Newbie seeking support . Teen daughter has AS & hubby 2
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
Some of the people who work in special needs, are some of the most threatening I've ran across. They visit a site like Wikipedia and "brush up" on Autism, and between misinformation and myths... and a degree to convince them they can make no presumptious errors...
well, they do.
Fortunately, not all are so misinformed. We have a "Community Based Service" worker involved with our family right now, and he went to a recent meeting (staffed by professionals) and had to explain to those professionals my Aspergers daughter was latching on to what they said LITERALLY. For instance, "We'll try to do this or that, this coming week, maybe around Wednesday." She doesn't hear the "sometime" or "maybe" -- she only grabbed on the literal, Wednesday. She thinks in concrete, literal terms. They weren't aware of how to speak to an Autistic Child, and holding a PhD and other qualifying degrees in the field of Psychiatry??!
Should I add, that what they were doing / their "treatment to help her" was stressing her out? Because, they didn't know how to properly communicate to people with Autism. When Wednesday didn't happen, she felt they'd lied to her. She was very stressed out by their "help".
There were two other women, who were suppose to be "helping" our family, and went so far as to give their word on various things, "I will speak to teachers and get information flowing between school and pediatrician." (Promised to the pediatrician's face) -- but did not do her job. THAT STRESSED ME OUT. The Pediatrician was not happy about the failures, either.
The other was compulsively blab blab blab blab to my daughter with "counseling, counseling," enough words it was stressing her out. Autistic people need limited counseling -- that is, "Get to the point already." and "Don't fix what isn't broken." My daughters were getting very stressed out with all the blab. The one kept blabbing at my daughter, for "What's bothering you?" and insisting my daughter give her"answers". My daughter emphatically told her, "I don't know." and "I don't want to talk about it". numerous times, but the "care worker" didn't listen. Its not what that worker wanted to hear... the problem??? My daughter is Autistic and doesn't like getting talked at by numerous people, coming from different directions and can't see she's acting that dang different, and the only problem was getting blabbed to anxiety. My daughter wanted to escape the stress. She didn't need to be "fixed" -- they needed to back off. Sometimes, these "Special Needs" workers inflict harm on people with autism, without realizing it, instead of actually helping them. Sometimes the symptoms of "stress, anxiety = meltdown" is a result of all their attempts to "help" somebody who doesn't need or want their "help". An autistic person needs to be accepted like they are, and for people to back off and give them space. Acceptance, understanding, friendship and love are the only "medicine" to cure the symptoms of Autism.
I guess I have one advantage here you don't, and that's being Autistic... so naturally I see things from the perspective of my kids + 40 years of life with it. They say when a person gets older, they have some experience which lessens the symptoms, but I'm still struggling with adapting coping skills. It's not that easy, and I couldn't do anything about it, until I knew affirmatively from my kids' diagnosis. My kids only received valid diagnoses in 2009/2010.
In a way, its like starting over.
Your husband won't "change" -- unless he sees a need for it. (Like literal diagnosis.)
I suggest a lot of reading, http://www.wrongplanet.net/books.html Alex has probably picked the books that he's reviewed through A.S. perception, and feels are most beneficial to both A.S. and NT.
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
I was on a blog recently where someone posted something advocating a certain type of therapy as "the only thing that works." Her post read like it was being spit out by a computer and made all sorts of genralizations, like people with Autism all have these deficits. I had responded to be careful about making generalizations because I know from experience each case is different.
AspieForty - at what age were you diagnosed?
I just don't like it when people rattle off about Autism and say that people who have it "CAN'T" do this or that. I don't think it is fair to place that limit on a group when the disorder is pervasive. I'd like to take the word "can't" out of the English language. We have a long way to go in bridging the communication gap between people who are NT and people who are ASD.
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
I just don't like it when people rattle off about Autism and say that people who have it "CAN'T" do this or that. I don't think it is fair to place that limit on a group when the disorder is pervasive. I'd like to take the word "can't" out of the English language. We have a long way to go in bridging the communication gap between people who are NT and people who are ASD.
I haven't been diagnosed thanks to the very incompetance you speak of, right now.
