity termed sensorimotor rhythm (SMR) (12-15 or 13-15 Hz depending on assessment findings). The most common initial montage was referential placement at the vertex (CZ) for children and at FCz (midway between FZ and CZ) for adults, referenced to the right ear. Metacognitive strategies relevant to social understanding, spatial reasoning, reading comprehension, and math were taught when the feedback indicated that the client was relaxed, calm, and focused. Significant improvements were found on measures of attention (T.O.V.A. and IVA), core symptoms (Australian Scale for Asperger's Syndrome, Conners' Global Index, SNAP version of the DSM-IV criteria for ADHD, and the ADD-Q), achievement (Wide Range Achievement Test), and intelligence (Wechsler Intelligence Scales). The average gain for the Full Scale IQ score was 9 points. A decrease in relevant EEG ratios was also observed. The ratios measured were (4-8 Hz)(2)/(13-21 Hz)(2), (4-8 Hz)/(16-20 Hz), and (3-7 Hz)/(12-15 Hz). The positive outcomes of decreased symptoms of Asperger's and ADHD (including a decrease in difficulties with attention, anxiety, aprosodias, and social functioning) plus improved academic and intellectual functioning, provide preliminary support for the use of neurofeedback as a helpful component of effective intervention in people with AS.

Symptoms can be dramatically reduced - no drugs necessary.

Originally posted by hqokc
Wow, I didn't know there were so many doctors on this site who could give you a second opinion.
Im constantly amazed by the lack of sympathy and civility on this site.

DITTO! I've run into this too. I have Sjogrens and have some really miserable days because of it .. not to mention the mental stress. And I get people here telling me it'a all my bad attitude ... totally dismissing the medical aspects and the chemical changes that happen in the brain .. etc etc. Sucky cold people. I wouldn't wish this on anyone but to be honest, some days I'd like to 'share' this with them for just a day ... they'd change their tune.

I turned 50 last week and was diagnosed with ADHD Inattentive type/Autistic Spectrum/Aspergers 6 years ago now back when I was 44.

The difference post diagnosis has been HUGE.
The best way to describe it is, once you know your limitations you can actually work within that parameter to accomplish things that build your confidence and keep depression at bay.

I kept failing at things as I had no idea there were many things I was attempting to do that were beyond my ability.
I can see that very clearly now looking back.
I've since done a total re evalution of what I'm capable of/good at/have a reasonable expectation of a positive outcome as opposed to flailing about and feeling like I was drowning in the sea of life all day, every day for 44 years.

How do I cope?

Since my diagnosis, I can now holiday and travel by taking into consideration pertinent factors such as the following for an example...

1. I have to travel alone.
2. I can only fly on red eye flights as there is less people around and hence less confusion.
3. I need to pre plan my itinerary right down to the smallest detail and cover EVERYTHING from if I'm out and about as to where the public toilets are to where the police stations, hospitals to local doctors surgeries are in case I need it. Many other things are covered and it takes a lot of time to do hence why I travel alone as it would drive a travel mate insane!
4. I can only do short trips of the equivalent of a long weekend.
5. I need to keep active and do touristy type things rather than visit friends or family and spend days on end socialising.
6. I have to travel very early before peak hour or very late after peak hour on public transport which can be a nuisance and a little dangerous sometimes but it's the only way I can get out for the day.

I can't afford to travel all time, but I've adopted the same coping principals in my city and am getting out more now than I ever have.

So this is just one example of how knowing yourself and capabilities can actually expand your life.
I'll state now that I never went on Holiday EVER previous to my diagnosis as I had no idea of how to set it up where I could actually get through it and ENJOY it without major meltdowns.

The second is my romantic life needed a rehaul as well regarding what I could reasonably handle and what had to be put to bed permanently.

1. I now live alone and am incredibly happy with it.
2. I can't handle conventional , live in type relationships.
3. I get the most enjoyment and happiness from unconventional relationships and have decided to stick with that lifestyle for my sanity's sake.

And the other main adjustment has been family and friendships.

