Autism Safety Toolkit

Autism presents a unique set of safety concerns for parents.Unlocking Autism and National Autism Association have teamed up to provide the following safety information for parents. If you have suggestions or additions that you would like to submit for this page, please email nancale@aol.com.In a recent online survey conducted by NAA, an incredible 92% of the respondents said their autistic child was at risk of wandering. This is a problem that must be addressed in every city and town across America. Please review the following information and contact your local first responders to get a plan in place for your child and others who may be at risk in your community.



Are You Prepared for a Autism Emergency?

To ensure safety and lower risk for a child or adult with autism, parents and care providers will need to become proactive and prepare an informational handout.



A leading cause for concern is children and adults who run away or wander from parents and care providers. Tragically, children and adults with autism are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a child or adult who has autism.



Wandering can occur anywhere at anytime. The first time is often the worst time. Another concern is preparation in the event that you become incapacitated or injured while caring for a person with autism at home or in the community.



An informational handout should be developed, copied and carried with you at all times--at home, in your car, purse or wallet. Also circulate this handout to family members, trusted neighbors, friends and co-workers. The handout will also come in handy if you are in an area other than your neighborhood and are approached by the police.



If wandering is a concern, contact law enforcement, fire and ambulance agencies. Ask your local 911 call center to "red flag" this information in their 911 computer data base. Dispatchers can alert patrol officers about your concerns before they arrive. When we provide law enforcement with key information before an incident occurs, we can expect better responses.



Alert your neighbors

The behaviors and characteristics of autism have the potential to attract attention from the public.

Law enforcement professionals suggest that you reach out and get to know your neighbors.

Decide what information to present to neighbors

Does your child have a fear of cars and animals or is he drawn to them?

Is your child a wanderer or runner?

Does he respond to his name or would a stranger think he is deaf?

Plan a brief visit to your neighbors

Introduce your child or adult or provide a photograph

If a neighbor spots your child outside of your yard, what is the best way for them to get your child back to you?

Are there sensory issues your neighbors should know about?

Give your neighbor a simple handout with your name, address, and phone number. Ask
them to call you immediately if they see your son or daughter outside the home. This
approach may be a good way to avoid problems down the road and will let your eighbors:

Know the reason for unusual behaviors

Know that you are approachable

Have the opportunity to call you before they call 911

Knowing your neighbors can lead to better social interactions for your loved ones with autism.



Prevention

If wandering is an issue for your family, consider contacting a professional locksmith, security company or home improvement professional.


Autism Emergency Contact Handout Model

Name of child or adult

Current photograph and physical description including height, weight, eye and hair color, any scars or other identifying marks

Identify your child's favorite song, toy or character

Names, home, cell and pager phone numbers and addresses of parents, other caregivers and emergency contact persons

Sensory, medical, or dietary issues and requirements, if any

Inclination for elopement and any atypical behaviors or characteristics that may attract attention

Favorite attractions and locations where person may be found

Likes, dislikes--approach and de-escalation techniques

A list of things that frighten your child

Method of communication, if non-verbal ‐ sign language, picture boards, written word

ID wear ‐ jewelry, tags on clothes, printed handout card

Map and address guide to nearby properties with water sources and dangerous locations highlighted

Blueprint or drawing of home, with bedrooms of individual highlighted


For more information, visit http://www.autismriskmanagement.com/ - by Dennis Debbaudt 2005



Provide local first responders with information on your child. http://www.papremisealert.com/sitebuildercontent/sitebuilderfiles/responder.pdf Fill out and print this form from Pennsylvania Premise Alert, then deliver it to your local police and fire departments.



Teach your child to swim.

Too often children with autism who wander are attracted to water. Be sure your child knows how to swim unassisted. Swimming lessons for children with special needs are available at many YMCA locations. The final lesson should be with clothes on.



Get an ID Bracelet for your child.

Include your name and telephone number. State that your child has autism and is non-verbal if applicable. Here are some examples.

http://www.medicalidstore.com/

http://www.mypreciouskid.com/medical-id-bracelet.html



If your child will not wear a bracelet or necklace, consider a temporary tattoo with your contact information. Tattoos with a Purpose are available at http://www.nationalautismassociation.org/products.php?cat=48



Consider a personal tracking device.



Gemini GPS Tracking Unit

Personal GPS tracking device works with your computer or mobile phone. Monthly service fee.


Ion Kids Tracking Wristband

http://www.nationalautismassociation.org/products.php?cat=34

Provides notification to parent when child wanders past a pre-set distance. Allows parent to track child while still within a 500 sq. yard area. Waterproof wristbands are available.


Project Lifesaver Tracking Systems

Project Lifesaver works in coordination with local rescue personnel. Search equipment is housed and maintained by local police or fire departments. At-risk individuals are provided with a transmitter wristband which is replaced monthly. Initial setup and personnel training costs approximately $7,000. For a program DVD and package to present to your local first responders, please contact Project Lifesaver


Recent article about Project Lifesaver Tracking System


Care Trak Transmitters

Care Trak utilizes the same technology as Project Lifesaver, but tracking equipment is operated by the caregiver and not local law enforcement or first responders.



Angel Alert Child Distance Monitor



Secure Your Home

Prevent your child from slipping outside unnoticed by:

Installing secure deadbolt locks that require keys on both sides

Install a home security alarm system

Install inexpensive battery-operated alarms on doors and windows to alert you when they
are opened - for an example visit: http://www.mypreciouskid.com/wireless-door-larm.html.

These are available at stores like WalMart and Radio Shack.

Place hook and eye locks on all doors, above your child's reach

Fence your yard



Helpful Links - Please visit these websites for more safety ideas.


Autism Risk Management


Pennsylvania Premise Alert The Premise Alert Program gives families the opportunity to provide critical medical information to first responders before a crisis. Families can have a difficult time relating necessary information in times of extreme stress. This program also gives first responders advanced knowledge of special needs individuals in their community allowing them to respond with greater accuracy which increases positive outcomes.


The Law Enforcement Awareness Network It is the mission of L.E.A.N. On Us to provide first responders with information and resources that will allow them to better serve individuals within their communities affected by hidden disabilities and mental illness.


My Precious Kid Child Safety Products



Tips for First Responders


Service Dogs



Tips From Parents

• I come from a large family and we have instituted a "hand-off" process with Luke - when we are at family gatherings, you look the person in the eye, ask them if they have Luke and they confirm. At that point, that person knows their primary responsibility is Luke, not side conversations etc. We put this in place after Luke managed to find his way out of a house filled with 32 people. It was winter and the neighbors spotted him running thru the woods - no shoes, no jacket, and they grabbed him. I have also put hook locks on all of the doors which at the moment he can't reach.”
  


• Get double key sided dead bolts for every out going door in your house or apt. Never let your child see where the keys are kept. My son has attempted to get out that way. He knew exactly what key to use. Never underestimate your child with autism.
  


• I spoke to all the county firemen and EMT on search and rescue of an Autistic child. I quickly covered tons of material and I also stressed that from everything I have gathered, drowning seems to be the number one cause of accidental death in Autistic children. I stressed to them time and time again, that each and every near water source should be checked as a first priority. I went into full detail about all the other places they could hide…If injured how they more than likely could not respond to EMT questions etc. etc. It was only 2 months later did they get to test their new found knowledge. A 4 year old ASD child wondered off from his house, his parents called 911 after about a 20 minute search. The Fire Dept followed my advice and found him in less than 10 minutes standing on the edge of the River Bank. He was safe and not to happy about leaving the waters edge. The towns Fire Chief called me after the fact and gave me the news. He said that without learning these things, he would have instructed all his men to search the parks and ball diamond first, in the opposite direction of the river!, instead he sent a few to the park and the others to the swimming pool, river and sewer treatment facility.My point is, just one hour with a group of firemen probably saved the life of a child. I volunteered my time, no experts where hired and not a dime was spent. If we can get others to do the same, what a huge difference it could make for the ASD community.
  


