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Please Help! My Daughter is Autistic.

On Kanner's, Asperger's, and PTSD





This emergence transcript is excerpted from a rather lengthy exchange between myself and a young mother. As you'll read, she wrote asking for help with her 15 year old daughter who was diagnosed with and has been treated for Kanner's Autism for more than thirteen years.

What is significant about our exchanges is that it is very possible this girl's diagnosis was wrong and that she more likely has a combination of Asperger's and Post Traumatic Stress Disorder. And although I would never attempt to diagnose anyone through email, I am hopeful that what was said may better direct her daughter to the help she needs.

Finally, I post this in the hopes that it may help others in similar situations.

On Tuesday, March 22, Rose wrote and said . . .

I have just spent days on the computer looking for answers regarding my daughter. I have read just about everything there is and nothing has made as much sense as your article on the spectrum of distraction.

My daughter was diagnosed with Autism at 18 months. We did a very intensive Lovaas program in our home for a few years then moved across the country for a good school for her. She has had every advantage and has been the center of my world.

She is 15 now and is quickly regressing. She wants to be a baby. She has been stuck there for 2-3 years. She is very high functioning and it is very difficult to understand why this is so important to her. At first it seemed like she was frightened of her body changing and growing up and wanting to be a baby, where no one asks anything of you would be a nice alternative.

I will skip 3 years into the future now. She still wants to be a baby. She will spend all of her time looking at family photos and videos of babies and children, she studies her yearbooks from elementary school and pretends she is still in first grade.

She talks like a baby, wears the color pink because baby girls do, and will not do anything that is even close to being age appropriate. She has stopped learning new skills and fights to not do school work because babies don't read etc. She has perfect pitch and can play the piano beautifully but has refused now for a few years.

She hates school because she only wants to go to daycare or elementary school and because of this has lost all of her friends. When someone asks her how old she is she will say 4 or 5 and if they ask her what school she goes to she will make something up. The only things she will do outside of the home are go to the park and climb on the baby play things, go to the pool and splash around like a small child or go places where there are small children so that she can follow them around and mimic their behavior.

She is a very smart girl and we try to reason with her.  When we do she doesn't want to hear that she can't be a baby and that growing up is fun etc., she has a violent outburst. Whenever we try to get her to do something different or something that she once enjoyed (such as piano), she has a tantrum, so we have stopped trying. These outbursts occur at random and have limited us to staying home.

In fact it is Spring Break from school and have cancelled our vacation plans to stay home, because she has gotten so out of control with this. She has no friends and in general no one wants to be around her. Please help me to understand her so that I can help her. She does have the diagnosis of Autism but I have long thought that Asperger's would be more correct since without this pre occupation of wanting to be a baby, she is very much like her typical peers. She could go so far in life if we could help her now, but if not, I fear what her future might be for her. 

What does anyone do with an adult who only wants to be a baby? I beg you to please help me in any way you can. I know that you probably understand how she got stuck in this stage and although we kept her occupied with learning all these years since her early childhood, she has found comfort going back to it now and will not let it go. We have tried doctors, behavioral interventions, and medications. Your understanding and advice is my only hope. Thank you, and I will look forward to hearing from you. 

Rose

That day, I wrote back and said ...

Hi Rose,

First, I'm so sorry for your troubles. As you know, your daughter's problems are far above average even for a girl with the early kind of autism, if indeed she even has this kind of autism.

Second, please know no ethical therapist, including me, would offer professional advice over the internet, especially in such a difficult situation. Therefore, whatever thoughts I offer, I offer not as a therapist but rather as a father and a fellow human being.

My thoughts: Even from what you write, I do see why you think she may have Asperger's rather than Kanner's, albeit she would be an unusual case even for someone with Asperger's.

Even so, with Asperger's, when you talk with the person about their obsession, they usually remain somewhat reasonable and calm. And they sometimes can talk about this topic for hours on end. So if she is constantly out of control, this may more indicate Kanner's.

To be honest, Rose, I've never met anyone who has Asperger's who has also regressed to such an early life stage after having moved past it, except, of course when they regress into occasional  tantrums. Thus, I wonder if your daughter may have more than one condition, and if your trying to define her difficulty with one diagnosis may be a part of the problem.

As you obviously know, people with Asperger's make some narrow spectrum of information their whole life focus, things like train schedules and civil war uniforms. Your daughter's obsession with things related to her being a baby could fall into this category. But unless this obsession involves gathering new information, or learning more about the information she already has, I'm not sure it would qualify. Not a definite "no" to Asperger's. I'm just not sure.

Some questions: What was she like when she was 18 months old? What was she like before this?