1. I only go to family get togethers IF I WANT TO and if I feel I can make the space I need, not because it's expected or I'm under pressure to do so. That always ended badly.
2. I no longer take responsibility for those around me and their inability to GET IT. I've explained what I have and how it effects my life enough times. So I've moved on and just expect my wishes to be respected. It's no longer up for debate. I no longer care what people think after decades of stressing about it.
3. I got rid of old friends and have established new ones through my volunteer work where they are aware of what I have and an understanding of what the issues are. And are incredibly forgiving of my stuff ups.
4. I realise that there are those who think I'm strange who may not want to get involved and I respect that. As there are people I avoid who I can't handle too. So I've adopted a live and let live attitude and the only ones who count are those who are around who can appreciate me for what I am and what I can offer.

I'm no longer gainfully employed but do volunteer work and other casual type work when I can.
I don't take medication but have medicated my whole life with cigarettes and loads of coffee.
I'm continueing this on as it's a really a matter of choosing your poison.
Meds like dexamphetamine and anti depressants can kill your liver long term and cigs and coffee can kill your lungs or kidneys. But I'm practically catatonic without it. So the caffeine and tobacco I use is medicinal.

Thought I'd share all that in case it's of any use to others. You really have to have Aspergers and be on the Spectrum to know what kind of living hell it can be. Lots of love to those of you who have it. I understand totally what you are going through being someone like yourself.

8311-XHT, I don't find Sheldon from Big bang theory offensive. Sure he maybe be arrogant and condescending but when you have AS, high IQ coupled with a need to be understood AND you let the AS all hang out, thats what you get. Personally, I wouldn't change him because if the general public finds out what Sheldon has, a normal aspie won't seem as bad. At least he's not the Rain man or House, haven't watched House to find out why the entire show seems to be a huge arguement though (I couldn't stand it).

reply to post by newsoul


Thanks for sharing this. It's good to hear of people going through similar things, as all too often these things are ignored.

My son is 10 and he has been going through tests for possible ASD since 4, one psychologist said ADD, another said High Functioning Asbergers. Also with Enhanced Sensory Perception.

The ESP I agree, and possibly the HFA.

He is very intelligent and can work computers and many technical things with more skill than a 30 year old, his vocabulary and imagination are awe inspiring. He writes stories and animates them on computer, he knows practically everything there is to know about certain subjects whilst some others he just hasn't grasped yet,like math, though he is vastly improving.

He is kind, loving, affectionate, funny and wants to have friends, though his social skills just aren't tuned to the typical boy his age. He is tall, good looking, popular, though he isn't interested in most sport or the aggressive attitude this often brings. Mostly he is like a normal child.

However it is in certain social situations or even just busy places where he can't seem to relate to the environment and this has caused many meltdowns and sometimes extreme verbal rudeness aimed at me (presumably as the nearest person) and I have even experienced physical violence from him for example, saying no to something he wanted from a store. Keeping him calm during these meltdowns sometimes isn't easy, it's like damage control and I have to think carefully about everywhere he goes as to how he might react.

Afterwards he justifies it as wanting his own way though feels bad about verbally or physically attacking me.

I would never allow him to have medication for this as he is so wonderfully sweet and unique and his personality is one of his main attributes though I do worry a bit about the future when he gets taller than me. I hope he grows out of this behaviour and we find some way of him coping with his condition.

reply to post by Flighty


Thanks for sharing this, it is an insight. My son possibly has High Functioning Aspergers and this looks similar, especially the travelling bit.

reply to post by Evil_Santa


Thanks, this is interesting, I will look into possibilities of treatments in the UK for my son.

Thanks for creating this thread, I will actually read all the pages, eventually.

s&f

reply to post by 8311-XHT

Everyone must have seen the show The Big Bang Theory? As an Aspie I find that character on there very offensive.. do other Aspies feel this way? I am honestly surprised people haven't complained about it. He seems like a text book Aspie to me.

I really like the Big Bang Theory. I find the humor easier to understand because it all seems to be on my level and because other people are watching the show, they are learning about different peoples behavior.

