Many parents struggle with challenges of autism

BARBARA COTTER Updated: October 7, 2010 at 12:00 am • Published: October 7, 2010

“Frustrated over the demands of raising an autistic child, police believe, a Bronx mother shot the boy to death before turning the gun on herself Wednesday night, cops said.”

-- July 29 entry from the blog “Lives Lost to Autism”

 

The deaths of Rene Ogden and her teenage twins, Chase and Olivia, have been ruled a case of murder-suicide - and Michelle Linn isn't surprised.

As the mother of two teenage boys with autism, Linn knows the stress of parenting children with such a challenging disability, and she’s seen the stories of mothers and fathers who could no longer cope. (See list of resources for help below.)

“I can tell you: As soon as I heard the story on the news and someone mentioned that a special ed bus went to their home, I thought, ‘murder-suicide-autism,” said Linn, board president for Alpine Autism Center, a private nonprofit treatment center. “I don’t condone it, but I can certainly relate. You always wonder, ‘Could that be me who snapped?’”

A blog, “Lives Lost to Autism,” chronicles tales of deaths related to the disability. Some of the cases involve autistic kids who wandered off, fell into a pond or river and drowned. Some are cases where autistic kids killed another person.

And several are murders or murder-suicides.

“I could see where something could get to that point, where it’s 2 o’clock in the morning, and you’re cleaning poop from the walls and carpet, or they’re not eating, or crying for two hours at a time,” said Teresa Wright, who has five children — three of them with autism. “It’s intense.”

There are few details of how the Ogden family handled Chase’s autism and how severe his disability was. It's not known if Chase's autism played a role in his mom's desperate act.

However, it appears from several reports that Ogden was depressed and had isolated herself — typical responses to the challenges of taking an autistic child out in public.

“We find often that families are very, very socially isolated, and they acquire an institutionalized mindset about their lives,” said Betty Lehman, executive director of the Autism Society of Colorado and the mother of a 21-year-old moderately autistic son.

“They feel like they can’t go out in public, they can’t go out to the grocery store, because there’s no access to appropriate child care," Lehman said. "And if the child has terrible behaviors, the parents feel they’re being ostracized and judged. It becomes a feeling of despair.”

Lehman and others suggest three key avenues that parents can take to ease the stress:

* Find quality treatment for their children,

* Find respite care so they can take a break, and

* Take part in a support group or other activity that can provide emotional comfort.

“Oh my gosh, it was a lifesaver for me,” Lehman says of her participation in a support group. “It’s great maybe to talk to a professional about treatment, outcomes, statistics and information, but when it’s about your heart, you want to talk to someone who knows what you’re going through.”

But Linn said support groups aren’t enough.

Parents need to find effective treatment at a place that specializes in autism, she said, but there aren’t many around. Respite care also is important, she said, but it isn’t readily available, either.

“There are resources and support; it’s just not enough,” Lehman said.

Still, parents need to make the effort.

“You can’t just sit home and think things are going to get better without therapy or assistance for the child,” said Francesca Cozza, mother a 12-year-old boy with Asperger’s syndrome. “That would be naive.”

Wright wants families to know that it’s rewarding to hang in with their kids and rejoice in their achievements.

“Yes, it’s intense to be a parent of a child with autism, but the joy when they make that progress is just as intense.”


RESOURCES

  • The Autism Society of Colorado can link parents of autistic children with resources, support groups and respite care providers in the Pikes Peak region. Call 1-877-265-6273.
  • Teresa Wright is trying to start a support group in the Fountain-Fort Carson area that would meet the first and third Wednesday of the month. Call 382-8668 for information.

Additional resource information from Kim Hetherington, founder and board president of Autism & Asperger Connection

Asperger Support Group

Meets the third Thursday of the month 7:00 to 9:00 PM
Location: Rockrimmon Branch Library
832 Village Center Dr
Colorado Springs, CO 80919

This is a meeting for family members, caregivers, and adults on the autism spectrum to discuss Asperger-related issues. On nights where the group dynamics warrant, the group splits into a "children" and an "adult" discussion. As this is primarily a support group, attendees are encouraged to generally keep discussion focused to support topics rather than socialization.

Autism Support Group

Meets the second Tuesday of the month, 7:00-9:00 PM
Location: Ruth Holley Branch Library
685 North Murray Blvd.
Colorado Springs, CO 80915

This is a full spectrum, parent/caregiver oriented support group.

Adult Autistic Social Group

Meets the last (last, not fourth) Monday of the month, 7:00 to 9:00 PM
Location: East Branch Libarary
5550 North Union Blvd.
Colorado Springs, CO 80918

This is a social group designed for adults on the autism spectrum. The group is designed to provide a safe, supportive environment where those on the autism spectrum (Autism, Asperger, PDD-NOS) can make friends and explore common interests with others on the spectrum. Participants are encouraged to bring light snacks and a game they would wish to play with the group.

Note: This group has a few general guidelines. As adult conversation occurs, attendees must be age 18+. Attendees must want to attend- we cannot easily accommodate individuals that do not desire to interact! This group is also only for those on the spectrum-We have found over and over that it simply works best this way. If need be, the library itself makes a great "hover zone" for caregivers. We understand the apprehension some folks on the spectrum have to new environments, and will take EVERY step to make somebody comfortable, including meeting beforehand, phone discussions, etc.

Homeschool Support Group

Meets the first Thursday of the month (September - May), 6:00-8:30 PM
Location: Ruth Holley Branch Library
685 North Murray Blvd.
Colorado Springs, CO 80915

This support group is for parents who homeschool their child/children. Please RSVP to Kim Hetherington at kahether@comcast.net or call 598.0992. This event is open to homeschooling parents with a child whose needs are outside the typical realm, this would include autism, aspergers, health issues, or any other diagnosis.
This support group runs September through May.

 

In addition to our support group meetings, we also have two online groups, http://health.groups.yahoo.com/group/PEAK (for families & ASD individuals only) and www.autismaspergerconnections.org (for anyone interested in the local autism community).

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