What led to her autism diagnosis? Did she appear especially blank or removed?

In her second year (age 1-2), did she bring you objects and tell you the word for them? Asperger's kids are usually hyperlexic (obsessed with words). In fact, this obsession often stays with them for life, and they are the consummate can label and cereal package readers when no other words are available. Thus, a lack of hyperlexic could mean her original diagnosis was correct. Maybe.

Did she engage in pseudo-speach (baby talk; interactively imitate others)? A lack of this would be a factor indicating Asperger's (and Kanner's) as a possibility.

Has she had any other narrow interests? Asperger's kids usually develop more than one narrow interest over time, sometimes discarding an old one for a new one.

Has she ever had a normal peer friendship? Asperger's kids usually gravitate to adults and older folks and fail in and around peers, although they often bypass this difficulty by having friendships with other unusual kids; e.g. the outcasts; the loners; the brainiacs; etc.

Does she correct you when you try to reach her with the truth of her life? Asperger's kids can't stand imprecise information and frequently drive everyone around them crazy with their efforts to correct people. However, "precise" to them means precisely what they see as the truth and is not necessarily any literal truth

Does she digress into her own interests after pretending to listen to you, as in, does she appear to simply wait her turn to speak and has no interest in you or in what you have to say?

Has she any physically abnormal habits, e.g. compulsive hand ringing, skin picking, ear lobe pulling, rocking, staring into the air? Does she complain about the textures of her clothes? The volume of sounds or music? The intensity of light or colors?

Does she read mouths more than eyes? You may have never noticed. Asperger's kids read mouths significantly more than eyes, normal kids, the other way around.

Do her eyes ever connect to yours when you look at each other? Does she abnormally connect to nature or to pets?

Is she blunt in any way? Does she insult people and not realize she is doing  this?

Tell me about the time in which she first regressed, 2-3 years ago. Did she experience anything at all traumatic, e.g. the loss of a friend, a pet or relative who died? Her present regression makes her seem much more like a person who has suffered a traumatic event in the time she began to regress. And yes, it is possible that puberty was her trauma.

What does she say she wants out of life? Use her words exactly if you can. Often parents miss important clues because they reinterpret their child's words.

What I mean is, often, a person's literal words offer the best way into their inner life. Normal folks often adjust these words so as to make sense of them. Unfortunately, this often obscures the only real clues to the person's condition.

What was she like at 4-5, just before she left for school. Perhaps her entry into school was the real traumatic event? She is, after all, regressing back to what appears to be her "safe space," which seems to be back to about pre-school age.

Perhaps she changed therapists during this time; 4-5. Did she suffer from the loss of anyone then?

When did you move? Perhaps this move was also traumatic?

Rose, I'm sorry I can't do much more than ask you these questions right now, but your daughter's condition is, as I said, very unusual. Therefore, I need more information to even know were to begin to point you and her for help.

My best guess is she has two conditions, Asperger's, and Post Traumatic Stress Disorder. What trauma happened? There is no way I can tell from what you're written.

More over, please know, her condition is not your fault. No one knows why Asperger's happens, and I am the only one I know of who has even offered a "how it happens" that makes sense.

My point is, you did none of this. Even kids who grow up in terrible homes often turn out fine, and definitely without something as serious as Asperger's. More so, your efforts to help your daughter are obviously very genuine and loving, and you seem to have done all that any parent could have done.

As for the mysterious trauma I'm guessing happened, know that what we might see as traumatic is often the very thing which prevents us from guessing what may really have happened, as we ourselves would not be traumatized by what sometimes traumatizes a young kid. They can be traumatized by seemingly little events, things we would never even guess would be traumas. Thus, we often overlook what we think was no real problem. Even so, perhaps something else will come to you. Perhaps there was a moment wherein you have always wondered about; a hunch moment. If so, please mention this too. And don't give up hope.

Write back and I'll do whatever I can.

Steven

Later that day, Rose wrote back and said ...

Thank you so much for taking the time to write back. You have no idea how much that means to me. I understand also that you are in no way giving professional advice, etc. to me. You seem to be a wonderful person who cares and I appreciate any advice you can give.

I suppose that I did say that I thought that my daughter may have Asperger's, but I am actually quite certain that she has Kanner's Autism. She is actually classic, but is very high functioning and without the stims and odd behavior that is typically seen with Autism.  I suppose that is more what I was trying to say.

Until recently, my plan for her was to possibly go to college and find a career in art, music, or in something in the computer field. I know that she is socially weird, but she is sweet, friendly, and smart and could make her way if she was directed into a field that would allow for that. I, now, unfortunately, see a different girl though. 

