Three Aspergers Kids and Mom STILL Slipping Thru Cracks

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This is my second post.

I'll edit my first post, to introduce myself to the community. My daughter is an Aspie and on this site, somewhere. She's the one who told me about Wrong Planet.

I knew I had tremendous difficulty socialization-wise, my entire life. Two broken marriages, a couple dishonest boyfriend/fiances... heartbreaking, and isolation.

Somehow I came through it with three children and alone, then giving up, and staying 10 years in isolation. The school began looking at my youngest child in Pre-K for some kind of mysterious "problem," then after several years observation, and in elementary school, they began telling me he was suspected for Aspergers Syndrome. I had never heard of such a thing, so I began reading on A.S. in 2006.
Seeing how closely the symptoms described my own self, I went to the college guidance counselor asking, how do I find an Adult Aspergers specialist? But, as is so typical, he dismissed my concern out of hand as if it were nothing.
I went to mental health professsionals and asked how to find an Adult Aspergers specialist, they too didn't seem to give a **** .
You see, girls slip through the cracks because they're typically less aggressive than boys are. They're to be dismissed, ignored, shut up... go away and leave me alone 'tude...

Finally in 2009, my son is verified Aspergers by a specialist. My oldest daughter is 17 by that time, and with my son's diagnosis by a specialist, a counselor began looking closer at my oldest daughter's behavior problems and diagnosed her with it.
Therefore, with 2 children (the oldest and youngest), I began questioning my 2nd child in 7th grade who was struggling with difficulties, I insisted, I wanted her to see the specialist to rule out any possibility, just in case.
Like before, family, and those around us, "No no, she doesn't have Aspergers...." Scoffing, laughing about it as "impossible". Nobody ever noticed or cared. The Autism specialist had a vastly different opinion when my 2nd oldest arrived at her appointment, and after the examination was complete, told me "Your daughter has Aspergers in the Spades (not only Aspergers, but a very difficult time struggling with it)."
So, that was two children verifiably Aspergers. The same day, I asked him to schedule my oldest daughter, an unconfirmed Aspergers -- but suspected by her counselor, for examination as well.
As you may guess, the oldest saw the Child Autism Specialist, in spite of her High School guidance counselor telling her years before, "I just can't see you being Aspergers" and family shrugging it off as nonsensical speculation, and my mother scoffing, "Three out of three children would be impossible." Well... our family beat the odds, because my daughter (who is a member of this forum) was the last in line for appointments with a child autism specialist, and she is indeed Aspergers.

Three out of three children.

I'm in my 40's... lived in isolation my entire life, ignored, treated badly by people because I was "different" (shy, awkward, sensitive, etc), and nope, not one specialist yet has provided me with a diagnosis (though its obvious what's going on here).
Same old run-around and hassles for adult asperger sufferers. I was recently referred to a woman who supposedly had credentials to make a diagnosis (the heck with adult aspergers, only children can get seen by experts and treatment), I was later told by the community workers who sent me to her, that she spent a grand total of about one evening brushing up on what Autism is, and when she sit down with me for an hour... right in the middle of describing a key Asperger symptom, that is, experiences where I may have came off as "rude and insensitive" and when I realize I have been because somebody explained it to me, I FEEL AWFUL. She stopped me in the middle of discussion, and cupped her hands rather smugly. "What you're describing to me isn't Aspergers. If you were Aspergers you wouldn't care if you hurt people's feelings."

I was devastated... floored... thinking to myself (feeling like I was going to explode) I had gotten my hopes up -- and now, due to the brazen ignorance, only thinking a big traumatic "NOT AGAIN. NOT AGAIN." I knew she was IGNORANT AS BLISS about what Aspergers syndrome is. Of course we care whether or not we hurt people or their feelings. There's a stupid myth circulating that A.S. people have no human empathy.

People are falling through the cracks in the system, because of ignorance in the very so-called professionals who should know better.
When the events were told to the community workers who had been called in to help my kids with coping skills... our entire family, and part of that was supposedly to help me get to an Adult Aspergers/Autism specialist, the only consolation I got out of it was the head caseworker told me, that their psychiatric worker was wrong, and she definately sees Aspergers Syndrome in all four of us (the entire family).