I get where you are coming from though because if his character does have AS then people should not be made to laugh about his behavior. You have a good point there

Why do you guys call yourselves Aspies?

It's like calling people with Downs Syndrome, Downeys.

Frankenchrist, probably because its shorter to say then "people with aspergers syndrome". With downs, you can see it, its known the person has it, unless its over the computer, then we can't see it but its not talked about as much anyway. I don't find the shortened term offencive.

Its better to get people used to saying that, then to "assburgers".

I posted some thoughts and my own personal experience with my aspergers here...

www.abovetopsecret.com...

If anyone wants to know more, drop me a message.

Edit to add...

Obvious Troll is Obvious.

reply to post by 8311-XHT


You sum it up beautifully,we dont always see how much work it is going to take to teach a 2D thinker what we have already learned,it is a tremendous amount of work to overcome all the barriers to learning the majority of people who happen to be 2D thinkers are dealing with,they have already suffered the loss of 3D visual thinking which is their birthright..

I would never ever go back to that type of thinking,I myself was abducted as a child and had a nasal implant put into me that forced my pineal gland to remain open and rocking long past seven or eight when it was supposed to shut down and force me to become a 2D thinker like the majority of us are.

You see,all children up till around seven or eight are 3D visual thinkers because we are ALL born that way,then we LOSE this inborn ability at seven or eight when our pineal gland shuts down prematurely,causeing us to attain 2D perspective or way of thinking.If you want to help your kids either turn theirs off and doom them to a black and white 2D existance,or turn yours on and enjoy full HD color television.There is your answer and your path,you are welcome.

The pineal glan connection is there,and large corporations already know how to cure most diseases,and they also know how to keep the pineal gland activated longer than what we think is normal,genetisists are unlocking the padlocks intentionally written into our DNA.You want to really help,then watch some youtube videos like Thrive that show you where to find the people responsible for hideing this important genetic and medical information,get active and involved,help humanity force these important things out into the public domain,use you fiscal buying power and decision makeing ability to help the global disclosure movement.Dont believe we havent got cures for all major illnesses,because we do,dont believe we havent cloned humans because we have,look harder,and dig,deeper,get involved beyond your current boundaries.Maybe it would be easier for you to take a pill and think like an aspie??In fact I guarantee you would never willingly go back.

Life is only hard as an Aspie if you are struggleing to force yourself to become REGRESSIVE and to unlearn forward thinking ,it is only hard if you undervalue your own perspective,whos to say that all of the social interaction isnt unhealthy??The emotional games and lies and misrepresentations,it is like an emotional orgy when many 2D thinkers gather together.And improperly managed emotions catalyse almost all of the evil in our world,so it seems sensible that when large groups of 2D thinkers gather in a group that the sheer volume of poorly managed emotional input and output will eventually cause a miscommunication or an arguement or a war ,right??


Its like the example I read here that really hit home,when I was a kid if you said hi,I said hi back and we were on the same page,but if you said hi,how are you doing today,and expected me to simply answer in part"hi"and then ---forget---the second question of "how are you doing today",you were in for a surprise because I would proceed to answer in full,I didnt understand formality because formality and informality are really justifivations for lies and misrepresentations,period.

Because 2D thinkers are emotionally catalysed thinkers and emotions are constantly changeing ,2D thinkers need to have a code to give them common ground or to allow them to all communicate together,this code is called a lie,they constantly lie to have their emotional feedback fit the dynamic they are in,and as long as everyone keeps lieing faithfully they can communicate somewhat,with 3D thinkers like Aspies we dont need this crap because we all see the same video,there isnt this vast difference in what we all see,so we dont need a constant barrage of changeing and adjusting lies to communicate or function in a group,in fact we need truth,and this usually means brevity.We are really overwhelmed by the constant lieing and we dont understand it and cant explain it to 2D thinkers,remember they are all balancing on an emotional tightrope while they try to syncronise their thoughts and perspectives by filling in the hollow empty spots with agreed upon lies.We see it like it really is as kids do.And we also see right through lies and bad people as kids do because we cant be lied to through agreed upon emotional misrepresentation.