You have many questions and it may be easier for me to answer them by going to your letter and filling in rather than re typing. 

Actually this is what I did, although I am afraid it may be a little difficult to read and sorry if that was a bad choice.  I also had no idea that my answers would be so long, but to give you some type of picture they needed to be.

You may still have more questions. Thank you again and I look forward to hearing from. 

Rose

What follows is the composite Rose mentioned above.

Steven's 1st Email:
My thoughts: Even from what you write, I do see why you think she may have Asperger's rather than Kanner's, albeit she would be an unusual case even for someone with Asperger's.

Even so, with Asperger's, when you talk with the person about their obsession, they usually remain somewhat reasonable and calm. And they sometimes can talk about this topic for hours on end. So if she is constantly out of control, this may more indicate Kanner's.

Rose's Response:
You can talk to her for hours on end if you talk about letting her be a baby. Initially I did that with her before I knew it would be a problem. We say a psychologist who evaluated her and thought that the behavior was attention seeking and that we should ignore it. When she talks about being a baby or wanting to be a baby we ignore her and turn our attention to something else or try to redirect her to do something else but it typically doesn't work well. She persists as though she must get the desired answer from us, and she has several that are what we used to say before we started ignoring this behavior. It will go something like this.

I don't want to go to school, I just want to go to day care. I say come on honey, get your coat, she says, I SAID, I just want to go to daycare, did you hear me mom. I continue to ignore her by getting in the car and she will keep saying it trying to make me acknowledge her. When I don't, she will say, I know, nobody gets to stay a baby forever and that's just the way it is. That is something that I used to say to her. It will go on forever and end when she gets the desired comment from someone or she says it to herself, or it will go on until she has a huge tantrum. It seems if it is a stim, we are part of it.

Steven's 1st Email:
Rose, to be honest, I've never met anyone who has  Asperger's who has also regressed to such an early life stage after having moved past it, except, of course when they regress into occasional  tantrums. Thus, I wonder if your daughter may have more than one condition, and if you are trying to define her difficulty with one diagnosis may be a part of the problem.

Rose's Response:
I have been thinking that this is not at all about wanting to be a baby but is some type of OCD thing that she must say or do to give her comfort? It does seem she is a slave to it. When she has a tantrum, she screams, cries, hits people, throws things etc. Then after, she feels very bad about it.

Steven's 1st Email:
As you obviously know, people with Asperger's make some narrow spectrum of information their whole life focus, things like train schedules and civil war uniforms Your daughter's obsession with things related to her being a baby could fall into this category. But unless this obsession involves gathering new information, or learning more about the information she already has, I'm not sure it would qualify. she does not gather new information.....just the same things over and over. Not a definite "no." Just not sure.

Rose's Response:
We have tried focusing her in the direction that if she likes babies, she can grow up and be a nanny or a babysitter or work at a daycare with children etc. These things did not work. We have tried to give her new information which is appropriate and that has not worked.  She wants to BE the baby.  In fact she will be so excited to go on vacation and see relatives who have small children and will talk non stop for months about seeing the baby and when we are there, she can care less, and wants nothing to do with the baby. It seems to be all about the talking about being a baby.

Steven's 1st Email:
Some questions: What was she like when she was 18 months old? What was she like before this?

Rose's Response:
She is an only child and had everything a child could want. There was a lot of educational stimulus in her world and a lot of attention. She was a happy baby when she was that age. She was very fussy and difficult when she was an infant though.

She would play with her toys and initiate us to play with her. She had language and was very social.  We took her everywhere with us, and she was as comfortable in a restaurant asleep on my lap as she was in her own bed.

She didn't mind strangers and seemed to love attention. She watched a lot of videos, and around 18 months we noticed that now she wanted to just watch them for hours on end and not talk play with us.

As the weeks went on she did this more and more. She was happy to be alone with her toys just watching Sesame Street. She would mimic what the characters were doing and use their voices to speak, and the more she did this, the less she would speak to us.

Then she lost all of her language. I did notice though that the language she had was not her own. She would speak a lot and had many accents. I know this is weird, but my husband's family is from NY; my family is from the deep South. We lived in Miami at the time and a lot of friends and people she came in contact were other nationalities. She would speak with the accent of the person who she picked up the word or sentence from.

Some things were also with the accents of the characters on Sesame Street, so she might say grandma with a totally New York accent or go swim with a southern drawl or say phrases like she was from China.

Her language was advanced for her age but it was not typical language I am afraid.  All this aside, she lost all purposeful language at about 20 months and didn't speak words again until she was about 4.

She was still a happy child. She just liked to be left alone. Before she started to want to be a baby, she was a pretty normal 5th grade girl. Life was fine from K-5th grade. 

