Asperger's Syndrome Community
tough question
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This forum is an un-mediated, patient-to-patient forum for questions and support regarding Asperger Syndrome issues such as: Balance, Behavioral Issues, Causes, Characteristics, Classification, Clumsiness, Communication, Diagnosis, Gait – Walking, Genetics, Medications. Parenting, Prognosis, Restricted and repetitive interests and behavior, School Issues, Screening Sleep Disorders, Social interaction, Speech and language, Treatment

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tough question

For those of you who have aspergers, what are some of the issues that you have not out grown?
I get obsessed over projects, yard , home make overs designs, sometimes i end up spending $ that should be spent towards other things
i also have a need to be understood, i have trouble sleeping because i spin my wheels at night, and sometimes i feel like more people could talk about their issues if ego's were put on the back burner
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Avatar_f_tn
i was hoping there were more adults with aspergers here, i know there are alot of parents of newly diagnosed children, and then ofcoarse mj, but are mj and i the only ones? i would like to talk with other adults who are recovering from this disease/disorder.
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Avatar_f_tn
I am here...   i have aspergers.. and wow... let me see here..lol..... here are some issues that i still have.....

control.. more control.. and more control... extremem competiveness.. i have a 4.0 at school.. and i am still not happy.. if i get a 96 on a final.. i am mad.. surely i could have gotten a 98... or better.. a 100. and if there was extra credit.. 105..

we were drawing blood today.. butterfiles.. and although i have done it many times.. and am very adept at venipuncture.. i missed twice.  man.. im still freaking about it.  so bad when i got home i think i rocked for about an hour.

no one understands me.. at all.  i need validation.. and most of the time.. t he things that i find SO important.. others simply shrug off.. w hich in turn makes me even angrier.

i have this issue with justice.  fairness... when i see someone getting away with something. i hurt .. alot.. i rock.. alot..  when i see a documentary on tv and there are those that are suffering.. i totally go into my world... my brain goes way too fast .. all the time.. i have to take sleeping pill every night.. my grandmother just passed away last thursday.... and now i cant nap in the afternoon after school due to waking with panic... i want to know EVERYTHING.. i get obsessed over the same things that you do as well....

when i try to explain something to someone.. they always tell me that i go way to far into an explanation.. or .. when asked a question at school... i am told that i go too far in my answer... this upsets me greatly.... its like.. well.. yes.. the heart beats due to electrical activity.. but.. the sa node and the av node.. bundle of HIS and perjinke fibers..... and on and on and on.. people cant stand it when i elaborate.. they think i am trying to show how smart i am.. i already know i am smart.. they know i am smart..  i am not trying to show off.. i am just telling them the reasons behind what makes the electrical activity... and so on and so on.

no one cares to hear it.  makes me feel like everyone else is really stupid.  or that they dont care.. or that my feelings are  nothing.  this only gives me an impression of those around me..

when i know someone is bullshitting... i call them out.. i cant stand pretenders... i hate fakes.. i cant ignore them.. i have to call them out.. even in publiuc places.. i am very forward to a fault.. and i end up saying things i shouldnt.. but.. i cant help it.. i ts the truth.

anyway..LOL.. hope yopu are doing well..
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365714_tn?1292202708
I'm back from my break.
I can relate to a lot of the things said from both of you.

For one thing, next to no control over my emotions...  If I get stuck in a crying spell I have to wait it out. I can't just think of other things and expect the crying to go away. When I was on Celexia, it made this much worse.

I need to understand things. I don't like to be left with an unresolved conflict. If things are left ambiguous, then I’m stuck spinning my wheels trying to figure it out.

I can't comprehend people who start out friendships with the desire to abandon the person whenever they feel like it. Even more so I can't comprehend why anyone would get any joy seeing another human suffer the pain of rejection or hurt. Those people sicken me and still do.  It's like being in 3rd grade all over again. I get confused with ulterior motives and related... I don’t tend to spot it when someone is trying to use me until it’s too late.

I think straightforward and from the heart. For people to think I am pretending, baffles me. But I've had that happen and it burns.

