The View From Both Sides

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I have been on both sides of the Asperger situation, both as an aspie myself, and as a case worker in a local government mental health setting. I will simply put forth things that I have witnessed. Perhaps it will shed some light for you.

When I started that particular job, I was told by my boss and others about the Asperger's clients. They were initially explained to me thusly: "...and then there's a form of autism called Asperger's Disorder, and those people can be so crazy. They blurt out whatever they're thinking with no filters, they have no clue how to act around other people, and they usually drive away everybody who cares for them. Why, we had one client who's elderly parents couldn't take living with their adult Asperger's son another day, so they gave him money and sent him to the movies. When he came back, they had moved out with no forwarding address and no note. So these clients are very challenging and will drive you nuts. Ask for help if they get to be too much for you."

I thought, WOW, these people sound looney.

Because I am a voracious reader, and there was some downtime in the beginning, I started reading case histories (including medical histories). The kids who didn't talk, although they were perfectly capable of doing so, who flapped their hands when distressed or bored, who were bullied mercilessly in school, and who drove their parents crazy with constant chatter about one subject only with no reciprocating conversation sounded just like me when I was little.

I had worked hard my whole life to hide this, and as a female, the ability to socialize and garner friends is the most important ability a girl can have. To prefer to be alone as a female is perceived somewhat differently by NTs. The male may be considered a maverick or a lone wolf, the female is considered to be suffering a severe defect.

As I started seeing clients in intake sessions, I could pick out every one of the aspies. I finally went to a doctor and had my suspicions confirmed for myself, as every day continued to be a struggle to be on the NT judgmental side of it, as well as suffering from it too. After I found out, I told my boss. She never treated me the same after that. Suddenly I became one of "them", a weirdo, a loaded cannon that would and did go off at unexpected times. Others who were my friends in the workplace did mention my boss's 180 degree turn in her treatment of me.

I continued to work there for a time, and my intake meetings with aspies would go on for four hours, as I would reveal my own diagnosis in hopes of making it easier for them to open up, and boy did it! My boss would become agitated if she suspected that I revealed my own diagnosis, as if it would make the agency look less legitimate somehow. We were supposed to be up in our ivory towers, looking way down at the poor little folk who would come to us in distress. I couldn't do it that way. Plus, once my "cover was blown", everything changed, and I was revealed as an alien, somebody who had to be watched closely.

I was really disappointed, as I believed their hype about caring about those on the autistic spectrum, and their sincere wish to "integrate" us weirdos into their world. Their behavior toward me showed that I would never be considered an equal. This is something to think about if you have to deal with a case worker. Some are genuinely caring and there is a special place in heaven for those people (men and women). Some are judgmental hypocrits who like to feel better than others. After I was told to alter state documents in files in advance of a state audit, and I blew my stack, I quit. My husband is able to support us both, thank goodness.

Now for the other side: The only client I was ever afraid of had Asperger's in spades. Because he was diagnosed as a small child, his parents were afraid to punish him, so he was allowed to do and say whatever he wanted. He had devolved into a violent little sociopath and nobody EVER corrected him. After it got to the point where he was breaking his mother's and father's arms and legs, help was called in. It was a bit like the Helen Keller story before the teacher came to stay.

Others came for help because their aspie son or daughter was angry, argumentative, demanding, and threatening. What all these parents had in common, besides an Asperger's child, is that they refused to use any sort of discipline towards their child, and gave in to increasingly greater demands. These aspies were all highly intelligent but their reasoning powers were nonexistant, like the super-bright young man with a Summa Cum Laude degree from an ivy league university who suddenly decided he was not going to go forward, but to live at home with his mother and threaten to burn the house down with her in it. I asked him what he was going to do for a living, and he said he wanted to be a UPS driver. I asked him if he liked exercise outside and he said no. I asked him if he likes to drive and he said he hates it. See what I mean? I felt badly for him, I truly did.

Then there's us garden-variety aspies, sad and confused by the treatment of the outside world. We try to be social and it goes awry nearly every time. We have our little rituals and things which comfort us, but which drive others crazy. When things get weird we shut down and beam ourselves out of the situation entirely...then others assume we don't care. We drive others crazy with our talking about stuff that only we care about. We are genius in one area, and completely ret*d in another, sometimes to an extreme degree.

The standard treatment for Asperger's in these government medical settings is almost always drugs. Not the fun ones, but the ones that whack your brain with a sledge hammer until you're quiet and drooling in a corner. If they cannot make the aspie "normal", they assume the next best thing is to dope him to the gills (typically an antidepressant and an extra hammer like Seroquel or Abilify), perhaps even a little xanax for every time his temper flares up.

