perseveration - a personal journey
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Introducing Perseveration.Most of you who are reading this will know how much those with FASD struggle to understand their environment and what is happening to them, and how they are overwhelmed by situations that others can cope with routinely.We need to ask ourselves-‐ how can a person survive when he or she is repeatedly faced with such situations that are impossible for them to reconcile?
Bill was 22 when I First saw him. Gaunt with metal hanging from his nose and ears. He was dressed completely in black. At that time I was only just starting to recognize FASD consequently I treated him in the traditional way for his depression and drug addiction.With his history and observing him over a period of nine months however, it became apparent that FASD was the likely cause of his disabilities and chaotic life. FAS had been mentioned in the past but not pursued.He had experienced the secondary disabilities of disrupted schooling, drug and alcohol problems, inability to live independently, inability to maintain employment and incarceration. In addition he had been treated for ADD and depression.It was apparent that he had sensory, cognitive and information processing disabilities although, as usual, a psychological assessment was not available.Eventually, after some years, the diagnosis was conFirmed.
In listening to those with FASD it is important to try and not interpret what they say from the view of our own values. Rather our interpretation should be made in the light of the individual’s disabilities.
Bill’s mother accompanied him on his third visit and a more detailed history was obtained. She was small and slight besides Bill , very concerned but weary from the chaos of the preceding eighteen
years.Bill was adopted at age four after being removed from his parents at the age of two.. The reasons for his removal were neglect and the alcohol abuse by his birth parents. As usual, the CAS records did not indicate whether alcohol had been consumed during the pregnancy.His parents had supported him but at this time, with welfare, he was managing on his own living in an apartment in a near by city, but exposed to the drugs he wanted to quit.Issues that were actually commented on by Bill and supported the diagnosis of FASDwere -‐-‐hygiene-‐ “unless directed continuously”-‐ self cutting, seen as attention seeking by others but correctly described by Bill as “helping him be aware of his body”.Cutting provides comfort for those with FASD, especially in times of stress, that others obtain from more normal sensory stimulation.-‐ maintaining employment Bill stated that “he could not maintain employment because he would forget and needed supervision.” In spite of what society may think, those with FASD want to work.-‐He indicated “that he never learned from his mistakes.” This was his repetition of what he had been told-‐ as we shall see it is a matter of how we interpret the word “learn”
-‐sleep -‐ “can’t get to sleep, my mind is like a computer rebooting”-‐ anger and depression-‐”can’t understand it, don’t like it-‐ happens when I focus on negative thoughts”These last two comments by Bill were to assume great signiFicance as I journeyed along the path of understanding.
It was their eighteenth visit. Bill was visibly angry. His mother looked tired, and resigned to Bill’s explosive outburst. -‐“It’s always the same. She never supports me. She’s always controlling, wants’ me to depend on her. She is always negative about what I do.”
Those with FASD move from the speciFic to the general in this way, to the distress of others. Yet, at other times they will not be able to apply a general rule from their speciFic behaviour.
So I asked Bill to explain the problem. He had obtained a job but his mother was negative about it and not encouraging him.It sounded great to me, so why was his mother being negative about it?“We have been through this many times. Bill has not told Welfare that he has a job. If Welfare or his employer Find out he will be Fired. When that happens we will have to start providing him with money for his rent again.”I pointed out to Bill that what his mother was saying was correct, and he agreed but immediately said.-‐ “ But I don’t want to depend on her. She does not understand. I don’t want to keep taking her money. That’s why I need the job”.He said it with such emphasis that it resonated in the back of my mind, especially as it was not logical to me with my manner of thinking. I realized that Bill’s emphatic focus was related in some way to his not acting on the point his mother had made. Yet I did not understand.
