Mutterings Of A Mindless Mommy

To explain or not to explain, that is the question. 

 When I am out in public and I see other children Ava’s age doing ‘normal’ 3 year-old things and Ava perhaps off in her own world doing her own thing I often wonder if I should explain it to people who inquire about it.  Ava has times where she can pass as a neurotypical child but if you look closely you’ll notice the nuances between her and her playmates.  However those times where she stops what she’s doing to stim I always get nervous and wonder if I need to explain it.  I have tried saying “she has autism” but I get these looks like “are you kidding me?”  Ava has an endearing smile and in the past few months has become quite aware of her surroundings.  She is not severely affected by autism but she is most definitely affected.  In these situations, once I’ve said she has autism, I then feel like I have to defend it.  I have discovered that the majority of the general public is not aware of autism and the many ways it can manifest.  I was also one of these as I had no clue Ava could possibly be autistic and was a bit surprised by the diagnosis.

I’m new to all of this so while I am comfortable with Ava and her ‘quirks’ I still don’t know how to respond to inquiries, looks, etc when we’re out and about and her “autism is showing“. I’m not usually one to care what other thinks, I’ve always danced to the beat of my own drum, but I find myself feeling nervous in some situations.  When she threw her monster “autism tantrum” at Sea World I smiled and made sure she didn’t injure herself or anyone else; that’s my goal in those types of tantrums.  The looks and comments that I received from everyone just made me uncomfortable in my own skin.  Why should it matter though?  The answer is - it shouldn’t.  When someone asks her what her name is and she doesn’t respond or responds with something that makes no sense like ‘chocolate’ I feel the need to jump in and explain it away.  Is this the right response?  I just don’t know.

I have to get to a point where I have thick skin with regards to the public.  If Ava wants to stop in the middle of the mall to spin and spin then I’ll just make sure she’s in an area without much traffic until I can get her redirected into doing something else.  Sometimes she’s easy to redirect and sometimes not-so-easy.  When given a choice of tantrum or spinning I always choose the spinning.  Hopefully one day, as time passes and I get used to things, I won’t be so nervous and feel the need to explain it to everyone who looks at us weird.

If you are anything like I was when I first thought my daughter might possibly be autistic then you have scoured the web for online autism screening tools.  I took most that I could find and even printed out a few to take to the psychologist.  Some professionals look down upon these tools and others are thankful for them.  Our psychologist was thankful for it as it gave us a good starting point for conversation regarding my concerns about my daughter and her behaviors.  I decided to compile a list of tools that I found; most of which I have used personally.  Some are free, some require a small fee.  I hope that you find this useful.

• Modified Checklist for Autism in Toddlers (M-CHAT) - This is a free screening tool.  You will need to score it with the M-CHAT Scoring Key.
• Checklist for Autism in Toddlers (CHAT) - This is a free screening tool that should be used at a child’s 18-month well child checkup. 
• Parents’ Evaluation of Developmental Status (PEDS) - There is a fee to use this service.  The M-CHAT is administered online for no additional charge at the completion of the PEDS questionnaire.
• Childbrain’s PDD Screening Questionnaire - This is a free screening tool.  Please make sure that you answer the questions based on the directions given as they give detailed information for answering each question. 

Again these are just screening tools and do not constitute a diagnosis.  Only a professional will be able to make an accurate diagnosis for your child, should one exist.  However I found these tools very useful in expanding my knowledge about my daughter and her behaviors and it also helped launch good dialogue between myself and professionals regarding her issues.  If you know of an online screening tool that I don’t have listed here, please leave a comment with the link and some basic information and I’ll add it.

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.

There are several different types of anxiety disorders, which affect approximately 1 in 10 children, and I wanted to take some time to touch on each of them and then discuss how my son is affected.  The first type is Generalized Anxiety Disorder and the children affected with this type of anxiety are often very self-concious and worrisome needing constant reassurance.  Phobias are another type of anxiety; a person with a phobia have an unrealistic fear of an object, situation, etc.  The next type of anxiety disorder is the Panic Disorder.  People, including children, with panic disorders will have repeated panic attacks and they don’t always have a known cause.

 The last two types of anxiety disorders are Obsessive-Compulsive Disorder and Post-Traumatic Stress Disorder.  Obsessive-Compulsive Disorder (OCD) deals with individuals who are often stuck in meaningless routines, repetitive thoughts, and behaviors.   Post-Traumatic Stress Disorder (PTSD) usually manifests after a child has been faced with a traumatic event. 

 Alexander probably has touches of General Anxiety Disorder, Panic Disorder, and Obsessive-Compulsive Disorder.  When he is in social situations, even some that are comfortable to him, he often times shuts down as if he doesn’t know what to do and how to react.  He’ll slouch his shoulders, turn away from the person talking to him, look at the ground, and sometimes he will answer their attempts at conversation.  When asked how he feels he says nervous.  I think this would fall under the general anxiety section, of course I’m no doctor so this is just one mom’s opinion.

 I can only think of two times where he had something that would be classified as a panic attack.  He is underweight and it has been an issue for some time.  I was getting into a neurotic state about it and I think I put too much pressure on him.  Twice in one week he complained that his heart hurt and that it hurt to breath.  We ruled out everything medically; EKG, chest X-ray, full blood workup, etc.  In hindsight this sounds a bit like a panic attack, at least according to friends and family that have experienced them.

 Now I would have never thought of Alexander as having obsessive-compulsive disorder because it doesn’t manifest like you see it portrayed in movies, etc.  He is a creature of routine.  He knows how to get to every place we ever go to and if I take a different route he gets a little nervous and then wants me to map it out on the navigational system in our car.  Once we get close to the destination and he starts to recognize the surroundings his nerves ease up.  When he goes to bed at night the pillows must be in a specific order and the closet must be closed.  If a pillow is out-of-place or even backwards it is upsetting to him.

Now that we have a direction to take with Alexander regardig his anxiety I think we’ll be able to make good progress towards resolving it.  We received the Indigo Dreams CDs that I previously mentioned and he sat down and listened to one of them this evening.  I didn’t think we’d be able to get him to sit still for that long but he was really intrigued by them and actually participated along doing the exercises they discussed.  I’ve also started reading my new library additions, three books on the topic of childhood anxiety.  I need to get a bigger bookshelf!

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.

Please pardon my virtual dust as I touch up the redesign of mindlessmommy.com.  I have switched hosts and switched blogging platforms as I wanted something a bit more dynamic than what Blogger was offering.  The new blogger is great but they don’t allow ftp access and I didn’t want to switch my hosting provider to blogger so here I am.  Some of my links may be broken but I plan on going through later today and fixing them all.  Pink is also much more my style, I’m a girly-girl at hear. 

 Thanks!

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.