I began "counseling" in 1995, after an excessively traumatizing marriage.
Before that time, I was afloat, hanging on. I had a job as an Administrative Assistant at a factory, and did all the sales / bookkeeping / computer invoices / etc etc -- I drowned in my work. Then, things went haywire. My husband was outside the continent and began terrorizing me to come back and I refused.
An investigation began, and because it was overseas, it became federal/international. When his package ended up in the newspaper, the nightmares began and I sought counseling for sole purpose of getting sleeping pills. I wanted the nightmares to stop.
I counseled (sporadically) from 1995-2006. The counseling was ineffective because, of several things.
1. Rehashing the same old thing (present) that wasn't resolving underlying issues.
a. Aspergers Syndrome went completely without notice
b. Childhood rape trauma that was never addressed, and went without counseling during my childhood
2. Trying to keep me in the "Victim chair" and not moving forward with my life, toward recovery.
3. The myth that just because you go to a counseling session you're damned to a lifetime of "mental illness" and there's never recovery, you can't overcome a bad patch in your life, you only "get worse and worse and worse" and they want to add on more diagnoses as they lead you into a life condemned to mental deterioration and rot. any other medical field, hmmmmm, you're suppose to "get better" and "recover".
I was diagnosed with PTSD... due to that terrorism, but making matters worse, they were mistaking some of my symptoms (like isolation) from Aspergers Syndrome, for symptoms of PTSD. The PTSD only intensified what was already there. A lifetime of being bullied and preyed on, friendless and alone. The symptoms read the same on paper. There were some counselors who seemed to know there was "something more" but it wasn't manic depression, it wasn't schizophrenia, it wasn't OCD, it wasn't paranoid-delusions... it was _a big blank_ and so they were inconclusive and kept addressing PTSD only.
Never once did anyone think of Autism.
Only after my children were diagnosed (three out of three kids for crying out loud.) My two daughters went through their lives with ZERO -- NADA -- ZILCH recognition of Autism, until my son began being observed for Aspergers. It took until the 4th grade to get an official diagnosis even on him. When he was, my daughters were looked at for the first time in their life... I had always slipped through the cracks.
The "community based workers" set me up with their therapist who had the credentials to access for Aspergers. They asked her to brush up on Autism, and then sent me to her. WHERE DID SHE GET HER INFORMATION, because when I was describing how Aspergers affects my life, i.e., doing some social Faux pas and people are turned off, I can't see it, but when somebody tells me after the fact, what I did, and I _understand_ what I did wrong... then I end up feeling awful about it. That therapist stopped me in the middle of conversation and told me, "What you're describing isn't Aspergers. If you were Aspergers, you wouldn't care if you hurt anyone's feelings."
Ummm, Aspergers people certainly do care if they hurt people's feelings... they simply lack the skills to recognize when they have, or how to prevent doing it:
12 Common Myths About Asperger's Syndrome | HealthMad
Oct 8, 2009 ... MYTH: Everyone with Asperger's Syndrome is a genius. ... MYTH: People with Asperger's have no empathy for others. ...
http://healthmad.com/mental-health/12-c ... -syndrome/
Myths about Aspergers
This page is dedicated to myths about. Aspergers Syndrome, Which aren't often true.
Myth: Asp's have no empathy. Myth- Asp's can never make eye contact. ...
www.aspergersgirl.com/myths.html
*OBVIOUSLY* -- NOT QUALIFIED TO DIAGNOSE ASPERGERS! She was spouting off a leading myth about Aspergers Syndrome. "People with Aspergers Syndrome have no human empathy." is pure bologna. (In other words we're all ret*d and serial killers, freaks, rapists, murderers, and other stereotypes).