• I recently came up with an idea of making magnets with my daughter’s picture and my husbands and my cell phone on it. I plan on making cookies and going door to door in my neighborhood with both of these. I plan on talking to my neighbors personally, and just saying "hi" and letting them know my daughter has autism and where we live. I plan on leaving them with cookies in the hopes that if they see chrissy, they will offer her a cookie and take her into their car, home and call me.I have had issues with flight risk behavior and my neighbors have had chrissy walk into their home and start eating ice cream out of their freezer and they didn't know what to do. The next time she tried to do this, they actually would not let her in the house and this was very dangerous!! I have felt weird about talking to my neighbors so I came up with this idea. I hope this idea makes in into your kit, our behavioral supervisor thought it was a great idea and after the news on Benjy, I am going to stop stalling and do it asap.

Sorry for the gap in blogs

Sorry for the gap in blogs… court cases… summer… and my own family have really kept me busy…

… a Google search reveals that in 2003, 2.8 billion pounds of coffee were imported into the United States with 18.7 million pounds being classified as fair trade coffee.

Enlightening, huh?

In 2000, there were 133.6 million registered cars, 7 million buses and 87.0 million trucks.

The United States uses 385 million gallons of gasoline each day. Wow!

The number of saw-whet owls migrating through Pennsylvania was 250 during the most recent survey. Interesting?

How many children have a neuropsychological or psychological disorder? Ummm.

How many children have depression? anxiety disorders? post-traumatic stress disorder? autism? receptive language disorders?

Google them!

The answer… no one knows!

We can track down financial minutia (the prospectus for my 401K plan is 47 pages long), but we don’t know the prevalence of autism in children? We have daily television programs devoted to financial matters, home improvement/repairs (financial matters), gardening (financial matters), courtroom dramas… we are fed 50+ soap operas each week and how much time is devoted to our children?

We have five full-time 24-7 television stations devoted to sports and we can chart A-Rod’s batting average by week or month during the past four years but we do not know the number of children who will suffer from post-traumatic stress disorder this year!

Appalled? Try a little closer to home. How much did you spend on your last pair of athletic shoes? How much did you spend on your child’s athletic shoes? Now, how many hours did you spend with your children last year in athletic activities?

If your total cost (average parent plus child combined athletic shoe cost = $100+) exceeds the number of hours you spent with your child in those activities during the past year, put down the coffee cup, get out of the car, shut off the television and find your child. Spending time with your child or children is like putting love and life energy into your child’s “bank”. And for parents who are willing to make the investment, the benefit is that these same parents are in a position to make “withdrawals” in the form of making requests of their children to contribute to the home, to do chores… to obey the rules… to be good citizens in the family.

Our communities… our politicians… billboards… newspaper articles all broadcast our intense interest in and support for our children… “our children are our future”… “it takes a whole village to raise a child”… “the year (month, week, day, etc.) of the child”… but is it true???

Want to see what people think is important? … follow the dollars (recall “Show me the money!!”) Money is a symbol of our life energy and effort (we exchange our life energy/effort for money)… so where people put their money is where they invest their life energy. Purchases serve as our votes on how we are choosing to live our lives and what is important. What is in your budget? What is in the Budget for your state or the United States? Not children!!! Especially our poorest children who have the highest risk factors, who have Medical Assistance (MA), who provides the poorest reimbursement for services (we lose $10.00 per hour on MA), who professionals often avoid seeing because of the lack of reimbursement.

ADHD Part 2

Hmmm… I said I would get back to you (my own ADD / ADHD is currently under control and I actually recalled that I would finish my discussion on ADD / ADHD interventions)… so here it is…

…while not a “magical” treatment or even a “new” healing program (this will not make Oprah or the Early Morning Shows), research also clearly indicates hat behavioral interventions are of significant benefit among children with features of disinhibiiton including ADD / ADHD symptoms. In addition to the previously identified environmental and parental interventions, research suggests that introduction of cognitvive behavior therapy (CBT) interventions have promise particularly among children over the age of about ten years. Great thing about CBT … you don’t need to drop $120,000 on an education to learn or use it!

CBT is a step-wise intervention strategy that includes:

(a) increasing self-observer functions by labeling emotions (ie., “it looks like you are feeling…”) (to assist in articulation of negative emotions)

(b) providing cues/assistance in identification of antecedents or triggers for negative emotions (ie., “when did you begin to feel that way? where were you?, etc.) (to assist in identification of trigger zones or antecedents)

(c) learning to identify that behaviors are choices (ie., “what did you choose to do with those negative emotions?”) (to enhance higher level executive contributions to behavior)

(d) assistance in identification of outcomes (ie., “how did that work out for you?”) (to facilitate self-observation and utilization of feedback)

(e) assistance in recognition of the extent to which outcomes influenced triggers (“did those outcomes change the triggers?”) (to avoid vicious cycles in which behaviors have no impact on the triggers).

Existing research indicates that cognitive-behavioral therapy (CBT) – type interventions are among “what works” among high risk children and adolescents involved in juvenile probation. Parental instruction in the use of these techniques is critical to success because the therapists are the parents. So, finally, you get to do something! In addition to formal programming or therapeutic strategies, avoidance of emotional trigger words including “should”, “why”, “have to” and “try” often proves beneficial. These four words (or phrases) are often viewed as parental words that tend to elicit child responses including oppositionality, aggression, withdrawal, etc. See the old stand-by book I’m OK, You’re OK (Thomas Harris) for an explanation (read chapters 1-7). In lieu of these four curse words, insert choices (ie., what might you choose to do?) and questions (ie., what happened? when did it happen? what could you do?, etc.).

So… tired of waiting for the doctors to make things better? Want to get some control over your life and participate in the development and maturation of your child? Please do not “try” these interventions… but you could choose to implement them.

_______________________________________________________________

Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

ADHD Part 1

“My four-year old son was just diagnosed with ADHD. My husband says it’s a lot of “hooey” (which I assume is Pennsylvania Dutch for BS) and that the physician is a drug pusher. His mother (good old mother-in-law) thinks all the drug companies are a bunch of crooks, no better than an organized form of crime. My best friend says it's an epidemic, no one ever heard of ADHD when we were kids. And me? I think… well… I don’t know what to think. What’s the truth?”

The statistics for ADD / ADHD are staggering; 3-10% of all children have symptoms consistent with a diagnosis of ADD / ADHD; 3.5 million children take daily ADHD medications; $3.1 billion was spent on ADHD medications in 2005, an amount that reportedly is four times the number in 2000. So, is it an epidemic? The statistics would say “yes” if an epidemic is defined in terms of a disease or disorder “that appears as new cases in a given human population, during a given period, at a rate that substantially exceeds what is expected, based on recent experience (the number of new cases in the population during a specified period of time is called the "incidence rate").” (taken from Wikipedia). However, is the epidemic real or related to other factors?

Research appears to indicate that improvements in our diagnostic tools (and accuracy), introduction of higher demands within the educational system (“No child left behind”) along with “punishments” for schools that “leave a child behind” and the advent of medications that are both safe and effective (ie., why diagnose a disorder if you cannot treat it) contribute to the dramatic increase in diagnoses of ADD / ADHD.

But beyond that, there is some equally compelling evidence that the actual incidence of children with ADD / ADHD is on the increase much like the diagnosis of childhood autism, cancers, etc. And the cause? Hmmm. round up the usual suspects, toxic chemical factors, stress associated with our high speed technology lives, poisoning (heavy metals, mercury, lead, etc.) and nutritional deficits. Add in two parents working full-time with children being rushed from home to day-care to stores to … (you get the point), over-stressed families who have moved away from grandparents and extended family support… 133 television stations, video games…

Since we are not in a position to treat our modern lives nor control our children’s exposure to atmospheric toxic substances or heavy metal poisoning beyond normal precautions, parents often feel both helpless and powerless. However, recent work has suggested that a combination of interventions that ARE under your control may just have an impact upon a subset of children presenting with symptoms of ADD / ADHD.

