A new study published in the Archives of Pediatrics and Adolescent Medicine focuses on enabling an earlier diagnosis of autism by determining a baby’s response to their name at the age of 12 months. The researchers studied two groups of children; the first group was a control group and contained children who were not at risk for developing autism. The second group was children who had an autistic person in their family. Every single child in the control group were able to pass the test by responding to their name at twelve months; approximately 86% of the children in the second group passed. These children were followed until their second birthday and 75% of them were diagnosed with developmental problems. Of those children who went on to eventually receive an autism diagnosis, half failed the name test at twelve months. An abstract of the article can be viewed here: A Prospective Study of Response to Name in Infants at Risk for Autism
In looking back it was right around that age, twelve months, that my daughter started responding to her name. I’m not sure if it was right before or right after but it did seem much later than my son. My daughter seemed to develop her motor milestones within the range of normal but her language was late to develop. I listened to well-intentioned family and medical personal that she was the second child so would talk later and that everything was fine. I’m still a bit annoyed about the wait and missing out on early intervention services but I know that the only direction to go from here is forward. Having a diagnostic tool like this might have been beneficial in my daughter’s case. Of course this name test isn’t an end-all be-all for diagnosis but just another tool, one of many, that are being discovered to help aide in an early diagnosis of autism.
The Kennedy Krieger Institute has launched the Interactive Autism Network (IAN), the first national online autism registry. IAN will bring together parents and researchers through an online registry to help find answers. “Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure,” said Dr. Paul Law, Director, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. “IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it.”
In reading a bit further down the press release it shows that IAN is being funded by a grant from Autism Speaks. Again more search for a cure through biomedical interventions. I am not opposed to biomed but as I’ve previously mentioned I’ve chosen to go the traditional route with therapies. Ava has made tremendous gains in a short time with the therapy route and I’m very thankful. I do understand why families choose a biomed route and am making no judgments about it, its just not the direction we’ve chosen to take.
To read more about the IAN Project you can view the article at Brightsurf.com: Kennedy Krieger Institute launches first national online autism registry
The band Five For Fighting has collaborated with Autism Speaks to help raise funds during National Autism Awareness Month. For every viewing of the online video What Kind Of World Do You Want, up to $0.49 will be donated to Autism Speaks.
From the Autism Speaks website:
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
The organization is not without controversy - especially from adult autistics who wouldn’t be the person they are today if their autism was cured or prevented. There is also a lot of controversy surrounding the video Autism Every Day on the Autism Speaks website. Here’s one point of view that I tend to agree with about the video: Autism Vox: It’s Not Just Autism Speaking.
I have been discussing it for the past few weeks and now it is finally here, today is April 1 and marks the beginning of National Autism Awareness Month. Let’s start off with looking at exactly what awareness means. The American Heritage Dictionary defines awareness as:
Having knowledge or cognizance
So National Autism Awareness Month would have a goal of spreading knowledge or cognizance of autism. There are many public agencies, both in the United States and across the world, that are taking the time to help spread awareness of autism. As mentioned last night VH1 Classic’s Rock Autism website has launched; additionally Toys R Us has their campaign in stores and online to help raise funds for Autism Speaks as well as raise awareness of autism spectrum disorders. More information on the various agencies within the United States helping raise awareness can be found on the Mindless Mommy Autism site.
I have done a few things to raise awareness. I am a member of several online message board communities ranging from parenting to gaming to automobiles. I have made it a point to post a bit about April being Autism Awareness Month as well as some basic information about autism and how it affects my daughter, specifically. I have received nothing but positive feedback from everyone which is wonderful. Take a few minutes this month to spread awareness in your own way, the more people are aware of it now the easier the future may be for our children.
On March 13 I posted about VH1 Classic’s upcoming Rock Autism project; I’ve been checking regularly to see when it will be launched and I just discovered this evening that it is officially live: VH1 Classic’s Rock Autism Campaign. Just in time for National Autism Awareness Month which begins tomorrow, April 1st.
From the VH1 site:
VH1 Classic’s Rock Autism campaign is designed to help educate parents and
build awareness about autism, a complex neurobiological developmental disorder
that lasts throughout a person’s lifetime, and to raise funds for a variety of
autism research, advocacy, and support organizations. Autism affects one in
every 150 children, with a child diagnosed every 21 minutes. Today, there is no
known cause or cure. VH1 Classic aims to galvanize a community of artists and
fans in support of this cause.
