Monday, April 30, 2007

Interesting study released about autism and siblings' development

Younger siblings of children with autism are at risk to suffer from delayed verbal, cognitive and motor development in their early childhood years.

This finding is the result of a research project carried out by a staff headed by Prof. Nurit Yirmiya and doctoral candidate Yifat Gamliel of the Hebrew University of Jerusalem and Dr. Marian Sigman of the University of California, Los Angeles.

In their research, they found that some siblings of children with autism – ranging from fourteen months to four and half years -- were diagnosed with delayed verbal, cognitive and motor development. After the age of four and a half, most of those children were able to close the gap between their development and that of other children of the same age who had siblings with normal development, except for some small delays in verbal abilities.

The results of this research have been published in a special issue of the Journal of Autism and Developmental Disorders that was devoted entirely to the subject of diagnosis of autism in very young children. The issue was edited by Prof. Nurit Yirmiya and by Prof. Sally Ozonoff of the M.I.N.D. Institute at the University of California, Davis. They reported finding that 30 percent of those children with older siblings with autism were found to have delayed development in the three areas studied, as opposed to only 5 percent in a comparison group (children whose siblings did not suffer from autism).

The reasons for this phenomenon, says Prof. Yirmiya, can be traced to the genetic tendency of children in the former group to carry an endophenotype of autism (an hereditary characteristic that is normally associated with some condition but is not a direct symptom of that condition). "Siblings of children with autism are likely to inherit genes that will cause a weakened expression of autistic symptoms," she explained. These can take the form of delayed linguistic abilities, difficulties in expressing feelings and in making eye contact, and in social interaction.

Prof. Yirmiya said that such problems cannot be traced to an imitation of the behavior of the older sibling with autism. "The children who were examined in the research had other models of behavior which they could have imitated besides their siblings with autism, such as parents, friends or other (normal) siblings in the family with whom they had frequent contact," she asserted.

The research tested the behavior of 39 children in Israel who had older siblings with autism. The research also involved a comparison group of children with older siblings of normal development. The children in both groups were examined at the ages of four months, 14 months, 24 months, 36 months and 54 months.

The results of the research showed that there were no significant differences between the two groups at the age of four months. Most of the developmental delays were found to appear in the first group from the age of 14 months until the age of four and half. After that, most of those in the group of siblings with autism were able to close the gap between them and the children in the comparison group, with the exception of a few children who persisted with some difficulties in verbal expression.

Prof. Yirmiya said that follow-up work should be undertaken into the elemental school years in order to determine whether there are any problematic symptoms, such as learning difficulties, since these sometimes come to the surface at a later age.

Prof. Yirmiya said that while the research does illustrate some developmental problems with siblings of children with autism, the fact is that to a large extent these problems resolve themselves at a young age without any intervention. Therefore, it is not clear whether prevention programs should be recommended for such children. especially considering the burden that the families are already experiencing.

I think the findings of this research are fascinating. I am going to contact the doctor who dx'd the girls and see what she has to say. If she has anything to add, I'll post.

For there is nothing hidden that will not be disclosed, and nothing concealed that will not be known or brought out into the open.
Luke 8:17

Sunday, April 29, 2007

better when we're together

After 14 years of marriage, Christy and Jeff Garner say they are beating the odds.

About four in five couples who have a child with autism get divorced, according to the National Autism Association.

"We're doing really well, then," Jeff said chuckling.

Autism is a great strain on all families affected by the disorder and the Garners are no different.

Their 4-year-old daughter, Josie, was diagnosed three years ago with moderate to severe autism, a developmental disorder that impacts social interaction and communication skills.

This little girl loves to cuddle with her dog, Baxter, listen to music by the Cheetah Girls and shop for, buy and wear any color of Crocs shoes.

But she has developmental and emotional needs that put a strain on family, finances, careers and relationships for her parents and big sister.

"Stress on parents of children with autism is higher than in parents of children with other disabilities," Dr. Diane Edwards told a group of families at a Casper Autism Society meeting.

"Your kids do things that embarrass you," said the Casper developmental pediatrician. "And the stress becomes even worse, when everyone thinks they have the solutions to your problems."

The time and expense of caring for a child with autism is another strain. According to the National Autism Association, a family will spend an estimated $40,000 to $70,000 a year on therapies and resources for a child with autism.

Several families we know who've been drafted into life with autism haven't made it and it is easy to understand why.

Jimmy and I feel very blessed that our relationship has not been torn apart by the girls' ASD diagnoses. There have been times of tremendous strain and isolation from everyone we know and from one another (despite living under the same roof). The toll of the daily stress is impossible to measure, but almost 6 1/2 years into our lives with the girls we are still soldiering on together. We get about one date a year and we never have any money for extras, but we have found ways to keep our sanity and keep our relationship in pretty good shape. The hardest part was letting go of the way we thought our lives would look as a family and as a couple and accepting that our lives do not resemble the lives of most people's that we meet. Discovering contentment in the little joys that come with living in the now and harnessing inner strength we never knew we had are what keeps us going. And never forgetting how to laugh. We could not survive without being able to laugh in the face of some of the most unimaginably dark times.

As autism awareness month comes to a close, I want to remind people that behind every child with autism there is a family trying to keep it together. If you know someone whose family is affected by ASD, I ask that in addition to loving on their kiddos, love on the moms and dads too. They need your patience, encouragement, and support as well.

On May 1st, Autism Awareness Month will be over, but for the families who are affected by the disorder, it never is.

Though one may be overpowered, two can defend themselves.
A cord of three strands is not quickly broken.
Ecclesiastes 4:12

Tuesday, April 24, 2007

"Your child has autism. Good luck with that."

"Your child has autism. Good luck with that."

In other words, "Here's your hat. What's your hurry?"

That was our experience and it is the experience most parents have when the evaluations have been finished and the psychologist hands down the diagnosis of autism.

This article is a good read. It describes what many parents go through just after the diagnosis and then year after year as they struggle to get help for their children while struggling to keep their families together.

Their children's autism consumes them. It commands all of their attention to a point where when a stranger asks them to describe life as they now know it, they cry.

"People," Laurie says, "have no idea."

Like all parents of children with autism, their children's diagnoses first devastated them, then overwhelmed them.

In the midst of their grief, they discovered that they were pretty much on their own.

There would be no government outreach worker to advise them; there would be no one guiding them through the dizzying array of therapies out there for their child. There would be no one helping them hire therapists and consultants -- if they could find therapists and consultants who didn't have waiting lists.

"For me," Jannise says, "when I first got the diagnosis, it was a feeling of completely being lost, of not knowing what to do, of not knowing how to do it.

"And there was a lack of support from the system, too, because it was like, 'Okay, you've got a diagnosis, now go away."

Click HERE to read the full article.

But now I urge you to keep up your courage, because not one of you will be lost; only the ship will be destroyed.
Acts 27:22
  • International Day of Prayer for Autism & Asperger's Syndrome