Biological interventions: One such “biologcial” program under the control of parents (I’m excluding medications at this time since parents do not control medications) is the 4-A Healing Program of Dr. Kenneth Bock. The 4-A (which stands for ADD / ADHD, Autism, Allergies and Asthma) Healing Program components include: (a) Nutritional Therapy, (b) Supplementation Therapy, (c) Detoxification Therapy and (d) Medication. While the program may not work for all children with ADD / ADHD symptoms, existing evidnce along with anecdotal reports indicate that a subset of children do show benefits and from a cost-benefit analysis the cost of being wrong (ie., good nutrition, good diet, etc.) is minimal relative to the potential benefits. Will it work for your child? I do not know nor is there any evidence that anyone can identify children who will be responders.

Environmental interventions: Unfortunately there are no magic program or McDonald’s drive-through solutions. But we do know that providing high levels of structure within the home is beneficial … structure the child’s room, desk, backpack, etc… structure the child’s time with schedules… daily schedules (ie., posted on the refrigerator) including homework and play times. Reduce the pace of life… children exposed to frantic paces elevate their own activity levels to match the pace required… and the number one internvetion? SPEND MORE 1:1 TIME WITH YOUR CHILD! This does not mean dropping the child off at soccer practice, but more like 1:1 coloring, drawing, walking, hiking, throwing a baseball, reading, fishing, playing board games. Your time is the best intervention and to the extent that you slow down the pace, your child will match your pace (remember the “mirror neurons”)!

Other avenues? Hmmmm… let me get back to you on that one.

_______________________________________________________________

Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

The ADHD Bell Curve

“My seven year-old son is inattentive, off-task, distractible and has a short attention span. At home, he hops from one activity to another, never picks up anything … sort of an energizer bunny. The school suggested that we have him tested for ADHD. Does he have ADHD?”

“I was told (I love this one because the person who told them is never identified) that if your child was a climber as a toddler, then they have ADHD, that you can tell true ADHD in a child if he cannot fall asleep at night … if he stays up late.”

My first thought?, to be redundant, the doctors and nurses at the hospital should have told you about these things when you brought the baby home from the hospital. Children are inattention, they do not stay on task, they hop from one activity to another. Toddlers climb and infants are not always great sleepers.

The issue is not whether a child demonstrates or does not demonstrate a specific behavior or problem, but whether the frequency, duration and/or intensity of identified behaviors or problems are within the middle of the bell curve (the norm).

An understanding of the bell curve is critical to the concept of diagnosis. Ever heard of the bell curve? Well, this is what we know; all human performances (what people do) follow the normal bell curve. An example, a few people are fast, a few people are slow, but most people fall within the middle. A few people are strong, a few people are weak, but most people fall within the middle. The bell curve can be graphed as performance (horizontal axis) by the number of people (vertical axis) and when we graph these two factors, the graph looks like a bell with the highest number of people falling in the middle (called the mean) and progressively fewer people as one moves towards the extremes or tails.

The task is not to identify whether your child is inattentive (because we know that he is) but how much does his inattention (performance) differ or deviate from the mean or average child of the same age.

It turns out that not all children who are average fall exactly on the mean so we need to establish a “tape measure” to determine how much a child deviates from the mean. This measure of deviation from the mean (or “gold standard”) is called the standard deviation. About 2/3 children fall within about one standard deviation above or below the mean. This group of children is called the “middle of the bell curve” or average range.

So, does your child have clinically significant features of inattention? It depends on how much his behavior or problems differ from the mean. Behaviors that deviate from the norm by more than two standard deviations (less than about 5% of the children) are generally labeled as having features that are clinically significant or important. While the presence of clinically significant or important features of inattention (more prevalent than about 95% of children) is important to know, it still does not nail down an ADHD diagnosis.

My point? Objective measurements of behaviors or problems with subsequent comparison to age norms (bell curves by age) is the first step in understanding whether a behavior is a clinically significant issue. In the absence of standardized observations and normative comparisons, the diagnostic process boils down to the “mean” and “standard deviation” that that the professional has in his or her head based on clinical experiences. Maybe part of our confusion regarding diagnostic processes is because each clinician develops his or her own norms (means) including normal ranges (standard deviations) without recognition of their inherent bias.

Do your child’s behavior problems fall within the norm? Does your child still drive you crazy even if it’s not clinically significant? Hmmmm…the doctors and nurses should also have told you about that part too!

_______________________________________________________________

Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

dyslexia as being a visual problem

“My child can’t read… and the school told me its because he has dyslexia… he reverses his letters and they said that he gets the letters all jumbled. They said that it had something to do with his vision and as a result, he can’t read. Now what? Do we get an eye examination?"

Hmmmm… letters jumbled up meaning that you can’t raed? Are you albe to raed this eeven thugoh the ltteres are all mxied up? Aoccdrnig to rscheearch at Cmabrigde Uinervtisyity, ltteer odre deos not mttaer… the iprmoatnt ptar is taht the frist and lsat ltteer be in the rghit pclae… the rset can be a taotl mses and you can sitll raed it wouthit a porbelm. So… is dyslexia related to letters being jumbled up? Is dyslexia a disturbance of visual configurations of letters?

Research (see Dr. Jack Fletcher) among children reveals that phonetic or speech sounds processing is the most commonly the primary underlying disorder in dyslexia. Other contributing factors to low achievement in reading (or dyslexia which means a disturbance in reading) include low vocabulary and limited experience with reading (ie., few repetitions, insufficient time spent reading, etc.). Need to rule out reduced visual acuity as a contributor to slowed reading, headaches in the afternoon… by all means, please get an eye examination. But, dyslexia as being a visual problem? Hmmmm… maybe not.

So, how do I know if my child has dyslexia”? Well, dyslexia simply indicates a disturbance in reading… Is your child reading significantly below the level of his or her peers? If so, then he or she has dyslexia or a reading disorder. Unfortunately, dyslexia or the formal diagnosis of a reading disorder does not communicate anything beyond the symptom description. The real task is identification of factors that contribute to reading problems. In the past, various models have been employed to classify reading disorders with the discrepancy model holding court for the past 25+ years. The discrepancy model defines a reading disorder in terms of a significant discrepancy between reading achievement (lower) and abilities (higher) with some suggestion or assumption of a significant verbal (lower) vs. perceptual-motor (higher) processing discrepancy.

However, recent reviews of research (see Fletcher, J.M., Francis, D.J., Morris, R.D. and Lyon, G.R.. “Evidence-based assessment of learning disabilities in children and adolescents”, Journal of Clinical Child & Adolescent Psychology, 2005, Vol. 34, No. 3, Pages 506 – 522) indicates that this model has serious psychometric problems (meaning research cannot reliably replicate it). More recent work suggests that, while low reading achievement is the critical element for classification as a reading disorder (by definition), an evidence-based assessment must include an analysis of reading components (ie., see, discriminate letters, associate letters to sounds, put sounds together to make words, put words together to form sentences/ideas, formulation of themes and output) so that interventions are directed towards the weakest link in the chain of reading.

In addition, the work of Fletcher, et. al. (2005) calls for “a stronger underlying classification that takes into account relations with other childhood disorders” including a need for assessment of abilities (hardware), skills (acquired) and coping resources (ie., family support, teachers, educational instruction, etc.).