Several classic rockers, including Steven Tyler, Dee Snyder, and Rob Halford have participated in a Public Service Announcement to help promote autism awareness. In addition there is a “Facts” section which discusses both diagnostic and treatment options.
Presumably in honor of National Autism Awareness Month, Nick News and anchor Linda Ellerbee will focus on the private world of children with autism. The show, to air on April 22 at 8:30pm ET/PT on Nickelodeon, is entitled Private Worlds: Kids and Autism. “Autism is not a mental illness. It’s not contagious, and it’s not a choice; and while kids with autism have been described as living in their own private worlds,” Ellerbee said, “they are also living in our world. Therein lies the challenge for all of us: How do we live differently together?”
Viewers will first be introduced to severely autistic fifth-grader Andrew; it will focus on Andrew’s inability to communicate his feelings and how his parents deal with it in their everyday lives. In addition to Andrew, Bond a 15 year-old with Asperger’s Syndrome, Matt a 14 year-old with “Savant Syndrome” and even Temple Grandin will be featured.
You can read the entire press release at: Private Worlds: Kids and Autism.
This may sound weird but one thing I have come to learn in the past four months since my daughter’s diagnosis is that there is some divide in the autism community. There may be more than one division but the one that keeps coming back to me is the division of those who feel that autism can be cured vs. those who feel that it can’t. If you say a child has autism it leaves one thinking that there is an affliction that can be cured. If you say that a child is autistic then, in my opinion, it seems as though an acceptance has been made about the disorder and that there is no search for a cure.
This topic can get very heated, I have seem some very distinct arguments on both sides - both from the biomedical minded parents and those who have either tried biomedical interventions and have had it not work or those who after reading about them decided to go the more traditional route with therapies, etc. I typically fall on the crunchier side of things; that is to say that I like to look at things from a natural perspective. With my son we started out with dietary intervention and other non-pharmacological methods before we ended up going the route of a medical intervention. For him, and for us, that was the answer. With my daughter I have done a lot of reading about chelation, diet changes, healing the gut, etc and I have chosen to start with traditional methodologies - therapies, school, etc. This is not to say that I think any of the biomedical interventions are just a waste of time, that is hardly the case. I just haven’t come to that point in my journey where I am ready to accept that the biomedical route is for us. I am a firm believer in “to each their own”.
In roaming the web I found that the founder of the quite popular Autism Hub community has started a new message board for parents of autistic children. Did you catch how I said that? “Parents of autistic children.” Not parents of children with autism. Prior to my journey down this road I’d have not noticed the fine nuances of those two statements, but now they speak loudly.
Dictionary.com defines comorbid as:
pertaining to two diseases which occur together, such as ADHD and depression
and also as:
existing simultaneously with and usually independently of another medical condition
ADHD isn’t always seen alone, very often there are comorbid conditions present - from sensory processing disorder to autism spectrum disorders to anxiety. In my son’s case he presents with ADHD (primarily hyperactive/impulsive type), sensory processing disorder, and childhood anxiety. According to an article “ADHD with Comorbid Anxiety” by David Beck Schatz and Anthony L. Rostain “ADHD is often comorbid with anxiety disorders, with rates approaching 25% in many samples.” That means that as many as 1 in 4 people afflicted with ADHD also suffer from anxiety, that’s quite a high rate.
Now let’s pursue other conditions which are often found alongside ADHD. In my reading I saw mention that somewhere between 50% and 90% of people diagnosed with ADHD will be treated for a second condition at one point in their life. The more commonly diagnosed comorbid disorders are depression, bipolar disorder, anxiety, learning disabilities, and oppositional defiant disorder. This makes me wonder what it is in these individual’s brain wiring or genetics that leaves them open to additional diagnoses above and beyond the initial diagnosis of ADHD. This also makes me wonder if my son has a more arduous road ahead of him then I initially thought.
Last night my parents watched the kiddos so my husband and I could have some quality time together. We went out together and were only gone about three hours but it was refreshing to have some time for just us. I recently heard a statistic that was quite frightening - something like 80% of couples of children with special needs end up divorced. When I married my husband I married him for life. We talked about this last night at dinner and can definitely see why; have children with non-typical needs is very stressful. My husband works approximately 70 hours a week plus he comes home and helps with the nighttime parenting. I am a stay-at-home-mom so can’t really count how many hours I work because I’m on-call basically 24×7.