Counseling is of little benefit as the counselor is typically a psychiatrist who is more than happy to write up the 'scripts to subdue the patient 24/7. Sometimes the drugs are necessary because there is some psychosis going on too, but usually it's to make it easier for the parents and the school to deal with them.

I apologize for the length of this, but I have seen more than I can post all at once.

So, having been "on both sides" of the issue, I have abdicated one side in favor of the other. They are pushing compliance and obedience for the sake of convenience. My advice is, if you're feeling a bit crazy as an aspie, there are some things you can do that I have found to work wonders on the brain:

1. EAT RIGHT. You cannot deny the science of good nutrition when it comes to optimal brain function. But we love the goodies, right? Learn to eat healthfully and save the treats for only a few times a week. Sugar makes us less focused and more irritable when it wears off.

2. Take supplements. Vitamins and minerals, along with calming herbs like valerian root and holy basil help so much with mood and ability to handle stress. You'll also feel somewhat happier and less likely to be stubborn and argumentative.

3. EXERCISE. I cannot emphasize this enough. You'll look awesome, feel stronger, sleep better, and your stress level with be lowered greatly.

4. Take the time to observe NTs in action. You can do this on TV if you don't want to get out of your lair. What they say when they greet a friend, a lover, a familly member, a coworker, a stranger, etc. Observe the body language carefully. It pays to be a good mimic, it really does. Look at it this way: If you were suddenly plucked off this planet and dumped onto an alien world, you would try to learn the language (spoken and body), and learn their ways in order to get around on their planet. Same thing here, we're dumped on planet Earth without the instinctual mechanisms to successfully integrate into the society we're supposed to, so we must be as aliens learning the language and the ways of the NTs. Be an intrepid explorer!

5. Don't beat yourself up on things that you cannot control, but do strive to do better next time. Each day brings a fresh opportunity, if not for success, then at least for a sort of redemption.

6. Whenever you get mad, think hard before going off on others. You may have just misinterpreted somebody. This also goes for online posting. Once you post it, you can't take it back, so think twice.

7. Everybody's feelings have value, so beware not to step on other's feelings, whether you think they deserve it or not. You will never regret being kind, but you will always regret being mean.

Thank you all for letting me share this. I'm so grateful there's a forum where I could actually write this stuff and have somebody understand it.

I was very resentful of my parents when I was a kid because they didn't hesitate to discipline me and never let me get away with anything. I was a hateful holy terror when they'd spank or ground me and always swore I was going to run away and just disappear - of course, my rational mind wouldn't consider it until I could plan everything out in perfect detail and find a way to survive without missing a meal or sleeping on the street, which I couldn't, so I never did.

I thank gods now for their refusal to take any crap from me. Its one of the reasons I'm kinda glad I wasn't diagnosed as a child, so they treated me the way they would have treated any unruly kid and insisted that I learn to behave like a civilized human being and treat people as well as I wanted them to treat me. It sucks that Aspies who grow up with no discipline at all are so often the ones who get all the press. It just lends to a stereotype we'd all be better off without.

I would encourage parents of AS kids to pay close attention to the difference between a meltdown and a tantrum. I sympathize with anyone who's having an emotional collapse due to overwhelming sensory input, but I have ZERO sympathy for anyone who's throwing a hissy fit just to release their own frustration at not getting their way. A few whacks across the glutes never killed anyone (though many of us have acted like it would ) , and 'time out' means sitting alone, staring at the corner with nothing to do but think about why you're there, not being sent to your room to play with toys or read. You just have to realize that by not being the bad guy now, you're doing that child you claim to love a lifetime of disservice by turning them into a complete @ssh*le.

Oh, and OP - absolutely agree about the diet and exercise. It helps maintain sanity, ward off depression keeps the blood flowing to the brain for peak cognitive ability and keeps you looking younger. Plus, the Aspie brain is perfectly suited to creating an exercise 'routine' that you can keep up for a lifetime. Do it every day for a month and you won't be able to stop.

I've met a few autistic people who grew up with no discipline, and wow... oh hai selfishness. One of them seems to be essentially sociopathic and has tried to kill people for trivial things they do that she doesn't like. Another one just acts like a spoiled kid grown up, and still does things like acting pathetic to get massive amounts of money for expensive toys. It's really alarming what that will do to a person.