________________________________________________________

Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

Einstein’s Relativity

“I am a foster parent. My (foster) child appears angry with periods of rage and depression along with acting out, aggression… he can’t sleep at night, can’t sit still… and has basically no friends because he plays too rough. His family background is a mess… father is incarcerated, mother has a long drug history with multiple paramours, alcohol abuse, domestic violence. We have been told that he as ADHD, ODD and bi-polar disorder. He has "failed" trials on three different psychostimulants and now is taking some kind of cocktail that includes three medications at one time. Are his problems biological or environmental?” Hmmmm…

… this may take a minute to formulate a theoretical background… but please be patient with me… Einstein’s “Theory of Relativity” boiled down to its child-like essence goes something like this. As a boy, young Einstein would sit along the railroad tracks and watch the trains go by. In his book, Relativity, he recalls wondering what would happen if someone threw a ball up in the air while riding on a moving train. What would it look like? Well, if you were on the moving train the ball would travel in an arc … and one could actually construct a mathematical equation that would define the arc. But, if you were sitting beside the train tracks, the ball would travel straight up and down in a line and you could construct a mathematic equation that would define the line. Both are mathematical truths! So, which is true? Does the ball travel in an arc or line? The answer… it depends on the relative position of the observer.

Hmmmm… what does that have to do with neuropsychology in general or your child, in particular? Is a symptom/problem related to a physiological disorder (mass) or a psychological disorder (energy)? The answer? Yes… it is both… any symptom/problem will have both physiological (brain/body) and psychological (energy/spiritual) components. The implication is that a holistic approach that seeks to understand both physiological and psychological contributions to symptoms is critical… and that interventions must necessarily consider both physiological and psychological factors. The physician who treats only the body is a fool as equally as the psychologist who only treats the psyche… the mind and body are simply two aspects or perspectives of the same person… and treatments must consider both avenues.

What does this have to do with your child? It means that your activities, relationship, home environment, emotional tone, etc. are as critical to your child’s healing as the medication. Oftentimes we look to wizards (ie., physicians, psychologist, etc.) to treat the body and feel powerless or impotent to affect outcomes. Your efforts are central to healing!!!

_______________________________________

Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

Autism Part 2

So, what causes autism? The person who answers that question wins the Nobel Prize in Medicine! Unfortunately, my best guess is that there will not be an answer, but multiple answers since there is no autism, but multiple autism spectrum disorders each of which may have its own unique etiology (cause) and biological features.

The research on the causes of autism appears to bear out this hypothesis. In an article, entitled “Neuropathological Findings in Autism”, (Brain 2004 127(12):2572-2583; doi:10.1093/brain/awh287), that extensively reviewed the research on autism spectrum disorders Saskia J. M. C. Palmen, Herman van Engeland, Patrick R. Hof and Christoph Schmitz conclude that “the majority of the neuropathological data (on autism) remain equivocal” with studies variously relating autism spectrum disorders to: (a) a decrease in the number of Purkinje cells throughout the cerebellar hemispheres without significant gliosis, (b) features of cortical dysgenesis, (c) increased cell packing density of smaller neurons in the limbic system, (d) age-related abnormalities in the cerebellar nuclei and the inferior olive, (e) abnormalities in nicotinic and muscarinic cholinergic neurotransmitters/neurons and (f) abnormalities in the GABAergic system.

While neuroimaging and neuropathology studies have yielded equivocal (and occasionally polar opposite) findings, several functional features of autism spectrum disorders remain constant and implicate involvement of several brain functions.

• Studies have consistently demonstrated abnormal fear (ie., “fight or flight”) responses among individuals with autism spectrum disorders with references to social anxiety, poor eye contact (avoidance), sleep disturbances, obsessive-compulsive features, anger, poor impulse control, depression and paranoia… and these abnormalities in behavior coincide with research showing abnormalities in the size and function of the amygdale which is a relatively small almond-shaped region embedded within the limbic system, the same limbic system that govern “fight or flight” distress responses. This brain (amygdala) – behavior (fight or flight) connection appears to account for a cluster of symptoms/problems associated with autism spectrum disorders. Unfortunately, the cause of amygaloid abnormalities is not clear. While it is possible that the amygdaloid abnormalities reflect a breakdown in the blueprint (genetic/DNA), it remains quite possible that this abnormality is related to a breakdown in other brain regions connected to the amygdala (ie., other regions whose input to the amygdala spurs development). The possible role of a breakdown of the myelinated axons that connect brain regions (ie., limbic-frontal lobe connections) has been suggested.
  
• Research has consistently demonstrated the presence of abnormal sensory gating (ie. inhibition, selection, direction, etc.) among individuals with autism spectrum disorders with references to no pain responses, exaggerated pain responses, needs for deep pressure/touch, avoidance of touch, ear guarding under high stimulation settings, limited visual searches, … and these abnormalities in behavior coincide with research showing abnormalities in the size and function of the thalamus. The thalamus is located deep within the subcortical region and has been described as being the Grand Central Station of the brain with a primary function of routing sensory information (ala passengers) to their appropriate locations. Poor routing may account for sensory over-load along with failure to attend to some relevant stimuli… along with the bizarre symptoms of sensory contamination (see Born on a Blue Day in which the author reports seeing numbers in color). This brain (thalamus) – behavior (sensory routing) connection appears to account for a cluster of symptoms/problems associated with autism spectrum disorders. Unfortunately (does this sound familiar… see the amygdala above) the cause of thalamic abnormalities is not clear. While it is possible that the thalamic abnormalities reflect a breakdown in the blueprint (genetic/DNA), it remains quite possible that this abnormality is related to a breakdown in other brain regions connected to the thalamus (ie., other regions whose input to the thalamus spurs development). The possible role of a breakdown of the myelinated axons that connect brain regions (ie., cortico-thalamic and upper brainstem-thalamic connections) has been suggested.
  
• Research has consistently demonstrated the presence of abnormal social responses among individuals with autism spectrum disorders with references to poor eye contact, limited initiation of reciprocal play, limited attachment/empathy, failure to follow the gaze of others and failures to maintain social relationships… and these abnormalities in behavior coincide with research showing abnormal “mirror neuron” activity. “Mirror neurons” have been named due to the fact that the neurons appear to be activated when an animal performs an action and when the animal observes the same action performed by another animal. These “mirror” neurons have been implicated in observational or social learning, social interest and language development. “Mirror neurons” have been identified within the prefrontal cortex….and the “frontal lobes” tend to function as our executive or coach with functions of organization, planning, use of feedback to adapt/change, observer functions and internalization of social rules. This brain (frontal) – behavior (poor executive function) connection appears to account for a cluster of symptoms/problems associated with autism spectrum disorders… including disorganization (ie., lining up is not organization), poor planning (ie., inability to utilize the future for present decision-making), failure to use feedback (ie., perseverative responses), poor observer functions (ie., difficulties seeing the world through the eyes of others) and deficient internalization of social rules (particularly unwritten rules). Unfortunately (does this sound familiar… are you getting the picture?) the cause of frontal abnormalities is not clear. While it is possible that the frontal abnormalities reflect a breakdown in the blueprint (genetic/DNA), it remains quite possible that this abnormality is related to a breakdown in the myelinated axons that connect the frontal lobe to other brain regions.

So, what causes autism? We do not know but several lines of evidence appear to implicate a disruption in the development of the myelinated axons that connect various brain regions and that there may be a multitude of etiologies or causes that result in this final common pathway and then again, maybe there are simply a variety of etiologies and that our decision to group these disorders into a single category reflects our tunnel vision or narrow view. But the bigger question is…. WHAT DO WE DO? Hmmmm… maybe another time we can start that.

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Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

Autism Part 1

“Our two year-old son is a beautiful boy but we have become concerned. He still does not speak, actually, he doesn’t really look at you when you speak or appear to have any interest in what you say. We had his hearing tested by our physician and nothing appeared wrong. Our son does not initiate play with other children nor does he actually appear to have any interest in his peers. While he is a loving little boy, he does not really hug you back. Someone suggested that we have him tested for autism and we’re scared. Is he autistic? What do we do?”