Two weeks later they returned. Bill’s demeanor was so different. His head was down, his voice quiet. His mother looked even more withdrawn and resigned.-‐ “ Everything turned out as I said. His employer found out that he was on Welfare and Fired him. Now we are paying his rent again and supporting him”.I turned to Bill and gently pointed out that we had discussed the consequences of not disclosing that he was on Welfare on the previous visit. -‐“Yes I know but I don’t want to depend on her” This time it came out not with anger but like the echo of a deep conviction. It stayed with me, a lingering phrase that I knew was
important, but why?It kept coming back to me, each time a little clearer but so different to my own experience.What Bill wanted was appropriate so why would he jeopardize his goal by not declaring he was on welfare? Many reasons came to my mind but none of them were mentioned by Bill. Was it possible that he was so stuck on his goal that he could not deviate from his plan, i.e. working at the job, by considering and taking into account what his mother had said? Possibly, but even when he could acknowledge later the truth of what she had said?It is at this point that it was necessary to remove myself from my mind-‐set and accept the facts as Bill had presented them.If Bill had not been able to take what he later acknowledged to be true and modify his intent and behavior then there could only be one explanation. He was so focused on his need to be independent of his mother that he could not take the knowledge that she offered him into consideration at that time. Later he could acknowledge it, when he was no longer so focused on the job.Could I relate to this in my own experience? Yes there were times when I was so focused that I would miss input from others etc. Could it be possible that this was always the case for Bill?With this question in mind I started to look at those with FASD with a different perspective. It started to explain so much.Eventually I came up with a story to use in presentations on FASD. I called it the Hot Dog Story-‐ a composite of all the examples told to me by those with FASD.
A family has a teenage son. He has caused them a lot of grief -‐ skipping school, staying out late, running with the wrong crowd, petty theft, lying and so on. His parents have not given up on him but they are increasingly frustrated and angry.One day the boy asks if he can go down town to a show. His father gives him the money for the show and for his fare to and from downtown. The father says-‐
-‐“That’s all there is and come straight home”The boy replies-‐-‐”I know, you don’t have to keep telling me. I’m not stupid”Later, after they have gone to bed, the telephone rings.The father answers the telephone. It is their son.-‐”What do you want?”The boy replies.-‐“I need a ride home.”Father.-‐”Why do you need a ride home?”Boy.-‐“I have no money”-‐Father.-‐“What do you mean you have no money? What have you done with it?”
Boy-‐“ I bought a hot dog.”His father goes berserk.-‐“You bought a hot dog and now you expect me to drive down and bring you home. You are selFish...” He goes on and on.
Never the less he gets dressed and drives down town. He does so because from experience he knows his son will likely get into trouble if he is left to make his own way home.The next day the father asks his son.-‐”Why did you do that?”The boy replies.-‐“I don’t know”
The explanation is -‐ when the boy came out of the show he was hungry. He sees the hot dog stand. He sees and smells the hot dogs.At that moment, super focused on the hot dog, he was not able to take the knowledge that he had and apply it to change his intent. So he spends his money on the hot dog. The next day when asked why he did this he does not know. After all he is not stupid and he knew
before he went to the show, and after returning, that he only had enough money for his fare home. So his answer is.-‐”I don’t know”.
At this point I had taken a big stride to understanding FASD.Those with FASD, when they are perseverating on something, are not able to take the knowledge that they have and apply it in the moment in anticipation of what might or might not happen in the future. They forget to remember. They are prisoners of the moment.Surely this is the only way they can deal with situations that are impossible for them to reconcile.
To appreciate the perseveration of those with FASD think of a moment when you were brieFly not able to think of anything but the topic of the moment. It could be a moment of danger and fear, of intense concentration as in an examination or of great joy as at the birth of a daughter or son. Such moments would be infrequent.For those with FASD they are the norm.
Perseveration appears to be universal for those with FASD. This does not mean that all those who demonstrate perseveration have FASD.In the non FASD world perseverating behavior is seen as both good and bad. It occurs in combination with the sensory, cognitive and information disabilities of FASD.
One important connection is its role in ADHD which is the most common secondary diagnosis for children with FASD. Children diagnosed with ADHD are prescribed medications such as Ritalin that increase focusing and attention.How will that inFluence perseveration in children who have FASD?We can expect it will increase the perseveration and usually this is the case in my experience. I say “usually” because there are always exceptions to the rule with FASD. It follows that such medications can be expected to have both
positive and negative results depending on what the child is perseverating on.