School was very nurtured in that she was part of a very fine autism program taught at a public school. The typical peers were included into the program with the children with autism, so my daughter had friends. At the younger ages it seemed cool for the kids to peer tutor one of the 6 autism kids at the school. They were more like little paraprofessionals than friends though. They knew how to talk to her and direct her etc.

She was invited to birthday parties and had friends over. She treated them like everyone else though. Most of the people in her life with the exception of her father and I were college students. They were her friends as much as the kids from school.

We had a very structured home program and had college students work with her in our home and in the community. They were all great with her because Autism was their field of interest, and she was easy to work with so they stayed on for usually more than a year and more like 2 or 3. They had fun with her the way friends do.

After 5th grade her school friends moved on to a different school (a new school opened on the far side of town), and since she was becoming difficult at school, new kids were not the same. They were older, interested in clothes, boys etc., and there just wasn't that connection that there was with the other children.

Steven's 1st Email:
What led to her autism diagnosis? Did she appear especially blank or removed?

Rose's Response:
Yes, like I described above.

Steven's 1st Email:
In her second year (age 1-2), did she bring you objects and tell you the word for them? Asperger's kid's are usually hyperlexic (obsessed with words). In fact, this obsession often stays with them for life, and they are the consummate can label and cereal package readers when no other words are available. Thus, a lack of hyperlexic could mean her original diagnosis was correct. Maybe.

Rose's Response:
No, she didn't do this.

Steven's 1st Email:
Did she engage in pseudo-speach (baby talk; interactively imitate others)? A lack of this would be a factor indicating Asperger's (and Kanner's) as a possibility.

Rose's Response:
Yes, like I described.

Steven's 1st Email:
Has she had any other narrow interests? Asperger's kids usually develop more than one narrow interest over time, sometimes discarding an old one for a new one.

Rose's Response:
This wanting to be a baby is the only thing that has really appeared to be a narrow interest although she has always liked to watch the same movie over and over and listen to the same song over and over, but I don't think that is the same thing is it?

Steven's 1st Email:
Has she ever had a normal peer friendship? Asperger's kids usually gravitate to adults and older folks and fail in and around peers, although they often bypass this difficulty by having friendships with other unusual kids; e.g. the outcasts; the loners; the brainiacs; etc.

Rose's Response:
No, most of her friends have been the college students that work with her. We have tried many many times to foster relationships with other kids but she just doesn't want that. She seems to sabotage any attempt to have her socialize with other children. She doesn't have much in common with 15 and 16 year olds, so we try to pair her with 7, 8, or 9 year olds, and even this doesn't work.

Steven's 1st Email:
Does she correct you when you try to reach her with the truth of her life? Asperger's kids can't stand imprecise information and frequently drive everyone around them crazy with their efforts to correct people. However, "precise" to them means precisely what they see as the truth and is not necessarily any literal truth.

Rose's Response:
Yes, we do try to talk to her with about the truth of her life but the truth and her truth seem to be two different things as you said. When we try to talk to her honestly and tell her why she can't be a baby and how much fun it will be to grow up etc., she will correct us as though only she knows the truth and the truth is that she can remain a baby and not grow up and that it will be ok and fun. She is (as I have said) a very smart girl and it doesn't make any sense to me that she will not understand this fact. That everything that is alive grows, animals, flowers, the trees etc... and even though we really want to, we can not stay small forever.

Steven's 1st Email:
Does she digress into her own interests after pretending to listen to you, as in, does she appear to simply wait her turn to speak and has no interest in you or in what you have to say?

Rose's Response:
No.

Steven's 1st Email:
Has she any physically abnormal habits, e.g. compulsive hand ringing, skin picking, ear lobe pulling, rocking, staring into the air? Does she complain about the textures of her clothes? The volume of sounds or music? The intensity of light or colors?

Rose's Response:
No.

Steven's 1st Email:
Does she read mouths more than eyes? You may have never noticed. Asperger's kids read mouths significantly more than eyes, normal kids, the other way around.

Rose's Response:
No.

Steven's 1st Email:
Do her eyes ever connect to yours when you look at each other? Does she abnormally connect to nature or to pets?

Rose's Response:
Her eyes will connect to mine but she in indifferent to nature or pets.

Steven's 1st Email:
Is she blunt in any way? Does she insult people and not realize she is doing this?

Rose's Response:
Not really, She does say what is on her mind, and it could be insulting, but for the most part, I think she understands what a rude comment is and she is rather polite.