Autism refers to a neuro (brain) developmental disorder that affects an estimated 1/166 to 1/500 children each year in the United States with an annual growth rate in diagnoses of 10 – 17%. Staggering statistics? Surely, but even more importantly notice the incidence of 1/166 to 1/500. Why the significant range?

I recall being horrified (as a youth) when Dalton Trumbo in Johnny Got His Gun indicted the United States government when he revealed that their own offices could not provide an accurate statistic on the number of soldiers who died in Vietnam, often missing the number by thousands. Were the lives lost so insignificant? I now find myself in a somewhat similar position. Why the significant variability or range in estimates of the incidence of autism? Why doesn’t someone know how many children have autism? Are the children with autism lost and insignificant? Hmmmm…

The answer may lie in the fact that autism is not a thing but rather the diagnosis refers to a constellation of symptoms/problems with a developmental onset or emerging during first three years of life. The diagnostic criteria or symptoms/problems required for the diagnosis of autism reads something like a Chinese Restaurant menu including “A total of six (or more) items from (1), (2) and (3) with at least two from (1), and one each from (2) and (3)”… that should clear everything up. Want to know what criteria (1), (2) and (3) are? Google Autism Disorder DSM.

But what are the core or essential characteristics of autism? Hmmm… the answer is that the symptoms vary as a function of age. What is normal in a one-year old may be abnormal in a four year-old.

• Early signs (during the first 6-12 months of life) of an autism spectrum disorder may include poor eye contact during parent-child interactions, an absence of cooing/babbling, an absence of reciprocal smiling and apparent indifference to others that may include tactile sensory features ranging from recoiling from touch to requirements for swaddling/holding close.
  
• During the 12 – 24 month age range, symptoms of a potential autism spectrum disorder include persistence of early signs along with no attempts to speak with associated gestural communications, limited communicative intent, limited play, repetitive body movements (ie., hand flapping, rocking, etc.), fixation on objects (ie., moving fans, prisms, balls, etc.), resistance to change and a tendency for the child to become overwhelmed in high stimulation settings.
  
• Later (age 24 months+) emerging features of a potential autism spectrum disorder include (in addition to persistence of other symptoms noted previously) a lack of initiation to engage in reciprocal play with peers, limited play, emergence of over-select behaviors (ie., lines up objects, requirements for sameness, etc.) and difficulties following the gaze of others. In addition, emergence of exaggerated fear responses ranging from extreme rage to total indifference (ie., to pain) is often observed.

So, does your child have an autism spectrum disorder? I do not know but I tend to have infinite faith in the gut feelings of mothers. If a mother informs me that she has fears that something may be amiss in the development of her child, I generally believe that something may be wrong. The answer? Sorry if I sound repetitive on this… but… you may wish to consider an evaluation to shed some light on the fears. So, if it is an autism spectrum disorder, what causes it? Hmmmm… let me think about that one (see you next week)…

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Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

HWAT's a Paretn to oD? dyslexia and your Child

“My child cannot read. She’s in second grade and she still reverses letters, omits letters in common words, guesses words when she reads rather than actually reading the words. It’s a constant struggle to get her to read. It takes all evening to get through a book, she gets so frustrated and is constantly in tears and we (her parents) feel horrible. Its not supposed to be like this. We took her to a professional who told us she has dyslexia but, now what?”

Dyslexia simply refers to a disturbance (dys) of reading (lexia). Enlightening, huh? Hope you didn’t pay too much to have it revealed that your daughter has a disturbance in reading (which, by the way, I assume you actually told the professional about two minutes into the interview).

The real challenge is to understand the underlying breakdown in processing that result in dyslexia or a reading disorder.

Reading is like a chain with each link providing its own unique and necessary contribution to reading. While professionals with different educational backgrounds and training may identify some different individual components (or links) that compose reading, most breakdowns of reading indicate links that include:

(a) visual acuity (can the child see)

(b) oculomotor functions (can the child scan a row of letters/words),

(c) visual-perception (can the child recognize and discriminate visual configurations)

(d) auditory acuity (can the child hear)

(e) auditory perception (can the child recognize and discriminate speech sound units)

(f) grapheme (letters) - phoneme (speech sounds) integration (can the child link sounds with letters)

(g) sequential grapheme-phoneme processing of units (can the child read individual words)

(h) sustained attention (can the child keep track of what was read)

(i) storage of data (can the child store a series of words)

(j) linking ideas/themes with words (can the child create mental pictures/images of what the words “say”)

(k) development of a general theme (can the child understand what was intended in the written communication)

(l) development of a response (can the child respond to the written words) and motor programming a response (can the child articulate the words or formulate a motor plan based on what was read)

So… your child has dyslexia? What are you supposed to do? It all depends on the stage at which reading breaks down. A chain is only as strong as the weakest link. Therefore, interventions directed towards “weak links” or components in the reading process are likely to result in the greatest benefits. The first step… complete a comprehensive evaluation of reading components or links. The intervention?… direct or focus interventions on weak links to obtain the greatest benefits or “bang for your buck.”

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Dr. Richard Dowell is a Neuropsychologist located in Pennsylvania. Dr. Dowell evaluates upwards of 400 children and adolescents each year. In addition, Dr. Dowell is recognized as one of the top Forensic Neuropsychological witnesses in the North East.

Dr. Dowell can be contacted at DrDowell@NeuropsychologicalServices.net

For more information on Neuropsychology visit NeuropsychologicalServices.net

M&M’s and a Spray Bottle Part 2

I wish I had asked for more than a week to address your question from the last installation.

You indicated that your four year-old daughter presents with multiple developmental delays along with eating non-food items, self-stimulation, self-abuse, some biting and rocking. The cluster of behaviors that you are describing tend to be classified as being primitive, meaning that the symptoms emerge during the neonatal/infant period and are generally related to limbic system-driven drives (eating/biting) and instincts (fight or flight). Under “normal” conditions of development, these instinctual behaviors are suppressed starting at about age three years. Onset of inhibition of these primitive drives/instincts corresponds with emerging development or maturation of frontal lobe inhibitory processing.

The same frontal lobe mechanisms that inhibit lower level drives/instincts (biting, pica, exploratory behaviors, “fight or flight”) are responsible for inhibition (over-rides) of sphincter reflexes for successful completion of potty training. Prominence of instincts/drives in governing behavior beyond about 3-4 years of age typically indicates a high potential for frontal lobe dysfunction or maldevelopment (which also undermines cognitive, adaptive and social development giving rise to references to “mental retardation”).

The behavioral program you described as being a “failure” in our last installation was an operant conditioning model. The frontal lobes learn via operant conditioning. Taken together, it should not be terribly surprising that a child who shows delays in frontal lobe development should fail to show benefits to an operant conditioning intervention. Development of a software program (operant conditioning intervention) that relied on hardware (frontal lobe) that the child did not possess was doomed to fail and as a result, you and your frontal lobe have been “punished” by the failure with resulting high levels of frustration.

In contrast, the limbic system is 40,000 years old, has not changed appreciably in 40,000 years and I’m guessing that you will not change it with a few M&M’s. Limbic system responses are elicited by unconditioned (no learning necessary) stimuli that are “hard-wired” into the system. However, the limbic system can be modified via classical or Pavlovian conditioning. Remember Pavlov? His work went something like this… present a dog with food (unconditioned stimulus) and it salivates (unconditioned response). No learning necessary. Use the can opener (neutral stimulus), present the food (unconditioned stimulus) and the dog salivates (unconditioned response). Eventually, open the can (conditioned stimulus) and the dog salivates (conditioned response). Limbic system responses are not modified by consequences, but are elicited or controlled by antecedents (triggers).