I GOT OUT OF THERE AND ASPERGERED ALL THE WAY HOME ABOUT HER INCOMPETANCE, when I came through the door and my daughter (who is Aspergers syndrome -- diagnosed by a Child Autism Specialist), I asked her, "If you hurt somebody's feelings, does it bother you?" "Yes of course." "That iiiiiiigggggnoraaannntttt woman tried to tell me if you're Aspergers, you don't care when you hurt people's feelings!" I was Aspergering for hours over her incompetance... when the community service worker, who set me up with the Quack arrived, and I Aspergered all over her, and she apologized to me... but I kept Aspergering because I didn't have the piece of paper / an official report stating "Aspergers Syndrome" and I knew it was, their emails went as thus,
I have already spoken to ****name removed**** about all of this last week and I was sure that I had explained to you about the agreement we (****name removed**** and I) came to that yes, you do have Aspergers. In addition to that, you also have severe PTSD, which only adds to your disconnectedness from the Aspergers. Please try to relax about this and understand that ****name removed**** knew nothing about you before you came in that day. She is not used to working with people with Aspergers. She is well aware that the Aspergers is there now that ****name removed**** and I have both spoken with her. I can assure you that everything will be fine.
Thank you for expressing your concerns. I will gladly talk more about this with you when we have our sessions. Take care!
Community Service Coordinator
---
From: Community Service Coordinator
Sent: Wednesday, January 27, 2010 1:10 PM
Subject: Re: Aspergers Traits
Please understand that ****name removed**** and I both believe without a doubt that you do have Aspergers and that we are here to help you move forward and make your life and your childrens' lives better. The reason your paperwork was submitted under PTSD is because of the severity at which your PTSD symptoms presented when you met with ****name removed****. You suffered so much trauma as a child for more reasons than one... and some of the trauma happened to you as an adult.
The Aspergers symptoms you have had throughout your life intensify the PTSD at times because you become fixated on the discussion. I am so glad you are reading about Asperger's and that you are well aware of what is going on with you. It is such a good thing for you to read about. Now that you do know about the Asperger's, we have to find ways for you to move forward with your life, to grow as a person and to not have to relive the trauma experiences you had so much over your life time. It is a new day! God is with you and He is for you!
Community Service Coordinator
Anyway, tell anyone "I was in counseling" and they presume (myths, fears of what they don't understand) "Oh okay... Don't 'you people' freak out and start axe-murdering people, right??"
I had a car accident blamed on me that wasn't my fault. Screwy... the insurance company (Nationwide) did not even bother to get my side of the story. But the witness at the accident ( a preacher in his own front yard ) said that guy (who was driving from behind, without seat belts and trying to pass a car that was making a left-hand turn) -- driving like a maniac speeding... he could have slammed into my car, and killed me and my daughter (who was strapped in a baby seat)... the moron drove into the ditch instead of hitting me.
Well, the preacher saw what happened, and insisted to me the entire time the State Trooper was doing a report, "That guy was speeding" because of the skid marks, and kept telling me, "Its not your fault. It will be okay... he was coming from behind... don't worry. Your car never touched his.". But the State Trooper talked to that guy ... and took his word over mine, because why? I had been in counseling. And WHY had I been in counseling? Because I had turned state witness against a murderer, who is today sitting in prison and I had been offered federal witness protection because of the severity of the crime, and therefore PTSD and a "nerve problem". Therefore, by default I should be blamed for the car accident??? I was good enough to serve as a witness in a federal murder case, but not good enough to serve as a witness in a car accident?
DISCRIMINATION. I switched to Geico auto insurance. Geico found it very , very odd that the Insurance investigator put points on my lisence, but the judge at the court house threw out the charges and put no points on my lisence. You know why? Because that same preacher called the District Attorney and explained what happened and the D.A. threw out the charges as "ridiculous". The preacher called me with the good news, "You don't have to go to court. The charges were thrown out." So there were no points from the courts. And that same preacher called Nationwide and tried to deal with them, and they told him, "We would rather give the other guy the benefit of the doubt, because of her 'nerve problem'". So my insurance was charged lock, stock and barrel for HIS NEGLIGENCE and WRECKLESS DRIVING. The idiots weren't even wearing seatbelts, if that gives you any inkling of a clue to what regard they have for road laws.
Yup, the court threw it out as "ridiculous". Nationwide discriminated, and let a moron off the hook and blamed THEIR OWN customer, based on DISCRIMINATION. They never even bothered to visit me, and get my side of the story. DISCRIMINATION ALL THE WAY DOWN.
I use Geico Auto Insurance, today.
Nationwide is not on your side.