Some of those with FASD perseverate on suicide. There is a signiFicant risk of suicide and suicide attempts.The role of Ritalin type medications in these cases has not been explored, as far as I know. All children with FASD should be carefully monitored for such thoughts before prescribing Ritalin etc. Close monitoring should be continued once the medications are prescribed. So often this is not done. We do know that there is a connection between ADHD, Ritalin and suicide. The problem is that those who diagnose ADHD usually ignore the role of FASD and its consequences.We also know that sudden death on Ritalin etc is a risk for those with ADHD.Cardiac abnormalities occur in some cases of FASD. Such cases could be at increased risk if prescribed these medications for ADHD.What this means is that FASD should always be excluded before diagnosing and treating ADHD and children diagnosed with FASD should be assessed for cardiac abnormalities. This is rarely done.
Positive Perseveration-‐I was visiting an inner city drop in centre for street children and youths.Helping out was a young man who told me he had FAS. He had left a neglectful and abusive home when a child, to live on the streets. He had been involved with the sex trade, drugs, violence and most other criminal activities as he was growing up.Eventually he started to realize that those he associated with either died or ended up in jail. At the same time he had found the drop in center; a place were he could get a hot meal and see that there were other ways of surviving.He told me that he realized if he was to avoid the fate of his friends
he would have to completely avoid them, the places they frequented and the drugs they used.This he achieved on his own, although the fact that he had the drop in center and the new friends it provided was of great help.However, as I said to him, those with FASD are not supposed to be able to learn from experience in this way. That was the point I was at on my journey of understanding.
After exploring this with him it became apparent he was only able to achieve this by perseverating on the consequences of his previous life style. “I think about it all the time”-‐ he said.What an effort and, although so positive, how much it must have limited his ability to consider his other everyday needs. I only met him the one time. I hope he was able to continue on his path. In my subsequent experience I realized that ongoing support is required to enable those with FASD to continue perseverating to obtain such positive results.
We look for, and see, what we know. Once I understood positive perseveration I found other examples. The focus of positive perseveration mostly relates to family relationships and keeping out of jail.B.. was in his early thirties. He was divorced but was actively involved in the daily care of his two children. As a young man he had a number of convictions for theft and had spent time in jail. His time in jail had been a bad experience for him.I asked him if he ever thought of stealing. He replied “often, but I wouldn’t do it”“Why “ I asked.“If I stole again I would only end up in jail and wouldn’t see my kids, and I never want to go back there anyway”So I followed with the question. “How much do you think that if you were to steal something you would go to jail and not be able to see
your children?“All the time” was the answer; his very words. This was an answer that I was to hear again and again.Up until I last saw him he was continuing his involvement with his children. He had the support of his family, which I came to realize was so necessary.
Sadly such positive perseveration is usually too difFicult to maintain when support is lost.F.. had a similar story but more severe than Bs’He had been through all the secondary disabilities of FASD. When he First came to see me he was married with a young child and had a steady job. He was not drinking or using drugs.He had been able to change his life around by perseverating on the fact that any return to his previous life style would result in the breakup of his marriage and the loss of his child. This was a huge and continuous effort on his part.No doubt this effort itself, together with his other disabilities, made life extremely difFicult for his wife. She eventually left with their child. Although she was supportive as much as she could be under the circumstances he started to drink again to deal with the resulting chaos in his mind. Unlike B.. he did not have other family members to support him.
It is instructive to look at these two examples of positive perseveration from society’s usual perspective.In both cases the great and continuous effort required would not be appreciated.In the First case B.. would be seen as someone who had learned his lesson and made up for his past delinquencies.In the second case F.. would be seen as someone who did not appreciate what he had, was selFish and had put his own needs before those of his wife and child.