Your post leads me to point out the inherent difficulty with disciplining Aspie children. All I know is the experience of watching my brother grow up (he is 2 years younger than me) and my daughter. First of all my brother: My mother bounced back and forth between abusive discipline (slapping, demeaning, hitting with boards) and no discipline at all. When discipline was attempted with my brother he would become angry and aggressive. There were many times I was afraid that someone in my house was going to get very, very seriously hurt.

Now, with my daughter I am on the front line of knowing how hard it is to discipline her. A child therapist once told me to hold my daughter down when she wouldn't stay in time outs. I held her for 4 hours and 45 minutes while she bit, screamed, urinated, and vomited on me. Nothing was going to stop her. She only stopped after that amount of time because she basically passed out in exhaustion. Did she learn anything? No, she refused time out the very next time! That was as close as I've ever come to inflicting "abuse" on my daughter all because a "therapist" who didn't know squat about AS told me to. My daughter has the will unlike anyone else I've ever met. Now when I send her to her room I must lock the door. Many times she pounds on the door and she has taken objects and made holes in the walls and door. When she enters "fight or flight" it is impossible to discipline her. Only after the calm down has occurred can any learning happen. Only through intelligent discussion of the events and what went wrong can she gain understanding of the "rules".

Now I know a lot of this might sound negative but I am only meaning to give another side to the parents who cannot discipline their out of control children. I fear so much that my daughter will end up institutionalized due to her inability to act rationally when she's "crossed the line". I have looked into hiring behavior analysts to come into my home to help. The only good thing is that she mainly "meltsdown" at home where she is safe to do so but I still struggle constantly with the "sticker charts", "loss of privileges" and timeouts. Disciplining Aspies is not an easy task at all, at least not my daughter.

I had actually spoken to parents with aspie children, and they basically told me that the reason they didn't feel comfortable disciplining their children is because they weren't able to tell what was "autistic" behavior versus what was just plain "bad" behavior.

I told them that it was fairly easy to distinguish the autistic behavior. If they take their kid to the local WalMart, and he or she becomes overwhelmed and "melts down", that's autistic behavior. If a situation is stressful, people are yelling at each other, or kids are teasing them, and they melt down, that's autistic behavior. If the aspie child is insisting on talking about dinosaurs until their parents are ready to bust an artery, that's autistic behavior.

However, if the aspie child runs up to a sibling, takes their toy and pushes them down in the dirt, that's bad behavior. If they insist on getting their way and tantrum because they were told no, that's bad behavior. If a teen aspie is a manipulative, disrespectful smartazz, that's bad behavior. If they steal, cheat or lie, that's bad behavior.

Admittedly, disciplining an aspie child is harder because most aspies love to argue each minute point ad nauseum, but this discipline is essential. Corporal punishment is not the only way to go, there are many effective methods that a parent can use to get their point across. When I was a child, I would get beaten with an electric cord til I bled (can we say overkill?). When I had children, I would only swat their behind once when they were much younger. When they tantrumed, I allowed them to, I just wouldn't be the audience (no child likes to tantrum in private, it's always a show). Older than 7, no physical punishment, just restrictions and consequences, as they are much more able to understand what going without something they love to play with means.

I do have to agree with Willard; had I been diagnosed at an early age, many of my behaviors might have been allowed which I am now grateful were extinguished in favor of better ways. In other ways, had I known what my "problem" was, I wouldn't have struggled with feelings of being somehow "defective" or "inferior". I wouldn't have continued to put myself in social situations in which I was practically guaranteed to fail in, thereby reinforcing the low self-esteem. It's a toss-up. I did have one daughter who has some mild aspie qualities, and she was a really bull-headed child. I always stayed steadfast, though, as I knew that, if I allowed it, she would grow up to be a little dictator. My younger one was completely NT, exceptionally social, but very sensitive to noises, smells, fabrics, faces, ect. She didn't give me trouble until she got into junior high. I am now 1/2 grey because of it.

Mama to Grace, I know what you're dealing with. Some aspie kiddos have an iron will and are very hard to discipline. I do know that, for those extra-stubborn ones who's only treatment options include heavy psychotropics or institutionalization, ABA, or "Applied Behavioral Analysis" is the cutting-edge cognitive therapy in these cases. You indicated that you looked into therapies.

HOWEVER, it is grossly expensive, almost unfairly expensive. At the time I left my job a few years ago, ABA was costing $150 per HOUR. It is intensive, this is true, but this does no good if the vast majority of parents cannot afford it. Good ABA therapy works if there is at least 10 hours per week spent in therapy. The therapists come to the house, spend time observing the child, then creates a treatment plan. I have spoken to parents who say that it is a Godsend.