Three out of three kids, diagnosed A.S. by a child Autism specialist...
Youngest Son = Officially diagnosed Fall 2009
Second Oldest Daughter = Officially diagnosed about 1 month ago (2010).. slipped through cracks until 7th Grade. Right now, they're only just *beginning* IEP and help she needs.
Oldest Daughter = Officially diagnosed about 2 weeks ago (2010).. she was 17 for goodness sake, and nobody ever noticed?
...and Mommy has the same problems as the kids. I'm frustrated waiting on a valid diagnosis from somebody who actually knows what the **** they're talking about for a change. Its mind-boggling... 40 years without recognition, ignored, brushed off, slipping through the cracks... living in isolation. Many times I've prayed to God, "WHY was I put on this earth, just to endure every day alone, and treated as though I've committed a crime?"

At least now, knowing what has plagued my children and myself, I can go forward with some understanding. But I still don't have the official diagnosis, in black and white, on paper and I want the mental health system with all its cracks and broken bureaucracy and ignorance, to choke it up. How many other people are walking around with the condition, and not understanding what's wrong with their life. You know, the cliche about the condition being a "Blessing or curse".

I think the greatest blessing (in a truly bittersweet kind of way) I've had so far, is my children diagnosed. Although I don't have the documentation (for myself as A.S.), I think three out of three kids in combination with a lifetime of isolated Aspergers behaviors, sort of clinches what's up. Do I really *need* a diagnosis at this point?

I'm happy to find this community of A.S. / Autism people and welcome any advice, where to go, what to do??? The Aspergers issue (though I've known about it since about 2006), I've lived with it my entire life, and just now touching on the tip of the iceberg... education and coping skills... all of it, all in all, is relatively new to me, and my entire family.

To WrongPlanet!! !

welcome!
this is a great community to ask questions, you are certain to get thoughtful responses

Welcome aboard the Wrong Planet, AspieForty. Glad to see you here.

you should look into research diagnosis's they pay you and you get a free evaluation sometimes

I'd be glad to do it just for sake of research. I am aware they're trying to define a cause... and have no real answers. I'm wondering what genetic link may exist between myself and my children? I'd willingly participate in ongoing research.

How certain are you that you have AS? Because if you're really certain you could just try going to a different psychiatrist. Maybe read up a bit and try approaching it a different way and you might find that they're a bit more receptive. When I first spoke to a psychologist I actually went because I don't experience sexual attraction and didn't know what my sexuality was and it was only when I eventually mentioned that I never learned to make eye-contact until I was 17 that she clicked that I have AS. Outwardly it's very subtle in females and even psychologists and psychiatrists can't see it, so you have to bear that in mind. Right up until I finished my assessment my psychiatrist thought that my psychologist was wrong and that I had obsessive-compulsive personality disorder (which has extremely similar traits to AS). It might be worth reading up a bit and maybe trying explaining the difficulties you have in a different way to get people to take you more seriously

It certainly does seem highly likely you have AS.

But what then? Do you just want to *know* or do you want to get some therapy to try to help develop social skills?

Sadly, in my area there are very, very few resources for adults with Asperger's, and I don't live in the middle of no where.

You might be able to find a sympathetic therapist who, even if she won't "officially" diagnose you, can help you to learn better social skills and deal with the depression and anxiety and other problems that so often go with AS.

Also you might be able to find an adult support group in your area. Try GRASP, ASAN or meetup.com.

There is no support group within 50 miles for me. Again, I live in a pretty large area. It's hit or miss.

Welcome to WrongPlanet and welcome to my time warp.

Psychiatrists are the problem. I survived through my youth and teens, and so maladjusted (bullied in school, --needless to mention preyed on (statutory rape) --picked on in the work place, men preying on me because I was vulnerable (shy, awkward), felt something was terribly wrong or defective with me. It was difficult to finally grasp, just because I'm different didn't give them the right to behave like monsters, bullies, predators. I wasn't the bad person, and I didn't deserve to be raped.
But just when things were bad enough, they got worse. My self-esteem was in the dust, and thought I'd never meet/be with a nice guy. Ended up choosing somebody who turned out to be an adulterer, and maybe this isn't the place for it, but when I left him, he began threatening to harm me and my family if I didn't return. He began terrorizing me. I turned his packages, letters, tapes over to police who were investigating him for other crimes. He's sitting in prison today.