Letting go of my feelings on the above... It takes me a very long time to forget. I forgive the people and hold no hard feelings against them. But I'm still stuck with the question, "Why?" "Why are these people like that?" I just don't get it one bit.  I'd think in my mind that if someone has experienced the pain of rejection, they won't do it to other people. I would think that all humans would think like I do... There's that theory of mind deficit working against me. I just can’t understand the mindset of someone who could just dump friends like they are disposable. I’m not like that. I guess that’s another fault. I give out trust too freely.  I trust too many people and then get my heart broken.
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Avatar_f_tn
yeha wow.. i can relate to the whole too trusting.. its like this chip i wasnt born with or something.... and its funny.. because i get really paranoid as well.. its like..hmmm.. she seems like  a really nice person.. but i bet she isnt.. ( insert chip here) oh..its ok .. trust her.. i bet shes great... then WHAM!

MJ i have NEVER thought about it that way.. you have shown me much insight!! I FORGIVE the people.. and hold no hard feelings.. but i am still stuck with WHY!!

i dotn forgive the people.. at least.. i thought that i didnt.. i always say.., how stupid can you be?? what they heck? are they that inept at intellectual thinking?

i feel sorry for people. in a way thats bad.. i look down on them.. because i feel alot of times that they are lower than i am .. not in a bad way.. but in a celestial you are not at my intellectual level only because you cannot reach inside your self and understand who are you are" kind of way.

alot of me i still dont understand.. and i find myself standing along with all the other humans. not because i want too.. but because i am .

i dotn know that anyone will ever truly "get" me.. not alot of people have.. and those that have sorta done so.. well.. they see me as something else..

i tend to intimidate alot of people. in school i have a huge problem with that... its not like i mean too.. its just that they need to wake up and pay attention.  

do you guys feel like you are more perceptive? i know i am .. I am also VERY alert..of EVERYTHING.. and it feels like most around me are not at all..
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Avatar_f_tn
With relationships, comes the pain.  Wisdom is needed in making choices.  This is something as your mother I could not just "give" you.  I tried to encourage you to be open to helping others, praying for them, listening and learning.
You chose your path of communicating such as the neopets and now the medhelp forums.  The fact you are doing this makes me feel proud.  
The one thing as your mother I could never do is to make people accept your differences, nor can any parent in this forum or others.
However, we can reach out to educate others and help them to realize there are differences and that they don't have to be threatening.
I wrote to you about stop & starting things.  I can remember when you were about 8 or so and I had my wisdom teeth taken out (all 4).  I was in pain, you were in the car and demanded to know why I wasn't talking.  You kept saying something like...whats the matter...don't you have a mouth!.  I could hear you were getting upset and I was in pain.  I realized you didn't understand.
If I could take that experience and help you to understand that what people write into these forums is coming from a deep place inside them for reasons of their own.  We don't have their expressions or being able to sense more than words can say by being in their presence to go by ...communication wise.  We are left with words and actions.
When action is blocking someone from communicating without an explanation...it is like closing the door.  Closing the door leaves one guessing why the door is closed when it was open a short time before.  Bless your heart, MJ, with your tendencies that have been there since you were little, you have a hard time letting go.  What drives you, irritates others.  You can now learn from this most recent experience to back off when people block you.  If it is a mistake, they will let you know.

My concern has always been that someone will try take advantage of you.  They don't know you like I do being your mother.  This is a mother's fear.  If I could have handed you a manual that you could memorize and know what to do in every situation, I would have done it....but it is impossible.

My hope is that you will learn to distinguish the difference between real and unreal, true and untrue.  Many friendships are forged in time.  Fast things blowing in, blow out fast too without any substance to maintain the relationship.  As I shared with you before, relationships are complicated.  Some people live off emotion.  You stated to me that you didn't understand why someone would want to stay in a miserable place.  I replied that repetition brings attention for them.  

My hope in sharing this post is that other parents, male and female can enter into this and share ways they are teaching their children about relationships, etc.  I have always looked to the parents of older children than me to pass on what worked or didn't work.  We carry a torch so to speak, you and I and your Dad to share with others your accomplishments.  

I wish I could write a book and take others on the journey we went with you as you blew away the predictions for you.  I am grateful for all the input from others, teachers, parents, some good, some bad, articles, books, Temple Grandin!!!, Susan Moreno......the list goes on.  You finished High School with a near 4.0 average, a National Honor Society Student, and in the top 10 percent.  This was accomplished with much cooperation in the Public School System.  

If I could take everyone back to your struggling in 5th & 6th grade especially with your teacher practically breaking down over not knowing how to deal with you.  You were stuffing kleenexes into your nostrils and hitting your breasts because you didn't want to grow up.  Your Dad got the educators involved with the need for education and we looked for the reasons why you were agitated and what could be done.

I wanted to share this glimpse into your life to make you more real to the others reading this.  Especially those who would judge you without knowing what you personally have had to go through to be where you are now.

