FASD and "manipulative" behavior

[michellea]

Hi All,
I have a new 16 year old client with probable FASD (adopted at 2 weeks from a drug addict). Until he hit late middle school, he was always a strong student but behaviorally was more difficult than most (poor EF, poor emotional regulation, non compliant etc). Now that he is in HS his problematic behaviors have escalated at home (outbursts and rages at home, disrespect, lack of empathy, extremely ego-centrinc) and his grades have plummeted and he does not turn in assignments, avoids homework, refuses to go for extra help and does not want ot go to learning center or utilize in class support. Recently he was tested and has poor working memory, high average verbal reasoning, average perceptual reasoning and processing speed. Academically he scored in the average to high average range in all measures of reading, average for all measures of math and below average for written expression - especially tests utilizing longer writing samples. The diagnosis is adhd, EF and NVLD. To complicate things further, he is African American in a very white, affluent school district. (parents are white) I suspect there are issues around this that stay just below the surface but affect teachers expectations and opinions. He is social and has a group of friends and one or two extra curricular interests. But, his relationships often lack reciprocity. He is extremely forgetful and claims to forget conversations, discussions and commitments he has made a day later.

At school he holds it together, and is not disrespectful or overtly non-compliant - but he will not follow through on requests. His mom (special educator herself with an older brother with significant mental health and physical disabilities so she is pretty well educated - but very tired and beaten up) considers this passive aggressive or manipulative. I feel that it might be something else.

Could this kind of behavior be an outcome of the EF and learning disabilities? Even more so, wouldn't this be typical with FASD - the lack of follow through etc? What resources are there to help me understand what supports to put in place to help him? The family has what seems to be a solid team of medical and social service professionals and they are open to new perspectives and information.

My concern is that the school will push him through to graduate asap so they can wipe their hands of the problem. I'd like to zero in on the most important aspects of his IEP so that he can get the most of these last two years. He would like to attend college and become a military officer.

[healthy11]

I'm sure Empeg1 will add more information about FASD, but your description of this boy could've matched my son's attitude and behaviors in early high school. My son doesn't have FASD, but he does have ADHD, EF, and LDs. In any case, since FASD is more likely in your client's case, you could suggest the parents look at www.fascets.org/

[michellea]

Healthy - his behaviors and troubles are similar to many clients I have with NVLD or even very high functioning autism - but much more intense. His "forgetfulness" is also more concerning. Most folks with adhd or executive functioning difficulties will only hear parts of some conversations and miss important details. He will forget entire conversations - for example he discussed getting and working with a tutor during one of his therapy sessions. He was in agreement. The next day, when his mom mentioned it, he claimed he did not remember discussing a tutor and went totally ballistic.

[kewpie]

How is his short term memory? has it been measured? Is it possible he may have small seizures that may affect his memory? It sounds like it may be time for some meds just to help him regulate his emotions.
Frequently people with ASD, LDs and/or EF issues can be really inflexible and unreasonable. It sounds like this kids is overwhelmed and over-stimulated which escalates is behaviors. Would it be possible to put him in a smaller school or class?

[michellea]

Thanks Kewpie - good insight. YES, his memory is very poor. His mom sees this on a day to day functional level and test results also indicate poor working memory, short term memory, auditory memory. I had not thought of seizures, but I have another client with seizures and you are right - this can cause havoc. The evaluators have recommended smaller schools, but the parents and student are not interested. He is a Junior and wants to graduate with his friends. While I understand the importance and benefits of being in one's community school (my son was outplaced), I also realize the importance of the correct setting. I believe this student would benefit from a smaller, less stressful environment that is highly structured, predictable, and offers interventions for academics and behavior. AND there are such schools within a reasonable drive that are state approved.

I have a call with his pediatrician - I'll raise the issue of seizures with the mom and perhaps with the doctor.

[empeg1]

Wait! Wait! This is Empeg.

If this young man has a FASD medication must be considered very very carefully, hopefully, with a doc who has read something about FASD. The above is true because 1) hidden birth defects are a possibility due to the undiagnosed FASD and the prevalence of birth defects due to prenatal alcohol toxicity on the developing kidneys, heart and liver 2) the high possibility of atypical responses to medication 3) the findings that lower doses, often below therapeutic dosages, in fact. BTW, stimulant medication can often not work with this group or Ritalin will be less effective than other stimulants.