--
I've had to constantly battle people who did _not_ have my kids' best interests at heart, and a mountain of gossip and slander hurled at me.
I know the meaning of DISCRIMINATION and PREJUDICE in this society.
To answer your question: BECAUSE OF IGNORANCE IN SOCIETY... I STILL DO NOT HAVE AN OFFICIAL DIAGNOSIS. My children do... there's lots of services for kids, but not adults.
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
Last edited by AspieForty on 12 May 2010, 10:28 am, edited 1 time in total.
AspieForty - It is all based on ignorance in society. It does scare me that once my daughter is out of high school, the support for her ends. Because AS is a high-functioning disorder and those who have it do manage to function, sadly it isn't given priority. This is why I'm trying to teach my daughter to be an advocate for people with AS. We were just pleasantly surprised to learn she has some natural speaking talent...not a bit shy...so I hope she can use this talent to help educate others about what it is like to have Autism/Aspergers. Her 1st chance at this will be speaking to our church high school youth group sometime in the near future.
My friend who has AS has a similar story where so much in her life has gone wrong due to discrimination and having suffered verbal abuse in childhood. She's in her mid 50's and at the time she was a young child, there wasn't near as much known about the disorder there is now. There is still a long way to go.
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
The support doesn't have to end. Aspergers Syndrome is a very serious condition... some people are born into better circumstances than others. Until a person gains coping skills, they cannot function or have meaningful skills. Your daughter was caught young, and has a hope of receiving help for skills at a young age... Aspies can become fairly functional and lead meaningful lives.
She was lucky to receive a diagnosis. One of my children (pointed out by the Autism specialist) was having a terrible time coping with her (then undiagnosed) autism all the way into the 7th Grade (my oldest daughter got tossed around by incompetance all the way until age 17 and 12th Grade), and later (as he forewarned) -- yup, the younger one began threatening to hurt herself, because of wayyyyy too many people "getting in her face" and trying to "fix her" -- and she did the only thing she knew how to get them to back off. She threatened to hurt herself... the entire time I was on the sideline, telling those people, "There's too many people. All the talking AT HER, is stressing her out." Nobody was listening... I mean, afterall, what the **** could an Autistic mother, possibly know about her own Autistic daughter's best interests?
Also, I edited my post to you, explaining how people trying to "help me" ended up in another misdiagnosis. Talk about PTSD... 10 years of worthless wasted counseling sessions, and I GOT MISDIAGNOSED AGAIN! due to incompetance and ignorance
Ummm, Aspergers people certainly do care if they hurt people's feelings... they simply lack the skills to recognize when they have, or how to prevent doing it:
12 Common Myths About Asperger's Syndrome | HealthMad
Oct 8, 2009 ... MYTH: Everyone with Asperger's Syndrome is a genius. ... MYTH: People with Asperger's have no empathy for others. ...
http://healthmad.com/mental-health/12-c ... -syndrome/
Myths about Aspergers
This page is dedicated to myths about. Aspergers Syndrome, Which aren't often true.
Myth: Asp's have no empathy. Myth- Asp's can never make eye contact. ...
www.aspergersgirl.com/myths.html
*OBVIOUSLY* -- NOT QUALIFIED TO DIAGNOSE ASPERGERS! She was spouting off a leading myth about Aspergers Syndrome. "People with Aspergers Syndrome have no human empathy." is pure bologna.
Professionals in mental health SHOULD know better. They have NO EXCUSE.
Yeah... my two daughters were in the 7th Grade, and 12th Grade and were completely overlooked... I approached the guidance counselor at college and raised the question on this LEARNING DISABILITY back after they began speculating on A.S. in my son. The Guidance Counselor *rolling eyes* didn't care to discuss and gave me the "Shut up and get back to classes and stop wasting time" treatment and my daughter got that same shaft when she questioned the High School Guidance Counselor. The High School Counselor said, "I don't see Aspergers Syndrome in you." and dismissed her.
FUNNY... But the Child Autism Specialist saw it in her, and severely too.
Something is wrong with the Medical and Education system. Girls and women are being overlooked, enough so that there is a MYTH that "more boys have Aspergers than girls."