Hmmmm … and what has this to do with our child? The first strategy is to record the ABC’s (antecedent – behavior – consequence) of unwanted behaviors with an emphasis on identification of those antecedent stimuli or triggers that consistently elicit maladaptive behaviors. Recall (in previous installations) how I preach evaluation and assessment? This time, you get to do my job. Assessment is not a specific set of tests or tools, but a way of thinking and your assessment and recording are central to any program. Antecedent (A) stimulus recording generally includes the date, time and external environmental stimuli (who, what, when, where, etc.) that were present prior to the onset of maladaptive behaviors. Recording is an important part of the entire intervention process since it both sets a baseline against which to judge the effectiveness of any interventions and provides important information regarding potential antecedents. Once specific antecedents are identified, the next step is to avoid antecedents. I love this one (that I hear once a month) “every time we go to K-mart, my child acts out.” Solution, “do not go to K-mart.” The goal is to have low elicitation of limbic system-driven “fight or flight” responses. If one cannot avoid the antecedent (such as a sibling coming home from school), the next step is to “put the frontal lobe in front of the antecedent.” This rule suggests that once specific antecedents are identified, attempts should be made to introduce structured activities (frontal lobe functions) during high risk time frames. Provide your child with a routine task or set of tasks to complete (ie., set the table) when antecedents (ie., sibling coming home from school) are present.

You are probably wondering, “then what?” Hmmm… give me 2-3 weeks (see my frontal lobes are learning).

M&M’s and a Spray Bottle

“Our four year-old daughter has always been slow… slow to sit up, slow to walk (she never really crawled but sort of GI-Joe’d it across the floor), slow to talk (she has only a couple single words that sort of telegraphically communicate her wants)… and potty training?… it seems like it will never happen with no progress during the past year. She was diagnosed with mental retardation.”

“The most recent problems have been eating non-food items, she eats every piece of fuzz on the carpet, self-stimulation, self-abuse, she hits her head on the floor when frustrated, some biting and rocking. When recently seen by a professional (psychologist, physician, therapist, etc.), it was recommended that we initiate a behavior modification (operant conditioning) program in which we reward her with preferred items (attention, M&M’s, touches, etc.) when she displays positive behaviors, ignore her (extinction) when she is engaged in negative behaviors that are not physically injurious and spray her with a water solution (punish her) when she is engaged in self-injurious or aggressive behaviors. After two months, our daughter has shown a dramatic increase in physical aggression and has learned to adeptly avoid sprays to the face while we have felt like total failures as parents while our child appears to fear our presence. What do we do?”

First things first. The diagnostic system adopted by the American Psychiatric Association and utilized by the American Psychological Association is an “axial” system that is described in the Diagnostic and Statistical Manual of Mental Disorders (DSM for short). Numerous versions and revisions have been completed across time that reflect changes in our understanding of various symptom complexes.

The axial system has five axes that include: Axis I (Clinical disorders that may be the focus of clinical attention or treatment), Axis II (Personality disorders and mental retardation including factors that may mediate symptom expression), Axis III (General medical conditions that are potentially relevant to understanding and treating Axis I and II problems), Axis IV (Psychosocial and environmental problems or stressors that may affect symptom/problem severity and Axis V (Global Assessment of Functioning or the clinician’s judgment of the individual’s overall level of functioning).

My take on the process? Axis IV and V are so poorly correlated among observers to be irrelevant or meaningless (this opinion may not be shared by others). Axis I is analogous to the current weather conditions (it is raining, it is snowing, it is a thunderstorm, etc.). Axis II is analogous to the severity of the weather conditions or associated factors (28 degrees, high winds, etc.) and Axis III is analogous to the underlying cause of the current weather conditions (a cold front from Canada merging with a warm front from the Gulf of Mexico) that cause or contribute to the Axis I (thunderstorm) and Axis II (high winds) diagnoses.

For your daughter the Axis I diagnosis is the presenting symptoms/problems or what you are seeking assistance in addressing. Axis I diagnoses may include Pica (eating non-food items) and a Disruptive Behavior Disorder (self-abuse, aggression). To discover that your child has been diagnosed with Pica or a Disruptive Behavior Disorder is not particularly enlightening (particularly since you told the professional what those symptoms were). The Axis II diagnosis of mental retardation is similarly unenlightening, it simply refers to the degree to which your child’s cognitive, behavioral, adaptive living and social development deviates from the average or middle of the bell curve. You said “slow” or “delayed”… the IQ score simply provides an estimate of how much (IQ = 60 = 40% delay relative to peers, IQ = 55 = 45%, got the idea, 100 – IQ = % delay).

To discover that you finished fifth in a race does not provide insight into how to improve your running speed.

In contrast, the Axis III diagnosis refers to biological and/or neurological factors that underlie or are the cause of the Axis I and II diagnoses. Axis III diagnoses could potentially include maldevelopment of myelinated axonal connections from limbic to frontal regions secondary to premature birth, frontal lobe disconnection secondary to perinatal hydrocephalus, stroke involving the left middle cerebral artery, shear strain injury secondary to high force trauma to the head, etc. The Axis III diagnosis is designed to identify the “hardware” (computer analogy) limitations or factors that contribute to, drive or cause the presenting symptoms (Axis I).

Does your daughter have mental retardation? No… she may show a slow (retardation) rate or incomplete development of skills. What do we do?” Hmmm… give me a week to think on that one.

Defiant Johnny

“Johnny is oppositional and defiant! He doesn’t listen… and when you tell him “no” or to do something, he explodes… he screams, hits, kicks… he used to bite… but now he generally just throws things and yells at me. We’ve been at this since he could walk (unspoken: “… and we are very tired”). I can’t even leave him at school (the respite center for most parents)… they call a couple times each week with more complaints… he doesn’t stay in his seat, he doesn’t listen, he hits other kids… plays too rough on the playground. He saw a couple counselors but nothing helps.” This scenario, in various terms by various parents, plays out during the initial screening about 200-300 times each year in our clinic (from among 400 referrals). Interesting (to us), but frustrating to the parents, Johnny sits stoically during the recitation of his “crimes” with nary a complaint nor hint of the symptoms that are tearing this parent (and usually family) apart. Occasionally a parent may go so far as to prod the child into a negative response simply to show that they (the parent) are not lying. Other parents support their argument with a recitation of the teachers, service providers, family, etc. that have been ravaged by their child’s behaviors and concluded the ominous diagnostic verdict, “Your child has oppositional defiant disorder.”

A child who is oppositional and defiant has “oppositional defiant disorder?!?” As professionals, we may need to guard the diagnostic secret that all we do is say “disorder” after the child’s symptoms! Given this line of reasoning, secondary diagnoses for this child could include “scream disorder and kick disorder.” Labeling the child’s symptoms as “oppositional defiant” does not advance understanding of the etiology of symptoms nor potential treatment avenues. Unfortunately, this scenario plays out millions of times each day for children across the country with similar conclusions. The primary cost of this labeling approach to diagnoses is that it tends to result in termination of the search for the underlying etiology or cause for the presenting symptoms. The solution… complete an evaluation or assessment to search for factors that may contribute to the symptoms.

Existing research irrespective of diagnosis indicates that outcomes are related to three factors including: (1) abilities (ie., “hardware” or central nervous system-based processing capacities), (2) skills (ie., acquired responses based on the environment including academic skills, daily living skills, social skills, etc.) and (3) coping resources (ie., “software” packages written by a child in response to the world in which they live). Given this background, a logical extension is that failures of positive outcome (ie., oppositional defiant behaviors) must similarly be related to limitations or deficits related to abilities, skills and coping resources.

