It’s one of those universal truths that it is hard for special needs families to be a part of their faith communities. But there are a number of things, some pretty conventional and some maybe not so much, that will go a long way to helping special needs families feel more included and supported in their church family.
I kind of have a funny relationship with autism awareness month. I remember back when it first became a thing I was kind of hopeful that it would mean more awareness and better acceptance of and support for autistic people. Now every year I wonder what it is autism awareness month is actually making people aware of.
When I talk to people, nice thoughtful well-meaning people, who admit that they little to nothing about autism they invariably know three things about autism:
Here are a few things that I would like people to become aware of this autism awareness month.
Found on Facebook.
Autism Activism Anthropology Project
Kevin Hope, a graduate assistant in the Department of Anatomy and Neurobiology in the College of Medicine at the University of Tennessee Health Science Center (UTHSC), has received a grant totaling $100,000 from the Dup15q Alliance. The award will be used to study 15q Duplication, a syndrome that is caused by duplications in a chromosomal region that typically results in cognitive impairments, autism spectrum disorder and sometimes seizures.
Dup15q Alliance provides information and support to families living with the effects of this genetic variant.
Reliable information can be hard to come by sometimes when trying to understanding how the human body works. You are almost certainly not going to find accurate information in the news/social media. Even scientific journals run into trouble and find themselves having to retract published work for one reason or another. The blog Retraction Watch gives those interested in maintaining the integrity of scientific research the opportunity to keep an eye on what's going on in the research world.
If you're wondering what the relevancy of this is for the autism consider that a case of great significance to anyone with any connection to autism, that of the retraction of a paper by Wakefield, get's a mention in the blog's very first post about why the blog was started in the first place. Consider as well how much grief and angst in the autism community comes about because people don't seem to understand how the scientific process works. Retraction watch is a great opportunity to learn about the scientific process. When the latest news about the latest miracle treatment or the latest causation theory pops up in your news feed or inbox having spent some time studying how the scientific process actually works will help you evaluate said information.
When we think of social isolation in the context of autism spectrum disorders as parents we often worry about the social isolation our children may experience. We are concerned about the hurt we assume they will feel as a result of it. This spring I was dismayed when one of my teenagers missed out on a school dance. I was determined that he would not miss another opportunity to socialize with his peers. After all I know how much those opportunities to socialize meant to me when I was his age.
When the next school dance rolled around I made sure to have all my ducks in a row. I started with my husband first. You know that whole united front thing that parenting and relationship experts talk about. My husband’s response was something along the lines of, “Dance? Why would anyone want to waste time on something like that?” He then proceeded to retell the story of his parents writing notes to school to get him out of having to go to school dances. Something about being against their religion or some such. So much for united front.
I was having the conversation about the school dance with my son on my own. It was a very brief conversation.
What the DSM 5 Says
In the DSM 5 Autism Spectrum Disorder (ASD) is currently classified as a neurodevelopmental disorder. What does that mean exactly? Here’s what the text of the DSM 5 says,
“The neurodevelopmental disorders are a group of conditions with onset in the developmental period. The disorders typically manifest early in development, often before the child enters grade school, and are characterized by developmental deficits that produce impairments of personal, social, academic, or occupational functioning. The range of developmental deficits varies from very specific limitation of learning or control of executive functions to global impairments of social skills or intelligence. The neurodevelopmental disorders frequently co-occur; for example, individuals with autism spectrum disorder often have intellectual disability (intellectual developmental disorder), and many children with attention-deficit/hyperactivity disorder (ADHD) also have a specific learning disorder. For some disorders, the clinical presentation includes symptoms of excess as well as deficits and delays in achieving expected milestones. For example autism spectrum disorder is diagnosed only when the characteristic deficits of social communication are accompanied by excessively repetitive behaviors, restricted interests, and insistence on sameness.”
(American Psychiatric Association, 2013)
The brain works differently, to varying degrees, and everything that the brain manages will also work differently, to varying degrees. These differences show up fairly early in life.
I offer this as a word of encouragement to anyone who needs. Particularly those of us caring for special needs children. Failure is a necessary part of learning. You aren't going to make the right choice every single time. No one can. Accept that fact.
Some people keep souvenirs of their failures to remind themselves that life is too hard to even try to be successful. They use these souvenirs as evidence to justify their belief in the lie that they should not even try. Don't collect souvenirs of failures. Don't hang them around your neck like millstones to drag you down. Instead lay your failures before like stepping stones. Learn from your mistakes and use them to build yourself a path to where you want to go in life. Choose to build a path for yourself to great places.
