Tuesday, September 8, 2009

'Foster Care' Kids....they are without Parent Advocates

Finally, an article that asks the real question...and, an interesting read, by author and autism researcher, David Mandell:

Are autistic kids in foster care system being over medicated?

Who should we as a society be watching out for more than kids with disabilities who are in foster care? They are kids. They are disabled. They don’t have their parents to advocate for them. They are our responsibility once they enter into the foster care system.
What if they are being over medicated?
One subject that comes up a lot in the online autism community is the use of psychotropic medication on autistics. Note that the following is my opinion and not from the paper: medications, including psychtropic medications, have their place and can be beneficial, but great care and monitoring must be taken to insure that they are appropriately used. Psychotropic medications should not be used as chemical restraints.
That is why I was very interested when I saw that this paper was going to be published in Pediatrics: State Variation in Psychotropic Medication Use by Foster Care Children With Autism Spectrum Disorder.
The paper has been out for a while but I couldn’t blog it right away. I wanted to take the time to do this paper justice. In the end, I don’t know if I have as I’m trying to find a good “voice” for this post. I keep switching between trying to give an uncolored presentation of the data and being outraged.
Yes, outraged.
The paper authors are David M. Rubin, MD, MSCE, Chris Feudtner, MD, PhD, MPH, Russell Localio, PhD, and David S. Mandell, ScDd.
If you are a regular reader of this blog, you may know that I have a great admiration for Dr. Mandell and his group. He asks important questions, often about groups like autistic racial/ethnic minorities or about autistic adults. Groups I consider to be the underdogs in the struggle for recognition and services in the autism communities.
Who could be more of an underdog than disabled kids in foster care?
One of the reasons the authors give for studying autistic kids in the foster care system is:
Second, beyond the cumulative impact of trauma on psychiatric symptoms after maltreatment, children with ASD in foster care are particularly vulnerable to the social and psychological disruptions that foster care placements can create, such that an excessive variation in the use of psychotropic medications between states may indicate problems in the ability of different foster care systems to achieve placement stability for these children or adequately provide for their well-being.
My read on that—autistic kids are more vulnerable to being traumatized by the foster care system, and the states using more meds may be worse at being able to care for these kids.
The authors list a number of factors that could play into this, including lack of resources and lack foster parent or caseworker training. One big factor—the possibility that these kids are frequently moved around. This is hard on all kids, but is obviously going to be especially tough on ASD kids.
The objective of the study was:
The objective of this study was to compare on a national cohort of children with autism spectrum disorder (ASD) the concurrent use of >=3 psychotropic medications between children in foster care and children who have disabilities and receive Supplemental Security Income, and to describe variation among states in the use of these medications by children in foster care.
They are looking at kids getting three or more psychotropic medications at a time.
Psychotropic medications include:
neuroleptic, antidepressant, stimulant, anticonvulsant/mood stabilizer, anxiolytic, and hypnotic agents. Lithium was categorized with the anticonvulsants.
What did they find? For starters, 20.8% of autistic kids in foster care were using three or more classes of psychotropic medications. This double the number of kids who were classified as having a disability (10%).
I could see people arguing that by the nature of the disability, autistic kids might be expected to use more psychotropic medications. Or, that kids in foster care might be more likely to use multiple psychotropic medications. The authors acknowledge this, but point out that:
Nevertheless, Although one might expect the overall use of psychotropic medications to be higher for children in foster care than for other children, state-to-state differences in the average use of medication by their children, although expected to vary to some degree randomly, would not be expected to vary excessively unless system-level factors were exhibiting a high level of influence on such use independent of children’s needs.
My interpretation: there is no obvious reason why the use of psychotropic medications should vary much from state to state. There may be some statistical variation, but each state should be pretty close to the average.
That is, unless there are “system-level factors” which have “a high level of influence on the use of psychotropic medications independent of the children’s needs”.
My interpretation: if there is a variation by state, something other than the needs of the children is likely to be causing it.
And, yes, they did find a state-to-state variation in psychotropic medication use:
Forty-three percent (22) of states were >1 SD [Standard Deviations] from the adjusted mean for children who were using >=3 medications concurrently, and 14% (7) of the states exceeded 2 SDs.
Statistically, they would expect 2 states, not 7, to be more than two standard deviations from the average.
OK. My guess is that this point most people’s eyes are starting to glaze over. 14 states instead of 2 are more than two standard deviations away from the average in terms of foster care autistic kids using 3 or more psychotropic medications. Not exactly a sound byte you can take to your congressman, is it?
How about this, in some states over half of the autistic kids in foster care are getting more than 3 psychotropic medications. Half of the kids. Or, how about this—the state-to-state variation in the raw numbers vary by a factor of 10.
Yes. In some states about 5% of the kids are getting three or more psychtropic medications, while in others it is as much as 60%.
Take a look at the figure below (click to enlarge). Pay special attention to the figure on the left, which is the raw data.