I would check with your local agency to see if there is help available in your area (usually grant programs) to pay for ABA for your daughter. That may be the key that opens up her world so she has awareness of her own behaviors and how they affect others.

Also, have you checked her for any health problems? How is her diet? I have had another client who had a daughter who sounds just like yours, and she found a doctor here in the DFW area who specializes in autism treatment via nutritional supplements and certain enzymes. Again, the supplements were expensive, but the mother swore by this treatment and stated that it was the only thing that saved her daughter from going to the state home. There may be a doc in your area who is trying these treatments. She may be suffering from a deficiency in something which is affecting her neurologically. Sometimes a few molecules of the right thing in the brain make all the difference, especially with tantruming and repeating ritualistic physical behaviors.

Others have said that they tried the chelation therapy with no positive results whatsoever. But this treatment situation is bound to change, because the number of children under the age of 10 who are being diagnosed with autism spectrum disorder is exploding exponentially. In any case, best of luck to you!

I really appreciated this thoughtful and well-articulated post. I am a parent to teenager who is on the spectrum, and your insight and suggestions are invaluable. I especially agree with your comments regarding the need for discipline. Thanks for sharing!

They have done the basic testing of my daughter at the Dev Pediatrician. Nothing spectacular. She is on only whole foods, no chemicals whatsoever-no medications either. She has eczema and constant "itchiness" of her entire body. She can go into periods where she wants to pull her skin off because she feels so itchy. I have tried enzymes with no success. The dye free diet has helped somewhat. The current problem is that she is obsessed with iCarly, which is a tv show where they speak very rudely to each other. She scripts it and speaks rudely to others. I cannot get her to disassociate with the tv show when she is not watching. Watching it consumes her-she wants to do it all the time. I've thought about removing the tv from our house, but would that actually solve it?

When she is calm I can talk to her about her behaviors. I can get her to agree that if x happens then y will happen. Such as if she hits me or kicks me then she goes to her room. Unlike most Aspies (I think she's actually HFA but that's all semantics) she HATES to be forcefully made to be alone. When she goes into meltdown she NEEDS me there. You can see the panic in her face and body and she is truly scared. She will ask for me to apply pressure, but then when I do she becomes irritated almost as though it doesn't relieve the "sensation". She is just getting to the age where she is analyzing her own experience. I can truly tell she doesn't want to misbehave and I try to remember what it must be like to live in a body that doesn't feel "good" so much of the time.

When she is calm she is the sweetest with me. She really likes to cuddle (on her own terms) and tickle. But when something sets her off well, the world better watch out because she won't suffer in silence, she will make her unpleasantness be known.

She has a strong will, that's for sure. She would never let the dentist survey her teeth. After many appts they finally made an attempt which set her off and she wound up being put in a papoose board like a straight jacket for kids with her head velcroed down. Most kids would keep that frantic behavior in check but the harder they fought to calm her, the more agitated she became. After that time they wouldn't see her in their office unless I agreed to have her put under general anesthesia. It's just so hard to describe the all encompassing eggshells that I walk on to prevent that "fight or flight" mechanism from kicking in.

The behavior analysts I was looking into specialize in ABA and also Behavior Modification Plans. I just don't know if they could go up against the will of my daughter. It is not as if she doesn't have the motivation to behave, it's just that so many things set her off and then she lacks the ability to calm herself. It's really painful to see.

Mama to Grace, I feel your pain. Mothers suffer right along with the children, no matter what their plight.

Buryuntime, the children for whom ABA therapy would be most beneficial really do not function at a level higher than an untrained puppy, unfortunately. I have seen some who urinate and defecate on themselves whenever the urge strikes them, and then play in it, drawing pictures on the wall with it, maybe even eat it, etc. They NEVER speak and have a hard time communicating their wants and needs with anything more than screams, grunts, and tantrums. They are so in their own world that they cannot be reached by anything other than intensive intervention. They are not happy to be that way either. They know something is way off but they lack the capacity to control it.

Besides, I'm not advocating for it as much as letting folks know what the current treatment options are. For some parents, it IS a Godsend. I haven't seen too many kids with Asperger's who need this type of treatment, but there are severe autism spectrum disorders out there, and this help is desperately needed. Better this treatment at home with a family who loves them, or state institutionalization with a bunch of low-paid, unhappy employees who are overworked and could care less.

A good post there, Solitaire. Thanks.