You, ARE an inspiration to me.

Love,
Mom
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Avatar_f_tn
To add to what I just wrote:

I could not make you understand that you have to wait for replies.  As your verbal skills grew and you wanted to talk, you wanted replies there on the spot.  I couldn't always give answers as some things needed time to reflect on.

Maybe someone in this forum or coming into it can say it in a way that helps you connect the dots better.

I wanted to add a couple of funny things (although at the time, they were not) you along the way.  One time when I didn't answer you on something, you said, "I'm not gonna put flowers on your grave".  Where that came from, you got me.

I can remember the interesting way you used language as you began to work with words...like fingernail moon.  You thought I was wearing red jeans when you were made because you have red hair.  We were talking about genes....lol!  You would refer to the roof as a "lid".  You said you couldn't watch your head when we warned you about the trunk coming up, because you didn't have eyes on your head.  

If I could tell other parents to enjoy and write these kinds of things down.  That the frantic earlier years will lighten up as people work with your child(ren) and others learn to relax around them.  It takes focus and energy....creativity.  We can share our stories of survival and offer hope to others.

Bottom line of all of this is that I as a parent learned that it does take a village to raise a child.  

:-)
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Avatar_f_tn
It is good you are seeking to understand more about Aspergers.  At one point when I became aware of it, I thought MJ was more like Aspergers, but she was not diagnosed with it as she did not have language before 3.  She had and has the perseverance about insects which later in her teen years blossomed into plants.  She lives in a jungle.  At home, my basement still has 20 plus plants I have kept alive while she has been living away from home.  In fact, if you saw the basement with all the stuff she left all over......

My understanding of Aspergers like with Autism is that relationships will ALWAYS  be difficult since there isn't an intuitive understanding of how to do things...when to speak (pause) and share thoughts, etc.  I noticed MJ's impatience with talking.  She felt she would lose the thought if she didn't get it out.  I admit I wasn't always patient with her.  I could beat myself up with all the "failures" or " I should have done this/that"....but I would rather encourage others to learn from my ignorance or hard won knowledge.

I struggled with others views that MJ looked normal therefore should act normal.  She would run up to strangers and want to take them home.  This happened when I took her to garage sales or to the mall.  If visitors came to my home, she would have them looking at her drawings and later, plants, etc.  It became somewhat embarassing to me especially when I saw people were uncomfortable with knowing what to do.

We would focus on "staying on task".  The first years were spent mostly in her own world.  I tried to bring girls over to play with her, but she would have them hold something and run off to the field across our home to play with the bugs (dig up ant nests, etc.).  I quit finally when I was left taking Barbie Doll things apart and playing with a nine year old Rebecca.... while MJ was hanging hot wheel cars on strings on the curtain rod.  My dreams die hard!!!

Autism, Aspergers.......it is a journey like none other.  What could prepare us????

Acceptance, tolerance ...a willingness to understand that it is difference.  What is he or she thinking when unable to communicate???  Why is he/she biting him/herself?  Let's keep asking the questions and seeking the answers.  Then we can try this or that, record the successes and pat each other on the back!!!

I am glad this forum and the others are there to be bridges to somewhere.
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Avatar_f_tn
Now I am on a roll.  Here it is, my day off and I should be taking a shower so I can go out and take care of personal business.....lots of errands, etc. (list to do's).  However, I am here.  MJ drew me here.  I am so proud of her having a heart to want to care.  I can remember once at church, when she was about 16 or so, I saw she had been crying (red eyes) and was fighting against continuing to do so.  I asked her what was wrong.   She said she had wanted to sit down but a girl told her not to sit in the chair by her because it was for someone else she was waiting for.

Who was this girl kidding?  MJ and I both knew that MJ was being rejected.  I couldn't pretend and say all sorts of ____ to smooth it over, so I just said what came to mind.  I hugged her and said, you have a heart!  It is a good thing to have a heart.

I am left now thinking of this as MJ has just gone through being accused of being a stalker, etc.

Part of me was angry with the "How dare they!!!!"  Part of me grieved for what she has and will go through in life being on autism spectrum.  Part of me wants to laugh.  Could they see her like me, child-like...she doesn't smoke, swear or even have a boyfriend....hah!  I can hear her in my mind's ears saying...What about my one thing when we would go to stores.  MJ a stalker, a looney??????  NO WAY!!!!!