THAT EVENT, landed me in counseling for PTSD (Post Traumatic Stress Disorder)... terrible nightmares, I couldn't sleep, I had a stable job at the time as an Administrative Assistant/bookkeeper, and he messed everything up with months of terrorism. I didn't understand why the world was blowing up around me. Why I didn't have friends. Why nobody cared about me. I was in isolation beyond work. I tended to immerse in work, to escape the loneliness I felt in my life. I told all these things to counselors... I went through oodles of counselors, shrinks... nobody ever suggested Aspergers Syndrome over a ten year span in and out of counseling.
If those geniuses would've stopped for a moment and think "root problem" why she even got involved with a horrible man like that??? Aspergers Syndrome destroying my socialization skills, lead to my choices... afterall, isn't bad company better than no company??

They tried their classic diagnoses, and all were wrong. I wasn't manic depressed, I wasn't ADHD, or Schizo. I am in the same ole mood, all the time, and isolated, and lonely. I tried everything in my life to make friends, but I didn't like nightclubs, people were cruel to me at work, I got bullied at school and college, I tried dating sites (only for things to fizzle in no time)... at least I have my children. Two marriages, one to the lowest scum of the earth (I was so much of a better person, but had been made to feel like a criminal -- the stereotypes some people have against people with Aspergers Syndrome, but they didn't know it was A.S. when they were gossipping about the quirky behaviors, judging, condemning, brutal insults, like "stupid". So yes, I felt like the only kind of man I would ever have, was the kind of man nobody wanted. That's how I ended up with that monster. I didn't know it was A.S. when I was going through all that... I just knew I was different and felt "cursed".

I'm asking myself... it seems that TEN YEARS in and out of counseling, that sooner or later at least one professional would've thought of it. But, I slipped through the cracks, like so many others surely have. In their attempts to cure my "problem" they often made things worse and I gave up on their "treatment". I got tired of "victim" and dredging up the past...

I made a friend at a University which I shared mutual interests with, and *magic bullet* ahhhh, suddenly, my "brain problem" was curing itself?? Amazing how mental illnesses come and go... mysteriously... magically. No, it was that I had made a friend in my lonely isolated existence... staring at four walls can drive a person insane.

The signs were there. (*)10 years in and out of counseling, and not one professional ever stopped to question. There was no excuse.

What good are their credentials? Along with the myth that mostly only boys have it, because most of the time boys are diagnosed. (Yes, because the A.S. girls are ignored, and slipping through the cracks.) The only way it seems for a female to get noticed is by violent meltdowns. I deal with my frustration and suffering in silence, by going off to myself alone, and pouring tears, and quietly screaming inside to God... "WHY YOU MONSTER... WHY HAVE YOU PUT ME HERE TO SUFFER?" I went through years of suffering in silence on that same question. What purpose was all that I had endured??? Sure, there's people less fortunate, but that doesn't make my suffering feel any better, and ultimately, I only expect more suffering. The only peace I have found, is that at least there is a name for the condition -- and with three of three children with identical behaviors as Mommy -- I have no doubts left in my mind. Any shrink who doubts, with all things considered is either ignorant, insane, or both.

--



I have, since 2006 when my son became suspect. When a second child was diagnosed by a non-specialist counselor, I called in Community Based Services for intensive home therapy for my son... and explained to them, they had NO DOUBTS, we were a family of Aspergers. The best they could do for me, is set me up with a woman named Jennifer, who had the credentials to diagnose, but unfortunately, she was not an expert on Autism. The caseworker told me that Jennifer was asked to "read up on Aspergers" and then would see me. Surely she spent all of a couple hours, skimming information on Wikipedia about Autism ... and came away believing all the myths. So I went to the appointment with high hopes, alas, I would receive a diagnosis, documented on paper... I mean, there were 3 social workers who gave their word... and agreed, there was Aspergers going on. Well, Jennifer let me down. I left that appointment with my hopes smashed. She thought Aspergers was the same thing as low-functioning Autism or mental retardation... she told me, if I were Aspergers, I wouldn't care if I hurt people's feelings.

