Autistic Teens: the Driving Dilemma

Depending upon where you live in the United States, the decision to let your HFASD (High Functioning Autistic Syndrome Disorder) child drive could rest solely on the shoulders of parents.

If you are lucky enough to live in a state such as Pennsylvania, then all teens applying for a driver’s permit must have a physician sign off on their potential driving abilities.  And if you live in Michigan, Montana or Illinois (for example)  then all teens also need proof having a Graduated Driving License certificate.

That teens are impulsive, at times irrational, and often unpredictable is common knowledge.  These characteristics are often even more pronounced in HFASD children.

In addition, a child with HFASD often has issues with communication, motor regulation, and social skills, all of which are factors that can impact driving skills.  Very few studies have been done on these teens to access their abilities and the potential issues regarding their safety and the safety of others on the road.

It is a statistical fact that the incidence of teen deaths and automobile accidents are closely linked.  Some place automobile crashes as the number one cause of teen deaths.  The Center for Disease Control reports that in 2009 8 teens ages 16-19 died everyday from motor vehicle injuries.  The report goes on the state that per mile driven, “teen drivers ages 16-19 are four times more likely than older drivers to crash”.  Therefore, investigating how teens learn to drive and specifically how HFASD teens learn is a significant safety issue.

Occupational therapists often teach driving to adults who have had injuries that change the way they drive: spinal cord injuries for example.  With the exponential increase of those being diagnosed with Autism, the role of the OT in teaching and assessing driving abilities should be a essential part of therapeutic interventions when addressing the functional capacities of teenagers in treatment.

While not all teens with autism will become drivers, it is important to note that many will.  Patty Huang, MD, a developmental pediatrician at the Children’s Hospital of Philadelphia (CHOP), as devised a list of predictive factors of HFASD teens who will want to and who are most likely to become drivers.  This list includes but is not limited to:

·      At least 17 years old

·      Enrollment in full-time regular education

·      Planning to attend college

·      Having held a paid job outside the home

·      Having a parent who has taught another teen to drive

·      Inclusion of driving-related goals in his or her individualized education plan (IEP)—this is where OT’s can have a lot of input!

Occupational therapy, while common with the elementary school aged child, is less so with the high school teen.  The OT’s role in the IEP Plan would be to assess and set the driving related goals.

Research supports that teens that have participated in Graduated Drivers Licensing (GDL) programs are 38%-40% less likely to have accidents than teens that were taught by family members or by other individuals.  With a GLD rights and privileges for operating a vehicle are slowly gradually graduated into a program that eventually leads to fully independent driving.

It is during that period that the occupational therapist can work on increasing rate of motor response speed, visual scanning, peripheral visual awareness, midline issues (turning the steering wheel with both hands), integrating the concept of attention concerns (radio/tape player/friends, etc.) and reciprocal motor movements both upper and lower extremities.

Creating a pre-driving competency checklist may be helpful for starting such a program in your state.  Be sure add specific laws that are essential for the driver to know, process and understand.

Dr. Vanessa M. Dazio, OTD, OTR has a checklist for aging drivers that I slightly altered for the teen driver. You can read more from Dr. Dazio at: http://www.safeaging.com/information/SkillsDriving

Driving is multi-tasking taken to an “art form”.  Driving engages the total person: physically, mentally and emotionally.  Being able to not only be aware of yourself, but everything around you requires practice as well a patience while learning to coordinate multiple tasks with multiple skills. 

Suggested Checklist for the Teen Driver:

Physical Skills

·      Focus constantly on the task of driving even in the presence of minor distractions

·      Twist and turn body quickly (to see motorists or pedestrians coming from the far right and far 
left

·      Move the head and neck side to side, up and down, back and forth and use visual scanning techniques


·      Good joint range of motion and coordination are needed to: 
hold, control and turn wheel
 reach and manipulate knobs/buttons/controls
use turn signals and wipers
 adjust mirrors
 quickly move the foot from the accelerator to the brake

Visual Skills

•       Good distance vision for checking intersections, highway changes, signs
determine distances needed for merging into lanes, making turns, lane changing look at highway and even weather conditions
look for other approaching cars
observe and scan far ahead for potential safety threats or hazards
observe road conditions
watch for pedestrians

•       Close vision is needed to: Judge the closeness of other cars, pedestrians, walkways distinguish curbs, ramps, roadways, etc.
distinguish details
read road signs, maps, inside car features

•       Fluid peripheral vision is needed to see a moving object (like a person stepping off a curb) Hearing is used to detect:

•       Determine closeness of approaching cars (by the sound of tires and engines)
inside car sounds for "empty gas tank" or "check oil".
odd engine sounds suggesting maintenance problems
outside sounds of life: such as children playing, distracted pedestrians
outside warning sounds such as car horns, trains, ambulances, sirens, screams threatening weather conditions, etc.

•       Touch: The awareness of touch is needed to gage how hard to tap the brakes or press the accelerator. It is also important to be aware of gripping the steering wheel.  Fluid use of palmar and pincer grasp with and without associated reaching.

Mental/emotional Skills

•       The brain is "Central Control". It directs the body to do everything when driving. Driving requires a clear and alert mind. The new driver should not have the radio/tape player or other auditory distractor on when driving

•       Quickly and correctly choose the best options in constantly changing situations quickly and correctly react to prevent or reduce accidents or injuries.  To be able to 
quickly make the best decisions given the set of circumstances
 quickly recall and apply driving rules and regulations at all times.