I have been a philosophical soul since I was a child, asking questions no one could answer.  I believed as child that when I died and everyone who knew me died, it would be as if I didn't exist.  Now, many years later, I realize that we leave "legacies".  We build things that are tributes to who we were and what we did.  We influence those around us.  A child's perspective is limited.  I still say, though, that we are like children playing at being adults as we live for such a short time.

Therefore, it is all the more important what we do with our time.  I wanted MJ to know that to care is worthwhile.  Even if it doesn't seem to accomplish anything.  

Her brand of caring is important.  She is more than someone caring what happened to the bee that bothered the person in the car.  Sometimes with autism, the order is different.  Maybe the attention being drawn to the bee first before the person serves its purpose?  What about someone caring that the animals are saved in the hurricanes?  Who would help their survival if ALL the focus was on the humans?

We need to step outside the box.

Thanks again.
:-)
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Avatar_f_tn
thanks for answering, i am going to print it out and read it tonight
my youngest son is home sick, i need to get him to the doctors,
i do appreciate you all taking time out to post, i have lived with this for so many years, but i never talked about it with anyone
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365714_tn?1292202708
Omg...wow you sure posted a few of my embarrassing moments. *blush*  I'm laughing right now out of awkwardness for the note about the stuff I did when I was 11-12 years old and younger. Some of those things I don't remember. Others I forgot and now you resparked those memories.

I thank you for your support though. I vaguely remember telling you about not putting flowers on your grave, but I don't remember where I got that line from either...  I'm thinking I echoed something I heard on tv once and that line felt approrpriate to use at the time?  I wish I could go back in time and give you the real reason on that one. Mystery to me as well, lol.

I guess that's part of the ups and downs of autism... I really hope that people do take time to read through this thread.

This sunday I was at an adult forum at our church. The speaker was discussing autism and her two children.  Some things that I remember: She said if you want your child to do something, make that the last line in your list.  That's all they tend to remember with verbal directions. I guess with me sometimes it's the first, sometimes the last, sometimes don't remember anything. That's why it is important to break things down into steps.  I tell people, let me finish the first task, then you can tell me the next one.

She also talked about it being a social disorder.  Other things she mentioned was the strengths she notices with her children. One is an excellent at memorizing books and can spell words perrfectly. Another is great at music. The child can hear a tune and just play it for the first time without any refrence.  It was a pretty good discussion. I was glad to be there and help add to her points. I gave the speaker my email and hoe that she will contact me. If anything one of my desires is to do more real life autism advocacy.
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365714_tn?1292202708
I mean *hope*...  I didn't bother to spell check my post for typos... I should have.
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Avatar_f_tn
I wanted to be real and give a glimpse of what you have had to go through.  It wasn't easy for you and neither was it for your dad and I, but involvement of others along the way is what got us through it.  You had the spark to move forward and reach for things many others would have not expected you to achieve.  It is by opening ourselves to truth that we grow.  

Some of the toughest times parenting you were when you wanted to give up on yourself and when others rejected you.  I knew from my own personal experience that I had lacked the support when I was growing up and so wanted to give what I could and what I lacked.  Wisdom told me that it was important to open up to others being involved in your life...hence the "global village".  Those were valuable lessons and certainly a great debt of gratitude goes to your grandma. There was the kindness of your art teacher who went the extra mile who we nominated for the teacher award with the autism society.  The school psychologist...that is why I say the list is long!!!

Your grandma has a heart bigger than a mountain and deeper than the sea.  She has been the epitomy of what God meant to love others.

My hope is that the focus will be on what each of us can do by the choices made, forgive ourselves when we fall short and get back in there and try again.

:-),
Mjthewritermom
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Avatar_f_tn
thank you to the people who have contacted me through email, i feel like i should be posting what we are talking about here because it may help someone
but when it comes down to talking freely about character defects and ways to change them, i feel safer one on one
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Avatar_f_tn
I normally don't write in forums, but due to the situation that developed and the anguish my daughter felt with being blocked, I felt that this was a good way to deal with it.  She found this site (forum with autism & aspergers) and had good reasons for posting.  I was happy when I was told she was doing this because in my heart I felt she was showing some growth towards reaching out to connect with others.

I wanted to convey to those who felt hurt by her manner of communicating  that she does have PDD-NOS.  She was into insects for the better part of her childhood, not people.  I have enough courage to be honest about my feelings of failure as a parent in that I tried to make her what she wasn't to make her more acceptable to others.