The difficulties you mention are typical. Memory deficits are a big one. Difficulties with emotional self regulation, executive function, increased academic difficulty when abstract learning comes into play (high school, for example), high verbal skills but lowered comprehension masked by being verbal. Also, decreased empathy is more due to Alexithymia, difficulty using words to express feelings (leading to yelling, swearing, hitting, etc) and limited ability in perspective taking (social thinking). Also, immaturity, which becomes much more apparent in teen years, often 1/3 to 1/2 of chronological age, in social/emotional functioning. There is also poor ability to learn from consequences leading to what looks like defiance as well as a tendency to get neurological stuck and, for many, poor sensory integration. What looks like defiance is often not understanding, being overwhelmed, anxiety (often huge in this group), and just plain being neurological stuck. Peer group affiliation in teen years often go south and these young people, who are so vulnerable to being used or not understanding danger, need supervision and then don't want it! An increase in difficulty in the teen years, at home especially is oh so common. Hormones are also affected by prenatal alcohol exposure and teens often go haywire with FASD. Manipulation….. no, think can't, not won't, think brain, not behavior.

College, the best and often life saving plan this parent can come up with for transition is to slow it down, way down. A young person going to college at 18 with this disability is oh so at risk for failure, "mistakes" due to neurological functioning that leads to jail and often worse.

If this boy was drug exposed he was alcohol exposed…. the co-occurrence is more than 90% and it is the alcohol that does the damage, more than meth, cocaine, heroin and marijuana combined, the strongest known toxin to the developing brain. This parent really needs to learn about this disability. The more she can parent differently the more the neurological meltdowns (rages) will decrease at home. And, yes, teens with FASD have a higher incidence of seizures, which again makes certain meds not a good idea, like Wellbutrin.

Intervention for "Behavior"…. Be careful, what you are seeing is NOT behavior but brain damage, i.e.. not learned. Behavioral approaches typically do not work for interventions. Remember cause and effect reasoning is affected and learning from consequences is poor.

The setting you describe is exactly it! And, I can add, staff that has been educated in FASD and appropriate accommodations.

[eoffg]

I've recently been looking at research into what is termed as 'Episodic Memory', in relation to Traumatic Brain Injury?
So that reading this thread, prompted me to look for research into FASD and Episodic Memory?
Where I found a considerable amount of research.
Which has identified FASD impacting Episodic Memory.
Where research into FASD, is helping to understand Episodic Memory.
Which basically organizes information in memory, by when, where, whom.

While it is easy to understand Episodic Memory as when and where.
It was only reading research into FASD, that I understood the 'Whom' side of Episodic Memory?
Where it is used for what is termed as 'Source Monitoring'?
Who said what?
But it also separates what we said, from what we thought about saying?
Also sorting what we thought someone else might say, from what they actually did say?

Where we don't think that their could be any confusion with what was 'thought', and what was 'said', and who said it?
Though research has shown that with FASD, this 'source monitoring' ability is effected?
Along with Episodic Memory, of when and where?

[empeg1]

Michellea: As in working with TBI, performance in FASD is often very inconsistent. What is learned at one moment is gone the next hour or the next day. And, yes, recall is so very affected, so that this young man not remembering the conversation about the tutor is most likely not manipulative but true for our his brain functions. I have had similar experiences with my daughter. That and the intensity which you mentioned, oh yeah, that is FASD all right. We have operate within a zone of processing or tolerance. With FASD, that zone is significantly narrowed and the person files out of that zone much faster. The brainstem, amgydala and the front cortex, areas that regulate the latter lower brain functions on the autonomic nervous system and emotions as well as perception of threat are all affected by prenatal alcohol exposure. Then too, all of the neurotransmitter systems are also affected.

Healthy listed a website, fascets.org. The mom may also want to google Nathan Ory and FASD; Dr. Ory has written a lot about FASD with some practical stuff for parents, teachers, etc.
It is oh so vital for this parent to learn about FASD. It is also vital for this parent to seek a diagnosis, if she has confirmed alcohol exposure.

