Parents of children with ADHD may want to delay the time when their children are allowed to cross a street by themselves. Researchers at the University of Alabama at Birmingham find that kids with ADHD are at increased risk of being hit by a vehicle when crossing a street.
Photo © Nick White
Kids with ADHD More Likely to Be Injured Crossing the Street originally appeared on About.com ADD / ADHD on Tuesday, August 30th, 2011 at 12:37:17.
Dr. Bernard Rimland founded the Autism Research Institute back in the 1960's. When he passed away just a few years ago, his leadership position was taken by Dr. Stephen Edelson.
Both Rimland and Edelson are controversial figures. Rimland was a true pioneer in autism research, and it is largely due to his efforts that the "refrigerator mother" theory of autism causation is no longer popular in America. On the other hand, Rimland is also credited with the development of theories of autism causation that conflict directly with those of mainstream researchers. The Autism Research Institute promotes the DAN! (Defeat Autism Now) autism treatment protocol, which includes alternative treatments such as chelation, special diets, and other "biomedical" treatments. None of these are supported by, for example,by the American Academy of Pediatrics. Dr. Edelson carries on the mission of ARI in Dr. Rimland's spirit.
Today, a blogger posted a link to an interesting editorial by Dr. Edelson. In it, Edelson repudiates the idea that double-blind, placebo-based studies should be the gold standard for autism research. Rather, he says, single subject studies can be just as effective. This idea goes directly counter to the general perspective on research. While case studies and small samples are interesting, and may direct researchers in a fruitful direction, most researchers would say that such studies are far from the "gold standard."
Here's an excerpt from Edelson's editorial:
Single subject designs allow individuals to serve as their own controls in research, thus, respecting the heterogeneity of the autistic population. In addition, these designs can be used to measure changes in behavior across various settings to ensure that generalization has occurred and to determine the amount of time that leads to generalization. Single subject designs can also be used to evaluate the impact of different interventions on an individual while providing an objective method for researchers who do not have access to large groups of individuals to study. Finally, the results of a series of single subject designs can be combined with other measures to determine the impact of treatments among a larger group. Single subject designs are robust ---they meet the standards for rigor: internal and external validity, control, replication, causal relationships, and ethical concerns.
Certainly single subject designs, as Edelson says, "can be combined with other measures" (such as large, double blind studies), to provide a good idea of what will or won't work for a large group. But on their own, they are not sufficient.
Why would a single case be insufficient to prove the efficacy of a treatment for a large group? Obviously, any individual person is unique - and, of course, autistic people may have any of a HUGE constellation of symptoms at any level. The number of likely differences between an individual case and your child could be huge. Perhaps that individual has medical problems your child doesn't have - or vice versa. Perhaps that individual is high functioning when your child is low functioning - or vice versa. Perhaps the treatments he or she receives are far better - or worse - than those available to you, even though those treatments have the same name. ABA (behavioral therapy) can be called the same thing, yet provided in completely different ways by different therapists.
[Note: Dr. Edelson contacted me and asked me to distinguish in this blog between case studies and single subject studies. Essentially, case studies are descriptive narratives. Single subject studies, on the other hand, use an "ABAB" approach to study the impact of a treatment on an individual subject. Baseline information is gathered, the treatment is utilized, new information is collected and compared to the baseline. Then, to avoid the possibility of the placebo effect, the same experiment is repeated: the treatment is stopped, information is collected, and the treatment is implemented again. This approach is often used in behavioral research, and is relatively common in psychological research in general. As noted, however, it is usual for such research to involve only 1 or a few individuals. Thus, while it can provide extremely useful information about the appropriate treatment for an individual - and can suggest that a treatment may be more generally useful - it cannot substitute for larger controlled studies conducted at multiple sites.]
There's no doubt that small and case studies are important to science, don't get me wrong. My point, however, is that such studies cannot substitute for large, controlled studies.
Every person is unique. Your child's autism (or yours, if you are an autistic adult) may be caused by any of dozens of potential issues. Your particular symptoms are idiosyncratic. Your access to high quality treatment is what it is. Your child, personally, may respond best to ABA, Floortime, limited diets, sensory integration therapy or RDI.