What about Johnny? Test results showed strengths across measures of verbal (language), perceptual-motor, learning/memory and higher level reasoning abilities. In contrast, deficits were observed across measures of lower level executive or “conductor” functions including: (a) inhibition (b) rhythm/background tone and (c) “select” (ie., multi-tasking, shifting mental sets, etc.) functions. Deficits in inhibition (or disinhibition) were reflected across external stimuli (ie., short attention span, distractible, etc.), motor responses (ie., hyperactive, hurried, fidgeting, messy, etc.), behavior (ie., rule violations), mood/emotions (ie., irritable, anger, temper tantrums, etc.) and arousal level (ie., difficulties falling asleep, constant motion, broken sleep, etc.). Poor rhythm/background tone was reflected in low frustration tolerance and difficulties adapting to change. Deficient “select” functions were reflected in difficulties with respect to multi-tasking (ie., performing two tasks at once or in rapid/alternating succession) with a high frequency of off-task behaviors (ie., failure to complete assignments, requirements for re-direction and difficulties completing assignments on time). The conclusion…. Johnny’s collection of symptoms/problems (his “ODD”) was related to a breakdown in abilities that warranted a similarly biologically-based (central nervous system) intervention program foundation. Research suggests that an estimated 90% of children with this profile (who also meet ADHD criteria) show benefits to psychostimulant medications.

Mustard Seeds and the Two Poles

“My ten-year old son has dramatic mood swings. He can be happy one minute and another minute, he’s in a rage for no apparent reason.”

“What sets him off?”

“Mustard seeds.” (I love this one… an actual quote).

“He is irritable all the time, overly aggressive with his peers at school and defiant (ie. yells, curses at parents, etc.) to the point of belligerence towards us. We went to see a professional (ie. physician, psychiatrist, psychologist, etc.) who said that he has bi-polar disorder!! We’re terrified. Does this mean that he will have this the rest of his life?”

Bi-polar disorder implies that a child has two (bi) (polar) opposite emotions or behaviors with some implication that transitions from one pole (depression) to other pole (anger, mania, etc.) may occur rather abruptly and with minimal (mustard seeds) or no apparent cause. Does your child present with features of “bi-polar”? The answer is “yes” and most likely your child would meet the diagnostic criteria for bi-polar disorder. But, this diagnosis is a symptom-based diagnosis, it refers to a cluster of symptoms (such as “headache”) and does not actually have a defined etiology or cause (such as “trigeminal neuralgia, cervical neck strain, brain tumor”, etc.).

Does he have bi-polar disorder? Hmmmm… From a process perspective, bi-polar disorder symptoms may be related to the presence of primitive limbic system-driven “fight or flight” activation (ie., gas pedal for emotions, drives, instincts, etc.) that is not adequately or effectively modulated by higher level frontal lobe inhibitory systems (ie., brakes, social rules, etc.). In other words, symptoms of bi-polar disorder are related to limbic system activation and/or frontal lobe dysfunction.

• Limbic system activation may be causally related to biological/genetic factors (possibly “true” bi-polar disorder with a higher state of background arousal) or in response to environmental factors including trauma, unmet needs for safety or security, abuse, neglect, etc. (possibly post-traumatic stress disorder).
  
• Frontal lobe dysfunction may be related to biological/genetic factors with associated failure to establish limbic-frontal lobe subcortical connections (possibly Fragile-X syndrome, Asperger’s Syndrome, prematurity, etc.) or environmental factors including neglect, deprivation, etc. (possibly Reactive Attachment Disorder).

The solution?, consider completion of a comprehensive evaluation that may facilitate identification of etiological factors contributing to your child’s symptoms/problems so that subsequent treatment interventions may focus on treating the cause, not medical management of superficial symptoms!

My Lazy Kid

“Teachers have been telling me that my child is lazy and that if only she just worked harder, was more motivated, etc., then she could do very well. We have responded by setting aside daily study times, requiring her to complete all homework before going out to play, providing her with stars for success, taking away all video games and grounding her for poor grades. Our interventions have resulted in study times that take all night, angry outbursts, depression (“I just wish I was dead”), loss of friends, no free time and… poor grades. Help!” The parent saying these words generally looks the part of the beleaguered parent with the wear and tear of endless nights of battles over homework and being the target of child anger being etched in their face.

Hmmm….. First, a quiz. Which would be easier? To put in forty-five minutes of study time, go out and play, be the recipient of parental praise and have extended free time… or… take four hours to complete a homework assignment while having your parents relentlessly harass you, lose privileges, have your videogames taken away, lose friends and have no free time to play? I’m thinking that it would be much easier to just do the work in the shortest amount of time and receive the benefits… and so would every child. Present to each child in school (through about age 12 years) a request that “Who ever wants an “A” in all their classes for this year, just raise your hand” and you will see 100% compliance or agreement. If the ante was raised slightly, “Who ever wants an “A” in all their classes for this year, raise your hand and walk around the track one time (400 meters)” and you may see a slight reduction in compliance. How about “Raise your hand, walk around the track one time and run the 100 yard dash in under 11 seconds” and you will begin to lose some more hands.

The point?…. everyone wants success, but at some point the child may not have the tools to achieve that success. For the child that is working four hours while screaming and crying, losing privileges and enduring parental harassment, these conditions are obviously more readily available than success by studying 45 minutes. I see about 350 children each year… and during the past 20 years, I believe that I have seen about three “lazy” children (and each of these were adolescents with psychopathic features). The rest? The rest were children with undiagnosed learning disorders that have variously included deficits in attention, visual-spatial processing, visual-motor integration, auditory processing disorders… or children that were the victims of significant life stressors, neglect, deprivation, etc. that undermined their capacity to translate abilities into “real world” performance on a consistent basis.

Your child has been labeled “lazy”? Consider the probability that your child has an undiagnosed learning disorder or other stress-related disorder. The solution… consider having a formal evaluation completed to rule out this potential.

Generic Treatment - Sex Offenders are not all Created Equal

I just finished reading a March 6, 2007 New York Times article on adult sex offenders that indicates dismal outcomes (high recidivism or repeat offending) among individuals who participate in sex offender programs. The article appears to relate this failure (in part) to our failure to complete research on treatment programs and effective interventions (when I thought that the major cause of sex offending was due to the presence of perpetrators). Sometimes I feel like a broken record... but my belief is that one of the major problems in the area of sex offender treatment programs is that the programs tend to treat "sex offenders" using "programs". There is not a thing that is a "sex offender"... only individuals who engage in sexually inappropriate behaviors... and a as a result, any “program” that treats sex offenders is bound to be associated with limited results.

About twenty years ago, I had the wonderful opportunity to experience and be mentored by Dr. Jan van Eys in the Dept. of Pediatrics at M.D. Anderson Hospital and Tumor Institute (who mentored everyone who had the good fortune to be near him). During one of our discussions, he indicated that existing treatments for ALL (acute lymphocytic leukemia) were not 60% effective (which is what I recall the literature stated at that time), but that the existing treatment was probably 100% effective for 60% of the children and 0% effective among 40% of the children. Wow… the thought changed my life. The task in cancer treatment… like ADHD treatment… like sex offender interventions… is to learn to identify those individuals who benefit from specific treatments and to develop alternative interventions among individuals who do not respond to specific treatments. The critical factor to this type of undertaking? …perform evaluations that provide data to allow us to differentiate among responders and non-responders for treatment.

My experience with child & adolescent sex offenders has really been enlightening, maybe 30-40% (I'm making up these numbers... but an estimate) are Asperger's Syndrome / Nonverbal Learning Disabled adolescent males who are unable to engage peers in social (or sexual) relationships and, as a result, tend to drop down to engage with younger children (i.e. the 16 year-old Asperger's male who cannot "get" the 16 year-old girl and drops down to engage with 10-12 year old females and proceeds to act out 16 year old sexual behaviors with a 10-12 year old female); another 20-30% may be low IQ - low frontal lobe processing - very disorganized, poor planning, failure to perceive consequences of actions, failure to identify with the victim or see the world from the perspective of others and violations of social rules/norms in the service of personal needs/wants and as a result act out more primitive drives; maybe 30-40% have a history of early sexual experiences and abuse that results in early sexualization, sort of like they "taste" sexual experiences/pleasures before they are in a position to appropriately channel it, they often attach sexual drives to children (since they were sexualized as a child) and subsequently as they become older repeat the attachment. They also tend to internalize or identify with their perpetrators and act out the sexual abuse they experienced. For another maybe 10%, sexual offending is about dominance, same-sex offending to dominate other males. This group tends to have high scores on the Psychopathy Checklist - YV. Generally "scary" to the community… repeat offenders who will use other means of domination including bullying, aggression, threats, etc. While I recognize that children / adolescents who are sexual predators have a high rate of exposure to sexual abuse, this exposure does not affect each child the same. Some become sexual offenders (maybe if they have other risk factors like Asperger's Syndrome, limited frontal lobe processing, etc.) some do not.