Tutoring……. with a regular tutor? I don't think the above will be a good idea. It will be important for the tutor to know how to work with this young man or the "tutoring" is likely to blow up. Really, the basis is to understand that it is brain that one is seeing, not choice, not manipulation, and not behavior. It is also vital for anyone working with this young man to know about a peculiar trait of FASD: expressive language often far outstrips comprehension, so that the person seems far more competent than he/she is. And, expressive language is typically the highest skill, period, so that these guys are the ultimate "look good kids". That leads to expectations from teachers, parents, etc that the young person should be doing better than he/she is when the above is simply not a matter of choice. Then to top it off, even very verbal individuals with FASD have difficulty operationalizing words into action, so the person can tell you what he is supposed to do (and why) but then not be able to do the action. This leads to infamous difficulty in following through….. Again, all of the above is not a character flaw or manipulation, it is brain damage. Like with TBI, functioning is often "swiss cheese, from skill to skill and day to day.

Gotta tell you, that the best (and often only) way to work with a teen with FASD is through relationship. If this young man said he forgot the conversation about the tutor, take him at his word. If he went ballistic about the idea the next day, let it be for that day. Slow the conversation down. Ask him what his concerns are. See what he is willing to do. Have this conversation when he is calm and he knows he will not ! be forced into the tutor. Once a young person with FASD goes ballistic, it is best to say, I think there was a misunderstanding. Let's come back to this later. It's okay. ANd then stop talking (as processing can be difficult and the cortex is likely gone dark with such upset, further talking sounds like noise and just acts to upset more). Learn when to stop, when to back away. HUGE in parenting a child with FASD! Then the parent goes into his/her bedroom, says "om" many times and repeats silently, it is his brain.

[michellea]

Thank you, empeg - as you can well imagine, this is a difficult situation. On the plus side, the parent is willing to accept FASD. But, dealing with it can be counter-intuitive at times. Since I am not a therapist/counselor, I feel my role is to raise the issues, attempt to shift the paradigm and help her to find help. I have many worries - first is whether or not we can find the help, second is that the student is the Junior, and the school will want to graduate him asap, and finally, I question his career aspirations as an army officer. It does not seem to be a good fit given his disabilities - the structure may be good, but I worry about the stress and the mental health biases within the military. But, I am leaving that to side for now.......

Thanks for the ideas and resources. I wish I could have you on my shoulder as I work with the family and the TEAM.

AND thanks for the validation that the behavior is not manipulative - this was my feeling. Again, I will try to shift the thinking.

[empeg1]

Army officer…. probably not…… army, maybe. Yes, the structure and routine is really important and much of the details of daily care is done by the army, where one lives, no rent, no power bills, food…. but, and it is a big but, if the young man remains volatile then the army can also present with significant hazards, even if he does not see combat. For one, breaking rules in the army, well, there isn't much wiggle room and it is about inevitable that the above will happen with someone with FASD. Time in the brig is not a good outcome. The same can happen with conflict with other service people, which can come from misunderstanding due to poor perspective taking, cognitive rigidity, and, of course, emotional dysregulation. Caveat emptor!

The best way I have found in working with professionals when they have a client with FASD is to explain the above disability in the following way. FASD is a TBI with a touch of Autism. The above explanation is not scientific but it does explain the big picture of what one typically sees in an affected person and begins to ground others that FASD is NOT being a bad actor, poor parenting, manipulative, laziness, a bad character flaw, sociopath, ….. and all the other prerogative terms laid on folks with this brain based disability. Best to work on:

1) accommodations are key.