It is also possible that your individual child may grow and develop simply as a result of growing older and building a more mature sensory and cognitive system. Or that an individual therapy is effective mainly because of the talents of the therapist (as opposed to the intrinsic worth of the therapy).
Edelson's point, in part, is that parents should not avoid harmless but possibly effective treatments because they have not been studies under a "gold standard." And with that, I do agree. The cost and difficulty of creating full scale, double-blind studies for new, non-pharmaceutical treatments is very high indeed - but that doesn't mean the treatments are worthless.
In short, when reviewing treatment options for your child with autism, it is a fine thing to read the results of case and small group studies. But it is critical to understand that those results relate to THAT INDIVIDUAL or group - and may be irrelevant to your situation. When you do select a treatment or treatments, there are basic standards to apply. A few to consider:
More About Autism Treatments and Research:
What is the "Placebo Effect?" -- Placebo Effect and Autism Treatments
If you are researching and trying different treatments for autism, you've probably heard of the "placebo effect." What is the placebo effect, and what is its significance when choosing autism treatments?
Which Autism Treatments Are Working?
You have tried six different treatments for autism. Your child is improving, but which treatment made the difference? Here are some tips for evaluating which treatments are really working for your child with autism.
Beware Magic Potions That Claim to Cure Autism
Is there a cure for autism? Plenty of hucksters are more than happy to prey on your willingness to believe.
What Kind of Research Is Appropriate for Autism? originally appeared on About.com Autism on Saturday, August 27th, 2011 at 08:06:25.
Just received this emailed press release from the Burton Blatt Institute at Syracuse University, which looks like might offer some help to folks in the path of Hurricane Irene. Have other resources? Please share!
BBI/Southeast ADA Center
http://sedbtac.org/ada/publications/emergency_preparedness_resources.doc
Disaster Safety & Preparedness Guide for Seniors and People with Disabilities
http://www.nyredcross.org/?nd=disaster_safety_guide_for_seniors_and_people_with_disabilities
Preparedness: Tips for People with Special Needs
http://www.cdphe.state.co.us/epr/Public/medneeds.pdf
Use of Social Media for Emergencies by People with Disabilities
http://www.wirelessrerc.org/publications/emergency-communications-and-people-with-disabilities/Survey%20Results-Social%20Media%20and%20EC.doc/view
Accommodating Individuals with Disabilities in the Provision of Disaster Mass Care, Housing, And Human Services
http://www.fema.gov/oer/reference/
Hurricane Resources for People with Disabilities originally appeared on About.com Autism on Friday, August 26th, 2011 at 16:03:13.
The Institute Of Medicine has reviewed over a thousand studies, and published its findings in a free, public, online report. It "found no evidence that vaccines cause autism or type 1 diabetes."
Intriguingly, though, while headlines state "vaccines are safe," there are quite a few caveats. Yes, vaccines are generally safe and effective, but they may cause quite a few "benign" side effects and some occasional not-so-benign side effects. In fact, while some members of the public will certainly be reassured that their choice to vaccinate was a good one, it seems unlikely that this new report will change many minds within the existing autism community.
The report states that vaccines are, in fact, safe and effective for most people, but also notes: "Though generally very rare or minor, there are side effects, or "adverse effects," associated with some vaccines. Importantly, some adverse events following a vaccine may be due to coincidence and are not caused by the vaccine." No one who believes their child was vaccine injured feels that they fall into the category of "most people," and all are certain that the changes they saw in their child were no coincidence.
According to the Reuters article:
Among the side effects vaccines can cause, Clayton said most are short-lived. The panel found that the MMR vaccine can cause seizures in people who develop high fevers after getting the vaccine, but these pass quickly.
"They are scary to be sure, but they do not cause any long-term harm and they are not a sign the child will get epilepsy," Clayton said.
MMR can also cause a rare form of brain inflammation in some people with severe immune system deficiencies.
With the varicella vaccine against chickenpox, some people can develop brain swelling, pneumonia, hepatitis, meningitis or shingles, but this occurs most often in people with compromised immune systems.