Temporary positive perseveration-‐A year or so later I had a referral that jolted me forward.E.. was a teenager referred by a psychiatrist. This was unusual since FASD is rarely considered in Psychiatry.She was a resident of a youth detentions centre and had been referred for the possible diagnosis of FASD.Both her parents had been alcohol abusers. She had a long history of violence. Finally she had been detained for treatment of her violent behavior.She had the history of secondary disabilities, interrupted schooling, drug and alcohol abuse and incarceration.She has shackles on which her worker would not remove. At First E.. refused to speak to me so I asked the worker about E..s’ background.E.. had been incarcerated because of her repeated violence to others, usually when under the inFluence of alcohol.“She is a model client” said the worker. “She has had only one violent episode. That was when she First came. She is cooperative and is attending school. We are so proud of her”.Eventually E.. became engaged in our conversation.I asked about the violent incident.“She pissed me off so I smashed her in the face”.“So what happened then?” I asked. “They left me in a black room. There were no lights or windows, no one to talk to. There was nothing to do. I hated it.”“Have you thought about hitting any one since then? I asked.“Lots of times” she answered.“Oh please, don’t listen to her. She is not like that” the worker said, obviously upset.“If you have thought about hitting people lots of times why haven’t you done so? I asked.“If I did that they would put me back in the black room. I don’t want that” she replied.The next question was “how much do you think that if you hit someone you will be put back in the black room?.
“ All the time” was her answerI do not know what happened to E.. after this visit. She never returned.My report stated that she likely had FASD but this would have to be conFirmed with psychological testing according to our Canadian Guidelines for the diagnosis of FASD.I would like to believe that after her discharge she would have returned home reformed and able to follow a happier and fulFilling life. I think it more likely however that once she returned home her perseveration on the black room would cease and the next time she appeared in front of a judge on charges of assault he would say ” young lady you have shown that when you want to you can improve your behaviour. Obviously you have not learned your lesson yet” Then he would incarcerate her for a longer period and the cycle would be repeated.I can understand that some would criticize me for including the story of E.. in this book since no actual diagnosis of FASD was made, as far as I know. However her history was supportive of the diagnosis and more importantly I was to Find many other examples of temporary positive perseveration once I started to look.
C.. was sixteen. He had signiFicant cognitive disabilities but had not had psychological testing or a school individual education plan [ I.E.P. ] when I First saw him. This had resulted in loss of motivation and interest in schooling, which he skipped.With a deterioration in his behavior, seen as oppositional and deFiant, his mother sought help. By this time we had made the diagnosis of FASD [ ARND ] but it had made no signiFicant impact on his schooling. This was because of his attitude due to the late age of diagnosis, and the inability of the teachers to adapt to his needs.C… was placed in a residential group home with the aim of correcting his antisocial and disruptive behavior.He continued to behave in the same way refusing to go to school etc. Loss of privileges etc had no affect.
In spite of all the problems at home he missed his family very much.I suggested that his mother explain to him that he needed to think continuously that if he did exactly what he was told he would be able to return home. Fortunately he was able to do this. It worked dramatically and he was home within a few weeks.The group home was of the opinion that their therapy had changed him.In fact after returning home he reverted to his previous behavior. The situation did improve somewhat when the school was Finally persuaded to address his learning disabilities.
A more dramatic example was A…. He was 23 years old when I First saw him. A… had been adopted at birth. The diagnosis of FAS had been mentioned once in a report when he was 14 years old but had not been pursued.At the time of his First visit he was living in a youth hostel. A worker from the hostel had brought him regarding the possible diagnosis of FASD.The diagnosis was eventually made. His family were able to provide me with all his records.He had cognitive, information processing and memory disabilities. At an early age he had demonstrated the secondary disabilities of disrupted schooling, inappropriate sexual behavior, trouble with the law, incarceration. These were followed later, as an adult, with inability to live independently and maintain employment.He had been managed or treated by twelve agencies / organizations including two psychological assessments and two psychiatric assessments prior to me seeing him.Previous diagnoses were ADHD, Oppositional DeFiant Disorder, Transvestitic Fetishism with Gender Dysphoria and Learning Disabilities.
On one visit I said to A… , pointing to his thick chart.