Environmental changes are important. A setting which is not over-crowded, no items hanging from the ceiling, well organized items on the wall and not a lot of different colors. Noise control. Place the student in the front and center for the class. A well structured environment with reduced stimulate
Use of structure and routine is vital
Multimodality teaching
Be specific in directions as to what one wants the person to do, Break down tasks and re-instruct. Write down instructions and do not just present the above orally, so the student can check what he is supposed to do as he is completing a task
Limit homework. Be aware that a person with FASD may demonstrate knowledge of how to do an assignment in one setting, i.e., the classroom, and then be unable to generalize that knowledge and extend it to home and homework. Knowing information at school does not mean this young man will remember the steps to do the same task for homework.
Also, with common difficulties in sensory integration, emotional self regulation, processing of information, very very common sleep disorders, and the stress of trying to fit in when one does not pick up social cues all day leads to an exhausted and grumpy teen for homework. Accommodations as to the amount are critical, so that the teen samples all elements of the homework but has less to do.
Allow for breaks in class if needed, which may mean simply putting one's head down for a moment.
If this teen is arriving at class late, look to sensory integration problems in crowded hallways during passing periods. My daughter used to hide in the bathroom during passing period until the school allowed her to leave a few minutes before the bell rang so she could get to her next class before the hallways got filled.
Does this young man have sped ed or a 504? If he is showing disorganization and difficulty turning in assignments this is NOT laziness! He needs RSP assistance with the above, in a concrete, hands on, explicit way. Be sure that the staff realizes the above is due to brain damage and that learning organizational skills and then being independent in the above is not a likely outcome. He may need such support ongoing and they are not to judge him for "falling to learn how to be independent".
Is this young man arriving home and coming in with his face like a thunder cloud? If so, he simply maybe overwhelmed by the effort of keeping it all together during the day, no mean feat for someone with a FASD! Can he leave school one period early and still finish his graduation classes?
If he does get upset at school, this young man will need empathy, relationship, not discipline and, most of all, a routine and place to calm down. Remember that learning from consequences is affected.
Use visuals in teaching, concept mapping, etc to supplement lectures, as language processing is typically slow and compromised even with high expressive language

2) Math:
is this young man struggling with math. Most individuals with a FASD have a math disability. Teaching math the same old way that it has been taught forever and just going over math taught in earlier grades will NOT help. If he struggles with math facts, give him a calculator for all assignments and tests, period. Making Math Real is an approach to teaching math for students with NVLD and it is multi sensory, highly structured, moves from concrete to abstract and is well suited to students with math disabilities. It goes up to calculus.

3) Abstract curriculum, this student may struggle with abstract thinking, in language, math science, in all subject areas, a real problem in high school, when the curriculum is all about abstract thinking. Teaching will need to be explicit. Also, kids with FASD often have a slow leak in holding onto information learned, here one day, gone the next, maybe back the next day? Teachers need to know that they must re-teach and jump start knowledge for exams, etc. Retrieval of information is a real problem in FASD. Accommodations as to alternatives to testing for a student to demonstrate learning. A practice exam can also assist in opening up long term memory. Study guides for this group is a must!

4) Make sure that one class is in a subject in which this student likes and can do well. Look to electives, for instance. Accommodations as to teachers will be vital. The counselor needs to hand pick teachers as to ones that are compassionate and flexible in how they teach and who are open to accommodating disabilities.

5) Teach this young man to begin to advocate for himself. Provide direct support for the above. Does he have a "go to person" in the high school? He needs one, specified in the IEP or 504. This person needs to reach out to this young man to establish relationship. Know that the better the support system around this young man the higher he will function and the less problems the school will see. Know that supports are needed long term.

6) Teachers need to be aware that just because this young man can tell them what he is to do it does not mean that he can then do what he just said! Modeling is an effective teaching technique with FASD and repetition when needed.

7) Students with FASD are vulnerable to neurological overwhelm, meltdowns. Mom and school need to know this and know that it is not a tantrum, manipulative, behavior, it is simply brain overwhelmed, with the cortex shut down and the brainstem in action. The person in such circumstances needs empathy and afterward understanding and a soft voice. That and learning the triggers for when the above happens.

Be aware of substance abuse, anxiety and depression!

[michellea]

Thanks so much, Empeg. I have passed on this information to the parent and the student's private support TEAM in hopes of causing a shift in their perspective. We have an emergency IEP meeting coming up and I hope we can get many of these accommodations in place. I fear, however, that without a definitive diagnosis and a team of FASD experts - or at least people that are willing to learn, that the situation will be hopeless.

The mom is completely overwhelmed right now - I feel she needs to seek some emotional support to help her get through things. I fear that she thinks I can provide the support - and of course I cannot. I can provide empathy and direction on how to work with the school, but I am not a mental health professional.