Pimsleur,look him up,he developed a way to learn to speak any language in a VERY short time,he was a 3D thinker,he would have been called an aspie,and he devised a method of teaching 2D thinkers to become 3D thinkers long enought to functionally learn another language in only weeks.Trust me on this and research him---this is the key you need to grab onto so you can learn to think like your kids,just learn to learn like he teaches you and as you yourself experience what your kids see every day you will literally break into tears.Then dammit help support the truth movement,the global movement to disclose the humanitarian cures and data corporations and government and religons have hidden from all of us for hundreds of years.We are all responsible for our childrens futures and this means standing together and demanding global data disclosure.

Look this guy up and learn to learn as he teaches you,then you can decide which perspective you like better,if you learn swahili in ten days you owe me ten bucks,and your kids a lifetime of apologies.

Originally posted by Auricom
However, I learned not to care.

Same here... or maybe I never cared?

I first heard about Asperger's at the age of 27. I read about it. Cried. And realised I'm not the only "weirdo" in the world. Hahahahaha!

Which my doc confirmed later.

Do I wish I'd known earlier? Maybe. But I do fear it might have done more harm than good. Would my teachers have been tippy-toeing around in the fear of upsetting "the poor autistic child"?

I've always been a loner. But unlike a lot of aspies I always had tons of friends. I never seeked out any of the friendships myself, but people were always attracted to my "non-caring" ways. They liked the fact that I spoke my mind (or didn't speak at all), whether that was for the good or the bad.

I believe in "what's right", and will always speak my mind, if I feel something is not right. I don't care what people think of me, nor what people tell me... but I've always had a terrible dread that people speak about me. Not that they're slagging me off - I couldn't care less what they think of me! Hahahaha. Just a general fear that people show attention to me. Preferably I would like it if I was non-existant in people's worlds unless I was there... and even then I am happy just being left alone.

I do however wish my mother had known. Maybe I wouldn't have been such a hideous dissappointment to her then. My mother is "the life of the party", always wanting a house full of laughter and fun. Oh how she would have loved it if I'd shared my hopes and dreams to her, told her about crushes and discussed female issues with her. She never got the daughter she must have wanted, and I just felt more and more distant to her the more she tried to push me into being her "pal". Luckily my mother now has her grand-daughter (my brother's eldest daughter), who is a perfect "daughter" to her. My teenage niece will come flying through my parents door, sobbing in my mother's arms if her heart's been broken, or dancing about telling my mother how happy she is.

I was 24 when I met my husband, 12 years on we're still together. He is perfect for me. He let's me be "strange" without freaking out. He does find it terribly embarrassing if I have a hissy-fit in a shop though. Hahahahaha! He doesn't mind that some days I'm not interested in talking at all, nor that the next day I might be obsessed with something and talk non-stop about said thing.

Growing up I often felt "strangled" and "suffocating", not due to anything anyone ever said or done, but due to my own limitations and the environment I was in (I still remember in high school a teacher read out loud an essay I'd written, as he thought it was so good he wanted to share it with everyone. After class I went up to him and told him if he ever did that again I would never set a foot in his class again. He was shocked and mortified. Probably saw it as a "threat", although I never threaten, I explain what will happen, and I stick to it. He never read anything I did aloud again, but he did however always look at me like I had three heads).

Now I'm too old and wise. Hahahaha! If I don't like the people or environment I find myself in, I simply leave.

I don't like hurting people, but have realised that my off-hand ways often do so... everyday is a struggle to keep my mouth shut. There's no struggle to "fit in", I'm lucky, I've never had that urge.

I do however feel much happier having been able to put a word to how strange I always was compared to everyone else. At parties when everyone else was drunk (and so was I!) instead of trying to be cool, or attracting the guys, I would happily find a book (if at someone's house) or find someone to discuss cats/religion/pick-your-subject with.