I refuse to do that now as I saw it didn't work.  I shared with MTgoat, I think, that when MJ was in grade school, the teachers got after me for getting "glow in the dark insect stickers".  They wanted her to pay attention to what was going on in class instead of being so consumed by her attraction to bugs.  What I saw as a result of my trying to be obedient to what they suggested was MJ getting worse and acting bizzarely.  She would try to sneak catipillars into her socks (they got squished...yuck!) and would take bugs and mix with grass in a bowl, saying--"Kill bug, Kill bugs!".    That was a franctic time in my life.  I reached out to others, including calling Temple Grandin for help.  She suggested they use the insects as a learning tool...........WOW!!!  Why didn't the teachers think of that?????

Anyway, it was after the MAAP conference around 1995 in Indiana where I saw older individuals on the autism spectrum and how they interacted, shared their stories, etc. that I finally began to accept MJ for who she was and who she would become.

Yes, I was the mom that showed up on the neighbors step when MJ came home from riding on the school bus to tell me that their son stood up on the bus and said--"If anyone hates MJ, clap your hands".  I saw "red".  I admit it.  I found out the boy was in a troubled home being raised by his grandmother.  She apologized and said she would talk with him.  Meanwhile I let MJ be taken to school by her Dad for a couple or so weeks and then we talked about not running from situations.  That is when I told her that these kids who did these kinds of things would one day be embarassed to admit.  Some would run for office and want to convey their loving, caring, compassionate nature....that memory would not fit.  She decided to get back on the bus....we moved forward.

I believe it is in being honest or admitting the inability or lack of know how to be honest as being a good place to start.  There is a wealth of knowledge out there by many who are coping and doing well in their current situations as well as others who have successfully made it.

I admit my feeling guilty that MJ had more going for her than my dear friend who has a severely autistic son who is 17.  Why did he end up being on one end of the spectrum and MJ towards the other?????  I finally accepted I cannot answer that.  I am not God.  What I can do is be there when needed.  I can learn to stay out of areas where it is not for me to be in.  Dwelling in negativity isn't a stable place.

Thanks everyone.  I look forward to your stories and questions and growth.
:-)
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325405_tn?1262293778
I also am now having problems as a parent since there are some ways in which my daughter is sensory-seeking (she loves to put people's hands over her face for some reason).  I hate anyone touching my fingers.  My daughter seems obsessed with having my fingers on her face and giving her facial massages, which I do, and I'm fine with that until she grabs my hands to move them to another part she wants a facial rub... I hate being grabbed without warning.  Oh, and then of course she sometimes screeches like all 3 year olds do, and then you have a playdate with 10 preschoolers all running and screaming, and by the time I get home I'm ready to curl up in the closet and rock for an hour to recooperate.  Now that the weather is colder, I will try wearing ear muffs.  Not sure if people will accept ear muffs in 50 degree weather, but I can not stand earplugs or anything else in my ears.  I also refuse to wear hats (ear muffs are okay usually) and I hate socks and tags in my clothes.  

Yesterday I had a parent-teacher conference with my daughter's teacher and she was telling me to do some things at home with her to break her of her rituals.  And she told me that she'd just have to throw a meltdown fit more often to overcome these things.  first off, I am not sure I agree with some of the things she wants to correct (you can see my other posting).  And second, I can tolerate her meltdown fits somewhat, but not too frequently.  So I admitted to her teacher that I had sensory issues.  I am not sure what she thinks of me as a parent.  And me just telling her point blank, you know that's great, but I just can't do it, I can't handle it.  I didn't tell her that I didn't understand why she had to break ALL the rituals... I have my own rituals on certain things, so why can't my daughter?  I mean it's not like she's ritualizing everything, just certain things here and there. After the look on her face after the sensory issue admittance, I was really afraid to tell her that I had some OCD issues as well.  Well, the teacher said that she'd have the occupational therapist come out for a home visit next month to go over some things that I can do with my daughter and she might suggest an adult therapist for myself.  I guess she's being nice?  I can't read people very well.  I mean, their faces say one thing (she looked freaked out, I am thinking she thinks I'm a bad parent) and her words said another (oh, it's okay, thanks for being honest, you are such a wonderful parent, most parents wouldn't tell me those things, but I need to know those things, blah blah blah).  So is she happy with me or just wierded out and blaming me for all my daughter's rituatlistic behavior that she hasn't yet overcome because I haven't forced her to?  