The raw data show the huge variation in use of psychotropic medications by state.
Why do the raw data and the adjusted data differ so much? The adjusted data is controlled for other diagnosed clinical conditions. These include depression, bipolar disorder, anxiety disorder, attention deficit disorder, conduct disorder, schizophrenia and mental retardation.
ASD kids are more likely to have other diagnoses if they are in foster care. 32% of ASD kids have another diagnosis, while 54% of ASD kids in foster care have 1 or more additional diagnoses. They are more likely to be given medications as well. This is shown in Figure 1.

Again, my read on this: A study like this can’t discern why ASD foster kids have more diagnoses and get more medication. It could be that these kids actually have more conditions and need the medications. It is possible that the trauma of the foster care system is affecting these kids greatly. It is also possible that some kids are being given extra diagnoses in order to justify the medications.
The authors note this as quoted below:
Furthermore, we are concerned that the true magnitude of variation might be larger than we report, because our method of analysis adjusted conservatively for other psychiatric conditions listed in the children’s records; if these diagnoses were not accurate (as has been suggested by others)[ref 15] and were instead recorded as a means to justify treatment with medication, then our analysis might have underestimated the true extent of state-to-state variation.
I am very glad they included the raw data in this case. It highlights the big potentiality that there is a bigger state-to-state variation than in the adjusted data.
Seriously, why would ASD foster-care kids in Arizona be more likely to have a second (or third or fourth) diagnosis than the similar kids in Tennessee?
There is a lot more in this paper. But as one final note, here is a comment about the youngest kids in the study:
Finally, we also note that younger children in foster care were proportionately using more medication; as many as 1 in 8 children aged 3 to 5 years in foster care was receiving medications from >=3 psychotropic classes in this sample from 2001
As I mentioned at the outset: who is more vulnerable than a disabled child in the foster care system? For Americans like myself, the kids in this study are our responsibility.
It looks to me like we are failing them.

Friday, July 10, 2009

Mothers of Children with Autism Have Higher Parental Stress, Psychological Distress

Newswise — Ask any mother and she’ll tell you that raising a preschooler is no easy task. Now imagine what it must be like to bring up a child with autism or a developmental delay. Researchers at the University of Washington’s Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children’s problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism. “Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers,” said Annette Estes, lead author of a new study and associate director of the UW Autism Center. Surprisingly, the research also found no link between a child’s decreased daily living skills and increased parental stress and psychological distress. “This finding was counterintuitive,” said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. “If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay." These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules. For this study parental stress was defined as being the stress directly related to a person’s role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting. The study included 73 mothers and their children – 51 of the youngsters had an autism spectrum disorder and 22 had developmental delays. The families were part of a larger study exploring the neurobiology and developmental course of autism. The children in the stress study were predominantly male, white and about 3½ years old when data was collected. Parents filled out a number of detailed surveys that measured parenting stress, psychological distress, problem behaviors and adaptive functioning level. The last charted a child’s daily living skills in such areas as dressing, feeding, using the toilet, bathing and helping with household chores. The study, Estes said, looked at psychological stress, not psychiatric disorders in mothers. “We were not diagnosing disorders and our sample of parents likely did not include the most distressed parents, those who did not have the resources to take the time to participate in a research study or those who were probably too busy and stressed raising a disabled child to participate. She noted that problem behavior needs to be a crucial target in treating children with autism and developmental delay. “We need to focus on it because it appears to have the potential to disrupt the family, parenting and the child. While problem behavior is not a core element of autism, it might rise to the top of the issues that have to be dealt with first in a clinical setting,” Estes said. “Help in what we call family adaptive functioning is what we need to figure out in these cases. How to help families is important because high levels of stress and psychological distress can interfere with early identification of autism and interventions which are delivered by parents. There’s another good reason to do this: Parents who feel supported can better support their children."