So-called Professionals.

They've wasted enough years of my life.

---




When I was a teenager, I read on things like Psychology (even mensa and abstract thinking) other odd topics that seemed to somehow relate to issues I sensed about myself. I read one book, that stated if you don't make eye contact with people (and I realized I didn't do that), they'll perceive you to be lying. Immediately, I began forcing myself to make eye contact while talking to people. But when I go out on dates, or other pressure encounters, I feel too awkward and look away from the person. Perhaps some of this is Aspergers, and part of it is PTSD and how brutalized I was throughout my youth and onward.

I don't even like to discuss it, because it makes most people feel uncomfortable... they're scared of what they don't understand. AGAIN... losing friends... they run at the first signs of "Baggage".

So here I am again, after 40 years... alone. Having a steady partner in my life, seems impossible... no, seemed most of my life, I was cursed to be alone. Like I'd committed a crime (even reassured by people, "If you had a man, you wouldn't know what to do with him" (a snide bully where I worked and saying that in front of the whole business -- with customers present)... it was humiliating. Constantly reminded by my own family, I had a "problem" and didn't need a bf/husband/lover... couldn't they see, they were suggesting the opposite, of what I really needed? The problem is isolation... and they were trying to crush out any hope I had for developing socialization skills.

Often times, with A.S., advice meant for your mental well-being, can be hazardous to your health.

--



Ten years on and off, through numerous counselors and shrinks. The signs and symptoms were there and never once considered as part of the equation. Laziness on their behalf to consider ALL possible explanations. They want to label everyone manic depressed, bipolar, schizophrenic.... and I'm not any of those. Yup, manic depression and schizo was tossed out... so all that was left was a "mysterious" problem they never defined.

Where did they get their credentials? Bubble gum machine or cracker jack box?

Just because something has webbed feet like a duck, doesn't make it a duck... for example, just because symptoms are similar to OCD, doesn't make the repetitive behaviors of Aspergers, "OCD" by default. Just because the Duck-Billed Platypus, or Hadrosaur have a duck bill, or webbed feet doesn't make it a duck ...Terrible misdiagnoses and malpractice... and nobody ever apologized to me, you know? I had to put up with years of people locally, gossipping "Oh she's manic depressed" when that had already been thrown out years before, after I'd interviewed with 5 Psychiatrists. Gossip doesn't stop... vicious insults... nobody apologizes. Mental Health professionals FAILED ME... and 10 years, in a downward spiral of counseling that never solved anything for me... they failed me miserably. The whole experience itself, was traumatizing as I look back.



I have THREE verifiable and official assessments on my children now.
Those reports from a Child Autism specialist will speak for me in the future.

I'm not going through the **** of malpractice in the mental health system anymore. They failed me terribly.

* Footnote, my ex-husband began his campaign of terror around 1995, so I entered counseling voluntarily, and continued on and off throughout the next five years... diagnosed with simply Post Traumatic Stress Disorder (PTSD). Unfortunately, meeting with a Quack, in 2000 who wanted to up and change my entire record to "paranoia" "manic depression" and "Schizo" and who knows what other lies, ahhhh, "religious pre-occupation" so-called obsession?? which is normal for Aspergers people... and why the so-called obsession? Because I converted to Christianity at the time and began ordering books from a distribution company (1-800-CHRISTIAN) -- after a pastor suggested it to me. I told him I wanted more indepth knowledge, such as scholar commentaries, theologians studies, Biblical history, etc .... like a typical Aspergers Syndrome person might do -- studying and developing a keen interest in a specialized topic of interest. But this behavior (which was normal for me considering I made an obsession once out of law enforcement insignia and other hobbies and constructed a large collection of patches / badges at the local department)... that certain Quack wanted to trample my Constitutional rights that protects freedom or worship and religious expression, which are protected under the Constitution and known better as the Separation of Church and State.
Malpractice and misdiagnoses is a mild understatement for what I was made to endure.

Wow, my obsessive pre-occupations really looks to be dangerous to myself and society.