So, I don't know... maybe I would be diagnosed with aspergers if I was growing up in today's world.  I really don't know.  I am pretty social, though.  And very outgoing.  But, you know, so is my daughter.  Sure, she can't read social cueing, and there are differences in her social communication, but she does love interacting with others.  So if she has an autism diagnosis, does that mean I might have aspergers afterall?  Or maybe she doesn't and the diagnosis is not accurate and she's just got really delayed language, ADHD, OCD, social anxiety disorder, and sensory integration disorder.  Given she has a lot of echolalia and ritualistic behavior ... her diagnosis of PDD (either autism or PDD-NOS) probably is accurate.  
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(continuation of above response... again don't read it if you don't want to read a monologuing blurb of stuff coming out of my head late at night)....

At what point is the cut off between just having a combination of things and having aspergers?  With my daughter the whole delayed language thing I guess was a big tip off.  And I also don't get why parents are so freaked out about having a child with autism.  But then I guess I have a "very high-functioning" child as the therapists seem to call her.  

Oh, and then I have a husband who is pretty ritualistic in many ways.  He had a lot of social problems when he was a kid growing up.  He says he's a nerd.  He admits it quite proudly.  Well at least he's mega smart, so his behavioral differences can be explained that he has a PhD and he's a genius and so intellectual.  I'm probably above average intelligence, but not nerd smart, so I can't use the nerd definittion to explain myself... I feel like Milhouse on The Simpsons when he said after being called a nerd, "I'm not a nerd.  Nerds are smart."  Well, he definitely is the nerd, but he also has a lot of aspie qualities without being an aspie.  You should have seen him fighting with our 3 year old daughter the other week (actually at that point I think she was still 2 since she just had her birthday).  They both wanted to be the red piece.  He always has to be red.  Yup, a 35 year old was arguing with a preschooler about who got to be red.  Mine.  Mine. Mine.  That's all I kept hearing.  And I was trying hard not to laugh.  He gets upset if you change your mind about what restaurant you are going to while you are in the car, so if you make a decision, dear Lord, you must stick to it.  He's not great at communicating.  Neither am I.  We seem to communicate well enough with each other, reading each other's responses.  Yeah, we've been through some counseling, though the counseling was mostly on how to communicate with other relatives and not each other.  He knows how I am feeling by what I'm eating or suggest to eat.  He probably knows me a lot better by what mood I'm in.  So, yeah, lots of aspie qualities in him too.  

I imagine other parents on here must have some autistic traits, too.  I mean seriously, if you look at the checklist things that you get from therapists and doctors and then the school system, much of my side of the family and probably also my husband's side have the traits.  So, many of us not enough probably to have a diagnosis (I have a sister who I think has aspergers though and probably would get diagnosed easily and also a great-uncle still alive who probably does as well).  Well, I'm not a doctor.  I can't diagnose people.  

So, okay, you should have some NT people post on here and blab on about issues they have that autistic people also have.  Maybe then autistic people wouldn't feel so alone on the things they are dealing with on a daily basis.  I guess I also want to hear other autistic adults talk about some of the issues I have overlapping because I don't think there are any forums for sensory integration dysfunction.  There is an OCD forum, though.  I occasionally peek over there but haven't posted except once and that was quite awhile ago now.

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Oh... I must have erased part of the initial first portion...  Man, I am really disorganized tonight, in both my thoughts and in getting the silly computer to post what I want to.

Anyways, I do not have aspergers (or at least not a diagnosis), but I have been diagnosed with sensory integration disorder, ADD, and mild OCD.  I seem to have a lot of overlapping things with my daughter who has a PDD diagnosis and like to pop over to the aspergers forum occasionally to see if there's anything relevant to myself.  So, not sure if you wanted to hear from an NT (if you could call me one).  

There are a couple parents out there who have admitted to me one on one that they have sensory issues and are raising autistic children.  Yup, sounds like the genetic component to me!  I would be curious to see more dialogues about dealing with sensory issues as an adult, and also as adult trying to raise children who know what your issues are and try to use it to their advantage to get what they want.
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Avatar_f_tn
Thank you for sharing.  It takes courage to open yourself up, not knowing if others will criticize or make fun of you, etc.  I would agree about the genetic component.  MJ had an uncle who we think may have had Aspergers.  He was brilliant, but didn't fit in and took his own life at 17.  I can look at certain members of my family and see similarities and my older sister has a daughter who has 2 sons who have been diagnosed with a form of autism.

There are so many unknowns as to the "why's of causes".  My youngest daughter had seizures after the dpt shots.  We had to video tape it to prove to the doctor who then wrote out a prescription for phenobarbital.  We found out that taking it could cause her developmental delays so I took her off it after a couple of months.