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
Thank you AspieForty, this has all been very enlightening. Having read your posts and in thinking back to what my friend who has AS has told me, I have a question for you and anyone else who would be interested in responding.
Do you think...as a result of being misunderstood by NTs for so long that when you do have to address NTs you feel you have to be "battle ready" and on the defense? Have you learned from experience that most likely things are not going to go well?
Have their been any experiences with therapists that have gone well?When I read your post about the therapist causing your daughter more anxiety and distress, it seemed to me llike the whole session (if you will forgive the comparison) seemed like a train wreck. I see the lack of ability on the therapist's part to communicate in a way that is not distressing or threatening.
What I am hearing from you is that people who are in the field of helping persons with special needs seem to be walking textbooks and not capable of understanding the communication barrier. There are lots of assumptions, labels and genralizations being thrown around about the AS community. As a result of this, it would be understandable that you and others with AS or probable AS would naturally become conditioned to things not going well, be frustrated, and lose faith in their being any real help out there. Am I on the right track?
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
Do you think...as a result of being misunderstood by NTs for so long that when you do have to address NTs you feel you have to be "battle ready" and on the defense? Have you learned from experience that most likely things are not going to go well?
Oh... they read Wikipedia or a couple pages from psychological textbooks, and are ready to take on Autism... afterall, movies like "Rain Man" couldn't be wrong. Right?
Exceptionally bad portrayals of the autistic, episode 03
http://www.youtube.com/user/aspie182 (One very resentful Aspie, IMHO).
[youtube]http://www.youtube.com/watch?v=zF7NXgeoejo[/youtube]
Yeah, recently those two women that were there to "help" my daughters, -- out of desperation, I had no choice but to ask for their dismissal. The third community based service worker on their team, a man was okay... you see, men don't have a tendency to blab, blab, blab, blab an Aspergers person to death...men tend to get to the point. -- So our family chose to keep the male employee, he doesn't "meddle" in our affairs like the 2 women were doing. They were counseling my 2nd daughter to death... it was awful, and I was running myself ragged -- in one week alone I made 30 mile trips 4x in just one week seeing doctors / specialist on top of a lot of other appointments (sometimes three different agencies in one day) and blab-woman showed up asking for me to account, for what I did with all my time, as if I weren't doing enough. She swore I was taking it wrong, but
1. I really did not feel like a child who must "account for my schedule"... and especially, *surprise* give me a run down of every thing you've done this week...
2. After a long long day...
She was royally getting on my nerves. Twice she came into my home like that, KNOWING the way she was speaking to me, was asking to provoke a confrontation. After all the mistakes they'd already made, i.e., setting me up with a quack... failing to deliver papers to the doctor... failure to get information flowing between school and doctors... and then even turned around and BLAMED ME for some of their errors. Outright lied in one email about her failure to address my concerns... the list goes on and on and on. I'm tolerant, up to a point. There were wayyyyyyy to many errors, and one of their supervisors agreed it was unacceptable. The referring agency wanted me to file an official complaint (I did not follow through on filing the complaint because I was trying to be "nice" and "forgiving") -- despite all the problems those two ignorant women stirred up... I'm just wanting to be left alone, and see my children get what they need. That's ALL I care about. I'm really not a vindictive person, but I wanted those two women OUT OF OUR LIVES to prevent further traumatizing meddling and bungling.
She and her female-co-worker, were relieved of any further "services" for me or my children.
There is a vast difference between assuming a person understands, and actually understanding.
Yes.
BTW, thanks for taking the time to be objective. Your first email sounded like you were very stressed out.
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
nick007
Veteran
Joined: 4 May 2010
Gender: Male
Posts: 27,726
Location: was Louisiana but now Vermont in capitalistic military dictatorship called USA
YES
I don't know about NTs per-se but my mom does not understand me & we usually end up having arguments because I have to over explain my rezoning of things.