Six vaccines -- MMR, varicella, influenza, hepatitis B, meningococcal, and the tetanus-containing vaccines -- also can trigger anaphylaxis, an allergic reaction that appears shortly after injection.
But Clayton said this can be addressed with the requirement by doctors to have patients remain in the waiting room for 15 minutes after their shot to make sure they do not have an allergic reaction.
More on Vaccines and Autism
Can Vaccine Injury Cause Autism?
Can vaccine injury cause autism? Many parents wonder, but the answer isn't obvious.
Should Parents Avoid Vaccinations to Avoid Autism?
Should parents skip vaccinations to avoid autism? With all the media hype around this issue, many parents are considering the alternatives. There are some options ... but skipping vaccines is not one of them!
Autism and Vaccines: Are Vaccines Safe?
Vaccine Review Explains Side Effects, Rejects Autism Link originally appeared on About.com Autism on Thursday, August 25th, 2011 at 14:52:56.
A mom writes that she's unhappy with her son's inclusive school setting:
Hello, I have a situation where my very young child (age 7, Grade 1) is being forced into a class with typically developing students where he just does not function. I want him to be in an environment more sensitive to his needs so he can function and learn. Isn't that what school is about? However, the teachers and staff at every meeting feel that classroom is the fit for him. He doesn't complete any work, does not have the level of communication to express himself or bring any of his schoolday home. He cannot follow more than single step direction, and needs to be instructed individually and with constant re-direction or he will wander off in his own world. He has severe sensory issues and its a struggle just to keep clothes on him. He enjoys being in a room with some children, but with a class size of 23-25 its too much. He cannot stand being within 3 feet of a child and has meltdowns daily, if not more frequently. The school's main argument is that they do not have any other environment for him, and he is "just fine" where he is. Any advice on communicating with the school to help get a better fit for him? Thanks!
Legally, the school doesn't have a leg to stand on in this situation. According to the IDEA (Individuals with Disabilities Educational Act), services should be provided based on a child's needs - and NOT on the school's lack of services. There are number of ways in which the situation could be improved:
All of these options, of course, will cost the school more than doing absolutely nothing!
This mom could certainly hire an advocate, get outside testing (at the school's expense) and then threaten to go to mediation and/or due process if she doesn't see action - immediately! But short of this rather drastic and expensive approach, are there good ways to remind the district of their legal obligations and to move the process forward? Share your experiences.
More on School and Autism:
Autism and School: What Are the Options?
What are the educational options for a child with autism? There are more than you might expect, and each has its pros and cons.
What To Look for in a Special Education Setting for Autism
What should you look for in a special education setting for your child with autism? There's no "one size fits all" answer, but there are issues to keep in mind.
Public School and Autism Education: Pros and Cons
Public schools are required to provide autism education. But is public school the right choice for your family? Learn more about the pros and cons of public school for children with autism.
Hello, I have a situation where my very young child (age 7, Grade 1) is being forced into a class with typically developing students where he just does not function. I want him to be in an environment more sensitive to his needs so he can function and learn. Isn't that what school is about? However, the teachers and staff at every meeting feel that classroom is the fit for him. He doesn't complete any work, does not have the level of communication to express himself or bring any of his schoolday home. He cannot follow more than single step direction, and needs to be instructed individually and with constant re-direction or he will wander off in his own world. He has severe sensory issues and its a struggle just to keep clothes on him. He enjoys being in a room with some children, but with a class size of 23-25 its too much. He cannot stand being within 3 feet of a child and has meltdowns daily, if not more frequently. The school's main argument is that they do not have any other environment for him, and he is "just fine" where he is. Any advice on communicating with the school to help get a better fit for him? Thanks!
Help a Mom Change Her Autistic Son's School Setting originally appeared on About.com Autism on Thursday, August 25th, 2011 at 11:09:47.
A mom is in her 30's with a 3 1/2 year old son. Her greatest worry is not school, friends, or even the cost of treatment. Rather, her nightly focus is on what will happen to her child when she is gone - likely 40+ years from now. What advice would you give?