“ All these treatments, places you stayed in, and here you are seeing me for similar problems.”“Yes”, he said cheerfully. Not much helped. “I did the best at -‐-‐-‐-‐-‐-‐-‐-‐-‐“. He referred to a well known treatment center for children.“What do you mean”? I asked.“Well I caused problems for a while and then they put me in the Bubble”“What was that?“It was a dark room with no lights, nothing to do and no one to talk to.”It had obviously been a bad experience for him.“After that I did what they told me to do.”“How much did you think that if you did not do what you were told you could end up back in the Bubble” I asked.“All the time” was his reply. His exact words.No doubt the treatment center considered A… a success. There was no indication in the Files from the center of any follow up, and no mention of the “Bubble”
What is the primary purpose of our brain? From the simple nervous system of the worm to the complex human, the brain receives information from the environment. It then provides the means for the recipient to respond in a way that is conducive to the survival and propagation of its DNA.Because the behaviour of those with FASD is so self harmful and counterproductive we assume that their brain is not following this primary and fundamental path.This assumption is a serious impediment to our understanding of FASD.In fact those exposed to prenatal alcohol work hard to interpret their environment. The greater the developmental disabilities of their brain the harder they work, with the means they have. They are, as we all are, continuously attempting to make sense of what is
happening to them. We have to interpret their behavior and ideas in this context. We will never make progress without understanding this principle.The fact that the results of their efforts to understand, with consequent inappropriate behavior, are in conFlict with our more accurate assessment of reality must not allow us to dismiss what those with FASD have to say.We need to listen, listen, listen…..
Now we can understand why making the diagnosis in early childhood, and being exposed to a positive environment can reduce the incidence of secondary disabilities. Nevertheless, even with such ideal FASD circumstances it is a continuous struggle for the individual to navigate the intricacies of everyday life, striving to live the values they grew up with.
Therapeutic Perseveration-‐Being bored-‐ Khaos [ Greek-‐ bottomless, void, primeval chaos, abode of evil spirits, hell ]
We must not assume that when a person with FASD uses a word that it has the same meaning as it has for us. They will repeat what they have been told over the years, including our descriptions and interpretations of their behavior.
Since they have been told they are bored when they are in a state of Khaos, inevitably they will come to believe the two are the same.This process has signiFicance in all areas of interaction, none no more important or tragic than our legal system. So, for example, a person with FASD may describe their desperate attempt to Find relief as “seeking attention” because that is what they have been told so many times.
Only two years before retiring, having lived with FASD for 34 years and seeing those with FASD in my ofFices daily for 10 years I made a huge leap forward in my understanding of FASD. It came once more from listening to words spoken and not interpreting them from my self -‐ perspective; to have taken so long!I could not count the number of times “being bored” was complained of by those with FASD. I assumed that the meaning of “bored” was the same for them as for me. For me it merely meant having nothing to do and quickly moving on. It was never an issue and not unpleasant. Now, looking back, I wonder how I could have been so foolish.
N.. was 19 years old when she First came to see me. She had been diagnosed at the age of Five and had been adopted and raised in an ideal rural setting with an understanding family.The event that caused them to see me was an unexpected and out of character disappearance for a weekend. N. had been persuaded to visit a male, contacted on the internet. Fortunately she was quickly located and returned home by the police.N. was still at high school. She had an I.E.P. but was many credits behind as she had signiFicant disabilities, in great contrast to her mature, attractive appearance.Expectations were explored and adjusted. The daily manifestations of N’s disabilities were reviewed in the context of “stealing’, “lying” and inappropriate communications over the internet.The family understood that N would always require care and supervision. This was a concept that N. struggled with, a frequent scenario with FASD.
It was on their twelfth visit. N’s mother said “as usual, she spends all her time playing video
games”Immediately N said, “ I do that when I’m bored”.
I think it was her attitude, not stated – of course, what else would I do? What’s your problem.-‐ that indicated an underlying assumption on her part that we understood the reason why she did this when bored. I realized, for the First time, that actually I did not understand why she played video games continuously when bored.So I asked her “what is being bored like?”Her answer was a revelation.
‘When I’m bored I have lots of thoughts in my head. It is uncomfortable. I don’t like it. So I play video games and it all goes away” She was never able to tell me what the thoughts were. She did make it clear that she had no control over them and the process was not nice. They were associated with uncontrolled changes in feeling good / bad.
So I started to ask. In doing so it was important not to ask leading questions, to be unambiguous and to listen.Here are some examples of being “bored” [Khaos]. In some cases they were from people who I had been seeing for years, and I had had no idea of their true state of mind, i.e. Khaos
“ -‐ a thousand tvs all playing at the same time”“ -‐ hundreds of radios playing at the same time”“ – beehive full of bees buzzing around in my head”
Since they have always been told that they are bored when in fact they are in a state of Khaos, inevitably they will come to believe the two are the same.They describe different ways of controlling Khaos, but they all have
one thing in common, it is a process of perseveration.What those with FASD perseverate on for relief of their chaotic [bored] mind is extremely variable. It is determined by the environment that they grew up in, with its values and behaviors, and positive and negative experiences.