I'm wondering if I'm in over my head and if I should step out..... I'll see how things unfold - but I am concerned that if we can't get on the same page and establish some goals and an action plan - that things will spiral out of control.

[healthy11]

Michellea, I looked up some of Empeg's past posts, and perhaps you can give the boy's mother the following information, so she can seek support from other FASD parents and professionals:

Empeg has said, "the first steps to treatment come from recognizing what one is seeing in the child and a diagnosis. Here are some readings to start you off:

Eme, R. (2013). Fetal alcohol spectrum disorders: A literature review ...www.apadivisions.org › Division 16 › Publications › Newsletters‎

Mattson, S.D. 2013) Further development of a neurobehavioral profile of fetal alcohol spectrum disorders..www.ncbi.nlm.nih.gov/pubmed/22974253‎

O'Malley and Rich. (2013) Clinical Implications of a Link Between Fetal Alcohol Spectrum and Autsim. www.intechopen.com/...autism.../clinical-implications-of-a-link-between-.. A very important chapter in a book on psychiatry with FASD, available on line for free.

Google Streissguth, look for a seminal article written in 1996 (or 97) with 1400 subjects on secondary characteristics of FASD.

Go to SAMHSA FASD Center and look up their online training courses and fact sheets.

Go to the website FASCETS and order the small book, "Trying Differently Rather than Harder". It is a clear and easily understood approach to working with FASD. Its author, Diane Malbin, changed my life...

[michellea]

Thanks, Healthy. I've given her some of these resources, but not all. I'll provide her and the therapeutic team with more info and continue to try to shift their paradigm from "he is a willful trouble maker, lazy, no goodnik" to "He has significant disabilities that make it difficult for him to process and navigate the world without significant support and understanding". Currently, everyone is exasperated with his behavior and the adults are in a very "punitive" mode. I think it will backfire.

As an advocate, I am a pretty good parent coach/mentor. But, I don't know if I am up for this.

[healthy11]

To say the least, teen years are difficult even for parents of neurotypical kids, but when you toss in all the other factors that this student is dealing with, it's no wonder everyone feels frustrated and challenged (including, no doubt, the boy himself.) As Empeg mentioned, it would be helpful if he could first get a formal FASD diagnosis...

[empeg1]

Punishment for this young man will indeed backfire! Individuals with a FASD typically have difficulty learning from consequences in the first place. So much for behavior modification for such a student! Then, as we all know, being punitive does not work for anyone. Best to reinforce when a student does something you want him to do. And, with increasing anger likely with punishment for what this young man cannot do, what is already a volatile situation can escalate way beyond what anyone wants to happen. Many teens with FASD, for instance, end up in the juvenile justice system. I wonder if the team can wrap its head around the idea of punishing a student in a wheelchair because he "will not" walk when instructed to do so? Well……..? The teen years in FASD are often way more than difficult. Hormonal changes in a body with an endocrine system that is already dysregulated can affect the teen. The academics in high school become much more abstract; oh, oops, just the area with which a teen with FASD is likely to struggle. The normal process of differentiation from a parent in adolescence gets off track, due to emotional dysmaturity with FASD, the push pull for such a teen of I don't need my parent and for this teen he really does, like a younger child, black and white thinking, and the dysregulation of the stress system due to damage from prenatal alcohol exposure (with quick to anger, for instance, as a sequelae of a dysregulated HPA axis).

The adults can stay frustrated. They can stay mad. They can focus on punishment. And, they can continue to do further damage. It won't help! Will the mother consider speaking with me? I would be glad to talk with her. I do work with parents in California.

[michellea]

Hi empeg -
I will talk to the mom and see if she'll talk with you. I know that living with a teen w FASD must be terribly difficult. You've shared your stories here and I remember momoftwins (can't remember exact screen name). I think you could also urge/ help her to get a real diagnosis.

I"ll PM you if I get her to agree. Thank you so much. I'm feeling a bit helpless!

[michellea]

Hi empeg - I've PM'd you.