I’m not sure about the percentages (above), but in our practice, we have some prototypes that we tend to see as recurring and the interesting fact is that each group (and each child) is different and requires an equally individualized treatment plan that addresses their specific needs. I don't mean to criticize others for classification of all sex offenders in one group, and then embark on my own classification that simply has several groups, but I thought I would share some of my experiences & perceptions (since if I reviewed each individual child that we have seen, this blog would be even more cumbersome than I already have made it). Anyway, I feel like we embark on interventions, treatments or programs for individual children & adolescents before we have completed the evaluation to identify the cause…and the result?… catch the NY Times article… read your own local papers…

Pharmaceutical Guinea Pigs

You enter your physician’s office… once again you are greeted by a smiling nurse that escorts you quickly into an examination room where moments later the physician enters the room. She nods pleasantly and greets you with a smile. You inform her that you are experiencing abdominal pain. The smile does not leave her face as she begins to write vigorously on a prescription pad. After a few minutes, you are greeted with the product of her efforts…. a prescription for gall bladder surgery. You gulp… “Surgery???” you ask imploring a different response, “… but how do you know?… couldn’t it be something different?” Your physician smiles and unveils the explanation, “We have found that statistically speaking, the highest base rate disorder to account for your somatic distress is a gall bladder problem and the definitive treatment for gall bladder problems is surgery… so we’ll do the surgery first… if you still have the symptoms one month after surgery, then we may consider doing some testing.” Ludicrous?!? I hope you are nodding “yes”.

Unfortunately, many parents who present their children to professionals (physicians, psychologists, etc.) with symptoms of inattention and hyperactivity receive psychostimulant therapy since statistically speaking it is the most common childhood disorder associated with inattention and the definitive treatment for inattention is psychostimulants. The parents are subsequently informed that if the child fails the psychostimulant trial (ie., meaning the child develops insomnia, crying spells, shakiness, emotional lability, tremors, tics, etc.), then an evaluation may be considered. Ludicrous?!?! I hope you are still nodding. Managed care organizations (HMO) and insurance carriers support this approach by encouraging treatment of children but denying or limiting insurance coverage for evaluations. In other words, you (the consumer) are actually paying for and supporting the strategy of using medications to rule out or rule in a diagnosis. While the American Medical Association and its various branches decry this strategy, the reality is that medications, and psychostimulants in particular, are commonly used as a tool in diagnosing attention deficit and attention deficit hyperactivity disorders (ie. “Let’s give this a try… if its ADD/ADHD, then the medication will work…”). The Solution… ask “…and what will happen if it does not work?… adverse symptoms? delays in treatment? child perceptions of being a guinea pig. Parents need to be empowered to say “no” to medical testing on their children and request evaluations prior to treatment.

Hmmm… let’s open up the skull and see if there is a tumor or just nothing.

Time: A Marker for Change Part 2

OK… I was not dodging the first part of the last question (even though it may resonate with my life and I would probably feel better dodging it). “My child always did well in elementary school… but since about 5th or 6th grade, his performance has really deteriorated… he is disorganized, does everything at the last minute, makes repeated careless mistakes. I’ve been told that a lot of kids have difficulties at that age due to the transition into middle school along with the hormones kicking in. Is this just a maturity thing? Will it just get better with time?”

The first part… “is this just a maturity thing?”. The answer is most likely “yes”, “no” or “yes and no” (which philosophically-speaking should cover all states of the universe). Helpful? Let me expand. The collection of “coaching” functions including organization, planning, utilization of feedback to adapt responses (along with assumption of an “observer role” to perceive the world through the eyes of others, internalization of social rules and inhibition of lower level emotions), has been related to the frontal lobe. Studies indicate that this frontal lobe or “social” part of each of us shows a trend for progressive development or maturation throughout childhood. Existing social institutions (ala Erik Erikson) have evolved to mirror this maturation process. During the first few years of life, the frontal lobes play a very limited role…ergo the egocentric (“terrible”) under-socialized two year-old tramples social rules in service of self. At about age 3-4, children complete toilet training. Completion of toilet training reflects initiation of frontal lobe processing (and inhibition of lower level behaviors). At about 5-6 years of age, children start kindergarten. Initiation of formal schooling parallels a phase of rapid growth or maturation of the frontal lobes. At about age 12 years, children begin to change classes in school and manage social interactions independently. This time frame corresponds to a phase when the frontal lobe development has progressed beyond 50% development. This frontal lobe development also corresponds with reduced parental input (as the “external hard drive frontal lobes”). At about age 16 years, we (and other drivers) hope that the frontal lobe development has developed to at least about 85% to sustain executive driving skills and by age 21 years of age, frontal lobe processing should approximate the adult level or about 100%.

Children at age 12-13 years show very dramatic differences in rate of growth secondary to hormonally-drive growth spurts. As a result, children in this age range often show dramatic variations in the extent to which the frontal lobes are maturing. Children who are later maturing (with respect to the frontal lobes) often present with features of disorganization (ie., desk, backpack, outlines for writing, study notes, etc.), poor planning (ie., spur of the moment), failure to use feedback to adapt (ie., repeatedly make same mistakes), poor observer functions (ie., difficulties understanding how others may see the world, difficulties with peers, etc.) and limited control of basic emotions with resulting dramatic mood swings, irritability, acting out and rule violations. While “maturity” or growth results in changes, it is the quality of the environment (ie., parenting) that channels the growth into effective processing. Therefore, while maturity may result in positive changes, the positive changes are not a given unless the parents are able to establish and develop a good “frontal” lobe environment that includes: (a) high levels of organization (ie., desk, backpack, room, etc.), (b) high levels of planning (ie., schedule, daily planner, daily study times, etc.) and (c) consistent and predictable feedback (ie., require child to correct tests, study after tests to learn areas of weakness, well-defined rules and consequences, consistent and predictable consequences, etc.). Stability during this stage of instability is critical to positive growth.

Time: A Marker for Change

“My child always did well in elementary school… but since about 5th or 6th grade, his performance has really deteriorated… he is disorganized, does everything at the last minute, makes repeated careless mistakes. I’ve been told that a lot of kids have difficulties at that age due to the transition into middle school along with the hormones kicking in. Is this just a maturity thing? Will it just get better with time?” The last two questions posed by beleaguered parents take on the quality of a hopeful plea.

Last things first. “Will it get better with time?” Check out your garden… some weeds crop up. Will the weeds get better with time? How about the rusty fender on your car… will the rust go away over time? Unfortunately, nothing changes as a result of or due to time. Time is a marker for change, but time actually causes nothing. So, the belief (or perhaps wish) of parents that “time” will make things better is unfortunately not true. What actions you take across time, however, definitely have the potential to make things better. Unfortunately, some actions have the potential to have no effect and some actions have the potential to make things worse. Actions, like treatments, need to address the specific underlying problem or issue. Weeding the garden will enhance the quality of the garden, but has no known effect upon the rust in your car’s fender. Likewise, the actions of trimming away the rusty fender, sanding, painting, etc. may enhance our fender, the garden weeds tend to show limited effect (unless you pour the solvent on the weeds). Getting the point?! An effective intervention (or parental action) must address the underlying problem or issue. The solution… treatments, interventions or parental actions must begin with a comprehensive assessment of the problem and factors contributing to the problem.