Steven's 1st Email:
Tell me about the time in which she first regressed, 2-3 years ago. Did she experience anything at all traumatic, e.g. the loss of a friend, a pet or relative who died? Her present regression makes her seem much more like a person who has suffered a traumatic event in the time she began to regress. And yes, it is possible that puberty was her trauma.

Rose's Response:
Well, this is where you may be correct with thinking post traumatic stress, because when she was in 5th grade and this all started, her father and I got a divorce. We have remained friends and he lives close by.

I tried to explain things to her and tell her that we are still a family, but we just don't live together anymore. I do not speak badly about her father to her and encourage her to see him on every occasion, but he is an every other weekend dad and that is it. 

He is not really involved in her life since the divorce. I feel like he divorced both of us. I don't know exactly how she was affected by the divorce, but she did seem a lot happier after he moved out. Things were calm and quiet again and the house, furniture car etc., all remained the same.

She did have a lot of weekends at first with crying and saying that she didn't want to go to her dad's house and also said that she didn't like him anymore etc., things that a child might say when this type of thing occurs. I was concerned but it stopped and she seemed ok.

Her father ran his business from a home office and was always at home.  I worked about an hour from home and was working a lot at this time. She was often home with the teachers until late evening when I got home from work, and even though she was always with her teachers in the evening, her dad was always home also.

I worried that she felt she lost her father and her mother and was being raised by college students. I have since arranged my life so that I work part time and only while she is in school. This way, I am at home when ever she is.

We are a very normal family now and unfortunately, there was a time of un structure before getting here. Also, as I mentioned the teachers that work with her in our home are very special girls. They become family while they are with us, and even though they don't live in, they are here a lot and are more like siblings to Carol than teachers.

The problem is that even though there is not a lot of "turn over," they do graduate from college and move on with their lives. We keep in touch but they move on. I don't know if Carol understands that is what they are supposed do or if she just thinks that everyone you love leaves you at some point and nothing is forever. 

I have told her I will never leave her but I wonder if she believes that? She has asked me not to get old and die, so I suppose she knows that I will one day leave her. 

She doesn't have grandparents or aunts and uncles either. Her grandparents in New York stopped being grandparents when we got divorced. She has not seen them since. The only Aunt she has known was my only sister and she passed away suddenly last year.

The only grandmother was my mother and she passed away also last year. Her grandfather passes away 4 years ago. She was very close with all three of them and she was extra special to them. I know she misses them. So as you can see, I am it for her and that is why I must help her to get her life back.

Steven's 1st Email:
What does she say she wants out of life? Use her words exactly if you can. Often parents miss important clues because they reinterpret their child's words.

What I mean is, often, a person's literal words offer the best way into their inner life. Normal folks often adjust these words so as to make sense of them. Unfortunately, this often obscures the only real clues to the person's condition.

Rose's Response:
I know it sounds redundant, but she wants to be a baby. There is no clue to miss. As odd as it seems, she says it and means it, and there is nothing else that she wants.

Steven's 1st Email:
What was she like at 4-5, just before she left for school. Perhaps her entry into school was the real traumatic event? She is, after all, regressing back to what appears to be her "safe space," which seems to be back to about pre-school age.

Rose's Response:
We moved from Florida when she was 5. Prior to that she was a cute happy little girl who was doing the Lovaas program at home and was stimulated every minute. I would say that her life was happy. I would also say that the move was not traumatic either for her, she liked her school (and would love to go back) and life was good.

She is still a very happy compliant child when she is not wanting to be a baby. I do think though while I have been thinking and telling you about our life that I am realizing that she has had some trauma around the time that she first wanted to be a baby and not grow up. She seemed to do just fine, or at least how you would expect but maybe I missed a lot of signs.

It is possible because of her autism she couldn't communicate her feelings. I have been thinking autism and nothing like post traumatic stress.

Please let me know if you still think this is what this could be. I don't know anything about post traumatic stress.

Steven, as I said earlier, you have no idea how much it means to me to have found someone who can "think outside of the box" and possibly help me with Carol. I do think that you have thought of something that I would not have and I am grateful. Please let me know what you think after what I have just told you. Thank you again from me and Carol also.

Rose<

A few days later, I wrote and said ...

Rose, what I'm about to say is not at all meant to be clinical. Even so, parts of what I say may sound this way anyway. Please know it's not meant to be other than warm.

Let's start with that you mention that " It seems if it is a stim, we are part of it." And while I'm not at all expert in Kanner's, if I'm right about the time of onset and nature of the different autisms, a "stim" would be more sensory in nature, whereas in the case of what you're describing, your daughter's reactions seem to be more psychological in nature. This may very well indicate Asperger's rather than Kanner's. More on this in a moment. First, the part about it being a "stim."

