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.

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

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.

_______________________________________________________________

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)…

_______________________________________________________________

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