I had some bad experiences with docs/psychs/counselors myself. When I was a toddler my mom asked my GP(general practitioner) if I could be autistic & he just lathed & said "Nick's just being Nick". A couple of people suspected I had AS but when I got tested years ago; AS got ruled out & I was officially diagnosed with most every possible disorder that could be somewhat related to AS instead. I've been diagnosed as Dyslexic & ADHD when I started school & a doc who re-certified me as dyslexic in HS suspected AS but didn't test. A coup.le years after HS; I had a break-down(long story but I had something happen & was suffering from sever emotional problems) & the 1st psych I saw also suspected AS amongst other things & referred me for testing but AS got ruled out in favor of Schizoid Personality Disorder, I was also given diagnoses of Obsessive Compulsive Personality Disorder, Schizotypal Personality disorder, Obsessive Compulsive Disorder, Social Anxiety disorder, Post Traumatic Stress disorder, Panic Anxiety, sever Depression possibly psychotic, Borderline Personality disorder, Codependent disorder. I have some physical disabilities including being extremely nearsighted so the experts felt some of my problems wer directly or indirectly related to that instead of a developmental thing. They also said I had learning problems but they did not fit the typical AS profile & they thought I communicated to well verbally for someone with AS. One doc even made a comment about how he did not think I had AS because I had a high-school diploma from a private religious college prep school. I took non college elective coarses when I could & some of my teachers curved my grade in my other classes. Doc seemed to think that people with AS tend to have very low IQs.
All the experts really did for me was push meds, run test, tried to give me advice without listening to me & charge me & my family lots of money. I quit all the docs & meds over a year ago after five years of that. I feel much better now than I ever did while I was on meds. What really ticks me off thou is that I can not qualify for any social services or programs related to AS or any developmental thing because I do not officially have that diagnoses. I think if AS was known about & diagnosed when I started school; things mite of gone much smother for me but at this point I believe I'm better off not seeing any docs.
I really wish I had some advice for you guys but the only thing I can think of is NOT to expect anyone to help your daughters except yourselves. I'm really not trying to be rude here but I feel a lot of that so-called help is not meant to be helpful. It's basically a way for the gov & community to look good by claiming that they are helping people but they do not actually want to provide it. If your area is anything like my state, Louisiana; all those programs are facing major cuts so the crooked politicians can keep wasting money
_________________
"I don't have an anger problem, I have an idiot problem!"
"Hear all, trust nothing"
https://memory-alpha.fandom.com/wiki/Ru ... cquisition
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
Let's put it this way, too... assumptions about people, can be a very dangerous thing. Just because a person stays mostly in isolation, dresses in 10 year old comfortable clothing, and doesn't "get around the block" and minds their own business, and doesn't have much of an opinion to share with neighbors... doesn't wear cosmetics or jewelry... doesn't make a big splash show or impression... doesn't look that glamorous dressed down, and avoiding attention... doesn't make that person ret*d or a completely socially dysfunctional lost cause. And though I might be completely ignored or un-noticed by neighbors, or taken for granted by those people hired to assist us, because I don't stick out (except for my quirks and oddities like being a loner)... doesn't mean these people in this community know ANYTHING about my intelligence, potential, or true self.
They don't see, but what I show them. The same goes for those "professionals"... they presume too much about people.
Today, I brought my girls to the beach. I stopped at one store, and found a dress I absolutely couldn't resist. I'll hide it in my closet for five years until some really special occasion comes up.
Does that fashion-sense look Autistic to you?
Autistics are suppose to be illiterate socially-misfit morons... at least some people assume way too much... even, people who meet me. Oh... "She can't this and she can't that.. tee hee hee, I'm going to 'help' her and her family by taking advantage of them when their back is turned." and end up trying to hurt my family in their ignorance, whether its deliberate or not, I won't presume to know what their problem is. But people have tried to "fix us" and "help us" and I don't need that kind of "help" and we're not "broken".
They presume I'm "stupid" afterall, I'm autistic... right?