Essentially what I'm saying here is this. We Emergence Practitioners process symptoms rather differently than others. Thus, rather than seeing symptoms as simply something we need to cure, we see symptoms as the clues to where the person needs love the most. And as the very things which when used as such, can guide us right to where the person is injured.

In essence then, we believe symptoms describe the actual life script of the original injury and the stage on which it happened. We also see the point at which these repeatedly relived this life scripts end as being the point at which the person got stuck; the "BLock."

In your daughter's case then, while Kanner's Autism clearly originates in the first six months of life, telling someone they do not want to go to day care would more indicate a somewhat older age, second year of life, for instance. In addition, the symptoms you begin to describe indicate a time at which your daughter would have had to be starting to talk. She may have also been going to day care, or to something like day care, pre school or some kind of therapy for instance.

Also, in order for her to have been as oppositional as you describe, she would have had to have been approaching or have been older than age two, twenty months, say. So between age one and a half and age two is my opening guess for the autism onset. And perhaps the later symptoms you mention here indicate that she is reliving a post traumatic stressor from her first or second day of something you took her to and left her at? Therapy or play school perhaps?

You also mention that "when she has a tantrum, she screams, cries, hits people, throws things etc., then after she feels very bad about it." Here, while people with Kanner's autism certainly throw tantrums, they don't usually feel too bad about it afterwards, at least not most times. And with people with Asperger's, it's the opposite.

People with Asperger's can throw tantrums too, but usually do feel bad about it afterwards, although not always. In fact, your daughter's feeling bad about her behavior is actually a good sign. However, in order to better gauge what this sign indicates about her, I would need to know a bit more, specifically, about whom she focuses when she feels bad.

What I'm you asking is, where does she focus her bad feelings, on herself or on someone else? In other words, does she focus on herself and on feeling bad about the consequences she may receive? Or does she focus on whomever she just acted out on and on feeling bad about how she just affected that other person, you for instance?

How can you tell the difference?

The bad news. Discerning this difference can be a bit difficult even for most therapists. They're simply not trained to see these two behaviors as being different let alone to look for them. And a "sorry" doesn't necessarily mean "I'm sorry for hurting you." It can also mean, "I'm sorry I'm about to get punished for what I did."

The good news. You, as her mother, should be able to feel this difference in your gut, the difference between her feeling bad for herself or bad for you.

Let me try to make this a little clearer. What I'm referring to here is the difference between feeling "regret" and feeling "remorse." With "regret," the person blames the event on others. With "remorse," the person blames themselves.

In other words, "regret" is about something bad that happened to you, the acting out person. "Remorse" is about something bad which happened to someone else as a result of how you acted out. And again, please know that saying "I'm sorry" is not a clear indicator of which thing it is.

Thus when a person feels bad about hurting you, this is "remorse" and comes from the fact that they see how what they did to you hurt you. "Regret," then, is more like what children feel at age one or less, or in the initial stages of the "terrible twos." Here, children feel bad for what they did more because they will get punished in some way for what they did, meaning, that they will suffer as a result of what they did.

What makes knowing this difference so important?

People who can only feel "regret" have a very difficult healing. Why? Because they blame others for their life difficulties and see the source of their suffering as being entirely outside themselves. This means whenever they try to change the bad thing, they focus on changing what is outside them and not on what is inside of them. For instance, they may focus on changing the people around them rather than on changing themselves.

On the other hand, people who feel "remorse" have a much better chance to heal their injuries. Why? Because they at least will focus on what they actually can change; on themselves. What I mean by this is that, when people feel remorse, they see the source of the problem as having something to do with them. Thus, they most times are willing to look for the problem inside of themselves, and at how they themselves can change the situation.

In extreme cases then, when people have been so badly injured that they can truly be called, "mentally ill," the difficult time they have healing comes directly from the fact they cannot connect how they live to how they suffer, specifically, how they behave to how their suffering affects others, what I call the "interpersonal suffering." This means when mentally ill people experience life, they experience it only as far as it affects them. Thus they learn only from life's consequences and not from how they hurt others.

Conversely, when people have serious symptoms but are not truly mentally ill, they can experience the "interpersonal suffering," albeit often only under ideal circumstances. Even so, these people have a much better chance of healing as they can actually learn from both their consequences and from how these consequences affect others.

To sum it up, when people experience "regret," they are mostly being affected by how the event hurts them. More over, because "consequences" are an external motive, they see both the source of their problems and the source of the solutions as being external.

When people experience "remorse" however, they are mostly being affected by how their life and behavior has hurt someone else. This means they focus inward when they look for the source of the problem, and in doing so, focus on the one place they actually have a chance to change; on themselves.