When you're all alone, in isolation and can't connect to people... you improvise. You find something of mutual interest... and when all interpersonal relations fail, hey, there's snail mail.
It was still lonely, but mail with law enforcement, was better than nothing. Amazing ... I acquainted police who had the same "obsessive pre-occupation" with collecting law enforcement insignia from around the country and world. Even created a mailing list (1998 - 9/11) to share, until law enforcement departments went on high alert to domestic terrorism... then my hobby of collecting was forced to fizzle.

Such dangerous behavior... you can see the terrified expression on the Chief's face... yes?


Another photograph of my "dangerous" Asperger tendency toward pre-occupation with some topic or interest

Another photograph of my "dangerous" Asperger tendency toward pre-occupation with some topic or interest

Frightening.



What kind of nutcase obsesses like that? Write 100's or 1000's of letters, and collecting law enforcement insignia... Ooops, I forgot, the Chief must be a nutcase, 'cos when I approached the Department to ask if I could donate the collection to the department, he confided he was a collector too.



Well, I guess there's some nutcases like me in law enforcement 'cos it was an officer in Virginia who sent me a publication of law enforcement agencies, to keep up the "good work" and appreciated my enthusiasm and newsletters with further info to fellow-collectors.



Some psychiatrists think they're gods, and the rest of us haven't the competance to make decisions because we VOLUNTARILY entered counseling for Aspergers Symptoms, and instead of diagnosing Aspergers, they put us down for everything in the book... but what the real, underlying issue is.


The behaviors were there, and those professionals IGNORED what was in their face. Most of them have little or no understanding/knowledge of what Aspergers is, and if an Aspergers person is sitting in front of their face, they wouldn't recognize them.

After the Quack messed my life and medical treatment up, I saw another psychiatrist every couple of weeks for a year. He overturned the Quack's mis-diagnoses and muddling of my medical record. After a year, he left the area, and I began seeing one other doctor, who ahhhhhh, claimed I was "recovering" because my mysterious illness somewhere in my damaged brain cells were magically repairing themself ... naw, more like (by 2004) I had made a friend who happened to work at a University, and myself returned to college, and he like myself took an acute interest self in theology, the Creation vs. Evolution controversy (around 30 years), published writer on fundamentalist religions, biology, paleontology, human evolution, etc etc etc -- a keen interest in Science/Theology/History... the brain mending itself or a cure? Amazing. (NOT). Strange how those illnesses come and go like a fickle wind. Friendship is the best medicine for Aspergers Syndrome.
Even after that doc who felt I was recovering, I saw yet, two other Psychiatrists on occasion who themselves reaffirmed, "You weren't manic depressed. You were saved." (Christian faith).

I wish there were laws to protect people from medical malpractice in the mental health system. Where was the ACLU to fight in my defense?? I would love to sue the Quack for about a million bucks, since she felt at liberty to participate in malpractice by trampling my constitutional rights to freedom of religious expression.
What was even more ironic... right after our heated disagreements over her misinformed opinion on my "problem" --- the newspapers and local television showed up to do an interview for the news, and articles in three region newspapers. I had began volunteer work with the Bible Foundation, collecting old / used Bibles... even some Atheists donated their old worn out Bibles, which were being collected and distributed around the world. The media took interest in my work. I took the newspapers out there where the Quack would soon be leaving (yup, she went to California and I pity everyone living in that state now), but I laid down one of the newspaper -- a Golden opportunity -- and told them to pass the message along to the Quack, "Not everything is fixed with a pill."

The Quack never returned my calls. The Quack never apologized.
The Quack moved to the state of California to continue bungling medicine and screwing up people's lives.

The newspapers didn't feel I was "mentally ill" because I had taken a strong interest in faith and theological studies. In fact, the reporters were quite impressed with my studies, books such as The Septuagint and Expositor Greek Testament were among a few in my library mentioned in the newspaper.

I'm sure Bobby Fischer and Bill Gates and Gary Numan had days like these...

For this, education, enlightenment, study, ... one should be stygmatized as "crazy," locked up, the key thrown away, state powers cracking skulls "guilty of religious preoccupation". I know they'll do that in Communist nations, but this is the United States of America.