My son is 3 1/2 and has pdd nos. I go through a range of emotions about this diagnosis, beside being exhausted, my husband is never home, works out of state, even though my charles is my one and only i am with him 24/7, i get a break an hour a week, it's exhausting. I lay at night thinking of his future, will he ever be independent? what will happen to him if I die? I an only child and don't have much of a family. To say that I am depressed, overwhelmed, and in need of support is the an understatement, I just deal with it, try to live day by day and do my best not to let my negative and natural emotions get in the way of my enjoyment of my charles. It's so hard sometimes when he gets fixated on certain things and that's all he wants to see and talk about...I Pray to God he gets better as he gets older, I pray hard he'll be independent and be able to care for himself when we are gone, we are in our late 30's. I wish I was coping with this better but I am not, I am sad and so depressed and most of all scared to death about his future.
More About Depression and Autism Parents
Depressed Over a Child's Autism; Can You Help? originally appeared on About.com Autism on Thursday, August 25th, 2011 at 06:33:19.
At the top of the autism spectrum are adults with autism who go off to college, get a job, and live successfully on their own.
At the bottom of the spectrum are adults who are aggressive, unable to care for their basic personal needs, and must therefore live in a restrictive residential setting.
In the middle are most adults with autism. These are people who are verbal, engage, and often very bright and capable in certain areas. Yet despite their strengths, these people can't live independently without support. They may be able to handle a job but have a tough time managing finances. They may be fine so long as nothing goes awry, but fall apart if there's a change in their work or home situation.
People at the top of the spectrum are living in their own homes.
People at the bottom of the spectrum are often in residential facilities.
But where are the people in the middle? The answer is simply, most are living with their parents. Some are employed, others are not.
Sometimes, living with mom and dad works out beautifully. But even when it doesn't, there are few other options.
Yes, there are group homes - but there are far too few. Some are terrific. Others are... not.
Yes, there are innovative setting where adults with autism live, work and recreate in the general community. But there are probably just a few dozen such settings in all of the United States.
Clearly, we need many, many more options for adults who are "not quite ready for prime time." Some families are actually out there creating such options, but not everyone has the time, energy or resources to do something so complex and expensive.
If you were designing an ideal setting for adults on the spectrum - your child, or yourself - what qualities would you include? How would such a setting be funded? Do you know of a model for your ideal? Please share!
Describing an Ideal Setting for Adults with Autism originally appeared on About.com Autism on Tuesday, August 23rd, 2011 at 16:13:11.
Here's a scenario for your consideration (since I live in a tourist town, I have seen this actual situation in real life).
The Jones family scraped together their pennies during a tough year, and manged to pay for one week in the sun. They would stay at a lovely, relaxing resort... enjoy the beach... maybe connect with a few new friends. When they arrived, all was as advertised. But in the room next door was a family with an autistic child who was having a very difficult time adjusting to the new situation. This youngster threw tantrums, made loud noises at various times of the day and night, and once woke all his neighbors up in the middle of the night.
The Joneses asked the front desk whether their room could be changed, but no luck: the resort was full.
The Joneses son asked the boy with autism if he'd like to play, and received a very loud NO, accompanied by a shove.
The Joneses were furious, and felt that their vacation had been ruined. Sure, they said, inclusion was a fine thing - but not if it wrecked someone else's hard-earned vacation.
How should this situation be resolved? How could it have been avoided in the first place?
Autism Inclusion on Vacation: How Should This Situation Be Resolved? originally appeared on About.com Autism on Tuesday, August 23rd, 2011 at 14:50:49.
It is not often that I take a book about ADHD with me to read on vacation, but this book -- Confessions of an ADDiva: Midlife in the Non-Linear Lane by Linda Roggli -- is quite different from the usual book on ADHD. I started reading it just a day or two before leaving for our family beach trip...and I did not want to put it down.
Review of Confessions of an ADDiva
Photo © Linda Roggli
Confessions of an ADDiva originally appeared on About.com ADD / ADHD on Monday, August 22nd, 2011 at 17:37:32.