Finally, the point of all this is to tell you that knowing whether your daughter feels remorse, regret, or both would make a great difference in how you try to help her. If she only feels regret, then you would mostly use behavioral interventions; not my favorite method as there is not much hope for true internal healing. On the other hand, if she feels remorse then you may be able to use her "remorseful feelings" to help her to learn to see her mistakes, given, of course, that you do this very judiciously.

In addition, if she has both kinds of feelings, then the order in which they appear would be the guiding factor. "Regret then remorse" means she will be personally unreachable until she shifts into remorse. Thus, the focus would be on getting this to shift inside her and then on using her remorse to help her to learn from her mistakes. On the other hand, if she has "remorse then regret," then you would have a good chance of reaching her, right at the start, through getting her to see how her behavior is hurting others.

As far as your thoughts about some of her behaviors being OCD, I'd set this label aside for now, as trying to label every behavior quickly gets you lost. How? All too quickly, we human beings see these labels as more the focus than the person's suffering. More over, the minute we cease to see the person's suffering as the focus, we lose our ability to help the person because we focus mostly on getting rid of the symptoms.

If symptoms were the actual wound, this would be fine. But since symptoms are really just the clues to the actual wound, then getting rid of them only makes finding the person's wound harder.

As for how you describe her growing up, to be honest, here again, I hear much to indicate she is actually closer to having Asperger's than Kanner's. What specifically?

Clearly your daughter appeared normal prior to age one and a half and could interact with others normally; not a sign of Kanner's autism at all. In fact, this alone could be enough to change the diagnosis for many supposedly Autistic people. And the treatment.

Why would so many people have an incorrect diagnosis? Realize Asperger's is barely a decade old diagnosis, while Kanner's is more than five decades old. And while both are in the Autism Spectrum, they are clearly very different conditions. And need different interventions.

You then mention that around 18 months, you daughter changed, and from your description, very definitely became hyperlexic. Hyperlexia means the person becomes obsessed with learning to imitate words and language.

Your daughter's obsession with imitating the speech of the Sesame Street characters and peoples' accents clearly points to this, along with her withdrawal from you. Her need to correctly imitate what she heard is a second indicator.

Then, when you say she lost all her own language, I take this to mean she lost her own voice and became focused only on imitating the language of others. Here, she clearly became more and more obsessed with learning the fine details of the way others spoke, as if these details were the absolute measure of how correctly she herself spoke.

Ultimately then, she seems to have done this to the point wherein she began to lose her sense of herself as a speaker completely. Perhaps here, she became so uncomfortable, and so unsure of how correctly she herself spoke, that she turned entirely to listening to others in an effort to be sure she was doing it right.

Then you say that from about age 20 months to about age 4, she stopped speaking. Here again, this indicates Asperger's rather than Kanner's, and I have personally worked with or know of a number of Asperger's people who during this time lost their ability to speak. This includes me.

Next you describe very clearly that she did not have peer aged friends and had a preference for older people, the teen aged college students for instance. Again, this is an Asperger's symptom and not a Kanner's symptom.

Then, if I read you right, you mention that she did not bring you objects and tell you the word for them. Here again, this would be yet another symptom of Asperger's and in fact, is what I myself call a lack of one of the aspects of pseudo-speech (a lack of baby talk being another).

What I mean is, normal kids love learning to mimic people talking (pitch, rhythm, facial expressions, eyes), even before they can speak words. They do this in efforts to connect to other people.

Asperger's kids, on the other hand, love learning words for learning's sake only, and not as a means for conversation. Thus they rarely spend much time imitating how other people look when they speak other than to imitate the words spoken.

Then you mention that indeed, she does correct you about the nature of her life. Here again, this is another symptom of Asperger's, a big one in fact. Kanner's kids tend more to resist than to correct. Asperger's kids tend more to correct than to resist, although people frequently mislabel Asperger's kid's correcting as resistance. It is resistance. However, it's more that they are trying to make others do or say things correctly than that they are resisting what others want them to do.

You also say your daughter does not have the typical Kanner's problems with sensations, e.g. hating rough textures or intermittently experiencing sounds as too loud. And if you want a good sample of how these and the other symptoms of Kanner's look, you might read something by Temple Grandin, "Thinking in Pictures" for instance.

Finally, you say your daughter is polite. This too can be an Asperger's trait, especially when seen along with all the rest of the symptoms you've described. Kanner's people are blunt to a fault, caring little about the feelings of others, whereas while Asperger's people are blunt at times, it's more about how insensitive they are to what it feels like to be corrected rather than that they don't care how people feel. This is similar to how blind people are.