I’ve been feeling really frazzled lately so last night was a nice getaway. I don’t know what is going on with my 5.5 year old but his behaviors are just getting worse. He is the most stubborn person I know. He’s beyond strong-willed, he’s beyond difficult, he’s beyond high-spirited - he is just Alex. Alex…is…a…handful. I love the kid dearly but I really want to figure out what’s going on in that little head of his so we can address some of these issues. Thankfully right now his ultra-stubborn and defiant streak hasn’t crossed over to the classroom but I know it is only inevitable - given enough time his at-home and out-and-about behavior is going to make its way to the classroom.
My daughter is also picking up on the defiance and stubbornness and has become a handful. She doesn’t have the ability to understand language well enough for me to sit down and talk to her about her new found behaviors so we just kind of have to roll with the punches. Her receptive language (the ability to take in language and understand it) it probably about 1.5 years delayed. For her we still do a lot of redirection, just like we’ve been doing since she learned to walk at 10 months of age.
All of the programs that have been on lately to celebrate National Autism Awareness Month have actually saddened me a bit. My daughter was diagnosed in November of 2006 and I went through the typical grieving stage. Then I bounced out and thought to myself “Hey, maybe my daughter is just a child with sensory processing disorder and language delays and she’ll lose the autism diagnosis one day.” Well reality has really set in this past week, it is quite clear that she is definitely autistic. She is not severely affected, and for that I am very thankful, but she is most definitely affected. I have been the rock for my family, being strong when they were all coming to terms with her diagnosis and now my little rock has crumbled. Thankfully all of my family is there for me and very positive about my daughter and her progress. Now its their turn to be my rock.
If you’ve made it to the end of this post I thank you. This is one of my “mutterings” type of posts - a brain dump so-to-speak. I speak what’s on my mind and get it out there, it makes me feel better in the end.
This is a topic that is near and dear to my heart. For my daughter’s second birthday I bought her a bunch of really cool panties in characters I thought she’d love. She’s a girl, girls were easy to potty train I was told. One day we decided to go for it and put her in panties. At first she peed while sitting in her highchair eating breakfast and didn’t seem discomforted by it. So we put on a fresh pair of panties and a little bit later she was walking across the house with pee running down her leg and seemed absolutely oblivious to it all. I told myself “OK, she’s not ready, we’ll try again later.” Subsequent attempts ended in the same thing - a completely oblivious two-year old. My son wasn’t potty trained until 34 months of age so I’m definitely not one of those “rush to train” types. I figured I’d take her lead.
Flash forward 10 months or so and we realize that there is more to this potty training thing than we originally thought. Not only is my daughter developmentally delayed she also has sensory processing disorder and is of the sensory seeking type. The reason why she was oblivious to the messes she made was because she probably couldn’t feel them. If you can’t feel the sensation that you have to go then how can I expect you to make it to the toilet? If you can’t verbally, or non-verbally, express that you need to go then how can I expect you to make it to the toilet? The answer to both of these questions is I can’t. I have since taken a much more laid back approach to potty-training (or potty learning as I called it with my son). My daughter is on her own schedule, as she is with everything in her development, and when I see the signs in her we will go for it. Right now I’m thinking she’ll be day trained by about 4.5 - 5 years of age just based on where she is now.
There are a lot of resources on the web and in books with methods to potty training children with autism and other special needs but some of them just seem like an absolute chore for both the parent and the child. Check out these Potty Training Guidelines; in step six you are to keep the child on the potty until they are successful and that it could take 1-2 hours. I could certainly think of more productive things to do to help my child than sit on a potty for 1-2 hours. I’m not totally knocking the method because I’m sure its worked for many people, its just not the way I’d like to go about things. Talk to me when my daughter is 5 and not day-trained yet and I might be singing a different tune, but as it stands now this just seems like too much.
There is a book out there written entirely on this topic: Toilet Training for Individuals with Autism and Related Disorders . I haven’t read this book yet because my daughter is not ready for potty training - her bowel movements aren’t regular - heck she doesn’t even notice that she has them half of the time. She has no desire to sit on the potty. For now we’ll take our free diapers from the state and use them until she gets to a stage, developmentally, that she is aware of the pottying, can communicate the needs via words or her picture board, and is motivated to learn.
One of these days we’ll wake up and know its the day to start potty learning with my daughter. What I’ll have to remember to do is have some panties around that actually fit her, the little 2Ts that filled a beautifully decorated gift bag on her second birthday just aren’t going to cut it.