[We all have core values and behaviors that are laid down in the First few years of life. In the case of FASD those core values and behaviors are essentially set in stone. If they are negative those with FASD are more prone to secondary disabilities.]
Understandably, the cognitive, information and memory deFicits of the individual will also determine what they do for relief. In some cases they may read, play sports or music; all seen as very positive, if not obsessive.For those with more serious neurological disabilities simple forms of relief are used; many parents are familiar with the intense texting and video game playing of their children, and how aggressive or violent they are when this activity is taken from them. We need to ask ourselves how we would react if we suffered from violent migraines and had our pain medications taken from us with no other means of relief, we might then have some understanding of the role perseveration plays in the relief of Khaos.
FASD often includes serious disturbances of sensation.They may have very high or very low thresholds of sensation.One or more of the Five senses can be affected. Depending on the situation these disabilities may be comfortable or uncomfortable for the person with FASD. I will discuss this later in more detail.In terms of Therapeutic Perseveration one of the most dramatic and paradoxical examples is self mutilation. Cutting is in fact a process of therapeutic perseveration for the relief of Khaos. For those who have not made the paradigm shift of understanding
the use of the word “therapeutic” may seem inappropriate, if not fallacious. However since self-‐cutting brings relief of Khaos it is to that extent therapeutic. Of course we should help those who use self – mutilation Find other more desirable means to relieve their Khaos.
I have never met a person with FASD who liked to show off their scars from self-‐mutilation. On the contrary they prefer to hide them; in contrast to someone who is seeking attentionJ__ was 32. He lived alone having had a number of failed relationships. He was very intelligent but led a chaotic life, always in conFlict. He came from a middle class family and dressed accordingly with a suit and tie, no matter the weather. I commented on this one particularly hot August day.“ I always wear a tie and long sleeve shirts he said, and never wear shorts.”“Why is that I asked” without giving it much thought. “Because of all the scars” he answered. So obvious once he said it. We had discussed his cutting in the past. This was the First time he showed me; a brief exposure that showed a keliod scar.Attention seeking and anger directed at self are two of a number of explanations given for this behavior by those who do not recognize or understand FASD, but in fact it is one of many ways they seek relief from their Khaos, and certainly it is a process of perseveration, enhanced by a tactile disability.
Criminal activity can certainly be a way of relieving Khaos.Part of this is the “excitement” of criminal activity. One adult would repeatedly break and enter. He told the law that he did it whenever he was bored. One doesn’t need a great imagination to see how that was interpreted; gratifying his pleasure centers. In fact, in moments of Khaos, his B an Es were a process of relief.
I have many times asked “ If you were placed in a dark room, no
windows, no sound, no one to talk to, nothing to listen to or play with, nothing to do-‐ what would happen?”The answers are always similar. “ I would go mad or I would kill myself.Yet solitary conFinement is still practiced in our prison systems, and we know many inmates have FASD.
***************************************************************Ashley SmithBorn-‐ New Brunswick, 29th. January, 1998.Died-‐ alone, in isolation-‐ Grand Valley Institution for Women, Kitchener, Ontario, Canada. 19th. October, 2007.
The Ashley Smith Report, New Brunswick Ombudsman and Child and Youth Advocate, June 2008
My life I no longer loveI’d rather be set free above
Get it over with while the time is rightLate some rainy nightTurn black as the night and cold as the seaSay goodbye to AshleyMiss me but don’t be sadI’m free, where I want to beNo more caged up AshleyWishing I were freeFree like a bird
.
“She [Ashley Smith] had indicated to the staff that she was bored and was looking for attention and she wanted staff to enter into her cell so that she could Fight with them”-‐ Ms. Grafton, Security Intelligence OfFicer, Grand Valley Institution for Women, Kitchener, Ontario, Canada.
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Barry StanleyDecember, 2013
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