Living with Asperger's Syndrome

[kaykay]

In light of some recent events, I just wanted to say something about this.

Years ago my sister passed away and I took custody of my niece when she was nine. I always knew she was "different" but no one could put their finger on it. Keep in mind this was years ago before much was known about the different levels of autism.

Raising my niece was one of the hardest things I have ever done. There were times I though I just couldnt do it any longer.

When she was about 13 I finally found an article with her exact symptoms. It was on Aspergers Syndrome and fit her to a "t". I scheduled Dr appts and even the Dr's knew very little. She was finally diagnosed at 14. The diagnoses though really didnt help a whole lot as still little was known. Thank god doctors now know more and I hear treatments are now better.

One thing I know after living it--you cannot argue with a person with Aspergers as they will not ever see your side of the argument--and you will NEVER convince them they are wrong. And they will never "drop it". As long as you keep going--they will keep going. Eventually you will wear down before they ever even come close. I remember one day during a heated argument taking my niece outside and asking her what color the sky was. She responded it was various shades of blue (LOL cant just say blue) I said thank you. And she said why did you ask me that--you know what color the sky is? I said I just wanted to know that there was something we could agree on! We both laughed so hard.

My niece had such a hard time even when she was younger as other kids refused to play with her. If you didnt play a game EXACTLY as she thought it should be done - then the game couldnt be played.

Everything in my nieces world is black and white. There is no gray. There is nothing subtle. Something is or it is not. She never picks up on body language, and only shows two emotions--happy or mad. No in between. She cant stand to be touched, hugged etc. She couldnt even show emotion at her mothers funeral.

I know she loves me (even though she cant say it or show it) but that only came after years of trying to understand her and for me to step into her world.

On the plus side many like my niece are amazingly intelligent. (savant) My nieces math teachers could not keep up with her and she actually spooked a couple of them with her knowledge that would just come out of nowhere. In college--by her second year- she was having papers published with doctors on various bio and chemical research. Her future was so bright. Unfortunately the Aspergers got so bad during college she quit. Some of you may remember a few years back when I went tearing to her college in Illinois to get her. She had almost died by starving herself, because her social skills were so lacking that she would not reach out to anyone to help her when she couldnt find my phone number. Still breaks my heart.

Strangely many are very artistic and my niece is no exception. She can draw the most detailed absolutely correct drawings of complex buildings you have ever seen. But it might take her a year to do it.

So just know it is real and many of the things they do, they simply cannot stop themselves. Trying to argue with a person with this syndrome is a lose lose situation for everyone. Be the bigger person and walk away.

Sorry this is so long but having lived it, I think a lot here do not understand how this syndrome works.

 

[Jill]

I think that one on one or in person, it might be easier to handle -- or understand -- some of the recent "forum situations". But, honestly, I feel like the situation I am aware of is not fair to the other members.

There has been problem, after problem, after problem. Closed threads. Arguments. Hard feelings. And for a long time, not only recently. I just don't know how a person can participate at all with the threads that have been initiated and not have it go south in very short order... maybe we should either just lie / affirm bad ideas as good on those threads or post benevolent smilies.

It's felt to me like many of the posts / topics were intentionally made by the member I'm sure you have in mind purposely to instigate arguments. For example, I think just yesterday or the day before, a topic was created to address some photo gallery comments a member or members made LAST year... I didn't see any indication that anything had been said since last year, until this essentially inflammatory thread was instigated (and promptly closed). Frequent "flame away" remarks also make me feel like it's a situation of the member intentionally soliciting for arguments.

We've got to also recognize that people read current LB threads and search old LB threads to educate themselves and if these threads are on the "real" parts of the forum where people are trying to learn and improve their horse skills, it's a disservice with the way I've seen nearly every one of these particular threads I am thinking of go. I always think when I'm posting on a thread how the answer may be helpful to others, too, not JUST the OP.

This may be one of the least popular things I've said on LB, but that's the way I see it.

 

[Matt73]

Kay! Thank you for writing this. From my nephew Bradley, and for Molly's Run Mini's. I, recently, saw her signature stating that she has recently been diagnosed. My nephew has those exact symptoms and, after intense therapy, has been diagnosed with Asperger's over the past year (he is 14 now). He is now in a better school (one that has a special program for Asperger's) and is thriving. He is highly intelligent and, like you said, can have a hard time "dropping it" etc. I'm going to forward your post to my sis. She'll love to see a well written, lay-man's description of the syndrome.

 

[ohmt]

Thank you SO much for posting this kaykay!

I understand the symptoms of Aspergers as I have a cousin with it and my mother spent many nights talking with my aunt because she would get so frustrated and upset that she would call crying. (ETA: I love my cousin to death and she is one of the best friends I have, but she is very misunderstood by many)

There have been a lot of very rude comments on some threads by adults that should know better. Hopefully they will read this and understand a little better.