Thursday, June 18, 2009

Even with the economic stress that we face, we must remember that we can affect change in our kids...

By Diane Rusignola from news.medill.northwestern.edu is.gd/FNyL
For the parents of children with autism, social and communicative symptoms are complicated with physical problems like constipation, diarrhea, digestive pain and gas. Can putting a child on a special diet really reduce or even eliminate autism though? “We know that kids with autism have nutrient deficiencies,” said San Francisco-based Julie Matthews, a certified nutrition consultant and author of “Nourishing Hope for Autism,” at international nonprofit Autism One’s conference at the Westin O’Hare last weekend. “When we [develop] an autism diet, we want to focus on getting good nutrition in." Matthews recommends adding “foods that heal” and have probiotics to the diet of an autistic child, as well as removing foods that cause inflammation. As digestion improves, autistic children can “focus better when they’re feeling better,” and therefore language and sleeping irregularities can improve. “The whole body works together,” agreed Chicago dietician Karen Benzinger, who did not attend the conference. “If one thing’s off, unfortunately it can throw something completely else off. The two are always going to be somewhat related, but you have to find the cause in order to help the effect." Benzinger suggests that parents have a dietician as a part of their therapy team, in addition to their primary care doctor, psychologist and any other specialists, in order to really evaluate a complete nutrition picture. “Until you really get that full assessment of exactly what [your child is] eating and making sure that there are no other intestinal issues going on,” she said, “Then you really can’t start to eliminate things." Benzinger said keeping a complete food journal and having allergy testing done could be good initial steps as well. Once parents have established their child’s individual needs, there are a variety of diets they can try out. Matthews said the gluten (wheat) free, casein (dairy) free diet is one of the most popular, as the reduction of these things in diet can help with impulsive behaviors, lack of focus and even speech problems, she said. Soy blocks the absorption of calcium, magnesium and zinc, so she recommends making it a soy-free diet as well. Parents can learn more about each through Matthews’ Facebook group, which has over 1,200 members and 100 discussion topics. “What does a good diet look like?” Matthews asked during her presentation. “It’s going to be whole [foods], unprocessed [and] organic whenever we can." One easy step parents can take to include necessary veggies in the diets of picky eaters is to puree them and add to sauces or muffin, pancake and meatball mixes, she said. For children with texture issues, she suggests starting them out eating carrot chips if they are only eating potato chips now. “Get creative with the flavor and the texture and the presentation,” Matthews said. “It will really go a long way." Although it might be overwhelming to begin, parents can take solace in simple steps like soaking their seeds in water overnight, and other shared tips from experts like Matthews. “Do one thing at a time,” she recommends. “Chart your progress and remember to get some support if you need it."

Wednesday, January 28, 2009

Is the GFCF Diet a Good Fit?

Parents really are yearning for information on how to help their child with ASD. We've been talking about 'awareness' for so long. It's no wonder that Parents are fearful, saying "if I wait for 'science' to provide the data, it will be too late. My child will be grown. I have to know something now. I have decisions to make now!" This is heart-wrenching. It is time to move research from the bench and into communities to support Parents. Education is key for Parents and Caregivers.
Here's an excellent article. "The Gluten-Free, Casein-Free Diet in Autism: An Overview with Clinical Implications" (Dec 2008). It goes directly to the research and can help you decide if the GFCF diet is a good plan for your family. Now you can weigh the pros and cons with good information. Read on! You'll be glad you did.
This article can be accessed online in its entirety at: http://ncp.sagepub.com/cgi/content/abstract/23/6/583