Teens, inclusive of those with HFASD, and the desire to drive are most probably inevitable.  The current statistical rate of teen automobile fatalities does not have to be.  OT’s can make an impact here and the sooner the better!!

Additional references:

·      Centers for Disease Control and Prevention. Web-based Injury Statistics Query and Reporting System (WISQARS) [Online]. (2010). National Center for Injury Prevention and Control, Centers for Disease Control and Prevention (producer). [Cited 2010 Oct 18].

·      NHTSA[2009]. Fatality Analysis Reporting System (FARS), 2009. Washington, DC: U.S. Department of Transportation, National Highway Traffic Safety Administration, National Center for Statistics and Analysis.

·      Finkelstein EA, Corso PS, Miller TR, Associates. Incidence and Economic Burden of Injuries in the United States. New York: Oxford University Press; 2006.

·      Insurance Institute for Highway Safety (IIHS). Fatality facts: teenagers 2008. Arlington (VA): The Institute; 2009 [cited 2009 Nov 3]. 

·      Chen L, Baker SP, Braver ER, Li G. Carrying passengers as a risk factor for crashes fatal to 16- and 17-year old drivers. JAMA 2000;283(12):1578–82.

·      Jonah BA, Dawson NE. Youth and risk: age differences in risky driving, risk perception, and risk utility. Alcohol, Drugs and Driving 1987;3:13–29.

·      Simons-Morton B, Lerner N, Singer J. The observed effects of teenage passengers on the risky driving behavior of teenage drivers. Accident Analysis and Prevention

·      National Highway Traffic Safety Administration (NHTSA), Dept. of Transportation (US). Washington (DC): NHTSA; 2000a [cited 2009 Nov 6].  

·      National Highway Traffic Safety Administration (NHTSA), Dept. of Transportation (US). Washington (DC): NHTSA; 2008b [cited 2009 Nov 6 ].

·      Centers for Disease Control and Prevention. Youth Risk Behavior Surveillance—United States, 2007 [Online]. (2009). National Center for Chronic Disease Prevention and Health Promotion (producer). [Cited 2009 Nov 6 ].

Keeping “it” a secret!! Dumping the Guilt!! Helping our families

No parent wants their child labeled, made fun of by peers, or ostracized in any way.  But when does “protection” go too far?  When is “keeping the secret” more harmful than helpful?

Being an occupational therapist is a commitment to life-long learning.  So in my 35+ years of practice I had not encountered a child with XXX Syndrome until December 2011.  I had to get a handle on what it was, prognosis, treatment and life consequences. 

I have chosen this scenario because it was new to me, and perhaps is to my readers as well.

So what is it? It is a chromosomal variation that puts an extra X chromosome in each cell of the human female.  It is not inherited and is caused by an error in cell division in utero.  Generally speaking, these children are usually within normal IQ but may be lower than their genetic siblings, have speech delays and/or poor language skills, and have delayed motor skills with specific coordination and generalized clumsiness.  There are also some slight physical differences but nothing too pronounced that would set them remarkably apart from their peers.

So here I am working with a parent who wants “all of this kept quiet’; not allowed to share with the teachers or the head of school, I am in a therapeutic communication no-man’s land. 

During the evaluation, when trying to help the mother feel less anxious, I said “as one parent to another, our children are who they are and what they are we cannot take blame or credit”.  At this she promptly replied, “oh but it is my fault, it was my egg that did not split right, this is all my fault”.  Stunned and incredibly saddened all I could do is take her hand.

How many parents are in this situation?  How many parents live the with misplaced burden of blame (about their children)?  How often do we (as therapists, teachers, etc.) get so caught up helping the child that we miss what is going on inside the parent that lives daily with these overwhelming feelings? 

As parents, and particularly moms, we (myself included) are in charge of “making it right”, “fixing it” and “kissing away the hurts”.  When hurts just cannot be made right or kissed away, when the diagnosis is devastating, when the earth starts moving under their feet, parents become our patients too.

How your chosen professional deals with you and your family is as important as making sure that your  child is achieving developmental gains.

Sometimes the health situation is something parents cannot “just get over”; it is a seismic life shift that impacts them, their child, and their other children.  Below is a list of ideas that my be helpful for the family and that can easily be incorporated into OT sessions and/or therapy.

1.     Including siblings during some of the therapy sessions

2.     Cooking cookies during a session with siblings and then having a “party/snack” together—letting the child in TX be the “leader”

3.     Helping families structure homework or quiet time (if not homework, drawing, reading, etc.)

4.     Talk about it, and then talk some more, there is no monster in the closet it is a fact that just is—keeping it natural makes it OK.

5.     If needed suggest a support group for the parents/family if there is not one, contact a psychologist or a counselor and with respecting privacy, ask for resources

6.     Former client’s families that have been through similar situations are often a great resource for both information and support.

7.     Encourage the parents to share confidentially with the school, so that accommodations and modifications can be offered and learning stresses decreased.

8.     Celebrate each other:  make a “WOW Board” and each week each person in the family gets to post at least one thing that they are really proud of.

Keep sharing with the family all the wonderful things their child can do. Shine “light” on the achievements.  If they haven’t shared the child’s issues with grandparents, or a close trusted extended family member or friend, encourage them to do so.  Sharing this information allow the parent to not be alone and creates for them a caring community of support.

So, shhh no more, and shoo away the guilt—my daughter (now 34 years old) wrote a song when she was in 7^th grade; the refrain was:  “Kids don’t come with instruction books, and they don’t come with guarantees, I’d like to thank you Mom and Dad for taking care of me”. 

So, remember Mom and Dad, take care of your child and YOURSELF too!!.