A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON THREE: Outside the Safety Net of Home

OBJECTIVE: Assess how you manage with your child “out in public” and develop a new strategy

Our early days were very isolated. Armed with a diagnosis of PDD, that was meaningless, I did not seek out autism support groups. It was hard to go anywhere with my son and his baby sister. I had to be with him and cope with his unpredictable tantrums and running away in distress while hanging on to her or making sure she was safe. And she was not yet out in the world. So we were home a lot. Or I tried to take them to museums or the library. I remember thinking ”IF ONLY we lived in more of a neighborhood, or IF ONLY I bought this toy.” he would be different. (How many ways do we deny reality as a coping mechanism?)

Think About:

Do you think that the public in general has less empathy with autism/Asperger’s than with other disabilities?
How do you decide whom to educate and whom not to bother with?
How much do you disclose?

I have seen an autism society chapter provide a wallet-sized card identifying the person with the disability and noting the reason for certain behaviors in public. My preference is to explain only to people who matter, people with whom I will have more than a fleeting contact. Yet, I wonder: Is there any value in providing some insight to “the public at large”. By this I mean, for example, the cashier in the supermarket who wonders why your child is touching every item that goes through the scanner or why he is smelling or biting on a product that the cashier will have to handle shortly. Maybe there is. Perhaps the value is in letting people know that “autism” does not present as they might think. That every person with autism/Asperger’s Syndrome is different and is not “Rain Man” with savant qualities. Or for those of us who watched “St. Elsewhere”, that autism is not Tommy, the tow-headed nonverbal child of one of the main characters.

One delicate topic on public encounters is coming into contact with law enforcement. Given our children’s tendencies to do some of the following: run away; not respond, become agitated, become explosive, use poor social judgement, it is not unlikely that in the course of our children’s lives, they may come face to face with police. Having police locate a run-away seven-year-old child is one thing. But having a child with a disability, who is not a minor, involved in the criminal justice system is a disturbing possibility, one we face as our son is bigger, stronger and at times, volatile.

While we can’t protect our children from the outside world as they grow, we can try to work with local law enforcement to have a better understanding of autism. Dennis Debault has written and trained extensively on this subject. A father of a young man with Asperger’s Syndrome and a veteran of law enforcement, Debault’s materials are worth a look.
http://policeandautism.cjb.net/

I brought information about his training materials top my police station, where they politely told me they would post it - and they did. I also left a message with the officer in charge of training to see if he would consider purchasing any material. I did not hear back. But every step in building sensitivity and awareness -however small - is valuable.

ACTIVITY:

Take a small 3 x 5 index card and cut it down to the size of a wallet photo. Think of three responses you could give when you are out with your child and he/she is creating some unwanted attention your way. (Responding in a distinct, pre-planned way is not always best when the young child turns into a large teenager or young adult, especially one who is self-aware) Laminate it and keep it handy. When you are upset and flustered, thinking clearly is not easy. Maybe one day you will use it.

ASSIGNMENT: Here's an idea to consider...

Make a personal contact with someone in your local police department, the higher up the better.

Check out the availability of training materials for the local police and offer to meet. Don’t be a stranger in your local police department.
Tell them about your child. Tell them your concerns.
Go to your police station and ask for a special 911 form for disabilities. Although it has broad categories -“blind”, deaf”, developmental disability” - it is plugged into the 911 system so responders do know that someone in the home has a disability. Also, the police may be able to put in more details in their own computer system.