In other words, Kanner's people are blunt and don't care much for how this bluntness affects others, whereas while Asperger's people do tend to be blunt when they correct others, in general, they also care about how other people feel, many times, very much so.

Finally, as for the possibility of PTSD, at the very least, your daughter has some very serious injuries in and around people leaving her. Certainly this has been a theme in her early years. More likely, the divorce is the serious PTSD factor, especially when seen along with the timing of her regression.

So, with all this said, what can you try differently?

First, let me remind you, I am speaking only as a father and human being rather than as a professional. Even so, my thoughts right now are on my wondering how her life might have been different had she been getting diagnosed today. How did her being treated as having Kanner's Autism and not Asperger's affect her ability to heal?

This aside, I would urge you to consider seeking out a professional who is informed and experienced with both Asperger's and grief work, especially someone who has serious experience with fantasy regressions. See how this person sees your daughter's condition.

Finally, know that throughout our discussions, I've felt both blessed and cursed. I feel so fortunate to have discovered such an accessible way to understand the autisms, especially in discerning Asperger's. At the same time, I feel so helpless in my ability to point people like you in a meaningful direction as far as how to help.

What I can say is this. Your daughter's number one problem is her regression. In fact, I see this regression as the outer barrier to your daughter's healing. Thick and tough but penetrable if you don't give up.

I then see her hyperlexia (and Asperger's) as being the core of her problems. Get her to learn to love the non verbal parts of conversation and she'll really bloom.

Rose, I see these two symptoms as the key to the whole puzzle. Add to these two things that she [1] needs someone to help her to see how correcting others feels to them and [2] that learning to speak the way normal folks speak is the key to getting what she wants in life, and you'll have a pretty good start on what your daughter needs.

As always, should you have any questions, please do write again. And I so hope that in some way I've helped.

Please write again.

Steven

On 3/27 Rose wrote back ...

Thank you so much for your last detailed reply. I have been thinking about all the points that you made since I received it. You are truly a gifted person Steven. I believe that you do see a true picture of my daughter from the limited information I have given you.

Myself and the other people in our life all agree that what she feels is regret and not remorse at all. Each time there was an opportunity in the last few days, we would ask her why she felt bad after she had done something oppositional. Each time she would indicate that she was sorry because of the consequence of her behavior. Not sorry as you had mentioned in a remorseful way because the action hurt someone else, but in a very matter of fact way that there was a negative consequence for her because of it. You had said that this would make it more difficult to get through to her and I can fully understand that.

The plan that I have is that we will get a functional analysis from a behavior analyst, and with that guidance put together a plan for a behavioral intervention.  I do think the correct behavioral intervention should work, especially since loosing a motivator for her action seems to at least be the regret that she is sorry about. Hopefully she will shift and understand how her actions affect others and begin feeling some remorse. That shift would make it so much easier to get through to her and hopefully we can get there. I do agree that her number one problem is her regression and  I will look for a therapist who understands and has experience with fantasy regressions. EVERYTHING you said about that made total sense. She has gone back to that time for a reason and we must discover why before we can help her.

I agree that she has more symptoms of Asperger's than Autism and that has been a bit of an eye opener. Knowing that will probably allow me to help her better also. I am excited to read and learn more about that so I can better understand what may be going on in her head. I may have missed the mark by only reading and learning about autism.

I would love nothing more than to help her, and you have gotten me to "think outside the box" in looking for a direction. I can not thank you enough for that.

Sincerely,

Rose

My Closing Thoughts

Rose's letter has provoked a whole lot of feelings in me as far as how getting children diagnosed correctly affects their whole lives. Sadly, at this point, we are still far from having a comprehensive manner in which to diagnose, especially for children.

What would help?

To begin with, we need to stop focusing on symptoms as the illness and see that symptoms are only the indicators of illness, when and if they can even be seen.

Second, we need to see that if symptoms are not the illness, then relieving symptoms is not necessarily healing, although in some cases, this absence may indeed be a sign of healing.

So what is the illness? And what is healing?

To start with, we need to better define what the actual wound is. What is it? The "wound" is what you can not see"; the missing piece; the blankness present on a person's screen of the mind. Even here though, unless you have been trained in Emergence Therapy, saying these things to you will mean little to nothing.

So what can be done?

Hopefully, in the near future, we will be able to offer a better way to diagnose illness. To be honest, at best, this would take a long time. Even so, we hope that our initial efforts regarding the autisms may be a start. A very brief start. But a start none the less.

Finally, should anyone reading this have thoughts or experiences to share, please do write. We humans only grow through connecting to similar others.

In this, I remain open. And hopeful.

Steven



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