I ran through all sort of things mentally when MJ was first diagnosed with a significant developmental delay at 2.  Was it that I smoked cigarettes?  Was it that she fell out of the cart at the grocery store????  I realized that it was a vicious circle and blaming myself wouldn't change anything.

:-)
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I thought my uncle was 18 when he took his own life. I guess I'll have to ask grandma for sure.  But yes grandma strongly believes he would be considered aspergers if he was alive today.  At one time he was trying to work on a time machine or at least dabbing on some science dealing with that possiblity.

It's sad that he also had "terminal depression" what grandma calls it.
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As far as the blame game, I've played around thinking what if, what if this or that....  What if I didn't have autism?  Then I realized it doesn't matter. There is no crystal ball to be held. It's pointless spending the time wondering about things when I could instead accept it for what it is I have autism. I'm autistic. Does that define me? No, but it is a part of me and can't be removed.Does that mean I can't strive to be a better person? No.

I can still be autistic but work on ways to improve myself and overcome some of my challenges and work around those that can't be overcome.  I'm hoping bit by bit people can help change the attitude of autism from something negative to something more optimistic.

I am concerned about the friend who has the more severely autistic child. That's why I'm not totally against the search for treatments to improve the lives of people with autism, but I don't believe in a cure.  I don't believe in anything that could remove all the gifts with autism.  I just want to see what can be improved while keeping the good.
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Avatar_f_tn
i never met my gradfather, but from what i do know about him, he did exibit spectrum behavior
i also know that he did what i did for so long, he self medicated with alcohol
i self-medicated with the actuall medicine given to me for the asper
now i am terribly afraid that my son my do the same!!
maybe maybe not, i have been sober since 2004, i hope he was too little to rememeber me taking pills
they say that if you smoke or drink then your child will most likly so the same, i pray that i quit those habits in time
now my ocd is more focused on my family and my koi pond, i also love to write like mj, maybe if i can introduce my child into healthy habits he will be safe
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I figured I'd open up about stuff.  I deal with criticism from people and inlaws about some of the quirks that make me who I am.  A couple of the inlaws say hurtful things like "you'd really look so much nicer if you got your hair styled."  Or be picking out clothing for me.  Clothing for me is a really sensitive thing.  To be stylish evidently you want things that are more form fitting.  I must have clothes that are loose and also that feel okay, so I usually go for 100% cotton and try for organic cotton if possible.  I refuse to wear pantyhose (I can't stand nylon).  And I do prefer long skirts over pants since they are much looser.  But evidently wearing socks or nothing at all with your shoes looks odd and isn't fashionable or something like that.  I've had my motherinlaw insinuate that I'd hurt my husband's career because of the clothes and hair issue.  Oh, yeah, I should have my nails done too.  So I figure if I have to hear it from relatives/inlaws, then it really doesn't matter if some stranger reads and passes judgment on me.  oh, and the things I get told if I try to explain why I don't (I stopped bothering explaining anymore) is that I'm an adult, I should just get over it.  Are they going to think that about my daughter when she gets older?  She's got a lot more issues than I do.  Hopefully she'll get some of them worked out.  But are people going to give her the same *bleep* that they give me but worse?  I had a hard time in school.  Is school going to be 10 times worse for her because of her language issues on top of the sensory and OCD-like issues?  I have horrid memories of getting crammed in lockers, shoved on the ground, insulted, in middle school had my purse repeatedly put in the science classroom sink and totally saturated with water.  I had one friend in elementary school (she was in a different grade so I had no friends in my classrooms) and a different one friend in middle school.  She wasn't in most of my classes, but it did help to have one friend.  Plus my brother was also a close friend who was 1 year apart.  By the time high school came around, I was lucky to make it into a science and tech magnet school.  I went from having one friend to having dozens of friends.  My husband went through the same scenario when he was growing up (we went to the same high school).  Will there be something similar for our daughter?  Or will her delayed speech and language keep her from making friends at all?  