 

[laughingllama75]

My eleven year old nephew was diagnosed when he was 5. A lot you describe fits him. And he speaks of himself in the third person. But a great kid, loves the mini's (one is particular more than the others) and we all feel so bad becuase the other kids want nothing to do with him.

 

[kaykay]

Matt please tell her to email me anytime!

Jill I totally get what you are saying too. Remember there are a lot of kids (not just kids with Aspergers) That will do anything to get attention. Does not matter if it is good or bad attention its still attention that they crave. We have all seen that over the years with lots of kids here.

I am just hoping maybe some will have a better understanding of what Asperger's Syndrome means--and have more patience. I had to tell my own kids (believe me it was just as hard on them) to state your case once, and then walk away or drop it.

So I am not saying that no one should voice their opinion, after all--that is what a forum is about. But just state your case and move on, because you will never change their mind ever.

Once I finally understood this everything got better for all of us including my niece.

Molly please understand I am not trying to talk about you like you are not here and I hope you dont take it that way. But when I read your signature it made perfect sense to me.

I think there are a lot of older adults with varying degrees of this that never got diagnosed because so much was unknown.

This comes in mild to severe and my niece is severe. She will never be able to drive (because she cannot multi task) She will probably never get married and have children. I remember when she moved back in with me after the college disaster and it was probably the first time in all those years that I saw her express sadness. She said to me "aunt kay I am never going to be married and have kids am I?" Breaks my heart now remembering it. I told her that nothing is impossible and one never knows what the future holds. But the fact that she cannot stand to be touched and cannot show real affection predicts that will probably never happen for her.

There is just so much to this syndrome that I cant even put here or I would be typing for days.

For families dealing with this I highly suggest Temple Grandins book. It is just fascinating! I made my niece read it when she got old enough. temple grandin

 

[HGFarm]

kaykay, thank you SO much for posting and I hope that folks will understand and remember that not everyone perceives life through the same glasses.

One of my neighbors has a daughter with Asperger's and she has gone through the same hellish life through school and as a child. She was not diagnosed til about 14 and I am sure there are permanent scars that will never go away, on top of just trying to deal with life every day.

 

[Marty]

Patience and understanding. The world should have more of it.

 

[Marsha Cassada]

For families dealing with this I highly suggest Temple Grandins book. It is just fascinating! I made my niece read it when she got old enough. temple grandin

Did not read the book but saw the movie and it was very very good! I wondered how closely it followed the book.

If I ever feel the need to argue hopelessly with someone, I just call my mother...

 

[Reignmaker Miniatures]

So I am not saying that no one should voice their opinion, after all--that is what a forum is about. But just state your case and move on, because you will never change their mind ever.

Autism spectrum disorders aside, this is good advice for how to 'get along' on a forum IMO. Too often threads deteriorate into extended discussions about one small point and it seems the writers can not find a way to let go of the need to make sure things are done 'the right way'. It ends up more like watching a episode of Jerry Springer than a thread that offers any real information.

Just a side note that Autism covers a wide range of conditions and differing severities of symptoms. My children went to school (a small elementary school of only about 150 kids) with 4 different students with Aspergers each with different issues to deal with but all very similar in that they lived a very lineal life. For them there was only one path to each place they wanted to go. Side trips were not an option. My own daughter has an entirely different form of Autism - Angelman's Syndrome- a condition closer to what most people think of when they imagine Autism but still having its own unique symptoms. There were some very tough times for her and us while she grew up, and she will always struggle with social skill issues but she has become a loving and affectionate young woman in spite of being the typical autistic infant who shrieked, sobbed and struggled to be free if held close even by her own family. So if you are one of the people who believe they should just TRY harder to get along, let me just say, these people give everything they can give to fit into the world they are given. They don't intend to upset those who are just trying to help them see some 'truth' they just have no other way to respond. No one works harder to fit in and be 'just like every one else' than they do and they often succeed so well that people don't realize how hard it is for them to maintain that appearance, and get annoyed when they slip. It is not easy to SEE their particular problems so they get no sympathy and darn little support from the world like they would if they lived life as a blind person or some other easily seen disorder. So please, if someone seems too stubborn or to quick to argue with those who are more experienced and informed, take Kay's advice and state your view once and then let it be. You and they will be happier for it. Just my 2cents.

 

[Molly's Run Minis]

KayKay, i dont know how to thank you enough for making this thread. Reading this you practicly have me in tears of graditude.

i lived for nearly 16yrs not knowing i had Asbergers and it was heck. I never made any friends at all. My grandfathers draft horses were my only friends.

yesterday, i almost felt like people were picking on me because i didnt like geldings and i was also quite angry at the time because an ex friend posted something very personal about me on facebook and i had to put my cat, whom i've had for 6yrs, down so i realise now i should've never been posting in the first place.