Ignorant, annoying presumptions. Two of those "help" workers recently got canned and NO, of course they didn't see it coming. I tend to keep my mouth shut and watch / listen. Even if I'm not processing things on the frequency of "normal people" (I catch just as much, if not more so, though in a very different way) yes, I expect the worst out of ignorant, misinformed people, so I'm actively remembering the actions people make, the things they say... and the first contradiction or lie... it only takes simple observations, questions, judgment to know whether people are up to no good or what they are... not saying I'm always accurate, but often I am. And have learned to some degree (when forced into it) to stand for my rights.. maternal instinct is one thing Autism did not deprive me of (so much for the myth about "human empathy"). Just because they were hired by the state to help us coordinate our family... doesn't mean we're obligated to accept getting treated like a "Ward of the State". Myself and my children have high IQ's ... so you can believe me, when I say I RESENT when people talk down to me, or "presume" things . . .
I resent certain attitudes, bitterly.
My son... he is Aspergers Syndrome... and constantly creating these strange, unusual structures... when he was about 3, he was constructing these kind of things, with Legos... or other things, like popsickle sticks... some of them had a "feel" of mathematics / Architect to them. He's amazing.
But some "professionals," have seen him during his less than social moments... and judge him by only a portion of his whole potential / personality / character, and they do tend to focus and dwell on the negative things (oh, you're ret*d and its all a downward spiral from here)... and when people treat you like that... of course you don't feel lovey-dovey toward them.
((Notice the crayon "angry faces" all over his blocks. He did that during one of his meltdowns. He lost his biological father, who never spent much time with him anyway. There's nobody around to teach him about guy-things like cars. So, being autistic, sometimes my son tries to get the feelings that are inside, on the outside, but goes about it in 1001 ways.... all the same, he's communicating to the outside world how he feels.)) Sadly, there are some very ignorant people who would see those "angry faces" on the blocks, and accuse him of being "possessed by a demon," or some other hysterical nonsense. He's trying to communicate what he feels, but is so overwhelmed, and lacks the filters (to recognize to outsiders it appears to be "disturbed behavior" -- and I'm sure it does...) but that's where knowledge, understanding and most of all, acceptance comes in at.
Is the answer to get angry at him, and show "hate" and "intolerance" toward him because he has difficulty expressing and processing those inner-feelings?
When Aspies are criticized for their quirky self-expression, that's when they stop expressing themselves at all and begin bottling everything inside. That, is not healthy... in fact, its very dangerous. One day the children grow to become young men... better they grew up feeling they were loved, accepted and shown a better way to channel negative emotional energy. That's where understanding (of self and from people on the outside), and coping skills are so crucial. Intervention at a young age, is the best thing that could've ever happened for my son. Yes, and the child autism specialist warned me my son was feeling a very real absence since his biological father passed away, although verbally, my son expressed indifference. I think he feels that absence that a "Dad" should be there, not necessarily his biological father... somebody who does "Guy Things" with him. He never had that in his life, and it tears my heart out.
They're so eager to consign you to the outer limits with their "you can't" and "you never will" attitudes... stereotypes and prejudgmental prejudice.
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
Reading all the testimony here, I can see how important that it is that you come into contact with the right people when getting support for your children. Everything in our society is so "label" driven. I have to wonder if part of the problem is that when support is offered through state-based agencies, for legal purposes, they have to apply the label they think best fits per the state's rules. Neurology just isn't that simple. So many conditions overlap one another.
Yes, I do get very overwhelmed and stressed out being the mother of a teenager with AS and also the wife of a husband that is at least, AS-like. I don't know if this translates into something people with AS can understand, but it can get tough when you are doing everything you know how...turning things over and over, trying to view things from every conceivable angle to make sure you've covered the bases ...only to be told..."nevermind, you don't understand". I really am trying. When they shut down on me, and shut me out, it's like I've failed them. Usually, at some point later, after they've had time to cool down, we can approach things again and get past it.
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
You might consider,
http://www.autism-pdd.net/respite.html
Namely, the emphasis on your stress... and a night out for the parents.
http://www.autism-pdd.net/respite.html
/EXCERPT
Respite care is short term care that helps a family take a break from the daily routine and stress. It can be provided in the client's home or in a variety of out of home settings.
Respite care is an essential part of the overall support that families may need to keep their child with a disability or chronic illness at home.
Since not all families have the same needs, respite care should always be geared to individual family needs by identifying the type of respite needed and matching the need to the services currently available, or using this information to develop services where none exist. Once identified, it is also important for families to have ready access to that type of respite, in an affordable form.