I like me. I have no intentions of being anyone else but me. And I am enough for me. I don't need anyone else. I am however very glad I met OH, he's a wonderful man. He loves me, and I love him - which is great. But I have no need for neither friends, children, or people I meet to like me.

Knowing I'm an aspie hasn't changed me, but it made it so much more easier for me to understand my sometime irrational behavior in certain situations. I had already long before realised my limits, and thus adjusted my life to those limits... and knowing the limits where there, when feeling brave, try to overcome them.

reply to post by R6A6W6


Glad you are finding definition with your life.

Big thread, haven't read it all through yet.

I'd talking about my coping strategies, but I'm really finding it awkward discussing this here. (TMI)

But great for you and everyone else.

Really.

Do you autists have thought's about killing people?

These sorts of threads is why i like ATS!

respect and thanks to all of you who share their personal experiences.

It s important and good to read from people who go through similar stuff which the 'normal' population cannot even understand. I ll have to go through the whole thread.

For now, just some remarks on the recent posts:

About Sheldon from The Big bang theory: i love the show (one of the few TVshows i watch), and i love the Sheldon character. being officially diagnosed with ADD, i see so many Asperberger aspects in myself. thats why i can relate to Sheldon, and i rather laugh about myself, then about him. I think as well it s a good thing to have an Asberger in the public view, just so that people realize there are people like him.

Then again, we would have serious problems, if he would be my roommate.

I see characters like the jersey shore as offensive. because this kind of behaviour should not get any air time, and the sad thing is they not even acting.

I am drifting off topic.

But speaking about public perception, i really hope that the recent school shooting does not move the public perception to Asperger equals violent homiciders. I fear that could happen, and make life for Aspergers more difficult.

This thread is a real diamond.
I just read it through, the whole thing. And i feel like i found home.

so many things i read, i experienced myself:

- i started to read two different newspapers at the age of 6, discussing world politics with adults
- had problems in school because i was teaching the teacher (even had to change school over arguments with teachers)
- always wanted a relationship, but after a couple of month i found it too narrowing and broke up
- i speak 3 languages fluently and can have basic communications in 3 other languages
- always started huge projects, barely finished them
- everybody who sees the family album asks me: why you never smile? - til today, i did not know thats an aspi symptom!
- i can t stand the normal smalltalk, but can get into very deep discussions when i find somebody likeminded
- sucked at math, but blown everbody away when it came to probability calculations or Series as the fibonacci series
- always was friend with the 'nerds'

I had to laugh at the expressions 'little professor syndrom', since 'the professor' was my nickname in school. As well the 'wrong planet syndrom': E.T. Was one of the first movies i ve seen in the cinema, and could relate to him so much. The poor little fella who landed on the wrong planet and wanted to go home - that s me.

So, again thanks everybody for sharing all the inputs.
special thanks for mentioning the wrong planet website, i had a quick glimpse, and i know i will spend a lot of time there.


One of the questions that stayed in my head, from the person who is studying conspiracy theorists (sorry, forgot the user name). The question was, why do some people continue to perpetrate/defend a hoax, even when there are hard facts (imdb link showing the actor and scene of a movie on ufos)?

I had phases like this, when i was so close minded and egocentrical, i just wanted to win the argument. No matter how fool my arguments were. I could even argue against my own believe system, just because my ego would not let me say, yes you are correct, and i was wrong. - silly behaviour i know, but a lot of politicians have exactly the same behaviour and life of it...

My question would be, what drives the bullies? What is it that makes them come to a thread like this, with no knowledge of the topic and going at people?


Oh and another question, anyone rmembers the title of this documentary about savants? I ve seen it a couple of years ago, it was featuring a guy who was able to learn languages, such as icelandic in 2 weeks. It featured the guy who flew over Rome and painted the whole city including every miniscule detail. Another guy who was a math genius, who saw numbers as colored 3d shapes plus the guy who was able to read 2pages simultaniously while answering questions like, what was the name and birthdate of queen elizabeth cousin 3rd grade?

If anyone knows the title, please let me know. I d like to see it again. and i guess it would be a great input for this thread.

CU soon