Honestly, i dont mean to pick fights, i know it may seem that i do but i try not to. i honestly didnt see anything wrong with my posts yesterday, even after re-reading them.i was actually kinda surprised when rabbitsfizz posted what she did, because i didnt think i was being rude. And when i posted that thread about the comment i recieved nearly a year ago i wasnt looking for attention, but just imagine if you had been gone from the forum for a few months and then came back on to find out that someone had called you an idiot. i wasnt very happy and felt like crying and leaving all over again.

I always try not to mention Asbergers though, because i'm afraid that someone will think 'oh she's just trying to get sympathy and get off easy" but thats not true. i cant tell you how much i wish i didnt have it. this disease has screwed up my life and my future. i cant go to school, i can forget college, i'll never get married or even have a boyfriend, all i have is my horses. and everyday all i think and worry about is what my future will be and if i'll be able to make it on my own. its living heck.

anyway, i'll try harder to be better on the forum. i promise i will. i'm not here to start fights, i swear, i'm here to learn about minis and showing/driving

 

[Reignmaker Miniatures]

Hang in there Molly!

Just do the best you can each day and let other people worry about how they react. Don't give up hope for your future either, there are people out there who's ability to interact on a social level is MUCH MUCH worse than yours and they find friends and happiness (my daughter is a good example, she is unable to speak often strikes out physically in frustration and is still a vibrant member of our family with a large circle of friends. She even has several boys who think she is pretty special... makes her blush when I point that out

) Just be kind to yourself, forgive yourself your shortcoming and try to focus on your strengths,the rest of the world will be SURE to tell you of your failings so you needn't bother to keep track of them

. Let yourself be HAPPY as much as possible, your life is a gift and so are you.

 

[Molly's Run Minis]

Hang in there Molly!

Just do the best you can each day and let other people worry about how they react. Don't give up hope for your future either, there are people out there who's ability to interact on a social level is MUCH MUCH worse than yours and they find friends and happiness (my daughter is a good example, she is unable to speak often strikes out physically in frustration and is still a vibrant member of our family with a large circle of friends. She even has several boys who think she is pretty special... makes her blush when I point that out

) Just be kind to yourself, forgive yourself your shortcoming and try to focus on your strengths,the rest of the world will be SURE to tell you of your failings so you needn't bother to keep track of them

. Let yourself be HAPPY as much as possible, your life is a gift and so are you.

your going to make me cry again lol

thank you

 

[kaykay]

Molly I am so glad my thread did not upset you!

First know that we all have issues!. I have been known not to back down from an argument myself so I need to remind myself to walk away.

And know that you do have a future. My niece is able to live alone and support herself and she does finally have 2 close friends. She loves living in the city so we got her an apt there where she can take the bus to work and home and anywhere else she wants to go. I am still hopeful that someday she will go back to college. Shes 26 now and I keep telling her it is never too late. We just remind her a lot to let us know when she needs help or to tell us before she gets overwhelmed.

I know it was a huge relief for my niece when she found out why she was so different from her peers. It also gave her coping skills to overcome some of her own obstacles.

Please always reach out to someone as I never want anyone to go through what my niece went through when she was afraid to ask for help.

I wish my niece liked horses!

 

[sfmini]

Molly, you are not alone, I am a mild aspie and just knowing about it has made a difference to me. I now understand why I think and act differently from others, and also why my career is such a good fit (IT).

The computer world is great because programming is black and white, true or false, no maybe. Now that I recognize it in myself, I am kind of entertained and feel more understanding of my co-workers. Lots of aspies in IT.

I have discovered a group online just for aspies called GRASP, and they have a sub group for women. Very interesting, and there are a lot of married people with children.

Good books are Look Me In The Eye by John Elder Robison, and of course Temple Grandin's books.

 

[MindyLee]

Wow this is very interesting and makes me wonder if I might just have a little bite of this myself. I have found it really hard for a lot of reasons just like some of the posters abouve have viewed. If I had insurance I would go and ask my Dr about this and see if I may have it too. THANKS for the post as it makes me wonder if I have this, or am I just a hot head! LOL

 

[kaykay]

Hi Mindy

As Jody shows this comes in so many varying degrees and for sure my niece is severe. She also has "tics" that the more severe cases get, and has an odd affect to her voice.

I have met a lot of adults over the years who I think probably have it and dont know it. Once you have been around someone with it--it gets easy to spot.