Regardless of the type of respite program utilized, the emphasis should be on orienting services toward the entire family. It is also important to bear in mind that the child will change as he or she grows and develops into an individual with his or her own personality and ideas.
In many families, it is common for children to attend day care or after-school care, interact with peers and adults outside the family, and stay with a child care provider while their parents enjoy an evening out. Respite provides these same opportunities for children with special needs.
For older individuals with a disability, respite can assist in building skills needed for independent living. Since the most appropriate living situation for many adults with a disability is in a group home or other supported environment, out-of-home respite care can enable families to test this option, explore community resources and prepare themselves and their family member with a disability for this change.
States and communities are recognizing that respite care also benefits them. On average, the costs for respite services are 65 to 70 percent less than the costs of maintaining people in institutions (Salisbury and Intagliata, 1986). The cost effectiveness of respite services allows scarce tax dollars to be used for additional community based services. During the previous decade, over 30 states passed legislation for in-home family support services, including respite care, using either direct services or voucher systems (Agosta and Bradley, 1985).
With the passage of the Children's Justice Act (Public Law 99-401) and its amendment, the Children's with Disabilities Temporary Care Reauthorization Act (P.L. 101-127), respite care has gained support at the Federal level. This legislation authorized funding to states to develop and implement affordable respite care programs and crisis nurseries. Unfortunately, while this Federal funding provides relief for some families, access and affordability continue to be issues for many families in need. Every state dispensed different versions of the services, and individual agencies devised their own criteria for length of time and funding allotments.
/EXCERPT
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
Thank you so much for the concern. I do make time for myself...or else I would go crazy. I learned that this is a MUST early on. The earlier years when the kids were small were much more stressful. Photography and scrapbooking are two of my biggest hobbies besides music and genealogy research. I meet up with my friends about 2x per month to scrapbook. This is a group of ladies I've known for about 7 or 8 years... and one of them for 16. My kids are 14 and 12 and are semi-independent. they are fine long enough for me to grocery shop or for me to run errands. My husband is very supportive of my "me" time and sees the relaxed and happy me come home instead of the overwhelmed wife that left earlier in the day. I'm sorry if it sounded like it is constant stress around here.it has just been a little overwhemling for all of us. The kids get out of school in two weeks and the calendar has been extra busy with school-related end of the year activities. All the kids are anticipating the change and routine. We know that is a challenge for kids with AS, but NTs go through it too.
Happily, my daughter has taken an interest in learning to cook some basic things like scrambled eggs, macaroni and cheese, grilled cheese, and making instant pudding, so I hope to help her build on these life skills this summer. Now, if I could just get her interested in doing the dishes! LOL.
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
Money usually works.
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
nick007
Veteran
Joined: 4 May 2010
Gender: Male
Posts: 27,726
Location: was Louisiana but now Vermont in capitalistic military dictatorship called USA
Money usually works.
Or spend the money on a dish-washer Ours broke last week but we had it for over 10years. Hope we get new one soon so I won't have to wash every nite
_________________
"I don't have an anger problem, I have an idiot problem!"
"Hear all, trust nothing"
https://memory-alpha.fandom.com/wiki/Ru ... cquisition
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
Or spend the money on a dish-washer Ours broke last week but we had it for over 10years. Hope we get new one soon so I won't have to wash every nite
Genius. never had one, I wish I did.
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
AspieForty
Supporting Member
Joined: 4 Apr 2010
Age: 55
Gender: Female
Posts: 568
Location: North Carolina, USA
What kind of photography do you do?
I have a Canon S3-IS (6 megapixel). I like photography of local wildlife, and then identifying the species.
Southern Flannel Moth
Viceroy Butterfly
Sounds like my daughter. She's 18, and taken an interest in recipes. She likes to cook whole-wheat... observing her own special dietary needs.
_________________
3/3 children diagnosed Asperger/PDD-NOS(2009-2010)
http://autism.about.com/od/whatisautism/f/
Aspie+PTSD http://www.wrongplanet.net/postt125554.html don't/won't dwell on it
"Chaos, Panic, Pandemonium, My Work Here Is Done."
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