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