I get upset because people do not understand why these things would be almost impossible for me to do.  Every time I've had my hair styled, which would be twice in my life (once for my wedding and the second time to look knock out for a job interview I really wanted)... First off, I hate people touching my hair.  It is probably the second worst experience for me after people touching my fingers/hands.  Listening to scissors cut is annoying, I can't sit still sometimes.  Don't ask me why such a small sound that is barely audible makes me so annoyed.  oh, man, salons stink.  The stink is probably the worst thing after someone touching my hair if not moreso intolerable because I'm already gagging before I enter the door.  They smell like perfumized shampoo.  And perm and other chemicals like hair dye. Hairspray.   You can smell the hair on the floor.  And then you have to have some sort of torturous conversation with someone you don't even know.  Plus you have to stare ahead and sit still.  I have a friend cut my hair usually.  It looks good, but it's a straight cut, not a curl, style, whatever.  Sometimes I do it myself.  I've actually had the inlaw who annoys me about my hair ask me if I had my hair styled finally, and twice now it was the two times I did the haircut myself.  I didn't know what to say so I just said "sure" and didn't want to talk about it and changed the subject.  Yup, it was my own personal salon, the salon in my bathroom.

And as I'm in my 30s, I've had a few gray hairs come in.  The only person who seems to notice is this same inlaw who's complained about the hair styling.  So then there was the whole argument that I must dye my hair because that's what women do in today's world.  Oh, and then she's the same person who might notice if visiting if I don't wash my hair everyday.  You can see why I don't like visits that often.  Usually she doesn't knock me down for all the items during a visit (though in the past, there was one visit for 2 weeks where she did and more), but by the end of it she usually picks something about me or the house or anything to comment on.  It just really hurts sometimes when family is telling you stuff like you can hurt your spouse's career and that people make impressions of you by how you dress, how you act, how you talk.  Evidently I guess I shouldn't have married my husband or something.  You know strangely, he has never complained and doesn't care even though I've asked him point blank on many occasions.  We've known each other since we were 14.  His response usually is that I'm the person he married, and he wanted to marry me for who I was not for someone else.  I never wore makeup through high school or college and he actually is bothered if I do put it on my face (when I was working I tortured myself occasionally with the stuff and those form-fitting clothes if I had a big meeting or something to attend).

There are other things that people will not understand about me.  I usually like to shop in the same places.  It helps to have a routine and know what to expect.  Visually there's a lot to take in when you go shopping.  I have a bad habit of walking into carts in new places.  I actually love shopping in new exciting big places if they're open spaces (Costco is one example), but dear Lord, I can not take my daughter with me because she also loves those big stores... it's sensory overload... and neither of us are playing attention!  That's where husband comes in and we all go together... he can seem to watch the both of us.  If I go somwhere I know, and somewhere that's smaller... shopping is easier!  Nowadays, I just say my daughter handles the same routine fine and I can take her shopping with me.  That is true.  She does go shopping with me.  

But, after a recent move, I've remembered how hard it is to go into new places.  Thank you MJIthewriter and her dad for writing me to tell me what all the stores up here were and what to expect store wise, weather wise, people wise.  It helped.   I still had problems, but it was easier.  It's not the store I'm used to.  It's been getting a lot easier the longer I'm living here.  And I definitely figured out which were the stores that were okay for myself and for my daughter to be in.  

There are a ton more issues I have... I just thought I'd blab some more examples about areas I'm currently struggling with.  I could also go on about my hearing which my husband is either constantly impressed and/or annoyed with.  And a bunch of other things.  The ADD stuff I guess I haven't really gone into.  I am not on meds for it right now, at least not directly.  I'm on too much other stuff right now, my body doesn't need too much stuff altering it around.  Have to prioritize the meds... stuff that is essential versus stuff that helps but isn't required.
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Avatar_f_tn
i can relate, my sister-n-law is a retired olympic gymnist, she has had 3 kids and weighs 110 pds, every time i see her she mentions my weight
i do not feel the need to explaine to her that my medication affects my weight, and right now i am doing what is with in my power to change or maintain a healthy weight
i do not care what others think of my behavior or apperience
the stuff i want to work on is the issues and behavior i do not like about myself
i am a bit too loud, i would like to become a more humble, peaceful person
so i am working on that
i know that i feel better about myself when i am consistantly improving my character defects
as far as the hair-styling goes....my hair right now is long and straight because that is the way i like to wear it
i also believe that i feel better about myself when i put a little effort into the way i look
i do not dress up for others, i do it for myself
even though my husband likes my hair long, i do cut it in the summer
i do not see how someones apperance can affext their husbands job, unless they are working closly together
or having dinner with clients
i do not like to wear pant suits, but if my husband and i are eating with clients then ofcoarse i will be uncomfortable and dress up,
not to do so would be selfish, and part of my recovery from aspers is to rid my self of selfish behavior
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