Teaching children how to handle failure is a vital life lesson. It is a lesson that children will learn as much from what is said as from what is done. Modeling for them how to learn from failure sets the stage for building a life of success. None of us who now walk would ever have learned to do so if the first time we fell down we stayed down and refused to get back up.
There will be lots of failures in your life. Each and every one of them will be an opportunity to start over and strive for success and mastery in life. So what are you going to do with your failures? Will you collect them as souvenirs or will you build a path to greatness?
This is a follow up to a previous post, Understanding CDC Prevalence Estimates.
It is a popular misconception that there is a growing autism epidemic in the US based in part on the changing prevalence numbers reported by the CDC. But given that the CDC is monitoring a sample of those most likely to develop autism one cannot make the claim that there is an epidemic. To the contrary, it is still unclear how many autistic people there are. The most accurate conclusion that can be drawn about the size of the population of autistic individuals using the changing CDC prevalence data is that more of the children most likely to have a developmental disorder at the ADDM sites are being diagnosed and receiving treatment.
So what can the CDC prevalence numbers tell us if they can’t be generalized to the whole population? Plenty. First, we see that race and ethnicity influences identifying ASD and also IQ placement. Second, while it is established in the scientific literature that ASD can be diagnosed as early as 12 months of age it is more commonly identified at 53 months. This suggests that something is causing a delay in diagnosis. Third, boys are still more often diagnosed than girls. Fourth, despite developmental concerns being noted for a number of the children seen at the monitoring sites these concerns did not always generate a comprehensive evaluation for the child in question.
What can parents take away from this discussion of CDC prevalence numbers? Take a second critical look at those making claims about there being an epidemic of autism because, frankly, the numbers available to us do not support such claims. If you as a parent have concerns about your child’s developmental progress push for a comprehensive evaluation of your child. Don’t be put off or take a wait and see approach.
In the United States the Centers for Disease Control and Prevention (CDC) maintains a network of 11 autism monitoring sites across the country known as the Autism and Developmental Disabilities Monitoring (ADDM) Network. Published numbers on prevalence from the CDC come from observations at these sites. The CDC typically publishes the latest prevalence numbers available in the Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. This publication is available for viewing and download on the CDC website www.cdc.gov. The prevalence estimate published in March 2014 (1 in 68, or 14.7 per 1,000) was based on ADDM network observations from 2010.
First let’s define some terms. You may hear in the terms prevalence and incidence used interchangeably in the numbers discussion surrounding autism. However, prevalence and incidence are not the same. There are two types of prevalence to be aware of in this discussion. Point prevalence is a ratio representing the portion of a population that has a condition at a single point in time, point x. Period prevalence is a measure of the portion of a population that has a condition in a set span of time, period x to y. Incidence is the rate at which new cases of a condition occur per person over a period time. Cumulative incidence is the proportion of a population that became new cases within a specified time period. Research is generally focused on point and period prevalence of autism spectrum disorders.
The CDC has been monitoring ASD through the ADDM network since 2000 The following are the criteria, as reported in the MMWR Surveillance Summaries (pp. 3, 4), for inclusion in the cohort samples monitored by the CDC at the ADDM sites.
1. Birth year (children 8 years old during surveillance period) and residency. (children must live in the areas covered by the ADDM sites during the period of surveillance). This is the age by which diagnosis of a developmental disorder is most likely to have been made.
2. Eligible for special education services, have an International Classification of Diseases, Ninth Revision (ICD 9) disability or psychological condition.
3. The presence of certain behavioral or diagnostic descriptions in the children’s files.
4. A diagnosis of disability upon review by trained clinicians blinded to any identifying information about the children based on DSM-IV-TR criteria.
The first criteria, birth year and residency, define the population from which the CDC draws its samples. From this population a sample is taken, based on the remaining criteria, to determine the prevalence of autism spectrum disorders. This selection process presents one of the first problems with the CDC prevalence data. The sample of children monitored by the CDC is not representative of the population of children in the US. The children monitored at the ADDM sites are chosen because they have a greater likelihood of having a developmental disorder. Furthermore, the ADDM sites themselves are not randomly distributed and do not provide a true representation of the US population. This biased sample means that the prevalence numbers reported by the CDC cannot be used to make inferences about the population as a whole. While the CDC makes it clear that these are limitations to their surveillance data these points seem to go ignored by the public.
See the follow up post, CDC Prevalence Estimates and ASD Epidemic.