Social skills is a big part of it. Most really lack social skills, cant read body language etc. This is why they have a hard time making friends. Less severe cases are just kinda known as "quirky" people LOL. A big one is personal space. My niece was always invading peoples personal space. Most of us are just born knowing not to stand too close to people when we talk, but she would get right in peoples faces. We had to teach her that people have a 2 foot circle around them that you dont invade.

Inappropriate emotions--My niece will laugh if someone gets hurt, but will rarely ever cry unless she cries from anger.

Schedules oh the schedules. My niece would get so upset if we didnt eat right at 5:30 every day. Lunch at 12 without exception. If we tell her we will pick her up at 230 and we arrive at 235 she is furious.

And the big thing is not wanting to be touched or touch other people. Her whole body will go rigid if you try to hug her.

But less severe cases arent that bad.

 

[Molly's Run Minis]

Hi Mindy

As Jody shows this comes in so many varying degrees and for sure my niece is severe. She also has "tics" that the more severe cases get, and has an odd affect to her voice.

I have met a lot of adults over the years who I think probably have it and dont know it. Once you have been around someone with it--it gets easy to spot.

Social skills is a big part of it. Most really lack social skills, cant read body language etc. This is why they have a hard time making friends. Less severe cases are just kinda known as "quirky" people LOL. A big one is personal space. My niece was always invading peoples personal space. Most of us are just born knowing not to stand too close to people when we talk, but she would get right in peoples faces. We had to teach her that people have a 2 foot circle around them that you dont invade.

Inappropriate emotions--My niece will laugh if someone gets hurt, but will rarely ever cry unless she cries from anger.

Schedules oh the schedules. My niece would get so upset if we didnt eat right at 5:30 every day. Lunch at 12 without exception. If we tell her we will pick her up at 230 and we arrive at 235 she is furious.

And the big thing is not wanting to be touched or touch other people. Her whole body will go rigid if you try to hug her.

But less severe cases arent that bad.

your neice and i have some things in common!

i have a few 'tics', and i am big on personal space. with women i have a 2 foot circle of personal space, with men its more like a 5 foot circle(bad experiances with men) and i get really tense and on edge around men even if i am attracted to them. i can read body language pretty easily, but i also laugh when someone gets hurt. it annoys me so much but i cant help it. when i was younger i used to get laughing fits, i'd laugh over nothing for a good 30 minutes before i could stop. as for touch, it varys. sometimes i can do it and dont mind and other times its like eating dirt, you know you can but you really dont want to. i dont have a big thing about scheduals.

when i go to places where i know there will be alot of people i HAVE to bring my ipod. that ipod is the only reason i dont go insane when i go to places like wal-mart. when i went to school i always had to listen to it, if i stopped listening to it i would either have an anxiety attack or feel like killing someone. i got into some huge fights with teachers over that, and once i just gave up and walked out of school to a pizza joint down the street because i couldnt take it. also, that school knew that i cant stand men, and they put with an ex-marine male teacher whom we had to address as Senior Cheif. yeah. that was a great fit! he would get right in your face and wouldnt back off, and his breath always smelled like poop. it was terrible.

 

[Performancemini]

Hi Molly:

I am so glad KayKay explained more about the condition; as I know a l2 year old girl who has it. I did not know that much about it. I met her at a friend's home. My friend gives riding lessons and driving lessons to children and this little girl rides there. I, too, work with a disabililty. I have a low seratonin level and take a prescription for it. It is not severe; but I still have to deal with things from it at time. I sometimes "short circuit"

as I call it when I get too stressed or tired. Then I bite someone's head off. (Usually my husband's LOL!

). All I know is you have to take one day at a time and one step at a time. The animals are a blessing. They never judge and always listen. I am glad you have your minis and hope you continue to enjoy them.

 

[kaykay]

Molly you crack me up as you sound so much like my niece! If your ever in Ohio you have to come visit me and the horses!

Another thing I forgot is my niece gets hurt A LOT especially when she was younger. Very typical. But what wasnt typical is she had a huge threshold for pain so would often be misdiagnosed. I remember when she tore her ACL playing soccer and I rushed her to the hospital. They kept insisting it was just a strained knee because she wasnt in enough pain. I knew she had torn it because I heard that awful "pop". I insisted they do an MRI of her knee and they were just shocked that it was a horrible injury (which took 2 surgeries and 1 year of rehab to fix) The Dr felt so bad because he had refused her pain meds. I had to explain to him that she had aspergers and they will not express emotion well, not even pain. So when she said to me "aunt kay it hurts pretty bad" I knew in real terms that meant excruiating pain. The rest of us would have passed out from the pain but she would just say it hurts pretty bad.

I have been told that it is because of people like her that hospitals started the pain scale system (rate your pain from 1-10)