Last edited by AspieForty on 06 Apr 2010, 1:54 pm, edited 5 times in total.

When two diagnoses were made on 2/3 children, I contacted the state for community based services, with the questions in mind, knowing _positively now_ there was Aspergers and likely, possibly, all three children, including myself :
1. Where do we go from here? as in coping strategies.. to have a more normal life
2. Must... mandatory... get all 3 children to the Child Autism Specialist, and if they are not, let it be ruled out. If indeed the children all have autism/A.S. then the school must be made aware, so the children receive the help they need.
3. Get to an adult aspergers specialist, for my own interests.

Those were my main concerns. All three did _indeed_ positively have A.S. (Verified now).
But the community service people let me down by referring me to a Quack who knew nothing about Aspergers Syndrome.

I didn't appreciate having to drive 35 miles to and from an appointment, only to be told what I knew was true (after years of reading on A.S. myself), but a Psychiatrist is completely ignorant, that is, the myth that Aspergers people are ret*d and completely lacking in human empathy. What about Bill Gates, Bobby Fischer and others of high intelligence, or the many other gifted, sensitive individuals with Aspergers Syndrome. Obviously, the "Expert" I saw that day, didn't know what she was talking about.

I was correct. The people who referred me to her, apologized, and confessed they knew she was wrong.. confessed she had no background in Autism spectrum disorder, and confessed she was asked to "brush up" on what it is. She got her information from a website, with myths, not a authorative Psychology textbook.

It was devastating to set face to face with a Psychiatric professional, describing a KEY SYMPTOM of Aspergers Syndrome and they look at you and say, "This isn't Aspergers."

It was more than I could stomach. "Mental Health" strikes out ... again.

Yes...though, I can say that community services has helped some degree, by coordinating and acting the part of intermediator, part-time counselor for the children... between pediatrician, counselor, school, and with the parent (myself), to help us cope, and find resources to equip us with what we need to function better as an A.S. family. It's all new to me in many ways, and when they tell me that my son should be doing this or that, through my own Aspergers p.o.v., sometimes, I just don't "get it" myself, which places me under further criticism.



I did sign up with meetup and acquainted one woman with A.S. children. There is the TEACH Center, which specializes in Autism (about 35 miles from my home). Presently I am trying to think of ways to get our family socializing. We've joined a church (for starters) and have been asking around about things my kids might can become involved in... once a week at a horse farm caring for horses would be far more productive, than sitting at home glued on video games or some of the other obsessive interests my children have. My son, its always cars, cars, cars, -- he wants to identify make / model / year of the car... obsesses with automobiles / vehicles. He needs to expand and have a balance of interests....

Getting there, is the challenge, because I have my own work/hobbies/interests that can be asorbing -- and its so much easier to drown myself in work, than face the challenges of going to church or some other social function when I'd really rather be at home.

Hello AspieForty, welcome, enjoy your stay on the Wrong Planet!

Hey, mommy!

(I'm AspieForty's daughter that she mentioned)

Troops

My youngest has just been diagnosed but I understand him better better than most people. I know I probably have something going on with my history but don't really believe in pys. The only reason my son has been diagnosed is because of the school system. (He's been suspended 8 times from Kindergarten).I guess I'm kind of getting worried that I may be part of the problem, I mean I've had my life strait for a while but now I wonder if he's just coping me.

How long has he been diagnosed? Is he still in Kindergarten?? Don't beat yourself up over it.
It is the school's responsibility to develop an IEP for him. If you don't get after them to get things done, they wont.
Suspending a child everytime they have a melt-down is certainly not a solution and shame on the school. Perhaps its the classroom environment (other kids he perceives as threats) that's creating the problem instead of vis versa. Aspie children are very sensitive to their environment and its on the school to create an IEP (Individual Education Plan) to accomodate his special needs. Aspie children do better in settings with less children (is he in a normal kindergarten classroom with many children??)

I'm sure he's stressed out.

That suspension stuff isn't good. If a child learns "I will be rewarded with being sent to the comfort of staying home with Mama, if I only act up." The school was doing that to me at one point, calling me every other day to come pick up my son. I was becoming peaved, because my son was learning nothing. It was long overdue for them to change the classroom environment for your son.