[jisp]

Michellea,
Another thing to consider is possible bipolar disorder, which can cause many of the symptoms your client is showing and is genetic. Often those who abuse drugs have mental health conditions that they are self medicating for. Teens with bp can often seem egocentric or selfish. And BP would result in weak short term memory that would get in the way of his being able to complete assignments and follow through. Just something to consider in addition to the FASD.

How do you feel about the team of professionals this parent has assembled? Are they knowledgeable and leaders in the field. There are plenty of experts in our area on adoption and FASD and mental health problems. If the mom is just seeing a standard suburban psychiatrist/psychologist then they too are probably over their head with this case. The parent might need to seek out people who are leaders in the field.

[empeg1]

Jisp:

Sorry, if there was prenatal alcohol exposure and this young man is showing clear signs of FASD, then it it walks like a duck and quacks like a duck,.... it is duck! Bipolar disorder is a common MISDIAGNOSIS with FASD. My own daughter went to see a neuropsychologist the summer before last for a diagnosis. The person was supposed to be a FASD expert; she was not. This neuropsychologist again brought up Bipolar Disorder, the 3rd time for my dd. In her childhood, dd was diagnosed as Bipolar 1, Bipolar 2, and Major Clinical depression? When a national FASD expert was finally brought in and he heard that BIpolar issues were once again brought up with my dd, he said rather loudly, THAT"S BULLSHIT! I would not recommend bringing in Bipolar Disorder in this case if there is confirmed alcohol exposure during the pregnancy, as the above will simply muddy the waters.

[empeg1]

One thing I would suggest if the parent will agree and there is money to do this is for a neuropsycholoigst trained in FASD to assess this young man. But, if it is a neuropsych who does not have expertise in FASD, the much mischief can ensue. More and more misdiagnoses do not help and treatment for FASD is diagnosis specific plus medication for Bipolar Disorder can have potential serious effects for a young person with FASD due to the possibility of unidentified birth defects, again from prenatal toxicity of ethanol on developing organs, liver, kidney, and heart.

[jisp]

Empeg,
I know you are an expert on FASD and you make some great points. One reason I asked the question about the professional team is that with complex situations like this one needs a team that is above and beyond what will work for most kids. You need experts who can tease out all the subtle genetic and environmental pieces to address them appropriately. A super good psychiatrist would NEVER just throw bipolar medication at a kid like this, but they also would not assume FASD is the only issue. They would be teasing this apart with a fine tooth comb and working closely with the family to move toward a treatment plan and find resources.

In the area where Michellea and I live there is not the same shortage of psychologists and psychiatrists that there are in other parts of the country. But at the same time there is a wide bell curve among how good they are because the Boston area trains so many in this field. For many kids those mental health providers in the middle of the bell curve will work. But for kids like this one needs to find somebody who is at the upper end of that bell curve and that can be tricky. It can take a lot of leg work, phone calls, pleading to get an appointment, etc....

For example I had one client whose daughter was struggling big time. Sure there were school issues. But at the end of the day what it came down to was a psychiatrist who simply was not a good match for the family or the girl. And although the psychiatrist was not bad she was not quite at the level this family needed as she did not have the experience working with kids who were especially bright like this girl. It took a lot of coaching and support to help the family see that this particular psychiatrist was just not working for them. But they did and switching resulted in the other pieces falling into place for the family and girl.

I know from friends and neighbors that there are doctors in here that specialize in adoptive kids, especially kids adopted from Russia and Ukraine (who almost all have FASD).

[empeg1]

No FASD is likely not the only issue, Jisp. It is likely that FASD IS the primary issue, a factor that is vital to recognize in order to intervene effectively for an affected person. And, it is also likely that a psychiatrist in your area, well trained or not, will not be knowledgeable about FASD. Hence the huge problem of misdiagnosis with FASD in mental health treatment and the ensuing difficulties that occur. SAMHSA, in fact, recently published one of their TIPS, a 150 page document, for mental health providers regarding FASD to address just the above problem. As for genetic and environmental pieces, FASD is not exactly an environmental piece in the traditional sense; it is a matter of ethanol toxicity inutero. Then too, epigenetic changes are being researched across generations with FASD. As for genetic factors in diagnoses such as Bipolar Disorder or Schizophrenia, it is still vital for this young man to first explore the issue of FASD and then look to what else may be going on as the need determines.